 
I'm Still Blogging

(A continuation of "I'll Blog Till I Drop")

By Elaine Benton 2013©

Elaine was born in England writing poetry and short stories since she was a child. Diagnosed at the age of five with Gaucher disease, and at the age of 44, diagnosed with Parkinson's disease, battling two diseases Elaine's writing is inspirational and quite extraordinary.

Elaine's first book "Parkinson's, shaken, not stirred" is a collection of poems aimed at offering support and comfort to fellow sufferers and caregivers, relating to their daily struggles.

From personal experience she has written with stark honesty and humour, something patients and doctors rarely get to read which has captured world-wide attention. Elaine pours her heart and soul into her writing, giving a new perspective from the patient's view, which holds a strong message of hope, living a full happy life despite ill health and adversity, whilst bringing greater awareness of these two diseases to the general public.

Elaine writes a daily blog reaching out to Gaucher and Parkinson's sufferers, about varied topics related to living with chronic disease and this is the second year that the entire entries have been collated into an e-book which is available for free to everyone.

http://elainebenton.blogspot.com/

www.elainebenton.com

(This biography was provided by Elaine's representative.)

It's Friday again - September 7th 2012

Friday is my favourite day of the week, because it's the beginning of the weekend, and a day that I get to spend with my husband. The weeks and months fly by so fast, the summer is drawing to an end and here we are, already in September. Life is awfully short, so make the most out of each moment, don't put off tomorrow what you can do today, and if you get a chance to spend time with people you love, jump at it. I spent quality time with someone special yesterday, having lunch together we chatted away a few hours. Being with people who make you feel good and that you enjoy their company is like a dose of good medicine. Have a wonderful weekend wherever you are and enjoy, relax and have some fun.

It takes but a thought, an original idea,

Setting in motion, wheels begin to turn,

Aspirations and ambitions born,

Following our dreams we yearn.

But when chronically ill,

Your path is not clear,

To find reason or rhyme,

Hope answers will appear.

There's always a silver lining,

No matter how thin it may be,

That if you look really closely,

Something unexpected you'll see.

Written by Elaine Benton © 2012

Pain Clinic - September 9th 2012

Being in constant pain is very tiring and wearing, making it difficult to be in the company of others. I understand only too well, there's nothing that makes people more uncomfortable than being in the company of and seeing someone in pain. The Gaucher and Parkinson's disease are having a grand uninvited "pain party" in my body and I have been advised to go to a special Pain Clinic where hopefully they will be able to prescribe me something suitable for long term pain management. Anyone with Parkinson's can relate to the stiffness and rigidity that are classic painful manifestations of the disease, which unfortunately do not get easier as time goes by. Add to that bone pain from the Gaucher's and you have a blended cocktail of agony. Exercise, if one is able to stick to some sort of regime is the best way of warding off this downhill spiral and keeping as mobile as possible. Having Gaucher, I am limited in the exercise I am able to safely do without damaging fragile bones and joints, so I find myself in a bit of a catch 22 situation. Gaucher and Parkinson's are definitely not a good combination, and one antagonises the other. Professional pain management can improve quality of life so it's well worth going to a Pain Clinic where they specialise in this field if you are suffering chronic pain on a constant basis.

Cognitive Test - September 10th 2012

Embarrassing as it is, a cognitive test is a necessary process enabling your doctor to have a base line from which to work. Although highly demeaning and no one likes to feel belittled, a cognitive test is a good way of assessing one's mental capacity. Repeating the test a year later shows indications if there is decreased mental ability. Occasionally I must admit I can feel that my attention span is short, and sometimes I have difficulty finding a word (despite being a chatter box by nature). Slowness in thinking and memory loss are also noticeable, so family and friends are becoming very forgiving of my mistakes. Being tolerant and patient with someone who has Parkinson's is very important. It's bad enough battling this disease day in day out, feeling like one is "losing it", but on top of that to have someone make you feel like an idiot, when they are acutely aware of your failing mental state, is simply cruel. A lack of tact or thoughtless negative comments can have tremendous detrimental effects on someone with Parkinson's. Keeping cheerful and having positive thoughts and surrounded by good energy is the best defence to battle against this rotten disease.

Mental Health - September 11th 2012

All chronic diseases have various elements, one being mental health issues, which often get overlooked, especially when the physical symptoms of chronic disease can be so disturbing and clearly visual. I think it is important, as a patient and even more so as a caregiver, to try and be aware of mood changes, noticing alterations in character, and any anxiety or worried thoughts which may actually cause physical distress. It is imperative for Parkinson's patients to remain as calm as possible, in a stress free environment, but clearly living in today's world, this is not always feasible. However it is essential I believe, to at least be aware of the situations or times that make you more anxious, and see if anything can be done to alleviate these moments. Depression should also be taken seriously and if signs appear of sadness and a general lack of interest, this is a very common and normal symptom of Parkinson's. Do not be embarrassed to discuss these matters of mental health with your family or your doctor. There is nothing shameful, and with a wide range of medications on the market today, a suitable solution may be found and alleviate this symptom. Parkinson's has so many different unpleasant symptoms and speaking as a sufferer who experiences a full array personally; if you have the ability to remove even just one symptom– it could make a real difference to your quality of life.

My warrantee has run out! - September 12th 2012

I want to lodge a complaint; to whom, I'm not exactly sure, but this body of mine just doesn't work properly, and my warrantee has run out, as if I ever had one in the first place! When your stove, fridge or mobile phone stops working and need to be fixed, if the said item is still under warrantee, you simply return it to the shop and hopefully they are able to fix the problem or you receive a new replacement model. Wouldn't it be wonderful if you could do the same with your body? Just imagine going into a clinic and saying, "I'm dissatisfied with this body; it doesn't work properly, it's got Gaucher and Parkinson's. I'd like to exchange it for model that is healthy, and if you can give me an upgrade at the same time, that would be great!" This non-existent futuristic clinic (a crazy thought, but I'm sure you also wish one existed) would try to fix the glitch. Unable to, they would simply give you a new body. The phone companies, when issuing you a new phone, transfer all your numbers and data over to the new version, so this imaginary clinic of mine would take my spirit and soul and transfer it into a healthy working body. While they're about it, maybe they could make me a couple of centimetres taller and remove those extra few kilos that I just can't budge! What do you think? I think I've been watching too many science fiction movies!!! Don't worry I haven't gone crazy, it's just that at 02:15 when one can't sleep, I guess some strange ideas come into one's mind!

Getting forgetful - September 13th 2012

It appears of late, that I have forgotten several important dates and find this most annoying, since I always used to remember everyone's birthdays and anniversaries off by heart. Is it the aging process or Parkinson's, or simply too much going on in this head of mine? Anyway, if I've forgotten your birthday, anniversary or something else – I do apologise. I was at a regular check up with my neurologist the other night, and whilst sitting there, the alarm went off on my mobile phone to remind me to take my pill, which of course I had forgotten to carry with me! We had a good laugh (at my expense), and needless to say there was no need for the doctor to ask about my memory! Although I was diagnosed with Parkinson's five years ago, and have been on various medications since, I am still constantly surprised at how a neurologist can finely tweak one's regime of pills, which can make quite a difference. The doctor listened attentively and very patiently whilst I wriggled on the chair reading the things I wanted to tell him from my list, that he has now become accustomed to seeing upon each of my visits. By him simply changing the timing of my medications and just adding an extra half of one pill a day, last night I slept for six hours and awoke not feeling groggy! I can't tell you how wonderful it was to wake up and see that it was already light outside, knowing I hadn't been sitting for hours, as I do most nights, in the middle of the night writing at the kitchen table. I am quite sure he doesn't read my blog, but on the off chance he is today – I just want to say THANK YOU!

Free Book - September 14th 2012

To celebrate writing my blog for an entire year, the complete entries have been turned into a book entitled: "I'll Blog Till I Drop" which you may download for FREE from Smashwords.com in whatever format you need. Once you are on smashwords website, type "Elaine Benton" in the "search" box at the top right hand side, which should take you directly to my page. Please pass this on to anyone you know who is suffering Gaucher, Parkinson's or any chronic disease, and caregivers. My intention is to spread the word, offer support. You can help me create greater awareness simply by downloading my free book and passing on this information to anyone who may benefit. It's a lonely fight, a solitary soldier battling Parkinson's alone, but together in numbers we gain strength and can be triumphant.

Handle with care – September 16th 2012

I've always had difficulty in travelling, especially flying, sitting in cramped conditions, almost unable to extricate myself from my seat, particularly when the passenger in front of me decides to recline and sleep practically in my lap. As with a good bottle of Merlot wine, I do not travel well. However, I'm starting to think that I should have a label around my neck, not dissimilar to Paddington Bear, (a children's much loved fictional character) who wore a label that read "please take care of this bear", but my label would say "handle with care". I have an old dish in the shape of an apple that has been cut in half that I use to put honey in when serving at the table, but noticing a slight crack in the fine bone china, I am hesitant to use it. It's still lovely, holds sweet memories of all the years I have used it, but now in its delicate state, I handle it with care. My old china bowl and I are no longer shiny and new, and our glorious youth is in the past, but we're still here, and continue to bring a smile to those around us. Life doesn't stay the same, it is constantly changing for us all, but I hope and wish that life remains sweet; may you follow your dreams, be blessed with good health and find the peace and happiness we all long and search for.

The Thought Broiler - 19th September 2012

I have come across some amazing people over the last year or two, many of whom are doing incredible work, either as a professional business, or like myself on a voluntary basis, and campaigning for a cause that lies close to their heart. When the world seems to be in such chaos, it gives one hope and is heartwarming to be in contact with people striving for a better tomorrow. I came across a website run by Susan Placek who began The Creative Idea Shop and who is co-owner of "The Thought Broiler". Susan has very kindly let me appear as a guest blogger on this inspirational site that posts only uplifting, positive subjects that reach out to people. Susan's favourite saying is "if given lemons, make lemonade", and I too love this sentiment, for it is one of the lines that I used in a poem for "Parkinson's, shaken, not stirred".

"If given lemons, make lemonade,

How true a saying is this?

I enjoy the life, that I have made,

No opportunity or moment missed."

(An excerpt from the poem "Battles" Written by Elaine Benton © 2011)

J. Conrad Guest - September 20th 2012

I have been in contact with the esteemed author J. Conrad Guest whose successful career has so far produced many wonderful novels such as : The Cobb Legacy, One Hot January, January's Thaw, Backstop: A Baseball Love Story In Nine Innings to name just a few. I want to share with you a beautiful paragraph, I found poignant and poetic that Conrad wrote:

"Strange how life unfolds. When we're young we see life as limitless. Like the morning sun climbing the sky, we grow stronger each day until we can't help but believe it will always be so, but declining at the moment we reach our own zenith, to approach a rapidly approaching horizon, to eventually dip beneath it, our hope and belief that we will again arise, even if on some other plane of existence."

Apart from sharing a love of books and writing, we found that sadly we have something else in common; Conrad's beloved mother was diagnosed with Parkinson's at the age of 52. As many of us have found, the tables turn at some point in our lives, roles are reversed and our parents who once competently took care of us, need us to care for them. Conrad has written with great honesty a heartrending piece about his mother's decline with Parkinson's, demonstrating the love between mother and son. Conrad would like to share this story which appears on his blog entitled "Mother's Day", (you'll have to scroll down to the third page). If you have PD or are a caregiver, you will relate completely to what he has written. Please feel free to leave a comment on his blog.

Caregivers are heroes – September 21st 2012

I want to acknowledge anyone who is a caregiver, for it is a thankless position that can't be added to one's curriculum vitae, nor does one receive job satisfaction or financial reward. The hours are long; constant challenges tiresome, no vacation or time-out, it is a 24/7 job. There is no course or studying to prepare the caregiver for what lies ahead, and no diploma awaits, despite the wealth of knowledge and life experience unwillingly gained along the way, that would suffice for a university degree. It's the kind of appointment that one didn't ask for, never dreamt of taking on, and yet many around the world, tirelessly day in and day out perform their newly given task of caring for a person they love. Often family and friends are unaware and barely know what a caregiver goes through. The mental anguish alongside the daily logistics and physical work involved with taking care of someone who is chronically ill, takes great strength of character, devotion, much patience, a sense of humour and a lot of love to fulfill this unwelcome task. If you are a caregiver – you are not alone, for there are millions of people who stand in your shoes, and I applaud you all. Stay strong and take one day at a time. Remember that you are a hero!

"Parkinson's, shaken not stirred" on radio - 23rd September 2012

I gave an interview on Triangle Variety Radio, an Internet Radio talk show that has a programme called "The Author's Corner" hosted by Elaine Raco Chase, which is aired every Thursday night between 8 - 11 pm Eastern Time. This prime time station is based in Person County, North Carolina/USA; having over 40,000 Google hits, so clearly a growing and popular show. The talk show is aired live; several guests on line together with Elaine, along with pre-recorded interviews due to time differences. Elaine interviewed several up and coming authors, and the questions and debate was lively and entertaining, hearing directly from those who love to write, what spurs them on in such a difficult industry today, and how the entire publishing business has changed over the years due to technology and in particular the electronic book. The question of audio books appeared a hot topic, particularly for those with impaired vision. Elaine introduced me and spoke about my mystery/adventure book (fiction) "Slipping Through Time" and then went on to interview me about my book "Parkinson's, shaken, not stirred", available on Amazon, the book "I'll Blog Till I Drop" available FREE on Smashwords.com and my most recently published book "A Silver Lining" (also available on Amazon), about living life to the full despite suffering two chronic diseases. If you would like to listen to the show click on this link. The show is over two hours long, and I am introduced towards the end (I come on at just over two hours into the show) The link shows the time in minutes, and I start at around 122 minutes if you want to use the slider to fast forward to my interview (which is approximately 8 minutes long). I hope you'll listen to the POD Cast and enjoy the show. Thank you Elaine for having me on your show.

10 Things not to do - September 24th 2012

Everyone has a "to do list" – well at least most of us, but how many have a "not to do list"?

Don't leave a glass perched dangerously close to the edge of the table.

Don't buy more ice cream, as you know who'll finish it again.

Don't try getting dressed when still damp from the shower – it's just impossible.

Don't let your family leave the house in a hurry in the morning before you've dressed, otherwise it's all day spent in pajamas!

Don't walk too close to the dog's water bowl – the floor is slippery.

Don't walk on a crowded pavement. No one notices you're lack of balance.

Don't forget to take medication, otherwise memory fails and I'll repeat no.2 on this list!

Don't attempt painting fingernails again – big mistake.

Don't put a cake in the oven and forget to set the timer.

Don't assume everyone else has also lost their sense of smell !

Now for something to put on your "to do list" - an entry from my blog appears on The Itima blog site, so you are welcome to take a look and leave a comment.

To err is human – September 25th 2012

"To err is human; to forgive, divine" is a well-known quotation from an essay written in 1709 by Alexander Pope. How many times have we heard this, but do we really take it to heart? No one is perfect, everyone makes mistakes; doing what we think is best at the time, making a decision in haste without thinking about the repercussions, or simply speaking without thought or consideration for the other person. We are all guilty at one time or another of small indiscretions, but this is part of what makes us human. Realising we've made a mistake and owning up to it, making amends where possible takes guts and maturity enabling one to move forward. Holding onto old wounds, anger or bitter feelings ultimately only causes damage, and is an unhealthy negative cycle. By letting go and forgiving, you in fact release yourself from that burden. I have the habit of speaking the truth; it's in my nature. If I can't say the truth, I would rather not speak at all, and sometimes this is not received well, so if I have offended someone by being brutally honest and truthful, I apologise. A new day can be a fresh start – it's never too late to turn a page and begin anew. Life is not simple, relationships are often complicated, and the road on which we travel can be a bumpy unpredictable ride especially when suffering chronic disease. I wish you all good health.

Answering your questions - September 27th 2012

I have been flooded with questions, all basically about the same topic: insomnia. Clearly a lot of Parkinson's patients our there are suffering from this most irritating and exhausting symptom. Forgive me for answering you all together in today's blog, for I usually answer every e-mail personally, but typing is becoming difficult for me and writing the same reply to 23 people seemed a little silly. I am not a doctor and have no medical training, and just want to make it clear that I am simply a patient who is sharing information, useful tips and my personal experience with you. Every patient is different, so what medicines work for me, may not necessarily work for you. In answer to your questions: The pill I take at night is called Clonazepam (generic name), which I now take one hour before I retire. I had been taking it too late at night and it was therefore not as effective. The Dopamine also has been spaced out at four hourly intervals during the day, making sure I don't take it too close to eating food, in particular protein. I try and wait a whole hour after taking the Dopamine before eating. Sometimes this cannot be avoided, if one is going out or eating at someone's house. I am in the fortunate position of being under the care of a very good neurologist, and whenever he suggests a change of medications or schedule, I know that he has my best interest at heart. Thank goodness, this combination is working and I am sleeping around 6 hours a night now, instead of 2 or 3 hours! A huge difference!!! If you are suffering insomnia, speak to your doctor on your next visit and ask what changes you can make to help alleviate this symptom.

Michael J. Fox Interview – September 28th 2012

In a rare personal interview, Michael J. Fox, who was diagnosed with Parkinson's at the age of 29, tells us of his journey and how even if he could go back in the De Lorean Time Machine (from the film "Back to the Future"), he wouldn't change a thing. Our destinies are not always what we would have hoped for or imagined, but Michael has embraced Parkinson's' with the aim of raising funds to find a cure, and through a new television show "Curb Your Enthusiasm" with his unmistakable humour and charisma, brings greater understanding to the general public of this life changing disease. Please take the time to look at this link, and pass it on to as many people as you can to raise awareness. I have a small voice, but luckily with a well-loved celebrity such as Michael J. Fox speaking for us all, Parkinson's has been given a world stage to get the message across. Keep up the good work Michael, and as a fellow sufferer, I congratulate you on your strong determination, drive and initiative. You have brought us many hours of pleasure through films and television, and are now possibly doing the most important work of your life. You give us hope!

The sandwich generation - September 30th 2012

We are often called the 'sandwich' generation, for whilst still bringing up our own children we find ourselves additionally taking care of aged parents. My daughter may beg to differ, for she has unfortunately received a double dose, and possibly a 'double decker' sandwich would be more fitting a title in her case. My daughter helped me take care of my mother as her health declined due to dementia which pushed us all to our limits despite our love and devotion to her, and unexpectedly now finds herself for some years also looking after me whist I battle Gaucher and Parkinson's. Being a child with a sick parent is not an easy position to fill and part of her childhood inevitably has gone by the wayside. A child grows up awfully quick, learning life skills and taking on responsibility that far outreach their age or level of experience. I have seen this in other families who are in similar circumstances, and there is a huge difference in maturity and abilities that most children with healthy parents are not exposed to. I often feel guilty that she has not lead a normal care free childhood, but what she has gained is beyond measure; a wealth of experience that has prepared her for almost anything life should throw her way, making her a remarkable young woman.

Parkinson's puts you to the test - October 1st 2012

Parkinson's can really put you to the test and becoming forgetful tries the patience of all around you. It is highly frustrating not being able to do what I once could, and the realization can suddenly bring out sharp words that normally would not be uttered, which are not aimed at any particular individual, but rather at the disease itself. Unfortunately anyone in the firing line gets shot at even if not deserving. The entire scary metamorphosis that a Parkinson's patient goes through as the disease ravishes one's brain and body is beyond imagination, and terribly harsh for family and friends as they watch the person they once loved slowly change before their very eyes. In contact with other fellow sufferers, I know I am not alone when it comes to adjusting to new circumstances. I realise that I can't do what I used to, but somehow this doesn't always register, and I'm still under the impression that I can whip up a three course meal in a flash, whereas in reality, it takes me all day just to make one simple dish, or bake a solitary cake. It's not a matter of being in denial, but it's just extremely hard to fully embrace and comprehend my lack of ability in areas where I was once so competent.

Living conditions - October 2nd 2012

When young and carefree, not in a million years would I have thought that at the age of 44, Parkinson's would be ruling my life. No longer in control of this body, I had the audacity to think was mine, it is possessed by a mischievous demon that shakes and tremors tormenting me night and day. If this is an initiative or endurance test, then I wonder how I'm doing. How much can the body and spirit continually endure? Due to unforeseen circumstances we have been waiting over six years to move into a house that has been especially designed with my disabilities in mind. Finally there is light at the end of the tunnel and we are sitting amidst packing boxes, our apartment resembling a warehouse. We are living in chaos at present, and I crave peaceful surroundings, and to feel a sense of order and calm in the home. For too long chaos has reigned, injecting its own form of stress, being housebound most of the time, our present unsuitable conditions grate on my nerves, almost like hearing the piercing screech of chalk on a blackboard. My nerves are raw, exposed and sensitive; the waiting has been intolerable. However we are drawing close to moving and life will be considerably easier and more comfortable for us in our disabled friendly new home.

Gardening therapy - October 3rd 2012

I enjoy gardening, or rather I should say "pottering about", for what I lack in knowledge or skill, I make up for with great enthusiasm. I find it highly therapeutic being out in the garden and can lose track of time quite quickly. My husband is building me raised flower beds so that I can easily reach, whether standing or sitting in a wheelchair. We not only measured the height, but also the depth so that each flower bed is no deeper than the length of my arm. I get a great deal of pleasure from being in the garden, and although I don't have a particularly green thumb, by sticking to plants and flowers of a hardy variety, they should manage to survive my inexpert "care"! If you don't have a garden, with a little forethought and ingenuity you can turn a courtyard, balcony or even a window-sill into a miniature garden, bringing the outdoors inside. I'm not saying gardening is therapeutic for everyone, for some may see it as a chore they dislike intensely. Just thinking of planning what I want to plant and being taken to the nursery to purchase the plants will be a lovely project I look forward to. And on the rainy cold days when I'm stuck inside the house, I'll still be able to look outside and admire my handiwork. A little light gardening doesn't require great dexterity, and is something I can still manage to do. As one's abilities constantly change when suffering a degenerative disease, finding things to occupy oneself, hobbies or even simple chores become a very important part of one's day.

It's not what you say - October 4th 2012

They always say "it's not what you say, but how you say it". A well-meaning lady spoke to me at a function recently, and leaning close, just inches away from me, I could feel her breath on my face. She had obviously missed the lesson on social etiquette and why it is considered rude to invade someone's "personal space". But for now we'll forgive her stepping over the boundaries of what is socially acceptable. I sat pinned to my seat like a mouse caught in a corner with a cat on the prowl – I had no escape route. Peering down at me, in a voice one normally reserves for very young babies or admiring cute puppies, she asked in a sickly sweet tone "do you remember me?" Staring back at her, I was wondering how anyone in their right mind could possibly forget this woman. But my good upbringing and polite British manners prevented me from saying this! I wondered if she had the slightest idea of how condescending she sounded, and how ridiculous her intonation was; which I found not only irritating but highly demeaning. She continued to speak slowly and clearly as if giving directions to a tourist who didn't speak a word of English, gesticulating wildly as if this would help me understand. I sat dumbfounded, and thankfully she quickly ran out of things to say, and having done her good deed of the day by talking to the poor disabled person, she excused herself and trotted off, to no doubt invade someone else's personal space! Clearly this lady has never read any of my books or heard me public speak to a full auditorium. When will people understand, that being chronically ill, doesn't mean you've lost your marbles?

A Silver Lining – October 5th 2012

Thanks to Parkinson's "gift" of insomnia, over the last year I've had plenty of time to write in the middle of the night, when the house is peaceful and quiet. The only sounds to be heard are the humming of the ceiling fans, an occasional moan of the fridge accompanied by our dog snoring at full pelt. This is the best time for me to write; uninterrupted, I sit at the kitchen table while the rest of the household are fast asleep. I have just finished writing another book entitled: "A Silver Lining" which is my story of growing up with Gaucher disease, and battling Parkinson's, whilst remaining positive and living life to the full. Although there is a serious undertone to the book, I have included many humorous true stories which have happened to me over the years, making this book light reading and hopefully bringing a smile to your face. "A Silver Lining" is available through https://www.amazon.com/author/elainebenton or if you do not have a Kindle you can download a free Kindle application that will enable you to read my book on a regular computer. My book is also available for other e-book readers through smashwords. I hope you enjoy my book, and please feel free to leave a review or comment.

Counting sheep - October 7th 2012

Here is an excerpt from a poem entitled "You've got to laugh" taken from my book "Parkinson's, shaken, not stirred", which inspired Denis Shifrin, a professional artist and cartoonist to draw a caricature of me counting sheep. Thank you so much Denis for understanding and capturing the humour which gets me through tough times. This caricature appeared in an article about me speaking at The First International Congress of Narrative Medicine and Rare Diseases in Rome earlier this year and was featured in the September edition of the ESRA Magazine. (Reprinted with kind courtesy of ESRA Magazine)

My mind, begins to wander, for concentration, hard to keep,

I write everything, in my diary, and constantly, take a peep.

To make sure, I've not forgotten, something, that I had to do,

Was there somewhere, I should have been? I wish I had a clue.

Whilst in conversation, I digress, quite lost I get,

No longer sure, what I wanted to say, seem to forget.

I can no longer read a novel; I quickly lose the plot,

My memory, like a sieve, grey matter seems shot.

I clamber into bed at night, I start counting sheep,

My mind begins to wander, for concentration, hard to keep.

Written by Elaine Benton © 2011

Book for Caregivers - October 8th 2012

Sharing information is what it's all about when suffering any chronic disease. A marvellous lady Sherryl, who is a resource for those fighting Parkinson's, has much experience and good advice to offer, spoke about a book that sounds like a "must" for any caregiver, and in the spirit of supporting each other, I am wanted to tell you about this book I didn't know existed.

The Caregiver Help book is designed to provide caregivers the tools to increase their self-care and their confidence to handle difficult situations, emotions, and decisions. These tools will help caregivers to:

• Reduce personal stress

• Communicate effectively with family members, doctors, and paid help

• Practice self-care

• Reduce guilt, anger, and depression

• Experience relaxation techniques

• Make tough decisions

• Set goals and problem solve

Thank you Sherryl for your continued support that you give everyone in the community and the helpful recommendations you offer. Keep up the valuable and good work that you do.

Sibling similarity - October 9th 2012

I have sadly lost two brothers, but thankfully still have two others, one of whom shares my fate in being born with Gaucher disease. I have often heard of the term "sibling rivalry", but being the baby of the family, I'm glad to say I have no first-hand experience of this. I feel particularly close to my brother with Gaucher, which I'm sure would come as no surprise to you, for we unfortunately share so much in common, understanding each other far more than anyone else could possibly imagine. I treasure our relationship, feeling close to each other, we are able to honestly discuss the most intimate of issues and without much explanation or lengthy discussion, know exactly what the other is trying to say and is experiencing. There have been many occasions where we both suffer the same bone pains in the same place at the same time; uncanny, unlikely? a little strange, but nonetheless true. I'm sure a doctor would have a hard time explaining this, but our close bond that invisibly ties us together is inexplicable and goes beyond comprehension. Both of us have the "happy gene" that I have spoken of, and although this gene does not really exist, it is the best phrase that I can come up with to explain our strong fighting spirit, dry British sense of humour and a determination to stay cheerful despite our daily fight against chronic disease. If you think having Parkinson's is bad; try adding Gaucher disease into the equation, and see how you would fare. I wouldn't wish this horrendous combination on anyone.

Talk in London - October 10th 2012

Tonight I will be giving a talk at the Parkinson's Support Group in London, and members from the British Gaucher Association who are interested, have been invited to join in for the evening. I intend resting all day, so that I will have enough energy for tonight's speaking engagement. I look forward to seeing the organisers again, a charming vibrant couple who started this particular Group some years ago, and have been doing an amazing job, and to also meeting fellow sufferers. Who knows, maybe I'll even come across another patient like myself who has both Gaucher and Parkinson's. It takes a great deal of energy both physically and emotionally to speak in front of an audience when chronically ill, but I will continue public speaking for as long as I can. Hearing a patient talk to a group, from personal experience with Gaucher and Parkinson's disease, is totally different from listening to a doctor's speech; a person from a fundraising organisation, or simply reading about this topic. To see a patient, and hear firsthand what it is like to live with Parkinson's gives a completely different perspective, one which fellow sufferer's and caregivers can relate to, and for those who are unfamiliar with the disease, valuable information they might otherwise not have heard. The last time I gave a talk, I was asked if I would like to sit down, but I remained standing, despite the pain in my hips, for I have found delivering my message, holding the attention of the audience and making eye to eye contact, is much easier to achieve when standing. I see public speaking as an important way of raising awareness of both diseases. If you are coming along tonight – I look forward to seeing you, I know it will be an interesting evening.

Public speaking in London - October 11th 2012

Today I am very tired, but this was only to be expected. Last night was a late night but filled with adrenaline I kept going the entire evening. I would like to thank Caroline and Mark for hosting the evening, which turned out to be most successful, and I hope all those who made the effort to attend the Parkinson's Support Group in Finchley enjoyed it, along with members from the British Gaucher Association. It was lovely to meet everyone and great to see some familiar faces that I have not seen for some time. Having the luxury of being able to attend a support group is not to be taken lightly, for where I live; there is no young Parkinson's support group in the vicinity. Meeting and speaking with others who are in the same boat is invaluable and feeling not alone; belonging to some sort of extended Parkinson's family gives one a sense of belonging to a community, that although one would rather not qualify for, nonetheless sustains us through the bumpy journey of life, and having this support whether a sufferer or caregiver is vital. The time and work that Caroline and Mark have put in over the years is evident, as this appears to be a very successful active Support Group, and I wish you continued success and thank you for having me as your guest last night.

Who doesn't love honey? - October 12th 2012

When I think of delicious honey on hot buttered toast, it summons up a picture of "home" – comfort food, something familiar and safe. It was A.A. Milne, who wrote the children's book "Winnie the Pooh" which has remained a firm favourite of the general public over the years and translated into many languages around the world. Winnie, was actually a female Canadian black bear who really existed and originally shipped from Canada to England in 1914, ended up living in London Zoo where A.A. Milne would take his son Christopher to visit the animals. Today there remains a statue of this famous little bear. I always maintain that one should make the most of each moment and enjoy life to the full. I think that A.A. Milne must have had a similar philosophy for his well-loved character appears to make the most out of any sticky situation he finds himself in. This simply delightful character sees each day as a new adventure, a fresh start, and every day is his favourite day! What more positive or cheerful a character could you find? I think it is evidently clear that A.A. Milne must have had the "happy gene" in order to create the enchanting Winnie the Pooh.

Shop service - October 14th 2012

I needed to buy a birthday gift for a friend, and a shop conveniently located nearby has a large range of presents to suite any taste at varying price ranges. The door of the shop has an enormous heavy metal frame with large thick glass panels, making it weigh a ton. Shuffling as I do in my ungainly Parkinson's "walk" with a crutch to keep my balance; I was not going to be defeated by a door. I tapped on the glass pane and caught the attention of a saleslady inside, who quickly came to my assistance and opened the door for me. She smiled politely and I began to search for a suitable gift. There were many cut glass vases and delicate breakable items on display, all pretty and eye catching. I picked up a small glass dish and as I placed it back down, I heard an audible sigh from the saleslady I had been unaware of, but was standing right behind me. She asked me if I was looking for anything in particular and maybe she could help. I suddenly realised that she had been observing my unsteady walking, the shaking of my hands, and that I looked like an accident waiting to happen! Seeing her anxious expression and realising she indeed had a valid point, I told her what I was looking for and she led me over to the counter where there was a comfortable seat. Once I was seated and safely away from all the breakables, she brought over several items to show me, one of which was perfect, exactly what I was looking for. Pleased she had a satisfied customer, she gift wrapped the present beautifully, I paid and she opened the door for me to leave. My mission accomplished, this perceptive sales lady had been most helpful in a tactful and considerate way without offending my feelings.

Bathroom washbasin - October 15th 2012

Choosing new bathroom fittings especially with disability in mind can be a bit daunting. Wanting to make the right decision, knowing how important to get these things right, my husband and I had spent quite some time in a shop looking at various bathroom washbasins. Originally wanting one with a marble counter and cupboard beneath, this clearly was not going to work, as thinking of the future, if and when the time comes that I am completely wheelchair bound, it would be nice to at least be able to sit comfortably at the washbasin giving me the opportunity to do as much for myself as I can. It was clear that the washbasin had to be the old fashioned type that is affixed to the wall, and has no cupboard underneath. The salesman brought out several catalogues, and much to our amazement and delight, there were a few washbasins that had a disabled sign by the side of the page, indicating that these were suitable for my needs. What was very interesting, and something we had not seen before, was that the normal U-bend and piping that is fitted under a washbasin, had been modified making it much smaller, neater and takes up far less room, enabling someone in a wheelchair to get right up close without any plumbing paraphernalia in the way. It's nice to see that slowly changes are being made in every sector of daily life. Not just ramps and lifts in places where once there were none, but a manufacture of bathroom fittings who had taken into consideration the needs of those in wheelchairs.

A magical product - October 16th 2012

I am not normally in the habit of advertising or mentioning brand names, but coming across a product recently that astonished me, I feel compelled to share it with my female readers. Sorry to any men reading today's blog as this probably isn't of much interest to you. However, I more than likely have now spiked your interest to know what product I am about to divulge. I've often found that in company, if I speak particularly quietly or whisper to another woman about something in confidence; suddenly the men pay attention, so I guess I've caught your interest now! Millions of dollars every year are spent on anti-ageing or anti-wrinkle creams, and I was given a present recently of a balm that literally tightens those lines and winkles that give our age away. I'm 49, and naturally have a few lines on my face. Applying a tiny drop of this "magic" cream before putting on any other make-up to the areas of my face in need of some help, I looked at myself in the mirror and was astounded to see before my eyes the wrinkles decrease in prominence, giving my face a much smoother slightly younger appearance. I'm not saying it would work on someone in their golden years with very deep lines, but for my age group – it works astoundingly well. So you may well now be asking – what's the name of this wonder product; it is Clarins Beauty Flash Balm. It's not cheap, but it's worth every penny as it most definitely works!

The House of Commons - October 17th 2012

I was invited by a Member of Parliament to a private tour of the House of Commons so yesterday we made our way into the centre of London and had a marvellous interesting day seeing how Great Britain with its long history of tradition keeps the system running with true British pomp and ceremony. The magnificent architecture of the building where the British Government sit, is quite beautiful; glorious stained glass windows, amazing grand stone carvings everywhere you look, decorated ceilings, statues, historic portraits and in particular the Royal Robing Room were richly adorned. The Queen opens Parliament once a year, and her throne where she sits to perform this duty, is intricately decorated in gold leaf and was incredibly opulent. The impressive building has been made disabled friendly, and we had no problem with my wheelchair, as there were ramps and lifts enabling easy access. I was very impressed at the thought that had gone into accommodating the needs of disabled persons, and if you are visiting London and want to take a guided tour, take a look at this link. The Westminster Hall dates back to 1090, and is the oldest original part of the Houses of Parliament. It was a very interesting morning, seeing a side of Britain that I have never seen before. We sat for a few minutes in the Gallery watching the proceedings after which we had a lovely lunch. I would like to say "thank you" to the Member of Parliament for a wonderful day.

Throwaway society - 18th October 2012

In our "throwaway society" which I find most disturbing and goes against the grain; I rebel and try to be as 'green' as possible, but it's an uphill struggle. My mobile phone decided to give up the ghost and much to my regret I had to get a new one. I bought the same model I had before as it's the most basic simple phone one could find, and importantly, the buttons are easy for me to use, with a large ridge around the phone, it flips open effortlessly despite poor dexterity in my fingers. What happened to electrical items that would continue to work for years, and if they did eventually break, one didn't think twice about not having them fixed? There were always little work-shops where televisions, radios and such could be mended. Today I find it hard to accept that when a printer or microwave stops working, it is less expensive and ultimately quicker to simply throw the old item away and replace it with a new one. I don't think this un-green logic can be justified, yet one might say I am guilty of being hypocritical to a degree, for when it comes to sterile medical equipment, I am more than happy that the items are disposable. The standards of hygiene can be kept first-rate due to throw away needles, and a whole array of small medical equipment used daily around the world. So while it pains me to throw away my old phone because no one will fix it, I am happy to know that every time I receive my I.V. enzyme replacement therapy for Gaucher disease, all the equipment is new and for one time use only.

Parkinson's global family - October 19th 2012

An experienced doctor of the highest caliber, despite spending years specializing in a particular field; can he really visualize and understand what it's like to live with a degenerative disease 24/7? Unless standing in a patient's shoes, it is impossible to grasp completely the daily complexities encountered with chronic disease. Parkinson's, like many neurological diseases, continually persists, never gives up, there is no "time out" or parole for good behaviour. I've long forgotten what it feels like to feel no pain, to move my body freely, walk briskly or dare to run. How I miss those simple pleasures I took for granted when young in my care free days. I mourn the parts of me I've lost, my abilities and activities I can no longer do, and things I will never see. Left with no choice, I embrace the "new me" as this is all I can do. I'm someone slightly different – a re-vamped Elaine, still fundamentally "me" yet changed in so many ways. As strange as it may sound, some things have changed for the good. I no longer worry what people will think of me, or that I need to put on the graces. I have been given the opportunity of being "free" to speak out, to connect with others I may have never had the pleasure to meet, to be part of something so much bigger than myself, part of the global Parkinson's family, all fighting for the same cause. Each of us can make a difference, together in numbers we have strength and the power to bring about change.

Goat Farm – October 21st 2012

Experiencing a bit of "cabin fever" my daughter decided to get me out of the house. Living in a rural area, just five minutes' drive away is a small goat farm where a family run cottage industry produces a delicious array of cheeses and yogurts. Driving down a narrow dirt track, a dazzling display of brightly coloured bougainvillea spilled from each side cascading down to the ground like a waterfall of blossoms. We arrived at a clearing surrounded by trees, and to one side was a shaded fenced enclosure for the goats of varying colours that were busy grazing. There were several young goats endearingly snuggled next to their mothers, and apparently a rather strong smell was emitting from this direction. Thanks to Parkinson's I couldn't smell a thing, so I continued to watch the goats unhindered by the scent, whilst my daughter hurried off to the little shop which was air conditioned and odor free. We tasted several of the cheeses, and again my nose failing me, I found it hard to tell the difference between the various cheeses. A strange scenario; outside I had benefited, not being able to smell the goats, yet inside the shop tasting the cheeses I was at a clear disadvantage, without my sense of smell, my taste buds were noticeably affected, and I couldn't appreciate the subtle differences between the cheeses we tasted. I guess this just goes to prove that every situation has its pros and cons. I presume you can guess what we're having for supper tonight!

A Comfortable Bed – October 22nd 2012

The comfort or lack of, our regular bed at home leaves much to be desired, despite being an extremely high quality orthopaedic mattress. As the Parkinson's progresses, and with the additional problems of Gaucher, my sleep is far from restful or comfortable, and moving positions in bed or getting up unaided is becoming increasingly difficult. Having flown recently for a family wedding and speaking engagement - experiencing the comfort of the electric adjustable seats in business class, made me start to think what we could do to improve my quality and comfort of sleeping at home in our own bed. This prompted in-depth research into electronic/adjustable beds. The price range and different variations on offer are vast, from the extremely expensive with a wide array of possible positions - to simple versions and less expensive, but equally effective. Although each mattress of a double bed has to naturally be separate enabling each person to individually adjust their side of the bed to a suitable position, the two mattresses are in fact held together within a frame ensuring that the bed functions as a double bed, especially for those who still like to snuggle up or spoon! There are many companies making such beds, and searching on the Internet, you're sure to find a company in your area. Although this is an expensive purchase, I believe it is money well spent.

Getting older – October 23rd 2012

Sometimes having one's health torn away, is like a huge wake up call. I hear so many people complain about getting older. It occurs to me that if one is blessed with good health and longevity, it is not a "right" to grow old but a "privilege". The thought of growing old doesn't scare me at all, as I greet silver grey hair, laugh lines; hopefully tempered with the wisdom and experience gained over the years. I welcome each passing year as a blessing with open arms. No one wants to spend their "golden years" in poor health, but with today's advancements in medicine, there is no reason to waste unfounded worry for fear of something that may not happen as one gets old. I would be privileged to reach a ripe old age, hopefully with my marbles intact. At a local retirement home, there are many residents in their senior years, some well into their nineties who still enjoy a good quality of life, activities and a busy social life. It's wonderful to see these vibrant and valuable examples in our community of what growing old can be if in good health with a sound mind. So don't stand in the shadows or on the side lines, get in there and enjoy your life; let your hair down, be all you can, and with courage of conviction do what you were intended to, follow your destiny. Grasp life with both hands and make the most of this ride!

Hospital Check-up - October 24th 2012

Having the misfortune of being born with a rare chronic disease (Gaucher) and diagnosed with Young Onset Parkinson's at age 44, I am never short of what to do. Being chronically ill is a full time job! Kept constantly busy with doctor's appointments, prescriptions to be filled, physiotherapy, and all the challenges that are thrown my way, just making it through each day and night is an accomplishment in itself! Yesterday I spent the day in hospital for my regular six monthly check-up for Gaucher, and as I have often mentioned, this outstanding hospital with marvellous staff are well deserved of the high reputation they hold. I am indeed fortunate to be under such care, and never take this privilege for granted. At the Gaucher Clinic they have a Multi-disciplinary team, who work together providing the very best of care for the patients, and hold a weekly meeting to discuss particular cases or bring staff up to date with new information. Yesterday was a long day for me; a battery of tests which I undergo enabling the doctors to keep a close eye on my condition. On the way home, I naturally fell asleep in the car, and want to tell you of a little tip someone suggested. The last time we flew, a thoughtful airline stewardess, seeing my discomfort, gave me a small blow up pillow that fits snugly around the neck. When sitting in a chair, or in a car, using this pillow enables one to fall asleep, keeping the head in place, instead of flopping to one side and later painfully waking up with an aching neck. If you have one of these little pillows - they are great for car journeys, or if you take a power nap in an arm chair at home.

Inspiring - October 25th 2012

This summer, London was taken over by the excitement of hosting the Olympic Games, transforming a city, and in fact the whole country with a contagious enthusiasm bringing countries from around the world together in a united exciting event. In particular, the Paralympics were an inspiration to every generation. These athletes are a shining example of how the human spirit can overcome severe disability and drive forward to pursue dreams and reach goals some of us would not dare to attempt. The accomplishment of those sportsmen and women who took part was without doubt remarkable, and one couldn't help but be moved, and cheer each person on, no matter which country they were representing. The courage, strength and skill along with great determination lead them to participate in these games. Congratulations to those who went home clutching a coveted gold, silver or bronze medal; but in my mind every single athlete that took part, was a winner! So if you got out of bed the wrong side this morning, and are moaning or feel sorry for yourself, just take a look at the Paralympics site which may put things into perspective.

'Tell me a Story' - October 26th 2012

When I was growing up, there was a children's programme on BBC television called 'Tell me a Story' where Ian Carmichael, would read a story surrounded by a few young children sitting cross legged on the floor, listening attentively as he would bring to life the characters in his comical and engaging manner. This was my first debut on British television, as I sat wide eyed and entranced; my face was the opening shot of an episode as this programme aired in the late 1960's. Visiting my niece and nephew recently, reminding me of when they were little, how I would tell them stories; off the cuff, making up the plot and characters as I went along, and here I find all these years' later, writing stories that are being read around the world. My first fiction 'Slipping Through Time' has been well received and I am in the midst of writing another. I have always loved books and writing poetry and stories, and now in poor health, I find writing both therapeutic and in a way lifesaving. We all need purpose and structure to our days, and my love of writing keeps me focused and busy. If you would like to take a look at 'Slipping Through Time' you can read the first chapter for free on Amazon. Although I originally wrote this book for children, I am surprised at the number of adults that are reading it, but this often is the case, as so clearly illustrated with the wonderful Harry Potter stories, which appeal to both children and adults alike.

Stigma \- October 28th 2012

Facilities over the years have improved vastly for the handicapped, but there is still room for much improvement. It's not just facilities that need to be improved, but better understanding of disabled persons. I think the Paralymics was a perfect example of how despite being wheelchair bound, a person can still be highly intelligent, motivated, have determination and strength of character. Just because someone is in a wheelchair, does not mean their mental capabilities are less than anyone else. The all too often stereotypical assumption that physical disability is automatically put in the same category as mentally challenged persons needs to be addressed. I met a handsome young man a couple of years ago, who was about to start university and wanted to study law. He was sharp as a whip and had an engaging sense of humour and personality. Sadly this young man had been in a serious car accident and lost the use of both his legs, yet here he was about to set forth undeterred by his disabilities, to achieve his dream of becoming a lawyer. When people see a Parkinson's patient, what do they see? Making a hasty assumption before even talking to someone with Parkinson's, often the shaking and tremors, along with a masked expression and difficulty in talking can give the false impression that someone with Parkinson's is not entirely 'there', is 'out to lunch', not the sharpest tool in the shed'......I think you get the idea! The symptoms of Parkinson's can be unnerving to observe and I realise make some people uncomfortable, but inside this shaking, masked exterior is a vibrant person trapped inside a body that simply isn't functioning the way it should. Ignorance and lack of education are to blame and we need to ensure that future generations have a better understanding of disability. I sincerely hope that through my writing and public speaking, I can help in some way, remove the unsavoury stigma that still exists, but I am only one small voice, so join me in doing whatever you can. For I can promise you one thing, if you do nothing at all, then nothing will happen. Change can't happen overnight, it moves slowly, one step at a time, but together we can make a difference.

Why me? - October 29th 2012

Having been born with a chronic disease, I have always taken care of my body, and not wanting to sound like a goody two shoes or a prude, I have never smoked a cigarette in my life, I wasn't a curious youth so never took drugs, I didn't enjoy alcohol and it was of no interest to me. My diet when growing up was entirely wholesome home cooked food, some of which was grown in our own garden, and spending much of my youth outside in the fresh air, sailing in particular, I don't think I could have had a healthier upbringing. Yet struck down at the age of 44 with an aggressive form of Young On-set Parkinson's, clearly no amount of "clean living" can prevent certain diseases emerging. Whether a disease is inherent in one's DNA or from our modern day toxic environment – it's still not clear. It serves no purpose thinking "if only" or "why me", and coming to terms with something as life changing as Parkinson's, is to my mind, the only way forward. I continue to fight this rotten disease and refuse to give in, but at the same time accept its part of my life whether I like it or not. I have to adjust my lifestyle to the ever changing conditions as this degenerative disease runs its course. As if driving a car with no brakes, I cannot stop Parkinson's, but I can grab tightly the steering wheel and maintain to some degree control of my journey.

Reaching out - October 30th 2012

I received a number of e-mails and messages, commending me on writing so honestly and being open about medical issues some of which are quite personal. I believe that the Internet has given us all a remarkable chance to connect with others across the world, who have experienced, or are in the midst of similar circumstances. The internet is providing a means to a global support group and it is comforting to be in contact with those who can relate to what you are going through, the struggles we sometimes have to battle in life, whether they are health or other issues. To be in contact with people that may live half way across the world, who we would never have had the opportunity or pleasure to meet, suddenly appear in our lives; all be it through our computer screens. Modern technology has thrown this generation into a different world, and there are many pros and cons. But support for those in need, is definitely without doubt, now available, without ever having to leave the house. This is why I write with such stark honesty; I don't sugar coat anything and by truthfully revealing my thoughts and experiences, I hope to make a difference. Everyone has a story to tell, and no one gets through life without a few hiccups along the way. We all make mistakes and hopefully learn from our errors, but this is what makes us human. I was reminded by the author Jill Sadowsky, a brave and marvellous lady, who I am honored to call a friend, that laughter is the best medicine. I wish you all a good day and hope that you find something to laugh about today - for a good dose of laughter is by far the best remedy.

Secret handshake - October 31st 2012

Having Parkinson's is somewhat like belonging to a secret society. One member of this secret society can always spot another, without a single word being uttered. Is it the special "handshake" that we have? Or is it the famous shuffle and hunched over pose? The trouble is, this "society" that millions around the world belong to (unwillingly I might hasten to add) have a hard job keeping it secret, and if the truth be known, it shouldn't be a secret at all. Once diagnosis has been made, the quicker one tells family and friends the better. When those around you understand what's going on, life becomes a little less fraught. The clerk in the post office; staff at the supermarket, the man in the News Agent, everyone in the bank – the pharmacy, the Municipality; you name it, they all know I have Parkinson's. Being an author, writing a daily blog, public speaking, interviewed on radio and an amount of media exposure, all of which is about two diseases; I'm doing all I can in a poor state of health to keep up the momentum. I believe if you have something of importance to say, it's no good sitting quietly in the corner doing nothing. I want to get my message out there loud and clear, keeping Gaucher and Parkinson's in the forefront. The more noise we all make, the greater incentive there will be for scientists and doctors to find a cure. So if you are keeping your "handshake" secret, don't be ashamed; you are not alone, speak out and do something.

Parkinson's affect on our children - November 1st 2012

How does suffering from Parkinson's affect one's children? This is a question I have been asked many times. My personal situation is a little unusual, since I was born with Gaucher, a chronic disease; therefore my daughter has never seen me as a healthy person. She grew up not knowing anything else, so when I was diagnosed with Parkinson's at the age of 44, although certainly upsetting, she obviously took it differently from a child whose parent has always been healthy. However, when Parkinson's hits someone who has been healthy and led a normal life until diagnosis, the shock, realization and changes that have to be made in the family are a tremendous challenge and can be received with reluctance and conflict. For a child to understand that things are never going to quite the same at home again must without doubt be a scary and unsettling thought. Keeping children in the picture and up to date with what is happening is very important. Children are far smarter than we give them credit for, and retaining information from them is counterproductive. As much as a child may end up helping in the home, they should not be robbed of their 'childhood' and participation in extracurricular activities, should be encouraged. The additional worry that a child may encounter is "will I also get Parkinson's?" This is only natural and a very valid question. Unfortunately there is no clear answer to this question for now, but the likelihood is pretty low. There is so much research going on all around the world, it's only a matter of time before our questions are answered, and a cure is found.

Staying positive - November 2nd 2012

Negativity is contagious, and should be avoided like the plague. Being around anyone who brings you down, makes you feel bad and has nothing but negative things to say – this is a relationship that quite frankly you should steer away from. People who say terrible hurtful things and although you may be on the receiving end, those harsh words are not aimed at you, but are actually revealing that they have a problem with their own identity. Sometimes people simply don't have a 'filter' and are unable to think before damaging spirit crushing words come pouring forth. I have said it before, but can't stress it enough, that words have great power, and can have a good or bad affect. Staying positive, not only is highly important to my own state of mental health, but vital to my family and all those around me. Even if you are healthy it is just as important to stay cheerful; battling disability or suffering chronic disease, it becomes crucial to one's well-being. A well-known line from a film comes to mind: "If you can't say something nice, don't say anything at all". I'm going to leave you guessing from which film this comes as I was surprised to find its origin. But I think we can all agree that staying positive, cheerful and looking on the bright side is most definitely more rewarding and resulting in a better state of health both mentally and physically. Let me wish you all a wonderful weekend, and hope that you are spending it with those who lift up your spirits and bring joy into your life.

Hurricane Sandy - November 4th 2012

We all encounter 'off' days where we have a moan and feel a little sorry for ourselves, but things are put sharply into perspective, as we recently watched the terrible events on television unfold as Hurricane Sandy destroyed everything in its path, leaving devastation behind. My heart goes out to all the people affected by this natural disaster. I can't begin to imagine what it must be like to lose one's home, and all one's belongings. The rippling effects of the aftermath are so enormous, it makes one wonder how and when some semblance of normality will be reestablished. Man can plan and take precautions, but in the final event we are no match for Mother Nature's natural elements. With the winter weather arriving, the problems must be compounded, and merely keeping warm and dry becomes a pressing concern. Our prayers and thoughts are with all the people who have been affected, and may your lives be restored as quickly as possible.

Up-front - November 5th 2012

Sorry guys, but today's hot topic is bras! Front fastening bras to be precise – so you may want to skip this blog if you're male! I promise tomorrow's blog will be gender free! Having Parkinson's, dexterity in ones fingers is seriously compromised, not to mention a lack of range of motion in shoulders and arms – hence doing up a bra that fastens at the back requires some assistance. I cannot manage this seemingly simple act, and have to enlist the help of my husband or daughter. I need to be quick in the mornings, (which is easier said than done for anyone with PD) to catch one of my family before they disappear off to work, leaving me in my pajamas for the entire day, which is neither a nice feeling nor a pleasant sight. I was surprised and disappointed when going into some of the well-known major stores in London who have underwear departments with a large selection, including the helpful services of professional fitters; for there were no front fastening bras suitable for a Parkinson's patient. There were of course maternity bras – but I think I'm pretty well past the point of needing one of these. The only front fastening bras they could offer had from 6 to 8 tiny hooks down the front, which require great dexterity and made the bra into some huge cumbersome apparel. I have yet to find a front fastening bra that is simple and easy for someone with Parkinson's to manage alone. Maybe manufacturers should think of creating something to fill this need, for I'm sure there must be a market – I can't be the only one!!!

"How are you?" - November 6th 2012

In general people are kind and thoughtful, and when asking "how are you?" although I'm never entirely sure if they are just being polite and would prefer a simple "I'm fine thank you", or if they really want to know. What bothers me far more is that people don't think to ask my husband, who is my caregiver. There appears to be only one person who regularly asks my husband "and how are you?" and this is our wonderful neurologist, who I thank my lucky stars that I am under his expert care. Upon every visit, he always addresses my husband, and I think his empathy and consideration mean a great deal to us both. So much focus is generally on the patient, the caregiver is often left on the side lines, when in fact they are an integral part of the picture. Some caregivers, given half the chance, would love the opportunity to unload and talk about what they are going through. Others, might prefer just to talk about anything except the issue of caregiving, for they live it 24/7 and need a break from its suffocating effects. Each person is individual and deals with pressures and concerns in their own way. Offering to help is always greatly accepted, but only if it's in a real and constructive way. Simply saying to someone "give me a call if you need anything" is of no help whatsoever, as I can assure you, someone in need will never pick up the phone and ask for help. What is greatly appreciated is simple practical help. If for example you say "I'm going to the post office, do you need anything from there?" or "I'm going to the supermarket, do you need any groceries whilst I'm there?" This kind of immediate direct offer is the best kind of help you can give a caregiver. Just helping with a simple errand is much appreciated. So don't wait to be asked – jump in first and be proactive.

Disease orchestrated - November 7th 2012

Having two chronic diseases makes my life quite difficult (and that's a British understatement if ever there was one!) Trying to keep both disease under control, receiving the optimum medication and improving my quality of life is no mean feat. Our family doctor is the integral glue that like a conductor holds an orchestra together; she is the central pivot of doctors who take care of me specializing in their different fields. Like a driving force, with fresh eyes and new ideas, she has made quite a difference to the ensemble looking after me. One section of my personal orchestra specializes in Gaucher whilst the other sees to my Parkinson's needs. But one needs a skilled 'conductor' (family doctor) with soul, to hold it all together resulting in the best harmony. I think I can honestly say that I am feeling the best I have for a long time, and this is thanks to all the doctors and nurses working together in unison. It has taken quite some time with trial and error to get my Parkinson's medications just right, and now with the huge added bonus of being able to actually sleep at night, so no more mid night writing sessions at the kitchen table till the wee hours of the morning, I blissfully sleep a whole night. What a pleasure! I cannot tell you for I don't remember the last time I slept an entire night with no pain. It might literally be years! To sleep unhindered by pain, leaves me feeling refreshed and rejuvenated in the morning and much more able to cope with getting through the day. Not to mention that my husband is now not disturbed by my lack of sleep and the unpleasant feeling of seeing me in pain and unable to do anything to help. So he too has benefited and at long last can sleep undisturbed. I think if I had a theme tune it would have to be a song by The Corrs, entitled "At Your Side".

Book Review - November 8th 2012

My latest book "A Silver Lining" has been well received and the message of keeping cheerful, maintaining a positive attitude and making the most out of my life whilst battling chronic disease seems to be getting across. I am just an ordinary woman, who you would pass by in the street, not realising for one moment what my life is like. We've all at some point in our lives fallen in love, had children, lost loved ones, known grief, laughed and felt joy; for all these things are part of life. Although there is a serious undertone to my book, I have included many humorous true stories which I am sure most of you will be able to relate to, making this book light reading and hopefully bringing a smile to your face. A tale of two diseases; I refuse to give up by using a sense of humour to get through each day. Eternally optimistic I always manage to find a silver lining despite great adversity. I would like to thank Barbara Morrison who is a poet and writer, for writing a wonderful review of my book which you can read on her weekly blog site where she writes from a literary viewpoint. "A Silver Lining is available from Amazon or from Smashwords.

Sailing through life - November 9th 2012

I spent most of my youth every weekend and holiday by the seaside, sailing with my family. The menfolk smitten with the sea, sailing boats, entering races and joining a yacht club all became part of our regular activities. In Britain the winter is too cold to sail, so much of the equipment would be brought home and this was a season to repair any damages, replace parts that were worn and give everything a general overhaul. The sails would be hosed down meticulously, dried thoroughly before being stored away in their bags until the spring. Not having sailed for some years, I suddenly find myself again sailing, this time with my husband who seems to have caught the 'sailing bug'. Finding a hobby or activity for a caregiver; having something of their very own, enabling 'time out' and a little 'escapism' from the never ending tireless duty of taking care of a loved one is of great importance. So at least once a week my darling goes sailing, and on the odd occasion I join him. I have to admit, to get me on and off the boat is quite a performance and incredibly difficult. For safety reasons I have my own light weight PFD (personal flotation device) which is extremely comfortable to wear and gives us peace of mind. Parkinson's is not conducive to sailing as I have a lack of balance, feel seasick (which I never suffered in my youth) and unable to pull any ropes or participate in any way. I sit like a princess whilst my husband and anyone with an adventurous spirit who has joined us for the day do all the hard work. Although this activity is far from suitable for someone in my condition, it is important as a married couple to do something recreational together. For as many hours as we spend together at hospital visits; doctors' appointments, going to meetings where I've been invited to speak - this is not recreational and is a far cry from sailing. Whether you sail, play scrabble or cards with friends, go to nature reserves, visit stately homes, museums – going somewhere or having an activity that is not related to illness, is tremendously important to the welfare of one's marriage.

A snoring symphony - November 11th 2012

In the last few weeks, my medications have been altered somewhat, and thankfully am feeling much better than I have for some time. Parkinson's 'insomnia' an unwelcome tenant, has eventually been given an eviction notice, and hopefully has moved out for good. From the tormenting on-going bone pains of Gaucher plus muscular and rigidity pains of PD, sleeping pain free at night now, makes all the difference, giving me the energy to battle through each day. I can't remember the last time I had a full good night's sleep with no pain; I'm not talking of days or months, but literally years! With Parkinson's medications, it's all a matter of trial and error, but for now, the regimen I am on seems to be working well and I am the best I have been in a long time. Since I am sleeping better at night, obviously my husband also sleeps better, although he complains I snore!!! As if snore! OK I can hear your scepticism, and I can almost see you smiling for you are possibly also guilty as charged, so I'll come clean. Unfortunately if the truth be known, I do snore; my poor long suffering husband is sometimes treated to a wonderful symphony at night, and occasionally our large dog joins in and we have a duet! Is it any wonder my husband is so tired; he's up half the night listening to a private concert put on just in his honour! And if he's really unlucky, he gets an encore!

Someone is listening - November 12th 2012

Some wrote on Facebook yesterday how it's a daily struggle being in pain or feeling sick on the inside while you look fine on the outside. You may know someone who has an invisible illness (Parkinson's, Gaucher, Crohn's, Anxiety, Bipolar, Schizophrenia, Depression, Diabetes, Lupus, MSME, Arthritis, Cancer, heart disease, Epilepsy, Autism, Dyslexia, etc.) Being chronically ill, but appearing normal and healthy on the outside is a huge problem and can be very frustrating. I am writing this today to prove a point, that although you may sometimes feel alone, someone is always listening; there is support and help if you ask for it. People have preconceived ideas of what an ill or disabled person should look like or how they should behave. These preconceptions are often wrong. I am by nature a cheery person who smiles a lot, and this is not what people expect to see when hearing I suffer from Gaucher and Parkinson's disease. My cheerful exterior confuses those who do not understand chronic disease. Having a good support system is without doubt very important and the Internet has brought people together from across the globe with a common thread, that holds us together and gives us strength. With today's modern technology, Face Book, e-mail countless sites on the Internet, finding someone who can relate to what you are going through isn't hard to find. Realising you are not alone in your daily struggles makes each day a little easier to bear. I am here listening. If you want to write \- I will reply, if you have a question I will answer. You are not alone!

Parkinson's Parisian style - November 13th 2012

Parkinson's disease can affect anyone - irrespective if you're male or female, young or old, your origins and background; all of which bear no consequence to this villainous thief that waltzes in and takes over millions of lives around the world. Like a mad lottery run amock, some of us simply get a bad draw, and are diagnosed with Parkinson's. Reading an article recently about the legendary designer, Sonia Rykiel, who personifies Parisian chic style; she was instrumental in changing the world of fashion as we know it today. It's hard to imagine this vibrant power house of a talented energetic woman being diagnosed with Parkinson's at the age of 66. Yet she continues undeterred and like many of us; creativity remains high on her agenda. I was interested to learn that apart from her contribution to the world of fashion, she has written several books. If you have never been creative; diagnosed with Parkinson's wont magically bring out these qualities, but it makes me wonder what are the statistics of Parkinson's patients who were always creative prior to diagnosis. Whether it be writing, painting, sculpturing, wood work, acting or in Sonia's case helping shape the world of fashion - it's an interesting thought! As a fellow sufferer, Sonia shares something in common with me, for we both had a parent also with Parkinson's, and we both appear to have the 'happy gene', although I'm sure in France they call it 'joie de vivre' (joy of living). Never having been to Paris before, it is one of the things on my 'bucket list', and I hope very much that I manage to make it there one day.

A culinary challenge - November 14th 2012

I lost my sense of smell quite some time ago; often one of the first symptoms of Parkinson's, which frequently goes unnoticed, as it diminishes slowly over time and is of little annoyance or bother, until one day you suddenly realise it has entirely gone. Usually when someone remarks on a delicious smell emanating from the kitchen, or has noticed the dog is particularly smelly and badly in need of a bath, you are abruptly made aware that you can no longer smell a thing, and have lost one of your primary senses. My sense of taste has recently also become less sensitive, and I find I am more inclined to eat strong flavoured foods, spicy dishes in particular. Trying to maintain a balanced healthy diet when one is no longer enticed by appetizing smells, or delicately seasoned foods is a problem. I have found that often my appetite wanes when nothing is appealing to me, and it is worryingly easy to skip meals. I therefore have to consciously make the effort to eat something, however little. Now you would have thought there would be an up side of this, that those extra pounds that insist on hanging around, would get the hint and start to disappear. Unfortunately due to lack of mobility I am unable to do much physical activity, so shedding an unwanted kilo or two is far harder said than done. Cooking for the family, taking other's likes and dislikes into consideration, and striking a good balanced diet for myself, when I'm not inspired to eat, is quite a culinary challenge.

No patience - November 15th 2012

Talking with a dear friend, agreeing we have little or no patience for people who make a mountain out of a mole hill; having both experienced ill health to its nth degree. My friend in the role of caregiver, and myself in the role as patient, leaves us with no tolerance for theatrics and hoo-hah that some people feel it necessary to exhibit. I have been in and out of hospital more times than I dare to count; experienced more than my fair share of surgery, probably had every test you can possibly imagine and sometimes feel like a human pin cushion! I remember some years ago, having my blood taken at a medical center, sitting there quietly and patiently, I suddenly heard a woman shrieking and several members of staff running around a lady, who looked like she was about to topple off the chair she was sitting on. It took a few nurses to lift the lady and lay her onto a nearby bed. Her husband took hold of her hand in a gentle manner, whilst he calmly spoke in a soothing way to her. The women had her hand clasped over her eyes which were tightly shut indicating she was in severe pain. As she continued to scream, I began to feel compassion for this lady who was clearly very distressed and in agony. I then noticed the nurses standing around her and from the expression on their faces could deduce that they had no empathy and were in fact looking cross and rather irritated as they briskly walked away. It transpired that this award winning performance she had put on for us all, was merely from having a simple blood test; a thin needle being inserted into her arm! I couldn't believe my eyes, and have never seen such an act before. Thankfully she did not honour us with a repeat performance, for there was no standing ovation, and like a show that obtained a bad review, it was a complete flop; her antics were unwelcome and poorly received.

The Huffington Post - November 16th 2012

Trying to get my message out, has been jolly hard work considering my poor state of health. Yet it is this very state that drives me forward, determined not to give in, I battle two chronic diseases with a fighting spirit and a positive attitude. I have spent many hours writing, blogging each day, answering numerous e-mails I receive from around the world, and taking on occasional public speaking engagements. When one is talking about chronic disease, it is a topic that is far from sensational or sizzling; therefore it is understandably harder to get people interested or to listen. Most have not heard of Gaucher disease, justifiably so, as it is a rare disease with only approximately 10,000 patients worldwide. I am also trying to reach fellow sufferers / care givers, and to make the general public more aware. Everyone has heard of Parkinson's, yet it's surprising how many assume it is a disease affecting only the elderly, when in fact the number of young onset Parkinson's patients is increasing. Generally people associate Parkinson's with simply shaking, and are not aware of the many unpleasant symptoms that patients suffer from with this degenerative disease. I was therefore thrilled and delighted to be asked by The Huffington Post, to write a weekly blog for their Lifestyle Section and are grateful for this opportunity. With a worldwide circulation, I hope to further my campaign of reaching others in similar circumstances, offering support and bringing greater awareness to issues that are close to my heart.

Deep brain stimulation - November 18th 2012

Apart from the many medications that are on offer today, there is an option that for some who have become medication intolerant, is the only choice left. DBS - deep brain stimulation is a fairly invasive operation where a lead, made up of four insulated wires are implanted in the brain. This lead passes under the skin from the head down the neck to a small electrical device, much like a pacemaker which is the power source that when turned on, delivers an electrical pulse stimulating a particular area of the brain. Here is a link - I warn you, this is not for the faint of heart. It is extremely graphic and even I, who thought was made of cast iron when it comes to medical issues, found it quite difficult to watch. Knowing several people who have undergone this procedure, I take my hats off to you. I think it takes a great deal of courage to undergo such an invasive operation. Whilst the medications I am on continue to work well, having a DBS is not on my agenda for now. I have met some people who have had this procedure and it has only partially helped with their quality of life, whilst others have benefited very much.Some fellow sufferers in Australia have recently undergone DBS and it has been successful. I believe someone is about to undergo this operation in the next day or two. I wish you good luck and a speedy recovery. My prayers and thoughts are with you.

My anchor - November 19th 2012

Stability in life is something most of us need, whether it be in a relationship, one's career/job or financial security. Feeling safe and being in control is a good feeling, but when Parkinson's or any degenerative disease decides to take up residence, life is never quite the same again. Control over even simple daily events become more challenging and feeling the loss of ability to be self sufficient and independent loom frighteningly near. People are generally at a loss when to offer help and when to step back and let me get on with things, and I appreciate that its hard to know what to do. I understand they do not want to seem unhelpful, but also don't want to make a big fuss when there is no need. I often see on people's faces the indecisive look of "should I offer t to help, or let her get on with it?" and realise this is a difficult position to be in. The one stable thing in my life that I can count on is my husband. His face is the last vision I have before going to sleep, and is the first sight I am greeted with in the morning. I am blessed to have a steadfast husband, who is my rock, and always there for me. Like an anchor, he provides the stability that keeps me on an even keel, as we journey the years together, navigating through life's turbulent waters. Parkinson's is changeable like the weather, and one never knows in advance if it's going to be a good day or a bad one. Making plans in advance, is always tricky, but the best advice I can give; is to simply take one day at a time.

Cheese cake will do it! - November 20th 2012

I was hospitalized many years ago and upon being admitted, my blood pressure, blood tests and weight details were all noted. I was having a Gaucher bone crises, the severity of which necessitated hospitalisation as intravenous morphine was administered for the chronic pain. At night somehow, the pain seemed worse, and unable to sleep I wandered aimlessly up and down the corridor. A sympathetic nurse taking pity on me, knowing I couldn't receive a further dose of morphine for another hour, asked if I'd like a cup of tea. When in chronic pain, an hour can feel like an eternity. Desperate for anything to take my mind off the agonizing pain, I settled for the tea. A cup of tea, as you've probably gathered, how every kindly meant, doesn't really help at all. However, it made the nurse feel better, and she then had a further bright idea and offered me a piece of cheesecake from the fridge in the nurses' station. Now cheesecake is an entirely different matter, and although it does not possess any pain killing qualities; what it lacks in pain relief, it makes up for as a tasty distraction. Having enjoyed the tea and cake, I made my way back to bed. Shortly afterwards enough time had elapsed; I was able to receive the next dose of morphine, and so the night passed. The following night, I found myself in the hallway once more and the same nurse beckoned me to the nurses station where I was treated again to tea and cheesecake. This became a nightly ritual, no matter which nurse was on duty, my midnight snack had become routine. After about a week I was discharged from hospital but before leaving, they went over some tests, one of which was my weight. I had mysteriously gained weight during my hospital stay. The nurse checking again, said there had to be an error, and whoever had written my weight upon arrival must have made a mistake. I sheepishly owned up to my midnight tea and cake, to which she smiled and said "you must be the first patient I've come across who has put on weight in hospital!" I told her that cheese cake will do it!

Lost and found department - November 21st 2012

Being housebound most of the time; when the opportunity arises to get out, I jump at it. Like an enthusiastic teenager (in my mind I hasten to add) who's been offered reprieve from doing homework; with great eagerness, I put on my shoes, as quickly as a Parkinson's patient can be expected, and I'm ready to leave the confines of the house. This morning, I accompanied my husband who had a meeting near the sea front. So here I sit writing to you all, looking out of the windows of a café on the beach. It's early morning, the sun is shining despite a fresh wind and a slight nip in the air, as I watch people take their daily constitutional along the promenade, walking their dogs or those with purpose in their step smartly dressed are off to work. The waitress brings my coffee and watching the sea, the waves and white surf crashing repeatedly on the shore, escaping the worries and chaos of life for a short while, I feel at peace and relaxed. Out of the house, seeing a different view, makes a very pleasant change and important for any disabled person. I see a young couple holding hands as they stroll along the beach and my mind goes back to the days when my husband and I would walk hand in hand. I loved to walk, whether it be the beach or the forest. Walking and exploring is something that Parkinson's has taken from me; a pleasure I've lost, and would dearly like returned. Maybe I should try the 'lost and found' department and see if anyone has handed in my 'lost ability to walk'. Sometimes it's the simple pleasures, that when lost, leave the largest impact.

New Blog on The Huffington Post - November 22nd 2012

Today I posted a new blog entry on The Huffington Post - Lifestyle Section, entitled "Parkinson's gift of insomnia". Writing from personal experience, I don't sugar coat anything - I tell it as it is with a touch of British humour. I am thrilled at the opportunity of writing on a weekly basis for The Huffington Post enabling me to get my message out to a wide audience. Founded in 2005, New York USA, and founded by Arianna Huffington, Kenneth Lerer, Andrew Breitbart and Jonah Peretti, the site offers news, blogs and original content and covers a wide array of interesting topics. In 2012, The Huffington Post became the first commercially run, United States digital media enterprise to win a Pulitzer Prize. The Huffington Post is ranked the most powerful blog in the world by The Observer and Arianna Huffington was named in 2009 as number 12 in Forbes' first ever list of the Most Influential Women in Media. The same year she was ranked as number 42 in The Guardian's Top 100 in the Media List. On July 6th 2011, The Huffington Post UK edition was launched, and now appears in various languages around the world. I hope you will take time to have a look at my blog, and please feel free to leave a comment. Feedback is always welcome.

Parkinson's does not define you - November 23rd 2012

At a Parkinson's event some time ago, I found people coming up to me saying they'd got Parkinson's, or caregivers would tell me their wife, husband or parent had Parkinson's. As I listened, I became acutely aware that nobody was thinking of introducing themselves by their name, but instead referring to Parkinson's first. It's often not what you say, but the way you say it. When introducing myself, I say "hello, my name is Elaine Benton, and I'm an author." I then may go on to speak about Parkinson's if it's relevant to the situation. The difference to me is monumental, as I see the person first, and not the disease. If you are an individual who happens to have Parkinson's, make sure you use YOUR name and don't give Parkinson's the honour of being introduced first!!! You'd be surprised at how many people forget to say their name, or what they do, where they come from, all of which seem incidental to them, as they launch into "I've got Parkinson's". There is no doubt that as a fellow sufferer, I whole heartedly agree and admit this lousy disease rules much of our lives, and it won't go away. It irritatingly makes itself present in a pesky way, much like a three year old child who has had too many sweets and hyped up on sugar just wont sit still or go to bed. Don't give Parkinson's the satisfaction of being more important than you. You are a unique, special person, and I'm sure have interesting and wonderful things to say. So put Parkinson's on the back seat and take a ride in the front for a change. It may sound like a small difference, but the view is so much better!

I have a name - November 25th 2012

Thank you 'anonymous' who left me a comment on Friday's blog regarding "Parkinson's does not define you". It was sadly a well-founded comment, and who ever you are, have clearly spent much time, like myself in hospital. The comment (for those of you who may not have seen it) was: "In hospital so many times Doctors on there rounds would say on arriving at my bed this is Parkinson's. Naturally this is not my name but as you say people are sometimes called by their illness and not their name. Not good."

Despite the marvellous care I receive, and I am fortunate to be under one of the best hospitals, which deservedly holds a fine reputation, I have to agree with anonymous' comment. The 'old school' of the doctor or surgeon making his rounds followed by his entourage is standard procedure in most hospitals. Standing at the foot of your bed, with all eyes upon you, not bothering to say good morning, or using your name, is insulting and lacks compassion, referring to you in the third party, talking about you as if you are merely 'a disease' and not a person at all. Then after discussing your case, the group leave, not waiting a second, should you want to ask a simple question, they hurry on to the next patient without pause or consideration for the patient. I am sorry to say that this practice still exists today, having personally experienced it a number of times, and although I have become accustomed to this archaic practice; fully realising that time is of the essence and 'the doctor's rounds' are not a social call, there is a need for change in attitude. I hope if you are a doctor reading this, you will please take note, as from a patient's viewpoint, this behaviour not only lacks empathy and is upsetting, but quite frankly makes you appear in a bad light. Please address a patient with courtesy, a smile, and most of all, don't call me "Gaucher with Parkinson's".....I have a name, and it's Elaine Benton!

Feeling the odd one out - November 26th 2012

Sitting at a friend's house having a get-together, I was looking forward to the prospect of stimulating good conversation, catching up on everyone's news; to laugh and generally have a break from the every day worries and concerns that engulf us all. As I sat there, expectantly waiting for someone to start talking, I realised I was the odd one out. For a change, I wasn't the odd one out for having two chronic diseases, but felt singled out for a very different reason. Each person was absorbed in either texting someone in great urgency, reading an e-mail that had just arrived necessitating immediate attention, apologetically making a phone call that could not be left till later, or typing a date into their diary of extreme importance. They were all so engrossed in their smart phones, that they appeared to have forgotten the purpose of us getting together. Eventually I opened my mouth, not able to contain myself any longer, and asked if anyone would like to actually talk. Their astonished faces were a picture as they suddenly all looked at me whilst still clutching their precious smart phones that they could not possibly function without, and I began to wonder where present technology has lead us. The possibilities and functions that these smart phones can perform are truly amazing, and without doubt a huge help in our busy lives, where time is precious and there never seem to be enough hours in the day. However, I don't think that our lives should revolve around a piece of technology (however great it is) or that the world will fall apart if whilst in company for an hour or two, you leave your smart phone in your bag. I may be old fashioned, but I call it common courtesy, when in company it would be a smart move to leave your phone alone and take time to enjoy communicating with those around you.

Becoming a burden - November 27th 2012

My mother's biggest fear was becoming a burden to her family in her old age. When I was diagnosed with Parkinson's five years ago, I began to understand her almost obsessive fear, as I too worry about the future and becoming a burden to my darling husband. A book entitled "...and death came third!" written by Andy Lopata, states that in 1984 a New York Times survey was held on social anxiety. Odd as it may sound, the number one fear people had was walking into a room full of strangers, followed by speaking in public. What is amazing, is that "death" came in third place! Hard to believe, but you can't argue with statistics. I guess my priorities have changed very much over the years. Walking into a room full of strangers doesn't phase me, and public speaking is most definitely not a problem for me. Even the survey's third most common fear; death, has never worried me at all. I think my number one fear would have to be the same as my mother's, for being a burden on one's family is infinitely more distressing than anything else I can think of. I hope a cure is on its way and that I can enjoy my life with my husband and grow old together. I want to be one of those couples you see with silver grey hair, wrinkles and lots of laugh lines, still in love and holding hands as they sit on a park bench. It's not much to ask for, and it may sound a small dream to you, but it's the dream closest to my heart.

Frequent hospitalisation - November 28th 2012

Having been hospitalized many a time, I absurdly refer to the hospital as my "second home"! Over the years I have come to know most of the doctors, nurses and staff in different departments. I would have thought by now, they'd offer me a deal; two visits for the price of one, or maybe a "frequent visit card"! With Parkinson's, I always have to ensure I've enough pills with me to cover my hospital stay, and I am held solely responsible for taking them. I always take with a list of my PD medications, dosages and times of day, so that the staff are aware of what I am taking, in addition to any medications that I'm allergic to, which I clearly mark in bright red. I had hip surgery a few years ago, and am so familiar with pre-operation procedures, I took it all in my stride. However, I did have to laugh when the surgeon drew a large arrow with a black marker on my leg indicating which one was to be operated, ensuring no mistakes once l lay unconscious on the operating table. The wrist band with my name on it, was reassuringly checked several times before I was finally wheeled into the operating room, where it is always so cold, I felt as if I had arrived at the North Pole. But alas no reindeer, cookies or hot chocolate, just a warm blanket that was placed over me until the anaesthesiologist asked me to count back from ten, "10, 9, 8" is probably as far as I've ever managed to get before blissfully falling under his spell (or rather from the anaesthetic that's entered my veins). As long as I'm out for the count, and I can't see or hear anything, I'm just fine, and when I eventually open my eyes, I find I've magically returned from the North Pole and thankfully find myself in the warmer climate of the recovery ward. Even though the operation may have been a total success, it is ultimately up to the patient to make a full recovery, ensuring to follow any instructions, and physiotherapy being of great importance should be taken very seriously.

Today my third blog for 'The Huffington Post' appears on line about 'Inspiration'.

Why the sexy robes? - November 29th 2012

I received several e-mails asking the same question, and hope you don't mind that I answer you all in my blog today. I began to wonder how many others don't understand the reason for the "sexy robes" one often has to wear in hospital, if having an operation and during post surgery. I am sure you realise I am referring to the embarrassingly open down the back robes; exposing one's backside if you're not careful, with one tiny pathetic ribbon tied at the back of the neck! These are about as sexy as thermal underwear. As if this isn't bad enough, to top off the incredible ensemble, a disposable shower cap of sorts is added to cover one's hair. A more attractive look I cannot think of! Who needs a cold shower, when all you have to do is pop on one of these fabulous hospital robes adorned with disposable shower cap - and I can assure you any amorous thoughts are promptly dispelled. However, I digress, and now will answer your question as to "why" hospitals around the world insist on banding together, all using similar garments which wouldn't be found anywhere near a couture fashion house. The reason is very simple: when going into surgery, as soon as someone is unconscious on the operating table, like a dead weight, it is extremely difficult to physically remove pyjamas or even a regular night gown, not to mention wasting precious theatre time. By using these robes with a single tie at the neck, it takes but a second to undo, easily removing the robe, allowing the surgeon and team to get on with their job. Likewise, once the operation is complete, again it is far quicker and simple to put this unappealing robe back on the patient. If a patient is hooked up to an infusion or other paraphernalia, ordinary bed ware would get in the way, hindering the nurses in doing their job post surgery. So now you know there is indeed a legitimate and very good reason for this most unattractive attire. There is a lovely scene in the romantic comedy film "Something's Gotta Give", where Jack Nicholson bares it all from behind in one these famous hospital robes.

Parkinson's doesn't discriminate - November 30th 2012

Parkinson's doesn't' discriminate; it's not perturbed if you're young or old, rich or poor, what religion and background, or the colour of your skin. Parkinson's isn't bothered who you are, and like a school class bully, with no rhyme or reason, randomly decides who to victimize. To be diagnosed with Parkinson's is life shattering news, but early detection can make a big difference, especially regarding medications that work best when administered in the early stages, enabling optimal effect. Appropriate physical activity, should immediately become a part of one's daily routine, ensuring that mobility, range of motion, muscles and bones along with a healthy diet; all of which will give your body the best possible scenario to fight this disease that uninvited, crept into your life, hoping to cause chaos. Don't let it! Do all you can to keep this bully in the principal's office.

There appears to be a fairly new diagnostic imaging technique, and although still in it's early stages, this is exciting news. Hopefully in the near future, the system will enable accurate early diagnosis, instead of patients having to wait until the disease begins to manifest itself sufficiently, enabling a neurologist to ascertain a correct diagnosis. Early detection is the key. I was fortunate to be diagnosed very quickly, just three months from when the first tremors started in my leg. As I have explained before, my particular case is a little unusual, as my father and one brother, having Gaucher disease also had Parkinson's, clearly a hereditary connection in our family, making my diagnosis obviously that much faster. The imaging test which is still in its infancy, but sounds like it has much potential if used alongside clinical exams and family medical history, might be able to differentiate between the various PD syndromes. If you are interested take a look at the Science Daily.

Skilled companion/assistance dogs - December 2nd 2012

Companion / assistance dogs, are specially trained to help people with limited physical mobility. These amazing dogs are taught to retrieve objects, pull a wheelchair, fortifying support and balance whilst going up and down steps or merely walking. Companion / assistance dogs are also taught to dial the emergency services (in the States this is 911) if their owner is in crisis and needs help. Apart from a dog providing unconditional love and companionship to those who are housebound, studies have proven that a dog has a great calming effect and can be highly beneficial to a disabled or ill person. To purchase a young dog who has been trained for specific duties is highly expensive, but there are alternatives, and trainers can work with the individuals in their own home, teaching the dog commands that match one's needs. Not all dog breeds are suitable, and even within certain appropriate breeds, a dog still may not meet the requirements for a successful companion / assistance dog. A great deal of time and energy has to be invested in training a dog correctly yourself with the help of a professional at home. This is not a quick process and can take up to a year, requiring perseverance and dedication, which generate a strong bond between dog and owner, but will give immeasurable results. I read that some dogs are so highly trained, they can even assist getting dressed and undressed (this I had to see to believe!), if you want to be amazed, take a look at this link.

Parkinson's in space - December 3rd 2012

I've met many Parkinson's patients who have been able to continue working, and although they may have to make some allowances along the way, possibly adjusting the work day to slightly shorter hours, they manage to hold down a job. Being able to continue with one's career if possible, is obviously the best scenario. Apart from keeping physically mobile, the mental stimulation and feeling that each morning you have a place to be, is of immense importance. One of the biggest problems, when ill health takes away one's career; is the feeling of being unable to contribute to the family's financial welfare, and the loss of self worth and ability to be independent with dignity. When I heard the story of a remarkable man with Parkinson's, who continued working as long as he could, I had to share his inspiring story with you.

American hero Rich Clifford, was accepted and trained by NASA as a shuttle astronaut who successfully completed three flights. Fifteen years ago Rich Clifford realised something was wrong, and that his arm was not swinging as it should when he walked. After neurological tests, he was diagnosed with Parkinson's, but nothing was going to stop him! This is one man who definitely wanted to continue his work, and refused to let Parkinson's take away his dreams and all that he had worked and trained so hard for. Rich Clifford was launched into space with a secret; a diagnosis of Parkinson's. After the March 1996 shuttle mission, Rich Clifford decided he shouldn't fly again and last May underwent a DBS procedure (deep brain stimulation). Take a look at this amazing link and see for yourself the only Parkinson's patient who made it into space!

Good days - bad days - December - 4th 2012

I never know in advance when I'm going to have a good or bad day, and making arrangements in advance can sometimes be risky, uncertain what state I will be in, on that particular day. My husband knows me better than anyone, and just one look at me, or the sound of my voice and he can tell. When I'm having a good day, it's great, and although my walking is still poor and dexterity in my fingers terrible, I put up with the many symptoms and take advantage of these times, achieving as much as I can. To have a productive day, go out somewhere or have visitors over, is great when I'm feeling good. On a bad day, it's an entirely different story and you probably wouldn't want to be around me; I don't think I would want to be around me! A bad day is when my voice can hardly be heard and its an effort even to talk on the phone, the shaking and tremors are exacerbated, walking from one room to another becomes a challenge, I can barely think or make decisions - it's all just too much, a feeling that I've simply had enough and can't take any more; asking myself, if this is what life has to offer - what's the point? No matter how cheerful and positive I keep, and I am fairly upbeat most of the time, on occasion, and thank goodness it's not very often, my spirits sink, and Parkinson's unfortunately has the upper-hand. In these times I don't think anyone except another Parkinson's patient can fully understand or appreciate how awful I feel. I just want to curl up in bed, pull the covers over my head and hope to be granted grace and magically disappear from this world. A more honest description of a bad day, I cannot manage. Data from the largest on-going study of Parkinson's disease reveals depression has the largest impact on the health status of patients. An article appears on the National Parkinson's Site which you may find interesting to read.

A new day - December - 5th 2012

Thank you for the many supportive e-mails yesterday which were very much appreciated. If you are a regular reader of my blog, you will by now realise that I write honestly, the good and the bad. There would be little point in me cheerfully writing only good things, when so many of you out there, who are fellow sufferers or caregivers know for a fact that no matter how positive an attitude one has, there are naturally going to be down moments. After a good night's sleep, I have awoken to a 'good day'. Any Parkinson's patient will be able to relate to having 'good' and 'bad' days. Then there are 'on' and 'off' times when the medications are working and then suddenly cease to work. On a 'bad day' it takes every ounce of energy to even speak to someone. Yet on a 'good day', you'll have trouble getting a word in edgeways, and my husband and those who know me will agree, it's sometimes difficult to get me to shut up! It's hard to change the habits of a lifetime, and even as a young school child, I remember the teacher rapping my knuckles with a wooden ruler for talking in class. Long gone are those days, for today if a teacher were to reprimand a child in such a physical way, they would probably be charged with 'abuse'. Having Gaucher disease, one bruises very easily, so you can imagine how this chatter box, as a child, was always covered in bruises, and yet it never occurred to the teachers or anyone that maybe using a wooden ruler to reprimand me might not be such a good idea! So little was known back then about Gaucher, it's a wonder I survived childhood at all. On one occasion, late at night, feeling extremely unwell, my mother called the doctor to the house. The doctor was quite irritated at making a house call so late, but as soon as he walked into our house, the unmistakable metallic smell of blood that emanated from my bedroom, made him change his mood immediately. I was about ten years old and hemorrhaging internally (due to the Gaucher); he apologized to my mother for being so off-hand on the phone, and called for an ambulance straightaway. Strapped down on the stretcher in the ambulance, lights flashing and sirens blaring, we made our way to Great Ormond Street Hospital in the center of London. I was so exhausted by then, that I fell asleep. Laying motionless and having an extremely pale complexion, when the poor young medic in the ambulance glanced at me, he thought I had died. I am clearly one determined stubborn patient - for I'm nonetheless here, and have no intention of going anywhere for quite some time and still have much to do. Take a look at my latest article on The Huffington Post entitled 'Inspiration'.

Book Reading - December - 6th 2012

At a nearby retirement home, I have been going once a week to read to the residents there. Many of these marvellous people are well into their 90's and do not own e-book readers; some have extremely poor eyesight, and cannot manage to read at all. I decided to take along my e-book and read to any of the residents who would like to listen to my latest book "A Silver Lining". I make sure to arrive mid morning, so that not only am I fresh and awake, but this is when my voice is at its best and I'm able to read out loud. I have to keep sipping water as my throat gets dry but I manage OK. I obviously couldn't read the entire book in one sitting, so will return again next week, and pick up where we left off. I could tell my story was being enjoyed, for every so often I could hear laughter, or an "ah" and see smiling eyes. Visiting people in retirement homes has become something important to me, as I can see that some are visited by family and friends only at the weekends, and unfortunately some don't have visitors at all. It can make such a difference to an elderly person's day to receive a visit from someone. My mother was fortunate enough to have been taken care of very well at this retirement home, till she passed away in March 2012. I used to visit her frequently, and over a period of time, I found I was collecting other ladies with whom I would visit. Although my mother is no longer with us, I continue to visit people there, as I know a visitor with fresh conversation is always welcomed. My book is available through Amazon or Smashwords, and you can read a small portion on line. All stories have a beginning, middle and end, and the beginning of my story is not humorous, so please don't be put off, thinking it is a depressing heavy book, for it most definitely is not. I felt the beginning had to set the scene explaining how I came to have such a positive and cheerful attitude that seems to baffle doctors. The remainder of the book, be rest assured, will have you laughing as I recount many funny anecdotes, events that you'll be able to relate to, and incidents that have probably happened to us all as we go through life.

50 shades of Parkinson's - December - 7th 2012

If one could possibly colour code all the symptoms and side effects of Parkinson's, I think there would probably be more than fifty shades! The symptoms are so many; vary to such a degree, each patient different, the variables are too diverse. Most diseases have a set of common symptoms that a patient would normally experience, but not in the case of Parkinson's. Having met and spoken with many fellow sufferers, each one has a different story to tell, no two are alike, and this is probably what makes getting the right balance of medications so difficult. What works for one person, doesn't necessarily work for another. I got a call the other day from a salesperson, which sounded like a pyramid scheme of selling a 'wonder pill'. At the beginning of the conversation he thought he'd found a gullible new sales person who would travel the country selling and endorsing their pills, which of course cure everything from skin disorders to serious diseases, naturally including Parkinson's - hence the 'grey area' in this conversation began! Highly suspicious of any pill that miraculously cures everything under the sun; I'm sure the Health Care System or any doctor in his right mind wouldn't take a second look at this pill. Once I had made the salesman understand that I am disabled and suffer two major diseases, and not able to, let alone interested in becoming part of his sales force, he continued his barrage of statistics and information about his wonder product, hoping to at least make a sale. I stuck firmly to my ground, and after his unsuccessful attempt, he asked if his boss could talk to me! Ah so now I had the attention of the higher powers of this pyramid. We ended up having a conference call, and after giving this highly persuasive professional salesman a mini lecture about Gaucher and Parkinson's disease, he realised that despite his determination (who should get 10 out of 10 for effort), he was not going to make a sale. I hope both these men now understand and learnt something about Gaucher and Parkinson's. To sell these pills to unsuspecting customers who may be very ill indeed, not to mention the expense, which a chronically ill person, who is more than likely not working, may have a very limited income; is in fact unethical and immoral. The many shades of Parkinson's is very complex, so don't let any salesman, however persuasive, charm you into purchasing something your doctor would not recommend.

I don't snore! - December 9th 2012

Mortified, I've been told that I snore,

I refuse to believe, fabrication for sure.

Such a ghastly noise, not me, it's the dog!

Snores like a diesel train, sleeps like a log.

Sounds travel at night, do strange things,

Maybe it's the neighbour, who nightly 'sings'.

If you happen to hear, an odd symphony,

In the middle of the night, it is not me!

I just breathe heavily, I insist, that's all,

When awfully tired, fast asleep I fall.

How dare anyone intimate or imply,

That I should snore, it's simply a lie!

How extremely un-lady like, it would be,

Adamant, I won't own up that it's really me.

OK, I cannot continue this ruse,

The truth is out, guilty as accused.

I'm the one, who makes the walls quake,

A one person orchestra, music I make.

I disturb my husband, keep him awake,

He nudges, pushes and gives me a shake.

Continue to snore, I belt out that sound,

Rattles the doors, and vibrates the ground.

I confess, to nightly "music", a secret no more.

Please, keep it to yourself, now you know that I snore!

by Elaine Benton - 2012 ©

Parkinson's & mental health - December 10th 2012

My last article that appeared in The Huffington Post was entitled "The many elements of chronic disease" and I wrote about the mental health issues that unfortunately often accompany Parkinson's disease. I find it sad and hard to understand that in today's society when many topics are spoken of so openly, that this one issue remains steeped in stigma and people are not forthcoming about a very normal and huge part of most chronic illnesses. The very nature of Parkinson's, not to mention the countless medications that have some nasty strong side effects, without doubt cause mental health issues to arise. Sweeping them under the carpet may have been considered acceptable fifty years ago, but we are now in the year 2012, so let's give ourselves a little more credit; things should have improved and changed, we must be able to talk freely, without shame or embarrassment about mental health. Anyone who knows about Parkinson's realises early on, that depression plays a major role in this degenerative disease and cannot be left to merely sort itself out. Hallucinations are also common with more advanced cases, which can be highly alarming to the sufferer and to those around. The more knowledge and educated we become, the better we can tackle these unpleasant symptoms as and when they arise. Enough sweeping under the carpet - let's come clean - have a spring clean (although it's mid winter - it must be spring somewhere in the world!) and get these issues out in the open and taken care of.

Disabled friendly home - December 11th 2012

We have been waiting a very long time to move into our new home, which has been made especially with my disability in mind. All doorways and corridors are wide enough to take a wheelchair, and the light switches low enough for me to reach should I at some point in the future be wheelchair bound. Trying to think of everything to make life as easy as possible in my situation whilst making a home with relatively low maintenance and thinking 'green' takes a great deal of thought and research. My husband must have a diploma by now in disabled friendly appliances, home requirements and restrictions and regulations. Stress being the number one antagonist for Parkinson's, thanks to my very thoughtful caring husband, I have been kept away from the many anxieties and worries involved with building a house. I have merely had the pleasure of choosing the colour of floor tiles, the colour of the paint for the inside and outside walls and other accessories. I must admit I felt like an idiot when the salesman told us to try out the toilets. My husband looked at me as if I was mad. "You can stand and talk in front of a few hundred people and talk about Gaucher and Parkinson with no hesitation, and you won't sit on a toilet in a shop?" he said, laughing at me. Seeing he had a point, I reluctantly sat on a toilet in the showroom, my face turning beetroot red; embarrassed beyond belief, as other customers milled around looking at the various bathroom fixtures on show. However, once seated I could feel there was a great difference between the heights of various toilets. Clearly choosing the right height toilet when disabled, is of great importance, so shedding my prudish behaviour, I brazenly went ahead and sat on several more until finding the most comfortable one. We then chose sturdy stainless steel bars which will be affixed to the wall next to the toilet and in the shower. What our bathroom will lack in style and chic design, will more than make up for in safety, low maintenance and comfort especially designed for yours truly.

Nomination - December 12th 2012

I have been writing and campaigning long and hard about Gaucher and Parkinson's disease for a few years now, so I was thrilled to learn I have been nominated for The 2012 WEGO Health Activist Awards: "Best in Show Awards" (Blog, Community, Facebook, Twitter) Awarded to someone who exemplifies the use of one particular social platform to raise awareness and make connections. Nominate your favourite blogger, community leader, face booker, tweeter, or blogger.

"Health Activists inspire us every day with their commitment to on-line health communities. Let's celebrate their accomplishments and recognize their contributions. The Health Activist Awards honour the leaders who made a real difference in how we think about healthcare and living well in 2012. Check out the awards below and start nominating your favourite Health Activists for their best work in 2012. For more information, check out our complete contest rules and nominate someone."

Aware in Care Kit - December 13th 2012

In the USA The National Parkinson Foundation have created an 'Aware in Care Kit' which is available for free to residents of the USA. Having not heard about this kit, a very kind lady sent one to me and I have since been encouraging people to use this very well thought out aid and adopt a similiar system in other countries. When a Parkinson's patient is hospitalized, for what ever reason, it is important that medications are given according to the patient's schedule. It would surprise you at how little the staff in a general ward know about Parkinson's. When admitted to the orthopedic ward for example, it is highly unlikely that anyone there would realise the importance of when Parkinson's medications should be taken, and that any deviation from one's schedule can have some appalling effects. By using this kit, not only are you ensuring your best welfare during a hospital stay, but educating the staff and possibly helping other fellow sufferers in future when hospitalised. Here is a link to a short video about this kit. However good the hospital you attend, one should always be aware of what medications are being administered, and possibly one's caregiver may need to take over this role if you are not well enough. There are many drugs administered in hospital that can have an adverse effect with Parkinson's medications, so don't be afraid to question any medication that you may have not heard of. Better to be on the cautious side, and not have the misfortune of having to deal with adverse effects.

Chicken soup - December 14th 2012

Coming down with a nasty cold and being generous of heart I have passed it on to my husband. I'm always willing to share, but I think he could have done with this! There is one food that immediately comes to mind, and that's chicken soup, which our grandmas and mothers always swore by. I don't know why, but a bowl of piping hot freshly made chicken soup with thin noodles does wonders; warming the cockles of your heart - comfort food I guess some would say. But scientists have come up with some interesting facts that several ingredients contain anti inflammatory properties which would explain why it soothes colds, soar throats or flu symptoms. I have also found that a drink of hot water mixed with a teaspoon of honey, a little lemon juice, and several small pieces of fresh ginger cut up, is an excellent (not to mention tasty) soothing drink. The ginger having supposedly anti-bacterial properties, helps coughs and soar throats. Taking so much medication when suffering chronic disease, when it comes to a simple cough or cold, I'd much rather use something from our pantry instead of the pharmacy! But getting back to chicken soup ... there is in fact a book called "Chicken Soup for the Soul" which has many short inspirational stories about changing your life through positive thinking, solving problems and overcoming challenges that life throws our way. I wish you all a very good weekend, and hope you stay away from any colds or flu. I'm sure you can guess what's on our menu for dinner tonight ....yes chicken soup!

Disappearing food - December 16th 2012

Many years ago, I was hospitalized for a bone crises (Gaucher chronic bone pain usually lasting several days). The hospital was full to capacity, so placed in the internal ward, my bed was parked in the busy corridor. The trolley serving breakfast nosily clattered as it was pushed from room to room, and finally it arrived at me, stuck in the corridor. My breakfast tray was placed on the stand, and the lady hurried off to complete her duties. I re-arranged my pillow and making myself comfortable turned back to my breakfast try. The stand stood bare - no breakfast in sight - it had vanished into thin air. I hastily looked around me but no sign of it. After some time I managed to get the attention of a passing nurse, and told her I had not had breakfast. She immediately went off in search of the lady with the trolley, and the two of them returned to my bedside. The catering lady looking at me suspiciously was insistent that she had given me breakfast and showed the nurse a list with everyone's names on it who were to receive food. The nurse eyeing me closely implied politely that maybe I had forgotten eating my breakfast and that another member of staff had removed the empty tray. I had no defense, and not wanting to make a fuss, I let it go. My husband arrived, and I told him the story of my mysterious disappearing breakfast, so he bought me a sandwich and coffee from the cafeteria. Some hours later, still in the corridor, wishing very much to be sent home, lunch time arrived. The catering lady warily approached me with hesitation, saying in a loud voice as if to stress the point, "here is your lunch". She placed the tray on the stand, and once again I sat up and got myself comfortable to eat lunch. A minute had barely passed before I turned around and found the tray had vanished once again! I couldn't believe my eyes, and scanning quickly all the people around me, alas no lunch in sight. The catering lady passed by my bed, and I stared at her but did not utter a word, for fear of ending up in the psychiatric ward. I went without lunch, but thankfully late afternoon, they had found space in one of the rooms, so finally I left the chaos and noise of the corridor. Supper time arrived, and a different lady now on duty cheerfully placed my food on the stand. However this time I was ready, and sitting up, pillow positioned, I clung to the tray with both hands. As I let go to pick up my knife and fork, a pair of arms deftly moved in from my side and grasped the tray. I quickly dropped my cutlery and grabbed hold of the tray and looked up into the face of the culprit who had been taking my food all day. Seeing he had been caught red handed this time, and that it was fruitless to stay a moment longer in my room, he quickly left. So mystery solved; I finished my supper, and later found out that this old man was in fact not a patient, but camping out at his wife's bedside in the next room. He had no money for food, so was using great initiative, taking my food in the hope I would be given a second meal. After a day or two, I was released from hospital, and upon leaving, just as lunch was being served, knowing I would be able to eat something at home; I took my tray into the next room and placed it on the man's lap. I didn't look at him, but could feel his eyes upon me. Without a word, I simply turned about and left.
Mortality rate - December 17th 2012

Now here's a subject you wont find too many talking about. Most people don't like to think, let alone talk about the shortened mortality rate of having Parkinson's disease. Undoubtedly, Parkinson's is not a terminal disease such as cancer, and there are many who live with Parkinson's until a ripe old age. Even young on-set Parkinson's cases, such as Michael J. Fox who was diagnosed over 20 years ago, is still going strong and will hopefully be with us for many years to come. Parkinson's by very nature being so individual, each case different, the manifestations and degree of severity, along with the unknown additional element of whether some instances are hereditary whilst others are clearly not, makes life expectancy predictions almost impossible. In my particular case, where Parkinson's is more than likely hereditary (my father and brother both had Gaucher and Parkinson's like myself), when I found that no insurance company was willing to cover me for life insurance, clearly there are justifiable reasons to question the mortality rate of a person in my individual situation. I was once very upset to hear someone question me harshly, after my father passed away, as to the cause of death. I told the person it was written on his death certificate "Cause of death: Parkinson's". How much clearer can one be? Yet the person insisted that one could not die of Parkinson's, and although there were contributing factors that finally led to his death, those affects were undeniably caused by Parkinson's. The National Parkinson's Foundation quote: "While Parkinson's disease itself is not fatal, The Center for Disease Control rated complications from Parkinson's disease as the 14th leading cause of death in the United States." I have brought this subject matter up, as little information on any of the major Parkinson's sites refer to this, and I think it is a very valid question, that let's face it, is in the back of all our minds. By not asking difficult questions or talking about unpleasant topics is merely behaving like an ostrich who sticks his head in the sand. I have been called many things, but an ostrich is not one of them! To leave you with a positive thought, please take a minute and look at this link telling a courageous woman's inspiring story.

Sore eyes - December 18th 2012

I had wondered why my eyes were stinging most of the time, but figured due to lack of sleep, who's eyes wouldn't be sore! Oh what joy - I find that this is merely yet another symptom of Parkinson's and that my eye lids are simply not blinking as regularly as a healthy person. This disease really does cover a wide gamut of symptoms and has left little out. From insomnia, fatigue, lack of balance, change in gait, dragging of left foot, arms that no longer swing when walking, lost dexterity in fingers, aching muscles, stiffness and rigidity of body, toes that constantly curl under, hunched shoulders, loss of depth perception, no sense of smell, resting tremors, shaking and dystonia, constipation, nausea, difficulty in swallowing, choking on food, expressionless face (masking), internal tremors and anxiety, cognitive problems; have I missed anything out? The list is long and disturbing.

We have quite a number of heavy old photo albums, and so to keep me occupied, my husband showed me how to scan each photo into the computer. Now all the photos are safely on a disk and much easier to store than huge albums. This ended up being a much longer project than I'd anticipated, and whilst scanning, I was looking at myself wondering how on earth I had changed so much from a slim vivacious energetic person with a huge beaming smile, to what I see in the mirror today. Looking at the pictures brought back so many memories, each birthday, anniversary, national holiday, any excuse for a celebration - we made one. Little did I know back then what awaited me. Sore eyes or not, I was determined to finished the project of scanning all our old photos in, and although it took me a few days, these wonderful memories in pictorial glory are now safely stored.

Olive Oil - December 19th 2012

When my parents-in-law first met me (and we're talking about many years ago) I was extremely thin. I'm not talking about slim, or lean, but exceedingly wiry, and they gave me the nick name of Olive Oil (Popeye's sweetheart). I was so thin, that I had to buy clothes in the children's department when I was an adult - talk about embarrassing! The other day my daughter surprised me by buying me a t-shirt with Olive Oil dancing across the front in a comic gangly prance, and laughed when I saw it for I had no idea she knew what my nick name had once been. No longer am I slim or lean. There's much more of me to hug these days! I used to walk the dog for hours in the fields and in the forest and sadly now less mobile, I am not able to do this cardiovascular exercise, that I enjoyed so much. Along with my age and not forgetting Mother Nature's wonderful gift to woman that quite frankly we could all do without: "the menopause"; ridding myself of those annoying extra kilos is becoming a lost cause! So I may not resemble Olive Oil any more, but her spirit still dances on inside me.

Amazing progress - December 20th 2012

We are all waiting for a miracle to happen, and all over the world scientists and doctors are working tirelessly to find a cure or treatment to stop this devastating disease. A very exciting new technique is being tested in Canada, where they are performing a revolutionary treatment with ultrasound to stop essential tremors. Using an MRI machine, ultrasound beams are directed at the part of the brain, killing the cells that are causing the uncontrollable tremors. The procedure does not require anesthetic or any form of cutting, and the patient should be able to return home the same day after the procedure. Although still in its infancy, and only five patients have so far undergone this technique, the results are looking very promising. This incredible new progress, could very well pave the way for new methods of treating Parkinson's. It's very exciting and gives one hope. Take a look at this link and see for yourself!

Meds not meant for me - December 21st 2012

Having been hospitalized on many occasion, I am very familiar with hospital procedure and know what to expect. On one occasion, being admitted with chronic hip pain due to Gaucher disease, a rather enthusiastic young doctor, intent on completing his assignment, came rushing into my room. Holding an eye dropper, he asked me to lean my head back so he could administer the drops. I told him that he had the wrong patient, for there was no logical reason a Gaucher patient with hip pain would need an eye examination. Irritated at my noncompliance, he told me I was the patient and he was the doctor! This was blatantly obvious, but I insisted that he had the wrong patient. I categorically refused to allow him to give me the drops; telling him to check with his superiors. Exasperated he left my room, and came back holding a medical file, pointing inside that the drops were to be administered. I asked him what name was on the file, and he told me, "Mrs. Benson, do you really think I would have the wrong file?" "Absolutely yes" I answered. "My name is Mrs. Benton!" With a shocked expression, he took a second look at the surname on the file that said Mrs. Benson, and then glancing at the chart hanging off the end of my bed, he could clearly see my name was Benton! Now what is the moral to this story you may be asking! There are two points I would like to make. Firstly if there should happen to be someone in your ward with a very similar name; be aware and ensure that files, and patients names are not confused. Secondly, don't feel embarrassed or awkward questioning something that doesn't sound right. I knew I didn't need eye drops - there was no way a Gaucher patient with hip pain would need an eye examination! This story bears does not detract from the hospital's fine reputation, but merely highlights how hospital staff are often under tremendous pressure, working long hours, and are only human - we can all make mistakes.

Stress \- December 23rd 2012

Statistics show that bereavement, divorce and moving home are the most stressful events in one's life. We are about to move house, so I concur wholeheartedly, for this has been a very stressful time, and I would not recommend it at this point/stage in my medical condition. As we all know, stress and Parkinson's just don't go together! Stress is one of the biggest contributing factors that exacerbate the disease at an alarming rate. We should have moved into our home some years ago, when I was in a much better state, but circumstances beyond our control have delayed this process. Now in poor health, moving house is going to be that much harder and it will take every ounce of energy that I possess. Quite frankly I don't know how I am going to get through this period of time, but if you've been following my blog, you'll know me by now, and what I lack in physical ability I more than make up for in strength of spirit and great determination. Thankfully we have family and good friends who have kindly offered their help and we much appreciate the thought. Once we are moved in, life will be much easier, for everything has been especially designed around my needs. I will be over the moon to unpack and throw away boxes once and for all (although in the spirit of being 'green' we'll recycle the boxes!). Retirement homes often recommend people moving in before they 'need' to, so that they make the adjustment whilst still relatively healthy, and not to leave it till its too late, when it becomes a huge transition and far more difficult physically and emotionally to make this change. Making big life changing decisions is not easy, but take a leaf out of my book, and don't leave it till the last minute.

Mulled Wine - December 24th 2012

Today I just don't feel like writing about Gaucher, Parkinson's or anything to do with health. Feeling distinctly cold this morning, my thoughts are on comforting hot drinks and food. Instead I am going to give you my recipe for mulled wine, which I hope you will enjoy as much as we do. With the chilly winter days, I always notice how quickly it gets dark in the evenings. Having some friends over, a bottle of chilled white wine doesn't sound very appealing on a cold night, so I am making a batch of mulled wine. Our guests will be greeted by the wonderful inviting smells of this warming drink, as it keeps hot on the stove in a large cauldron.

Mulled Wine (makes about 12 glasses)

1 bottle dry red wine

1/2 cup brandy

2 cups of orange juice

1 cup of water

1 sliced orange

1/2 cup of sugar

10 cloves

2 cinnamon sticks

1/2 teaspoon grated nutmeg

A small nob of peeled ginger

Push the cloves into some of the slices of orange to save them floating around, and add all the ingredients to a large saucepan. Heat slowly, stirring until the sugar has dissolved. Make it several hours before you want to serve it. Once it has heated through, turn off the heat and allow the spices to infuse. Simply heat up gently when your guests are about to arrive. Do not bring to a boil - you just want to keep it hot. I used to dip the rims of the glasses in sugar which adds an elegant and festive touch, but with my shaky hands, I think I'll give this addition a miss this year.

Have a lovely day and an enjoyable evening.

It's a wonderful life - December 25th 2012

The film "It's a Wonderful Life", a much loved favourite starring James Stewart, is often watched at this time of year during the Holiday season. If Clarence (an angel in the film) were to magically appear, revealing what life would have been like, had you never been born; would you end up embracing the life you have, even if like myself, you suffer from ill health? James Stewart who plays the leading role of George, understands at the end the film, that however insignificant we might feel, the small role we may have been assigned in life, sometimes plans going awry; this is the life we were supposed to lead. We may play some small part in the bigger picture, but had we not been here at all, things may have been very different. I like to believe that we can all make a difference - the impact may not seem monumental, or earth shattering, but like a domino effect, every action, each word spoken or written, may have changed or touched someone at a crucial point. I am sure that most people have done something during their lives, possibly that they are unaware of, that has made a significant impact on others. For those who are celebrating the Holidays I wish you seasonal greetings and a truly wonderful life!

Being Social - December 26th 2012

If you have Parkinson's then you will understand and be able to relate to what I am saying today. If you do not, I hope that I manage to convey what often is not understood, yet is actually part of the disease. Maintaining one's social life is very important - both for sufferer and caregiver. However going out, whether to a restaurant or to someone's house can put considerable stress on someone with Parkinson's. Even though it might be a party to celebrate a happy occasion, the thought of meeting someone I don't know, and having to explain once again that I have Parkinson's, or seeing someone who I've not seen for some time, realising they may be shocked at a decline in my condition all causes stress. In a situation where there are multiple conversations going on, I find it very difficult to follow, and need to focus on just one person. I find noisy environments are highly disturbing, and often at a dinner party I am the last one to finish eating. Trying to make conversation and eat at the same time, as simple as this may sound, for a Parkinson's patient, becomes quite difficult. Loud music can also cause interference in a social setting, along with loss of facial expression and fatigue. All these seemingly small things, are HUGE to a Parkinson's patient, and can often deter one from going out. Many patients are reticent about venturing out socially, yet however difficult socializing becomes, it's an important part of our lives, and essential to one's emotional welfare and that of our family to maintain a social life.

Gynecology - December 27th 2012

All women, at some point have to visit a gynaecologist and regular check-ups, just as one has with the dentist should be made. So why is it that most of us will find any reason or excuse to put off making an appointment? I'll go if something is painful or clearly wrong, but otherwise, this is one doctor that I avoid at all costs, as I conveniently forget. To be honest, most women would rather scrub the oven, clean the toilet, de-scale the kettle, or any tedious unpleasant job around the house, rather than go the gynaecologist. After completing mind-numbing house chores one feels quite virtuous, but niggling in the back of your mind, is the guilty thought that you still haven't been for a check-up. So what is it that is so off-putting? It's not hard to figure out - there aren't too many medical examinations that could be more undignified than removing one's underwear, feet in stirrups, legs spread wide apart; revealing one's feminine parts that normally don't see the light of day. As I lay there, trying to look calm and relaxed, staring at the ceiling, I wonder what makes a person want to be a gynaecologist. Delivering babies I can understand - bringing new life into the world, seeing the happy faces of mother and family - a more joyous and fulfilling medical career would probably be hard to find. However, pap smears and general check-ups just leave me cold, and puzzled by any doctor who would want to specialize in this field. I apologise if I am offending any gynaecologist who may be reading this, but come on; it's a question that us ladies often wonder about, but never have the guts to ask! What made you become a gynaecologist?

Find a Neurologist - December 28th 2012

On the National Parkinson's Foundation site, I found an article that appeared in the October issue of the journal 'Neurology' and Willis and colleagues address an issue that I have written about for two years now. From personal experience, I strongly believe that a Parkinson's patient should be seen on a regular basis by the same neurologist, enabling a base line to be made upon the first appointment and further visits reveal a true and clear picture, especially if there is any deterioration or adverse affects of medications. Seeing a neurologist who has experience with Parkinson's is the best scenario and has a huge beneficial impact on the patient and caregiver, ultimately resulting in better care, quality of life and improved survival. I have been under the same neurologist for nearly 6 years now, and know that he notices the slightest change, and it's thanks to his care and knowledge that I'm in the condition I am today. I dread to think what I would be like now, had I not been so fortunate to be placed in his care. If you need a hip replacement you would see an orthopedic surgeon, and a cataract would require an ophthalmic surgeon. So why would you not go to a neurologist when you are dealing with Parkinson's'? To me it's common sense!

World Parkinson Congress - December 30th 2012

Did you know that every nine minutes someone is diagnosed with Parkinson's disease! Just think of the rapidly growing numbers of sufferers, so the quicker we find a cure, the better life will be for millions of people around the world. The World Parkinson Congress is taking place in Montreal - Canada from 2nd till 4th October 2013. For three days, leaders in the field will be brought together from around the world giving presentations about current research, discussing latest medicines and best practices in care, also incorporating creative arts and patient/family perspectives. With such huge input from all sectors, the Congress offers great potential for dynamic ideas, networking, support, and should have a huge impact on professionals in the medical field along with patients and caregivers. The previous Congress was held in Glasgow \- Scotland, but Canada is much further away, so unfortunately I doubt I'll be attending. Travelling long distances is very difficult for me, and although the Congress will be highly interesting and worthwhile; in my present condition, I would not be able to sit still for the many hours required listening to lectures. I presume that there must be many patients who like myself would love to attend, but are not in good enough shape to make the journey or endure a three full day Congress with hundreds of other people. What a strange scenario - a Congress especially for Parkinson's - and yet many patients may not be able to attend due to the very nature of this degenerative disease. Please take two minutes of your time to watch this important clip on YouTube.

Farewell 2012 - December 31st 2012

We bid 2012 farewell and look back on memories of fun times, achievements we're proud of, the goals we've reached, remember fondly those we've lost, and hope that the coming year will prove to be a better one for us all. Maybe this will be the year of miracles - the year they find a cure for Parkinson's. Now that would make it a very special year! Living life with no regrets has always been part of who I am - and this past year has been an amazing journey for my family and me. Living with Parkinson's is like participating in some sort of endurance test or a course that my name was put down for without prior knowledge. Through life experiences we all grow a little wiser, and these are the principles that I take with me into 2013:

To accept who you are and your circumstances without questioning "why me?"

To gain from an unfortunate experience, to grow and become all you can.

To have respect, empathy and understanding for all those around you.

To respect yourself, and hold your head up high despite any failings.

To treat others how you yourself would want to be treated.

I wish you all a Happy New Year, and let's hope that this coming year will be a happy, healthy and peaceful one for us all. Listen for a moment to a Parkinson's prayer.

Farewell to 2012 and welcome 2013!

New Year's resolutions - January 1st 2013

Happy New Year to you all. If you partied last night and are a little worse off for wear this morning, then go and make a pot of coffee and we'll have breakfast together. You may live half way across the world or simply around the corner, but through the Internet, we are brought together. I am sitting here in my kitchen, the rest of the household still asleep, and yet I am with you, as I sip my coffee, and talk to you on this chilly but bright day. Waking up this morning, realising another year has gone by, we reflect over precious times; wondering what the future holds in store, and what the coming year will bring. Making new year's resolutions is easy, but keeping them; that's the hard part! My new year's resolution will be the same as it's always been; to enjoy life to full, not waste a moment and spend as much time as possible with those I love. I thought I would start the new year off with a poem. I wrote this in 2011, but it was written about an event that nearly cost me my life. The human spirit is extremely resilient, and clearly I have much left to do in this life, otherwise I don't think I would still be here. I have not published this poem before, so you are the first to see it:

A Wish

By Elaine Benton © 2011

Adorning endless skies of blue,

Feathery clouds gently float,

Lightly moving with soft winds,

I heavenly sail a cosmic boat.

Darkness falls, tiny lights appear,

Brilliant stars illuminate the night,

Grant my wish, star vivid up high,

With all my heart, my eyes close tight,

I once journeyed to the other side,

But twas not my time to leave,

Back to life, earthbound once more,

I've more time than you believe.

Another day with Parkinson's - January 2nd 2012

Life is hard - even if you don't suffer from ill health, in today's world, it's not easy to make ends meet, and to uphold a certain standard of living. With the economy worldwide in poor shape, a disabled person, often on a small disability pension; times can be very hard. There are so many extra expenses when chronically ill, and if one were to chart all these additions, it would be quite shocking, as they add up to a tidy sum. The financial side is generally overlooked, and no one, unless in your shoes, knows how difficult life can be. To give you a few simple examples:

Purchasing prescription medications.

Purchasing additional medications that require no prescription which are considered "alternative" or "holistic" medicines and are usually highly expensive.

Any special equipment, walking sticks, crutches, wheel chair, hand rails for bathroom, raised toilet seat, electric bed, heating pads, good shoes or house slippers with proper support.

Loss of spouse's income when spending the day in hospital, not counting all the doctor's appointments, time spent going to the pharmacy, plus car parking charges in medical centers and hospital car parks.

Often little or no time to take food and drink with to hospital, one ends up spending money in the hospital cafeteria.

Much time is spent contacting various authorities when chronically ill and in need of assistance. The amount of running around, bureaucratic forms that have to be filled out by not just your doctor, but an array of health officials, takes precious time, and again, if the person who is ill cannot get to these offices, then the spouse who brings in the sole income for the family, has to once again take time off work.

Although the saying "money can't buy you health" is true, but having money makes life much easier and just a little less fraught when chronically ill by alleviating the financial burden.

Childhood days - January 3rd 2012

I dedicate this poem to someone special who has a birthday today.

Memories of childhood days I find,

When summer colours float through my mind.

Of the days I spent when young by the sea,

Playing on the beach barefoot and free.

Picking strawberries, and blackberries too,

Telling endless stories for your sister and you.

We shared many times, I cannot forget,

Memories raced back, when we last met.

The wind in my hair, and salt on my face,

Sand in my shoes and all over the place.

Sailing, a huge part of my life it became,

Once you've sailed, things are never the same.

Black Wellington boots, and duffle bags,

Wet creosote and oily rags.

Rounds of sandwiches and flasks of tea,

Of my childhood, these remind me.

Millbeach, is a part of my past,

And forever the smell of the sea shall last.

For these memories of childhood days I find,

When summer colours float through my mind.

Written by Elaine Benton ©2013

Fashion tips - January 4th 2013

My sister-in-law has an elegance about her and no matter what she is wearing she always looks chic. Clearly this runs in her family as her mother and sister also possess this attribute, which annoyingly, I seem to lack. Either you are born with this innate sophistication or you're not. Unfortunately I was not endowed with grace or style and it has taken me some years to learn these things which do not come naturally to me. Admiring my sister-in-law's new boots, I realised they were perfect for me; and just what I had been searching for. A short comfortable boot easy to pull on, no zips or laces; a flat pliable rubber soul that looked non-slip, stylish yet simple - I couldn't help but ask where she had bought them. Finding footwear that is comfortable, easy to put on and take off, that one can safely walk in and are attractive, is a tall order to say the very least. This year however, there seem to be a large range of ladies boots in the shops, so if you need a pair of boots, now is the time to buy. A friend of mine who runs "Wardrobe" offering women advice on dressing for any occasion, having been in the fashion business for many years gave me a few more tips, one of which was to invest in a pair of classic earrings, (if you don't already own a pair) that you can wear all the time and sleep in, thereby eliminating the need to remove fiddly earrings when going to bed. She told me that to achieve a good look - the earrings should be in proportion to your face, a thought which had never crossed my mind. Another item that may be overlooked is if you wear glasses; again it's worth investing in good frames that suit your face, after all, glasses frame your eyes, which is the first thing people see. I made a short poetry reading on YouTube during 2011, and was shocked when I happened to see it the other day. My hair was so long (this was before my "make-over") and I still had facial expressions. My face now often frozen, makes me feel very self conscious. During a clinical trial several years ago, I was video taped walking, and my picture was taken so there would be a pictorial record of my facial expression. If they were to take my picture today, they would no doubt clearly see the difference - a sort of before and after picture, except usually the 'before pictures' are awful and the 'after pictures' are the ones that make us go WOW! Parkinson's seems to turn everything upside down and back to front!

Falling - January 6th 2013

Due to lack of balance, Parkinson's patients are prone to fall, and this can lead to a myriad of problems. Having fallen several times, I have been lucky so far not to have done any serious damage, but my most recent fall was a different story. Making sure that one's home is disabled friendly includes having a clear path to walk throughout the house, and unfortunately due to our recent move, packing boxes everywhere, resembling a warehouse, it became a slalom course getting from one room to another. Falling one day, I landed on my face and hit my jaw bone on a hard surface. I had terrible pains in my lower jaw, and convinced it was just bruised, I didn't go to the doctor, which on hindsight - was probably not a wise move. If you do fall, don't wait; go to your doctor. This is a classic case of "do as I say and not as I do. "After several days the pain persisted, not only in my jaw bone but spreading to my teeth, radiating up towards my ear. This did not look like a good sign! I felt like my teeth were erupting and so immediately made a visit to our wonderful friendly dentist, who I trust implicitly. After x-rays and a thorough check-up, thankfully he found no fractures or visible damage to my jaw bone or teeth, but the trauma that my jaw and teeth sustained from the fall, is definitely going to take some time to heal. To refrain from falling is extremely important, and any loose rugs or carpets, small items left on the floor that should not be there, or large packing boxes that are simply in the way, is an accident waiting to happen. If your balance is poor and you are unsteady on your feet, use a crutch or walker to ensure you don't fall. No one likes to be seen with a walking aid, but put vanity aside and make safety your first priority. Falling is no joke, so make your surroundings appropriate and avoid serious injury.

I sail in my dreams - January 7th 2013

Have you ever looked in the mirror and wondered who on earth is staring back at you? Parkinson's is slowly stealing away my smile and expression. Now if I were a Poker player, this would give me a distinct advantage, but other than that, it makes if very difficult for others to know what I am thinking. I barely recognise myself any more. The reflection staring back at me has no expression, just a blank empty look. Recently I went sailing with my husband, and whilst he steered the helm, hoisted the sails, tacked back and forth; I sat like a lady of leisure, unable to be of help at all - although I did make the sandwiches! At one point my husband looked at my 'masked face' and unable to read what I was thinking, asked if I was feeling sea sick. Fortunately I was not, as there was little wind and the sea was as calm and still as a millpond. "No I feel great" I answered, thinking back to the days of my youth when I dreamt about circumnavigating the world - a sailing expedition that would be an experience of a lifetime. This never came to fruition, so I sail in my dreams and live through the excitement of others who have achieved their goals. I am in contact with the author, Lois Joy Hofmann, who circumnavigated the world with her husband - intrepid adventurers visiting many countries and experiencing life at sea, a far cry from the corporate world they left behind. Lois has just had her latest book released 'Sailing the South Pacific' - a wonderful read for anyone who has a passion for adventure and sailing, experiencing life to the full.

Moving house - January 8th 2013

After almost 7 years of planning; designing, dreaming, much frustration and waiting, we finally moved into our disabled friendly house which has been built especially with my needs in mind. Packing up an entire household is a mammoth job, and I was ruthless when it came to getting rid of unnecessary clutter that we are all guilty of accumulating over the years. I started packing way in advance, as I could only manage a little each day and found it an exhausting and time consuming job. If a piece of clothing no longer fits, and you haven't worn it in a few years - get rid of it. The same applies to household items that are either broken, not used; simply taking up space and gathering dust. Obviously certain sentimental objects one wants to keep, that remind us of good times or loved ones who are no longer with us. The day arrived to move, and a feeling of excitement along with the surreal feeling that this was all a dream, after waiting so long, made for some very mixed emotions. The removal company efficiently and quickly performed their job, and within a few hours we were surrounded once again by boxes, but now in our new house. I would like to thank all our family and friends who have helped us in various ways; from bringing us prepared food so we wouldn't have to cook for the first days, doing laundry as our washing basket started to overflow, and helping to unpack the kitchen ware. I am very grateful for this wonderful and most practical help at a very stressful and physically challenging time - thank you! Going to sleep the first night in our new home was very exciting, but as thrilling as it was, exhaustion finally took over, and I think we all fell asleep as our heads touched the pillows. Life will be so much easier for me now, living in a house especially designed with Gaucher and Parkinson's in mind. We have tried our best to take every aspect into account, but no doubt there will be something that we forgot or overlooked.

Spirits lifted - January 9th 2013

We have lived for some years in a very small apartment, totally unsuitable for a disabled person. The doorways and corridors not wide enough to allow a wheelchair through; a dangerous slippery bathroom tiled floor, steep steps leading out into a tiny garden, were some of the problems to mention a few. A more unsuitable apartment would be hard to find! Although cozy and charming; having made many happy memories there, it was time to move on, to somewhere that suited my needs. Now in our house that has been made especially with my disability in mind, life should be more comfortable and already feeling at home in our new surroundings, my spirits feel lifted. Waking up the first morning, seeing the sun streaming in through the windows, and looking around, was a fantastic feeling. Taking a shower was a pleasure; the non-slip floor tiles gave me a feeling of security and safety. It will take me some time to recover from this move, and running on adrenaline and pushing myself to the limit, has now left me depleted of energy and worn out. My husband has born the brunt of all the anxieties and organizing things, running here and there, and somehow holding it together throughout the last few months, which I am eternally grateful for. It has been a very difficult period for him, working full time, and building our house whilst taking care of me, ensuring I was relieved from any stress or worries. As anyone with Parkinson's knows, anxiety exacerbates the disease at an accelerated speed. However, we are thrilled to be here and have no intention of ever moving again! I would love to tell you of all the disabled friendly features that we've incorporated into the house, but you will have to wait for another day. I'm afraid it is taking a great deal of effort to type this morning. So I will bid you all a lovely day wherever you may be in the world, till we meet again tomorrow.

Home sweet home - January 10th 2013

What a pleasure it is to finally be in our house - I feel so at home and comfortable that I could happily never venture outdoors again! But don't worry, I'm not going to become like the great Hemingway and turn into a recluse! Although I do wish I had his incredible talent for writing; becoming one of America's classics, still highly regarded today. I might be tempted to stay home a while enjoying the house that we have planned, talked about and dreamed of for so long, but I'm sure to venture out once things get straight. Trying to think of every eventuality, building a disabled friendly house, and with old age in mind, we sought advice from wheelchair bound people, who have built their own houses, to social workers, doctors, physiotherapists, sales people in shops selling bathroom fittings specifically for the handicapped, and of course there is a fortune of information on the Internet. Our builder very soon understood my requirements, and together with his in-house architect we worked closely together creating a suitable living environment. All doorways are 90 cm and corridors are one meter wide to allow wheelchair access. My side of the bed is closest to the entrance of the bedroom and right next to the en-suite bathroom, with plenty of room to manoeuvre. All light switches in the house have been lowered, and hand rails installed next to the toilet and shower. The non-slip flooring in the bathroom is amazing. I thought it would feel rather rough (like sandpaper) underfoot, but it is quite comfortable to walk upon and certainly much safer than regular floor tiles. I've also been told that it is fairly easy to keep clean. The kitchen has easy pulling out drawers that accommodate most of the things I use on a daily basis, and the cupboards that are higher up and out of my reach, are for wine glasses and all those things that I would prefer not to touch and risk breaking! The garden has yet to be done, and at the moment is a muddy bare area, but it will have raised flower beds so that I can reach with ease, which will be filled with plants that are hardy and require little maintenance. I can't tell you how this move has lifted our spirits and boosted our morale. It has literally given me a new lease on life. One's emotional state is very much connected to Parkinson's - any anxiety or stress greatly exacerbate the disease at a scary and alarming speed, and equally any good news or changes for the better have a great positive effect almost pushing this rotten disease to the side lines for a while. I think 2013 is going to be a very good year!

An amazing man - January 11th 2013

Today's blog, is dedicated to my amazing husband. Like a heaven sent angel who has no wings, my dearest has the patience of a saint. He must have very broad shoulders to succeed in working full time, taking care of me, and just completing building a disabled friendly home especially with my needs in mind. He takes everything with a pinch of salt, and remains calm when others would possibly be tearing their hair out. How he manages to achieve all he does is beyond me. When we fell in love and married, he knew I had Gaucher disease, but neither of us could have imagined what the future held in store, and that by some cruel twist of fate, I would be diagnosed at age 44 with Parkinson's. Many spouses would run as fast as they could from a situation such as this, but not my man. He steadfastly stands by my side, sometimes understandably with a pained expression as I repeat myself for the umpteenth time, or take forever to do something simple as making a cup of tea, breaking yet another glass or dish, and am now far from the capable young vibrant woman he married. He never complains, and stays cheerful and ever hopeful, supporting me in every way possible, encouraging me to write and continue campaigning for Gaucher and Parkinson's. I told him he never need buy me another present, for he has given me all I could possibly want and need. I have the best husband in the world who I cherish, a loving daughter, and now a beautiful purpose built home which I would never have dreamt of having in a million years. I have so much to be grateful for, and despite suffering two diseases, I am truly blessed. Thank you my darling husband for all the wonderful times we've had and the great memories we've yet to make together. You are one of a kind, and I marvel at how after all these years you still manage to surprise and amaze me; you continue to take my breath away. May we have many years filled with happiness ahead of us. I only wish I could give you even half of what you have given me, you deserve so much more. I have always loved you with all my heart and always will.

Happy Anniversary

I fell in love with you a long time ago,

What future held in store, we did not know,

My heart beats faster, with every breath I take,

Together side by side, with each step we take,

My chest could burst, so full, may overflow,

Emotions run fast, no way to make them slow.

Only one man, holds the keys to my heart,

You held my heart strings, right from the start.

Those strings are strong, and never shall break,

Everlasting are they, make no mistake.

There's a place in my heart, only you can fill,

I've forever loved you, and eternally will,

Written by Elaine Benton - 2013©

Intolerance to noise - January 13th 2013

Moving house is a tense time for anyone, but for someone with Parkinson's, it can be a nightmare. Recently having labourers finishing various things in our house, making a mess, sometimes leaving a thin film of white dust like a ghostly shroud covering everything in sight, the noise of many workmen coming and going, shouting commands to each other; all this commotion really grates on my nerves. After several days of an unsettling disturbing atmosphere, I began to feel quite unwell. Thankfully there is very little left to be done now, and just the garden is left to be planted. I've found that Parkinson's has made my hearing very acute, creating an intolerance to loud noise. If music is too loud it becomes almost unpleasant, even if its something I enjoy listening to. Loud bangs, or heavy machinery, people yelling, and even scraping of chairs in a restaurant, all aggravate and cause tension. It's almost as if I have super hearing powers with an audible range like Superman. I don't know if any others with Parkinson's experience this peculiar phenomena; I'd be interested to hear. Although I've lost my sense of smell, and my eyesight is appalling, my hearing has somehow become heightened, and yet the volume of my voice occasionally becomes very hard to hear. Go figure! who can explain the many strange symptoms bestowed upon the unlucky individual with Parkinson's disease?

Soft landing - January 14th 2013

Falling is a common symptom of Parkinson's, and can cause complications that one frankly can do without. I fell again recently, on the day we moved house, but luckily fell into our dog's bed providing a soft landing. We have a huge dog, and therefore her bed is extremely large, but I did however bang my head hard on the ridge of her bed. Laying there with my legs ungainly hanging over the end of her bed, must have been quite a comic picture, and our dog curiously nuzzled me, baffled as to why I had decided to take a sudden rest in her bed! Although thankful to land on something soft, the thought of laying there in our dog's smelly, hair covered blankets made me want to jump into the shower immediately! The removal van had just arrived, so my shower had to wait until the evening once we were in the new house. One of the workers from the removal firm saw me fall, and thoughtfully gave me a drink, and although I appreciated his concern, it made me wonder why people always offer a glass of water or a cup of sweet tea when something unexpected happens. I think the gesture actually makes the onlooker feel better and gives them something constructive to do, rather than actually helping the person in distress. Although the workers were unaware of my medical condition, once they saw my crutches, wheelchair and i.v. stand, I think it was pretty clear that I'm not in the best of health. I don't know of anyone who likes moving house, and I have moved more times than I care to remember, so I have no intention of moving again. Home is where you hang your hat, and my hat is out of its box and hanging on the wall. I'm not going anywhere - I'm finally home!

Quality of life - January 15th 2013

Since moving, the quality of my life, not to mention that of my family, has improved vastly. The nurse arrived at our new home, to administer my Gaucher medication, and it is such a pleasure sitting in the lounge, looking out, the sunshine streaming in through the windows filling the entire room with light and warmth. As I sit here writing this morning, attached to the i.v. having my home treatment, I realise the enormous improvement a well thought out disabled friendly house can have on the quality of life for someone like myself. Should I need to visit the bathroom during the hour and a half infusion, which inevitably happens - it's Murphy's Law; this house has wide corridors and doorways, enabling me to wheel my i.v. stand and enter the bathroom without a problem. Living in a safe and comfortable environment really makes a huge difference. I knew life would be easier for me, but until actually moving in, I had no idea to what degree. The design and thought spent on this house, has affected me in a huge positive way. Some of the features may sound small to those who are healthy, but some of the little things, such as the design of the kitchen, is a huge transformation for me. For example, there is a kitchen island, giving me something solid to hold onto should my balance be off. The kitchen tap has a robust lever which is easy to grab hold of for anyone with Parkinson's. The man in the shop tried selling us a more stylish slim tap with a spindly lever, but once I explained the lack of dexterity in my fingers, he understood, and brought out last year's designs from the back of the storeroom, which were far more suitable to my needs. So I have last year's tap design - it doesn't bother me! Instead of cupboards, I have pull out drawers containing all the necessary things I would use on a daily basis, which are far easier than regular cupboards with fixed shelves. I am extremely happy with the way the house has turned out. It is undoubtedly well worth investigating, and finding out as much information as possible, from professionals in this field and also gleaning advice from disabled people who may have valuable personal experience.

Live in hope - January 16th 2013

Parkinson's by very nature, makes its unwelcome presence felt constantly and doesn't let up; with great momentum continuing to antagonise the sufferer 24/7. It affects every aspect of one's life including that of close family and friends who are brave enough to stick by you through thick and thin. With heightened awareness, the vast amount of research and development going on around the world, looks very promising, with new procedures producing positive results, a cure or treatment has to be very close. So many pharmaceutical companies are tirelessly working to be the first to come up with a wonder drug, as if in some sort of race. It is indeed a race, for many of us are running out of time. I had a sudden thought, or maybe a wishful daydream, wondering what it would feel like to actually be cured. No more shaking, tremors, falling down, and all the other horrid symptoms and side effects from the many medications patients depend on to make it through each day. I closed my eyes to imagine what it would be like to live a normal life again. How dearly I would love to be re-introduced to the world from which I have now been excluded. The thought of walking briskly with my dog through the forest, or running with her on the beach, strolling hand in hand with my husband along the sea front, or even something as simple as getting out of bed unassisted and without all the groans that make me sound and look like I'm a 100 years old. Some dream of fame or fortune, others of winning the lottery - but I dream of the day a cure is discovered and made available to all those in need. I live in hope.

Planning ahead - January 17th 2013

In answer to some of your questions regarding making a home as comfortable as possible for a disabled person, with low maintenance and safety high on the agenda; here are some of the small, yet essential things we picked up on our learning curve of designing a home based on my needs. These ideas are applicable not only for disability but also practical tips planning ahead for old age.

The biggest and most obvious feature making all doors and corridors are large enough to allow a wheelchair or Zimmer frame to comfortably pass.

Make sure your bathroom mirror is measured and positioned at the correct height, by sitting in a wheelchair in front of the place you intend hanging the mirror. In our bathroom, the mirror has to be hung relatively low to ensure that I can see my face whilst in a wheelchair, yet it has to be high enough for my husband to see himself when standing up. Hence our bathroom mirror has to be quite large to take into consideration both heights.

The kitchen tap has been placed a little further forward than in a regular kitchen, so that I need not bend over or have to stretch to use the tap, and as I mentioned the other day, instead of having the fashionable spindle like lever, we opted for last year's fashion where the lever is far more robust and easy for those with little dexterity.

The toilet roll holder and the safety hand rails are clearly best positioned if you sit on the toilet when marking the place that is the most comfortable and effective for you.

Instead of fiddly hooks for towels, in the bathroom we have large rings that make it easier with impaired dexterity in one's fingers.

The counter top in the kitchen has a small ridge of 1/2 cm around it to stop things rolling off onto the floor.

The runners of the patio doors are sunk into the floor that open leading out into the garden, making a flat as possible surface for easy wheelchair access.

Light switches have naturally been lowered, but also extra switches added so that a corridor can be lit from either end, and likewise the light turned off, no matter which end one is standing.

These are just some of the features that make a huge difference, however small they may appear. There are many more, but if there is anything in particular that you would like to ask about - please feel free to write to me and I would be happy to answer you.

Wrong impression - January 18th 2013

We live in a rural area and have the pleasure of being surrounded by fields, orchards and a forest. I wanted to check there were no future plans for development or perish the thought, high rise apartment buildings going up behind us, so I visited the local building planning office. I asked a lady at the front desk and she told me I would have to submit my request in writing and wait to be invited to a committee that sits once every two weeks to discuss such matters. Having hoped for immediate information, my face dropped, and looking despondent, leaned on her desk and said "my husband wont be pleased if I go home without an answer!" What I had forgotten, was that both my arms were badly bruised (one bruises easily with Gaucher disease) and I literally looked as if I had been beaten up. The lady looked me up and down and told me to wait a moment, whilst she hurried into the back office where I could see her talking to another woman sitting at a desk. The two of them simultaneously looked over in my direction, and then continued in their hushed tones. The lady returned to the counter and told me that they didn't usually give out information informally, but she was concerned for me and would make an exception. As she spoke, I noticed her glancing at my arms and it suddenly occurred to me, she had assumed I had taken a beating. Little did she know that Gaucher disease was solely responsible for my colourful bruises, and most definitely not my gentle, loving darling husband. I didn't say anything, leaving the office armed with the information, and thinking for once, having Gaucher had unwittingly given me an advantage, although had left my husband with a questionable reputation! I arrived home and told my husband what had happened, to which he was mortified, and told me out rightly that he wasn't going to set foot in that office if they were under the impression that I was a beaten wife. I can't say I blame him! However, we are now safe with the knowledge that the fields behind us will stay agricultural land.

Rigidity - January 20th 2013

Waking in the morning, for many Parkinson's patients is an agonising experience, for during the night, the body becomes stiff and rigid, therefore moving in bed or attempting to get up is very difficult. I almost feel like the tin man in The Wizard of Oz, creaking and needing oiled joints to loosen the rigidity. If only it were that easy! It's hard to find a comfortable position in bed, and should I want to change positions, it's painful moving. Once up and out of bed, after a while I loosen up a little, but my balance is poor, and have fallen several times recently. Thankfully each time I've been lucky and had a soft landing. Moving house recently has really taken it out of me, and my energy levels are low. Some days I feel as if I am running on an empty tank and in slow motion. I used to be so organised and quick, a master of multi tasking. Now things are very different, and I'm lucky if I manage to complete something at all, before getting distracted or losing focus on what I am doing. But all this comes with the territory - Parkinson's has many symptoms and stages, and each patient is a different story, so I was surprised to read that there are five stages of Parkinson's:

Symptoms in one side of the body, poor posture, shaking and tremors

Affecting both sides of the body, daily tasks difficult to perform.

Balance and impairment - mild to moderate slow movement.

Severe disability - balance and movement.

Wheelchair bound - not able to take care of oneself.

I don't know how accurate this is, and upon what data it is based, since every patient's symptoms vary slightly, and no two patients experience the same things. How these five stages were determined, I'm not entirely sure.

Pain is draining - January 21st 2013

I am extremely tired and everything takes a great deal of effort these days. Even concentrating or focusing on a simple task, takes perseverance and energy. Waking in the morning, I am immediately made aware of the pain that racks my body, and the rigidity making it very hard to move, let alone get out of bed. Gaucher and Parkinson's; a worse combination would probably be hard to find. Pain from both diseases is extremely tiring and wearing. I don't know how much longer I can keep up writing and all the other activities that sprang forth when my book "Parkinson's, shaken, not stirred" was published in 2011. It has been an eventful ride and I have made contact with some amazing people - all like minded, with one common dream in mind; a cure for Parkinson's. Having been totally pre-occupied with moving house, I haven't had my hair cut for some months now. With no mirrors yet in our house, it wasn't until my husband hung a full length mirror in the bedroom yesterday; I got a shock at what I look like. My thick hair had grown into a bush, resembling someone who had been pulled through a hedge backwards. I immediately phoned our hairdresser, and thankfully he managed to fit me in. Having my hair washed at the hairdresser is so much more comfortable than me struggling at home. To hold my arms up and effectively wash my hair and rinse out thoroughly the shampoo and conditioner is hard to do, and much easier with someone's assistance. I have little strength in my arms and hands and even my fingers are swollen and painful. Any way enough of me griping; I have much to be grateful for and refuse to let ill health get the better of me, and maintain my positive attitude.

The best support - January 22nd 2013

Very good friends came over last night, armed with dinner, we had a pot luck meal together and with their cheery wonderful personalities the evening was extremely enjoyable. I thought I would make a desert for our American friends that I knew they had never had before. The British climate calls for hot comforting puddings that are often quite heavy, but due to their origins, where ingredients were simple and counting calories wasn't a consideration in those days, we now only indulge in these deserts on a rare occasion. As I placed the steaming desert on the table and told our friends it was called "Spotted Dick", I knew this would be met with wails of laughter. I had to assure them it was quite safe to eat, and was not some kind of venereal disease! Curiosity got the better of them, and they were soon tucking into a true classic British desert, in-between much amusement and many puns. The desert may not have been quite their cup of tea, but it made for an interesting and hilarious end to a meal.

Having family or good friends who know how to give positive practical help is valued, and appreciated more than I can put into words. Again I say thank you to all who have helped us with moving house. Even a phone call, or an e-mail, just letting someone know you are thinking of them is a form of support.

Memory and repetition - January 23rd 2013

Not all Parkinson's patients will experience cognitive difficulties, but as the disease progresses, a fairly large percentage have problems with memory and general mental ability. I was diagnosed with Parkinson's almost six years ago, and my memory is affected to some degree. I know that I often repeat myself, having forgotten I've already asked a question. This understandably becomes very tiresome and frustrating to say the least for my husband and daughter. Sometimes I must really try their patience, and who can blame them for getting annoyed? I would probably be equally irritated if I were in their shoes. However, understanding and tolerance should be shown, for it's very hurtful and demeaning to be told flatly "you've asked that 3 times already!" Apart from making me feel bad, I think twice about speaking now, as I'm afraid of repeating myself. Patients can often retreat within themselves, feeling embarrassed, and end up not talking at all. This is a bad scenario, for having been a chatter box my entire life, I have become much less talkative. Although hearing someone repeat themselves again and again must be enough to drive anyone up the wall; just stop and think a moment of how the person who has Parkinson's must be feeling. I'm always nervous of forgetting someone's name, not knowing if I'm repeating myself; makes me very hesitant and self conscious. To be totally honest; not remembering if I've said something or asked a question already and forgotten the answer, makes me feel like an idiot. I can assure you, I don't repeat myself for the fun of it, or get some deranged amusement from driving everyone crazy. Please show empathy and as much patience as you can muster when in the company of someone with Parkinson's.

Port-a-Cath - January 24th 2013

The Gaucher medication is administered by infusion, so 15 years ago I had a Port-a-Cath surgically inserted under the skin in my chest; a one way valve for patients receiving frequent infusions. At the time, the optimum dosage of enzyme replacement therapy for Gaucher patients was given once a week, and to save the veins, a Port-a-Cath was recommended. To enable "home treatment" my husband was taught in the hospital how to insert the special needle into a 2 mm diameter circle of silicon, by merely feeling with his forefinger and thumb. This required not only guts to stick a needle into me, but great dexterity, for 2 mm is a pretty small area. A fair amount of pressure is required to puncture the skin and the silicon, until the needle touches the back of the titanium vessel. A 25 cm long tube is attached from this vessel, winding around the collar bone and down to one of the main arteries leading to the heart, which ensures the medication is pumped efficiently and quickly throughout the system. The Port-a-Cath was implanted under full anaesthetic, but 15 years later when it had come to the end of it's "shelf life", it was removed in the Day Clinic under local anaesthetic. My husband, who is not in the least bit squeamish wanted to watch the procedure, but the doctor refused and made him stand behind a curtain, whist the surgeon and nurse struggled to extricate this device which had embedded itself into my chest muscles over the years. After quite a struggle, the Port-a-Cath was dislodged and removed. My husband had stood for 40 minutes behind the curtain, watching the entire procedure in the reflection of a shiny cabinet that was positioned just right! My husband doesn't miss a thing! Today I have an infusion for Gaucher once every two weeks and a nurse is sent to our house to insert a regular i.v. needle into my arm.

It's the weekend - January 25th 2013

We have been in our new home for 25 days, and so far I haven't fallen once, which has to be a good sign! However, I have "fallen" in love with this house. We feel very much at home, and all our careful planning seems to have paid off, making our house a safe, disabled friendly, low maintenance home.

My husband takes out our dog every morning for a walk and has met a few of our new neighbours. Whilst out walking the other morning, I thought they'd been gone an unusually long time, when they suddenly appeared on the doorstep with a neighbour and his dog in tow. I've always said that walking a dog is an ice breaker, a canine ambassador of sorts who introduces you effortlessly to other people walking their dogs. It was great to meet a new neighbour, and within minutes discovering someone in their family has Parkinson's. With millions of Parkinson's patients around the world, unfortunately you don't have to look far to find another family with someone who is a fellow sufferer.

I can hardly believe it is Friday again - and wonder where the last week vanished to. However quickly the days pass, I am pleased to say that the cardboard boxes are also vanishing just as quick. I don't think I ever want to see a packing box or a role of brown tape again in my life!

I wish you all a very good weekend, and hope that those of you who are snowed in, stay warm and dry.

A new lease on life - January 27th 2013

For several months leading up to moving, emotionally I was at an all time low, for we were living in the most difficult and uncomfortable circumstances. Although exhausted from the upheaval and recent move, this house has literally given me a new lease on life, and living in an environment that makes me and my family feel good, couldn't have come at a better time. Even the dog appears happier! Often one sees on television home improvement programmes, where a team of experts change the appearance of a home, and wow us with inventive ideas and colour schemes. I was very concerned to create an atmosphere that would ooze tranquility and calm, using warm natural colours. It's amazing how simply colour can affect one's mood, and although there are still things to finish, a few boxes left to unpack; we are making headway and it is wonderful to be here.

It takes me so long to do just simple things, and I tire easily, so you'll have to forgive me for not writing more this morning.

Registering pain - January 28th 2013

Well I just can't seem to stay away from the dentist. Whilst eating supper the other night, a piece of tooth sheared off, leaving a sharp edge and when I looked in the mirror, only half a tooth was still in tact. Making an appointment with the dentist, already suspecting that a crown might be the only solution, I had no idea a dear friend had also done something similar and had an appointment a few hours earlier for the same day. The dental surgery know we are good friends, and receiving a cancellation from another patient, they kindly brought our two appointments together. To be honest, going to the dentist is no one's first choice of things to do, but knowing one is going to meet a good friend is certainly an incentive. We chatted away in the waiting room and then after we had both been seen to, we went to café. Unfortunately having had work done, we opted for only a drink, but it was definitely the best dental appointment ever that turned into a marvellous morning. What was interesting, was the fact that I felt no pain whilst the dentist worked on my tooth preparing it for a crown. I had purposely not taken any pain killers that morning so that he could diagnose clearly what was wrong. My leg was very painful whilst laying in the dentist chair, and somehow the pain of my tooth was not registering, as my body seemed to be concentrating on the pain in my leg. I don't know if anyone else has experienced this, but I would be interested to hear. The main types of pain usually associated with Parkinson's are: muscle cramps and dystonia, radicular pain, dyskinetic pain, restless legs syndrome, pain in mouth and jaw, headaches, akinetic crisis and pain.

Take medications on time - January 29th 2013

It's all very well having an alarm on my mobile phone, to remind me to take my Parkinson's medications, but often has been the case, I hear the alarm, turn it off, then promptly get distracted by something, and end up forgetting to take my pill. Missing PD medications or taking them late, causes immediate consequences, and it doesn't take very long before I start to feel the effects and realise I've forgotten to take a pill. I'm sure any fellow sufferer can empathize. Unlike Gaucher treatment, which is administered by infusion once every two weeks; it works in an entirely different way, and having the enzyme replacement therapy a day or two early or late does not affect the patient. But Parkinson's medications are an entirely different thing, and you can't afford to forget to take pills or take too many. Timing with PD medications is everything, ensuring enough space between doses, and eating, especially protein. I carry spare Dopamine pills with me at all times, just in case I am delayed in getting home. Whenever we travel, I keep my medications in my hand luggage, just in case my suitcase decides to vacation somewhere else. I can always buy a new toothbrush, and a few new clothes; who wouldn't mind a little shopping therapy, but trying to get the correct Parkinson's medications in a foreign country would be pretty difficult. I never leave renewing prescriptions till the last minute, as running out of pills at home, although undoubtedly easier than abroad, causes unnecessary last minute panic, that we could all do without. So much of my life and this disease I have no control over, so I do my best to manage the areas I can control.

Hallucinations - January 30th 2013

Regrettably, I have experienced first hand stigma and ignorance regarding Parkinson's, and even found some patients who are unwilling to talk about certain symptoms of the disease and side effects of medications, for fear of alienation and shame. To put Parkinson's in a nut shell, (I dearly wish I could) and like a walnut just crush it to pieces, but sadly we know that's not going to happen! Parkinson's and many neurological diseases, to explain in simple layman's terms, is basically a malfunction where the brain is not making enough of a particular chemical that our body's delicate balance requires to function in a normal and healthy fashion. Just like millions of women who give birth, suddenly their hormones are thrown awry, all due to a temporary imbalance. Parkinson's unfortunately isn't temporary, but neither is it contagious, nor poses a threat to others; mostly the disease is grossly misunderstood. Education and information are my only tools to try and change the mindset of those who are ill informed.

The mere mention of hallucinations, sends most running in the opposite direction, taking any empathy or desire to remain in your company with them. Approximately 8% of Parkinson's patients experience hallucinations, but I doubt this figure is correct, as patients are generally not forthcoming about this particular topic to their families or doctors. The hallucinations may last only a matter of seconds, and can vary from the sensation of the presence of a person, a sideways passage (often of an animal) or auditory hallucinations. Experiencing these is admittedly a little unnerving, but it's important to realise what they are; visual tricks played by the brain that involves the body's senses. It is crucial to understand that hallucinations do not deem a person to be "crazy" or "mad", but are merely a manifestation of the disease that affects visual perception.

Excellent aid - January 31st 2013

I have great difficulty in getting in and out of a car. I have to park my behind on the seat first and then swivel my legs around into the car. I think in my case, this is mostly due to the Gaucher disease rather than the Parkinson's. Nevertheless, it is a common problem for many. Sherryl from the Young@Park always finds interesting information and shares it with the Parkinson's community. I wrote an article for The Huffington Post recently about problems choosing a car with a boot large enough to hold a standard wheelchair, so wanted to tell you of Sherryl's recent report of an incredibly useful gadget to help getting in and out of a car. It always amazes me of how people come up with these new inventions. Whenever I see something like this, I always think to myself, "why didn't I think of that?" - I'm sure we all do the same thing! Sometimes something so simple and small can really make a difference. Take a look at the site about "Handybar Automobility Solution Kit.

I remember when I first started using crutches to walk around, I suddenly thought of a gadget to attach them to a table, as they always seemed to fall down or get in the way when we were out at a café. As we sat there, I even went as far as to draw a sketch of my idea on a paper napkin and my husband and I came up with a really good catchy name for it. As soon as we got home, we looked on the Internet to see if anything like this existed, and lo and behold, almost identical to the gadget I had drawn appeared before our eyes on the computer screen. Someone else had had the same idea, and beaten me to it. What a waste of a good paper napkin!

A day like no other - February 1st 2013

Our dog is not allowed in the bedroom and normally obediently refrains from entering. This morning however, I spotted her looking very guilty as she skulked out of our bathroom hastily chewing and swallowing the last remaining evidence of what she had found. Taking a quick look at the white foam dripping from her chin, and evidence of an empty soap dish laying on the floor, I didn't need the help of Sherlock Holmes to work out that our dog had indeed eaten a bar of soap! Why she had eaten the soap; who knows? I have a fair amount of experience with dogs, but have never heard of a dog eating soap! Before I had a chance to contemplate if I should telephone the vet, I was distracted by a bright bolt of lighting that lit up the entire room. The heavens opened and a huge clap of thunder accompanied the teaming rain that came down in a torrent, turning the garden into a muddy mess, which was immediately followed by an electricity cut. I hadn't opened the electric blinds since getting out of bed, and the house was more or less in darkness; with no electricity I was now unable to open the blinds to let the daylight in. So there I sat in the darkness, listening to the storm outside, huddled next to our soap eating dog, wondering how I was going to receive guests that were due to arrive in three hours! This was how my day started. Thankfully the electricity resumed after an hour and the rain began to let up a little. The dog looked fine, so I didn't bother calling the vet, and somehow I managed to get everything ready in time for my guests whose company we thoroughly enjoyed. I hope tomorrow morning will be less eventful. Thank goodness it's the weekend!

No regrets - February 3rd 2013

Being able to say you have no regrets, and really mean it is indeed an achievement. I'm always saying "live life to the full, don't put off tomorrow what you can do today". Material things matter not, it is what you do with your life and the time you spend with loved ones, whether they be family or friends that really counts. Make wonderful memories that will keep you warm and make you smile as the years pass. I don't want to ever be in the position of looking back and thinking to myself "what if?". Even when the odds seem against me, this does not deter me from making the most out of every moment, and enjoying life.

Getting together with a fellow sufferer; having much in common, is of great support and comfort to us both. She told me of someone in their nineties who had said something that struck a note: "my memories have become my enemies". I have never heard anyone say this before, and although found it sad that one should view their life's memories in this negative way, I did understand that the lady was referring to all the things she could no longer do, and living so long, had no doubt lost many family and friends over the years; a painful experience for anyone.

We all have baggage, that's part of life, and some of it is not so good, but you can't change the past and so I've found it's far better to concentrate on the present. Life can be hard and far too short to waste. Make the most out of what you have, and live in the moment.

Understanding Parkinson's - February 4th 2013

I was very happy to recently get together for lunch with a super lady, who like myself, suffers from Young-on-set Parkinson's. Her charming parents also joined us for lunch, along with my husband and daughter. Talking with a fellow sufferer, is completely different from talking to anyone else. As soon as I began describing a situation or some difficulty I have, I knew she would immediately understand. I barely had to finish describing what I was feeling or thinking, as she too goes through the same things, having similar thoughts. We spoke about being at a function, a party or wedding, and how it is no longer a pleasant occasion, due to the difficulties compounded by having Parkinson's. Just sitting at a table with a large group of people, trying to follow several conversations that are going on at the same time is impossible. One on one conversations are manageable, but put me in a crowded room full of people chatting away, and I feel most uncomfortable, overwhelmed and unable to handle the situation. If you don't have Parkinson's, you might find this difficult to grasp, but if you are a fellow sufferer, you will no doubt understand completely. Most people don't realise how many unpleasant symptoms and side effects that this rotten disease unleashes upon the unfortunate patient diagnosed with Parkinson's. In my latest article in The Huffington Post, I wrote about the symptoms, but these were merely some of the more common ones. There are many more - but somehow I didn't have the heart (nor the space) to write about them all. It appears that there is a wide range from mild to severe cases; whilst some patients have few symptoms and manage to live a fairly normal life for many years, there are others that suffer a more aggressive debilitating form of Parkinson's and whose lives are affected very much.

Made to measure shower bench - February 5th 2013

Having a special built-in bench in our shower, I was asked by our builder what size the seat had to be. The height was easy to work out, and able to immediately give him the measurement, but he also needed to know how deep to make the seat. Ladies; have you ever put on a pair of trousers and asked your husband "do these make my butt look big?" Of course, a man never knows if to answer truthfully and bear the consequences, or if he is supposed to tactfully lie; left totally confused and clueless as to what is expected of him. Well you can imagine my surprise at the builder asking such a personal question, not expecting to be asked how big my bottom is and what size seat I would require, but upon reflection, he was just doing his job. After having a wonderful shower yesterday, sitting comfortably on my little bench, that has been made custom made especially for me, I now understand the importance of knowing the size of my rear-end! The bench looks tiny, so next time I feel I look large in a piece of clothing, instead of asking that dreaded question of my husband, much to his relief, all I need do is go and look at my shower bench to be reassured. They say that size doesn't count, but sometimes it does, so when I see my tiny shower bench it makes me feel so much better!

Soap story - February 6th 2013

Well my dear canine companion has been at it again. I found the soap dish from our bathroom on her blanket in the lounge. She had sneakily pinched it from our bathroom and was trying to stash it away without anyone noticing. At least this time there was no soap in it, so she had not ingested yet another bar of soap. As I showed her the empty soap dish and scolded her, she held her head down and tail between her legs, she clearly knew she'd been a "bad dog" and needed to clean up her act (sorry - I couldn't resist the pun!) I attempted to figure out if she was trying to tell us something, but for the life of me I can't think what it could be. Is she telling us she wants a bath? or that she's peckish and in need of a snack, or maybe she barked something offensive and punishing herself, washed her mouth out with soap and water! The latter I find hardly plausible. If only she could talk - it would make things so much easier. If anyone out there also has a dog who insists on eating soap, please do write and let me know your thoughts, for we are mystified and can' t work out this sudden odd behaviour.

Rest - February 7th 2013

Knowing when to push yourself and when to take a rest isn't always easy to decide. I believe it is my fighting spirit and desire to do as much as I can that keeps me going. However, there are occasions when I'm exhausted, worn to a nub as my friend would say, and simply need to sit or lay down to rest. It's not in my nature to lay in bed, and therefore I find it difficult to take an afternoon nap when my body is calling for one. Being able to pace one's activities is important, and I'm far better at telling others to do this, than follow my own advice. Sometimes I get carried away, wanting to finish whatever it is I am doing, so that I will feel some sense of accomplishment, but end up pushing myself too far. Then with my family's words of "I told you so" ringing in my ears, I end up paying the consequences of my actions. I don't push myself to the limits out of stupidity or arrogance, but out of frustration at what I am no longer able to achieve. Adjusting life to my present abilities is extremely hard, and with much reluctance on my part, I have to make changes and allowances. Mornings are the best time for me, but by lunch time, I am already past my best, like a food item that has passed its "sell by date". As the afternoon and evening approach, my energy level and abilities decline, and by 10pm I can hear my pillow calling out my name. It's a fine line between doing all you can and keeping as active as possible without over doing things and making the situation worse.

Caregiver burnout - February 8th 2013

Unlike some diseases, a Parkinson's patient can live a long life, therefore the prospect of the caregiver taking care of a loved one for many years to come may be overwhelming. It is therefore vital that the long term caregiver doesn't neglect his/her own health, avoiding regular medical appointments or tests. Having a hobby or physical activity is a great outlet for the caregiver. Family and friends can help by thinking of inviting the caregiver to events or social gatherings. Just because a person with Parkinson's may not be able to partake in a particular activity, don't forget about the needs of the caregiver who is able and may enjoy participating. Chronic illness can cause the relationship in a marriage to change considerably, and instead of being an equal partnership - the balance unquestionably shifts. The one who takes on the role of caregiver has increased responsibilities than the spouse who is ill, and is often left feeling guilty and inadequate; more like a "patient" than one half of a team/couple. Keeping family and friends living long distance in the picture is important too, and they can help in various ways despite being far away. Even a telephone call once a week to ask how the caregiver is holding up, sending a card, e-mail or parcel filled with the caregiver's favourite "goodies" can brighten his/her day, thereby letting them know they are thought about and appreciated. Lightening the load of the caregiver to avoid "burnout" just requires a little imagination and thought from family and friends. Small gestures can bring great comfort to a caregiver who may look like they are holding it together on the outside, but underneath that cool "got it under control" exterior, there could be a drained individual in distress. Pay attention and do what you can to help. Don't wait to be asked, or leave it until it's too late.

Depression untreated - February 10th 2013

A vast number of people suffering Parkinson's experience depression, but many go unrecognised and untreated. Due to the masking effect (expressionless face), fatigue and sleeping problems that are all part of Parkinson's, it is often very difficult to differentiate between the regular symptoms of the disease and that of depression. Diagnosing depression requires someone familiar with Parkinson's who has experience in this particular field. Depression if not treated, can actually make the condition worse. Living with a chronic disease (or in my case two diseases!) can result in social isolation, so I find myself in a catch 22 situation. I have very little energy and my mobility compromised makes it difficult to socialise, yet as human beings we all need interaction with others to keep a healthy emotional outlook on life. Parkinson's disease, by its very nature affects chemicals in the brain, and it is these very chemicals that are responsible for our emotional feelings. The shame and stigma attached to being depressed and requiring treatment should be shown the door. It is not a defect in one's character, but a part of the disease itself, and therefore should be treated with the dignity afforded all the other unpleasant symptoms. How sad that some people will openly talk about resting tremors or shuffling as they walk, but bring the word "depression" into the conversation, and I feel like we're back in the middle ages. Let's move forward and tackle these issues head on. I think its about time, don't you?

Guilt \- February 11th 2013

Guilt like a festering wound can gnaw away at one's conscience and drive you to distraction. Although logically I know I didn't choose nor am I responsible for having Parkinson's, as nonsensical as it may sound I still feel guilty. It isn't easy when faced with a life changing situation that automatically effects those you love, in particular one's spouse. Having a disease like Parkinson's is the last thing I would wish for, and my dearest husband doesn't deserve this unfair turmoil that has descended upon us. If I could give him the sun and the moon I would, but right now, I would settle for a cure to a disease that has destroyed millions of lives around the world. "Parkinson's" - how I hate this word - a name that once belonged to a doctor who was the first to record his findings of a strange new disease he called "Shaking Palsy". Little did he know, he would go down in medical history and millions would utter his name in horror when diagnosed. He probably did not realise the magnitude of what he had stumbled upon and barely understood in 1817, and how many would suffer in the years to come. As logical as I can be, I still feel responsible and guilty for my family's situation. It's human nature to take blame in such a scenario, however absurd this may seem, when I see the necessary change in lifestyle, plans we'd made for the future that are no longer viable, financial burden that besets any family stricken with chronic illness, along with the on-going physical and emotional difficulties that are a daily occurrence. How could one not feel guilty with all this upon one's shoulders?

Dragging one's feet - February 12th 2013

Talking with a fellow sufferer is totally different from talking to anyone else. Recently whilst chatting with a friend, both understanding each other as we had a good moan about the various annoying symptoms and scenarios we find ourselves in thanks to Parkinson's, she gave me much food for thought. I had to share with you, as anyone suffering Parkinson's could empathise how she mentioned about being told to pick her feet up when walking. I immediately remembered my neurologist and the physiotherapist telling me the same thing. But this is far easier said than done, as anyone with Parkinson's will confirm, lifting one's feet up instead of shuffling is quite difficult and takes great effort and concentration. I know that the best footwear is an orthopaedic sport shoe with flexibility, support and a non slip sole, yet the laces present a frustrating struggle, where as my orthopaedic mules slip on and off with ease but are not the ideal footwear for a Parkinson's patient. My family have become accustomed to hearing my shuffling house slippers as I move around at home. At the beginning they found it quite annoying, but I think they are used to it now, and like a cat that wears a bell, allowing you to always know where it is in the house, my family always know exactly where I am - all they need do is listen for the shuffling feet!

Depth perception - February 13th 2013

Parkinson's effects every facet of one's well being, including eyesight. My eyesight is quite poor now, but in particular I have noticed a change regarding depth perception. When we moved into our new home, I was looking forward to putting away all the kitchen utensils, dishes, pots and pans that I have acquired over the years. I had planned where I thought everything should go, but somehow, despite the many cupboards, it wouldn't all fit in. I couldn't believe everything fitted in my old kitchen with no problem, and here in my beautiful new kitchen with lots of cupboard space and yet something was terribly wrong. My husband who quite frankly has more than enough to do, without needing to get involved in the kitchen which is most definitely "my area" decided to step in. He could clearly see that I was having great difficulty so gently took over and in no time at all, had completely re-arranged the contents of the cupboards, fitting everything in with space to spare, and in a manner that is easy and logical. I was delighted with the end result and thrilled that he could do what I had not managed to, but at the same time, I was deeply upset as I realised, yet another change had taken place that I had hardly noticed. My lack of depth perception means I can no longer judge a space and see what fits in it, and a simple job which should have been a pleasurable one, left me feeling sad at my failing abilities. Parkinson's is a perpetual thief who seems to keep coming back and stealing just a little bit more.

Valentine's day - February 14th 2013

The 14th February is Valentine's Day, celebrated in many countries with the customary giving of flowers, heart shaped chocolates and cards. Spending most of my time at home, I grab any excuse or reason for a celebration. I'll be making a special dinner tonight and I think we'll open a bottle of wine, or maybe have some cocktails (shaken not stirred of course!). There is an adorable film called "I hate Valentine's Day" that came out in 2009 starring John Corbett and Nia Vardalos. If you haven't seen it, it's well worth watching. So today I'm not going to think about Parkinson's and I wont let it ruin my day. I am pushing it out the door, like an unwelcome relative that came to stay overnight, but ended up moving in permanently. I actually know of someone's grandma who came to visit for the weekend and ended up staying 17 years! However she was a lovely lady and welcomed into the family with open arms. Wherever you are, and whatever you do today, I hope you have a lovely time should you decide to revel in a little romance.

Blocking out disturbances - February 15th 2013

With many workers in and out of our house finishing the last bits and pieces, touching up paintwork, fixing small faults, I find the constant noise of them shouting at each other grates terribly on my nerves. Normally I cannot tolerate loud music, but desperate to drown out the disturbing sounds of workmen shouting, I put on Phil Collins - full volume - and it worked a treat. Unable to hear the men at all, I could ignore the fact that there were workmen everywhere. I am sure they must have thought this strange English woman who shuffles around the house must be hard of hearing. Little did they know that I was drowning out their voices. I'd rather listen to Phil Collins any day! I did try to sing along, but my voice has little power left, and I must have sounded like the cat that unfortunately entered our garden at his own peril and ended up being "played with" by our over enthusiastic dog! I have also found that listening to loud music, preferably with a good strong beat, (nothing soft like a lullaby) works at night too. If I've trouble sleeping due to Parkinson's and especially when I have unpleasant internal tremors, listening with earphones to loud rock music, literally makes my brain concentrate on something else, easing the symptoms considerably. My husband is delighted at this new found solution as he loves listening to music played loud. I'm not sure that the next door neighbours will be quite so pleased. I wish you all a wonderful weekend.

Take back your life - February 17th 2013

If you are letting Parkinson's rule the day, take hold of your life and get back in the driving seat; control what you can and make necessary changes in your lifestyle for the best quality of life possible. Don't let Parkinson's get the better of you. Gather your strength and fight tooth and nail if you have to. It is easy to slip under, becoming lethargic and surrender to this unrelenting disease, but it takes great determination and a fighting spirit to keep going, staying positive and never giving up hope. It's an uphill battle most days for Parkinson's sufferers along with their caregivers. I am no different from you. I have good days and bad days, I have dreams and I have fears; we all do. I have been writing a daily blog since September 2011 with the aim of sharing my thoughts and experiences as I journey forward in life, speaking honestly, I hope I have given you food for thought. There are many official sites on the Internet written by doctors or scientists revealing a fortune of valuable pertinent information. However educational these sites are, they have been written by those studying or working with Parkinson's but don't actually suffer from this disease. I write in a straight forward raw manner from the patient's perspective. Only a Parkinson's sufferer can truly understand another, and only a caregiver can totally empathise with other carers. I've had Parkinson's for six years now, and my body is tired. I'm not talking about the kind of tired where a good night's sleep will suffice; I'm talking of total exhaustion that makes one wonder how much more a one can take; I can barely move my body in the mornings from the pain and rigidity. Yet I force myself to get up and continue to write. People from all around the world are reading my poetry, my blog and articles, so it is in fact you, my readers, I have to thank, for you give me reason to keep writing.

What triggers Parkinson's? - February 18th 2013

After having hip surgery six years ago, I soon began to feel shaking in my left leg, and it took just three months to confirm the diagnosis of Parkinson's. Other symptoms followed quickly, and today I am not in the best of health. Having heard from many other patients, there seems to be a common thread amongst some Parkinson's sufferers. Many have similar stories to my own, having had surgery, some even hip surgery in particular, and having Parkinson's rear its ugly head soon after. This brings to question, is it the shock to the system of the surgery itself or the anaesthetic that "triggers" the Parkinson's? I don't know if any research has been done regarding this idea. I'm not saying for one moment that I wouldn't have got Parkinson's had I not had the hip surgery, for even without the surgery, I am sure that Parkinson's would have arrived on the scene at some point, just maybe a little later in my life. I would be interested to hear from any other patients who have similar stories, or from anyone who is doing research on this specific topic.

Caregiver Survival - February 19th 2013

Receiving news of being diagnosed with Parkinson's is earth-shattering and can feel like the end of the world. Initially the problem may appear bigger than anyone could possibly manage to get their heads around. Pushing away the reality of the prognosis, fighting against the diagnosis and all that follows does not help. A caregiver who sets his/her mind to make the best out of the circumstances and does whatever is possible to help the situation, is not only helping the Parkinson's sufferer, but is also helping him/herself cope better. By keeping a positive attitude, instead of wallowing in the misfortune of having married someone who has suddenly been diagnosed with Parkinson's, is in fact self preservation for the carer. However, if a caregiver harbours bitter feelings, remains angry, disappointed at what life has dealt out and continually feels let down; although totally understandable, this does not help, but simply exacerbates the problem and causes resentment between husband and wife. Therefore finding a different route, and a way of coping, by working closely as a team, lifting each other's spirits, staying strong for one another, giving comfort and remaining supportive - the outcome is far more rewarding for both sufferer and caregiver.

Masking- February 20th 2013

"Parkinson's Masking" is the term used when a person has an expressionless face, hardly blinking, turning one's head to look instead of just the eyes. Not everyone with Parkinson's will encounter masking. Make sure that your spouse/partner, family and friends are aware of this symptom. Usually I can feel when my face starts to "freeze", but on occasion I need someone to tell me. All small expressions, raising an eyebrow, a slight grin or wink no longer show on my face, but if someone makes me laugh really hard, then you'll see my smile and laugh. Most of the time my face is expressionless, and this is very confusing and disconcerting to those who don't understand. There are exercises one can do, by contorting one's face into exaggerated stretching movements, which as you can well imagine make one look extremely funny, so probably best done when alone unless you want to entertain the family! I didn't realise how much I rely on facial expression when conversing or simply listening to someone. It's terribly embarrassing to listen to a sad or serious subject being discussed and instead of having the appropriate expression, my face looks gormless and blank, as if I'm not following or understanding the conversation. Should you happen to be in the company of someone with Parkinson's and their face has a masked expression, don't assume they are unintelligent or disinterested in what you have to say. Behind the mask is the same fun, interesting smart person you once you knew.

Keeping a schedule - February 21st 2013

I am a creature of habit and like to adhere to some sort of routine, which is pretty difficult when no longer able to go out to work. A large percentage of the population having nine to five jobs, running children to school, or various extra curricular activities, participating in weekly social events keeps one on a regimented timetable and like clockwork you know what day of the week it is! Being housebound most of the time, the days can run into each other, therefore I find it's important to create some sort of schedule, giving me a framework that organises my time. There is so much in our lives we have no control over, that trying to maintain a schedule of sorts makes me feel I have a little influence in what goes on in my life however trivial it may sound. I try to do as much as I can, often overdoing things, but this is my nature. Keeping occupied when chronically ill is vitally important, and although completing a small task, may leave me exhausted, the feeling I've accomplished something more than makes up for this. Parkinson's may be keeping me hostage, but writing sets me free, hence much of my day is relegated to writing. Someone kindly gave us some lemons from their tree, so given lemons, instead of making lemonade, today I am going to attempt to make a lemon meringue pie, which is one of my family's old favourites, and a desert which I've not made in very long time. Wish me luck, and let's hope that I don't drop it on the floor, as I have a feeling my dog who will eat almost anything and flabbergasts us at her gastronomic tastes, might not be over enthusiastic at clearing up a sharp lemon desert!

Have a good day! February 22nd 2013

Have you ever noticed how some days just start off on the wrong foot, and go from bad to worse? You begin to wonder why you bothered getting up at all? Then there are other days, where you sail along and lady luck seems to be by your side. Yesterday was a good day, which is a rare occurrence for me, suffering two chronic diseases. It started off with a refund that arrived in the post from the gas company, a most unusual but welcome surprise - what better way to start a day! Usually the mail consists of bills to be paid, bank statements that make one cringe, and enough junk mail to have killed a dozen trees. Life is what you make it, and if you decide to have a bad time, trust me you will. If you awake in the morning with the preconceived idea that today is going to be hell - you wont be disappointed, for it's sure to be miserable. So when I wake up, I make a conscious decision that today is going to be good. Of course this doesn't always work, as having two chronic illnesses to contend with, sometimes no matter how determined I am, I cannot control what is happening to my body. However, staying as positive as I can, seeing the cup half full and counting my blessings does help. A series of small good events can create a chain reaction, and ultimately make for a positive and pleasant day, putting Parkinson's on the back boiler for a while. When you have a good day, it's almost contagious as automatically you affect those around you. If you smile at someone, they will inevitably smile back at you. If you greet a person warmly, it is usually reciprocated; this is human nature. Keeping cheerful and having a sense of humour, is beneficial for you, but even more so for those you love and who tirelessly stand by your side and take care of you. Have a good weekend; be infectious and make everyone around you smile and laugh, and if you have a minute or two before you leave your computer, take a look at my latest article on The Huffington Post.

A caregiver's experience - February 24th 2013

I have a special visitor staying with me at present; my sister-in-law, who has first hand experience at being a caregiver, as she looked after my brother who had Gaucher and Parkinson's, until he sadly passed away three years ago. Talking together, I was given insight of her experience and what she had been through. I was taken aback at something she said, that had not occurred to me, and with her permission I am sharing her perspective with you:

"It's all about attitude, as everything is in life. Make sure you reach out for help. Banish feelings of shame, guilt and anger, and get out there. Continue to be part of society. How a caregiver reacts is incredibly important, not only for the one who is ill, but for family and friends, as unconsciously they can become a role model for those around. It is important to set a good example for our children; the next generation. Everybody gets ill at some point in their life, obviously to different extents, and people will remember down the road a positive or negative approach of how a caregiver handled a particular situation. Family and friends want to help a happy person, but will become estranged from angry people. Anger and bitterness gets treated like a contagion, and puts distance between you and the very people you need, and who like wise need you."

There is much more I would like to write, as we talked for several hours, and many pertinent issues arose. I will write further on this topic tomorrow. Until then, I wish you a good day.

Mourning process February 25th 2013

Continuing from yesterday, these are some of the thoughts I wanted to share with you from the personal experience of a caregiver:

"As unpleasant a thought, it is natural and inevitable that one of a couple will go first. After losing a spouse/partner, how does one move forward? Everyone needs a reason to get out of bed in the morning. If hobbies and a social network are already in place, this makes the transition from being a couple to ending up single much easier. Plan and prepare for the day that will unavoidably come - especially those caring 24/7 for someone without any help, due to finances, guilt or shame.

The mourning process begins whilst still caring for a loved one, and should be acknowledged that whilst grieving the loss of the person, they should be remembered as they once were. We all go through this whether we have an illness or not, simply due to the ageing process that none of us can avoid. As the years pass, we become more fragile, no one escapes this progression. We protect ourselves, but we shouldn't give up and become insular; we need to fight it.

A caregiver doesn't realise it at the time, but is already going through a mourning process even though their loved one is still very much alive and present. Both go through this course which is only normal. However, find new joys and interests that both can share while still able; creating a new history together. This might not be the route you had planned, but a different one can be made, by organizing a variation of what you had once planned. Find a new place of contentment in whatever inspires you - giving you reason to preserve your spirits. Keep in touch with what you enjoy and don't give it up."

Losing weight - February 26th 2013

Difficulty in swallowing is a very unpleasant feeling and a symptom of Parkinson's that requires one to keep calm. I was advised when eating to take small bites and not to overload my fork. Choking on food or even one's saliva is a scary situation, and as soon as you let panic take over, naturally the whole episode becomes even worse. Eating foods that go down easily such as yoghurt, makes things easier. Having no sense of smell, and now my taste buds are also diminishing, hence food is less appetizing to me, and it's easy to skip meals. The less interested in food, due to no smell or taste not to mention the scary sensation of choking, all naturally promote weight loss. Losing weight at first might seem great, getting rid of excess kilos that with little work slip away effortlessly. You may initially feel good and fit into your clothes much better, but this is a dangerous line to cross. The stomach also becomes accustomed to receiving less food, and the loss of weight can escalate and get out of control, which can possibly lead to other complications. Pay attention that you eat and don't miss meals. Try and eat a well balanced meal, and keep an eye on your weight.

Appreciate what you have - February 27th 2013

I look about me, and despite being in pain most of the time, suffering the indignities that Parkinson's has so generously thrown my way, I feel content. When I say "generously" needless to say I mean this with great sarcasm. My dry British sense of humour still in tact has become an important tool for dealing with every day difficulties. As strange as this may sound, on a good day, I am able to put aside my illnesses and see the good things that have been bestowed upon me. With a loving attentive husband by my side, who deserves a medal for putting up with my health issues which disrupt our lives, and a daughter any mother would be proud of; what more could I ask for? Focusing on what's important, it's not hard to realise, I have everything I could ever want or need. That is everything except good health. But who knows maybe the day will come when Parkinson's can be extinguished from our lives, and the fiery intensity with which it devours the body and mind will be doused and put out for good. So, feeling like it's going to be a good day, I have decided for today I will see no PD, hear no PD or speak of PD.

Rare Disease Day - February 28th 2013

Show your support by simply watching and sharing the official video of Rare Disease Day to help bring about change. This is the 6th year of what has now become an annual event to raise public awareness, and although the idea is to inform and educate the general community, it's aims are also to bring these diseases to the forefront making politicians, researchers and professionals in the health field pay more attention.

Having a rare disease is very isolating for the patient and family. Often there are no support groups, and no cure or even treatment available. I guess the cruel reality is, that it is not cost effective to the pharmaceutical companies to spend millions on new medications for a rare disease that has a relatively small number of sufferers. I know only too well, for I was born with Gaucher disease, a genetic rare disorder that until 21 years ago, there was no treatment available at all. Thanks to a very special Professor, who made Gaucher disease his life's work, the first Gaucher clinic was opened, and a Gaucher Association was created to offer support and help to fellow sufferers and their families. My husband and I were part of this initial committee that helped found what today is a successful group. Our numbers were small to start with, but as word began to spread, other sufferers started to emerge out of the woodwork and today there are hundreds of patients and their families who have gained from the keen dedication of a marvellous Professor and the drive and determination of an amazing Chairlady who created the Association. Together in numbers we are strong and have a voice.

You have the power - March 1st 2013

Being diagnosed with any degenerative disease can turn one's life upside down. A metamorphous takes place, as life changes, so it's important to go with the flow. Don't fight it, or try going against the current. Let life's course take you, making the best out of a bad situation is vital to one's survival. Life without dreams and hope can be depressing. We have to get through with the belief that all will somehow be OK - both sufferer and caregiver staying positive.

Every caregiver needs a special place, a social activity or hobby that is purely theirs. Somewhere calm and pleasurable to re-charge emotionally and physically. The sufferer must acknowledge this need, allowing with a full heart, encouraging the caregiver to do so, in order that he or she remains strong and able to continue caring. If you are a caregiver; dream like you've never dreamt before - go for it. Make your own bucket list. No matter what your situation, no one is promised a perfect life; it is up to us to make our own happiness.

What do you do to cope and make it through each day? What changes have you made to keep some semblance of normality?

Grab your coffee and take a few minutes to read my latest article on The Huffington Post entitled "Don't let a disease define you".

Looking forward - March 3rd 2013

I'm not too sure who wrote the following quote: "Never let your past experiences harm your future. Your past can't be altered, and your future doesn't deserve the punishment."

I think there is some truth to this. Dwelling on painful past events is not constructive or productive; if anything it is detrimental to one progressing in life. My mother always used to say "no use crying over spilt milk" and as a child, hearing this over and over would irritate me no end. However, on hindsight, I guess she was right. One can't change the past, you can only do your best, move forward, gain experience along the way, and hopefully live a life with no regrets.

Many years ago a fortune teller knocked on our door selling small bunches of heather. Not believing in such things, I let the lady take my hand and watched her face as her smile faded and she looked into my face with great concern. "You will not end your days in this house" she told me, which of course came true as we've moved several times since. She then mentioned something about ill health and my head in a vague uneasy manner, to which I paid little attention to at the time. Upon reflection, I wonder if she really saw that I would be struck down with Parkinson's. Knowing one's future is definitely not a good idea, and it was probably just as well that I took little notice of her predictions. I have a feeling this unpretentious lady with her basket of heather was no "fortune cookie" but possibly authentic. Although I bought the bunch of heather, I wonder why she never knocked on our door again?

Not easy being a woman - March 4th 2013

The sweltering heat of the summer this year somehow appeared hotter than last year; it's the global warming and the ozone problem I keep telling myself. In reality there's a far more simple explanation: it's the menopause! However in the winter having an internal heat wave fire up like a furnace certainly keeps one warm on chilly days. Why did mother nature bless women with the addition of an extra little something special to keep us busy later on in life? As if wrinkles, laugh lines, hair disappearing and reappearing where least desired, and certain parts of our bodies surrendering to gravity in some kind of manic race to reach the floor is not enough; we are also subjected to hot flashes. You can always spot a woman in menopause, for she is wearing layers, so when her personal thermostat goes awry, a quick rendition of "the dance of the seven veils" is performed as layers of clothing are quickly shed. As for the beads of sweat that start dripping down one's face - how attractive is that? Standing in the post office, any woman fanning herself with the bills she is about to pay, or sticking her face in the open door of the freezer for some respite \- are all unmistakable give-away signs of a woman going through menopause. So how lucky am I to have Gaucher, Parkinson's and to top it off, the menopause? I think in my next life, I'm coming back as a man. Men seem to have a far easier time of it.

A Caregiver's perspective - March 5th 2013

Here are a few more thoughts from a caregiver:

"Nothing in life is static; everyone needs some assistance, support and help, taking each day at a time. It's probably best not to attempt looking at the entire picture, for it's too big and can be overwhelming even for the most well adjusted person. Feeling good about yourself is good for you and also beneficial for others. Bitterness begets bitterness, so endeavor to find joy each day, no matter what or how small. Stay true to yourself, whilst reaching out to others, and you will find compassion is returned to you - a sort of "pay it forward" scenario. There can be gratification in helping the one you love, if done with a willing and open heart. Try to remember and cling to the happy moments and wonderful memories; it will keep you in good staid later in life. Everyone has good times and hardships in life, so try to share with others to an extent what you are experiencing."

I appreciate the openness and frankness that has been shared, and I hope that seeing things from a caregiver's perspective will further understanding of this important role that many play around the world.

Tremendous Response - March 6th 2013

After writing a recent article for The Huffington Post, entitled "What triggers Parkinson's Disease" I received many e-mails from people all over the world, with similar stories to my own. Most of the accounts described some form of surgery or serious illness, that had caused hospitalisation, trauma to the body and emotional wellbeing, along with long recuperation (understandably with little physical activity whilst recovering) and then within a short period of time the first symptoms appearing, eventually leading to a diagnosis of Parkinson's. Firstly thank you to all those who took the time to write to me; and I hope that someone involved in Parkinson's research has picked up this idea / reasoning, or maybe there is already data being collected along these lines. It can't be purely co-incidence to find so many people with similar reports and thoughts on what triggers Parkinson's. If you have a similar story to tell and you would like to share it, please leave a comment below.

Hope - 7th March 2013

Call me hopeful, an optimist, or even over enthusiastic, but I truly believe somewhere out there, someone has found, or is in the process of discovering out how to stop Parkinson's from progressing. The missing link, a piece of the puzzle that would complete the picture, cannot be too far away. So much research, studies and money is being spent on finding a cure for Parkinson's which affects millions of people worldwide, maybe we are closer than we think. Why do I tirelessly keep writing? speaking at every given opportunity, advocating and campaigning? Because my future and yours depends on it. If we can all do our part, make as much noise as possible, generate awareness like never before, something has to come from this global effort. I dream of being cured of Parkinson's, and living a normal long life with my darling husband by my side. I want to be here and still able to walk when my daughter marries one day. I would love to experience for myself the joy I see others who take delight in becoming grandparents. To grow old with my husband and to be a burden on this family no more is my greatest wish. Why shouldn't wishes come true? Maybe it's about time this one did!

Take a look at some very interesting progress that the Albert Einstein College of Medicine regarding how the most common genetic mutations in familial Parkinson's disease damage brain cells.

Abuse of chronically ill children - March 8th 2013

A child who is chronically ill or disabled to some degree, weak and fragile, can easily fall victim to sexual abuse. An ill child is at high risk, for being so young, they don't understand what is happening, and often unable to communicate what is actually going on. What makes these children in particular fall prey to what can become constant ongoing abuse lasting years, is the mere fact that the child is cloistered within the family due to ill health, and dose not lead a normal life interacting with other children and sometimes missing many days of schooling. Despite the fact that a child in this situation may be in and out of hospital on a regular basis because of the disease or disability which is taken care of, doctors so concerned about the issue at hand, often miss or overlook the tell-tale signs of an abused child. Even the school may not pick up on any odd behaviour, putting any peculiarities down to the child's health issues. Whether a child is suffering a chronic disease or mental illness, their symptoms are all that anyone sees or is concerned with. As harsh as this may sound, it is easy to happen, and sadly a child may endure years of suffering, until finally the nightmare comes to an end. If you are a caregiver of a child who is unwell, pay attention, don't miss the little signs, or dismiss a strange story that your child may be trying to convey. More than often the perpetrator is someone in the family or close by who has constant and easy access to the child and who also horrifyingly has your trust!

Being a good friend - March 10th 2013

If you can count a number of friends on one hand you are lucky. True lasting friendships are not built overnight, and trust is earned over time. Loyalty, honesty and the ability to share completely, giving and taking is a two way street. A healthy relationship can stand the test of time; women in particular have a "sisterhood" of sorts to call upon, to celebrate good times together and be there when life smacks us in the face, and we take a fall. This is when a friend steps in by gently helping, reaching out with a caring hand. Being genuinely happy for a friend when they succeed or advance in life and accepting the changes they experience with an open heart, is real friendship. As we grow, mature, experiencing different things, it is not possible nor healthy to remain exactly the same person you were when young. It can be a test of character for those who resent changes, or may have been doing better at one stage and now that the tables are turned, you are making a success; changing the balance and a shift in the relationship with which they can't cope. This is a sad but common scenario. A friend who cannot grow and change with you is not a real friend in my eyes. I am fortunate to have a number of ladies whose friendship I treasure and hold dear, and despite having poor health, they continue to stand by as my life changes due to Parkinson's. Life is full of surprises and I am constantly amazed at who lets me down, and even more astonished on occasion at who steps up to the mark without hesitation. Life isn't easy, and relationships can be complicated, but wouldn't life be boring if we were all the same?

You're entitled to moan - March 11th 2013

You'll have to forgive me, but this morning I am having a good moan! I have officially given myself permission just for today, to complain. If any workmen are reading this blog, I beg your forgiveness for I'm sure that most are hard working, honest and take pride in their particular skilled profession. However this past week I have had the misfortune to come across some workmen who push one's patience to the furthest limits, working so slowly; I'm convinced a colony of snails would move at a faster pace. Not to mention the most unattractive view I have been subjected to. As soon as a worker bends down, I quickly avert my eyes - you know why of course! Is it some sort of unofficial but common uniform they all seem to wear? Yes, you've guessed what I'm talking about! The trousers that look like they're about to slip down at any given moment, revealing underpants that do not cover, hence revealing a part of one's anatomy that should not be on display! I have also noticed that apart from not being perturbed by their distasteful attire, clearly another requirement of being a workman is having good healthy lungs. I've been subjected to listening to some very loud heated shouting matches, and despite having all the windows and doors closed, I can still hear them outside. Yesterday I was near to losing it, and decided to drown out their presence with my MP3 player. Ear plugs firmly pushed in, I turned the volume up and before long felt much better, and unconsciously began to sing along with the music, as I'm sure most of us have done from time to time. I was suddenly made aware of my daughter standing by my side, telling me that she could hear my singing from upstairs with her bedroom door closed!!!! I had no idea I was singing that loud. Not being able to hold a note, my singing leaves much to be desired; is it any wonder that the workmen packed up early and went home!

Musical therapy - March 12th 2013
Music has a powerful effect on us with the ability to change our mood quickly from feeling bad to being in a good frame of mind. Music can lift our spirits, make us smile, and if we allow it, touch our very soul. On one of the many times I have been hospitalized , I remember with great pleasure how a man with a violin visited the ward I was in. He went into each room and played beautifully for the patients. I could hear him getting nearer and nearer my room, as the music drifted down the corridor, it got louder, until finally I was treated to a private concert of my very own. On another occasion a local children's choir came to the hospital and with great enthusiasm and beaming smiles they sang cheery songs to the patients in each ward. To have such a treat, whether it be music or singing, really brightens one's day and the monotony of being hospitalized. If you can sing or play a musical instrument, why not give a little of your free time at a local hospital. I can assure you, your efforts will be warmly received and welcomed. I would like to thank anyone who has voluntarily entertained patients in this manner which can bring such beneficial effects, giving pleasure and delight to those who are badly in need of a little diversion. Speaking as a patient, it was an enjoyable welcome interlude and enormously appreciated. If you'd like to see something very cool that an orchestra did recently, take a look at this Flashwaltz performed at a hospital.

Clenched jaw - March 13th 2013

When you are as "lucky" as I am, and have two major chronic diseases, it is difficult sometimes working out what symptoms and pains are associated to which disease. Many occasions in the past I have experienced pain in my lower jaw bone which is considered a "long bone" and therefore this unexplained pain that comes and goes is put down to Gaucher disease. Unwittingly, I have recently been clenching my jaw tightly shut, and after some days I realise my jaw is painful and my teeth feel like they are going to erupt. I have since heard from fellow sufferers that I am not alone with this additional symptom. One person had a night guard made to wear during the night to protect the teeth and cushion somewhat the jaw clenching shut and grinding teeth. The pain can radiate up towards the ears and I presume this puts pressure on the teeth too. Having had a crown fitted recently, I have suddenly found that it feels like it's slipped out of place. I guess I will making yet another visit to our friendly dentist. Just when you think you know all the symptoms that Parkinson's has to offer, something new appears on the scene. I have always meticulously cleaned my teeth twice a day, floss, use mouth wash, and go to the dentist as soon as something appears to be wrong, and yet I am beset with dental problems. I know other people who don't seem to take much care of their teeth and yet require little or no treatment at all. I suppose good teeth is down to one's DNA. How common is this problem? If you have Parkinson's and suffer from unexplained pain in your jaw and teeth, you can leave an anonymous comment below; it would be interesting to hear from you.

Another day with PD - March 14th 2013

With my 50th birthday looming ahead, I am beginning to feel like a well matured cheese, not that I smell I might hasten to add, but rather that I'm getting to the point where I've "past my sell by date"! Although according to Oprah 50 is the new 40, she is fortunate enough not to suffer from Parkinson's, not to mention having possibly the largest shoe collection a woman could dream of! Struggling with two diseases, day in day out, takes much effort, but I continue to remain cheery. I think no matter what, this integral part of my character will never cease. A sense of humour gets me through the rough days, and when my body that appears to be falling apart at the seams can't take any more, I resign myself and take a rest in bed. I've never been one for laying in bed, no matter how ill I feel, so it takes an awful lot to get me into bed for an afternoon power nap. I guess its part of my nature. Friends spontaneously dropped in for a visit the other night, and as there are still little projects to finish in our disabled friendly house, they were soon set to work (probably making them wish they hadn't stopped by!). I jest though, as they were happy to help and we very much appreciated the assistance, and ended up spending an enjoyable evening together, everyone busy doing something. No matter how much planning and thought went into building our disabled friendly home, I knew that there would be something we'd forgotten or didn't think about. It's impossible to get everything 100% perfect, and the other day I found one thing we had overlooked. The bathroom window's latch is too high up for me to reach, so I can neither open or close it. It's not the end of the world, a small error, but I thought I would share it with you just in case you are remodelling - you can learn from our mistake. This is the only thing we have found so far, but other than that, it looks like we managed to take everything into consideration.

Brain Awareness Week - March 15th 2013

Another week has passed by, and as the warmer weather approaches, it's very pleasant sitting in the garden. My dog and I both suffering bone pain often sit together companionably in the garden, the sun warming our bones. A good friend kindly took me out the other day as I had small errands to run, and although after a couple of hours I was awfully tired, it was a good feeling to have accomplished something, however small. Often spending days upon end at home, getting out now and then is important. I didn't realise how seldom I was leaving the house till one day my husband took me out, and as I stepped through our front gate, I was astonished to see that a few changes to our road had been made. My husband amazed, looked at me asking "when did you last set foot out of the door?" We worked out I hadn't been out in eleven days! Although perfectly happy and content to stay at home, I realise it is important to venture out now and then. The National Parkinson's Foundation have instigated "Brain Awareness Week" (from March 11th \- 17th) which is a global campaign to raise public awareness about the progress and benefits of brain research. They recommend 8 steps to a healthy brain: exercise regularly, eat a healthy balanced diet, give your brain a work-out, stay socially active, reduce any stress as much as possible, get enough sleep, ensure the best medications and supplements for your situation and avoid excessive alcohol consumption. Sounds like good advice to me!

Keeping occupied - March 17th 2013

When one is housebound due to ill health, it is vital to keep occupied. When I say keep busy, I don't mean for you to go overboard as in moving house, which is taking things to an extreme. Having recently moved home, we've hardly had time to breathe, and only now are things starting to fall into place and some semblance of normality can return. Although it takes me twice as long to get anything done these days, I continue to try and maintain a normal household schedule. I love to cook and bake, and much of my time is spent in the kitchen. Our dog is more than happy to clear up anything I happen to accidentally drop on the floor, and what husband wouldn't be happy to come home and find a freshly baked cake or cookies. So you can see, I try and keep everyone happy! Writing has become an important part of my daily routine, and has the additional gain of keeping my in touch with fellow sufferers. We try to keep our social life as active as possible, but often by 10pm my batteries fade and unlike the energizer bunny who just keeps going, it's as if someone has turned me "off" internally and I'm finished for the day. Finding something that you enjoy and occupies your time during the day, keeps you busy and focused on something apart from Parkinson's; so if you haven't got a hobby or activity, try and find one. It's a good defense at keeping Parkinson's in its place!

Music Magic - March 18th 2013

Music has long been used as therapy for many different reasons; not only in nursing homes, hospitals, day centers, but also in people's private homes. The benefits are very plain to see and healthcare professionals often recommend music therapy as an additional tool in treating a long list of conditions such as Parkinson's, depression, strokes, Alzheimer's and brain injury. Although there is little data proving why music and movement improve certain diseases, there is no doubt that there are positive effects on patients participating on a regular basis. For anyone who has difficulty in moving or speaking, music/dance therapy is definitely worth a try, in particular Parkinson's patients show remarkable improvement, not only with their movement but lifting spirits, almost like re-charging one's batteries. I find it highly therapeutic listening to music that I enjoy, and in particular, if I am having a bad Parkinson's day, music is a great distraction. I was listening to Christina Aguilera's song "Something's got a hold on me" and felt it was almost written for someone with Parkinson's in mind. Have a listen to the words!

Often people hear songs, but don't really listen to the words. When someone is talking to you, listening is not merely sitting and looking as if you are paying attention; it is taking in every word and processing its meaning, trying to understand a new point of view from a different perspective. Getting people's attention when it comes to unpleasant matters, and things we'd rather not think about is pretty hard to do. Having just had my recent article published on The Huffington Post, I can see that this particular topic still bears much stigma and shame. I hope you will read my article and pass it on to anyone you think may benefit.

Comedian Adam Hills - 19th March 2013

Having a sense of humour has always been one of my most valuable defenses against Parkinson's, and there is nothing quite like having a really good laugh to lift the spirits. Adam Hills is an Australian comedian who has born without a right foot, and through his standup comedy acts brings to the stage in a humorous manner, questions that so many would love to ask a disabled person. Although his performances contain some explicit language (which may be unsuitable for children or offensive to some), he certainly has the ability to see the funny side of life, particularly giving the perception of someone who does not see himself as disabled at all. His anecdotes and tales, although leaving the audience bent double with laughter, in fact address ordinary daily issues of having any form of disability, making the audience laugh with him and most definitely not at him. During his shows he has an interpreter using sign language on the stage with him, enabling anyone who is deaf to enjoy his unique ability to make people laugh about awkward situations, whilst in fact sending an underlying message that having any form of disability makes you no different from anyone else.

Listen to your inner voice - 20th March 2013

When instinctively you feel something is wrong - you just don't feel quite right; trust your instincts, for they usually wont lead you astray. If something is amiss, don't ignore it. I was given pain relief medication, and getting a repeat prescription found there was a noticeable difference. I phoned to ask if I had been given the wrong one, or if the company had simply changed and improved its product, but was told I had the correct medication and that it might be simply a little stronger. The conversation was short and I did not feel satisfied or have peace of mind, but trying not to listen to that little nagging voice in my head, I took his unsound advice and continued to take this medication. After several more nights, my blood pressure dropping rapidly leaving my heart palpitating, I telephoned again and this time speaking to a different person, I pushed for a better answer and explained about the symptoms I was experiencing. The lady on the phone told me she would check to see exactly what I had been given, agreeing with me that I should not be experiencing these extreme and unpleasant symptoms. I quickly received a call back from her, apologizing and confirming that I had indeed been given the wrong medication and it was in fact a stronger version, and clearly not suitable for me. What is the moral to this story you may ask? You know your body and what you are feeling better than anyone, so if something seems out of sorts, don't let it go - find a solution or answer that makes sense and ultimately leaves you feeling better. If you don't speak up for you - who will?

Becoming forgetful - 21st March 2013

I have always been bad at remembering people's names, and as I grow older, I'm not sure if it's my age or the Parkinson's, but this problem is getting worse - and embarrassingly puts me in a tight spot on occasion. A close friend told me recently a trick when this uncomfortable situation arises. Ask the person directly what their name is, to which they will immediately answer, probably assuming you have a poor memory, but before you give them a chance to doubt your mental capabilities, you answer "I knew what your first name was, I was referring to your surname".

I also heard that when being introduced to someone for the first time, if one repeats the person's name and uses it immediately in conversation with them, it re-enforces their name upon your memory.

Maybe this is an old wives' tale, but I read about the properties of cinnamon helping one's memory. Hearing this, I started to add cinnamon liberally to my porridge or cereal at breakfast, to cakes, on top of pancakes - you name it, if you could add a sprinkling of cinnamon I would do so. One day a friend asked me why I used so much cinnamon, and as I was about to launch into "why", I couldn't for the life of me remember!

Everyone forgets things - so don't let it bother you. We are all guilty at times of forgetting someone's name, where we put the house keys, or a birthday. Don't be so harsh on yourself - you are forgiven!

Parkinson's Awareness Month 2013 - 22nd March 2013

As a child growing up in England, April 1st was a day to play tricks on one's class mates (we called it "April Fool's Day"). This date also happened to be the birthday of a beloved aunt of mine. Little did I know back then, that the 1st April would have a very different significance later on in my life. April 1st is the beginning of Parkinson's Awareness Month. By getting together, joining forces, with one loud united voice we can make the world stop and listen, take notice, and most importantly make a difference. If you would like to see 30 ways to raise awareness take a look at The Parkinson's Disease Foundation site. Each person is like a singular piece of a puzzle, but put us all together, and you have a clear strong picture. See what you can do this April to be piece of a global Parkinson jigsaw puzzle. Take a moment to look at my latest article on The Huffington Post. I wish you all a very good weekend, and most of all good health.

Catching a centipede - 24th March 2013

A friend of my daughter's is studying insects and her homework assignment, as strange as it may sound, was to collect 30 specimens of bugs. Deciding to help and take on this challenge, recently having earth delivered to our garden, I quite quickly managed to find a few every day common varieties. This morning, much to my horror, I found a brightly coloured centipede laying in our kitchen sink. It was about 6 inches long and laying very still at first. Immediately thinking this would make an excellent specimen for the young lady studying entomology, the question was now how to catch this little critter with the household still asleep, and my lack of dexterity, extremely stiff fingers along with slow reactions, Parkinson's and I were going to have a tough time catching this unexpected visitor. I grabbed an empty clear plastic box and placed it over the unsuspecting centipede, only then realising how fast they can move as it struggled to escape its confinement. Great! now what was I supposed to do? I had no way of getting on the lid. I took a saucepan that was next to the sink drying, and for weight put it on top of the box, lest my captive should escape. Finding a stiff piece of plastic packaging in the bin, it made for a perfect solution, as I carefully slid it under the container, all the while the centipede wriggling and moving at great speed frantically trying to escape. Holding tightly the plastic sheet in place I was able to turn the box up and place the lid on top, sliding the plastic away. Now safely sealed inside the box, still no one was up to see the antics going on in my kitchen, and how despite having Parkinson's I had managed to capture the centipede alive. Why is no one ever around when these things happen? It's like watching someone commit a traffic offense when there's not a policeman in sight. Well after all this excitement, and it's not even 07:00, I think I will put the kettle on and make a hot drink.

Parkinson pains - 25th March 2013

Many don't associate Parkinson's with having pain, when in fact unfortunately, there is a great deal and variety of different pains experienced when suffering from Parkinson's disease. I'm especially lucky (forgive my British sarcasm!) for having a double dose due to chronic bone pains from Gaucher disease. A while back , I was able to differentiate between the Gaucher bone pains and those related to Parkinson's, but of late, the pains are so constant and almost everywhere in my body, it's now difficult to pinpoint what belongs to which disease. But most definitely Parkinson's is painful. Just to clarify; there is pain in my shoulders, upper arms, hands, fingers, arms, legs, torso, legs, joints, muscular spasms and cramping. These are to mention but a few. Simply turning over in bed or getting up in the morning is extremely painful and difficult. My doctor recommends me resting each day, but often I can't contemplate getting back into bed for an afternoon rest simply because it is just too painful getting up again. I often rest in a comfortable arm chair in the lounge with my feet up on a foot stool. Now the warmer weather is approaching, I will hopefully be able to rest outside in the garden, warming my painful bones in the sun. So if anyone out there thinks that Parkinson's is merely shaking and tremors, you are terribly wrong. Pain is a huge element of this degenerative disease, and dealing with constant pain is not only very wearing but quite often difficult to find the right pain relief.

Medical marijuana - 26th March 2013

One of the many symptoms of Parkinson's is pain - some of which is understandable, but much of the pain is inexplicable, leaving the patient in constant misery. Latest research has revealed that genetic factors may be able to explain such pain, and new understanding will enable a unique treatment to be available. According to a recently published research paper in "The European Journal of Pain", variations of functions were observed regarding pain connecting to cannabis-like substances in the brain. The results of the Neurology Department reported that the results support the treatment of Parkinson's patients using medical marijuana. Further research is going ahead, looking into the use of cannabis for pain relief. A large percentage of Parkinson's patients suffer from unexplained pain, and if this symptom can be relieved, the quality of life will certainly be increased. The medical cannabis can be administered by liquid, (not dissimilar to an eye dropper bottle), thereby ensuring the precise amount is given by the exact number of drops administered under the tongue, for the optimum dosage according to each patient. Constant pain is very draining, and as the findings suggest, this could well be a future option for some patients.

A smashing time! - 27th March 2013

Our drinking glasses have been disappearing slowly but surely leaving us with an odd assortment. I have lost count of how many I've broken, but thankful they have been every day ones and not good crystal glasses, which I avoid like the plague. We eventually decided it was time to replenish our poor non-matching selection and bought several different size glasses, all in the same style. What fits my small unsteady hand is far too small for my husband's. They stack one in side another which makes for easy storing and seem quite robust. Having Parkinson's makes one look at everyday things that possibly someone else would not give a second glance. We were at a café and ordered coffee, but when the coffee was served, the handle of the cup was so small, I could not fit a finger inside, and it was positioned in such a way that I couldn't grasp the slippery porcelain handle securely enough. I ended up cupping my coffee with both hands as if I was in freezing conditions on a mountain side somewhere warming my hands. I don't know who designs these "fashionable" cups but they are a Parkinson's nightmare. Simple things like cutlery can make a difference too, with thick handles, it is far easier to hold. My toothbrush for instance has a very thick handle, and any pen I write with, also appearing child like, has a thick body enabling me to grasp it a little better. When buying something like drinking glasses, cups, pens or your toothbrush, before you purchase make sure you hold it in your hand and see if it is suitable for you.

Balancing act - 28th March 2013

It gave me great pleasure the other night, sitting around our dining table, looking at all the faces of my family. Everyone was busy eating, drinking, chatting and laughing. Taking it all in and enjoying the moment, I wanted to savour the feeling of complete contentment and sheer delight, entertaining those I love in our home. People are often very quick to assume that it is too much for me to have guests over, and in a way they are correct, for this takes a great deal of effort and energy, and afterwards it can take me a day or two to recover from this activity. Yet the emotional benefits of having people I care about come to our home for a meal, or even just coffee and cake brings fresh life into the house and the pleasure enjoyed most certainly is worth it. It's a matter of finding the right balance I've found, keeping up a social life and inviting guests, whilst making sure not to over-do things and take a day or two in-between events to recover. I try to think ahead and plan carefully, often making lists for myself so that I don't forget something. Being methodical and organised by nature, helps me cope, and although it takes me twice as long as it used to doing anything, I somehow manage. As beneficial as it is for me to have guests visit, it is equally as important to my husband and daughter. Trying to live as normal life as possible taking into consideration my limitations is a continual balancing act.

Call for Help - 29th March 2013

Having Parkinson's for several years now, my family know me only too well, and over time have come to recognise the signs when something is wrong, if I'm in pain, or simply having a bad Parkinson's day. Particularly my husband and daughter know instantly when I call out for help according to the intonation in my voice. Getting dressed can be quite a challenge, and if I get stuck in a piece of clothing, not able to put it on fully, or remove it altogether, my cries for help are unmistakable, and who ever comes to my rescue usually gets a good laugh seeing me unable to escape my confinement, entangled like Houdini in one of his famous acts. So you see, I do try my best to keep the family entertained! If I shout in an urgent fashion from the bedroom that I need a bucket; fast as lightening, a bucket appears by my bed, as little explanation is necessary, for it is quite clear, feeling nauseous I probably wont make it to the bathroom in time. There are other times when they hear something smash and me shrieking, which is often followed by some choice words that a 'lady' should not be heard uttering, as I accidentally drop and break something. But despite the difficulties that daily plague my life, never knowing if a day is going to be good or not; I live in hope. I hope you'll take a look at an article I wrote for The Huffington Post. Wishing you all a good weekend, and if like me, you suffer from Parkinson's, may you have more good days than bad.

Faith \- 31st March 2013

Parkinson's can affect anyone - it's not fussy, and doesn't discriminate, no matter what age, religion, where you live, if you are rich or poor, whether you're old or young.Having faith, whatever your religion or beliefs, gives many people the strength and conviction which helps them accept illness, disability and even death as part of an eternal plan that we do not have any control over. Some might see these as lessons in life or some sort of initiative test we have been assigned. Maybe it is simply human nature to want and need to believe in something. Whatever your beliefs, one's faith understandably might truly be shaken up in times of great hardship, particularly when illness is involved, making us re-evaluate our belief system. Why do such terrible things happen to good people? Blindly having faith that makes us close our eyes and believe, may give some the strength to carry on, but others can become disillusioned and discover their faith slips away. Don't worry what others may think, do whatever works for you, and what is ultimately in your best interest.

Motivation - 1st April 2013

Someone gave me a piece of paper from a cross stitch pattern that read "Count your life by smiles not tears". As I looked at this fragment of paper I remembered all the long conversations we'd had, and how lucky I am to have such wonderful people in my life who inspire and keep me motivated.

Today is the 1st April the beginning of Parkinson's Awareness Month. During this month, many of the support groups and organisations will be holding events to raise funds for research and increase public awareness. Why not take part in an activity or if you have a good idea - create something original. So let's get motivated and make April a month of non-stop action; that everyone pays attention to a cause that lies close to the heart of so many millions of people around the world. The more noise we make, joining forces in great numbers we are strong, and with one united goal in mind - let's make 2013 the year that a cure is found!

Centipede saga Continued... - 2nd April 2013

If you have been following my blog, you will no doubt have read my entry on 24th March, and my antics with a live centipede I found in my kitchen sink early that morning. I had managed to catch it alive despite it putting up quite a fight as it struggled frantically to escape being incarcerated in a Tupperware box. I am sure that Tupperware did not intend their boxes being used for such purposes, but it was all I could grab quickly. As I previously explained, a friend of my daughter is studying entomology and her homework was to find 30 different specimens of bugs and insects. Seeing this marvellous specimen of a centipede, brightly coloured with orange/red and black markings I was determined to catch it for her. Having given all the bugs I had found in the garden in their containers to this young lady, I proudly pointed to my interesting centipede measuring an impressive 6 inches long with pincer type horns. She was horrified to see what I had caught with great difficulty, not realising that this little critter actually was very dangerous. I now know that this particular centipede is in fact poisonous, very fast and I was extremely lucky that it had not bitten me. I was fortunate this story didn't end up with a visit to the local hospital. So a word of advice for anyone who should happen to find a brightly coloured centipede.... leave well alone! Next time I hear of some homework project that entails capturing insects or bugs, I'll curb my enthusiasm!

On-line libraries - 3rd April 2013

I have always loved books, and the love of reading was instilled in me since I was a young child. Today with so many e-books available, it is overwhelming trying to find something that is of interest to me. There are some wonderful sites, however, who are committed to promoting good books of worth that have passed high literary standards. It's a little like an Internet library which concentrates on smaller authors who have written books to inspire, empower and enlighten. There is an on-line Directory consisting of many interesting books, with a treasure trove of good books.

I remember sitting in the local library when my daughter was very young, long before e-books came along, and we'd sit in the children's section where there were comfortable seats and toys which created a cosy inviting corner. Together we would choose a book from the shelves, and sitting comfortably, I would read aloud to my daughter. After doing this on several occasions, I realised that other mothers were turning up at the same time as us, and would gently lead their children over to the corner where we were sitting. Engrossed in reading aloud, I suddenly looked up to find that I was no longer reading just to my daughter but to several other children, all eyes upon me, spellbound as I turned yet another page as the story unfolded. Giving children an appreciation of books at an early age, is a gift they take with them into adulthood.

Finding joy - 4th April 2013

Trying to find joy each day, no matter where or what you are doing is essential in maintaining a positive attitude. The things I find joy in may sound small and inconsequential to you, but in poor health, finding myself at home most of the time, sometimes the smallest things bring a smile to my face. Sitting in the garden, looking up at the sky, I was struck by the beautiful shade of bright blue, without a cloud in sight, the intensity of colour was magnificent. Our small garden is constantly altering with the changing seasons, and I notice as each tiny new leaf or blossom appears. I wouldn't say I have green thumbs; in fact far from it, for I once had the ability to destroy even a plastic fern, but that was long ago and I wont bore you with that embarrassing episode. Thus our little garden is filled with only the hardiest varieties of plants and flowers that require low maintenance. It is a haven of tranquillity \- my very own secret garden of sorts.

Serving a meal that I have managed to prepare alone, proving my cooking skills are still in tact not only brings me but also my family, joy. I particularly notice when it abruptly goes very quiet at the dining table as suddenly everyone hungrily tucks in and are too engrossed with the food to talk. As I look at the satisfied faces around the table, I feel a sense of accomplishment.

Doing something each day that you love and enjoy is important for everyone. Whatever makes you smile and feel good - I highly recommend making a little time each day just for yourself. Believe me; you're worth it!

No need for apology - 5th April 2013

A relative recently apologised for not reading my blog, and I immediately told her that I understand and it's OK, since the topic I write about is, thank goodness, not applicable to her. Of course she is interested in my welfare and glad that my books are being read around the world, but she like many of my family and friends are now well versed in Parkinson's symptoms and it is not for them that I continue to write. Although initially upon diagnosis I wrote for myself, as a form of therapy, I soon found that fellow sufferers, caregivers and curiously doctors too, were in fact my audience. However I was surprised to hear of a lady with Parkinson's who didn't want to read anything I wrote since she was afraid it would be depressing. I grant you, I write honestly and tell it all, leaving nothing out. No topic related to chronic disease is too personal or shameful to write about, for my aim is to offer support to those who have no other means than through the Internet, ensuring they know they're most definitely not alone in their daily struggles. The many varied symptoms, side effects, and general difficulties encountered living with Parkinson's and Gaucher is what I focus on. I write from my heart, and sometimes I may have a humorous tale to tell, a useful tip or new information to share, or on occasion, experience a bad day which any fellow sufferer can relate to. If I were to continually write only cheery messages of hope, day in and day out, I think my audience would shrink and disappear overnight, for this is not realistic nor would it be truthful. My latest article on The Huffington Post is now up on-line, so if you'd like to take a look click 'here'. Have a good weekend everyone.

Coming down to earth - 7th April 2013

We had a large amount of earth delivered for the garden and this mountainous heap, rich brown, soft and inviting, silently beckoned me like a giant sandcastle that had just been destroyed by delirious children! It has been three months since my last fall and as I stood there I could feel my balance wane; the familiar feeling I was about to fall came over me, but I could do nothing to prevent it. As if in slow motion, I looked at my husband who was just out of reach, and back I fell, thankfully onto the soft earthy heap. My inner child has a habit of appearing at the most inopportune times, as I was sorely tempted to make a "snow angel", well all right, an "earth angel", but as appealing as the thought was, I lay still unable to move, laying on my back in the soft brown earth. Firstly the concerned look on my husband's face and then our dog, who despite having great difficulty in reaching me, persevered to get to my side, as she always does whenever I fall. What brought me quickly to my senses, was the thought that maybe there was a poisonous centipede crawling around, like the one I had found last week (blog entry on the 24th March and the continuation of this saga on 2nd April) my husband swiftly hauled me up out of the dirt. Thankfully I was not hurt, just a little muddy and decided it was time for drink; a cup of tea. Maybe this is where the saying comes from, "Here's mud in your eye" which is used when making a toast drinking with someone, although I doubt it originated from drinking tea! I should imagine it's origins were a shot of something a bit stronger!

A picture's worth a 1000 words - 8th April 2013

Following Jill Sadowsky's blog on mental health each day, I found it quite astounding to see a scan showing a healthy brain next to a brain with schizophrenia. They say a picture is worth a thousand words, and in this case - it couldn't be more true. When one has a broken leg and is in a plaster cast, there is no stigma attached, no embarrassment, an x-ray clearly shows the break, an understandable tangible explanation, not to mention a great opportunity for family and friends to write or draw something silly on a plaster cast. However, when an illness is neurological, and the outward signs are not as simple as a plaster cast on a broken bone, the fear of the unknown takes over, and this is where stigma maliciously slide's in. Thank goodness, slowly through changing times and great efforts to educate such as the tireless work of Jill Sadowsky and many others who are doing all they can to bring greater awareness to this problem, hopefully mental health will be given the same dignity afforded to other serious diseases. Parkinson's, Alzheimer's, dementia, schizophrenia to mention a few, are all neurological illnesses, and once you've seen a CT or MRI scan, being visual, one can plainly see the problem. There is no hocus pocus, nothing scary, and most definitely does not deserve the shame and stigma usually attached to mental health. To illustrate the point, the pictures below plainly show the problematic area. The upper picture is of a normal healthy brain, and the lower one is of someone with Parkinson's disease. You can clearly see the loss of Dopamine in the Parkinson's diseased brain by the less blackened areas. As you may well know, April is Parkinson's Awareness Month, and you can play a part and show support by forwarding this blog or sharing it on your Face Book. Education, creating awareness and knowledge is empowerment, so lets liberate stigma and send it packing once and for all !

Lady bird - 9th April 2013

A friend of mine who loves lady birds (ladybugs) has them everywhere, and I decided to adopt this cheerful harmless bug as my symbol too. When travelling abroad, we take my wheelchair with, and most wheelchairs look pretty much the same. I would love one in cornflower blue or an outrageous fuchsia pink, but the manufacturers seem to lack imagination and stick to their regimented black and silver grey metal frames. To make it easier to quickly identify my chair when flying, I found some lady bird stickers, and stuck them on the metal frame at the sides, enabling us to spot my chair immediately as it was removed from the hold. I then added these stickers to my crutches, making them personalized so that I don't take someone else's instead of my own. I had the same mobile phone as my daughter some time ago, a simple phone which is easy for me to use, but both our phones were black and identical, very easy to mix up, so again I put a ladybird sticker on my phone and its charger so there would be no mistake. the same applied to my MP3 player and it's charger. In today's hi-tech world we all have mobile phones, and chargers for various equipment, and I've found using my simple ladybird sticker system quite effective. So now anything in our home with a ladybird on it, undoubtedly is mine! You too might find it helpful to adopt your own symbol and tag all your things - it just makes life a little easier.

Explaining to a child about PD - 10th April 2013

How do you explain to a child a complex disease like Parkinson's, that sadly at present has no cure, and to gently describe how this degenerative disease takes its course. Children are curious and ask questions, to which they deserve honest logical answers. A young child may have a grandparent, or even a parent with Parkinson's, and believe me, children don't miss a thing. They are far smarter than we give them credit for, and have a greater capacity for understanding than we could possibly imagine. I have had to explain on several occasions to young children, who don't know what stigma is and show no shame in staring at me, simply because they don't understand and know my movements are not normal. I explain using straightforward easy language that they can comprehend, which leaves their inquisitive questioning minds satisfied. I came across a site with several books aimed specifically at children, explaining in plain simple terms what Parkinson's is and how is effects their loved ones. I wanted to share this site with you, so that anyone out there, with a child in this undesirable situation, may benefit from having a helpful educational tool in the form of a children's book. So take a look at Five Great Children's Books about Parkinson's Disease.

PARKINSON'S DAY 2013 - 11th April 2013

I don't think Dr. James Parkinson, who was born on April 11th 1755, in his wildest dreams, had any idea his birthday would be remembered by millions in the world. Each year the 11th April is marked around the globe as 'Parkinson's Day'. An estimated 7 to 10 million people suffer from Parkinson's disease, and there are likely many who are not yet diagnosed, as the symptoms vary from patient to patient and diagnosis is not a simple clear cut blood test as with other diseases. Statistics show that men are one and a half times more likely to have Parkinson's than women. To give you an idea how common this disease is: approximately 1 million Americans live with Parkinson's disease, which is more than the combined number of people diagnosed with multiple sclerosis, muscular dystrophy and Lou Gehrig's disease. The number of Young on-set Parkinson's patients (those diagnosed under the age of 50) is frighteningly on the increase. Many Parkinson's organisations use the tulip as their symbol, and one particular species named in Dr. Parkinson's honour is called the 'Tulipa Doctor James Parkinson'. The tulip is the national symbol for Parkinson's disease, and many support groups have pins made with their own take on this cheerful flower. Show your support by passing on my blog to as many people as you can. Help me get the word out today and be part of bringing greater awareness around the world.

Hand on heart - 12th April 2013

With hand on heart, I swear to tell the truth, the whole truth, and nothing but the truth! This is what my blog is all about; the bare, naked uncensored daily trials and tribulations of a woman, a wife and mother, a person just like you and millions of others around the world who suffers Parkinson's. Only a small number of patients are plagued with both Parkinson's and Gaucher disease. Someone asked me the other day, "when did you start writing?" and my answer was, "as soon as I could read and write". I wrote my first short story when I was five years old and the school teacher told me I had a talent for writing. What she didn't understand was my need to pour forth my thoughts and feelings onto paper, which today is known to be highly therapeutic. I was just doing what came naturally to me. No one expected anything from me, nor did they encourage my writing abilities, for all were convinced that a child in such poor health did not have many years to live. Let me take you by the hand and lead you back to the year 1968 when I was first diagnosed. Born with a chronic rare disease, there were no specialists or support groups back then, and little was known about this rare genetic disorder. The prognosis for a five year old child in those days looked very dim indeed, and the doctors forecast I wouldn't live much past puberty. How wrong were they?!!! Now nearing fifty years old, I think I can safely say, those predictions were very wrong.

Ageing \- 14th April 2013

Someone sent me the following in an e-mail. I have no idea who wrote it, so if you are the author of the following, thank you for sharing your words of wisdom. I think they speak to us all.

As I've aged, I've become kinder to, and less critical of, myself. I've become my own friend. I have seen too many dear friends leave this world, too soon; before they understood the great freedom that comes with aging. Whose business is it, if I choose to read, or play on the computer, until 4 AM, or sleep until noon? I will dance with myself to those wonderful tunes of the 50s, 60s & 70s, and if I, at the same time, wish to weep over a lost love, I will. I will walk the beach, in a swim suit that is stretched over a bulging body, and will dive into the waves, with abandon, if I choose to, despite the pitying glances from the jet set. They, too, will get old.

I know I am sometimes forgetful. But there again, some of life is just as well forgotten. And, eventually, I remember the important things. Over the years, my heart has been broken. How can your heart not break, when you lose a loved one, or when a child suffers, or even when somebody's beloved pet gets hit by a car? But broken hearts are what give us strength, and understanding, and compassion. A heart never broken, is pristine, and sterile, and will never know the joy of being imperfect.

I am so blessed to have lived long enough to have my hair turning grey, and to have my youthful laughs be forever etched into deep grooves on my face. So many have never laughed, and so many have died before their hair could turn silver.

As you get older, it is easier to be positive. You care less about what other people think. I don't question myself anymore. I've even earned the right to be wrong. I like getting older, it has set me free. I like the person I have become. I am not going to live forever, but while I am still here, I will not waste time lamenting what could have been, or worrying about what will be. And I shall eat dessert every single day (if I feel like it).

PD Pain - 15th April 2013

I'm an old hand at pain, we've unfortunately been life long companions, and being in constant chronic pain is very debilitating. Not only is it wearing, it makes one short of temper, focusing on a task becomes difficult and in addition pain disturbs one's sleep. I am often rudely awoken by pain, and trying to find a comfortable position to get back to sleep, is like trying to get a ticket to the Super Bowl the night before the game - it's just not possible! Changing positions in bed when you've got Parkinson's and I have the added bonus (forgive my British sarcasm) of painful hips due to Gaucher disease, turning over is extremely difficult, and I am quite sure I constantly disturb my long suffering husband who puts up with my nightly antics. Pain killers work to a certain degree, but don't eliminate the pain entirely. What I find particularly irritating is when people offer advice, well meaning and with good intent, I do realise they are only trying to help. However, I do wish they would refrain, in particular when convinced if I were to take some sort of herbal remedy, all my troubles would be over. I wish it were as simple as this! My health situation is much more complicated than they could possibly realise. I don't mind receiving sound advice from someone having personal experience with both diseases or a trained doctor who specialises in these fields, but when people have no medical training, and know nothing about Gaucher or Parkinson's disease, it is not helpful nor supportive.

Could it be simply Vitamin D? - 16th April 2013

After having a blood test a few years ago, my level of Vitamin D was so low, I was advised to take Vitamin D drops daily, which I have been doing ever since. I think that anyone suffering chronic illness or disability, might find themselves at home inside most of the time, and thereby not exposed to the natural sunlight where most gain a sufficient amount of Vitamin D. I am sure this is a common problem \- being stuck indoors, it may not be possible, or the weather not permitting to be outside. I knew that Vitamin D was important, and had read up on it, but was very surprised to read an article about the properties helping in slowing down the progression, particularly with those cases that appear to be hereditary. Take a look at the article on The Michael J. Fox Foundation site and read for yourself some very interesting findings.

My evil twin - 17th April 2013

Feeling a little worse for wear, as if someone has removed my batteries and I'm running on an empty tank of fuel, I have been trying to take things easy the past few days. This is easier said than done, as its really not in my nature to sit and do nothing or just laze around. I have a huge fighting spirit and desire to experience and enjoy all I can, which is stuck inside this body of mine that doesn't work properly! It's like I have an evil twin inside me who's ready to take on the world, wants to dance the night away and paint the town red, whilst the other part of me knows the reality of my situation and is quite content to stay at home with my darling husband and daughter. I've often heard people pose the question: "Is it better to be of sound mind and suffer from a physical illness, or lose one's marbles yet physically be perfectly healthy?" To be honest, I think both scenarios stink! I took care of my mother for the last few years of her life and watched her mental health decline as dementia stole her away little by little, till there was nothing left of her apart from an empty shell barely resembling the woman I once knew. Here I am the total opposite, with sound mind, yet my body is rebelling and battling each day two major diseases. I have everything to live for, and this pushes me on, keeps me going when the going gets tough. Apart from which, the fact that no insurance company in the world is willing to risk giving me a life insurance policy (what a cheery encouraging thought) I am in the strange position of being worth more alive than dead! How interesting is that? the insurance companies presume I'm a bad risk and think they know something the doctors do not. I will not be defeated by pessimistic insurance businesses; if anything this strengthens my verve for I aim to prove them wrong. My husband often tells me I'm not normal, and the doctors have rarely seen a case such as mine, so with great determination, I'm going to grow old, have grey hair, lots of laugh lines, and enjoy my life as much as I can.

You have a voice - 18th April 2013

I have been watching in total awe at the energy, enthusiasm and hope that sufferers along with their family and friends around the world are displaying and expressing in a loud voice creating global awareness to our plight in finding a cure. April is Parkinson's Awareness Month, so many have put on their thinking caps and come up with some original ideas, and ways of getting the word out there, making people stop and pay attention. Everyone has a voice, and together we can raise the roof with a huge crescendo, so that finally no one will be able to ignore us. We will be heard - we are full of determination, and most of all hope. Every day brings us closer to finding a cure and the end of suffering this intolerable disease. I found a choir on YouTube and wanted to share it with you. Watching their faces, you get a real sense of community - the Parkinson community that many belong to. Well done to 'The Voices of Hope Choir' - I think the world has heard your message loud and clear - bravo to you all!

Serenity - 19th April 2013

As I am writing this blog today, every delicious sip of my Cadbury's hot drinking chocolate is somehow comforting in the early morning chill, for it is not yet 07:00. You might still be fast asleep, or maybe you're on the other side of the world and just finishing a working day. We all lead busy lives, whether healthy or not, and in this fast pace of life today, everyone needs a little serenity. Serenity may mean something very different to each of us. For some, it may be sitting on a mountain top, breathing in the clean air, reflecting on the dramatic view from high up. Maybe you prefer the harsh yet natural stark beauty of the desert, enjoying the silence which is almost deafening. My place of serenity is much closer, and far more accessible. I merely need to step outside and sit in my enchanted garden with my husband and our dog by my feet. Yesterday afternoon it was sunny and warm whilst sitting out in the garden; a feeling of contentment and pure serenity flowed over me, like a welcoming warm ray of sunshine and I just enjoyed being in the moment. I have been very tired of late, exhausted would be a better word, or maybe drained; but you get the idea - I'm worn out! This is when the rest of the household take over, and make supper. So what's on the menu for tonight you may well ask? Well I will just have to wait and see. I wish you all a wonderful weekend and may you find your serenity and simply enjoy "being in the moment".

Having patience - 21st - April 2013

One of the most tedious and time consuming factors about being a caregiver, are the many hours spent waiting in hospitals or clinics. I always feel guilty sitting waiting for yet another test or to see one more doctor, at how unselfish and without a single word of complaint, my patient husband accompanies me to all my medical appointments. I am sure he is sitting there thinking of all the things he should be doing, and understandably would rather be elsewhere, but not once in all the years we've been together, has he ever uttered one word or made me feel uncomfortable. It is surprising how exhausting sitting doing nothing in countless waiting rooms can be for both of us. By the late afternoon, having been at the hospital since early morning, we leave; tired we finally wind our way home.

I was impressed to see the new lifts ('elevator' for my American readers!) in our hospital, for they have done some renovations and the buttons to press are now on a horizontal panel low enough for anyone to reach sitting in a wheelchair. Simple thoughtful alterations can make such a difference to a disabled person giving one a feeling of independence. It's bad enough having to ask for help with so many things, and the frustrations that one can no longer do things that were once taken for granted. So although being able to press the desired button in the lift may sound a small thing, to someone who is wheelchair bound - it is quite significant.

How do you see yourself? - 22nd - April 2013

We all have a picture in our mind of how we look, but what others see, is sometimes quite different. Today's body image is warped by the fashion world using ultra slim models, and the film industry and television presenting slender actors, which leaves many women feeling inadequate, knowing the impossibility of reaching anywhere near this perfection we are brainwashed in seeking. It can be even more damaging when disabled or suffering from chronic disease, resulting in low self esteem and image. I admit to being a few kilos heavier than I should be, and if I didn't have such a sweet tooth, I'm sure with a little willpower, the extra weight would disappear. However, apart from this, I wouldn't want to change a thing. I have never endorsed or felt comfortable with elective surgery. Over the years I have required a lot of necessary surgery due to my ill health, and if after all this, I felt compelled to change my appearance through elective surgery, it would clearly indicate a feeling of poor self-image.

How sad it is that women are not able to embrace what nature has given them, and to allow the years to gracefully add character to our faces. When I look at my wrinkles and the crows feet by my eyes, I see only the laughter and happiness I have experienced which is now etched on my face. Removing these lines would be almost like erasing memories and wearing a false mask. As it is, having Parkinson's, my expressions are often now not visible as the familiar "masking effect" of the disease hides my emotions. I found it most interesting that Dove have taken to addressing these issues of self image, and through very imaginative advertising, are attempting to reach the 'real' women of this world. I am not advertising Dove or telling you to buy their products, but merely applauding their efforts, which you can see in this clip.

Here's a first - 23rd - April 2013

This has to be a first: a questions/answers time with Michael J. Fox, being interviewed by someone with Parkinson's, along with a team of people who are all fellow sufferers, answering questions from Parkinson's patients. If you haven't got Parkinson's, I guess in this particular instance, you'd be the odd one out! The Internet has given us the opportunity of viewing this 22 minute Google Hangout, and hearing Michael's answers. Obviously I was able to relate to what Michael was saying, and I'm sure anyone suffering Parkingson's felt the same. I was interested to learn that Michael, like myself, has a large dog. A dog definitely adds something to a home, and particularly when a person is ill, a canine companion can be of great comfort and a welcome addition to the family. Michael speaks of returning to work but obviously only able to play parts that require someone with Parkinson's, taking into account symptoms such as 'masking' dyskinesia and rigidity to mention a few. It may sound a little restricting, but think about it; what an incredible way of getting the message out to people, bringing greater awareness through comedy on our television screens by a well loved actor. What better advocate could we ask for?

PD Lingo - 24th - April 2013

I am not a doctor and have no medical training, apart from taking a first aid course a few years ago. However, anyone who suffers chronic disease, usually takes it upon themselves to become educated and fluent with the symptoms, medications and lingo associated with their particular illness. When I first started to hear the words dyskinesia, bradykinesia, dopamine, levodopa; these were all new to me. I felt as if I needed a special Parkinson's dictionary to make sense of all this medical lingo. Having now lived with Parkinson's for over six years, I am well versed with all the relevant terminology. I believe the more informed you are, the better your prognosis will be in coming to terms with a life changing disease such as Parkinson's or Gaucher disease. Now if you think the lingo relating to Parkinson's requires a little studying, the jargon related to Gaucher disease is even worse and you'll need to learn how to say lysosomal, Erlenmeyer flask deformity, bone infarctions, bone necrosis or glucocerebrosidase. These long medical words that are sometimes tongue twisters brings to mind a word from the film "Mary Poppins"; supercalifragilisticespedaliocious! Now if you can say that, you can say anything!

Mistaken identity - 25th - April 2013

I was in a shopping mall with my daughter, and a new hair dressing salon was having a promotional and doing ladies hair for free. Before I knew if, my daughter was sitting in a chair and a young man was busy combing through her lovely long locks with a dazzled look as if inspiration had just hit him. Sitting in my wheelchair, a young man came over to me and wheeled me over to another station where he too began to comb through my hair chatting away as if we'd known each other for ever. Whilst he tweezed and curled my hair, sprayed various products on for good measure in the hope of promoting their merchandise, he asked me casually what I did. I told him I was an author, to which he asked "what's your latest book called?" I told him "A Silver Lining", to which he got very excited and called over one of his colleagues. "This lady wrote 'A Silver Lining' - isn't that amazing, and here I am doing her hair!" I was a little taken a back, and surprised at all the fuss and excitement, and that he had heard of my book, but I didn't dwell on it, and simply thanked him for his compliments. After we left there, I told my daughter what had occurred, and she smiled, knowing immediately what had happened. A film called 'Silver Linings Playbook' had just been released and the young hairdresser had thought I was the author. So just in case anyone else out there has had the same thought - it's a case of mistaken identity - my book is called 'A Silver Lining', and has not been made into a film, at least not yet. However if there is a film maker out there who would be interested...........well you know how to find me!

A dog's word - 26th April 2013

Today my owner Elaine, has given me the opportunity of speaking. Although dogs can't really talk, she pretty much knows what goes on in my canine head and so I thought I'd tell you what its like to live with my pack or as you humans say "family" along with Parkinson.

I first started hearing the name "Parkinson" about six years ago, when I was a growing young adolescent pup. At first I thought it was a disliked long lost relative who uninvited was coming to live with us, and for ever it appeared! My vocabulary for a dog is quite extent, yet I wasn't too sure who or what "Parkinson" really was. He was certainly disrupting the household, which until then had been much like any other family home.

I started to pay closer attention to my owner, as she appeared to have something wrong with her leg, and our walks became slower and slower. Not that I minded, for I'm always willing and eager to go for a walk with her, but found now I had time to sniff every single bush and tree as we crept along at a snails pace. The walks became shorter too, and then one day, she took me completely by surprise and fell, laying face down in the sand. I immediately ran over to her and by licking her face thoroughly and a second time for good measure, I could see she was alive. For some reason she was having difficulty getting up, and although I have been trained to do various tasks, I was at a loss for what was expected of me. Fortunately, my instincts told me to stand next to her shoulders. I allowed my owner to put her full body weight (she really should lay off the sweets!) on my broad shoulders so that she could get up. Receiving lots of praise, I knew I had done the right thing, and now whenever I see her laying on the floor, I help her up.

My duties in the home also increased, not that I minded, in fact I was happy to help out. My help and expertise at clearing up food spilt on the kitchen floor is appreciated beyond measure. A kind of maternal instinct that I didn't even know I had, seemed to kick in and I found myself tuned in to my owner's feelings and needs. There are days where she doesn't want to play with me, or go for a walk, and wont even laugh when I do my party trick of chasing my tail, which I have to say, normally brings the house down, but she didn't laugh or even smile. I found I could no longer rely on her facial expressions to know what she was feeling or thinking. Somehow the lines on her face and her eyebrows did not move as they once did, and as a dog I found this quite disconcerting.

When I see her eyes leak, that's when I know I'm needed, and right away I'm at her side. I lay my chin on her lap and look up into her wet face. She begins to stroke me and I know that this makes her feel better, so I sit still next to her and comfort my favourite human in a way only a dog can.

Micrographia - 28th April 2013

Many a Parkinson's patient will suffer from a symptom called micrographia, which to put in simple terms, indicates abnormally small cramped handwriting. Writing a list for my daughter to go grocery shopping, I looked at the very tiny handwriting which appears to be getting smaller. I was reminded of some minute writing, the likes of which I had never seen before.

Some years ago I visited Jane Austen's house which has been made into a museum, in the city of Bath, England. The house dates back to Georgian times and is where Jane Austen, the English novelist, lived for a period whilst writing works of romantic fiction that became classics and are still read and enjoyed today around the world. Apart from many of her dresses and apparel on display, naturally the stories, in her own original handwriting were behind glass cabinets. I was fascinated to see the fragile paper upon which she had once poured her thoughts and allowed her imagination to create the wonderful characters we grew to love, and now see them come to life in films. What struck me the most was how small her writing books were and that one almost needed a magnifying glass to read the miniature writing. I'm sure that Jane did not suffer micrographia, but that simply in those times, one used small sheets of paper, tiny envelopes and hence writing in general was kept very small.

My favourite book written by Jane Austen has to be 'Pride and Prejudice', and who could not be charmed by Mr Darcy, using beautiful language that sadly is no longer spoken today. The captivating character conveys love thus: "In vain I have struggled. It will not do. My feelings will not be repressed. You must allow me to tell you how ardently I admire and love you." Now that's enough to make anyone go weak at the knees. I think I was born in the wrong century!

Take a look at my latest article on The Huffington Post which addresses an issue often overlooked, but can affect a family considerably.

The amazing Jack Carroll - 29th April 2013

I have always said that comedy and a sense of humour are vital tools in handling disability or illness. I had to share with you this morning a very cool clip of a young 14 year old who despite being born with cerebral palsy, has an amazing personality and attitude to life. He doesn't let his disability stop him from doing what he loves to do best and that's making people laugh. In no way does he have us laughing at him, but whole heartedly with him, and as he says in comedy your weaknesses can be your strengths - what true and wise words from someone so young. Jack Carroll makes the most out of what he has been dealt and is an example to us all. I'm sure this young man has an incredible career ahead of him and wish him the very best of luck. He is a shining light, showing us all that even in the face of adversity, a person can strive to achieve something, bring joy and laughter to others, and accomplish a dream that clearly in Jack's case, he was destined to be a stand-up comedian. Do take a look for yourself at the extraordinary Jack Carroll on YouTube. Jack - your future looks bright indeed.

No glass slippers - 30th April 2013

There are times that I feel almost invincible, thinking if I keep my spirits high, with a sense of humour, refuse to give in and remain as positive as I can, I'll beat Parkinson's at it's sinister game. In reality, we all know if you have a bad hand of cards from the outset, no amount of bluffing can ultimately change what you hold. Good friends came over the other night, and had thoughtfully prepared a wonderful supper and feeling right at home, had within minutes filled the table with a feast fit for a king. We sat and tucked in, talked and laughed and it was great to spend time together. However, 9 pm arrived, (the witching hour in my case), and as if someone had removed my batteries, all energy seeped quickly away and left with no choice, I unwillingly surrendered to Parkinson's. Our friends knowing me well, could immediately spot the sudden tiredness that engulfed me, the frozen look on my face and a general "out of it" look that anyone suffering from Parkinson's will know exactly what I mean. It's at this point, I have no choice other than to go to bed, bringing a delightful evening all too quickly to an end. Parkinson's is a "party pooper" to put it mildly, and late evenings have become a thing of the past. At least Cinderella stayed out till midnight, where as I'm in bed by 10:00. No glass slippers around here - just good orthopaedic footwear!

May Day - 1st May 2013

In England the very first day of May is celebrated as "May Day". As the warmer weather begins, trees and flowers start to bloom; this is my favourite time of the year - not too cold and not too hot, and the beautiful blossoms adorn the countryside. Many years ago it was thought to be a season for love and romance, a time to express joy and hope after the cold winter months. "Joy" and "hope" two very important words!

Due to Parkinson's, the body doesn't always respond when we want it to. Sometimes by simply tricking the brain by focusing on something else can help to some degree. I find that loud music with an upbeat tempo can drown out irritating Parkinson's, but I doubt this would go down very well with our next door neighbours if I had the volume turned up high constantly. As for buttons; don't you just hate them? One or two are bad enough, but a cardigan involving 8 or more is simply too frustrating for words! A fellow sufferer told me a trick she's come up with when doing up buttons. She closes her eyes, and somehow this makes it a little easier. I tried her suggestion, and lo and behold she's right. Of course one can't apply this to everything. I don't think it would work when retrieving coins from my purse, particularly in a shop when someone with no understanding is impatiently waiting behind me. Finding what works for you; hearing of tricks and advice from other patients is worth a try and may help with coping and doing small difficult tasks. If you have any suggestions of your own, please do share them with me, and I will post them on this blog so that others in similar circumstances can benefit.

Parking Angel - 2nd May 2013

A close girlfriend took me out for coffee the other morning, and being housebound most of the time I had not been out for a few days, so it was a welcome break. When you can no longer remember how many years you have known someone - it means you've know each other a long time! On the way to the café, I asked if she minded us making a slight detour, stopping at a particular shop to get something I needed. Not having been to this shop for years, I wasn't even sure if it was still there, but as we drew close, sure enough the sign clearly displayed and its doors were flung open welcoming us. This particular street is very busy, a narrow two way road, and nine times out of ten, impossible to find a parking space. I don't know if any of you have a "parking angel", but I usually take mine with wherever I go. In case you don't know what I'm talking about, it's like having the ability of finding a parking space in the most unlikely of times or places - as if by magic a spot appears right where you need it, and especially useful when like myself, you can't walk too far. Right in front of the shop, miraculously a large parking space was waiting for us. I'm not sure if it was my "parking angel" or my friend's (although I forgot to ask if she has one!), but we were so grateful to have found it. We had a wonderful morning out and I thoroughly enjoyed chatting together, never short of conversation, time flew by all too quickly. I am blessed to have several close girl friends, whose friendship and continued support is something I treasure most dearly.

Life is what you make it - 3rd May 2013

You have the power to change your life, the ability is in your hands to live the best possible life you can despite ill health. I don't mean for one moment that you have the capability to cure yourself of Parkinson's, Gaucher, or other illness that to date there is no cure. However, you can make the decision to live your life to the full and embrace the good, whilst not in denial, acknowledging one's disability without allowing it power to take over your life. Living with two diseases makes me look at the world in a very different way, and sometimes I'm short of patience finding it hard listening to people gripe about small inconsequential daily matters. If only they could see what I do, they'd begin to realise and understand how small and insignificant their worries are. Maybe then they could really "live" their lives and make the most out of what they have. Don't sweat the small stuff. I would give anything to magically wake up one morning and no longer have Gaucher and Parkinson's disease, but I know this isn't going to happen. I do remain hopeful however that a cure will be found for Parkinson's, and I pin my hopes on this, which keeps me going. As much as I fight and battle through each day, to some degree I have to live in harmony with chronic disease - I have no choice. I wish you all a very good, restful and enjoyable weekend. Whatever you are doing, whoever you choose to be with - make the most of each moment and situation you find yourself in. If you have good health, don't waste this precious gift that you've been given, for I would swap with you in a heartbeat!

I would like to thank the 'Parkinson's News' who have featured two of my recent articles that appeared on The Huffington Post.

Curling toes - 5th May 2013

A frequent symptom of Parkinson's is the curling of one's toes. Apparently this toe curling is more common amongst Young Onset Parkinson's patients, occurring on the side of the body that is prominently effected. The spasms are part of dystonia which can cause the toes to curl in an uncomfortable claw-like position. My toes, curiously only on the left foot seem to have a mind of their own, and uncontrollably want to clench and curl all the time, making it jolly difficult to walk. No sooner have I attempted to straighten them; they resume their curled position once more. Wearing socks with closed shoes helps somewhat with this problem, but now the warmer weather is here, sandals make this pesky Parkinson's difficulty worse. I have yet to find a way of wearing sandals and keeping my toes straight. If any patient has some suggestions or helpful tips regarding this annoying symptom - please do let me know.

I got rid of my high heeled shoes a few years ago, realising I would not be able to wear them again. This morning I found one last pair, tucked away in the back of my wardrobe like some guilty secret. I'm afraid I haven't thrown them out yet - I didn't have the heart to. They are my last piece of evidence that I once wore stiletto high heels, and could elegant walk, or dance like anyone else. I know it sounds silly, but I can't bring myself to remove them. Maybe next week I'll come to my senses and throw out these shoes that I will never wear again.

My latest Huffington Post article is now up on-line if you'd like to take a look.

Twitter - 6th May 2013

I have a dinosaur of a phone since I cannot manage the new phones with touch screens, and my typing speed leaves much to be desired. The dexterity in my fingers and hands has been compromised due to Parkinson's, making it very difficult to use the new hi-tech equipment that so many are using and rely on today.

I have received several "Requests" to join Twitter, and I thank you all for your invitations and interest. I hope you understand, but I have to draw the line somewhere, as I spend much of my time and energy every day writing this daily blog, once a week an article for The Huffington Post, and every e-mail I receive from fellow sufferers or caregivers, I answer personally. I also do the occasionally public speaking engagement to bring greater awareness to chronic illness and in particular Gaucher and Parkinson's as I speak from personal experience. If you have been following my blog and articles, you will no doubt appreciate that I am not in the best of health (a British understatement if ever there was one!) and therefore cannot take on anything more. This is why, after some thought, I decided not to join Twitter - I'm sorry, but I cannot handle anything more. I will have to leave the Twittering to someone else!

Bad memory - 7th May 2013

A local shop I often frequent is a small family run business. The first time I went in there, the lady enquired as to why I was walking with a crutch, so I explained I have Parkinson's. Satisfied by my simple one line answer, she went ahead and served me. I happened to drop in several days later, to buy something, and she asked me again why I was walking with a crutch. I felt a moment of deja vu, but politely told her I suffer from Parkinson's (I thought it was a little too much information to add I was also born with Gaucher disease). Content, she nodded her head and asked me what I needed. The third time I went in to this particular shop, I was greeted by the same smiling lady, and she asked me "You're still walking with that crutch, aren't you better yet?" Astounded by her question, I almost felt I was in the Twilight Zone, and beginning to wonder who had the bad memory and who had Parkinson's! I told her that one didn't get better from Parkinson's, that it's a degenerative disease and unless a cure is found soon, I would only be getting worse. "That's terrible" she said, flabbergasted at this appalling information. I agreed with her that it is terrible. "You shouldn't stand for that, you should do something about it" she told me with great verve in her voice. So I began to tell her of how I had written a collection of poems that was made into a book, and hadn't stopped writing since. I told her about my daily blog, public speaking and writing for The Huffington Post. I had only dropped in there to buy some cinnamon, which should have taken me a minute or two, and instead I ended up sitting down and speaking to her for almost 40 minutes. As other customers entered the store, they were told to shush and wait. I ended up with a small attentive audience in our corner shop who now know about Parkinson's. Education is the key, and we may presume that everyone's heard of Parkinson's, but clearly not; I can see that my work is far from done.

A fabulous invention - 8th May 2013

I came across the handSteady cup whilst searching the Internet and immediately seeing its potential not only for those with Parkinson's, arthritic hands, anyone with difficulty in moving or bedridden. After trying out this fabulous British invention (only sorry I didn't think of it first!) I have to tell you that it is one of the most useful aids I have come across so far. Not only is it attractively designed so one isn't left with the feeling of drinking from a child's plastic cup, it really works. The lip of the cup has been carefully designed to prevent drips, (there is a lid included should one need further assistance) the handle is easy and comfortable to grasp, and the cup is light weight with a rubber like coaster making it non-slip. I tried it out sitting in an armchair, sitting at the table, but most impressively is how the cup works when I was in bed laying down, with just a pillow propping up my head. No spills - incredible! This cup is an absolute must for anyone with Parkinson's or who has difficulty in holding a regular cup. Looking at it's ingenious gimbal like handle I thought to myself there's no way this can go in the dishwasher. After reading the instructions on the box, much to my amazement I found that not only is it unbreakable (and let's face it if you have Parkinson's I'm sure like myself, you've broken many a glass or cup!) this incredible cup is dishwasher safe! How amazing is that? As you can tell from my enthusiasm - I am very excited about this new find. If you would like to know where you can get one, or see for yourself the video which will show far better than I can tell you, please take a moment to look at handSteady.

Do loved ones really understand? - 9th May 2013

Probably sick to death of hearing me talk, family and friends think by now they know all about Parkinson's, it's symptoms and side effects of the drugs. It's a bit like making someone sit through two thousand photos you took on your recent holiday; however enjoyable it may have been for you, no one else is really that interested, and there is only a certain amount they can stomach. But I'm talking about ill health and not holiday snaps, so as time goes by, and the disease progresses, I think they are beginning to understand how little they actually comprehend about this degenerative life altering disease. At a family luncheon last weekend, the alarm on my mobile phone went off twice during the short time we were there, reminding me to take my pills. As anyone with Parkinson's will no doubt understand the importance of taking medications on time, this precision came as a surprise to my family sitting around the table. I don't think they realise that I'm battling for my life. Each day I strive to keep positive, as active as possible, and refuse to let my disabilities get the better of me. Without my fighting spirit, I'd be up the proverbial creek without a paddle!

I'm in contact with a number of well established authors, and I asked them, "When is one considered an 'author'"? The answer I received came back loud and clear. If people are interested in what you have to say, are buying your books, reading your blog and articles - you can safely take on the title of "author". When my first book was published in 2011 and I started writing a daily blog, I had a small number of readers/followers, but to my astonishment now in 2013, family and friends are unaware, that thousands around the world in over 70 countries, are reading my work. All the effort and hard work I have put into this campaign is not completely understood by family and friends, and yet the wider public 'get it'. How strange that those closest to me, see only who I once was, and cannot adjust to a new picture. Maybe love gets in the way, and it's simply too painful for those who know me personally to grasp what is happening to me, and not through lack of care, but they just can't hear any more.

A fellow author, Jill Sadowsky, who is a true inspiration to me, has become a good friend. A woman of great courage and strength, she also carries a message to the world and like me, is on a crusade to bring greater awareness whilst offering support to those in similar circumstances. Jill also writes a daily blog, and I would like to share with you, a line that literally made me stop in my tracks. The words written by her late son, are so powerful and poignant, I think anyone suffering ill health can appreciate how this special young man who was loved dearly by his family must have suffered.

"Anyone who thinks that dying is the worst thing that can happen in the world, doesn't know the first thing about life." (Taken from "David's Story" written by Jill Sadowsky.)

No energy - 10th May 2013

Of late, my energy levels have been so low, I literally feel as though I am fading away. Fatigue is a symptom not only of Parkinson's but Gaucher too, so I am endowed with a double dose. How lucky am I? It is difficult to describe the severity and extent of this tiredness, for the word 'fatigue', 'exhaustion' or 'depleted' don't seem strong enough to fully express what I am experiencing. Sometimes I can barely speak, and feel so bad, I can hardly function at all. Well meaning and caring people keep telling me to not do so much; rest, have a nap, but this scarcely helps and does not solve the problem. Long term fatigue takes its toll and cannot be resolved easily. Fatigue in Parkinson's can be caused or made worse by slow movement, muscle stiffness and when medications during the day start to wear off. These fluctuations effect mobility and often I find the best time for me is first thing in the morning, so I try to take advantage of this and get the things done that I need to, but doing too much - again leads to fatigue, so pacing myself is crucial. There is also muscle fatigue, painful cramping, tremors and shaking which all put stress on muscles making them work very hard. Who needs a membership to a gym when you have your own private work out from Parkinson's for free? It's like a vicious circle - there is no end.

Take a look at my latest article on The Huffington Post.

I wish you all good health and a wonderful relaxing weekend.

What day is today? - 12th May 2013

I had a good laugh with a friend the other day, as we talked about not knowing what day it is. Now if she happens to be reading this, she'll be thinking "Oh no, Elaine's writing about me". Don't worry \- your identity remains secret! When one doesn't work and is housebound, the days can run into one another, and on occasion, I must admit, I don't know what day of the week it is. Apparently I am not alone, as I found others have the same difficulty, but without the excuse of having Parkinson's and being at home with no particular schedule. Maybe that's why I write a daily blog; just so I'll know what day it is! No, I only jest. My wrist watch has the date on it, but with poor eyesight, I can no longer see the date. Thank goodness the date is a little larger and clearer on my mobile phone and computer. In a local retirement home, I noticed in the day room, on a large board, the day of the week, date, month and year are clearly displayed. The staff pay attention to change this board every morning which I'm sure is of great help to the residents. The hospital I attend have large wall clocks in each ward, but no date. Perhaps if and when they need to replace these clocks, they could purchase something that not only tells the time but the date too. Being hospitalised, and completely thrown out of one's normal routine, understandably one hasn't a clue what day it is, and often without my watch, phone or computer, I am quite lost, especially if it's a long hospital stay.

Some years ago when my mother was being assessed and finally diagnosed with dementia, one of the questions asked was: "What day is today?" Knowing full well that my mother didn't know the answer, I had to smile at her ingenious answer that she said with a smile and a humorous lilt to her voice; "It's the day after yesterday and the day before tomorrow!" This didn't fool the psychologist however, as she had heard many a creative answer before, but she did give my mother a big smile at her resourcefulness. Zero for the wrong answer but 10 out of 10 for effort!

Marking the years - 13th May 2013

As each year passes by, birthdays come and go, life somehow seems to speed up. When we were children, with excitement we couldn't wait for each birthday, growing older, reaching one's teens and then early twenties. The anticipation of being independent and to leave one's childhood behind are grasped all too quickly. Now later in life, we don't make a fuss of every birthday, however, when it's a special round number, such as 40, 50, 60 or more, I think it it's appropriate and even necessary to mark the occasion, sharing in celebrating, not the fact of growing older, but the fact you were born. This gives all those around you, family and friends, the opportunity of letting you know how special and important you are in their lives. It's funny how some people count the number of years they've lived in a particular house, stayed in a certain job, or what I've encountered recently, how many years since diagnosis of Parkinson's! We all have anniversaries for something that bares personal importance and significance.

So if you have a special birthday, don't let the number of years deter you, celebrate with full gusto, enjoy the moment and live with intention!

A moment of despair - 14th May 2013

This poem was written in a moment of despair during the night when my body racked with pain; I was unable to sleep or find a comfortable position for a moment's relief. This is what Parkinson's feels like when it's at its worst. Despite my devoted husband soundly sleeping laying by my side, I couldn't have felt more alone in the world. Most patients suffering PD wont mention "down moments" like this, let alone write for the world to read. I therefore felt it important to share this poem with you today, not with the intention of making you sad or depressed, but merely to illustrate how this degenerative disease slowly but surely steals away one's life and what goes through a sufferers mind in desperate moments.

A Beacon

I once was a shining beacon,

For all the ships at sea.

My light was bright and ever shone,

A full life awaited me.

But now my light is fading,

It flickers and splutters by day,

At night can barely be seen,

As it meekly fades away.

A tiny ember where a flame once burst,

Sadly now all that remains to see,

One day a gust of wind will blow,

Snuff out the light and set me free.

Written by Elaine Benton© 2013

Slow like a tortoise - 15th May 2013

Years ago I used to be a very fast typist, but as Parkinson's progresses, my speed is slowing down considerably. My right arm has become extremely painful for the last few days, making it even harder than usual to accomplish anything. Whether this is down to Parkinson's or Gaucher - who knows! However, it has rendered me to typing with one finger on my left hand, which is the side of my body most affected by Parkinson's. Doing things with just one hand is very difficult, and time consuming, but like the famous tale of the tortoise and the hare, I may be slow, but I'll get there in the end. It's not my life that is complicated, its just my health that is complex. Anyone suffering more than one disease will no doubt find that there are many symptoms that overlap, and often cloud the issue, making it hard to distinguish what exactly is manifesting itself. I feel like a car that is long over due for a good service and overhaul. I wish it were that easy. When my car had a puncture, it was fixed that same day, old worn tyres were replaced with new ones, when a light bulb goes, a new one is put in its place. At the back of the garage there was a sign that said "Body Workshop" - I smiled to myself, imagining for one moment some space age scenario where you could walk into a machine and at a flip of a switch all one's medical problems would be sorted. Now how cool would that be? But from all the banging and noise emanating from the "Body Workshop" I was quickly brought back to reality and it was clear that only cars were behind those closed doors. I will bid you farewell for today, as I can't write any more - my one finger is getting tired of typing!

Meds on time - 16th May 2013

Taking one's medicines on time is vitally important with Parkinson's disease. Gaucher disease, treated by an enzyme replacement therapy via infusion is very different and can be delayed by a few days, with no ill effects to the patient, as it works in a very way from Parkinson's medications. I always take a small pill box with me in my handbag, containing the pills I will need whilst out, plus extra just in case we end up staying later than expected. When hospitalised, it is crucial to continue one's regimen, but this can sometimes prove problematic. You may find yourself in hospital regarding a completely different health issue, and end up in a ward, for instance the orthopaedic or oncology department, where the staff, as wonderful as they may be, are not specialists in Parkinson's and don't necessarily understand how vital it is to take PD medications on time. Most know the crucial timing of diabetic meds, but Parkinson's medications if not taken at the right time can be detrimental, and set one back considerably. I have a sheet written out with all my pills, dosage and time of day to be taken. Taking this with to hospital, I can attach it to my chart at the end of my bed and hand an extra copy to the doctor to put in my file.

In America the Parkinson's Foundation has created an entire kit in a handy bag for one's medications, along with pads especially for you to fill in details of your pills. They also include a metal bracelet with "Parkinson Disease Alert" written on it, for there are many patients who have difficulty in talking, so by wearing this, hospital staff should be alerted to your special needs. However, if one is required to have an X-ray, MRI, any scan or operation, we all know that all jewellery etc. must be removed, so my suggestion to the Parkinson's Foundation is; maybe a plastic wrist band, the type of which one normally wears in hospital, should be added to this "Kit" with one's name and "Parkinson patient" written on it so that in hospital this doesn't have to be removed.

Loss of Independence - 17th May 2013

One of the hardest things to accept is the loss of independence when chronically ill. I have never liked asking for help, and now sometimes left with no choice, the words almost choke me if I need to ask for assistance. It can be some small errand that has been waiting and put off time and again, simply because I can't see to it myself. Simply buying a birthday card and getting to the post office to send it, requires so much organising, that I have, much to the apologies to my family, been reduced to sending e-mail greetings instead. Having forgotten to write an item on the grocery list for my daughter, I might find I'm missing one ingredient, but stuck and unable to get to any shop, it's frustrating, and I have to adjust a recipe or make do with what is in the pantry. It's often the small trivial things that drive me to distraction. This morning is a prime example; my husband dressed me before he left for work, and my daughter disappeared like a lightening bolt as she was running late, so before I knew it I was all alone in the house (apart from our dog). Although our dog assists me in many ways, there are limitations even to her abilities. Once everyone had left, I suddenly realised I hadn't brushed my hair, and my arm still very painful, I was unable to manage this very basic mundane task myself. So here I sit, typing with one finger on my rigid left hand, with a mass of un-brushed hair, resembling someone who has been pulled through a hedge backwards. I only hope no body drops in unexpectedly today!

It is Friday once again and the weekend is upon us. I haven't been out the entire week, so from someone who has cabin fever and shipwrecked at home alone - it's over and out from me!

Domino effect - 19th May 2013

It's all a matter of how you look at life and see everything. Two people can be in the same situation but both have very different perspectives. Being able to look at the glass half full instead of half empty isn't always easy to do, but if you make a concerted effort and change your mind-set, determined to push negativity away and replace it with positive thoughts. Like a domino effect or the ripples on a pond that circle ever outward, you and everything surrounding will be effected. Ultimately this makes it easier to cope with the harsh things we often have to deal with in life. My husband has a saying; "problems don't exist, only solutions exist". Whenever we have come up against an obstacle in life, we always find a way around it. Whether you suffer from ill health or not, having a positive attitude can only enrich one's character and give you the tools to cope with anything thrown your way. I am constantly challenged as my health deteriorates, and although there are occasions when I feel down, the majority of the time I am still able to count my blessings and see the silver lining in all this chaos. So if you're feeling down in the dumps, make an assertive effort to be optimistic and once you've knocked that first domino down - you'll find the rest will follow.

Michael J. Fox returns - 20th May 2013

Amazingly Michael J. Fox is returning to our TV screens in NBC's new series this coming fall. How incredible that Michael has managed to return to work, which he puts partially down to the new medication regime he is on which includes Amantadine, originally created for the elderly to ward off flu. As with many drugs that are initially created for one purpose, sometimes end up being more effective used for another illness. Watching the trailer, I had to laugh as identifying with Michael's character, you can't help but smile, seeing the funny side of life. Not that there's anything funny about having Pakinson's, but as I've mentioned so many times before, it's all a matter of attitude and how you perceive your life. I hope this series will be a success and an eye opener to those who do not fully understand the difficulties encountered daily by anyone suffering from Parkinson's. As for anyone like myself, it's like watching a little piece of my own life, relating to the family interactions and antics at home with a little dark humour thrown in for good measure. Good luck Michael on your new show. We'll all be watching!

How to clean the floor - 21st May 2013

When ever I come across some useful tip or advice, I always share and pass it on. Today for anyone with Parkinson's I have a non-conventional way to clean your kitchen floor with ease. You will need the following items:

1 glass bottle of beer (any beer will do)

1 bucket of water and floor cleaning liquid

1 mop and 1 willing daughter

Firstly make sure your hands are wet, and that it's almost time for your next pill, ensuring the maximum amount of shaking. Take one bottle of beer in your weakest hand, and let Parkinson's do the rest. You'd be amazed at how many shards of sharp glass splatter across the floor from dropping one small bottle of beer. This is where the remainder of the abovementioned items are required. Hearing the glass smash (which is a fairly common noise in our house - thanks to Parkinson's) my daughter came rushing to the scene. Getting the dog out into the garden was our priority as she is rather partial to a drop of beer. Maybe she's a distant relative of Beasley who played the dog in the film "Turner & Hooch" with Tom Hanks. But seriously our dog doesn't drink beer, at least not when we're around. Concerned, we didn't want her getting any glass shards in her paws. Within minutes my daughter had the situation in hand and we had a clean kitchen floor. One less bottle of beer, but a sparkling tiled floor! As my husband said, there are no problems, only solutions!

Everyone needs a hug - 22nd May 2013

I think everyone needs a hug now and then from someone who really cares. Sometimes when there's nothing to say, no words of condolence or sympathy come to mind, a hug can express what you would like to convey. A seemingly simple action, but one that communicates empathy in a heartfelt way. At a local retirement home, I noticed how the staff in the 24 hour care ward, understood and had clearly been trained with regards to the importance of human touch. Whilst my mother was alive, I was a frequent visitor and over a long period I got to know the wonderful staff and the residents in my mother's ward. Everyone was someone's mother or father, and each had lead a life, brought up a family and were they able to communicate, I'm quite sure there would have been some fascinating stories to tell. I would say hello and greet each person, and it would often take me half an hour from entering the ward until I finally got to sit next to my mother. There was one gentleman with a cheery smile on his face who seemed to love to wave at anyone who passed by, and was delighted if you waved back. A lady who sat with a sullen face, was transformed if you got up close and looked straight into her eyes and gave her a warm smile; suddenly her whole face would light up and she would smile back. My mother had dementia and when visiting, I'm not sure she knew who I was, but upon hugging her, I know she was reassured that I was someone who loved her.

Honesty - 23rd May 2013

Some find honesty refreshing, whilst others may cringe, finding it a little too much to bare. Being totally honest means telling the entire truth, revealing oneself and letting down any barriers or guards. At first you may feel vulnerable and worried what others think. But you can rest assured, whatever you are thinking or feeling, someone else is experiencing the exact same thing. By being open and speaking out, you enable others to come forth and it's a feeling of liberation. Keeping one's health issues secret, whether you are in denial or simply a very private person, will not ease your situation. I'm not suggesting for one moment that you tell all and sundry or alert the media, but to your family, close friends and most importantly your doctor - honesty is the best policy! I was in two minds whether to share my poem "Beacon" (blog written on 14th May) which as I explained was written in a moment of despair. Fortunately I don't have too many of these low moments, but after giving it some serious thought, I felt compelled to put it in my blog. I received numerous responses via e-mail, and concerned phone calls from family and friends (sorry to have worried you!) but one thing it proved - was that I am not alone. Do you know how many of you out there have the same thoughts on occasion? Suffering Parkinson's or any degenerative disease is hard, and putting a brave face on, keeping positive and cheerful isn't possible 24/7. There are bound to be occasions when one feels down and this is only natural. The important thing is that these are fleeting, and that you are able to bounce back.

Don't waste a moment - 24th May 2013

One thing we all share in common and cannot escape without exception, is that everyone eventually dies, but I wonder how many actually really "live". Living life to the full, is reaching your potential and being all you can be; not to be afraid of change, taking a chance now and then, to step out of your comfort zone and not let any opportunity pass you by. I would hate to look back on my life and have regrets, and think "if only". Many years ago when I was young and able to work, I remember my boss at the time commenting on the fact that every day when he arrived at the office, he was greeted by my smiling face, which set the tone for the day. A small thing like this, simply welcoming him with a smile made all the difference to my boss's morning. Smiling at someone is a little contagious, and nine times out of ten, you'll find if you smile at a person, they will smile back at you. Can you say with hand on heart that you embrace your life and LIVE? If not, make a change and start right now. You've not a moment to lose, and it's never too late to begin to grasp life in both hands, shake things up and make the most of what you have.

To bring home this point of making the most out of a bad situation and not wasting an opportunity, my latest article on The Huffington Post illustrates exactly what I'm trying to get across to you.

Have a good weekend and seize the moment.

Why is today special? - 26th May 2013

What does John Wayne, Stevie Nicks, Helena Bonham Carter and one of my nephews have in common with me? This is not a trick question, and thankfully Parkinson is not the answer. I'm not going to drive you crazy trying to work it out. What we share, is the same birthday - the 26th May, be it different years. It's been a long journey and I can hardly believe that I have made it to my 50th birthday. Although my body feels like it's ancient and falling apart at the seams, inside my spirit remains strong and youthful. Within this failing shell, is a vibrant young woman who wants to dance the night away in the arms of her husband, run along the beach at the water's edge, stay up all night and watch the sunrise, jump carefree into a swimming pool, take a long walk in the forest with the dog, or go on a mammoth shopping spree with her daughter. These simple pleasures in life are no longer within my reach, but I am content and accept my circumstances and limitations. I may have lost many things, but I am lucky enough to be surrounded by loving caring family and friends, whose constant unwavering support keep me going. I don't know what the coming year holds in store for me, but I think my journey is far from over. Maybe this is merely the beginning of another chapter in my life. I have been writing this daily blog since September 2011, which is now read in over 70 countries around the world. I shall continue to take you, my readers, along with me, so stay with me for you never know where it may lead. Surrounded by pink roses from my darling, and the warmth and love of those around me I definitely feel in the pink today. I'm feeling good!

Turning 50 - 27th May 2013

Yesterday it was my 50th birthday, and I had a wonderful day, thanks to all the efforts of my darling husband and daughter. I wont tell you what I had for breakfast, the most important meal of the day (so they say), for there were far too many calories to mention, so thank goodness a birthday comes but once a year! "That's not fair" I can hear you muttering, "what did she have for breakfast?" Now I've got you wondering what breakfast could be so bad, yet deliciously naughty, it deserves special place on one's birthday breakfast menu; I'll spill the beans. My family made me pancakes topped with mascarpone cheese and fresh strawberries. Breakfast doesn't get much better than this! Turning 50, although a significant point in one's life, doesn't worry or phase me. I have never attached much importance to the number of years - a person is as young or as old as they feel inside. Although suffering two chronic diseases has aged my body considerably, inside I'm still the fun young at heart person I once was. If you can see past my poor posture and shuffling walk, the masking that conceals my expression, and when tired slow speech which is hindered as if someone has turned my volume down, you'll find I'm here inside. Don't be afraid, or turn away in sadness, but celebrate life with me. I had a fabulous birthday, surrounded by close ones, people I love and who have played a great part in my life, whether they are aware of it or not. Thank you everyone for your good wishes, and to all those who made my 50th birthday a truly memorable day. arias tunes

Being inspired - 28th May 2013

Sitting having coffee with our charming new next door neighbours one morning, we chatted about what we wanted to do with our lives. I explained about my writing, and how wherever I go I carry with me a notebook and pen. An extremely interesting lady, we ended up having a wonderful stimulating talk, which suddenly gave me inspiration, and as she went to see to her baby, I quickly got out my pen and pad and hurriedly scribbled down my thoughts before they disappeared into oblivion. So I've found a delightful muse and friends right next door. Having good neighbours can make all the difference and although it's a matter of luck to some extent, somehow I get the feeling that something more than fate brought us together. We come from very different backgrounds, but that's what makes life interesting. It would be awfully boring if we were all the same. I was brought up in a household where the saying "Waste not, want not" went hand in hand with "May I leave the table please?" These outdated English phrases represent an era that seems to have disappeared into the archives. Where did good manners go? Did 'etiquette' leave the building and forget to return. I often feel out of place, as if I'm living in the wrong century. Don't get me wrong, I'm all for progress and improving quality of life, the Internet having made the world a far smaller place giving us the ability to be in contact with others across the globe, the potential to easily travel to far off places, not to mention the great advancements made in the medical field. However, sometimes I wish for a slower pace of life, a less complicated, non computerised simple world, but then how would I speak to you every day through my blog and be an effective advocate for Gaucher and Parkinson's without the aid of modern technology. Its a conundrum!

Warning - pay attention! - 29th May 2013

I have spoken before about paying close attention to new medicines prescribed, to take along with your regular regimen of Parkinson's tablets. It's a very delicate balancing act finding the right medications, dosage, best intervals between meds and times of day to take them, as anyone suffering Parkinson's will well know.

Please pay attention, for a doctor can easily prescribe a pill, patch or even a harmless sounding cream to treat some additional health issue you may have, forgetting to take into account the effect this new addition will have in relation to your Parkinson's medications. Since taking, what I thought was a harmless travel pill a few years ago, where I almost passed out, felt seriously ill for several hours afterwards, do I now realise the importance of reading thoroughly the paper inside the box of pills. It was printed quite clearly that this pill should not be taken if one is on medications for Parkinson's.

I don't hold anyone to blame, it is simply down to human error, which we are all guilty of now and then. Don't rely solely on the assumption that the doctor has checked if there are any adverse interactions regarding what you are already taking. Since then I have become much more vigilant, reading thoroughly about any new medication prescribed, making sure that all the drugs are compatible with each other. Serious side effects can occur and really mess one up. It can take quite a few days for the new medicine if incompatible to get out of your system. So please take it from someone who has personal experience with this; make sure YOU check whatever new tablets, patches or creams you are prescribed, no matter how simple or harmless they appear. Before taking anything new, ensure it is suitable and wont clash with your regular Parkinson's medications.

My life is an open book - 30th May 2013

Leading a private life is what most people prefer, but I find myself now exposed and thrown somewhat out there unintentionally. As uncomfortable as it was at first, I quickly realised that allowing fellow sufferers, care givers and hopefully catching the attention of the general public making them more aware of Parkinson's, my life consequently became an open book. I'm no Shakespeare, but more of a Beatrice Potter or Enid Blyton. No complicated prose, but simple language spoken from personal experience and straight from my heart.

We were invited to a family function, and upon receiving the invitation, I promptly wrote it in my diary along with the time. How I managed to write the wrong time down, I cannot explain. I'd like to pass the buck, put it down to Parkinson's and let it take the blame, for we arrived there at 12:00, when in fact the function started at 13:30. My husband true to his nature took it in his stride and with good humour, but I'll never live this one down. The manager was very sweet and understanding, offered us coffee and juice and seated us near a window so that we could enjoy the stunning view of mountains and forests. As if this was not enough to put me to shame, I had forgotten to remove the price tag from a new top I was wearing. Thankfully a relative came up to me and unobtrusively popped the price tag inside so that no one would see. I don't know if anyone else had noticed, but quite frankly, I'm passed worrying about such trivial matters.

With so much to contend with each day, I no longer have the luxury of time to ponder inconsequential things. Time and again, I hear "don't sweat the small stuff" and this couldn't be more true. So what if your man leaves the toilet the seat up, drops his dirty washing on the floor, that your family believe there's a house elf who magically clears up after them - these are admittedly annoying, but in the scope of all things, do they really matter? If the house isn't' spotlessly clean, I can assure you the 'hygiene police' wont be knocking down your door. Relax, take a step back and look at the bigger picture. Someone very dear to me wrote such heartwarming words for my birthday - bringing tears to my eyes, capturing the very essence of life, and encapsulating what is really important, emphasizing how very blessed I am. Yes I have Gaucher and Parkinson's disease, but I have so much more, I'm one very lucky lady!

P is for Parkinson - 31st May 2013

P is for "Parkinson's, what else could it be?"

A is for "Appreciate the good in all you see"

R is for "Refusing to give up the fight"

K is for "Kindness when hearing your plight"

I is for "If only they'd hurry and a cure were in sight"

N is for "None understand unless in my shoes, that's for sure"

S is for "Sorry my husband has to deal with so much more"

O is for "Oops, did I drop that and make such a mess?"

N is for "Never ever give up hope - I'm an optimist I confess!"

Botox be banished - 2nd June 2013

Anyone like myself born with a chronic disease, has more than likely had their fair share of operations and procedures. I would therefore never choose to have surgery, and wonder what goes through the minds of those who are blessed with good health, yet don't think twice about having plastic surgery, when in fact nothing is medically wrong.

Plastic or elective surgery has never appealed to me, and I find it hard to understand why anyone would want extra fat injected into their lips or have Botox injections. I saw a lady who could hardly smile or make any facial expressions, her skin stretched so tight, not a wrinkle or line in sight. Looking like some aged Barbie doll, she may as well have been wearing a neon sign above her head telling everyone how she longed to be young again. Taking a closer look at her expressionless face, it suddenly occurred to me that she had unwittingly created a Parkinson's like mask, which I'm only too familiar with. Why would anyone want to look this way? If you have Parkinson's and suffer from "masking" - who needs Botox?

Painful muscles - 3rd June 2013

A very common symptom of Parkinson's, is pain one can experience, particularly in the thigh muscles. When these muscles are over worked, great stress is put upon them, and the muscle can literally seize. I had his happen a number of times, but once my left thigh muscle (which is the side most effected) was so painful that it had gone into spasm. No amount of hot showers or painkillers seemed to help and I was very lucky that my sister-in-law not only is qualified in teaching Women's Yoga, but more importantly for me, she is trained in Thai massage (deep tissue massage). She worked on this particular muscle for over an hour, and told me to stay laying down on the bed and rest after she'd finished. Her hands must have been exhausted, for she really worked hard on my leg, getting deep down into the muscle. After she left, I fell asleep, and awoke a couple of hours later, finding the pain had finally gone. I had suffered for almost two weeks prior to her visit and was so grateful and relieved. Massage may not work for everyone when a problem like this arises, but it's worth a try and you have nothing to lose. Some people swear by acupuncture; I have never tried this, so have no personal experience to share with you. If you are interested there is a book entitled "The Book of Exercise and Yoga for those with Parkinson's Disease" by Lori Newell (using movement and meditation to manage symptoms). Each patient is different and it's a matter of finding what works for you.

What do we leave behind? - 4th June 2013

It always interests me as to what people remember about a person once they have passed on. Leaving a legacy and wonderful memories that loved ones will remember and recount on numerous occasions has to be what we all hope for. I had an aunt who passed some years ago, and when I think of her, the first things that come to mind are her zest for life, a great sense of fun and her huge contagious laugh. I think we'd all like to be remembered fondly like this.

When we moved house a few months ago, we thought it would be fun to put our hands in the wet cement, a sort of permanent memento that would stay, but somehow this idea got forgotten, and with everything finished, there is no place to leave our mark. However our dog must have had the same idea, as the other day we noticed a very distinct doggy paw print in a small piece of cement near a manhole cover. Talk about "marking one's territory" or is she simply making sure we'll always remember her? OK, I'll admit, she just happened to walk on the cement when it wasn't quite dry yet, but her print is there to stay.

Talking of "staying put", last week on a visit to the hospital, we patiently waited four hours to be seen by a particular doctor. Yes FOUR hours on uncomfortable waiting room chairs!!! Do I have a patient husband or what? Not one moan, grumble or complaint!!! He is truly amazing! If you want to see the best doctor, who is in great demand, one has to be patient for any emergency cases are naturally and quite rightly seen to first. After waiting all that time, my appointment was quickly over in a few minutes and we finally left there, arriving home very tired. There's nothing more tiring than waiting around in a hospital.

Bravery - 5th June 2013

I overheard someone saying "how brave Elaine is", and I was stunned at her remark. I have never seen myself as "brave", simply practical, optimistic, hopefully encouraging others through my determination and strength of spirit to lead the best possible life they can despite suffering chronic disease. Bravery to me is something very different.

A firefighter who rescues people from a burning building and certain death, is not phased by the personal danger he faces. Engulfed in flames, his sole mission to fearlessly rescue whoever is trapped inside and come out alive. Ambulance teams who arrive on a scene of an emergency, go straight into action, despite the horrifying circumstances they may meet. Without hesitation they get to work quickly administering to the injured and getting them safely to the nearest hospital. A surgeon who has been operating for hours and suddenly faced with a patient experiencing serious complications; has to think carefully but quickly, for someone's life is in his hands. Every decision he makes is crucial. These people are most definitely brave and are heroes.

But there are different types of bravery, and one form of bravery that may not sound quite so dramatic, but requires in my mind, long term commitment and unconditional love is to stay the course and take care of someone. Being a caregiver who unselfishly gives of themselves every day without a second thought, is indeed brave in my eyes. So to all your caregivers out there - your bravery doesn't go unnoticed - you are very much acknowledged and appreciated.

Concentrate on the present - 6th June 2013

Instead of dwelling on all the things you can no longer do - concentrate on what you can do. This all goes back to what I always say, look at the glass half full, not half empty. Ask yourself what are you passionate about, what do you enjoy and what can you achieve in your present condition? However circumstances may have changed your life due to Parkinson's or another chronic illness, new hobbies or activities can replace the things you used to do. Don't look at this shift in a negative light, but instead as a positive great opportunity to experience new pursuits that you may never have dreamt of doing. Clearly climbing Mount Kilimanjaro is probably out, or taking part in a marathon not possible, and perish the thought of bungee jumping, but with a little thought you can come up with something that you'll be able to do, and that brings you enjoyment.

Our garden has become my sanctuary, and I spend quite a lot of time out there. My husband built raised flower beds especially for me, so no bending necessary, and although I don't profess to be a "gardener", I thoroughly enjoy pottering around out there. It's therapeutic in a sense, and every night I diligently water my plants, and take pleasure when a new flower opens up, or fresh leaves appear. It is far from a manicured garden, but rather more of an enchanted walled garden, with a mass of colour and greenery spilling out of the beds and climbing the walls. This activity takes little dexterity - so perfect for Parkinson's, and if unsteady, I can always sit on a chair next to the raised flower beds. Gardening may not be everyone's cup of tea, but I am using this as an example of something I'm able to do, enjoy and get pleasure from. I hope that you are able to find a hobby that suites you.

A Sporting Chance - 7th June 2013

Sports are a healthy and enjoyable addition to everyone's life. Just because someone is in a wheelchair and disabled, does not mean they can't participate in sporting events, or have a routine of exercise they adhere to. The Paralympics in England last year were an excellent example; despite adversity and physical limitations, sportsmen and women from around the world showed us true courage and determination, not to mention a great deal of skill.

A friend of mine who is a keen golfer, met a charming man on the golf course who was in an electric wheelchair, which allowed him at the touch of a button, to virtually stand up, enabling him to play a sport he loves. Being the adorable friendly vivacious person she is, without a second thought, my friend asked in golfing terms, "What is your handicap?" As soon as she spoke, she realised that possibly her words were not wisely chosen, and hoped he was not offended, at what had been a genuine question. "Please don't tell me it's your wheelchair" she quickly added with humour hoping he was not insulted. "My handicap is 24" he replied, giving her a big smile. Clearly this confident man has a sense of humour and great positive attitude making him way ahead of the game!

Pink for Parkinson's - 9 June 2013

The phrase, "being in the pink" is generally used when referring to being in good health. Therefore "being in the pink" is something most people aim for. A little boy in the pharmacy told me his grandfather had "Pinkinson's"! and so began my fondness of this colour. I was horrified to learn that in marking Parkinson's Awareness Day back in April, that many support groups wore grey T-shirts showing unity in our cause. I'm sorry, but grey seems such a dull colour to represent Parkinson's. I know that pink is generally the colour used to signify breast cancer, but I'm sure together we can share this colour. I seemed to have adopted the colour pink recently as its cheerful brightness brings a smile to my face. My husband tolerantly puts up with this change in style, although I have refrained from "pinking" our bedroom, at least for now anyway! I had to laugh when I saw a music video about a pink tractor. I hope this clip will make you smile too!

Being ill is a full time job - 10th June 2013

Chronic illness can literally take over your life and given half the chance, submerge any sense of normality. A young and rather inexperienced social worker once asked me "What do you do at home all day?" Stunned by her question, it took me a second or two to gather my thoughts before I answered. I realised that as a healthy young able bodied person she probably didn't understand, how simply getting out of bed, washing, dressing and having breakfast, which most people think nothing about, for anyone suffering ill health, these mundane daily activities are major. It takes me far longer and much more effort is expended in these relatively simple acts. By the time I have finished breakfast I am already exhausted. I have various physiotherapy exercises that I try to adhere to each day, as any form of exercise or movement is extremely important when suffering Parkinson's, and this too takes time out of my day. I am supposed to rest each afternoon, which all depends on Parkinson, whether it will allow me to lay down and sleep a while, or if it decides to drive me to distraction. Doctor's appointments, check-ups, tests, ensuring I never run out of PD medications, I am in constant contact with our family doctor and pharmacy and simply taking care of myself to the best of my ability is a full time job. Let's be brutally honest, getting through each day with one's humour intact and a smile on one's face is in itself a huge accomplishment.

The social worker began to get the picture, and then asked if I did anything else to occupy my mind. I told her that I write, "That's very good" she said in a patronizing voice as if praising a child. It was at this point I thought the young woman needed to hear exactly what I have been doing with my time. I showed her the books I've written, my daily blog that is read in over 70 countries around the world, articles I write once a week for The Huffington Post which has a readership of 1.2 million per month, told her of my campaign and public speaking engagements as an advocate for Gaucher and Parkinson's disease. By this time her eyes were as wide as saucers, her mouth dropped open, and the tone in her voice changed considerably. She now knew how I spent my days. Being ill is literally a full time job, especially when you're stubborn like me and wont give in. I refuse to let Parkinson's get the better of me, I'll fight with every fiber of my being! By the way in case you're wondering if this particular social worker ever returned; I've never seen or heard from her since!

Music to my ears - 11th June 2013

I have always loved music, although I must admit I don't play an instrument and my singing is probably best left to the shower, where hopefully no one is exposed to any tortuous sounds emanating from the room in the house with the best acoustics. Music can be highly therapeutic, and lift the spirits. The opera is something you either love or hate - there appears to be no in-between. I happen to love the opera, and my favourite is "La Traviata". I was fortunate enough to be taken the other night to see a wonderful performance. Knowing that curtains went up at 8pm, and that this opera is 3 1/2 hours long, I knew it was going to be a very late night for me. My neurologist suggested to me on a previous visit, that if we had somewhere important to go at night, to keep me going, I could take an extra half a Dopamine tablet around 9pm.

If you have a function that is late at night, ask your doctor what you can take to help you through. To ensure a successful evening, I also made sure I did nothing strenuous that day, and had a long afternoon rest. We took my wheelchair with as just walking from the car to the front entrance of the Opera House, and then standing around until they open the doors and finally making it to our seats is too much walking and standing for me. There are ramps and lifts at the Opera House and places especially for wheelchairs, so I remained in my comfortable chair, and my husband was able to sit next to me in a regular chair. They get 10 out of 10 for being disabled friendly.

I thoroughly enjoyed the performance, that literally brought tears to my eyes listening to Violetta profess her love to Alfredo whilst in a tight embrace. What wonderful powerful voices that literally ran shivers down my spine. The tragic story ends dramatically, as Violetta dies draped in Alfredo's arms. A simply wonderful evening, and although I'm rather tired this morning, it was well worth it. Today I will rest. This is one more thing I can strike off my "pink list".

Ghost writer - 12th June 2013

I am part way through writing a novel and somehow just don't seem to have the required time to dedicate to this half finished project. I hate leaving things half done, or not completed as they should be - it's not in my nature. I am kept so busy with writing regarding advocating Gaucher and Parkinson's disease that I sometimes wonder if I'll ever finish my novel. Here's a strange thought; imagine leaving this world with a written piece of work unfinished! I would have to come back as a ghost to finish what I started - which brings a new meaning to the term 'ghost writer'! But seriously I have no intention of going anywhere, I've simply got too much left to do.

Parkinson's is a journey of self discovery, and although I am fundamentally still "me", I have changed in so many ways. I am not just talking about my shuffling gait, or inability to participate in certain activities, or the "masking" that hides all signs of emotion, but on a much deeper level. In a sense, as absurd as it may sound, Parkinson's has set me free in an emotional sense. When I realised soon after diagnosis how many patients "hide in the closet" from denial or simply fear of the unknown and what lays head of them, I knew this is where I could make a difference and stepping up to the mark, I have made if my mission to inform and educate those who know nothing about Parkinson's and to offer support to fellow sufferers in need. I also found quite quickly how the role of caregiver is one of the hardest jobs and often are not acknowledged; unless you've been in these shoes.

This is the second year I have taken part in a programme run by the university for first year students in medical school, where they get to meet and talk with chronic patients. Lucky me, I fit into this category, but I am more than willing to talk with these eager youngsters who will be the doctors of the future. I think this is an excellent addition to the syllabus, allowing the students personal insight from a chronic patient's perspective.

Does Parkinson's spark creativity? - 13th June 2013

I have been in contact with many fellow sufferers, most of whom seem to have adopted a new hobby or skill, some paint, others write, and there are a few I've come across that do the most amazing woodwork. It's almost as if Parkinson's takes away some of our abilities forcing us to make a change in career or lifestyle, often leading to some kind of occupational therapy that is creative by nature.

I have a friend who has Parkinson's and she gathers unwanted old wooden toys or broken furniture, and either restores them to their former glory giving them a new lease on life, or with great imagination and skill transforms the wood into something new and wonderful. I love the idea of recycling and giving life to something old or broken. She manages to work a couple of hours in her studio each day and has created some astounding beautiful handiwork. The picture here is one of the Dragonflies that Jackie has created. If you look closely, you may be able to see what she has made them from. Brightly coloured Dragonflies have been attached to the fences of her local school, transforming an ordinary fence into a cheery wall of art.

A man who's 27 year career as a pilot suddenly came to a grinding halt due to being diagnosed with Parkinson's and was advised by his neurologist to turn his hands to some hobby to retain the fine motor skills in his hands . He turned his garage into a workshop calling his business "Wood Wackers" and is now producing amazingly beautiful furniture, and smaller items for the home. Take a look at his website to hear his story and see the remarkable woodwork he produces.

What you never want to hear - 14th June 2013

Receiving diagnosis of Parkinson's is bad enough, as one slowly takes in the news, learning how this will effect one's life, adjustments to daily activities are made accordingly to accommodate changes that slowly start to take place. To receive a further diagnosis of dementia is harder still, and one that is not talked about much. To connect Parkinson's to a form of dementia, Lewy Body Dementia (LBD) is much too frightening a thought for most, and especially patients who are still working, are scared of the possibility of being fired for incompetency. Shamefully there is stigma and humiliation related to dementia (and unfortunately a whole range of mental illness), but some Parkinson's patients might be diagnosed with LBD, which is of course the last thing you want to hear. One couple's story, Barbara and Lee, has been an eye opener for many, and the courage in sharing their journey of Parkinson's with LBD will hopefully make people more aware. Thank you Barbara and Lee for being so open and sharing with the world your experience. Not talking about something because you don't want to hear, or its simply to awful to think about is not going to help you or anyone else and it certainly wont magically disappear. The undeniable fact remains, that some patients with Parkinson's may encounter LBD at some stage. So let's open our eyes, and stay informed. Information and education empower us.

Naughty but nice - 16th June 2013

A girl friend of mine, after reading my article on The Huffington Post about "Sexuality and Disability" very thoughtfully bought me an item of clothing. I wont go into details, but just let's say it's to sleep in and is made from a slippery silky fabric, something naughty but nice. I'll leave the rest to your imagination! I'm not telling you this as a sensational bit of gossip, but actually as a very helpful tip. Anyone suffering Parkinson's knows how difficult it can be moving in bed, especially first thing in the morning when rigidity along with painfully sore muscles have set in during the night. Several people with Parkinson's told me that putting silk sheets on the bed makes it easier to move. To be honest I've never fancied sleeping on silky slippery sheets, and to start buying new bedding is not in our budget right now, however wearing silky nightwear has the same effect, enabling me to move with less difficulty. This is just a simple suggestion that might help someone in the same position. Now this doesn't just apply only to you ladies out there, but also to any men who have Parkinson's - for you too can wear silky pajamas which will help you move in bed with less effort. If you have any good ideas or useful tips, please do write to me or leave a comment on this blog, so that we can all share any helpful information that might make life just a little easier.

Parkinson's is a brain disorder - 17th June 2013

When I speak to people about Parkinson's, they immediately think of tremors or shaking. If they have a little knowledge of the disease, they may also know about the rigidity of muscles and general difficulty with movement. What I find is often overlooked is the fact that Parkinson's is a 'brain disorder', effecting the nervous system, which also includes biochemical changes that bring about mood changes. It seems unclear if depression, which affects roughly half of the patients, is due to suffering a chronic degenerative disease, or if it is actually part of Parkinson's itself. Statistics show that men are more prone to depression than women (87% men - 13% women). However it isn't just depression that I am talking about today, for there is a whole range of emotions that come into play.

Denial at initial diagnosis, especially for those who are still working and want to continue their career is very common. Worrying about colleagues or bosses finding out; despite this reaction being understandable, denial is a serious issue and should be attended to. There are other mood changes that are not spoken of much or considered troublesome, yet ask someone with Parkinson's, and if they speak truthfully, they may give you a very different story. Fatigue, as simple as this may sound, can be severely underrated and effects any body movement. Just standing or moving around can be draining (and here I speak from personal experience) and due to this, one can become withdrawn and less outgoing or social. Anxiety also plays a role in mood changes which can be put down to various causes, but nonetheless, feeling anxious is unpleasant. I find that when my medications are not working (usually because I have forgotten to take a tablet at a specified time) during an "off" period I become very anxious as my symptoms emerge in full force. No one except a fellow sufferer can appreciate how uncomfortable this feels. Patients can become apathetic too, and if you are a caregiver and notice your loved one is showing signs of simply not caring about anything and has become lethargic, inform your doctor as soon as possible. As a caregiver you may notice things that others do not, and that the sufferer is unaware of. If someone appears to have "given up" and talks of death, this is serious - please seek medical advice immediately; do not wait.

Be smart - 18th June 2013

I was enjoying a night at the opera recently, and during the three hour production of La Traviata, in the two intervals, I was horrified to see a large proportion of the audience immediately got out their smart phones and were busy checking e-mail or sending messages. What could have possibly been so urgent, that it couldn't wait until the opera had finished? I see people walking around clutching their smart phones as if this is the most important priceless possession they own. It reminds me of children who when very young, lovingly grasp and drag everywhere their favourite blue "blankie" for security. Wherever you look, you see people of all ages holding onto their smart phones for dear life, mesmerized as they swipe back and forth. What did we all do before mobile phones, and now with technology's fastening speed, we have advanced (or in my opinion regressed) developing the ultimate in anti social behaviour \- taking more notice and spending much time with the smart phone than the people around us. How did we manage without being in constant contact with each other every minute of the day, the world now at our fingertips? It would be far "smarter" to know when it is deemed appropriate to put down your phone or can I be so bold and have the audacity to suggest actually turning it off when in company. Maybe if I didn't have Parkinson's I too would by guilty of this modern day behaviour and own a smart phone, but I cannot use a touch screen. With little dexterity in my fingers, I'm unable to operate one of these, so I have an old fashioned dinosaur of a mobile phone that simply makes and receives calls; most importantly it has an alarm that rings several times a day telling me when to take my Parkinson's medications.

Day dreaming - 19th June 2013

If I were to indulge for one moment in dreaming of winning the lottery, I would build a special hotel for disabled and long term chronic patients along with their caregivers who cannot afford a holiday, but badly need respite from their daily struggles. I dream of building a luxurious facility solely for this purpose, all rooms with electric beds and safety features, en-suite disabled friendly bathrooms, appropriate activities and entertainment, healthy nutritious cordon bleu cuisine, professional trained staff familiar with the needs of chronic patients and disability, along with on site nurses and doctor to ensure the visitor's medical care and well-being during their stay. As any Parkinson's patient is aware, keeping one's mobility is vital, so I'd add a team of physiotherapists who would hold sessions each morning, and hydrotherapy available for those who enjoy and benefit from being in the water. There would of course be a beautiful garden with flat wide paths meandering through a canopy of blossoming trees giving shade to the many comfortable seats along the way, breath-taking rose gardens, and something of interest to catch the eye at each turn. My dream hotel would be the perfect retreat for anyone disabled or suffering serious health issues, using the latest state of the art technology and careful planning.

Speaking from personal experience, a week's vacation would re-charge my batteries and those of my husband who is my caregiver. A break from routine, spent in lavish surroundings, and a change of scenery is important for everyone's physical and mental health. Those who are in need of a break such as this, often are under the strain of financial burden, relying solely on one income, so wouldn't it be wonderful if only a small nominal fee be charged, or in some cases, no charge at all.

Unfortunately this is just a day dream, and I have no way of making it come to fruition. Winning the lottery is as likely as finding a four leaf clover, so I guess it's back to reality! The laundry basket is overflowing, the floors seem to constantly be covered in dog hair, the sink is full of dirty dishes, and I'm sitting here in my pajamas for everyone left home early this morning before I managed to get dressed.

Remote control - 20th June 2013

One evening my husband was engrossed in a football match airing live on television, when I naturally had something vital to tell him. Despite it being an important game featuring his favourite team, whatever it was I had to say just couldn't wait (although now I haven't a clue what it was) but at the time it was so imperative that I had to tell him right away. As I prattled on, a little unsure I had his undivided attention, my eyes were uncontrollably drawn towards the remote laying on the coffee table. Suddenly all thoughts disappeared from my mind as I saw how dirty the control was. Before my husband could say a word, I whisked it away and gave it a quick clean with a wet wipe. I don't know what chemical wet wipes contain, but they clean up literally anything and everything. Whilst I rubbed away the dirty smudges, I accidentally changed stations several times, much to the dismay of my husband trying to watch football. Thankfully he always remains in good spirits and has a sense of humour at all times. He simply laughed as I apologetically handed him back the remote control, which he then held tightly, lest I decide to clean a little more! By this time I had long forgotten whatever it was I wanted to tell him - I guess it couldn't have been really that important after all. A sense of humour is so important, and I'm blessed to have a husband who can laugh and see the funny side of life. Having Parkinson's, a sense of humour is vital, and without this, I don't know how we'd make it through each day (or even a simple football match!).

Thinking ahead - 21st June 2013

A few health officials have visited our house, which has been especially designed around my needs with disabled friendly features necessary to create a safe and comfortable environment. When friends or neighbours first come to see the house, they are amazed we've thought way ahead for the future, thinking of everything we could, to make our home wheelchair accessible, safe, low maintenance, the emphasis being on comfort rather than style.

To many it may appear premature and give the impression that I've given in to the fact that one day I will be completely wheelchair bound. I look at it quite differently, for a great deal of time, effort and thought, goes into building a house for a disabled person, and although I'm very optimistic, hoping a cure will be found before I deteriorate much further, it would be irresponsible and negligent for us not to create this environment now whilst building a new house. To make changes to a finished house is costly, creates a lot of strategic problems, an amazing amount of disruption, not to mention dirt and fine dust that manages to seep into every corner of your house no matter how much you cover your belongings in plastic sheeting. Putting my health issues aside for one moment, let's face it, none of us are getting any younger, and our house is perfect for "old age". We all eventually unwillingly surrender to the ageing process, for there's no escaping "father time" whose clock ticks on whether we like it or not, along with "mother nature" who defiantly endows us with her gifts of greying hair, lines and wrinkles, the weathered features of a long life well spent.

So if magically a cure were to be found for Gaucher and Parkinson's, our house would still be very comfortable and suitable for our "golden years". We will never have to move again, which delights me no end, for I don't wish to see another packing box or reel of brown tape in my life!

The five senses - 23rd June 2013

I was talking with a friend and she asked me "Which of the five senses would you miss the most?" A strange but thought provoking question, I pondered a while. Having Parkinson's I've already lost my sense of smell. Sometimes this can be a good thing, especially when living in the country, cow sheds and chicken coops, become rather pungent in hot weather, or when our large dog sitting right next to us, passes gas and has the cheek to look slyly out of the corner of one eye as if to say "it wasn't me!" But there are many wonderful smells I miss, such as a cake baking in the oven, a good aged wine, the smell of flowers, or the unforgettable smell of a new born baby.

I can't even begin to imagine losing my voice, but if I lost the ability to speak, my long suffering husband would probably heave a huge sigh of relief for generally I don't stop talking! But seriously the loss of communication bares huge ramifications and a particularly frightening one, if hospitalized.

To lose one's sense of taste would be very upsetting and no doubt lead to weight loss as this would have a huge effect on one's appetite reducing the incentive and desire to eat. The only up-side would be resulting in a great slender figure, but this is too high a price to pay for vanity.

Losing one's sense of hearing I should imagine would impede one's social abilities and in a sense a feeling of isolation as one is cut off from the world. One could learn to lip read; most films and television programmes have subtitles, but to lose one's hearing would without doubt be a serious loss effecting one's life substantially.

However, to me personally, the loss of sight would without doubt be the most detrimental and life changing. The thought of not seeing the faces of those I love and hold dear, without having independence of going places alone, unsure of every step even in my own home, no films or books, missing out on all the beauty that nature bestows on this world we often take for granted; I shudder to think how dark and insular life would become.

So maybe living with Gaucher and Parkinson's isn't so bad. It could be a lot worse that's for sure. Be grateful for what you have and count your blessings. Take a look at this astounding clip about Brain-Computer Interface, showing how technology is advancing by leaps and bounds. Maybe a cure for Parkinson's is closer than we think!

A visiting owl - 24th June 2013

Someone I love dearly, collects owls. I know you read my blog, so today this one is for you. I hope your health improves and despite the pain you are in, try to stay cheerful. Good health is precious and I wish you a speedy recovery.

Being a writer at heart, I have a furtive imagination. When I was a young child, as soon as I could read and write, I began writing stories and poetry, and would make up stories on the spur of the moment to entertain my niece and nephew. One day returning from school, I couldn't have been more than 11 or 12 years old, I saw a man driving along our street with two owls, one perched on each shoulder. I stared at this peculiar sight, hardly believing my eyes, and ran inside to tell my mother what I had just seen. I was met with a disbelieving look and knew she didn't want to hear anything more about owls in cars. A child can feel quite hurt when they are dismissed and not believed, but vengeance was mine, for a few days later, someone paid us a visit. My mother opened the front door to find a man on the doorstep, asking if he could go into our back garden, as one of his pet barn owls had flown in and was sitting on a tree. Astonished, she turned her gaze upon me, and quickly led the man to our back garden, where sure enough, sitting quite contentedly in a tree was a small owl. The man managed to coax the owl down with a tit bit of food, and the owl then sat perched comfortably on his shoulder. He thanked us, and as he was about to leave, my mother could contain her curiosity no longer, and asked him if he ever drove his car with the owls sitting on his shoulders. My mother's mouth dropped open as he said "Yes of course, all the time. They love coming for a ride in the car with me." From that day forth, my mother took more notice when I'd relay a strange event or story to her. I am one of those people to whom the most peculiar things always seem to happen. I don't know if this is a blessing or a curse, but it makes for some great stories.
The reality of day to day - 25th June 2013

Talking with my brother who also suffers from Gaucher disease, we understand each other only too well. Being in constant pain, day in - day out, the inability to do what we would like to, restricted mostly to the house, it's not easy staying positive all the time. On occasion there are bound to be times when it's just not possible to keep cheerful, and I believe this is only natural. When you know, as my brother and I do, that we're not going to get any better, and sadly a cure for Gaucher, may be discovered too late for us, it's not easy to continually stay jolly and light hearted with a smile on one's face. Those who are in similar circumstances, suffering a chronic condition, I'm sure can relate and understand the frustrations of simply how tiring it is to endure ill health every single day with no break or intermission. I wish I had a magic wand to make all this go away. I can't even remember what it feels like to have no pain - it's been that long.

I take part in a programme where student doctors in their first year talk with a chronic patient, enabling them to gain experience and hear first hand what it's like to live with chronic illness. This programme has been such a success, it has now become a permanent part of the syllabus. I took part last year and had delightful students visit me at home and attend one of my six monthly check-ups at the hospital. This year, fresh students visited me, and unable to fit into my scheduled hospital visit, instead they came to my house at the same time as the nurse who administers the i.v. treatment to me for Gaucher disease. The nurse is excellent and well versed with many years experience in Gaucher disease, and was able to give the students some valuable information and input from her knowledge and point of view. As she inserted the needle in a vein on the top of my hand, the students cringed and immediately asked "Why there?" as it surely hurt more instead of in the crease of one's elbow. The nurse smiled and explained that my pain threshold is not the same as a normal healthy person, and therefore this was nothing for me. Explaining to young student doctors that I'm in constant pain, whilst able to continue an intelligent conversation, with no facial contortions or signs of the discomfort I'm in, was hard for them to get their heads around. Pain is part of my life, and dealt a double dose, I have various pains, both muscular and bone from both diseases. So when I get on my husband's nerves, I'm not just "a pain in the neck", but literally one big pain!

Keeping abreast of things - 26th June 2013

Now that I have reached the grand age of 50, I received an invitation from my health fund to have a mammogram. Right!!!!!! This is all I need - a mammogram. I've never had one before but have heard from other women, that it doesn't matter whether you are big or small chested, it hurts like hell as they squash your breasts in-between two plates of metal to take an image/scan. You would have thought with today's technology they'd have come up with a better and less painful test than this. I've got Gaucher and Parkinson's, surely there is no way I could get breast cancer too? What are the odds? The mere thought is just too much to even think about. I really don't want to take this test - and am certainly not interested in having my boobs painfully crushed, only to be told everything is fine. My body is wracked with pain daily and goes through enough - I need this test like a hole in the head. Although there is no record of breast cancer in our family medical history, it would be negligent of me to ignore this 'delightful' invitation that was sent in a pretty pink envelope with flowers on it, as if this would make it all the more inviting. So I guess being the good patient, and not wanting to let down the side, I'll phone and make an appointment.

I know how you feel - 27th June 2013

"I know how you feel" a well meaning lady said to me the other day, nodding her head with an expression of deep concern. Has anyone ever said this to you? Annoying isn't it? I would never say this to someone, unless I had really experienced what they were going through. I know it's often difficult to know what to say in certain circumstances, but please, if you are not chronically ill, don't ever say "I know how you feel" to someone who is suffering from a serious health issue. I think it's this very sentence that gave me the incentive to publish my first book "Parkinson's, shaken, not stirred", as I quickly learnt that no one except a fellow sufferer can really understand what it's like to live each day with an array of strange debilitating symptoms, sometimes battling just managing to hold it together. There are good days when I feel able to cope with simple daily activities, and can enjoy being with the family and close friends. When having a bad day, it's quite a different story, and trying to explain to someone what I am experiencing is very difficult to put into words. There are times that even when I stick rigidly to my medication routine, and I haven't been doing something I shouldn't, Parkinson's kicks in, taking me over with full force. Then my body like a battle field is subjected to a civil war as Gaucher disease and Parkinson's battle between themselves, leaving me as casualty. The two diseases taunt each other, and one exacerbates the other, often leading me to distraction. But tomorrow is another day, and the sun will come out, I will arise early as I usually do, and hopefully it will be a good day.

In the midst of the night - 28th June 2013

Once again I find myself awake in the middle of the night; house cloaked in darkness, barely a sound to be heard apart from the fridge softly humming and our dog's incessant snoring. Unable to return to bed which is where I long to be and fall into restful slumber, pain is my unwelcome companion. This is probably the loneliest time for anyone chronically ill, not wanting to disturb the rest of the household who peacefully sleep and are unaware that I'm sitting at the kitchen table once again pouring out my heart with all the thoughts that fill my mind at such an hour. When no pain relief medications work, and no position is comfortable in bed, I cannot lay there any longer gazing at the wooden beams in our ceiling that peer at me through the blackness.

Twenty two years ago, when I met the Professor who takes care of me from a Gaucher point of view, he asked me a very pertinent question: "Are you the type of patient who lies in bed when not feeling well or do you get up and do things anyway?" I think this was a very astute question, and if you've been following my blog, you can probably guess the answer I gave him. I have never been one to linger in bed; you can hardly make me sit still, mind you since diagnosed with Parkinson's, makes sitting still a virtual impossibility! I nevertheless like to keep occupied and busy even now with the addition of Parkinson's. This is who I am - it's who I've always been. I love to write, and this has given me purpose - without which I don't know where I'd be. When you're not feeling well, do you procrastinate in bed and dive under the covers to escape the world? or do you get out of bed and endeavour to busy yourself?

It's an interesting question as to whether one's behaviour as a patient is a result of upbringing, or simply one's personality. I write about this topic in my latest article entitled "The English patient" on The Huffington Post.

Distinguishing pain - 30th June 2013

I was able once, to determine which pain belonged to which disease, but of late, it has become increasingly difficult to distinguish the different pains which seem to be converging on one another. A doctor will often ask a patient to describe what a pain feels like; is it a sharp pain, a throbbing dull ache, constant or intermittent, only upon moving, or even when motionless, in one specific spot or does it radiate outwards? It is important to explain as best you can, the pain you are experiencing to your doctor, which will help him/her to understand and how to best help you.

The pain I am experiencing at present is acute, rendering my left arm useless. This makes typing extremely difficult, in fact it makes everything challenging. Getting dressed unaided is not possible and even getting in and out of the car creates problems. I am sorry I cannot write any more this morning, but hope you'll join me again tomorrow, when hopefully it will be a better day.

Parkinson's becomes popular - 1st July 2013

A friend of mine who has Parkinson's is going through a rough patch at the moment and I think anyone suffering PD can relate to the emotional and physical turmoil we endure when our present state is compromised. My friend is a wonderful woman with great strength of character, sparkling eyes that reveal her marvellous sense of humour and like me, she has a fighting spirit. I'm sure you would all join me in wishing her well, and hope she'll soon be able to put this difficult period behind her. I write today's blog in her honour and hope it brings a smile to her face.

It is only natural as children, most of us wanted to fit in at school, and hankered to be part of the cool group, the popular kids. As a child I was very short, (still am if the truth be told) and was very pale, often missing school due to ill health, I was definitely not "popular". In fact, I'm quite sure if any of my former class mates were asked today, none would remember me at all. Speaking with my friend who has Parkinson's, she made me laugh so hard my sides were aching, as she said "We have a popular disease" when in fact she meant to say: 'a common disease'. Upon reflection, she may have been right, as due to all the hype that Michael J. Fox and his Foundation have brought to our plight, in turn it has spurred on Support groups and individuals around the world in making as much noise as possible. Therefore Parkinson's has become in a way a "popular" topic. I find that more people are talking openly now; much exciting new R&D is going on around the world, often stories being told in the news, hopefully resulting in the general public being much more aware than before. So I may not have been popular in school, but I now have a popular disease!!!

How to stay cheerful - 2nd July 2013

I am asked time and again, "How do you stay so positive and cheerful?" This is a question I will try to answer as best I can. Living with two chronic diseases, it most certainly isn't easy, and I have to admit there are occasions when it all gets just a bit too much, even for me. No one can remain smiling and happy every moment of each day, it's not possible and quite frankly it would be a farce. Luckily most of the time I manage to keep a sunny disposition and have a smile on my face. I have been this way since I was a child, so it is deeply inherent. I think some people are simply born with a positive outlook, (or as I refer to it, having the "happy gene") but I believe one can make a conscious decision to put on a brave face, smile and look at the glass half full. There are many things in life we have no control over, and most certainly ill health is one of them. By changing your mindset, and vanquishing any negative feelings, not allowing yourself to indulge or wallow in self-pity; find your inner strength and focus on good thoughts and things you have been blessed with. No one wants to be around a grumpy sour faced moaner, so if this is you, change your attitude before you find yourself quite alone. You have the power and ability to wake up this morning and decide, enough moaning and complaining; make a change in your approach and you'll find life will be much easier. Don't get me wrong, you'll still have Parkinson's and your symptoms and medications will be exactly the same, but you'll find your positive vibes will start to have an effect on all those around you which will ultimately bounce right back at you. Your doctor will have more empathy for you, and family and friends will genuinely want to spend time with you.

Parkinson's Exercise - 3rd July 2013

The old saying "no pain - no gain" is a definite "no no" when it comes to anyone suffering from ill health. As my physiotherapist told me a long time ago upon one of my first sessions, "if a certain exercise or movement hurts - stop doing it!" Good advice indeed and particularly for me where my issue isn't just merely Parkinson's but is compounded by having Gaucher disease, leaving me with painful joints and delicate bones. Exercise is however very important for anyone with Parkinson's, for we all know how rigid and painful muscles and joints can become, especially after a night's sleep, a journey in the car, or simply sitting at a dining table for an entire evening. If you have the ability to join a group especially for those suffering Parkinson's, then this is ideal, as you also benefit from the social aspect. But if like me, you are isolated, and don't have the ability or facilities, there are many simple safe exercises you can do in the comfort and privacy of your own home. Take a look at this clip on YouTube which may be of help to you. Thank you Sherryl for taking the time and trouble. Your advice, experience and input are much appreciated by the Parkinson's community.

Independence Day - 4th July 2013

It is clear what the 4th of July signifies to anyone in the United States; Independence Day, celebrated with families coming together to share in a special meal, parties and fireworks, a nation remembers its past and looks forward to a bright future. Independence day can mean a number of things to different people. Recovering from surgery, the day one is able to go to the bathroom by oneself may sound insignificant, but is a huge step forward in recovery and giving one back the feeling of independence. Having a car modified for a disabled driver, the vehicle literally becomes the legs of a person enabling not only independence but a sense of great freedom. For someone highly disabled and wheelchair bound, the difference between a regular wheelchair where someone is required to push, and receiving an electric wheelchair in its place, again the independence gained is huge and increases the quality of life considerably.

Whatever independence day you are celebrating, whether it be a National Holiday or a more personal achievement, enjoy your freedom and treasure your health - a precious gift which is often taken for granted.

Nordic Walking Poles - 5th July 2013

I was given a pair of Nordic Walking Poles recently, and having heard about this, and that some Parkinson's patients were finding a remarked improvement with their walking, I decided to give it a go. It's much harder than it looks, and getting the movement right takes quite a bit of practice. My co-ordination is not what it used to be, and I found it quite difficult to tackle. I would be interested to hear from anyone with Parkinson's who is using Nordic Poles and if they've felt any improvement with their walking.

I am sorry I cannot write more this morning, but my present condition is not good and a very painful shoulder and arm are making it extremely difficult to write. So you'll have to forgive me this morning for my short blog. If you'd like to read a little more, take a look at my article on The Huffington Post regarding independence.

Home care 7th July 2013

At some point, home care may become necessary when suffering a degenerative disease. Whether it's having someone come to your house for several hours a day, or live-in full time help, this is a huge step and a difficult one to accept emotionally for patient, caregiver and other family members living in the house. Also the financial ramifications can weigh heavily on a family if the decision to bring professional 24 hour help in is made.

Day time help if only for a few hours each day, is less intrusive to one's family routine, but if a full-time care giver is required to live in the family home, a comfortable and suitable bedroom preferably with it's own bathroom facilities should be taken into account and made available.

Having a stranger in one's space, helping with the most personal basic daily procedures, can at first feel like an infringement upon one's privacy. It doesn't bother me being undressed or showered by another person, but more the fact that I require this help at all, is physiologically hard to deal with. Swallowing one's pride, and allowing someone to help shower and getting dressed is a hard pill to swallow.

Someone asked me the other day why I don't have a lady to help me. I tried as best I could to explain I haven't reached that stage yet. I fully realise that a day will come when I will have no choice, but until then, I will manage as best I can with the help of my husband and daughter. I'm stubborn and determined to live as normal a life as possible. It's hard for those to understand, who are thankfully not in my position, and although it sounds only logical and sensible to employ someone to help, it takes time to accept these unwelcome changes along with the emotional disturbance and upset this decision would cause. It's very easy for others to tell you what to do, but they are not in your shoes, and giving out advice, however sound it may be, if at the wrong time, is not welcomed or appreciated.

Get organised - 8th July 2013

I have always been very tidy and organised, which comes quite naturally to me, although some may scoff saying its the sign of a sick mind! In our house there is now a place for everything and everything is in its place. In our laundry room, like in most households, an array of odd items are stored out of sight yet are regularly used and need to be easily assessable. We found opaque plastic boxes with lids and have labeled each box, clearly identifying its contents. Anyone who requires the first aid box, or anything else, has to merely look on the shelves and will easily find the relevant box. This is of great help especially when having guests to stay or an extra pair of hands to help around the house. The same applies in our walk in wardrobe. Again shoes and other items are in boxes, making the most of every inch of space and being orderly it's easy for anyone to help as everything is labeled.

Clearing out and getting rid of any item that is broken, no longer used or wanted makes room for the things you do need. Over the years we are all guilty of accumulating unnecessary clutter, and if not dealt with, it can literally take over a household. You may well ask why am I talking about clutter, and what has this got to do with being disabled. It's a matter of safety. In our previous house we were overflowing with belongings and little storage, cables dangerously everywhere on the floor and due to my lack of balance, I fell many times. I am fortunate not to have done any serious damage. Since moving house, now with the ability to keep things tidy there are no items left on the floor; instead wide clear spaces to walk without tripping over things. I haven't fallen once in our new home (maybe I shouldn't tempt fate and speak too soon!). So not only does our home now look pleasing to the eye with no clutter, easier to maintain and keep clean, but is far safer for me.

I've got a screw loose - 9th July 2013

When my husband asked me if I'd like something to do, I was glad at the suggestion, for having been in terrible pain for nearly three weeks now, keeping occupied is becoming difficult, and I badly needed something to take my mind off the relentless pain. Not realising what he had in mind, I sat eagerly awaiting my new found project. As my husband walked towards me with a cunning grin on his face, lovingly clutching a large box containing many little compartments for nails, screws, nuts and bolts; I realised what I'd let myself in for. My husband who is quite adept at do-it-yourself skills, in particular carpentry, he must have every size and type of nail and screw imaginable. As you can now well have guessed, my task was to sort out the messed up compartments putting all the same type and size together. Although far from an exciting or stimulating activity, it did keep me occupied and my mind off the pain, and was a great exercise for dexterity in my fingers on the one arm I can still use. After an hour, I had finished my assignment, only to find he had more boxes like this. Every time I would finish with one, yet another would appear, as if they were breeding in the dark recesses of his tool cupboard. My husband now has the tidiest and most orderly tool cupboard, but next time he asks me if I need something to do, I shall first ask what he has in mind before merrily agreeing, otherwise he'll think I've got a screw loose!

In denial - 10th July 2013

For the past few weeks I have had a pretty rough time, and it is starting to prove a little wearying to say the least. Fed up of feeling unwell and living constantly with pain, I have decided just for today not to think about my health. I am going to all intents and purposes act as if I'm in denial. I think after six years of keeping a stiff upper lip (as the British would say) and a smile on my face, I'm allowed to be in denial for one day. Today is just one of those days I don't want to hear anyone asking "how are you?", or "Do you need anything?" It is painfully clear to anyone who knows me, how I am feeling, or at least it should be. As for needing something - yes yes, I need a new body that is in working order, and if you can't manage that, then I'll settle for the winning numbers of this week's lottery.

Suffering two chronic diseases I have to put up with an awful lot - more than you can possibly imagine, and sometimes, on occasion, something brings me down and life gets to be a little too much to bear. I have too many symptoms, some overlapping, leaving me unsure of what is attributed to each disease. I don't know which doctor to approach, unsure what is happening - is it Gaucher related or is it Parkinson's? Who knows? I should probably be in hospital, but don't want to go. So I have decided that just for today I'm in denial, and will indulge myself by refusing to think about my condition.

In pain, I spent precious energy and great effort yesterday preparing food, and making my mother's recipe for lemon meringue pie. I had no supper last night, as we waited for our guests to arrive, but after waiting two hours, realised they were not coming. By then it was too late for me to eat, as I had to be on a fast for a blood test this morning. Our next door neighbours ended up being the recipients of the lemon meringue pie, since this desert does not keep well. Writing this blog I sit here waiting for the nurse to arrive at 06:00 to take my blood, and then I'll be able to have breakfast. Upset, frustrated, in pain and feeling low, I shall concentrate my thoughts on ice cream sitting in the freezer beckoning me, and the garden that entices me to sit outside with my faithful dog by my side and admire my meager gardening efforts. Tomorrow is another day, and I'll no doubt be back to my old self and tackle it like I usually do, with cheerful optimism and hope.

What's normal? - 11th July 2013

Today is a new day - so I'll turn over a page from yesterday's sorrows and begin a new chapter. I unequivocally refuse to let anything or anyone bring my spirits down, my fighting life-force has kicked in this morning, and I'm back in full strength. So beware - don't mess with this Parkinson's patient!

Having ups and downs when suffering any chronic illness is perfectly normal. Living with Parkinson's, one's sense of normality keeps constantly changing. Every day is slightly different, there is no standard behaviour regarding this malicious disease, which like a mischievous child hyped up on sugar, one has no way of knowing what awaits a patient from day to day. When I come across someone unfamiliar with Parkinson's, they find it quite "normal" that one would shake and have tremors. Often I've been asked "Why don't you shake? Isn't it normal for people with Parkinson's to shake?" Well yes indeed for most patients it is, however there are some that don't shake but instead suffer from many of the other debilitating nasty symptoms that this disease has to offer. When I explain that my medications control the shaking most of the time, they then think, "Oh so you're OK then?" How far from the truth could that response be? How does one even begin to explain what is going on. I often want to throw my hands up in desperation, as I describe how dopamine normally helps control the shaking, but not always. There are no normal set of rules with this particular disease. The definition of "normal" according to the Oxford Dictionary is: "conforming to a standard; usual, typical or expected". Therefore the word "normal" is incongruous with Parkinson's. How can anyone judge what is "normal"? Does "normal" even exist, for we are all individuals, everyone is different, and wouldn't life be awfully boring if we were all the same? I think sometimes it's a person's eccentricities and imperfections that make them the remarkable person they are. When someone or something is not "normal" - the fundamental "difference" is usually what makes life far more interesting. I'd opt for "different" any day over "normal".

Life's barometer - 12th July 2013

Never knowing when I'm going to have a good or bad day, family and good friends who understand Parkinson's' sudden unpredictable changes, like the fluctuating weather, are getting used to the ups and downs I experience. I should have my own personal "life barometer" hanging on the wall, showing what the conditions today are going to be. As a child I had a small weather vane housed in a miniature wooden Swizz chalet , where in good weather a small figure of a lady would appear in a sun hat, and if the weather was decidedly cold, a little figure of a man holding up an umbrella would swing out taking the sunny day lady's place. How accurate this contraption was, I'm not too sure, for Britain is renowned for it's cloudy grey skies and plenty of rain no matter what month of the year. It's no wonder the fields and countryside are so green. Needless to say as a child I rarely got to see the little wooden smiling lady in her hat. I don't know if these charming weather vanes are still made today, but maybe I need to find a Parkinson's barometer. Does one exist? I doubt it, but if there was such a thing, my husband and family would find it awfully useful.

It was brought to my attention the other day that despite great strides having been made in public awareness towards Parkinson's disease, there are still many people who are ignorant about the symptoms and how a person with chronic disease struggles each day. This prompted me to write "Defining Symptons" as my article this week on The Huffington Post.

New Book Site - 14th July 2013

Inundated with e-mails from fellow sufferers and caregivers, I realised my book "Parkinson's, Shaken, Not Stirred" written from personal experience, could make a difference. Through my writing I am imparting an important message of support and hope to others around the world, letting them know they're not alone in their daily struggles. I have worked long and hard campaigning as an advocate for Gaucher disease and Parkinson's over the last few years, so I forged ahead alone, not wanting to waste any precious time in chasing illusive book agents and publishers. Recently I came across a delightful gentleman; a retired journalist and author with many years experience, who has created a writer's guild called indiePENdents.org - a global cyberspace organisation, especially for authors having difficulty getting their foot in the door of the traditional publishing world. Every book is carefully vetted; only those deemed worthy are accepted, and added to an on-line catalogue. The e-book market is flooded with unknown authors, so this is an excellent way of separating the wheat from the chaff. I would like to say a big THANK YOU to Jasha and Julia who have put a lot of effort, work and time into creating this amazing site. Apart from being delighted that my book appears under "Member Books", hopefully enabling me to further spread my message, there are many other good books of different genre; something to suite every taste, each one verified, upholding a high standard of writing. Please take a look and see for yourself the indiePENdents site.

Parkinson Education - 15th July 2013

I've often heard the phrase "location, location, location" when referring to homes or businesses! Well I don't know about "location", but after last week I can see that "education, education, education" is far more important. I received many comments and messages about my last article in The Huffington Post and wanted to reassure you all that I am not at death's door, and am feeling slightly better than last week which thankfully to the care of my doctors there's been an improvement.

I purposely wrote a rather strong article, as a few things have happened recently bringing my attention to comments, that left me wondering how serious does the general public take Parkinson's. Despite a great deal of publicity this disease has received, I now wonder how much people really understand the suffering involved, and I wanted to make my message loud and clear, that this rotten disease is not to be taken lightly or dismissed.

I have spoken of the problem many times, how some people make assumptions and jump to conclusions merely from a visual picture. Just because someone is wheelchair bound, does not necessarily mean they are suffering. They may simply be disabled and unable to walk, but other than not having the use of their legs, they are in good health. If I were to stand next to someone like this, at a glance, who would you presume is the individual suffering more? Most just see a wheelchair and preconceived stereotypes make them come to the wrong conclusion.

This is why I passionately continue to write, and be an advocate in the hope of educating those who badly need to wake up and pay attention. Parkinson's is not a walk in the park! It's a nasty, degenerative, life shortening, serious debilitating neurological disease, that for now, has no cure.

Home Treatment - 16th July 2013

Yesterday morning, the nurse arrived bright and early to administer my i.v. treatment for Gaucher disease. I have known this nurse for quite a number of years and apart from being a lovely woman, I admire her dedication and work ethics, not to mention the genuine concern she has for the Gaucher patients in her care. What I didn't realise until recently, was that she is responsible for Gaucher patients being able to receive "home care". This was a huge advancement which not only increases quality of life greatly for patients, but must relieve hospitals of costly hours spent administering the enzyme replacement therapy in outpatients wards. Instead of spending hours every two weeks in hospital hooked up to an infusion receiving the enzyme that Gaucher patients are missing, possibly missing precious time at school or work; to be able to receive treatment in the comfort of one's own home is of huge benefit to all. So should this modest wonderful nurse happen to be reading my blog this morning - I'm sure the many patients who have gained significantly like myself, would like to join me in saying a huge THANK YOU for not only thinking of "home treatment" but making it a reality.

Let me introduce you - 17th July 2013

I would like to introduce you this week to several people, who have inspired others with their determination, fighting spirit and tremendous courage. What do all these people have in common? I think you know the answer to that. They all live with Parkinson's disease. I say "live with Parkinson's" for this is what they appear to be doing; living their lives, making the best out of what they have been dealt, and giving the world role models - imparting an important message of hope. The human spirit can be powerfully strong despite one's physical weakness. Today I would like you to meet Brian Grant, a former NBA Rookie All Star who was diagnosed with Parkinson's at the age of 36. Not only is 36 very young, but just imagine for one moment an athlete who relies on his healthy strong body, how devastating and life changing diagnosis must have been. Yet here he is climbing a mountain with other Parkinson's sufferers. With determination and true grit they "power forward" and made it to the top. Brian, you are an inspiration to us all. Click on this link to see Brian's story for yourself.

Through a child's eyes - 18th July 2013

Today I'd like to tell you about Andy McDowell who was diagnosed with Parkinson's, a father who wrote an amazing poem entitled "Smaller" for his two beautiful little girls, describing the disease using simple language that young children can understand. Children are far smarter than we give them credit for, and if we take the time and trouble to explain in a language that speaks to them, they will comprehend quickly and the natural adjustments made in the family as the disease progresses, will be that much easier for all concerned. Again, it's all about education and informing everyone around you. Take a look at this link and listen to a poem that touches your very heart.

First Aid - 19th July 2013

Statistics show that the majority of accidents happen in the home, and I can say with hand on heart, in our family, we appear to prove the numbers to be true. Over the years we have had to deal with an assortment of accidents requiring quick correct action, whether it be burns, scalds, cuts, bruises, sun stroke, sun burn, and many others for the list is long. Several years ago, my husband and I attended a first aid course, where amongst other things, we learnt CPR (cardiopulmonary resuscitation). I had wanted to take this course for years, as I believe everyone should have some first aid knowledge. You never know when or where you may need to apply first aid to yourself, family or friends, and complete strangers which has happened to me on several occasions. In many cases simple common sense will get you a long way, but learning first aid gives one the knowledge and confidence to deal with most accidents.

I remember one particular unpleasant incident which seems to stick in my memory as if it happened yesterday. I was attending to a young woman who was in shock after being beaten violently by her husband. Whilst seeing to the woman, I told my mother to call the police immediately, who soon arrived on the scene. The police woman took over from me and I was relieved from duty, as she was passed into professional hands and taken to hospital.

One hopes to never use what is taught in first aid courses, but it's reassuring to know what to do in the event of something happening.

I spend most of my time writing these days, and find that the publishing world has changed very much. My article this week on The Huffington Post addresses this issue.

I'm a shaker! - 21st July 2013

It's funny some of the things people will come up and say to me. "You're a shaker" a woman abruptly told me, with a serious look on her face. I've heard fellow sufferers refer to themselves as being a "Parkie", but "a shaker" was a new one to me. Never having met this woman before, a little disconcerted at her comment, I replied "I do have Parkinson's, but the medications pretty much control the shaking." The woman shook her head in frustration and explained that she was referring to how I am passionate in speaking out, being unashamedly honest, and writing about every aspect of chronic disease. She congratulated me on my writing and told me I wasn't sitting still, quietly doing nothing, and to quote her - I was "shaking things up." I hadn't thought of it that way before - so I guess I am a shaker. Maybe that's why I gave my book the title of "Parkinson's, shaken, not stirred". Many have told me it reminds them of a well known line from the James Bond movies, as our handsome hero orders a martini, shaken not stirred. It's a little early in the day for a cocktail, but maybe later, as the sun goes down, my husband and I will sit on the patio together and have a drink.

Pursue your dreams - 22nd July 2013

Life is short, and sometimes through no fault of our own, circumstances beyond our control, there isn't enough time to fulfill what we had planned and dreamt of. Each day is precious and not a moment should be wasted. The saying "don't put off tomorrow what you can do today" comes to mind, and I pretty much live my life in this vein. If you have a dream, don't put it on hold, waiting till the children are grown or you retire. Seize the moment and pursue your dreams. I have lost two brothers, one due to a tragic accident, another to ill health (Gaucher and Parkinson's disease) and although it has been some years now, the grief of losing siblings at far too young an age, stays with me like a sore gash that will not heal. My heart aches as if a very part of my soul has been wounded and not a day goes by that my brothers don't enter my thoughts. Losing someone close has made me painfully aware of what is important and the things that matter most. Unconsciously my husband and I have made the decision to enjoy everything whilst we can, and not wait till later in life, for who knows if there will be a "later". We embrace life now, live in the moment and don't worry about what we don't have, but enjoy the things we have been blessed with. If you have a dream that you can realistically pursue, don't delay, for "time and tide wait for no man".

Positive word power - 23rd July 2013

We are all aware that as soon as a word has been uttered, it cannot be taken back or erased. Words have great power and can do inordinate good or cause immense damage. Choosing words carefully, to ensure not offending or causing senseless harm to anyone and treating others how you would want to be treated, to my mind is foremost. Inappropriate behaviour or thoughtless inexcusable actions bear detrimental ramifications, causing hurt that often cannot be rectified. There are always consequences to flagrant abuse whether in words or actions, whilst painfully being received by others can in fact besmirch the character of the perpetrator. Thinking of others, putting a positive spin on what you say can make an enormous difference. Using positive words powerfully changes a situation, boosting morale for yourself and all those around you. The power of positive words can literally enhance life, making you a buoyant, vivacious person who all clamber to be around, simply because you make others feel good. I don't suggest for one moment that you put on an a false act or try to be a "people pleaser", for this would merely be a façade, that ultimately benefits no one, least of all you. However being genuinely cheerful and having positive things to say, to my mind makes all the difference to living the best life you can, especially when grappling with the on-going difficulties of living with any chronic disease.

Going into an optician's shop the other day, as we walked in, a throng of agitated customers clambered around the counter, urgency in their speech and causing the staff to become flustered, whilst others waited somberly on chairs. There wasn't a smile in sight, just an atmosphere filled with tension and anxiety. My husband and I waltzed in jovially laughing and greeted the sales lady who was under extreme pressure from her frantic clients. We calmly seated ourselves and waited patiently for the hubbub of people to dissipate. The saleslady eventually was free to serve us, and after much silliness and hilarity on our part, the atmosphere changed drastically and we left the shop, the saleslady now smiling and far calmer than when we had first entered. This may sound like a small and inconsequential example, but sometimes it's the simplest and smallest of things that really make a difference.

Predictable - 24th July 2013

A friend and fellow Parkinson's sufferer, who is a smart woman often says things that are so pertinent; both of us unfortunately understanding the other only too well as this lousy disease runs riot. I was thinking I would never have had the pleasure of knowing her, were it not for Parkinson's. As I've said so many times before, there's a silver lining to everything - you've just got to know how to find it. Living with any illness, having contact with fellow sufferers is invaluable, and I hope my friend doesn't mind, if I share with you something she said the other day which struck me immediately, as it encapsulated Parkinson's perfectly. She succinctly put PD in a nutshell by saying: "The only predictable thing about this disease is it's unpredictability." I don't think you can put it better than that!

I was at the bank last week, and having to sign papers, I noticed the tiny box on each page where one is supposed to sign. The clerk handed me a pen and apologised for the space being so small. I smiled to myself as I could immediately see the silver lining here, in a bank of all places, signing papers! Thanks to one of the many peculiar symptoms of Parkinson's, micrographia (abnormally small handwriting that is difficult to read) meant I was able to fit my signature with no problem into the small box allocated. The clerk doesn't know how lucky she was that I was very tired that day, otherwise she would have been subjected to a quick lecture, my usual performance of educating a total stranger about Parkinson's.

Frustration - 25th July 2013

Anyone with Parkinson's, chronic illness or other disability; feeling frustrated when one can no longer do things one used to, is perfectly understandable. Sometimes simply getting dressed is an accomplishment for me, particularly if just out of the shower. Having Parkinson's, it's no mean feat putting clothes on when I'm still damp. Needing to buy things or getting a task done at home, if unable to complete by myself, the enormous frustration is exasperating. I needed a roll of wide cello tape, and as silly and minimal as this may sound, it had been on my "to do list" for a few weeks. I hate asking for help, and was not about to bother anyone with such a small request, yet I had little opportunity to get anywhere to purchase it myself. Thankfully the other day, I was out with someone and able to drop into a store - so now I have cello tape! To an able bodied person this probably sounds pathetic, and maybe you cannot understand, but anyone who is house bound, and needs to get something done, or purchase an item, no matter how small, I'm sure is able to relate to what I'm saying. When my husband and daughter arrive home, they are sometimes bombarded (unintentionally on my part), with a flurry of requests from me, that may appear of no importance to them. The fact that I have to ask for help at all is horrendous, for I was once so capable, but now there are many things I cannot do by myself. My requests often end up sounding urgent, for unknown to my family, I may have been struggling to complete something for days, and the exasperation and feelings of inadequacy have quietly been building up. However this is no excuse to take out my frustrations on those I love the most. I have an incredible understanding husband, who would give me the sun and the moon if he could, and has the patience of a saint, but on occasion, I'm sure I must drive him up the wall. Good communication is therefore vital in understanding each other, and our sense of humour, that thankfully we both seem to have plenty of, keeps us going.

Gardening considered therapeutic - 26th July 2013

I enjoy nature and being outside. In particular, I love flowers, and like pottering around in our garden. Although I don't profess to know that much, I somehow muddle through and the garden is blooming and flourishing. Having raised flower beds enables me to reach the plants without bending down, and everything that has been planted is hardy and requires little maintenance. Once outside, I can easily loose track of time, it's no wonder that at long last I have a little colour on me and I don't appear like a pale faced extra from a vampire movie! Not only does gardening bring me immense pleasure, but somehow it relaxes and calms me in a therapeutic way. An article was brought to my attention, that appeared in the "The Huffington Post" newspaper, reporting findings of how gardening can ward off depression and improve one's mood. According to a survey in Gardeners' World Magazine, 90% of gardeners think it improves their mood and are less likely to suffer from depression. So now you know where you can find me.... I'll be in the garden!

If you'd like to read something further, my latest article is now on-line at The Huffington Post.

Knowing something's wrong - 28th July 2013

When we hear our inner voice telling us something's wrong, often we don't listen. Finding yourself in new circumstances, possibly in an awkward position, unsure of correct protocol, or being pressurized by an agitated person who has no empathy or time, sometimes mistakes are made. When your inner voice is telling you; "don't do this", "don't agree to these terms or conditions", "this is wrong and something doesn't feel right" - walk away. No matter how you are persuaded and coerced into doing something that you know full well is not going to end well - don't fold. Pull yourself together and simply walk away. Going to a doctor or hospital, if I have to take papers with me, or a disk containing CT scans or MRI images, I always make copies before hand, so that I still have the original safely at home. Often with busy doctor's offices and most certainly in large hospitals, it does happen on occasion that a file or letter goes missing. Although much material and data today is stored on computers, we still rely on paper work and hard copies to some degree. Always be prepared with copies of important paper work. You may still want to carry with you the original in case this has to be seen, but once verified, a copy should be suffice to leave in its place, the original safely staying in your possession. Often the copies are so good today, it's difficult at a glance to recognise the original, so I sometimes write in red pencil on the back of the original clearly distinguishing it from any copies. This may sound simple advice, but we've all been guilty at one time or another of not listening to that little voice inside saying "this doesn't feel right".

Poor balance & walking - 29th July 2013

I've seen on YouTube various clips and read articles on the Internet about Nordic Walking Poles. Many Parkinson's patients are finding these a great benefit in helping improve their posture, gait and overall movement. I was kindly given a set of these poles, and much to the amusement of my family, I ungainly attempted to walk the length of the corridor in our house. With little co-ordination I was unable to copy what I had seen others doing, that appeared so simple. It's all very well giving my family a good laugh, and I'm sure I must have looked quite a sight, but I failed miserably, looking like a disjointed robot, stiff and unsure of each step. However, the other day my sister-in-law came to the rescue, and helped me first of all adjust the poles to the right height, so my arms are at right angles to my body, and then suggested I try concentrating on one side at a time, before using both poles together. I tried her idea, and dragged one pole along the floor, whilst I concentrated on my right side, saying "right" out loud, as I took each step and moved the pole forward in my left hand as I moved my right foot. When I got to the end of the corridor, I swapped sides, so now focused on saying "left" I moved the pole on my right side as I walked. Once I have mastered each side by itself, I will hopefully be able to put both together and use the poles as they should be. I could already see that my posture straightened up as I walked with the poles, so will persevere and hopefully see some improvement.

The bright side of life - 30th July 2013

My husband and I (this sounds like the beginning of the Queen's speech) always try to look on the bright side of life. I think one of the things that attracted me to my husband all those years ago, is his sense of humour, and ability to make me laugh. I was laughing so hard yesterday my sides were aching. If I were to repeat what made me laugh so much it probably wouldn't sound funny today, but being able to joke and be silly in each other's company keeps us young at heart. Have you ever met someone who is your age, and yet seems so much older, or the other way around? I think it's all about attitude, and if you remain young spirited, this helps get you through tough times. It doesn't matter how old you are in years, but how young your spirit is.

I talked of the importance knowing first aid in my blog on 19th July, and yesterday I came across a marvellous "flash mob" dance by a group of firefighters, demonstrating saving lives with CPR (cardiopulmonary resuscitation). What caught my attention in particular was that they were using the famous Bee Gees song "Stayin Alive" to instruct people how fast one has to perform compressions to the chest by staying in beat with this particular song. When I took a first aid course some years ago, during one of the sessions we were taught this method using the very same, rather appropriate song. I'm sure the Bee Gees had no idea when writing what has become an iconic song from the disco era, it would end up being used to save lives. Take a look at this marvellous clip of firefighters who put their lives on the line every day for their community.

Parkinson's puzzle - 31st July 2013

Feeling under the weather, with very painful stiff joints, and arms that are weak and have no strength, as if someone has sapped all the power from my body, I found myself for the first time, with little to do. I couldn't even manage much writing, as the pain throbbed in my arms. Cooking which I love (despite being desperately slow now and have a tendency to drop things onto the floor which to no end delights the dog!) even this was too much for me to handle yesterday. My husband who always comes up with bright ideas, got out an old jigsaw puzzle of 1000 pieces which I haven't done for a long time, so this kept me occupied most of the day and took little physical strength. I used to love puzzles, and although managed to complete 3/4 of it by myself, I found I was suddenly stuck and appeared to be missing some pieces with straight sides for the edges. I left it unfinished on the dining table and took an afternoon rest. Upon getting up, I found the puzzle had been completed by my daughter (after all, who can resist a puzzle just crying out to be finished?). What was truly puzzling though (pun not intended) was that I had put pieces in the wrong places, so no wonder I had had a problem finishing it. I was horrified to see that I had such difficulty in doing a jigsaw puzzle, and one that I have done on countless previous occasions. Parkinson's is a particularly puzzling disease, taking away slowly but surely, all sorts of abilities some of which may sound inconsequential and unimportant, but actually indicate clearly how the disease slowly advances and takes hold.

Parkinson's Poet Prevails for Prize - 1st August 2013

I was very excited to receive the following e-mail and wanted to share my good news with you.

The indiePENdents

FOR IMMEDIATE PRESS RELEASE

Parkinson's Poet Prevails for Prize

Hightstown, NJ -- July 29, 2013 -- It isn't every day that a woman with such a debilitating disease as Parkinson's writes a Huffington Post blog or an award winning book. Parkinson's sufferers by definition are depressed and unable to function sufficiently to write a document of any kind. How much more difficult for one with Parkinson's to write verse?

Now, such a writer suffering from Parkinson's has written a book of poetry and received the mark of excellence award provided by IndiePENdents. This award is presented to self-published authors whose work is judged by three impartial peer judges.

Elaine Benton achieved this feat. From line one she captivates the reader. The challenges of Parkinson's are frequently explored, but with good humor. Her 38 poems are not a litany of woe. Her complaint about buttons is dealt with in this way:

Whoever invented buttons, should be severely punished or shot,

Does anyone with Parkinson's like buttons? I think not!

The verses of Elaine Benton are not smooth but need no apologies for it. They are written in concert with her constant shaking and stiffness, a reflection of her nature, as it were. It makes for great poetry.

Indicative of her humor is the poem on Holding Still. The X-ray technician, the photographer, and the lecturer all expect her to "Hold still." After exploring each request, she ends the verses, "Wow, a shot of vodka, right about now, I could kill!"

She captures her family support in one of her poems.

When I can't sit still, I do a Parkinson's dance,

My family join in, around the kitchen we prance.

I shake, rattle and roll, a sort of jitterbug or shimmy,

All of this exercise, should keep us fit and skinny!

Elaine says about her book, "I have met many patients, some not as fortunate as myself, for in addition they suffer from depression. My poetry has something to offer, giving words of comfort, humour and hope to other Parkinson's patients, and caregivers who can identify with my poems, whilst also creating greater awareness of this terrible debilitating disease to the general public. My poems," she says, "are both serious and light hearted, but all come from personal experience, straight from my heart to your heart."

About Elaine Benton: Benton was born with Gaucher disease, a rare chronic genetic disorder that she inherited from her parents. Diagnosed at the tender age of five, it would be many years later, when married and had given birth to her daughter, that the first ever medication for this disease was approved by the FDA. In 1991, she started to receive the long-awaited medicine, in the form of infusions that replace the enzyme that her body was missing. To date there is no cure for Gaucher Disease, but in recent years, some significant strides have been made.

As if having one chronic disease was not enough, at age 44, Elaine Benton was diagnosed with Parkinson's. Having now two incurable diseases, Elaine maintains her good spirits, and her sense of humor remains intact, as seen in this most unusual collection of poems. She also writes a blog for Huffington Post UK.

About The indiePENdents: The indiePENdents is a 501(c)3 non-profit organization dedicated to promoting good writing by self-published writers. The organization never charges fees for membership or evaluations, nor does it sell or promote materials or services. The three peer-evaluators found the book well written and well edited, which won Elaine the award of The indiePENdents Seal of Good Writing.

ideas@indiePENdents.org

Copyright © 2013 The indiePENdents.org, All rights reserved.

Life must go on - 2nd August 2013

Often when I invite family or friends over for a meal, to celebrate a birthday or some occasion, I am invariably questioned by guests if it wont be too much for me. I appreciate the thought and concern which comes from the heart, and that people recognise the extreme difficulties I face daily. Realistically I am never going to get better, for a degenerative disease over time takes its toll, however, stop a moment and try to understand and see things from my perspective. Of course I am no longer Speedy Gonzales in the kitchen and it does take me longer and a lot more effort to prepare food these days, but I still get enjoyment out of entertaining. Whilst I can, I want to continue having those I care about, over for a meal or coffee and cake. I am well aware that at some point in the future I may not be capable of entertaining, but whilst I am able, I want to, for life must go on. Socializing is a very important part of everyone's life, and if I were to refuse invitations or not have people over, this would have a tremendous detrimental effect, not only on myself, but for my husband too. The isolation felt by those suffering any chronic illness is a common problem. I can already see that several couples who we thought were friends, have slowly disassociated themselves from us, and are no longer in contact. I realise some people feel uncomfortable around a person who is chronically ill, not knowing how to react, what to say, and would simply rather not have to deal with an upsetting situation. I find this rather sad, showing poor character on their part. God forbid they should find themselves in similar circumstances with ill health further down the line. Will they then remember how badly they behaved? Therefore if I ask you over, it's because I want to and still can, so please just accept the invitation graciously.

Sitting with someone who always gets my mind working, inspires me to push the envelope and I must say has taught me a great deal over the years; we got into a long and thought provoking discussion. I was asked a rather controversial question which prompted me to write this week's article for The Huffington Post.

Response to your comments - 4th August 2013

My recent article on The Huffington Post most certainly got everyone's attention which opened quite a discussion from the many comments posted. Although I knew I was writing about a highly controversial topic, I did not expect to be inundated with messages, all with different points of view. However I see this as a positive response, since any lively dialogue that instigates such a wide range of perspectives is good. I believe any topic that evokes people to open up and speak is beneficial. There were several points that I was unable to mention in my article for restrictions of article length. Gaucher disease being a rare disease, it is understandable that not many people know about this particular disorder. I would like to clear up one matter that concerned several people who left comments. Although Gaucher disease is hereditary, it needs both husband and wife to carry the defective gene to pass on to their children. Today there is genetic counseling, and responsibly, my husband was tested and proved to be clear of this particular gene, therefore we knew our daughter would never suffer from Gaucher disease herself. It takes two to tango, and it takes two to create a child with Gaucher disease. So for those of you who thought I had irresponsibly and selfishly had a child despite my ill health, I state again; this does not affect our daughter's health, and she is thankfully healthy and will never suffer from Gaucher disease. I hope this clears up any misunderstanding. I appreciate all your comments and thank you for taking time to read my article. Communication and education are paramount in moving forward, giving us all food for thought.

As good as it gets - 5th August 2013

My husband glanced over at me and asked if I was OK. How does one answer such a simple question that is asked again and again with great concern and love. Suffering from Gaucher disease and Parkinson's, mother nature in her wisdom decided to add the menopause into the equation, and to top it off the other day, visiting the dentist, I ended up having a root canal. We have the nicest dentist who is gentle with a great bedside manner, not to mention is highly skilled, but as much as we love him, I'd rather not need to visit him quite so often, especially when I find I need a root canal. I have always cleaned my teeth diligently twice a day, floss and use mouth wash, but come what may, I always seem to need work done on my teeth. I guess a large part is down to one's DNA. You either inherit good teeth, or like me are cursed with on-going problems despite taking the greatest of care.

As a young child, I was always told off at school for talking too much, and I would receive a short whack on the knuckles with a wooden ruler from the teacher. I guess the day I stop talking it's time to get really worried! Even whilst I was in the dentist chair, after just having an injection that made half of my face numb, with gauze swabs inside my mouth, I still managed to talk and tell a funny story to the dentist making him laugh!

So in-between pain killers for Gaucher bone pains, Parkinson's medications, hot flashes as if a volcano suddenly decides to erupt inside me, to add insult to injury, I now have to eat soft food for the next few days having a rather sore mouth. I ask myself is this as good as it gets?

Guilt \- 6th August 2013

Feelings of guilt are expected and I believe normal when faced with diagnosis of Parkinson's, or any serious disease, especially knowing what one's family will have to endure in the years to come. In a moment of weakness I could easily slip into depression, feeling responsible and guilty at bringing this upon my husband. However the reality is that I had no idea until 6 years ago I would be diagnosed with Parkinson's. Feeling guilty or responsible does not help at all, for this is not something I chose. I didn't wake up one morning and think to myself, OK I'm going to have Parkinson's. Who in their right mind would wish for such a nightmare? Although there are times I feel bad for my immediately family having to put up with the many weird symptoms the disease throws at me daily, I try not to allow feelings of guilt to engulf me. If you allow it, guilt will eat away at you from the inside - an unhealthy scenario which benefits no one.

So onwards and upwards - day by day - step by step, this is all I can do. I endeavour to make the best of a bad situation, and hope that my misfortune has turned into something of value by being an advocate, offering support to those who find themselves in the same boat as myself, and ensuring the general public learn and understand about living with chronic disease. I refuse to sit back quietly, and will continue to write and make as much noise through my writing as I can. I may be one person with a small voice, but with the global Parkinson community I have become part of, together we can make a huge difference.

Put PD in its place - 7th August 2013

Parkinson's has no manners at all. It rudely intrudes without invitation, like the worst type of gatecrasher, who just refuses to leave. But fighting against this unwelcome guest is futile, and so I try to live "with" Parkinson's, but under my own rules. I will not let Parkinson's bring me down and destroy my spirit. I'm a fighter and will defiantly battle on. I have seen people give up, and once they have turned that dangerous corner where susceptibility welcomes hopelessness, it is a short journey to a place of no return.

Not that I believe in vampires or such, but indulge me for one moment, for I haven't lost my marbles and am going somewhere with this train of thought. Suppose a pale faced hungry vampire should turn up on your doorstep one dark night, you would no doubt grab a wooden stake and garlic to ward off such an undesirable visitor. I'm using this ridiculous scenario as an analogy, to express what you what you need to keep Parkinson's at bay. Keeping your spirits up, having support around you, remaining cheerful, hopeful, maintaining a sense of humour, along with taking the right medications at the allotted times, eating a healthy balanced diet and doing some form of exercise that you can manage without causing harm, are all things we can do to slow down and even improve one's condition. A wooden stake and garlic won't help us at all, but Parkinson's hates anyone who is positive, so when the symptoms start to take over, tell Parkinson's to go take a hike!

Leaving comments - 8th August 2013

After so many leaving comments on my recent article in The Huffington Post, someone asked me why rarely people leave comments on my personal blog. I am not totally sure of the answer to this, but it could very well be, that what I'm writing about daily, is what my readers are experiencing, and probably there isn't a great deal to add. Last week I was inundated with messages and e-mails from across the globe responding to a rather controversial article I wrote for The Huffington Post. Anything that inspires people to write, enter into discussion and bring forth such debate has to be a good thing. I spent two days responding to each e-mail and comment. However, one person asked me how to leave a comment anonymously, on my personal blog, and I am now wondering if anyone else is having difficulty. I would firstly like to assure you that your identity remains completely anonymous.

If you click on the word "comments" which becomes blue when highlighted, a box will appear where you place your cursor inside and write your comment. Upon completion click on "Comment as - Google Account" and it will give you several options, one of which is "anonymous". Click on this, and then click on "publish", after which your computer will ask you to type in a couple of words which you should leave a space in-between, that verifies you are a real person and not a computer. Once you've typed the requested words, click on "publish". Your privacy is highly important to me, so please know that by leaving a comment in this way, no one will know (including myself) your identity.

I value your comments and any questions or suggestions you may have, so please feel free to comment.

Where creativity reigns - 9th August 2013

The heart and soul of our home is the kitchen, where most of my creativity emerges, whether it be in the form of writing, or cooking; it is the center of the household. I always have pen and paper at hand for I never know when inspiration will arise. Listening to others talk often triggers a thought or poses a question and I scribble down a few words to remind me for later.

Having some ladies over for brunch the other day, was a lovely way to spend the morning. One of the ladies walked in with a big smile, much to my delight, holding a wisteria plant. I think wisteria is simply beautiful when in bloom, its large lavender coloured pendulous flower clusters are magnificent. Although this stunning climbing vine sadly only blossoms for a short time in the spring, it's just so magnificent, I have longed of having wisteria in my garden for years. So gently with much love and care, I planted this little new spindly looking addition to the garden, in the hope it will flourish along with everything else and I look forward to the spring when I'll be able to enjoy its full beauty. A number of plants in the garden were brought as housewarming gifts from family and friends, and as I watch each one grow, slowly covering the walls with a carpet of green leaves and blossoms, I am reminded of each person who has unwittingly become part of my enchanted garden.

Although I post my blogs at 07:00 each morning, I have been sitting out here in the garden enjoying the peace and quiet in the fresh morning air since 04:30 watching the sun rise. Parkinson's often robs me of a full night's sleep, despite the medications I take to help me rest. No doubt later on this morning, I will tire and possibly have a cat nap in a chair. It's simply too much effort to get back into bed again.

After receiving so many comments on my highly controversial article last week in, I felt compelled to write about Gaucher disease in more detail, so if you'd like to take a moment to learn more, please take a look at my article on The Huffington Post about Gaucher disease.

The rate of progression - 11th August 2013

What is it that determines the rate of progression with Parkinson's disease? I often wonder how this strange disease has so many variables, each patient affected in a different way, no two people with the same story. For example, take Michael J. Fox who was diagnosed at age 29, yet here he is today, aged 52 returning to work, starring in a new television show. What has kept Parkinson's at bay all these years - are there extraordinary circumstances that we do not know about, a regime of medications along with exercise? How is it possible that he is now able to return to work? The other end of the spectrum, is hearing about those diagnosed and within 7 \- 10 years rapidly go down hill and are sadly no longer with us. Were these cases a more severe form of Parkinson's, or is it down to attitude and that some patients simply give up hope?

What puzzles me is the vast difference between patients. Parkinson's is a chronic and progressive disease and yet some people live with mild symptoms for many years, where as others, such as myself, develop difficulties with movement quite quickly. Parkinson's is a particularly peculiar pesky disease - that's for sure!

Knowing when to stop - 12th August 2013

How does one know when it's time to stop driving? The loss of independence and pride often get in the way of making this very difficult decision. I have the greatest respect for an uncle of mine who decided on his own, at a fairly early age, to stop driving. No one prompted or suggested this to him; it was his own decision. Many people, in particular men (sorry guys, forgive this comment, but it's based on statistics), don't have the courage to accept with age their eye sight, especially at night, along with slowing reaction times and depth perception are no longer what they used to be. The thought of causing an accident, hurting oneself or endangering others is too awful to think of.

So if you are questioning should you still be driving, and that little voice in your head is telling you it's time to sell the car; listen and pay attention. It is far less painful and humiliating to accept this change gracefully if you make the call, rather than wait till its too late, maybe having caused an accident and being officially informed by a doctor or the Ministry of Transport that you are no longer permitted to drive. Doing the right thing is not always easy, but when it comes to safety - think long and hard.

Owning a car is a huge expense and what with the upkeep and ever rising prices of petrol, if you no longer work, it can actually be less expensive to take taxis when you need to go somewhere.

Frozen expression - 13th August 2013

"Masking" is one of the many annoying symptoms of Parkinson's and my family have now got used to the expressionless, almost blank staring look that occasionally takes over my face, with often one eyebrow raised, as if I am about to ask a question. My eyes barely blink sometimes and as a result they end up feeling quiet sore and sting. Masking can be very disconcerting to those who do not know I've got Parkinson's and possibly they think I'm just an unhappy cross looking woman. For those who know I've got Parkinson's, but are unfamiliar with this particular symptom, are usually quite confused and until I explain, for they are unsure of my mood and what's going on.

I had to laugh the other day reading what a fellow sufferer had written; because the masking effect makes one look depressed or in a bad mood, maybe this simply means that "Parkies" (as we fondly call ourselves) have upside-down smiles! Now if that's not looking at things in a positive light with a sense of humour, I don't know what is!

Public speaking - 14th August 2013

I was asked a very good question: "Why don't you use a Power Point presentation whilst giving a talk?" I realise in certain circumstances a visual presentation alongside a lecture, possibly showing graphs and such is helpful to an audience to grasp and understand a particular topic. However, for someone like myself, who talks from the heart (I never read, but merely have a piece of paper with one line headings, to keep me on track) I don't like having slides changing and shifting the focus from the speaker to a large screen. Eye to eye contact is so important when delivering a good talk, and capturing the audience's attention and maintaining their interest are paramount in getting your message across.

It has been scientifically proven that the brain reacts differently to reading bullets on a Power Point presentation, as the brain simply processes the langue and nothing more. However, if the speaker is telling a story, not only are the brain's language centers activated but also a part of the brain is engaged, following the story, bringing it to life as if experiencing it along with the speaker. Therefore speaking straight from the heart as opposed to reading out loud, and without the aid of fancy hi-tech presentations, the audience not only enjoy but remember the talk far better. This is only my personal opinion, but it's what works best for me.

As I suffer from Parkinson's I would never choose to hold a microphone, as the visual disturbance of my hand shaking disrupts the audience's attention. Therefore a microphone on a stand is an absolute "must" for anyone suffering Parkinson's who is giving a speech.

Toes with a mind of their own - 15th August 2013

Like many a Parkinson patient, upon waking, I find my toes on my left foot are painfully clenched, almost curled under making it difficult to walk. My neurologist asked me how long it takes between taking my first Dopamine tablet of the day for my toes to stop this involuntary curling. Never having paid attention to how long this lasts first thing in the morning, I decided to time myself so I'd have an answer for my doctor upon my next visit. It took just half an hour for the Dopamine to kick in, and my toes to relax somewhat making it possible to walk without the uncomfortable cramping. I have also noticed, as it gets close to the time when my next Dopamine tablet is due, my body appears to be expecting it, and I don't even have to look at the clock to see if the time is drawing near. I presume others experience the same thing.

Exercise of any form, and as much as you can manage without causing harm is an excellent way of keeping mobile and loosening that awful stiffness that encases one like an invisible plaster cast. With so many options, there must be a sport or exercise that you can safely participate in that will be beneficial. I know people who thoroughly enjoy attending dance classes or music and movement therapy especially catered for Parkinson's patients. Walking with Nordic poles, preferably on smooth even surfaces, any physiotherapy or exercises you can do at home, Yoga and swimming. I personally love to swim, but find it difficult to get to a pool by myself, and the undressing and even more so dressing afterwards once I am damp, is a major problem requiring help. I don't think it matters what exercise or sport you do, as long as you enjoy it and make it part of your daily routine, it will help maintain your mobility keeping Parkinson's at bay.

The world is your oyster - 16th August 2013

I come from the land where any crisis was solved with "let's have a nice cup of tea"! when children at the end of a meal would ask "May I leave the table please?" and business was done on a handshake. An old fashioned girl at heart, although I am only 50 years young, I sometimes feel as if I'm from an era that has long passed by where the pace of life was slower and one's family would come together to eat dinner in the evening, and talk and reflect on the day's events. Life seems to be speeding by and although I have slowed down considerably, thanks to the symptoms of Parkinson's, I wish I could slow time down a little too. There is much I still want to achieve, goals and dreams that I hope will come to fruition.

Often having used the phrase "The world is your oyster" I was interested to find this well known saying, is in fact a quote from Shakespeare's "The Merry Wives of Windsor". The original implication of the phrase is where the character "Pistol" is about to use violent means by way of a sword to steal his fortune (the pearl one finds in an oyster). Today we use this phrase without its original violent connotation to mean "the world is ours to enjoy". So despite living with Gaucher and Parkinson's (my two constant unwelcome companions) I will pay heed to Shakespeare's words of wisdom, for the world is my oyster, and it is yours too, so enjoy every moment.

When the world is half asleep - 18th August 2013

It is 03:40 and half the world is fast asleep, but thanks to Parkinson's, here I sit quietly writing as my family slumbers peacefully in their beds. My dog glanced at me, a familiar sight to her in the midst of the night, as I slipped into the kitchen and opened up my laptop. Insomnia is an annoying tiresome symptom of Parkinson's, and due to changes in my medication, I have until the last couple of weeks been sleeping a good 6 hours a night. But sadly, I see this was not to last, and the frustrations of insomnia have returned in full force. I'll share with you a poem I wrote a few hours ago.

Lost Sleep

In sweet dreams I would rest, perchance to sleep,

Till dawn breaks a new and the sun starts to creep.

My bed beckons, soft pillows call my name,

"Come fall asleep", a tormenting nightly game.

Yet vivid thoughts disturb taunting me,

Finally awaken, I'm released and set free.

Too hot, too cold, unable to fall asleep,

Restless, toss and turn, dawn begins to peep.

My mind's so busy, words as water flow,

Parkinson's harsh, no mercy it will show.

Thoughts come alive, at night in my head,

Insomnia takes over, can't slumber in bed.

My eyes barely blink, they begin to sting,

A flurry of words, comforting solace they bring.

Food for the soul, I'm nourished by writing,

This torrent won't stop, no sense in fighting.

Pen in hand words appear, I'm compelled to write,

They'll be lost if I wait for the morning light.

New day appears, cool fresh air hits my face,

The night has gone, the sun takes its place.

How I long to sleep, the whole night through,

To wake refreshed, and start a day that's new.

Written by Elaine Benton © 2013

The hardest thing each day - 19th August 2013

I think there are certain things that only another Parkinson's patient can fully appreciate and understand, one of which is, simply getting out of bed in the morning. This has to be the hardest action of the day for me, and probably to a healthy individual, sounds pretty pathetic. But trust me, if you were in my shoes (or should I say house slippers) one morning, you would immediately comprehend how incredibly painful and difficult it is to get out of bed after a night's sleep. If you could magically experience this for just one day, I don't think you would ever again take for granted, how you simply get out of bed each morning without a second thought.

Getting dressed is pretty difficult too, and requiring help from a family member is a little demoralizing, but I don't dwell on this and have to accept it and move on. My sister-in-law took me out the other day and it was a very welcome enjoyable outing. We stopped at a café for a break, where we chatted non stop. Popping into a clothing shop, my sister-in-law was of invaluable help. Firstly she assisted me in finding the right size and colour of long shorts I was looking for to wear around the house when it's especially hot weather. (Let's face it I'm no longer 21, so I wasn't about to buy short shorts that leave nothing to the imagination!) Magically she came across a pair with Velcro instead of a zip and the right length that modestly cover what should not be exposed at my age! A more perfect pair of shorts I doubt she could have found. There was no chair in the changing room, as so often is the case, but being tuned into my needs, she immediately got an assistant to bring one over. I find shopping for clothes is extremely exhausting and difficult to manage alone. It was a lovely morning and I appreciated her thought and understanding, not to mention patience. It's not easy taking someone out who is in my condition, but I can't tell you what an outing like this means to me. If you have a relative or friend who is housebound, it may not be your first choice of how to spend a morning, but believe me, that person will benefit far more than you can possibly imagine from you giving up a little of your time.

Fatigue verses tiredness - 20th August 2013

If asked, can you differentiate between being tired and suffering fatigue? There is in fact a huge difference and the causes are not the same. You may have slept a good six hours at night, but awake still feeling tired. Fatigue is as if someone has removed your batteries, and sometimes the fatigue is so bad I feel as if I could collapse. This is when I usually look extremely pale and unwell, prompting my husband to tell me to go and rest. Even though I may lay down in bed, unable to fall asleep, the mere fact of resting in bed, one would have thought should revitalize me, but it doesn't. I get up and the fatigue is still present.

Every activity takes energy, and as strange as this may sound, even something as simple as breathing, a Parkinson's patient expends more energy than a healthy individual. This is due to Parkinson's affecting the muscles in the chest and diaphragm. Every simple task requires a great deal of effort on the part of the Parkinson patient. Fatigue is often dismissed by doctors and not much attention is paid to this debilitating symptom, for it is far less visually disturbing than dyskinesia or poor gait. Yet many patients find fatigue is one of the most disruptive symptoms of Parkinson's.

It's strange how some patients thrive on exercise which appears to help alleviate fatigue, whilst others feel their fatigue is made worse by too much activity. It's a thin line to tread and a hard one to find the right balance. We are all aware that to maintain mobility, some form of exercise is necessary, but caution must be observed if the effects of too much activity become detrimental to one's overall well-being. Fatigue might also be part of Parkinson's disease itself, or possibly as in my case, I often attempt to do things I believe I can, when in reality, physically I can no longer achieve. Trying to describe fatigue to a doctor or someone in the family, is very difficult, as what I perceive, may very well be completely different for someone else. In other words, the many symptoms of Parkinson's make it very difficult to diagnose correctly ascertaining the cause of fatigue, for it is a complex disease. It's no wonder that many people without personal experience of Parkinson's know little about this disease. There is simply so much to learn and understand.

New Webcasts - 21st August 2013

I was contacted by Michael Margolis, a Television Producer from Los Angeles who is making a series of webcasts to connect the Gaucher community worldwide. The other night, Michael interviewed me over the Internet and I introduced myself explaining that I have Gaucher disease and Parkinson's and expressed interest in future webcasts, with the possibility of focusing one segment on the connection between Gaucher and Parkinson's disease. If you have Gaucher, or like myself suffer Gaucher along with Parkinson's and have any suggestions as to particular issues you would like to see included in future webcasts, please send me a message and I will pass on this information. I think this could be a wonderful opportunity of hearing from fellow sufferers around the world, making connections and creating an international community that will strive to offer the latest medical information and news. Keeping up to date and informed is paramount when suffering any chronic illness. I was delighted to touch base with a fellow Gaucher sufferer, and appreciate the opportunity in being part of this new innovative project.

Yoga for Parkinson's - 22nd August 2013

I was asked to review a book entitled "Yoga and Parkinson's Disease" written by Peggy van Hulsteyn. Yoga has been a daily part of Peggy's life for some forty years, and since being diagnosed with Parkinson's 12 years ago, she has found Yoga to be invaluable in maintaining mobility, flexibility, strength, balance, and better posture. Meditation which goes hand in hand with Yoga, is a great way of relieving tension, anxiety, stress and depression, which we all know are major concerns when suffering Parkinson's. Whether you meditate in the traditional sense, or simply potter around your garden as I do, which is my form of meditation where I lose myself immersed in a repetitive calming activity that I enjoy, it's benefits are clear to all. Peggy's delightful sense of humour speaks through the pages of this beautifully written book. The author's fighting spirit shines through, and any fellow sufferer can relate to her amusing comments. The explanations along with photographs are extremely clear and simple to follow, but are fairly advanced and not for a beginner.

I would recommend this book only to those who already have some background and experience in Yoga, or if you are attending a Yoga class especially tailored for Parkinson's patients, which has the added advantage of a social aspect being with fellow sufferers is of great support, Peggy's book then becomes a great additional guide. If you have never attempted Yoga before, I strongly urge you to begin by participating in a group for Parkinson's patients, where you will be helped and personally supervised as you learn the various poses and sequences that are deemed appropriate and safe for your individual needs. When it comes to any sport or exercise, make sure you consult with a professional, whether it be your family doctor, physiotherapist or neurologist, for the aim is not to participate in something that is not safe and may cause harm, but to improve your quality of life.

A quiet time of the day - 23rd August 2013

Here I sit once again at 04:30, before the sun has shown its face, listening to the cricket's unmistakable song, which sounds like Mother Nature's attempt at Morse code. I can hear a rooster in the distance making his first call of the day, the alarm clock of the animal world. It is still dark outside, but soon the sun will show its sleepy head and begin to illuminate all that is blanketed in darkness, turning night into day. Another day to struggle through with Parkinson's, my annoying companion; hopefully a good day, with more "ons" than "offs". For those of you unfamiliar with this term, it merely means when the medications are working, (which is referred to as an "on" period) and the times where medications cease to work, rendering the body immobile and unable to function - this is understandably termed an "off" period, almost like someone removing your batteries leaving one like a motionless toy robot. The quiet and stillness of this early hour brings with it a calm that soothes my mind, allowing my body to slowly loosen up from the nightly episodes that leave my body painful and stiff, every movement requiring great energy. The cool morning air refreshingly hits my face as I open the windows. My body is waiting for 06:00 when I start my daily regime of tablets, that first dopamine tablet that sets me off for the day. Having been given several books on Parkinson's to review, I have a mountain of reading to do, and so I will leave you here for today, and hope wherever you are in the world, you find a tranquil peaceful time that is yours alone, to quietly contemplate or meditate, before the day's busy schedule takes over.

Apathy and depression - 25th - August 2013

Due to the large range of symptoms Parkinson's patients manifest, some of them naturally overlap, making it difficult for any doctor to diagnose. Fatigue being a common symptom not just of Parkinson's but many disorders, can be viewed as the patient being apathetic or depressed. There is a huge difference between fatigue, depression and apathy, none of which should be bundled together or confused. Depression can be treated with various antidepressants, but if wrongly diagnosed and the patient is suffering fatigue and apathy, then the antidepressant is not going to work. I believe it is therefore crucial, when seeing your neurologist, to paint a clear picture (and I don't mean arrive at his office with easel, paints and brushes) but to express in the best way you can exactly what you are experiencing, being open and speaking honestly about your concerns. This is where you have to be your own advocate, for although it is advisable to attend all doctors appointments with your caregiver, spouse or someone close, they may have a very different view on this particular element of the disease.

Masking also can give the impression that a person looks bad tempered, cross or down - when in fact their mood might be perfectly fine, simply the "masking effect" projects a different picture. When I feel my face freeze, I know I have a blank expression as if I don't know what's going on around me, yet my mind is sharp, I have complete clarity, and am able to express myself whether speaking or writing. In other words, don't jump to conclusions and judge when you are in the company of someone with Parkinson's.

The stigma of hallucinations - 26th August 2013

When you hear the word "hallucination" what does this conjure up in your mind? Do you immediately think a person is losing it? Would you assume they need psychiatric help? Does the mere word make you feel uneasy? If you've said "yes" to any of these - let me enlighten you about a subject drenched in stigma and misinformation.

I experience occasional auditory and visual hallucinations. Auditory hallucinations are simply noises such as a telephone ringing, or a bang or sound in the house, or sometimes distant talking as if someone is nearby but not clear enough to establish what is being said. These auditory hallucinations should not be confused with someone suffering schizophrenia who hears nasty menacing voices in their head talking directly to them. These are two very different things and important to understand the difference.

With Parkinson's there can also be fleeting visual hallucinations which can be a vision of a dog or cat running by in the garden or a person who has just walked quickly by. They only occur on occasion, usually lasting for just a few seconds, and are not present all the time.

At the beginning I didn't realise they were hallucinations at all. It was only when at a girl friend's house, did I keep telling her someone was ringing the bell at the front door, which she could not hear at all, and upon opening the door we found no one there, did I realise this was an auditory hallucination.

These auditory and visual hallucinations are not frightening, nor disturbing, and most definitely do not mean I'm going crazy! These strange yet harmless hallucinations are merely a side effect of the pills I am on, and were I to stop taking my Parkinson's medications, the hallucinations would immediately cease. Generally people don't like to admit they are suffering these odd side effects of the medication for fear of ridicule. As soon as people hear the word "hallucinations" they become wary and judgmental, so it's important family and friends realise I am not losing my marbles. Parkinson's is a complex disease where symptoms and side effects can cloud the picture. This is why education is so important preventing people running in the other direction from something they know nothing about.

Defining Symptoms - 27th August 2013

I have had a number of e-mails asking to clarify the difference between various symptoms. I would like to stress I am not a doctor, merely a patient sharing my experiences with you, but hope the following descriptions help explain.

Apathy: Not caring and disinterested, having reduced sensitivity and emotions, a lessened interest in things that used to matter.

Dementia: A decline in intellectual function, unable to retain information, leading to some degree of social impairment as the result of reduced memory or problem-solving abilities.

Depression: A collection of several symptoms, which can be confused with other symptoms. Continual sadness or an inability to feel pleasure are the main features. Depression also may include: fatigue, poor sleeping, weight loss or gain, soft voice, lack of patience and irritability.

Fatigue: A sense of immense lack of energy, which is completely different from feeling sleepy. This is a very common and debilitating problem with Parkinson's.

A patient may suffer from just one or two or all of the above, but these symptoms should not be confused with each other - they are individual, and need to be treated as such. To give you an example of how easy it is to confuse the above symptoms and come to the wrong conclusion, here is a simple example: I'm often in chronic pain, therefore someone who does not know me, could easily think I'm depressed, since chronic pain makes one understandably irritable, it's not easy to smile when in terrible pain, it impedes sleep, induces lack of appetite, and who has the strength to talk loudly or enjoy an activity that normally would bring pleasure. A neurologist certainly has his work cut out, ascertaining the correct diagnosis.

Making the Connection Between Brain and Behavior - 28th August 2013

I was recently asked to review a book entitled " Making the Connection Between Brain and Behavior. Coping with Parkinson's Disease, Second Edition" written by Dr. Joseph Friedman. As an author and advocate of Parkinson's, I found Dr. Joseph Friedman's book explains clearly, in simple language allowing everyone to easily understand this disease. Dr. Friedman confronts the issues that are generally not talked about so openly, but play a huge part in the daily lives of sufferers. Most patients and caregivers know a fair amount about the symptoms and side effects of medications, but this book delves deeper enabling the reader to identify what is actually happening. With great empathy and insight he seizes the reader's attention immediately, and as a fellow Parkinson's sufferer, I found it hard to put the book down. Dr. Friedman has complete comprehension of the disease with its many facets, some of which overlap, sometimes making correct diagnosis difficult. This book is an absolute MUST for anyone suffering Parkinson's along with their families and caregivers. I highly recommend reading Dr. Friedman's book who is most perceptive, appreciating what patients and families go through and the invaluable information necessary to help them cope. Dr. Friedman's book and contribution is an asset to the Parkinson's community.

Biggest fears hold us back - 29th August 2013

Believe it or not, my biggest fear was never of dying, but of public speaking. This may sound absurd, but I know for a fact it is many people's biggest fear; to stand up in front of an audience, all eyes and ears upon you. When my book "Parkinson's, Shaken, Not Stirred" was first published, such interest was shown, that as an author, I found that writing and public speaking suddenly went hand in hand. Left with no choice other than to dive straight in at the deep end, I began taking on public speaking engagements. I have to add at this point, that I received some extremely helpful advice regarding public speaking from a lovely lady who lectures all around the world. I listened and took in every word of guidance she gave me which was of enormous help. Her husband is a published poet and screenwriter, and he gave me the confidence and tools to move forward with my book. Although I have already thanked them both for the wonderful encouragement, support and instruction, I would like to publicly say THANK YOU, for in a way, you are both responsible for this amazing journey I find myself on.

I received such an incredible response to my book, a collection of poems written from personal experience, I thought to myself, I have nothing to lose, since I would be talking about a subject, that let's face it, I know intimately well: living with chronic illness. I expected to be nervous the first time I spoke in public a few years ago, but strangely I wasn't, for I was so focused on getting my message across, I think I forcefully cast fear aside, calmly stood up and told my story to a hushed audience. Since then, I've spoken many times, to various audiences at home and abroad, and as with anything in life, the more you do something, the better you become. It is almost second nature now and I've gone from strength to strength. Getting over my fears and being the best I can be has pushed me to do things I would never have dreamt of doing. Fear holds so many of us back in various ways during our life. Don't let fear of the unknown or something new dictate your future. You can be so much more if only you allow yourself to have faith in your abilities and bravely take that step forward.

Alone in the middle of the night - 30th August 2013

While you lay peacefully sleeping in your bed, comfortably resting and lost in some pleasant fanciful dream, I pace the house, as insomnia has returned to drive me to despair each night. It's 01:00 and I'm wide awake after just three hours sleep and it's unlikely that I'll get back to sleep again. Sitting next to my bewildered dog who probably wonders why I'm up already and is it somehow magically morning so soon? She looks at me hopefully, for if it's morning, then it's breakfast time - the first snack of the day!

You know how we all sometimes experience something strange, a weird co-incidence, or an odd event, and how ever funny it appears at the time, when trying to recount it later to others, the humour of the situation is somehow lost along the way. I had the funniest morning recently and spent much of the time laughing and giggling. Even thinking about it now, I can't help but smile. I shared this highly amusing episode with someone special and close to my heart, and wanted to merely say how blessed I am to have you in my life. As they say in the films "What happens in Vegas, stays in Vegas". So although I would love to tell you a hilarious tale, I'm afraid it wont relate well, for what happened that particular day, wont pass my lips come what may!

Here I sit talking to you out there, who ever you may be. The nights are long and lonely, discomfort and pain discourage me from going back to bed, where sleep evades me, and knowing full well I will end up disturbing my sweetheart of a husband. If I could turn back the hands of time and somehow intercept Parkinson's before it grabbed a hold of me, like a flash I would be there. What was the very moment that Parkinson's awoke in my body? What happened to trigger this unwanted pest that demands attention 24/7 like a spoilt child? I should tell Parkinson's to go and stand in the corner and take a "time out", but it is the late hour that is talking, for we all know Parkinson's has a mind of its own and plays by its own rules. I didn't sign up for this game, and don't want to play anymore. Can I simply raise my hand and be dismissed. I wish it were that simple.

The Truth - 1st September 2013

The first of September for me always marks the end of the summer months and the beginning of the cooler weather that autumn will bring. I welcome the changing seasons as they mark the passing of time, and naturally an alteration in one's wardrobe too. All those sweaters stored away on the top shelf alternate with the spaghetti stringed summer tops, and open sandals are replaced by waterproof closed in shoes.

Nothing stays the same, nor should it. We all grow older, hopefully a little wiser, but nothing remains static. Most people don't want to hear the honest truth - they'd rather not know. Why is the truth so hard for some to bear? I have been writing for two years, each day, bearing my soul through this blog in the hope of touching others who are in similar circumstances. If I were to coat everything in sweet frosting, look at life through rosy tinted glasses, my writing would be pointless and mean little to anyone. Sometimes shocked at what I write, people I know personally, are unsure how to relate to me and delicately avoid talking about a particular article or topic that makes them feel uneasy. I'm still the same old "me", but with a insatiable thirst to write about issues that usually get brushed under the carpet. There should be no topic too embarrassing or delicate to discuss. When chronically ill, one's view of the world is understandably quiet different from someone who is healthy and strong. I believe in talking openly, frankly; communication being fundamental. Having a full grasp of the situation, knowledge and education are paramount when dealing with any chronic disease.

Had I not gone through all that I have in my life, I more than likely would not be doing what I am today, as an advocate for Gaucher and Parkinson's disease. I think it is often the misfortunes in life that mould us into the individuals we become. It is life experiences that make each person unique and enable us to feel empathy for others. Of course, in a heart beat, I would rather not have Gaucher and Parkinson's and lead an entirely different life, but then I doubt very much I would be the person I am today. I guess you can't have your cake and eat it!

It was Parkinson's - not me! - 2nd September 2013

Although Parkinson's has robbed me of many things that I enjoyed doing, despite being extremely slow and taking a great deal of energy, I can still manage to bake a cake or prepare a meal. I used to do a lot of cooking, every day preparing fresh food, trying new recipes making a three course dinner in no time at all fit for a king, but today things are quite different, and I have to be satisfied with what I can manage to do. We used to have dinner parties all the time years ago, but now I have to carefully plan the meal ensuring the least amount of work, foods that can be prepared ahead of time, and several days between entertaining, giving me time to recover.

Running low on baking ingredients, my husband took some time out of his busy day yesterday to take me to an amazing shop; the Mecca for anyone passionate about baking. Walking into the shop, it's like an Aladdin's cave filled from floor to ceiling, wall to wall with every product and gadget related to baking. I could happily spend hours there perusing every shelf at great length. This is one of my favourite shops and the owners know me well, for I have been going there for many years. As I picked up a bag of dark Belgium cooking chocolate, I carelessly held it by a corner, and before I could avert calamity happening, the bag tore open, spilling all the delicious chocolate pieces onto the floor. I stood holding the empty bag, looking horrified at the mess I had made, not to mention the terrible waste of precious top quality chocolate. The shop owner, hearing my dismayed gasps, came running to where I stood frozen to the spot, apologizing profusely, and embarrassed at my carelessness. She very sweetly told me not to worry, calmly took a fresh bag of chocolate from the shelves and led me out of the aisle that lay strewn with luscious chocolate, lest Parkinson's and I cause any further commotion. Getting back into the car, clutching my purchases, my husband jokingly said "I can't take you anywhere twice except to apologise!" I think it will be a while before I can show my face again in my favourite shop!

Linda Ronstadt - 3rd September 2013

I was saddened to hear the news recently about Linda Ronstadt, an American popular singer whose renowned and loved songs I grew up with in the 70's, has been diagnosed with Parkinson's in 2013. Sadly this lousy disease that steals many of our abilities and the things we love to do and excel in, has taken her amazing voice and ability to sing. For so many years she has brought joy around the world with her iconic songs and one of a kind voice which led her on a remarkable career. Sadly at the age of 67 Linda has had to retire for she can no longer sing due to Parkinson's. I can barely imagine how devastating an effect losing one's ability and an incredible talent that has been a life time's career, but Parkinson's doesn't care if you are rich or poor, young or old, a regular person or someone famous. This unpredictable vicious disease knows no boundaries and steps in uninvited. There is one particular song that comes to mind when thinking of Linda Ronstadt; Blue Bayou". Linda I wish you well, and may you have more good days than bad, and the support of family and friends around you. Thank you for all the wonderful music you brought into so many of our lives around the world over the years.

Parkinson's doesn't get easier - 4th September 2013

When I hear people recounting their first symptoms, which led to being diagnosed with Parkinson's , the initial few signs are often mild. However as time goes by, Parkinson's has a cruel secret strategy, and other symptoms begin to appear, so what started out as merely an inconvenience or irritation, can quickly escalate to a debilitating and downright unpleasant situation. I am fighting with every fiber of my being, with every breath I take to get through each day. I dread the nights for quite often insomnia prevents me from a good night's sleep, and by morning, I am exhausted, yet still unable to rest. If there is a God somewhere watching over us, why isn't he listening to my prayers? Is he on a break or out for lunch? Parkinson's continues to harass me, for it's as stubborn as I am, and won't give up.

However I refuse to let my ill health drag me down, and won't let its suffocating effects leave me self absorbed or bitter, detaching myself from all the beauty and wonders that life has to offer. I am resolved in staying positive, enjoying spending time with my family, friends and grasping life in both hands.

All I have to do is take one look at my husband's face, and I am strengthened in spirit, for I long to grow old by his side. He is the love of my life, my soul mate; with the patience of a saint he is giving, loyal and steadfast. His moral character, compassion and heart of gold give me reason to live. With a great sense of humour, his spontaneous fun lift us in tough times, and his courage and determination support me like a suit of armour. So maybe God is watching over me after all, for he sent me an angel of a husband to be by my side.

It's been 2 years! - 6th September 2013

Today will be 2 years exactly from when I started writing a daily blog on 6th September 2011. To mark this second year, as I did last year, the entire entries of my blog will be made into a book, which you may download FREE from Smashwords.com. As soon as it is up on-line and available, I will let you know. My intention all along has been to offer support to those who find themselves in the same position as myself and to educate, bringing greater awareness to Gaucher, a rare disease most have not heard of, and Parkinson's, a common disease that hits millions around the world. I have tried to inject some humour as having Gaucher and Parkinson's is far from a picnic, and hope you have enjoyed and learnt something along the way. I would like to thank each of you for joining me on this journey, but don't worry for it is far from over, and tomorrow is a new day. I will continue to write and be an advocate for both diseases for as long as I am able. One day I will no doubt have to hang up the two hats I hypothetically wear, but not just yet. I still have much to do, so join me again tomorrow, and together we'll make it through another day. One day at a time, step by step - this is the voyage in life I've been assigned. I didn't choose this path, it rather chose me.

May this coming year for us all be a healthier and happy one, and who knows maybe a cure for Parkinson's is closer than we think.

It is once again Friday and the weekend is upon us. My latest article on The Huffington Post is about "Who takes care of the caregiver?"

Never take good health for granted – it's a precious gift!

Biography

Elaine was born in England writing poetry and short stories since she was a child. Diagnosed at the age of five with Gaucher disease, and at the age of 44, diagnosed with Parkinson's disease, battling two diseases Elaine's writing is inspirational and quite extraordinary.

Elaine's first book "Parkinson's, shaken, not stirred" is a collection of poems aimed at offering support and comfort to fellow sufferers and caregivers, relating to their daily struggles.

From personal experience she has written with stark honesty and humour, something patients and doctors rarely get to read which has captured world-wide attention. Elaine pours her heart and soul into her writing, giving a new perspective from the patient's view, which holds a strong message of hope, living a full happy life despite ill health and adversity, whilst bringing greater awareness of these two diseases to the general public.

Elaine writes a daily blog reaching out to Gaucher and Parkinson's sufferers, about varied topics related to living with chronic disease and this is the second year that the entire entries have been collated into a book which is available FREE on smashwords.com

http://elainebenton.blogspot.com/

www.elainebenton.com

This biography was provided by Elaine's representative.
