

### I'll Blog till I Drop

### Elaine Benton

### Published by Elaine Benton at Smashwords

### Copyright 2010 Elaine Benton

What began in the middle of a night back in May 2011 with a few lines of poetry was then turned into a book: "Parkinson's, shaken, not stirred!", ultimately leading to a Web site being created along with writing a daily Blog. My aim was to offer support to fellow sufferers and caregivers. These are the blog entries I wrote so that others could follow my journey of living with Gaucher and Parkinson's disease, which I would like to share with you.

Welcome to my Blog – 6th September 2011

Something big is going on here......it's as if I've started a journey, but simply don't know what my destination is. Things are happening in all directions, almost as if destiny or fate has stepped in and is leading me by the hand. All this started from writing a few lines of poetry that happened to float into my mind in the middle of the night. One of my poems is entitled "Life is Strange", well it doesn't get much stranger than this! I initially wrote these poems, hoping they would give support to other sufferers. Little did I realise, that so many others could identify with what I had to say. I am overwhelmed by the wonderful positive response my book has received. It is truly heart-warming.

Going Out – September 9th 2011

My husband and I went last night to a wonderful wedding. I love weddings, and usually would stay until the very end. Life is hard enough with daily struggles, coping with chronic disease, and even if you look in the newspapers, unfortunately there is little positive or uplifting news to read. Going to a wedding, whether family or friends; watching a young couple getting married, is a joyous occasion. An opportunity and affirmation to feel that the future holds hope. Sadly we could not stay as long as we would have liked, as I tire very easily and the loud music and large number of people was very hard for me. This is one of the drawbacks of Parkinson's disease!

Time Warp – September 11th 2011

Well it is the beginning of yet another week. I am sitting here attached to the I.V. having my Gaucher replacement therapy treatment. Attached to an I.V. it is a little restricting, so I am in front of the computer, writing to you - whoever you are! I sometimes wonder if life speeds up as one gets older - as if in some type of time warp! My life seems to be at full speed ahead right now - just hope I can keep up. So whoever you are out there, have a great day and as Spock would say, "live long and prosper"!

Laundry – September 12th 2011

I think we have a "magic washing basket", for no sooner has it been emptied, than it magically refills itself with dirty laundry! I am no longer physically able do the laundry, so unfortunately this task now falls on my daughter. When emptying the washing machine, we often wonder why we find only one singular sock! Where did the other matching sock go to? It's as if there's a secret sock society and one by one they disappear, or perhaps the washing machines eats them; but the weird thing is, they're never found! Does anyone else suffer from missing socks?

Tip of the Day – September 14th 2011

If you are on a lot of medication like me, you probably also have a pill box marked with the days of the week, each section holding one day's medication. However with Parkinson, and I'm sure the same applies to many diseases and their medications, pills often have to be taken at specific times during the day. To remember to take pills at unusual times, such as 11:30, or 15:30, I would sometimes forget, ending up taking the medication late! We had the brilliant idea (I expect many of you have already thought of this before we did!) of setting the alarm on my mobile phone, which goes off daily at the required times when I should take my medications. This way, I can't forget. It's been such a help and I think it's the little things like this that can make a small improvement to one's day.

Sitting Comfortably – September 16th 2011

Sitting in a comfortable chair is so important, whether you are ill or perfectly healthy. The settee we had was far too low for me to sit down, and nearly impossible to get out of, apart from not being very comfortable. We decided to go 'chair shopping', and sat in quite a number of armchairs before choosing one that felt really good. The shape, size, angle, depth and height, all are important factors, and I'd advise comfort over style anytime. Are you sitting comfortably?

Soft Back Book has Arrived – September 17th 2011

Things have been pretty hectic the last few days, and we finally collected the first edition of my book in soft back copy from the printers. It looks great, and as I sit here typing to you, I am surrounded by stacks of books. So many people wanted to have an actual book that we simply had to get it printed. The printed version has black and white pictures inside (which do not appear on the Kindle version), so anyone out there who would like a soft back copy, just press on the PayPal button on my Home Page, and you will receive one as soon as possible. Have a good day where ever you may be, and do something for 'YOU' today, that brings you joy and makes you smile!

Time Speeding Up – September 18th 2011

In today's world, we're under such stress, everything is accelerating so fast. Technology has vastly improved our lives, but often I feel we've forgotten how to appreciate the simple small things in life. Wouldn't it be nice to occasionally slow down the pace, so that one could truly enjoy and take delight in family and friends? We live by our diaries, trying to find time for people we care about, even having to squeeze in some time for ourselves. I wouldn't like to be young again, I'm perfectly happy being 48, but if I could magically slow down time, just a little, so I could fully enjoy this 'journey of life' we're all on, I would at least then be able to admire the passing scenery! So I have put aside things I have to do today, and am going to make time to have coffee with a dear friend. I hope that you can manage to do the same today.

Amazing at 97! – September 19th 2011

Visiting a Retirement Home, I met a charming lady who was 97. I watched her walk down the corridor holding tightly the handrail as she went. She was very unstable on her legs, and I couldn't help smiling at her insistence, as she held her head up high, trying to remain dignified as she wobbled ungainly making her way to the dining room. I asked a nurse who was standing next to me why this lady didn't use a walker or at the very least a cane. I was told she absolutely refuses to be seen walking with a cane. So many people I have met are too proud or vain (sometimes a little of both) to use an aid if they need one. I am half this lady's age, and I don't have a problem using a crutch. I have been walking with a crutch for four years now, and without it, I would have fallen many a time. I am unstable on my feet due to the Parkinson, and have fragile bones from the Gaucher! The last thing I need is to fall and break a bone. Using a crutch is a necessity for me, and also makes others around me aware of my situation, causing them to pay attention, not to push, or if young children are running around, not to bump into me. If you need a cane, crutch or walker, even a wheel chair, it's for your own safety and quality of life, so just take a big breathe, and accept change, don't look at it negatively, but as a positive aid that will help you. Put your vanity and pride aside, and think about what's really important. I am quite sure this charming 97 year old lady would appear no less lovely with a cane!

Lost Sense – September 20th 2011

Losing my sense of smell, being one of the early signs of Parkinson's is very annoying to say the least. I used to know when a cake was ready just by using my nose. Now I have to rely very much on my kitchen timer, otherwise I would be serving my family burnt offerings. How I miss the smell of freshly baked bread that is still warm, herbs that have just been picked from the garden, the delicious intoxicating smell of chocolate, a powerful fruity bouquet of a good wine, freshly mowed grass, and smelly garlic bread strong enough to keep away the hungriest of vampires! All of us are guilty of taking things for granted, and only once they're gone, do we truly realise what we've lost. So when you smell something good today, appreciate your sense of smell.

Getting Wheels – September 21st 2011

Getting a wheel chair was a huge step for me. Unfortunately I have reached the stage where I can no longer walk around a shopping mall, or along the promenade at the sea front, or join in on day trips with my family. My legs just don't want to know, it's like they've gone on strike, and they don't even belong to a Union! So it was either being left at "home alone" (sounds like a good title for a film!) or getting a wheelchair! Well I wasn't about to be left out anymore, so one evening, we went to a shop along with the measurements and specifications the physiotherapist had taken for me, and the right wheelchair was chosen. Sitting in it, I felt really strange, almost surreal. I've sat in hospital wheelchairs, and at airports, but never been in a shop with the express intent on buying one for myself, to take home and keep! It took me a few days to get my head around this, but seeing it here at home, I came to terms with my new "chariot" (after all, many great ladies in history had their chariots - Helen of Troy, Boadicea, The Queen of Sheba - it's just mine doesn't come with horses!) It's been so long since I was at a shopping mall, now I have my "chariot" I can't wait to go! Although I suspect my husband's credit card is shuddering at the thought!

Have a Good Weekend – September 23rd 2011

Why on a golf course, is having a "handicap" is a good thing? Being disabled, the word "handicap" doesn't summon up a positive image in my mind when playing sports. Does this mean that disabled people would feel at home on a golf course? I somehow doubt it, although I like the idea of whizzing around in one of those electric golf carts! Whatever you are doing this weekend, have fun, and take time to rest, re-charge your batteries, and enjoy being with those you love. Wishing you all good health!

Who Doesn't Love Ice Cream? September 24th 2011

I don't know if as we get older that one's tastes simply change, or that some of the Parkinson's medications I'm taking, are affecting my palette.

I NEVER used to eat ice-cream, and now love it. Of late, I would quite happily pass up eating a healthy nutritional meal to eat an ice-cream sundae, topped with peanuts, pieces of fudge, not forgetting the warm dark chocolate sauce liberally poured over the top. Let's face it; if you're going to be "naughty", then you may as well do it properly! I don't do anything by halves! Just in case you are wondering, I have it on very good authority, that there are absolutely no calories what so ever in this devilishly delicious decadent desert!!!! (If you believe this, you'll believe anything!) I always used to eat water melon only at room temperature, but now thoroughly enjoy it cold straight from the fridge. Go figure! I guess change is good, and one should embrace it, but I'd be interested to know if anyone else is experiencing similar odd changes regarding food, either due to medication, or that like me, you are no longer a spring chicken!

Safety First – September 25th 2011

How does one know when to give up driving? It's a difficult question and a hard call to make. No one wants to lose their independence, but the thought of causing an accident, and hurting someone, makes me stop and seriously question my competence and ability. I stopped driving at night two years ago and now only drive short distances within our little village. I have a feeling that my driving days are numbered, and it won't be long before I hand over my car keys. When one's judgment and reactions aren't as quick as they should be, and distance perception is impaired, I think it's time to call it a day. My life is changing, and I have to accept the fact. We all have to face things in life that we'd rather not, but when it comes to safety - there is nothing to debate.

Sleepless Nights – September 27th 2011

Like many Parkinson's patients, I can't sleep at night. If I do manage to fall asleep, it is only for a couple of hours, and then I wake up. Trying to get back to sleep again is frustratingly difficult. Sometimes from sheer exhaustion, I will sleep a few extra hours, but sleep is always disrupted, and I now envy what I took for granted; a simple 8 hours uninterrupted deep refreshing sleep! The other night, I was in bed staring at the ceiling, and realising I was not going to fall asleep, I decided to get up. It was 02:30, so I tried to make as little noise as possible, trying not to disturb my family. I entered the kitchen so quietly, that I made our dog jump and for a split second she thought I was an intruder. She barked fiercely baring her teeth, scaring the living day lights out of me! I quickly talked in a gentle voice calling her name, to assure her it was just me, and not to attack. Thankfully, she realised within seconds, and stood down. Wow was she scary. I wouldn't like to get on the wrong side of her, that's for sure. I may be chronically ill , but I clearly don't have a heart problem, for seeing a Dogue de Bordeaux ready to attack, barking, and showing those large fangs with 'shoe strings' of slobber hanging from her huge open jaw, would be enough to send some people into cardiac arrest!

Newspaper Article – September 28th 2011

Today several articles appeared simultaneously in various newspapers about my story and the collection of poems. It has been very hectic here, the phone hasn't stopped ringing, the e-mails continue to pour in, and interest in my little book with its big message seems to be spreading fast. Several months ago, when I started writing the first poem, I had no idea it would touch so many people near and far. Like throwing a stone into a pond, the rippling effect continues and I hope my "happy gene" spreads to you all. Wishing you good health.

Rhyme or Reason? – October 1st 2011

When diagnosed with Parkinson's four years ago, I found myself searching for rhyme or reason as to why I would have Parkinson's on top of Gaucher disease. Surely one rare chronic disease is more than enough for anyone to have. But clearly I was destined to have Parkinson's too! Whilst companionably sitting with a close friend, chatting over coffee in her beautiful garden, we tried to fathom out why on earth this was happening to me. I always believe that things happen for a reason, but coming up with a plausible reason, was harder said than done. Sometimes things aren't clear at the time, when you are immersed, and only in hindsight are we all so much wiser. Yet here I am four years later, suffering this degenerative disease 24/7, with great determination and a strong fighting spirit, I simply refuse to give in. Could having written this collection of poems that has now become a book, be my purpose? Was this the plan all along? To give a voice to those who are unable or are afraid to express their deepest feelings? Although this book tells my personal story, many people relate to it, meaning I am not alone. In some way we all share the same difficulties, fears, trials and tribulations that life throws at us.

YouTube – October 3rd 2011

Well I never thought I'd see the day when I would appear on YouTube! But I guess there comes a time in everyone's life when you say to yourself, "Oh to heck with it, I'll give it a go". After all, having Parkinson, one is not afforded the luxury of 'dignity' as the disease strips this away far too quickly, so I had little argument, when the idea was proposed to me. Today's technology has come a long way since I was a child, and what today's generation take in their stride, seems on the verge of miraculous to me. How I am able to sit here at the kitchen table and contact people from all over the world, at the press of a button my message instantaneously sent and read, spreading word quickly like wild fire. Leaps and bounds have been made in technology and communication today has made the world a far smaller place. From my end, I can't see who you are, but I can see all the different countries that are looking at this Website and reading my blog. It is heart-warming to know, whoever you are, can read what I have to say. In today's world, none of us are alone.

Public Speaking – October 4th 2011

I was invited to be a guest speaker by a charitable organisation: "Forgotten People's Fund" who raise money for families in need. It is a wonderful organisation, run solely by dedicated volunteers, ensuring that literally 99% of the proceeds raised actually go to the people in need. I think this is admirable, and I wish them much success in their continued work. I talked at their recent luncheon about "Living with chronic disease, whilst maintaining a happy and positive attitude"! I was concerned about getting my message across, which I hope I did. Having Parkinson's, I forget what I'm saying, or simply can't remember a word, so I took along prompt cards (valued advice, which I received from a seasoned public speaker). Life is short, so we might as well make the most of it, and being happy, laughing and smiling are all vital in making our days that much more enjoyable, especially when suffering chronic disease. So although I'm very tired now from yesterday's events, I still have a smile on my face, but I think today, I'll do nothing at all !!!

It's OK to laugh – October 6th 2011

I know that some of my poems are "raw", but then there's nothing pleasant about Parkinson's symptoms . Parkinson's is NOT merely shaking and tremors. The symptoms are so varied and much much more. It can be an aggressive and debilitating disease, and can strike anyone at any age. Despite battling Gaucher and Parkinson's disease, I still have a sense of humour and a positive attitude, which come through clearly in some of my poems. Someone who bought my book, asked me if it was inappropriate to laugh at the funny poems as they are about me suffering from Parkinson's. I replied, that we laugh all the time at home, when I do funny "Parky things", so if we can laugh, it's perfectly acceptable for others to see the funny side too. That's what it's all about. No matter how bad things get, I always keep my chin up and a smile on my face. This is the message I am trying to get across, so there will be greater awareness about Parkinson's, and despite suffering chronic disease, not only is it possible, but also vital to keep positive and cheerful.

Thank You Ladies – October 8th 2011

There are a number of wonderful women in my life, who's friendship I value and hold dearly. These ladies, each different and bearing strengths and wisdom of their own, bring support, warming my heart, making me smile from within. When surrounded by such amazing ladies, I feel immersed in something that isn't quite tangible, something so special, it's hard to actually put into words. Each woman, individually a jewel, but together they become a wealth of valued treasure. I am blessed to have you all in my life. You know to whom I speak, my cavalry who came to support me last week when giving a "talk", so that I would see some smiling familiar faces in the audience. Ladies, thank you for being there!

Smile – October 9th 2011

I was asked by someone yesterday if I answer all the e-mails I receive, to which I gave a resounding "YES"! Hundreds of e-mails have been flooding in since the book has been available and my Web site up and running, and I have answered every single e-mail individually. If someone has taken the time to write, expressing interest in making contact or simply touching base with me being in a similar situation, I feel most strongly in writing back personally to each and every one. This is the whole idea - that contact can be made, support given, just knowing you are not alone is a comfort. The Internet has given us all a great tool in being able to connect with people from all over the world in similar circumstances. Together, we can share experiences, learn useful tips or fresh ideas, and hopefully with a little humour, lighten what may have been a bad day. A lot of people from all over the world are going into my Web site and reading my Blog. You may not want to write anything, but I know you are reading what I have to say, and I know you are there. I hope you have a good day, where ever you are, and smile! I read in a ladies magazine yesterday, that if you're not wearing any make up, at least wear a smile as this is far more effective and beautiful than any make up! So don't forget to smile!

Canine Company – October 11th 2011

Being disabled I spend much time alone at home, so having a dog is a wonderful idea (that is if you like dogs!). We have a rather large, ugly, heavy set, drooling, smelly dog, who I utterly adore and wouldn't trade for all the tea in China. To tell the truth I'm not much of a tea drinker, and rather prefer coffee, but I digress........... we initially got our dog in order to guard the house, but she soon won her way into our hearts, and slowly has turned herself into an "assistance dog". She was never formally trained for this task, but somehow over a period of time as my health deteriorated, our dog's natural instincts picked up on the fact that I am to be 'handled with care'. When I'm in pain, she'll come and sit by my legs, resting her head on my knee, with huge doleful eyes looking up into my face as if to let me know she understands. When I'm having a particularly bad Parkinson's day and my balance is off making me unsteady, our dog follows me around constantly from room to room, and she won't leave my side, keeping a watchful eye on me. I have fallen several times, and on each occasion she's immediately come to me, stands perfectly still by my shoulders, allowing me to put my full weight on her as I pull myself up. So despite her loud snoring, the perpetual drooling, and that the house permeates with "odour cologne of dog", I can't imagine her not being a part of our lives. Once you have been smitten by a Dogue de Bordeaux, your life, not to mention your house, will never be the same again!

Good for the Soul – October 12th 2011

Treasuring the precious simple things in life should never be forgotten. Simply spending quality time with family or friends, whose company you enjoy, is something I highly recommend. Having friends over last night with whom we shared a festive dinner, was an evening spent in delightful company catching up on news, accompanied with good food, and most importantly much laughter, is good for the soul. Wishing you all a good day, and hope you spend it with those who warm your heart, uplift your spirits and make you smile.

Patience is a Virtue – October 13th 2011

Having Parkinson's disease can test one's spouse to the very edge of desperation, so fortunately for me, my husband has the patience of a saint. My memory not as it once was, I often repeat myself, and ask him the same question again and again. Sometimes I actually remember asking him the question, but don't remember what answer he gave. It must be beyond frustrating for him and he admirably lets it ride over his head, realising it's not me, but one of the cruel symptoms of Parkinson's. Did I mention that I often repeat myself?!!!!!!!!!!!! So to all you care givers out there, who like my husband find themselves in this irritating and sad situation - just know you are not alone!

Act Now – October 15th 2011

We never know what lies ahead, and the old saying "don't put off tomorrow what you can do today" comes to mind. If there is someone you've been meaning to call, something you've always wanted to do, somewhere you've dreamt of visiting, do it NOW. Life is awfully short, so grab it with both hands and with full gusto live to the full, embracing each new day as an opportunity to fulfil and further yourself. We all have "baggage" in life, but don't let this hold you back or tie you down. Put your "baggage" down, let it go, take a big deep breath and start to live your dreams. Today could be the beginning of a whole new chapter!

The Happy Gene – October 16th 2011

Many people have asked me how I keep so cheerful and positive whilst suffering chronic disease, so I will do my best to explain. When ill health strikes or tragic events occur, we often ask, "why?". Everything that happens to me whether it be good or bad, I tend to look at it as a lesson in life. If we let ourselves, we can gain strength, learn and grow from these experiences. One never realises the impact we have on other people's lives, by simple words of positive encouragement and support, which can change the course of someone's life. I have come to realise that life, although sometimes terribly short, has much to offer, and yet we often waste precious time on things that do not matter. Don't stress the small stuff! Many things have happened in my life, but not matter what is thrown my way, the human spirit is stronger than anything. So in answer to your question, and for use of a better word, my husband and I are fortunate to have "the happy gene". I realise that no such gene really exists, but this is as close to summing up the special 'factor' that makes us have a positive attitude, cheerful nature and the ability to see the glass half full.

No Translation – October 15th 2011

Someone asked me if I was going to have my book translated into other languages. I firmly and quickly said no, to which I received a surprising response, clearly indicating that the said person had not read my book nor understood what this whole project is about. I explained that rhyming poetry is not possible to translate, for once translated into another language, the flow and rhythm would be entirely lost, resulting in simply lines of words. The person hearing this then suggested a professional poet could rewrite what I had written! Horrified at the thought, I tried to explain that by giving my poems to someone else to completely re-write, so that my words, thoughts and feelings would no longer be mine, the poems would then come from a poet who is not ill or has any idea of what a person with chronic disease goes through each day! Why has my little book received such a huge response and caught so much attention? The simple reason being that it has been written by someone (me) who suffers from Gaucher and Parkinson, having opened up and written from personal experience which is straight from my heart. No one will be able to identify with a poet who is blessed with good health and writes about something he knows nothing about! Now having got that off my chest, I'm going to put the kettle on and make a cup of tea. Have a good day where ever you may be.

Nowhere to Sit! – October 18th 2011

I am baffled by the lack of seats in shopping malls in our area. There are plenty of cafes where one can sit and have a coffee or a bite to eat, but if one merely wants to rest for a few minutes without having to order something, there are no benches or seats to be found. Do the shopping malls not take into consideration disabled persons who may need to sit down occasionally? How about the elderly, or maybe pregnant ladies, or in fact anyone who has simply gone in and out of so many shops they might possibly want to sit a little before continuing their shopping spree. Surely shops want to encourage patrons to spend more time in their air conditioned premises hoping we'll empty our pockets and leave clutching bags full of merchandise. What I also find strange is a lack of seating in changing rooms. More than often there is no chair or bench inside a changing cubicle, and should I have the audacity to ask a member of staff for a chair, they look at me as if it has never occurred to them that anyone might need to sit down. Shopping for clothes was difficult enough before, but it is fast becoming an impossible feat. So if you own a clothing store and are reading this, check to see if you have a seat in your changing room!

Diversion – October 20th 2011

Having a good laugh is like a dose of magic medicine, and does wonders I've found. Getting together with family or friends and recounting funny stories, laughing so hard that one's sides ache can lift the weariest of spirits. One of the many things I love about my husband, is his ability to make me laugh. There is a lot to be said for occasionally acting a little silly and having a good laugh, in fact I highly recommend it. Being housebound most of the time does alter one's life, making things a little difficult. I have a few favourite old comedies I enjoy watching, and if having a particularly bad "Parky" day, and find I'm home alone, I'll absorb myself in one of these films and escape reality, even if for just a short time. Sometimes diversion can do the trick, even if just temporarily, it's a welcome break.

Clarity – October 23rd 2011

Have you ever had a moment of clarity where everything is crystal clear, as if suddenly coming into focus after seeing the world through a fog? Events in one's past, like pieces of a 'time puzzle' fall into place, and for a fleeting moment everything makes sense. No matter how tightly I hold on, I feel this clarity slip through my fingers, as water seeps out of a cupped hand, my clear view drains away. Born with Gaucher Disease, and now in addition suffering Parkinson's, doesn't present a cheery picture. Yet since my collection of poems have been made into a book, my life has become full of purpose, and turned around at incredible speed. I am filled with hope as I move forward on this journey of destiny. I may not know what my destination is, but I'll do my best to enjoy the ride.

Creative Debate – October 24th 2011

You may have read on the Internet, the debate that took place between several lawyers about whether artistic/creative talent, being enhanced by disease or medication is a question of authenticity. It is an interesting question, but I feel bares no relation to sports for an athletic achievement, which is performed once, is never repeated. The concept of ability enhancing cannot be applied equally to physical and conceptual as they belong to distinctly different aspects of our beings. I have to mention at this point, that since I was very young I have always written stories and poetry, and won second prize for writing a short poem when I was 17 years old. I have always had a creative mind, but recently due to insomnia (a common symptom of Parkinson's) with much time on my hands in the middle of the night, my writing has been prolific, so my ability/talent I have always had, and was most definitely there to start with. Someone who has no talent, cannot possibly wake up one morning and start writing something of consequence! This just doesn't happen. You are either creative, or not. I think sometimes in life, changes occur that simply make one write more, (or less like when you hear of authors having a "writer's block"). If anyone is put through life changing events such as living with chronic disease, it is bound to make one stop and think, and in my case, write down all my feelings and thoughts, dreams, and fears on paper. I am thrilled that I have sparked such an interesting debate, and the mere fact that this discussion took place, means I am getting my message out there and people around the world are paying attention, reading my poems and hopefully becoming more aware of Gaucher and Parkinson's, and what it means to live daily battling chronic disease. When you get people talking and discussing something - that has to be a good thing!

Detained by a Door – October 25th 2011

We went to a lovely restaurant one night, and during the evening, I excused myself to go to the bathroom. As I approached the "Ladies" a young woman held the door open for me as I entered. She was quick and nimble, in and out like a flash, leaving me struggling with button and zip, taking an awfully long time. After washing my hands, I went to open the door but found I could not. The door was so incredibly heavy, I was unable to pull it open. I stood there a moment wondering what to do. Should I use my mobile phone to call my husband who was sitting a few meters from where I was being held prisoner by an unruly hefty door that refused to budge? I felt utterly ridiculous so I decided to wait till another woman came in and hopefully would hold the door open for me so that I could escape. After a few minutes had gone by, and no one had appeared, I began to wonder how long I would have to be absent until someone at the table realised I was still in the bathroom. Finally, much to my relief, a woman flung the door open and relieved I stepped forward whilst she held the door back for me. For the life of me, I cannot fathom why they would make a bathroom door so very heavy, and I cannot think of a logical reason. I can understand the front door of premises requires to be heavy, but a bathroom door? This is not the first restaurant that I have come across this problem, and clearly whoever is designing bathroom doors in public places doesn't take into consideration, the elderly, disabled, pregnant ladies, or small children. There needs to be far greater awareness when it comes to customer comfort, whether it be putting a chair in the changing cubicle of a clothing shop, or making sure the door to the toilet doesn't weigh half a ton. Could this be the illusive answer as to why women often go to the bathroom in pairs?

Ginger Cake – October 26th 2011

Do dogs like ginger cake? The unequivocal answer to this is, "YES"! One afternoon I had spent much time and energy, not to mention ingredients, making a ginger cake. Taking it out of the oven (trying not to burn myself, having done so on three previous occasions), looking at the perfectly risen appetizing cake, my feelings of satisfaction were abruptly cut short. I promptly dropped the whole thing which broke into several pieces. I was too horrified for words, but our darling dog, who is under the illusion that one of her roles in life is to perform as a vacuum cleaner on four furry legs, came immediately to the rescue. The cake that had broken into many pieces and lay strewn around, was enthusiastically devoured at speed. Hence "Yes" dogs like ginger cake, especially freshly baked and still warm! Due to Parkinson's I drop things all the time, and have broken many drinking glasses at home, so we now have an odd assortment left and when having guests over, I can never find enough matching glasses to put on the table. So should you happen to invite me to dinner, please don't get out your best crystal !

Insomnia – October 28th 2011

Fatigue is one of the most common and debilitating symptoms of Parkinson's disease. It's very difficult to put into words the extent to which the sheer exhaustion just consumes and takes over one's body. To say that I am tired, or exhausted, or depleted simply doesn't do it justice, yet I cannot find a stronger word to describe the incapacity that totally engulfs me. Due to the constant insomnia, sleep deprivation takes its toll, and therefore I find myself taking cat naps (or 'power naps' being the new fashionable term!) in a comfortable armchair, instead of laying down in bed. This in no way makes up for the lack of a good night's sleep, but I guess it keeps me going. Last night I managed to get just two hours sleep, and trying not to disturb my husband, I lay there listening to music on my MP3 player for hours. Wouldn't it be great if all PD patients could somehow get together and have a party in the middle of the night when we are all awake and suffering from the frustrations of insomnia! We could have cocktails, shaken not stirred of course, dance the jitterbug or shake rattle and roll until the dawn. I wish you all a good weekend, and to any PD sufferers, a good night's sleep!

Tough Day, Rough Night – October 30th 2011

We all find comfort in different ways. I have a patchwork quilt, in a log cabin pattern made up of many brightly coloured fabrics. I spent most of last night sitting in an armchair in the lounge, accompanied by "insomnia" who has become my constant companion of late. Feeling quite alone in the middle of the night whilst the rest of my family slept peacefully in their beds, I was enveloped in my quilt, and as I ran my hands over the cheery cotton fabrics and touching the pretty patterned stitching that bound the quilted layers together, I somehow felt comforted. The fabric in the centre of each block representing the heart, and the border of the same fabric holding all together were given to me by a dear friend. Another lady dear to my heart taught me how to quilt giving me a great gift of expressing my creativity. And as the hours slowly passed by, and the night turned into morning, I was given strength by thinking of all the wonderful ladies who are part of my life. You have strength and courage, are bright and beautiful, each individual and special in your own way. You were not aware whilst fast asleep last night, that you were with me in spirit and brought me through a rough night. I know that many ladies throughout the world quilt, and with generosity of heart, make and donate quilts to those in hospitals or who are housebound. Let me assure you, speaking from personal experience, that your efforts are very much appreciated and these quilts are not just beautiful works of art, lovingly sewn and donated but also bring great comfort and joy. Well done ladies - keep quilting!

Getting a Kick Start – November 1st 2011

When walking, and I use the term very loosely, for it's more of a slow shuffle, I occasionally come to a grinding halt. It's as if someone has put on the brakes for me without asking my permission. The first time this happened, it was the strangest feeling, but it is now common place and part of my ever changing life. Normally my husband or daughter give me a little gentle kick behind the heel of my left foot and this forces me forward and I continue walking. It's a bit like giving a kick start to an old car! Someone told me recently that they use a verbal command which usually does the job. I have not heard of this before, but shall certainly give it a go. I think exchanging tips and good ideas is wonderful. Sometimes the smallest of things can make a difference. My PD meds are spaced at various intervals during the day and I was having terrible difficulty in remembering to take them a the right time. My daughter came up with a great solution, by putting an alarm on my mobile phone (which is always with me) reminding me to take my pills at the right time. If anyone has any helpful tips - do share them.

Heavy Machinery – November 2nd 2011

I always read carefully the little slip of paper that is inside any box of pills, and often wondered what the pharmaceutical companies actually mean when warning: "do not operate heavy machinery whilst taking this medication". If they are worried about me driving a tractor, operating a cement mixer or using a chain saw, they need worry no more, since we don't own any of these items! Would a washing machine fall into the category of "heavy machinery"?, as our machine weighs a ton. If yes, then I presume one can legitimately delegate the laundry to another member of the family. If this is the case, our dish-washer is also pretty heavy! What exactly is considered "heavy machinery" by the pharmaceutical companies?

Pretty Shoes – November 3rd 2011

What woman doesn't like pretty shoes? I have to admit, when walking past a shoe store, captivated, my eyes are quickly drawn to elegant high heeled, but totally impracticable shoes. Sadly, needless to say, I can no longer wear such stylish eye-catching footwear. I now buy sensible, comfortable sneakers for the winter, giving great support for my arches. In the warmer weather, I wear orthopaedic sandals, which are about as exciting as a left over cheese sandwich which has been sitting in the fridge for two days! All summer I was searching for a pretty pair of orthopaedic sandals, and was bitterly disappointed by the absurdly poor selection on offer. Just because a sandal is orthopaedic doesn't mean it has to look boring and something even your grandma wouldn't wear! Why can't the manufacturers make pretty, elegant, "I've got to have a pair of those" orthopaedic sandals?

The Rippling Effect – November 4th 2011

Nothing happens by chance or co-incidence. I was at a lovely function yesterday, and met a charming lady, with whom I had a wonderful conversation. I told her about writing the collection of Parkinson's poems and how this whole project has rapidly grown far larger than I would ever have dreamt. It turned out that she works for one of the large pharmaceutical companies who make one of the PD drugs that I take. Now you may think this was a random meeting, but I call it "fate"! Several weeks ago, I was invited to speak at a luncheon about "living with chronic disease whilst maintaining a positive and cheerful attitude", and during my talk, I mentioned how like throwing a stone into a pond, the rippling effect spreading outwards touches all those around. Yesterday, someone especially dear to me, said these very words to me, and yet she had not attended my talk, so had no idea I had said this very same thing to an entire audience. I don't know why I was destined to meet this lady from the pharmaceutical company yesterday - but maybe it's yet another ripple in the pond!

Enzyme Replacement Therapy – November 6th 2011

Having Gaucher disease, I receive enzyme replacement therapy in the form of infusions twice a month. Yesterday morning the smiling delightful nurse arrived, promptly as always, and I was hooked up to the i.v line. I have a stand on wheels, so am able to move around, but a little limited as too much movement alters the speed of the drip. Several months ago, whilst having my treatment, my next door neighbour, who has become a close friend over the years, knocked on the door and asked me in for coffee. I stood in the doorway with stand in tow, and she didn't bat an eyelid, so I followed her in, wheeling my stand alongside I had morning coffee at her house. The medication takes an hour and a half, but the time went by very quickly, having chatted nonstop discussing everything from baking, the new headmistress at the school, local elections, pros and cons of using real butter as opposed to margarine, and of course no worthwhile discussion would be complete without a short debate on world peace! We sipped coffee and munched on the freshly baked biscuits still warm from the oven, by which time my treatment was finished. Having a wonderful next door neighbour is a huge plus, but I had to laugh at the comic scene of going from our house to next door with my i.v and stand. I don't think there are too many places one could do this. Living in a small friendly village definitely has its plusses.

Great Tips – November 7th 2011

I spent yesterday morning at a cooking demonstration having a lovely time, enjoyable company, learning some new cooking tips, and then eating a delicious lunch. Two tips in particular caught my attention, from a Parkinson's point of view. Having poor dexterity in my fingers, peeling cloves of garlic is not only frustrating, but close to impossible. By smashing a whole bulb of garlic with a wooden mallet easily separated the cloves, which were then put into a stainless steel bowl, with an identical bowl place on top (creating a domed effect). By holding the two bowls in place and shaking vigorously (the shaking part is no problem!) after just a minute, the fine paper like skins had miraculously come off the individual cloves. The other amazing tip was something I had not seen but has possibly been on the market for a while. Silicone circular disks (they come in 3 different colours and sizes) which can not only be used as saucepan lids, but more interestingly to a PD sufferer, can be placed on top of a bowl and once pressed down, create an airtight seal - much like using cling wrap. I HATE cling wrap with a vengeance since having PD, and struggle and fight, often throwing it back in the drawer in pure frustration. So guess what I'll be on the lookout for when my daughter takes me out today!

I Consider Myself Lucky – November 8th 2011

Despite suffering two incurable chronic diseases, I consider myself very lucky. Many people go through an entire lifetime, not realising what blessings have been bestowed upon them, unable to see the wonders surrounding us all, or appreciate other people who affect us and are equally touched by our presence. To live a life with one's eyes shut and heart closed, is lonely and unfulfilling - a wasted journey in my mind. Having the ability to see the entire picture and fully embrace life with everything it has to offer, even when things go awry, is a much better route. Life has much to offer and should be grasped with both hands, open heart and seized each day. We do not know what lays in store, where our path in life is leading us, so making the most of this journey is imperative. Being open, honest and with strength of one's convictions speaking the truth. Complete acceptance, appreciating fully those who share your life, and loving unconditionally to one's full capacity; this is how I live my life. It may not be for everyone - but it works for me.

The Best Medicine – November 10th 2011

Never miss an opportunity to celebrate something. We had a wonderful evening with friends, who we feel we've known forever, and yet are relatively new in our lives. Having good friends sitting around the dining table, sharing a meal together, the laughter that filled our home last night, warmed our hearts and made us thankful our paths had met. I'm sure it happens to everyone, that occasionally you meet people with whom there is an immediate affinity; you just 'click'; almost as if you've always known each other. I was so busy laughing last night, I was barely conscious of the relentless pain and exhausted state that is unremitting. Clearly laughter is the best medicine!

No More Ice Cream Sundaes – November 12th 2011

Having Parkinson's my appetite is often very poor, and I can easily go without a meal here or there. Aware of how important a balanced nutritional diet is, I try not to skip meals and pay close attention when I feel I don't want to eat anything. I make sure I eat something, however little, just as long as it's food, but somewhere during the past few months, I must have unconsciously given myself permission to eat ice cream sundaes when nothing else appears appetizing to me. Having no large mirror in our house, when visiting friends yesterday, I was horrified to catch a glimpse of myself in their full length mirror! I suddenly realised that I may not be eating that much, but the ice-cream sundaes were certainly making their existence known. So today is a new day, and no more sundaes for me! Finding the right balance is obviously harder said than done.

The Ministry of Funny Walks – November 13th 2011

If you are a fan of Monty Python, you may remember the sketch about "The Ministry of Funny Walks". On occasion my walking gets so bad, that I keep my family well amused with my own personal rendition of "funny walks"! Finding the ability to laugh at myself and circumstances that are beyond my control, I believe is a considerable asset in keeping my spirits up and of those around me. I am a constant source of amusement and entertainment to family and close friends, who I hasten to add, laugh with me and not at me! I have become the master of shaking cocktails in our house, and the salad dressing jar too! Even holding a cake that had just been iced, my tremors shook the cake just enough to smooth out the wet icing leaving it smooth and glass like. If you look hard enough, you'll always find something good in any situation, just turn it around and look from a different angle.

Spontaneity - November 15th 2011

It was a rainy, chilly night, and at the last minute without prior planning, I happened to be in the neighbourhood of my cousins, so I dropped in spontaneously for a visit. Just as I got out of the car, the heavens opened and the rain came down in a deluge. At my slow shuffling speed, from the car until the front door of their house, was enough time to get soaked through, but it was well worth it. Sitting next to their fire drying off my clothes, hands cupped around a steaming cup of tea, I thoroughly enjoyed a couple of hours companionably chatting. We are never short of conversation. My mother always said that being a "chatter box" was genetic and that it runs in the family. I guess she was right. It was a lovely evening, and proving that spontaneity can often be most rewarding. I guess what I'm trying to say; don't let any opportunity pass you by, make the most of every moment spending time with those you care about.

Growing Old Gracefully – November 16th 2011

Discussing colouring hair with a friend, I began to realise that I am in the minority, as most of the women I know, are not sporting their natural colour. I was asked when I would start to colour my hair, as some very persistent grey hairs are appearing and threatening to take over! Without hesitation I said "I had no intention of ever colouring my hair". My friend was horrified, until I began to explain my theory. I feel my hair colouring matches my face, which thanks to mother nature, is also showing signs of aging. I am no longer 21 with dark brown hair and a smooth unwrinkled young face. I am now 48 and think the lines by my eyes reveal I have laughed a lot; my grey hairs I rather like, I've worked jolly hard to get them, and they simply show that I have a story to tell. I saw a lady the other day, with long grey hair tied neatly back in a bun. She was so poised and elegantly dressed, I almost stopped her to let her know how great she looked. I think growing old gracefully, finding the right balance whilst retaining style is to be applauded.

Gaucher Conference – November 17th 2011

I attended the yearly Gaucher Conference last night, and it was great seeing so many familiar faces; other patients I've come to know over the years and share much in common, the marvellous team of doctors and nurses who take care of us all, and representatives from the various pharmaceutical companies who provide the very necessary drugs to keep Gaucher Disease under control. Although this conference is held only once a year, it is a great opportunity to get together, and speaking for myself, simply being with everyone is supportive and comforting, knowing many of these people for over 20 years, they are almost like extended family. Thank you to all those who helped organise last night, which was a most successful and enjoyable evening.

Learning from Experience - November 20th 2011

I once stayed at a hotel attached to a hospital, and upon making the reservation, I informed them I was disabled. I asked if no ground floor rooms were available, was there a lift? as I have difficulty in walking and use a crutch. They assured me they had a lift and a suitable room had been earmarked for our stay. Upon arriving, we found there was a large lift taking us up to the 2nd floor to our room. However, one look at the bathroom, it was clear that the lady who had taken our reservation did not fully understand the meaning of a "disabled friendly" room. There was no shower cubical, only a slippery porcelain bath tub (with no rubber bathmat) which was so high, I could not lift my leg over to get in. The shower was fixed to the wall at one end of the bath, but there were no bars to hold on to, just a flimsy shower curtain that surrounded the bath. Not only was this bath/shower dangerous but highly unsuitable for a disabled person. I learnt one has to be very specific when booking a hotel room, even if you think you've made yourself clear, the reservation clerk might have no idea what being "disabled" really involves. One learns from experience!

Travelling Abroad - November 21st 2011

Traveling abroad is not easy when disabled and before even embarking on a journey, I know what lays in store from previous experience. The last time I flew, was several months after hip surgery; not the best time to make a journey, but sometimes family affairs dictate. Flying economy, there is little space for a healthy nimble person to get in and out of an airline seat, but for someone after hip surgery the difficulties were extreme. Just getting into my seat, required moving and positioning my body in the most detrimental and painful position. The worst part was once all the passengers had settled down, eaten, lights dimmed, and reclined their seats to take a nap. I'm sure everyone has experienced this scenario at one time or another when flying. The person in front of me reclined his chair, subsequently he was virtually laying in my lap, rendering me incapable of moving. Even a contortionist would have to make some pretty impressive moves to extricate oneself from such a confined position. Hence I try to restrict my flying to a minimum. Isn't that why cruising was invented?

Always Be Prepared – November 22nd 2011

Going on holiday I've found planning ahead military style is highly advisable. I always make sure I have enough medications to see me through the days we'll be away, and a little extra to cover any unforeseen delays returning home. I never put my medications in the suitcase just in case luggage goes astray, so always keep a bag containing all pills in my hand luggage. A laminated card stating what medical conditions I suffer from along with details of any medications that I am allergic to, is always tucked inside the bag with the pills. I was a Girl Guide in my youth, so I guess their motto "always be prepared" has stuck with me!

Scales that Lie – November 23rd 2011

How to discover if your bathroom scales are accurate: get three members of your family to weigh themselves, and should you all be exactly the same weight......well there you have it! Unaware that our scales were incorrect, I was blissfully under the illusion that I was at the correct weight. I should have suspected something when our washing machine decided to shrink only my clothes! So I think it's time to replace our scales and get new ones that tell the truth, however harsh!

A Complimentary Mistake – November 24th 2011

I entered a ladies clothing shop some while ago, and before I had the chance to peruse at all, the sales lady was standing before me, as if she had a nasty smell under her nose, looking me up and down and in quite a matter of fact way said, "there's nothing for you here". I was lost for words (which doesn't happen often), feeling insulted and somewhat like the character in "Pretty Woman", I abruptly turned around and with as much dignity as I could muster, hastily left the shop. It was only later as I retold this story to a girlfriend, that I felt a whole lot better. The shop I had unknowingly entered, was in fact for larger sized ladies, so what I had deemed as an insulting shop assistant, was in fact a compliment, as she merely meant "we don't stock anything small enough to fit you"!

Positive Parkinson's Site - November 25th 2011

I was contacted by someone who has created the most amazing Web site for Parkinson's. This is no ordinary site! It is simply inspiring, and I highly recommend taking a look. The sight is like no other I have seen. One can browse the Internet and find all sorts of very useful and helpful information about medications, clinical trials, diagnosis, symptoms and what to expect, but nowhere have I found a site that is aimed solely at keeping one's spirits up. The site's goal is the same message that I am determined to get across through my poems, public speaking and to anyone who will listen. It's so nice to know there are others out there with the "happy gene"! Take a look at this uplifting "Positive Parkinson's" Website www.positiveparkinsons.com or send it to someone you know needs a lift.

No More Snail Mail - November 27th 2011

I am constantly amazed at how the Internet today has made the world such a small place. Contact can be made between strangers, who would never have had the opportunity of establishing communication without today's technology. From the comfort of one's home, you literally have the world at your fingertips. However, I do miss the old fashioned hand written letter. Buying pretty stationary is a thing of the past, and I cringe when I see people using abbreviations for texting phone messages which has become a language all of its own. I guess I'm an old fashioned girl at heart!

Out of the Mouths of Babes – November 28th 2011

Waiting in the pharmacy, a woman and her young son were standing in front of me being served. The little boy who was no more than 6 or 7 years old stared at me fixedly. Eventually edging a little closer, he said to me "my grandpa walks funny like you, and he has a stick like yours." I smiled broadly hearing such honestly spoken words. Upon seeing me smile, the little boy continued, "my grandpa can take his teeth out, can you?" At this, I burst out laughing and shaking my head vigorously, I replied "no." The boy's mother also amused by her son's observations, smiled apologetically at me but before she could divert his attention elsewhere, he asked yet another question, "my grandpa's hands shake cause he's got the Pinkinsuns, have you got Pinkinsuns?" I was smiling from ear to ear at his highly amusing conversation, and told him I did indeed have Pinkinsuns! As the embarrassed woman dragged her son out of the pharmacy, he shouted over his shoulder one last comment "my grandpa says my smile can light up a room." Still grinning, I looked around the pharmacy at the other people waiting. Everyone had been listening to our conversation and there was a smile on every face. Grandpa was right; his grandson's smile could light up a room!

A Welcome Break – November 29th 2011

Yesterday my daughter took me to a shopping mall for a few hours, and the outing was a delight, looking at the vast never ending array of shops displaying their colourful wares. My daughter got quite a "work out", as pushing even the lightest person in a wheelchair, is still hard work. For me to get out of the house and see some life, was a very welcome break. I would never have managed to go around all the shops and enjoy the morning pain free, without the aid of my wheel chair. Walking short distances I can manage, but a mammoth shopping expedition proves far too much for me. We ended up not buying the illusive handbag I am in search of, but this was of little importance as it was a thoroughly enjoyable morning, and for me there is nothing more precious than spending time with my daughter.

Car Parking Fees – November 30th 2011

Being charged for the car park in hospital just doesn't sit well with me. I find this almost callous and heartless. I hardly think someone goes to a hospital for amusement or with the intention of having a good time! One is there for a jolly good reason, and would probably much rather be somewhere else entirely. People who are hospitalized for long periods of time, or have frequent tests/check-ups, the cost incurred to the family on top of everything else they must be going through, just isn't right. Are hospitals so insensitive and pitiless by adding insult to injury, anyone having the misfortune to need regular hospital visits, also then have to pay for parking? I realise funding and budgets probably dictate relying on this steady income, but I do wish the hospitals would re-think this policy.

One Size Fits All – December 1st 2011

Something that has always puzzled me in clothing shops is the "one size fits all". How on earth did this phrase come about? What possessed the manufacturers to invent this impossible not to mention ridiculous expression? If you take a quick look along any busy street, I think one can safely say, that people generally come in all shapes and sizes, and different heights. I would very much like to find a "one size fits all" T-shirt that fits me (I'm all of 5'2") that also fits my friend (who is 5'9"). One size fits all? I don't think so!

New Book – December 2nd 2011

If you think I have been sitting back on my laurels, you are highly mistaken. Making the most out of every moment, I have made full use of the insomnia that Parkinson's has so generously given me, turning me into a prolific writer at all hours of the night or day. When you are still soundly asleep in your bed, I am sitting in the kitchen, writing like a there's no tomorrow. I have just completed a mystery/adventure story, which is now available on Kindle through Amazon. The title is: "Slipping Through Time". I hope you'll take a look at my book, the cover, dedication and first couple of chapters of which can be viewed free on Amazon. And now as the night has slipped through into morning, it truly is time to take a well-deserved break and make a pot of tea. So I will bid you farewell till tomorrow!

Finding Solutions – December 5th 2011

Finding it difficult to swallow at times, whether it be food or my own saliva is one of the many unpleasant but common symptoms of Parkinson's. I have found that I want to eat things I wouldn't have normally eaten. I used to hate yoghurt, but now have it every morning for breakfast, and never used to eat ice cream, but now can't get enough of it. I guess the cool cold consistency that just slides down easily, makes these foods that I once shunned, much more appetising. A good tip: when having difficulty swallowing, try sucking a boiled sweet (hard candy) which I find helps considerably. I now keep a tin of boiled sweets at home and in the car.

Physiotherapy – December 6th 2011

Despite being in pain and feeling very unwell at times, keeping active is vitally important. It is sometimes a fine line between doing enough exercise to keep ones muscles and range of movement, and yet not overdoing things, causing pain or damage. Having Gaucher and Parkinson's proves very difficult in getting the correct balance of exercise just right. I am fortunate to have a wonderful team of physiotherapists at our local health centre, who have been excellent. After learning a whole regime of exercises, I am able to continue doing these at home, which I conscientiously do twice a day.

Ordering in a Restaurant – December 7th 2011

When I was young, single, foot loose and fancy free, if out on a date I remember ordering carefully in a restaurant, so that I would remain poised and not have to struggle with something on my plate. Spaghetti being a dish I would avoid like the plague, for there is nothing less appealing than having ragout sauce on your chin. The same went for anything containing finely chopped spinach or tiny poppy seeds that would get stuck in-between my teeth; a most unattractive look! Now all these years later, I find myself once again ordering very carefully in a restaurant but for very different reasons: Parkinson's! Any meat on a bone or fish that requires careful and precise dissection, or peas that roll off your fork, are immediately dismissed when looking at a menu. Spaghetti is still off my list, but ravioli or gnocchi are easy and I can maintain my dignity at the table. At a function recently, sitting next to my husband, we were served steak with all the trimmings. My husband being in tune with my thoughts immediately cut his steak up into bite size pieces and then without a word or any fuss, we simply swopped plates. Voila, problem solved!

Smiling at Someone – December 8th 2011

I find that nine times out of ten, if you smile at someone, they'll smile back at you. If you come half way towards a person, they'll come the rest of the way to you. Staying open minded and willing to embrace life, makes each day much more interesting. I always say hello to everyone, whether it be a neighbour, the street cleaner, the doorman of a building, it doesn't matter who the person is, the mere fact of acknowledging someone, can make a difference. The other day at the end of our street, I saw a lady I know walking towards me, so I started to smile and wave. As I got closer, I could see she was not waving back, and her expression was rather puzzled. When we got up close, I realised I was wrong, and didn't know her at all. Apologising, saying I had mistaken her for someone else, she continued to stare at me, telling me I looked familiar. She then asked what my mother's name was. When I told her, she began to smile, for she knew my mother and could recognise the strong family resemblance. So although I'd been mistaken, if I had not smiled and waved at this lady, we would probably have walked straight past each other and missed an opportunity of meeting someone new and having a nice chat.

Smashing Time – December 9th 2011

Talking with a fellow PD sufferer yesterday, we discussed how many glasses and other objects we have both broken at home. I mentioned I had written about dropping drinking glasses in one of my recent Blog entries, and clearly tempting fate a little too far, or call it "Murphy's Law", whilst talking about this very subject, I promptly dropped and broke yet another glass whilst on the phone! Talk about perfect timing! Although we are now short one more glass in our diminishing odd collection, I had a smashing conversation and it was very nice catching up on news. Have a good weekend everyone and enjoy spending time with those you love.

Being at a Disadvantage – December 11th 2011

Sometimes being so upbeat and positive by nature can put me at a clear disadvantage. My cheery voice, smiling face and ability to eloquently express myself in writing, makes it very hard for others to understand how ill I really am. Fortunately the doctors who take care of me now realise my unfamiliar disposition, whether it be from a British upbringing/ culture or that I simply possess the illusive "happy gene". Although I may occasionally baffle others, having the uncanny capability of remaining joyful no matter what life throws my way, is a definite plus!

Tea Time – December 12th 2011

There is a lot to be said for the rather dated, but much loved British custom of afternoon tea at 4 o'clock. It's a comforting ritual that no matter where one lives in the world, this outdated tradition lives on. Seeing the table laid with china plates and teacups, a steaming pot of tea, accompanied by freshly baked scones, butter, homemade jam and deliciously rich clotted cream, nostalgically takes me back to childhood. Give me an English cream tea anytime!

Being Honest – December 13th 2011

Most days I manage the pain and discomfort of Gaucher and Parkinson's, but yesterday afternoon got a bit much even for me. Normally the cheeriest and stoic of patients, I had took to my bed, and laying there tucked warmly in my quilt, I felt little respite from the constant bone and muscle pain. Gaucher and Parkinson's normally take it in turns to drive me to distraction, but yesterday they decided in unison with full force to make their vile presence known. Anyone suffering chronic disease has good and bad days, but today is a new day, and I hope a better one.

Medications Galore! – December 13th 2011

Getting the right medication for any Parkinson's patient, is a matter of trial and error. One has to be very patient whilst trying different tablets, varying dosage, and even attempting different intervals between medication, plus decisions as to take pills before or after meals. The possibilities are endless, but thank goodness today there are many good Parkinson's medications on the market, so at least if one isn't suitable, there's always something else to try. I still wait in hope of a cure, like so many other millions of Parkinson's sufferers around the world. Sorry to sound a little impatient but if you're out there working on a cure, please do hurry!

Doing All You Can – December 14th 2011

If you have Parkinson's, regular checkups and taking suitable medications are a good foundation, but there are many other things you can do to improve or at least help your situation. Many people attend dance and movement classes tailor made especially for Parkinson's, which can be highly beneficial. Physiotherapy, whether done at your local health center, or in the comfort of your own home, helps with mobility, range of motion and stability. A well balanced healthy diet, without doubt also plays an important role. For me the most important component is one's attitude and mood. I think remaining cheerful is paramount and staying positive no matter what, is number one on my list. Apart from physical health, mental health is of equal importance, and keeping busy, optomistic, staying social, laughing and accepting changes whislt making the most out of your life is what I preach. I wish the "happy gene" I have been blessed with, were contagious, I would infect everyone I come into contact with!

Larger Print – December 16th 2011

I visited a very dear lady today who lives in a Retirement Village, and I'm not quite sure who enjoys the weekly visits more, myself or the lady! We are never short of conversation, she is always good company with interesting stories to tell, and we have a good laugh together. However today she made me realise for the first time, that often it's difficult for those with poor eyesight to read small print, and I immediately asked if she'd had a problem reading my book of Parkinson's poems. I appreciated her honest answer, which was "yes", and so the next re-print of the book, I will endeavour to see if the print can be enlarged.

Pretty Perfect for Parkinson's – December 18th 2011

I find, as I'm sure any woman with Parkinson's will agree, that puttting on a necklace or bracelet with tiny clasps is tedious, frustrating and a near impossible feat. Having to constantly rely on others to help with the smallest of tasks, when coming across something that can be of help, no matter how small, I wanted to share it with you. I found recently a necklace that can also be worn as a bracelt by wrapping it several times around one's wrist, made of beads intersperced with little attractive magnets. No clasps required, no fiddling, the string of pretty colours just attaches by itself, making it easy to put on and wonderfully easy to remove. This magnetic jewellery comes in several different colours, and immediately I could see its versitility - particularly relevant when having little dexterity in ones fingers.

Time is of the Essence – December 19th 2011

In the infinite vastness of time, we are here on earth for a mere fleeting moment, hence we should make each moment count. Like a footprint in the sands of time, one generation after another slips away, yet we can all leave a significant mark behind. Making a difference to society, having something of value to contribute, our actions and words can indeed make a difference, continuing on in others and consequently become everlasting. Time is of the essence, so make the most of your life.

My 11:30 a.m. Buddy – December 20th 2011

Sitting in a café with a fellow Parkinson's sufferer, the scene must have appeared somewhat comic to onlookers who probably didn't understand why the two of us could not sit still, as we continuously wriggled and moved in our seats. My daughter put an alarm on my mobile phone reminding me to take my pills, and whilst chatting with this lady, my alarm started to chime. I excused myself whilst turning the alarm off and took my 11:30 a.m. pill. A few seconds later, the lady's alarm began to ring on her mobile phone, for the very same reason. We had to laugh at the irony of two women meeting for the first time, and finding that we share much in common due to Parkinson's, including medications and even down to the time of day they should be taken, which have been helpfully programmed by family into our mobile phone's alarm. So I now have an 11:30 a.m. buddy!

Swings and Roundabouts – December 21st 2011

Getting the medications right for any Parkinson's patient is a long journey requiring much patience, and trial and error, until the suitable pills along with dosage can be found. Obtaining the right balance to ultimately improve the on-going symptoms, which can be so debilitating and humiliating, is no easy task. There are benefits and side effects to most medications, and it's a matter of swings and roundabouts whether it's better to put up with certain unpleasant side effects in return for the desired gain. Having just added another to my ever growing cocktail of pills I take each day, I find I'm in a dilemma, for the shaking has reduced considerably, yet my body feels incredibly stiff and painful. So to take the pills or not, that is the question, whether tis nobler to bear the slings and arrows of misfortune and put up with the side effects, only time will tell.

Listen to Your Body – December 22nd 2011

Always pay attention and listen to your own body. You can often be the best advocate, for you know yourself better than anyone so if something feels wrong, seek medical advice. Many people ignore signs or symptoms, waiting too long wasting valuable time and possibly costing you effective options. I have always spoken candidly to doctors, for I believe divulging the full picture, gives necessary tools with which to make a correct diagnosis. I am very fortunate to be in the care of some of the most highly regarded specialists in the country, and for this I am forever grateful.

The weekend – December 23rd 2011

As the weekend approaches, you can almost feel the country heave a sigh of relief. Offices close, busy high streets are emptied, banks and institutions shut their doors, and the fast pace of the business week is put on hold temporarily. Opportunity to spend quality time with family and friends, plans and arrangements made in advance, awaited with expectations, fall into place. The weekend gives us a chance to reflect over recent events, taking a break from normal daily routines and activities. Whether one simply relaxes and has 'time out', or fills the weekend with enjoyable socializing or hobbies, hopefully our physical and emotional 'batteries' are recharged to face the coming week. Have a good weekend everyone – and enjoy life.

Cheeky driver – December 26th 2011

There are some bad drivers around, who seem to think that they own the road and woe betides the person who gets in their way. Some months ago, a man cut me up, forcing me to make an emergency stop. Sitting there stunned, looking at him over the top of the driving wheel, I should imagine the expression on my face said it all, and if steam could have come out of my ears, it surely would have. Knowing full well he was clearly in the wrong, and realising he had almost caused an accident, not only did he have the nerve to smile at me, but had the audacity to blow me a kiss as he drove off! When someone acts unexpectedly like this, what are you supposed to do? I guess I have to be thankful that he didn't shout or swear at me whilst making rude gestures!

Still writing – December 27th 2011

Many people ask me if I am still writing at all hours of the day and night, and the answer is a resounding "yes"! Whilst most of you are sleeping soundly in your beds, some Parkinson's patients idle away the night hours as insomnia dictates. During those hours that sleep eludes me, the house is tranquil and quiet, a perfect atmosphere to immerse myself in writing. I am sure that each Parkinson's patient finds something to while away those frustrating hours, when one would much rather be snuggled under the bed covers peacefully drifting off into the land of dreams. So now it is light, yet another night has passed, the phone begins to ring and the familiar sounds of traffic, people walking by on the street, and the array of noise and distractions that accompany a regular day return. I wish you all a very good day, and as always, good health!

Pretty pink present – December 28th 2011

I have been using my husband's computer to do all my writing until now, but was presented with a laptop of my own yesterday. The keys on the keyboard are easy for me to use and having tried several other types this is definitely a "Parkinson's friendly" keyboard. If you are considering purchasing a new computer or laptop, do make sure you try out the keyboard sufficiently to ensure that you can use it. I tried many that looked very nice, but the keys were too closely spaced together and it's not just the spacing, but the touch and feel of the keys which are equally important. So at the ripe old age of 48, I have for the first time my own computer which I have to tell you is great, and much to my delight is a pretty shade of pink!

Not easy – December 29th 2011

Taking care of someone with Parkinson's disease is far from easy. The shock and realisation that life will never be the same again is a hard pill to swallow. Plans and dreams for the future are suddenly shelved and life as it once was, changes drastically touching every facet of daily routine and ability to be self-sufficient. Sadness, anger and guilt take front seat, and many deep emotions come aboard for the Parkinson journey. Sometimes simply too painful to talk about openly and honestly, feelings are kept hidden, but like a festering sore, things won't improve if not dealt with. Candid discussion and frank communication is the key.

Harsh question – December 30th 2011

I was asked a rather harsh question yesterday which at the time felt extremely cruel, yet later upon reflection, I thought this valid subject needed addressing. I was asked "Do I felt guilty that my husband and family have the painful task of taking care of me now I have Parkinson's?" My answer is this: Of course YES! But (there's always a 'but' as nasty as this little word is!) no one knows what tragedies or ill health await us, and it's probably better this way, for if we knew what lay in store, it would without doubt be too much knowledge to cope with. When marrying, as the famous line we've all heard a thousand times comes to mind, 'for better or for worse', you fall in love, marry, start your new life together with hopes and dreams for the future, but none of us know for sure what lays ahead. Some lucky couples are blessed with good health, and some like me are unfortunately afflicted by ill health. But with any affliction, something good always accompanies it, you just need to have ability to see past the initial shocking realisation to comprehend that this may not be what you expected, but it's not the end of the world. I would be in denial and lying to you if I were to say that I didn't wish I was healthy and strong, and that my life hasn't changed drastically over the last few years ultimately changing that of my husband and family. However, love that is true and steadfast will stay put like superglue, despite all the difficulties we are put through, and are held very much together by this invisible bond. So yes, I admit there are times I feel guilty at what my husband is missing out on, and the things he has to now do for me, but it is counterproductive to ponder too long on these negative thoughts. This is what life has dealt me, so we make the most of it. A marriage certificate has no 'good health clause' in it; there is no guarantee or sale and return. You marry someone because you love them with all your heart, and together accept whatever the future will hold. On the positive side, it has given us the wonderful opportunity to help others, and this is priceless.

Two sides of a coin – January 1st 2012

There are two sides of a coin, two sides to an argument, and with a game of poker there are 'two pair'. With Parkinson's I think the same applies, for there are two persons suffering: one with PD and one caregiver. Both feel frustration and anger in receiving something they didn't ask for, don't deserve and most definitely not in a million years would have expected. Life changing situations, whatever the disease can either make or break you. It can tear you apart or bring you closer together. Accepting and coming to terms with an incurable degenerative disease is not easy for the patient or the caregiver, but if the lines of communication and honesty remain open between the two parties, acceptance of lifestyle changes can be embraced not shunned, family and friends are informed keeping them up to date, making the heavy burden lighter to bear. I wish you all a happy New Year, and may 2012 bring about a cure for Parkinson's disease that so many of us are waiting for.

Stigma – January 1st 2012

Although times have changed considerably, medicine and technology having taken huge leaps forward; there still remains a stigma when it comes to diseases that affect the brain. Most of us have a loved one, maybe a parent, partner or someone in the family suffering from Alzheimer's or Dementia. Both of these diseases are wickedly cruel, the person we once knew and loved so well slowly vanish before our eyes, leaving but an empty shell behind. Parkinson's affecting the brain, in its later stages sadly a form of dementia sets in. Why is it perfectly acceptable to talk about diabetes, asthma, blocked arteries, or slipped disks? But mention any disease associated with the brain, and the long attached stigma rears up its ugly head. With the fountain of information one has easy access to, many programmes on television, articles in newspapers and magazines, no stigma in today's society should remain when talking about mental health. When I was a child, anyone with Cancer would use the "big C word" instead of saying the word "Cancer", almost like in the Harry Potter stories of not mentioning "You know whose name", afraid of saying the name "Voldemort" out loud. Calling a spade a spade and using the proper name out loud enforces courage to face a battle giving us the determination to win. Today thankfully diagnosis, treatments and surgery are vastly improved, and understanding and talking about Cancer have come an awfully long way over the years. Let's hope that the stigma attached to mental disease will become a thing of the past. Education is power - so let's get educated!

Physiotherapy with music – January 3rd 2012

I was asked if listening to music whilst doing physiotherapy exercises would be helpful? Absolutely "YES"! I think that music is highly beneficial and listening to favourite songs not only boosts morale lifting one's spirit, but makes a daily regime of monotonous exercises a little less boring, and I find the time passes quickly. Music is definitely a great tool, so listen to whatever makes you happy and feel good. When I am writing however, I prefer peace and quiet, and at 02:00 this morning as Parkinson's wouldn't allow me to lie in bed any longer, I got up and was writing in the silence of our kitchen for an hour or two. Have a good day everyone, and put on some good music!

Comfortable car – January 4th 2012

Many cars are fairly low and take a bit of manoeuvring on my part to get in and out without causing pain to my hips. I took a taxi some time ago, and usually they are regular cars, but this particular one was higher (like a small SUV), making it so easy and comfortable for a person with disabilities, I complimented the driver on his choice of vehicle. He told me that when he picks up passengers from a nearby retirement home, the passengers there are delighted with his taxi as they find it far easier to get in and out of than a regular car. His taxi is now a bit hit with the home's residents, and I can certainly understand why. I was taken out yesterday in a car that was considerably higher than our car, and again I found it a pleasure, so easy getting into the passenger seat and getting out of the car was a synch. If you are about to get a new car, take the height into consideration, as it really does make a difference.

Keeping up appearances – January 5th 2012

Speaking to friend who is in the fashion business, she gave me some invaluable insights and much food for thought. Having difficulty with zips and buttons makes any Parkinson's patient opt for the ever faithful tracksuit. Easy to slip on and off, and undoubtedly comfortable, yet I think we'd all agree, lacking in style or elegance, its shapeless form held up by an elastic waistband leaves much to be desired. If you really have no choice other than to wear a tracksuit at home, then at least splurge and buy yourself a super glamorous one. It's easy to fall into bad habits when disabled and spending much time at home, dressing poorly, unkempt hair, not bothering with makeup, and manicures and pedicures all become a thing of the past. Just because one is chronically ill, there is no excuse to look shabby! In fact, it becomes super important to make an effort to look good. It can boost your morale, and certainly keeping up appearances will help preserve 'you' in the eyes of your family and friends, even if merely a façade.

Light bulb moment – January 8th 2012

Have you ever had a "light bulb moment" when someone tells you something quite simple, yet it turns out to be very valuable advice? An eye opening revelation, which made me think long and hard about a topic that is often overlooked, or maybe thought frivolous or trivial. Looking as good as one can, in fact plays quite an important role in one's wellbeing, whether chronically ill or perfectly healthy. I wrote in my last blog entry about how important it is to "keep up appearances", and realise that I am guilty as charged! Taking a good long look at myself realising my tracksuit has seen better days will now be binned, and I'm on a mission to find a new glamorous one, which I'll be able to wear at home.

Specialised equipment – January 9th 2012

Going to a shop which sells specialised equipment for disabled persons, I was intrigued by some of the ingenious ideas and inventions. The array of gadgets was endless to help one in the kitchen, dressing, picking things up from the floor, showering; there was even something to assist putting on socks and shoes! The variety of very useful and helpful tools was vast, but the prices were equally amazing! Amazingly high! Although clearly a lot of thought and research had gone into many of the items, I felt that some of the things could be bought elsewhere for far less. This evening in a regular kitchen shop, we found a cutting board made of plastic, with a rubber edging so that the board doesn't move on the working surface. It also had a ridge around it and is at an angle preventing things from rolling away. Obviously certain equipment can be purchased only at a 'specialist shop', but other items can be bought elsewhere or even with a little creativity and thinking out of the box, something you already have at home can be converted and used.

Useful tip – January 10th 2012

When reading a magazine, I find it difficult to turn the thin pages, but using a 'post-it' I stick one at the top of the page, so that it's half on and half sticking up, and when I want to turn to the next page, I simply grab a hold of the 'post-it' and use it to turn the page. Then I remove the 'post-it' and put it on the next page ready to turn the following page. It may sound something small, but it's very helpful and saves getting frustrated. The 'post-it' also serves as a great book mark that doesn't slip and fall out of the magazine or book. I think with a little ingenuity and lateral thinking; one can come up with all sorts of solutions. If anyone has any useful tips to share, I'd love to hear from you.

Mission accomplished – January 11th 2012

My husband took me out shopping and after a bit of searching we finally found a fabulous updated version of the 'tracksuit'. Not only is it comfortable and warm, but a beautiful shade of blue. The cut and fit, unlike those shapeless garments made years ago, where one would resemble a mini Michelin man, this modern take on the tracksuit is highly flattering resulting in me feeling good and looking very respectable. So mission accomplished – I've found my glamorous tracksuit! If this topic makes no sense whatsoever, and you think I may have lost my mind, I can assure you I have not. Please take a look back to a blog entry I made a few days ago: "Keeping up appearances" which will explain today's entry!

Sharing good advice – January 13th 2012

I spent a few very pleasurable hours today with a lovely lady who is so modest, I don't think she realises just how amazing she is. Armed with notepad and pen I scribbled down the valuable and very sound advice she gave me regarding fashion tips, footwear, makeup, jewellery and so on. She has worked in the fashion business for some years and has much experience with ladies of all shapes and sizes, including disabled and those with special needs or requirements. I found that she writes a blog, and wanted to share her wonderful advice with you all. One is never too old to learn something new, so do take a look at confidencetricks.susiefaux.com

I'm kind of tied up this morning! – January 15th 2012

Once every two weeks I find myself attached to an intravenous line at home for 1 ½ hours, receiving the Enzyme Replacement Therapy for Gaucher Disease, which keeps my condition more or less in check. I wish the same could be said for the cocktail of pills I take for Parkinson's, as this is somewhat like a roller coaster ride never knowing in advance how I'll feel or what the day will bring. Unrelenting and unpredictable and two words that encapsulate Parkinson's Disease very well. The nurse will be arriving here shortly, so I will have to leave you for now, but wish everyone a good day, stay warm and dry – it's a good day for a bowl of delicious hot soup!

Take a silent moment with me – January 17th 2012

I received sad news yesterday, that a friend's mother passed away having fought Parkinson's disease for several years. My deepest sympathies go out to my friend and her family who I'm sure are receiving the much needed support and comfort from family and friends surrounding them at this time. I ask you to join me in a silent moment, where ever you are, and although you may not know this lady, take a minute to reflect, for she was someone's wife, mother, grandmother, friend and neighbour, a fellow Parkinson's sufferer – and she will be sorely missed by those who loved her. May she rest in peace.

Standing in my shoes – January 18th 2012

No matter how someone tries to understand what it's like to have Parkinson's disease, I don't think anyone but fellow sufferers, can really fully comprehend. One of the reasons I wrote my book of poems was not only to let other PD sufferers know they are not alone, but to educate and bring greater awareness of this dreadful debilitating incurable disease. With the medications on offer today, the visible well known symptoms of shaking and tremors can be reduced, but there is a large array of other symptoms apart from simply shaking. I can't tell you how many times people who do not understand the disease, take one look at me, see my long thick hair, my face made up, decently dressed and of course (what really confuses them) is the constant smile on my face and good humour. Generally people don't realise how underneath this façade, (which is a necessary emotional tool keeping me sane and enabling me to get through each day), that below all this, I am in considerable pain, feel very unwell and could they magically stand in my shoes for a moment, they would truly be shocked. I wouldn't wish Parkinson's on anyone, not even for just two minutes standing in my shoes!

A long day – January 19th 2012

Regular hospital check-ups are all part and parcel of one's regular routine when suffering any chronic disease. Yesterday was a long tiring day, undergoing various tests, not to mention the long journey there and back. However I am very grateful to be in such good hands receiving the best medical attention I could wish for. So I make the best of my lot. Someone e-mailed me about yesterday's blog entry "standing in my shoes", realising it was in fact a line from one of my poems:

"No one can imagine, unless in my shoes they stand,

The constant pain and suffering I endure,

Gaucher and Parkinson's disease, battle hand in hand,

Which disease will win, I'm not too sure."

Beware of zealous shop assistants – January 20th 2012

When it occurs that everyone at the pharmacy recognise you, know your name and even remember what medicines you take, this is when you realise how frequently you visit the pharmacy. I made the mistake once of walking down the make-up aisle, an error I will not repeat. The sales ladies are truly relentless and aggressive in their selling techniques, appearing to sneak up on unsuspecting customers, ensnaring them to buy things they never intended purchasing. I suddenly found myself virtually being accosted by one of the enthusiastic staff and before I knew it she was applying makeup to my face, and seconds later was escorting me by my arm towards the cash desk. I was almost in a daze in which the speed of it all happened, and clutching face cream, rouge, and eye shadow, none of which I needed, I fortunately came to my senses and put down the items quickly leaving the pharmacy. Although I give the sales assistants 10 out of 10 for being persistent, I now steer clear of these zealous women who must work on commission and will go to any length ensuring a sale. So a little advice, when in the pharmacy, avoid the make-up aisle at all costs, unless of course you intend purchasing.

Tulips – the Parkinson's symbol – January 22nd 2012

At a flower stall I saw beautiful fresh red tulips, and as I looked up, smiling warmly the stall holder handed me a small bunch. I said I wasn't buying flowers today, but simply admiring the colourful arrangement. He said the tulips were for me and there was no charge! I said "thank you, but couldn't accept them", and I then told him that the tulip is the symbol used for Parkinson's. He hadn't known this, and picked up some anemones and asked me if they were symbolic too. I told him I didn't know, and that not every flower is a symbol for something, but that anemones happen to be my favourite flower. At this he smiled and told me "Anemones must be for polite English women who don't accept free flowers." I think you can probably guess what happened next; I came home with a bunch of anemones!

A blog a day keeps isolation away! – January 23rd 2012

I was asked how I decide what to write on my blog each day. I simply write what I'm thinking about, or share something difficult or amusing that has occurred. I write the truth whether it be happy or sad, fun to read or hard to take in. Some entries are on a serious note, others factual, giving ideas or useful tips I've learnt, and occasionally I'll use my blog to answer anonymous questions. Although I strongly advocate staying positive and cheerful, retaining a sense of humour and making the most out of your life, it would be a farce if I were to deny having moments like everyone, of doubt and sadness now and then. Life is about the ups and downs and "being in the moment". No one can be "up" the entire time, this is unrealistic, there are bound to be the occasional "down" periods, which is perfectly normal. The purpose of my blog is to offer support to others, writing in a frank manner from my heart, relating to daily struggles and difficulties in an honest and candid manner with a little humour. One of the verses in the first poem of my book refers to life as a rollercoaster:

"I'm luckier than most, a good man by my side,

Who is best friend and husband, truly my pride,

My daughter helps bring, joy to life's ride,

As along this shaking, rollercoaster I slide."

Statue-like, but far from statuesque! – January 24th 2012

Going to the doctor is a major outing nowadays. Walking from the car to the doctor's office and back again today, was like a mini marathon for these legs of mine that scarcely belong to me anymore. Coming to a grinding halt, I froze in the car park as we walked back to our car. Standing like a mime artist performing a human statue, all I was missing was the white face paint and a hat to collect coins from passers-by. Standing as if a statue, but far from statuesque, I was reminded of the lovely film "Mrs Henderson Presents", where young ladies stayed perfectly still like human tableaus on the stage of a West End Theatre. I hasten to add I looked nothing like these visions of beauty, as I stood hunched and motionless, pathetically clinging to my walking stick. Fortunately no cars were around, and after a little while I managed to start walking again, at a snail's pace, but at least I was moving and made it safely back to the car. So should you ever see someone standing like a statue but with no face paint or costume on, they could very well be a frozen Parkinson's patient!

Three inches makes such a difference! – January 26th 2012

Sometimes you need someone to be totally honest and thankfully a friend who has been in the fashion business for some years, with much experience and expertise under her belt, has given me the tools to do my own "make over". I like my hair long, and it suits me best this way, but wearing it too long made me look unkempt and old. I took her suggestion to heart, so today bravely had 3 inches cut off the length of my hair and re-shaped. I look so much better, and feel great, who knew that 3 inches could make such a difference! Getting good advice is often all one really needs, and if you take a look at www.wardrobe.co.uk you can glean some good ideas of what looks elegantly fashionable, classic and stylish yet remaining young. This Web site might give you some ideas of how to improve your own wardrobe, so you too can have a "make over".

Parkinson's Proof – January 27th 2012

Having bought the simplest of mobile phones (being a technophobe) and having found a model with large enough buttons for me to use comfortably, has proven to be a very good choice indeed. Having Parkinson's, as any sufferer will confirm, dropping things is a common daily occurrence, and my mobile on several occasions has ended up on the floor, but clearly has survived. So as inexpensive and simple as my phone may be, it is proving to be "Parkinson's proof"! It is very windy and cold here, so am wrapping up warm today. Have a good weekend.

Lady with the red hat – January 29th 2012

Some time ago I received an e-mail with a poem entitled "When I am an old woman I shall wear purple with a red hat that doesn't go and doesn't suit me", symbolising that a lady of mature age should not be concerned what others think (The Red Hat Society). I'm sure this poem made its rounds, and you more than likely read it too. So many jokes, stories and such are passed around and around via e-mail, forwarded at a touch of a button to all those you know. This morning, I saw a lady striding along with all the vigour and enthusiasm of youth, although I'm sure she was well into her 80's, her head held high, poised and well-dressed apart from one very obvious article that immediately caught my eye. Adorning her head was a large bright red hat! It was almost as if she too had seen the e-mail about a woman wearing a red hat and was proudly confidently making a statement announcing to all, reaching a certain age, having wisdom and experience under her belt, she really didn't care what other people thought about her. This is one of the perks of reaching a grand age that you can get away with wearing a huge bright red hat! I looked at her, and thought to myself, "good for you"!

Never judge a book by its cover – January 30th 2012

Walking into a room full of people you don't know is daunting for most people, but when you have Parkinson's the feeling is compounded. Most look the other way, hoping they won't be introduced or get stuck talking with the person who shuffles and has difficulty walking. It's clearly not a broken leg or a strained foot, for there is something else which they can't quite put their finger on. Offered something to eat in this type of environment, I immediately decline. That's all I need, to drop food, difficulty in cutting with a knife, or heaven forbid I should choke whilst trying to swallow. Being in this kind of unfamiliar surroundings with people you don't know and who are unaware you have PD, is a nightmare and one I try to avoid like the plague. The tension and stress of the situation naturally exacerbates the Parkinson's and my situation gets worse. Looking around at all the faces absorbed in conversation with each other, I sit by myself, and wonder if it had occurred to anyone that maybe, just maybe I might be an interesting and fun person to talk to. Never judge a book by its cover. I may very well resemble a book that's worn and torn, a little worse off for wear, but I have a fascinating story to tell, if only you'd look my way and open a page!

A book well worth a look – January 31st 2012

Several days ago I wrote on my blog about "Stigma" as I feel there is a strong need for education and greater awareness on various health issues. I then happened to read a book by Jill Sadowsky called: 'David's Story' http://www.jillsmentalhealthresources.wordpress.com This amazing courageous lady has written a compelling story about her son. I am in constant awe of the human spirit, reading this lady's story the other day, blew me away. I think everyone has inner strengths that we can call upon when in times of need, and although we might feel ill-equipped to deal with certain terrible life changing circumstances, step by step, one day at a time, we can cope with far more than we would ever imagine.

I welcome feedback – February 2nd 2012

I have received quite a few e-mails asking how to leave a comment on my blog without revealing personal information or identity. I understand and respect your wishes to remain anonymous. Once you are on my Blog page: go to the end of the particular blog entry that you want to comment on and you'll see "Comment" at the bottom, click on this and then write your comment in the box that will appear. Then click on "Select Profile" after which click on "Anonymous". Then click on "Publish", and type in the security word that appears (this is just to ensure you're not a machine but a real person) and then click on "Publish" once more. It's as easy as that. I welcome any questions and appreciate your comments, any feedback is warmly received. Wishing you a great day and good health.

I just can't sit still – February 3rd 2012

I pity anyone unfortunate enough to sit behind me at a lecture, unable to sit still; my constant fidgeting must really irritate others. Likewise, I think I should stay clear of auction houses too. Can you imagine with every twitch, jerky movement or shake; with no intention of purchasing anything at all, I could put the price up of whatever is going under the auctioneer's hammer. Playing Poker or Bridge would also be highly distracting to any serious player should they find themselves at my table. So I think I should stick to activities where it is perfectly alright to wriggle and shake. This morning we saw many people in an organised run, escorted by police cars and support teams, and presume it was in aid of Cancer, as all the women were wearing pink hair bands. How I would love to be able to run but I can neither run nor sit still, but I do my utmost to live life to the full, and will enjoy the weekend, seeing family and friends, who enrich our lives. Have a great weekend, and enjoy, relax and spend time with people who make you smile and laugh.

Good morning to all - February 5th 2012

I've always been bad at recognising people, and remembering names even worse, so taking a leaf out of my mother's book, it became far easier and less embarrassing to simply smile and say hello to everyone I meet. Visiting a retirement home nearby, it can take me half an hour to get from the door to the actual room I am visiting, for along the way I say hello and chat to all the residents and the staff who know me well, and then upon leaving, the whole episode is repeated by saying goodbye. In the 24 hour care unit, where sadly residents no longer able to care for themselves, wheel chair bound, and in a condition that no one wishes to be in; I find myself drawn to these people who are now merely a shell of the person they once used to be. Looking around at the men and women, each one someone's mother or father, all with an interesting past, a long life filled with experiences and marvellous stories to tell. But like a well-kept secret, they are now out of our reach. It's so important to listen to our parents and grandparent's stories whilst they can still remember and retell them, for once they have gone, those precious pieces of your family's roots and history are lost. So when your grandparent or parent repeats a story for the umpteenth time, listen with patience, compassion and remember what they impart, for one day you'll be glad you listened.

Hats off to the staff – February 6th 2012

I take my hat off to the amazing staff who work at the Retirement Home nearby. I have been visiting there regularly for the past five years, and on many occasion have had opportunity to witness first-hand the very high standards to which the facility is run. The staff are indeed quite remarkable, and it is not merely a job, but a vocation. They are dedicated, caring and compassionate, treating the residents with dignity and grace. The patience and gentle understanding they demonstrate is clearly evident, and should it ever be deemed necessary for me to be placed in a Home, I hope I am fortunate enough to be cared for in a residence with comparable standards. It is heart-warming to see the kindness and empathy with which they carry out their daily duties. One truly sees the best of humanity.

A film worth seeing – February 7th 2012

We watched a film called "Love and other drugs" starring Anne Hathaway and Jake Gyllenhaal, which is about a 26 year old woman diagnosed with Parkinson's. The story is a drama/romance winning awards at the Golden Globes for 2011, and is well worth seeing. Needless to say anyone with Parkinson's will undeniably relate to many of the scenarios, but the film would appeal to a wide audience for the captivating attraction and enduring love between a woman and man enchantingly speaks universally to us all.

Birthdays – February 8th 2012

It is not my birthday today, but it would have been someone's birthday who will always be very dear to my heart, and is greatly missed. The pain of losing someone close never entirely goes away, and my heart will constantly ache for my loss. We have always made a big fuss of birthdays in our family, and I will continue this tradition. I don't think of a birthday as one aging and simply growing a year older. Instead I see it as a time to celebrate that someone special was born, enabling you to express appreciation that they are part of your life, a time to reflect on all the happy occasions and memories, giving a good opportunity to show you care.

Exciting Parkinson's breakthrough – February 9th 2012

A news report by Michelle Roberts (Health Reporter) for the BBC News wrote about Genetic Parkinson's disease brain cells made in a laboratory. The breakthrough means they can now see exactly how mutations in the parkin gene cause the disease in an estimated one in 10 patients with Parkinson's. If you would like to read the article for yourself, here is the link: http://www.bbc.co.uk/news/health-16913997 With so much research going on all around the world, let's hope a cure is not too far away.

Don't end up on your butt! - February 10th 2012

They say most accidents happen in the home, and having Parkinson's I am very wary of falling on my butt, particularly in the bathroom. A broken hip or leg is the last thing I need! There are several things that one can do to make things a little safer, such as "anti-slip mats" on the bathroom floor which provide a slip resistant surface. "Grab bars" are a great idea providing stability and support when standing or sitting. I have found a long handled bath brush invaluable since having limited range of motion, and is most helpful reaching my feet or back. Also "wash mitts" are helpful when losing dexterity in ones hands. If you are renovating a bathroom, think about putting a permanent bench (built into the shower area) which provides a safe and good place to sit whilst showering. If anyone has other useful suggestions, I would love to hear.

Home infusion, no intrusion – February 12th 2012

Having enzyme replacement therapy for Gaucher disease at home thankfully decreases the necessity for frequent hospital visits, thereby improving vastly my quality of life. Treatment of Gaucher today barely intrudes on my life at all, although I do feel somewhat like a pin cushion, many needles stuck in me over the years, but I take this in my stride. So here I sit once again, hooked up to an i.v. line, which I receive twice a month keeping Gaucher disease under control. Gaucher being a rare chronic genetic disease, there was no treatment available until 1990, when the first ever treatment was finally tested and proven. Today, fortunately science and medicine have come a long way, and there are several companies now making the enzyme that Gaucher patients are missing. To date there is still no cure, but I live in hope, and as I said to a fellow PD sufferer just yesterday, I am the eternal optimist!

Speaking engagement – clad in armour – February 13th 2012

Tonight I have another speaking engagement, and see this as a great opportunity to spread the word bringing greater awareness about Gaucher and Parkinson's disease. Whilst I can still talk and get my message out there, I shall endeavour not to miss any chance to speak, whether to a small or large audience. I rested all day yesterday, and intend doing nothing today so I shall have enough strength to deliver and impart, what has become somewhat of a campaign over the last few months. Information and education is my crusade, I have a smile as my shield, and a strong fighting spirit as my armour. I'm ready for battle – bring on the public speaking!

Valentine's Day Parkinson's Way – February 14th 2012

I enjoyed meeting a lovely group of ladies last night when I was given the opportunity to speak to them about living with Gaucher and Parkinson's, imparting some knowledge whilst demonstrating one can live a full happy life, be positive and cheerful despite battling two chronic diseases. I hope I gave you all food for thought and appreciate that good health is a precious gift.

A romantic at heart, I cannot let Valentine's Day go past without indulging in a little romance and as foolish as it may sound, I rather like receiving red roses and chocolates. Although Valentine's Day is not celebrated everywhere, it has become more known and popular as the years pass. I believe that any excuse to legitimately be sentimental, expressing ones passion and indulging in some romance, is something we could all do with a little more. I for one will be making a special dinner, starting with cocktails, shaken not stirred (of course!), followed by......well I had better not say any more for my husband may very well be reading this, and I'll have blown the surprise. So the remainder I will leave to your imagination. Have a happy Valentine's Day.

There's no place like home - February 15th 2012

Being disabled, I spend much time at home, so it's important that I feel good in my surroundings. The kitchen seems to be the central element of our home, a place where everyone congregates, by the warmth of the stove, where a pot is merrily simmering, beckoning to taste a comforting bowl of hot soup. The oven exuding the delicious smells of a chocolate cake that has yet to make its appearance and the tempting aroma of freshly brewed coffee floats through the air invitingly, as all are gathered around our small kitchen table, in a squashed but cosy atmosphere. They say that "home is where the heart is" and as corny as this may sound, I think it's very true. No matter where one travels, be it business or pleasure, there is no place like home.

Profoundly life changing – February 16th 2012

Talking with a man I've known for some years, I was taken aback by his account of how a heart attack had profoundly changed his view on life. As if by grace given a second chance, his ordeal left him with the gift to see life from a clear uncluttered perspective. He is able to really see what is important, pays attention, noticing things others are oblivious to, and knows what matters most. He has miraculously been given the insight to what so many spend a life time searching for. So I now realise that this unassuming, quiet, charming man, 'gets it'! Still waters run deep. As in the popular award winning film "Avatar", one of the lines comes to mind: "I see you"!

Guess Who's Coming to Dinner? – February 17th 2012

"Guess who's coming to dinner?" I asked my husband. He hadn't a clue, but knew it wasn't Sidney Poitier. We were delighted to have over for dinner Jill Sadowsky, the marvellous author of "David's Story". Jill is a courageous, amazing woman, who speaks with compassion and insight. I found we have very much in common, and share a mutual passion in education and awareness. Sadly, in our modern world, we still need to stamp out stigma and shame regarding mental health and disability – making these undesirable character flaws a thing of the past. It was a pleasure meeting this remarkable lady who is on a mission, like me, so here is her blog site if you would like to take a look http://www.jillsmentalhealthresources.wordpress.com

Have a great weekend everyone and I hope you do something enjoyable, spending time with those you love. Wishing you all good health.

Identifying pain - February 19th 2012

Parkinson's patients experience a certain amount of pain, some obviously explained such as muscular and other pains not entirely explicable. Having Gaucher and Parkinson's disease puts me in a unique position (believe me, I would far rather not be quite so unique!) in experiencing two completely different sets of pains which I can generally distinguish between. I had a tooth ache some years ago, which reflected down into the jaw bone for a few days. I made an appointment with the dentist, but the following day the pain mysteriously abated. I didn't cancel my appointment for fear that the pain would surely return. The next day I went to the dentist, even though the pain still had not returned. Our wonderful dentist, who I trust implicitly, checked thoroughly but could find no explanation why the pain had suddenly appeared and then magically disappeared. There seemed to be nothing wrong at all, so I returned home, and several years have now passed and this tooth has never bothered me since! Should you have Gaucher or Parkinson's, or incredibly lucky enough to have both like me (I say this with great sarcasm!), bear in mind it could very well be an inexplicable pain not related to your teeth at all. I found an article about pain with Parkinson's and after reading it, wanted to share it with you.

http://www.youngparkinsons.org/articles/is-pain-a-symptom-of-parkinsons-disease

Lost for words \- February 20th 2012

It is so frustrating to be in the middle of a conversation, when all of a sudden words escape me, or I simply forget what I was talking about having gone off at a tangent. Family and friends are most understanding, and sometimes a form of charades ensues, making the whole pathetic and rather embarrassing situation a little lighter. I also have acquired the uncanny ability of saying a sentence back to front, or pronouncing words wrongly. On occasion I even invent an entirely new word that could very well be of interest to the Oxford English Dictionary should they be short of new words for their ever expanding volume. In fact thinking about, it's amazing anyone can understand me at all, yet thankfully my writing ability does not appear to be affected. A doctor once explained to me the difference between the brain's ability of 'speech' and 'writing', and why my memory is poor, but for the life of me I can't remember what he said!

An Amazing story – February 21st 2012

I am very excited as my story of how I obtained an old fashioned Singer sewing machine has been published on Singer's site, who is celebrating their 160th birthday. I hope you enjoy reading my story entitled "For many years I've wanted" (Feb 19th) which is an amazing story - these things don't happen just by chance - it's one in a million! Have a great day. www.mysingerstory.com

Go to the mattresses - February 22nd 2012

I'm all in favour of a bargain, and I know it's kind of sad, but the mere mention of a "sale" and my heart starts racing. But seriously, if I can be serious for a moment; when it comes to purchasing a good orthopaedic mattress, I believe in buying the best and most comfortable one can afford. Think of how many hours you spend each night, every week, month, year after year lying on a mattress. Spending so many hours in bed, I think it is imperative that one should have the proper support, no matter what the cost – its money well spent. I don't think this is quite what the Godfather had in mind when he said "Go to the mattresses"! What a great classic film!

A good hand - February 23rd 2012

I found the other day a "Four Suiter Card Holder". If you are a card player, this is a wonderful idea that makes holding multiple cards in one hand so much easier. This holder is made from wood, has four-tiers, allowing you to view all your cards. When I saw this gadget, it brought to mind the verse of one of my poems:

" _As the disease progresses, dignity goes out the door,_

The shell of the person, who once was, is now a façade,

And just when you think, you can't take any more,

Parkinson's deals you, one more terrible card."

Three wishes - February 24th 2012

When my daughter was very young, someone asked her "If you had three wishes, what would they be?" The answer was typical of any child that age and I believe it went something along the lines of: "Going to Disneyland, getting a puppy and living in a big house with a swimming pool." The person questioning her asked "Wouldn't you wish that your mummy didn't have Gaucher disease?" to which my daughter's direct and straightforward answer without a moment's hesitation was: "Mummy wouldn't be the same mummy without Gaucher!" This statement so honest and simple from a child's perspective, made me think. My daughter had never known anything else – I had been ill since she was born. Just as some mothers have blonde hair or work from 9-5 in an office, I have Gaucher disease. It's as simple as that. There was never a question or thought in her mind of wanting or wishing for a different mother. Gaucher doesn't define who I am, but without doubt it is part of my life. What defines me is who I am and what I do. Despite having Gaucher and Parkinson's I continue to live my life to the full, and do my utmost to bring greater awareness of these two diseases, whilst helping and offering support to others wherever I can. However, if there are any genies or fairy Godmother's out there reading my blog – could you please grant me three wishes (I'd make do with even just one wish)!

Vitamin D February - 26th 2012

Vitamin D deficiencies are common today. Years ago we thought nothing of spending time outdoors in the sun, allowing our bodies to naturally absorb vitamin D, but in recent years with concern about skin cancer, we are all too ready to slap on sunscreen before spending even short periods outside. Although one should be vigilant not to burn and be aware of skin damage and changes, I think we've taken things too far and many of us are not receiving the correct amount of vitamin D from natural sunlight. I was shocked a while ago to find I had a serious deficiency and am now taking oral drops daily to replenish this deficit. If you are like me, spend most of the time at home inside away from the sun, a serious lack of Vitamin D can affect many areas of one's well-being – something we should all be aware of. Our garden is like a sun-trap, so you know where I'll be sitting later today!

Caregiver Respite - 27th February 2012

Being a caregiver is not an easy job, and many don't fully understand how demanding, stressful and never ending this uninvited role becomes. It's a responsibility that never goes away – 24/7 and sparks many emotions in both parties; the caregiver and the one who is disabled. I am well aware of how my devoted wonderful husband needs a break from the daily task of taking care of me. My husband has a Skipper's Licence, and had the opportunity of sailing with a group of other qualified skippers for five days. Naturally part of me didn't want him to go, but I knew it was important for him to clear his head, have a complete break from work and looking after me. It took them 28 hours to sail non-stop there with winds of 25 knots, swells and waves up to 2 meters. They moored for a day in a marina, going ashore to sample local cuisine, before making the return journey. This morning my sweetheart returned home, and it's awfully good to have him back. He looks great, and has had an amazing experience, an adventure that re-charged his batteries and did him the world of good. So my advice to any caregiver is to take care of yourself, for you deserve a break and it's essential to take leave now and then. Likewise I would say to any fellow sufferer, how crucial it is consenting wholeheartedly for your caregiver to have a deserved time-out, acknowledging their needs are just as important.

Support Team – February 28th 2012

I have to say a big "thank you" to my daughter and the ladies who kept an eye on me whilst my darling was sailing on the high seas. Their friendship and support is a valued gift and got me through the week. I don't know if they gathered together and pre-planned their "support relay" but I was kept well entertained, busy and fed during the five days my husband was away. I even had marvellous phone and Internet support. What more could I have asked for? Receiving wonderful support, whether family or friends is priceless, and I consider myself very lucky indeed. Through writing my book and blog each day, I have also made invaluable contacts with other fellow sufferers and a sort of global support network has been created. To be in communication with someone half way across the world that has Parkinson's, lending a listening ear that relate and understand totally, is pretty cool I think. Ladies, I truly appreciate your concern and support - thank you all.

Rare Disease Awareness Day – February 29th 2012

Many diseases have a special awareness day each year, such as Parkinson's disease which is on April 11th commemorating Dr. James Parkinson's birthday. Rare diseases by definition aren't afforded the same exposure, so many are grouped together, including Gaucher's disease, and Awareness Day for Rare Diseases is rather appropriately assigned to 29th February. Gaucher Disease was discovered by a French Doctor Charles Ernest Gaucher (1854 –1918). Although Gaucher disease was first documented in 1882, it was only in 1965 that the true biochemical nature of Gaucher was understood. If you would like to join me in bringing awareness of Gaucher and other rare diseases, simply leave a comment on this Blog entry (anonymously if you wish) as a way of showing your support or take a look at Rare Disease Awareness Day Site.

A new walker – 1st March 2012

One of my favourite things was walking our dog. Having Parkinson's sadly this is yet one more thing that I can no longer do and have had to come to terms with. I miss the leisurely long walks in the forest, rambling through the fields, strolling along the beach, and taking her with me where ever I would go. Walking is the by far the best exercise (or so they say) but having Parkinson's and keeping as fit as possible is extremely difficult when mobility is limited. Our poor dog misses the walks and outings too, and after having her weighed at the vet recently, she indeed needs more exercise, as I was shocked by her weight. Mind you, in her defence, I do drop a lot of food whilst cooking, which she diligently devours – our vacuum cleaner on four fury legs! So if I am to continue dropping food, our dog needs more exercise. I guess the upside of this is that she will keep other members of the family in shape! Exercise is very important and I found the Dashaway which is a new rehabilitative device designed by a Parkinson's sufferer. At first glance it looks very much like a walker that you see in Retirement Homes, but there are some differences. Keeping active can help slow the progression of the disease to some degree, and this 'walker' is being used as a rehabilitation device and for exercise, giving either full or partial support. Have a look for yourself www.dashaway.net

Making things easy – March 2nd 2012

Getting dressed is such a performance these days; I am always on the lookout for clothing or accessories that are "Parkinson's friendly". I found a wonderful scarf which is like a long tube, and can be wrapped in different ways resulting in quite an elegant look, but the clever thing is, once this scarf is on, it doesn't flop down or fall off – it stays put, which is great! It comes in various colours and a wonderful addition to one's wardrobe. Being disabled, and not terribly mobile, I feel the cold more than others who are physically active. I don't want to be wrapped in a blanket resembling an old lady, so this stylish scarf does just the trick in keeping my shoulders and neck warm. As for footwear, the man who invented Velcro in 1948, George deMestral (a Swiss engineer) – God bless him, for he must have had Parkinson's in mind. Doing shoes up that have Velcro straps makes life so much easier than the frustrations of fiddling with tying laces or doing up buckles.

Sad News – March 4th 2012

I write this entry with a sad and heavy heart, for I lost my dear mother on Friday night. She was 92 and lived in a Retirement Home, where she received the very best of care. Although frail and weak, she fortunately drifted off peacefully in her sleep, after having lived a long and full life. My mother was a remarkable woman, with great spirit and a strong heart. She was very sociable, and hospitable, an amazing cook, generous to a fault and loved her family dearly. She had a passion for life which is probably where I received my resilient nature from and she never missed an opportunity or wasted a moment. She would always say "Never let the grass grow under your feet", and I think we all live by this. I will miss her very much but have many wonderful memories to hold on to, as I'm sure anyone who knew her will agree, for she was a special lady, a mother, grandmother and great grandmother. You will therefore have to excuse me for not writing further in my blog for a few days.

Appreciation – March 11th 2012

I would like to thank my dear family and friends who have shown me great support and comfort during these past few days. On the passing of my mother, being surrounded by loved ones and feeling the warmth and care clearly demonstrated has given me the strength to get through this sad but inevitable time. No one likes going to funerals, but making the effort to attend on a cold windy day or paying a condolence call, shows respect not only to the person who has passed on, but to the grieving family. I appreciate everyone who came and rallied around me, lifting me up at this difficult time. I know it's hard knowing what to say in these circumstances, but merely showing up speaks volumes, a hug or a few simple words are all that it takes to make a difference. I am touched and honoured to have so many wonderful people in my life.

Thank you – March 12th 2012

I feel compelled to write about the incredible staff at the Retirement Home where my mother lived for the past few years. Working there is not simply a job; it is a vocation, which they do professionally and with great dedication. Every person in the 24 hour care unit is someone's mother or father, and the way in which they are treated with dignity and compassion is heart-warming. To know that my mother has been in such caring hands has enabled me to sleep soundly at night, feeling confident that she was in the best possible place. Each member of the staff perform different duties, working together to create a highly proficient team.  They receive little thanks or response from those they tirelessly take care of, day in and day out, and the work is highly physical and emotionally demanding. I paid close attention every time I visited and was nothing but impressed by their unending patience and consideration.  I do not have enough words to express my feelings of deep gratitude. I will never forget their kindness and thank them all from the bottom of my heart in making my mother's last year's so happy and safe.

Stress Alert! – March 13th 2012

I have always heard and read about how stress and worry can exacerbate Parkinson's, but it wasn't till recently when I was under some pretty heavy emotional stress (self-imposed I have to admit) that I fully understood how detrimental it is. In the space of just one week, my condition had severely deteriorated at an alarming speed. I began to wonder if I had pushed the disease into an advanced stage and wouldn't return to where I was a week earlier. Thankfully once I realised what was happening, and  the stressful episode came to an end, I began to feel a little better, and after a few days I have returned more or less to how I was last week. I now realise how dangerous emotional stress can be for a Parkinson's patient. Although stress can't always be avoided in life, it is important to comprehend the extensive damage it can cause.

My Cover Story – March 14th 2012

Many have asked me what the picture is on the front cover of my book "Parkinson's, shaken, not stirred". Family and friends know, but after recent events I thought I should maybe share it with you all. The photo is of a lemon blossom from my lemon tree in our garden. This tree was bought for me several years ago by one of my brothers. He suffered from Gaucher and later on in life was diagnosed with Parkinson's. Sadly having PD for just several years, he passed away too young at the age of 63. He was very successful in his work, but his job was extremely stressful. After experiencing personally what emotional stress can do, exacerbating Parkinson's at a frightening speed, I am beginning to understand how and why he deteriorated, going downhill so quickly that even the doctors were surprised. Now you know why I put a photograph of lemon blossom on the front cover, representing a personal and silent dedication to my brother. I hope he is in a better place now, pain free, and without the restraints and suffering of disease. He is very much missed.

Reducing Stress – March 15th 2012

Whatever you can do to reduce stress to a minimum is highly advisable. Everyone is different and therefore what works for one person doesn't necessarily work for someone else. Meditation is excellent and Yoga if you can manage it. Listening to music, gardening or any activity where your mind can focus on something else relieves harmful stress that is so damaging. For me writing works best, by pouring my thoughts down on paper really helps me. I can't say it totally removes whatever I am stressing or worrying about, but it can lessen the intensity by putting it in perspective. I can't stress enough (forgive the pun) how detrimental stress, worries and tension can exacerbate your health. So please, take a big deep breath, and find what works best to relax and calm you.

Medications & Mealtimes - March 16th 2012

Through trial and error I have recently come to the conclusion that leaving a larger gap between taking medications and eating allows the pills to work far more efficiently, hence giving me a better quality of life. I received a great information sheet regarding medications and mealtimes, written by Jackie Barzely, a fellow Parkinson's patient which is being used to assist patients attending hospital PD clinics. If you would like to receive this information sheet, please e-mail Jackie at jackiebarz@gmail.com and she will send it to you as an attachment. Have a good weekend everyone.

No Oscar Nomination - March 18th 2012

Sitting at the dining table, I was suddenly hit by a wave of nausea, dizziness and then the strangest thing happened to my eyesight. The best way I can describe what I was seeing, is if you can imagine looking at an old 8mm cine film that has reached the end, getting stuck on the same frame, the picture in front of your eyes keeps flickering up and down. This disconcerting eye movement shaking my equilibrium thankfully lasts only approximately 20 seconds at a time, (for now). Having a routine check-up with my wonderful Neurologist, I was told this interesting although disturbing phenomena is called: Opsillopsia, which is normally associated with neurological disorders. How delighted am I (this is said with great sarcasm) that I now have yet another symptom to add to my ever growing array that makes my life far from boring! I love watching films, so I guess Opsillopsia (if one can even pronounce it) is quite fitting, making me feel that I'm constantly at the cinema. Someone recently hearing about my life said to me, "your story would make a great film", which left me a little uncertain, not entirely sure that this was a compliment. However, I seriously doubt that anyone has ever been nominated or won an Oscar for having Gaucher, Parkinson's and Opsillopsia.

Family medical history - March 19th 2012

Looking at statistics about various diseases, it makes me wonder whether our generation is more prone to disease due to our fast paced lifestyle than previous generations, or is it simply that today we freely talk about illness that was once frowned upon and accurate diagnosis methods have come a long way. A huge factor that also comes into play is today's technology, making the world a much smaller place. Computers, e-mail, Internet all at our disposal, are connecting hospitals, R&D, doctors, patients and caregivers from all around the globe, thereby sharing information and statistics. I was looking at our family tree that was made some years ago; using many sheets of A4 paper cello taped together resembling a paper patchwork quilt. Whilst looking at this faded dishevelled map of our family, I suspect many of my ancestors had Gaucher, but were never diagnosed back in those days when little was known about this rare disease. Keeping records of family medical history is important and can possibly help future generations. Thankfully today, most information is kept on computers making it easy to keep and retrieve when necessary.

Clinical Trials - March 20th 2012

I have always been greatly in favour of taking part in clinical trials. After all there is only so far any research or scientist can go with a mouse or rat! At some point, a human subject is required testing new drugs or treatments to be properly assessed and deemed safe and effective. I have taken part in a few clinical trials over the years, and although I'm always a willing party, I first check thoroughly with the various doctors who take care of me, to ensure that I'm not entering into something dangerous that may have irreversible ramifications. It's bad enough suffering chronic disease, but I find a small consolation by taking part in clinical trials, where possibly helping solve the missing part of the puzzle in finding a cure. Hopefully participation in trials may end up helping millions of PD sufferers around the world. Not only is that very exciting, but I think it's pretty cool.

Daunting occasions - March 21st 2012

Going to a function, be it a wedding or other occasion can be daunting for anyone with Parkinson's. Most halls today fortunately take into consideration disabled persons; parking spots allocated near to the entrance and slopes or ramps for wheelchairs are provided. However, the difficulties encountered are often not these obvious ones, but simple things people may not understand or appreciate. Walking with a crutch in one hand, a tiny evening bag in my other hand, leaves me unable to hold a glass or a small plate of food with a fork and be expected to eat whilst standing up. The logistics are simply impossible. I'm afraid of dropping the whole lot on the floor, or down the front of my dress, and so I politely refuse any drink or food that is offered to me, for I simply cannot manage. Sometimes at these types of receptions there are few chairs, and only very high bar stool type seating is available – again a big problem for anyone disabled. Watching everyone else tucking into the tasty hors D'oeuvres and sipping champagne from elegant long stemmed glasses, leaves me feeling upset and frustrated that I am afraid to join in such a simple activity. Those who know me personally understand, but it wouldn't occur to a stranger, who doesn't realise my situation, why I am refraining from drinking or eating anything. Parkinson's affects every aspect of one's life, and leaves nothing unchanged.

The best ammunition - March 22nd

Having experienced how stress and worry can speed up exacerbating Parkinson's disease at an alarming speed, the best ammunition against this terror is to keep busy, remain as calm and cheerful as possible and having a sense of humour and fun is of the utmost importance. I absolutely refuse to let Parkinson's get the better of me. I have strong conviction, a fighting spirit, and much to do; I deny Parkinson's to get the upper hand.  Seeing that I don't work and am quite ill, you wouldn't believe how busy I am. There don't appear to be enough hours in the day, and I'm perpetually exhausted, but all this is keeping me going. Cyril Northcote Parkinson wrote "Parkinson's Law" and I quote: "Work expands so as to fill the time available for its completion." Rather appropriately my days are filled with this ever expanding project of mine to bring greater awareness through my book, writing this blog, speaking engagements and all that has spiralled off making this mission a full time endeavour.

Harvey the Rabbit - March 23rd 2012

Do you remember a charming old film called "Harvey" starring James Stewart? He befriends a Pookah which appears in the form of a six foot tall invisible rabbit called Harvey, and in case you ever wondered what happened to Harvey; he's living with us! Well at least we like to think so. Before you think I've lost my marbles let me explain, for I'm sure you too have an invisible visitor in your household who you blame for all sorts of faux pas, but you probably call him by another name. Whenever the last cookie in the barrel magically disappears and everyone says "I didn't take it", or suddenly the ice-cream tub in the freezer appears to mysteriously be empty, when a slice of pie you were saving for later vanishes, a light was left on all night by mistake, suddenly there's a pungent nasty smell that no one will own up to, a trail of sand or mud as if out of nowhere appears on the floor and everyone in your family says "it wasn't me!", who do you blame? We blame these things on Harvey. It's become a standing joke in our family, so if you ever come to visit us, and you have a mishap, just blame it on our six foot tall rabbit. Harvey's a big fellow, trust me, he can take it!

Man's best friend - March 25th 2012

Why do they refer to dogs as man's best friend? This sounds like a sexist comment to me, for a dog can be a woman's best friend too. But then again I'm sure you're familiar with the saying "diamonds are a girl's best friend"! Did we as the fairer sex get the better "best friend"? I'm not so sure. As lovely as diamonds are, there is nothing quite like the companionship and loyalty of a dog. Yesterday my faithful dog despite feeling unwell herself, still maintained her vigil making sure I was OK, following me around, sensing I was having a bad day. We sat together in the garden, warming our bones in the sun, and companionably spent a couple of relaxing hours out there. Having a dog is highly therapeutic, and although she is not a "show dog", she would certainly win first prize for her devotion, sensitivity to the frail and sick, her sharp instincts that I trust implicitly and her amazing ability to sense when I'm in danger or distress. This trusting wonderful dog takes care of me when no one else is at home, although I've yet to teach her how to make a cup of tea!

Bad posture - March 26th 2012

Many people have bad posture and don't stand up straight and tall, but this is a particularly common problem when one has Parkinson's. Muscles are weak and sore and often very noticeably at the dining table, I begin the meal sitting up straight, but slowly sink reverting into the classic hunched over "Parkinson's pose" which not only is unhealthy, literally squashing my lungs and upper torso but quite frankly it looks far from attractive. My family constantly prod me during mealtimes to sit up straight, but try as I might, after a few minutes I inevitably revert to a poor imitation of a relative from the hunch back of Nostradamus! I saw something remarkable that I've yet to try; called The ShouldersBack Posture Support. It's a lightweight vest-like brace which gently corrects poor posture. Designed for comfort and support, the adjustable Velcro straps (and I love Velcro!) allows you to alter the tension and control the corrective force for your specific needs. It says that wearing the ShouldersBack for just an hour a day is supposed to help retrain the shoulder muscles to support the head more effectively, allowing you to stand tall and straight and reduces back pain. I'm pretty sure one would need an assistant putting this support on, but it looks like a good idea. If anyone out there has got one of these, please let me know if it helps and really does the job.

How do you know when to help? - March 27th 2012

Family and friends are often in a quandary when to offer me help. No one wants to make me feel helpless and yet they also don't want to leave me struggling and frustrated when I do need assistance. It's a fine line to tread, knowing when to step in or when to hold back, and I appreciate the predicament. Being at family for dinner, I was eyeing the roast potatoes which looked crispy and delicious, but I refrained from taking any, as I could see they were going to prove very difficult to cut and would possibly end up ricocheting off the walls, awkwardly landing in someone's lap! Finally my husband who is finely tuned in to my needs and feelings, without a word or any fuss, took a potato and cut it up on my plate. As my family and friends become more aware of Parkinson's they are able to understand the limitations, the symptoms and how and when to offer help. Everyone has heard of Parkinson's – a common disease affecting millions across the world, but many don't know or understand the complex symptoms, sides effects of medications and what it is like to live 24/7 with a degenerative disease that accompanies one like a shadow. This is why I have taken on public speaking engagements, despite my poor condition; I feel strongly that if I can bring greater awareness, my suffering will not have been in vain. For no one can speak better about this subject, than a person who is battling daily with Parkinson's.

Voice Therapy - March 28th 2012

At a local hospital, speech therapy courses are held especially designed for Parkinson's patients. Someone commented on how my voice has improved over the last number of months in volume and strength, speaking sometimes slowly but clearly. I have found that public speaking has unwittingly been helping, and with the amount of talking I do, wherever I go, it's as if I am doing my own speech therapy every day. Standing in front of an audience, no matter the size, I immediately straighten up, trying to hold my shoulders back, allowing my lungs to fill completely to project my voice, forcing myself to speak and annunciate clearly. I am resolute in getting my message across and I want to make sure I'm heard and understood. I have always been a bit of a "chatter box" (my mother used to say it's inherited!) so I apologise to those who know me and have to endure my non-stop chatter.

A special place - March 29th 2012

Now the warmer weather is approaching, the days are sunny and warm, having a garden; I find I am spending much time out there. Being housebound, now unable to drive I don't get out that much, so the garden is becoming an invaluable escape from the confines of the house. Sitting outside in the fresh air, the sun warming my bones, admiring the flowers as they come into bloom, and enjoying the occasional wild life that frequents our tiny wild but inviting garden, makes me feel relaxed and calm. Having a place to go, whether it is a special room in your house, the garden, a balcony or somewhere else, everyone needs a tiny space they can call their own. Make sure you have a place where tranquillity reigns, so that you can relax and just be in the moment.

Huge ramifications March 30th 2012

When I had to stop working some years ago, I accepted this huge change quite easily and surprisingly filled the days, keeping myself occupied, and as far as my health was concerned, it was definitely the right decision. However, having to give up driving recently is completely different and far harder to come to terms with. The feeling of isolation and no longer being independent is immense. The ramifications of not being able to drive go far deeper and are more upsetting than I would ever have imagined. I joke at having our daughter as my own private chauffeur, and put on a brave face, but underneath my smile I am truly devastated. I have to think carefully about what groceries we need, and write a detailed list in advance, and buying presents for people is now a difficult task. Should I happen to forget something, I can't simply pop out and get it. I would love to go and leisurely window shop and simply look around a shopping mall, to refresh my eyes. But hardly anyone has the time or the patience to take me. I'm sure that this is a common problem that disabled people have to deal with, but to tell you the truth; I'm having a hard time with this one.

Invisible Chronic Illness - April 2nd 2012

I've lost count of how many times people have said to me; "you don't look disabled". What exactly do people expect a disabled person to look like? I presume the number one criteria is being in a wheelchair – after all if you can't walk, then you MUST be disabled. However it is not as simple and clear cut as this, and there are many chronic patients suffering an array of diseases, where they appear like everyone else. I've said this before, but I'll say it again: "never judge a book by its cover!" It's not a matter of an ill person giving the false impression of being well, but the other way around, that there is a predisposed idea of what an ill person should look like. Only those diseases where visually one can see a physical disability, do people immediately acknowledge the person as being ill, since they fit neatly into their prejudiced category. But when someone for instance, looks like me, it generally confuses people's concept of chronic disease. In their minds I shouldn't look like I do. This biased view is both irritating and frustrating, particularly when someone says to me: "but you look so well". I wonder what I'm supposed to look like to satisfy those who do not understand. Maybe I need to wear a badge indicating how I suffer daily, am in constant discomfort, take morphine for excruciating bone pain, am tired beyond the point of exhaustion and am just about holding it together. But what really throws a spanner in the works is that I have the audacity to smile and be cheerful – this is something that most people, including doctors cannot understand. Would you consider Asthma to be a chronic disease? Probably not, but if you take a look at a brave lady's site "Invisible Chronic Illness" who does not fit the mould of 'looking disabled' you'll see I'm not the only one!

I'm not Elaine from 'Seinfeld' - April 3rd 2012

I was speaking on the phone the other day, and the person on the other end couldn't hear me too well, and kept asking my name. I said "Elaine", to which he asked "Helen?" I said "No, my name is Elaine" trying to annunciate loud and clear, but he still couldn't hear properly and asked "Eileen?" Now feeling a little frustrated and almost shouting into the phone I said "Elaine, like Elaine in Seinfeld". As soon as I mentioned Seinfeld, he got my name right! Then came the kicker, "Do you dance like Elaine?" Almost feeling insulted I was about to say "no", but then realised in the sitcom 'Seinfeld', the character 'Elaine' does in fact dance in a jerky, spasmodic fashion, not dissimilar to a Parkinson's patient. My name is Elaine and yes I do dance kind of funny but I'm not the 'Elaine' from Seinfeld!

No need to shout! - April 4th 2012

Being in a wheel chair definitely puts you in a neat pigeon hole, of unmistakably being disabled. It's almost like having a neon sign above one's head indicating to all and sundry that your condition is serious. On several occasions, I have had the unfortunate experience of being totally ignored whilst someone asks my husband "what would she like to drink?" almost as if I'm not here. Why not ask me, I'm right under your nose? And should I have the good fortune to be spoken to, I look in amazement when someone speaks very slowly annunciating every word carefully, speaking extra loud as if I am stupid and hard of hearing. I can assure you I am neither! I find myself in a strange but probably common situation, for in a wheelchair I am ignored, talked about in the third party and clearly labelled disabled. Yet without my wheelchair, I look like anybody else, and people don't realise or take into consideration how serious my condition is.

Disabled friendly house - April 5th 2012

Living in a small apartment, we found ourselves thinking ahead to future years, and although not wanting to sound pessimistic, one has to be realistic. As the years pass we all grow older, therefore sensible planning is crucial making one's home comfortable, easy to maintain, taking into consideration old age, and in our case, my physical limitations and disability. We searched for some considerable time trying to find a home that would fit all our requirements, but this was a tall order to fill. We were unable to find a home in our area that had no steps leading to the front door, a master bedroom with en-suite bathroom on the ground floor (with no bath – just an open shower stall), easy access to the garden, and hallways and doors wide enough to accommodate a wheelchair. There are also many other small details, but important when planning ahead, such as light switches that are conveniently placed at a low enough point that can be reached should one be in a wheelchair. Talking with other disabled people who have remodelled or built their homes especially designed around disability, are a fountain of good advice and information. There are also official bodies, and architects who specialise in planning living accommodation with special needs in mind. The more information and ideas you manage to glean from others will ultimately make your home as comfortable and suitable as possible.

Parkinson's Awareness Month - April 6th 2012

This month is Parkinson's Awareness Month, and World Parkinson's Day is on the 11th April. People all around the world are raising funds in various ways towards research which we dearly hope will eventually bring about a cure. Show your support during this month, whether it's attending an event in aid of Parkinson's, fund raising, or spreading the word. Show your support during this month, whether it be fund raising, making a donation to The National Parkinson Foundation or to the MJF Foundation or help spread the word. Millions of people around the world are suffering from this degenerative terrible disease. We need to find a cure – we need your support!

Finding the right balance – April 8th 2012

Talking with a fellow Parkinson's sufferer, we both agreed upon the importance of finding the right balance between accepting diagnosis along with the limitations and changes that continually manifest, whilst still maintaining cheerful and positive putting up a fight refusing Parkinson's to rule the day. Finding this delicate balance is not easy, but we both seem to be doing the best we can. Talking with someone who is going through the same dramatic life changing events, whether it is bereavement, divorce, or in my case chronic illness, support is immensely valuable. Support groups are a very important resource, but if logistically it's not possible to attend, this is where Internet communication saves the day. I am in contact with many PD sufferers around the world, creating a web of support. It may not be quite the same as sitting in a room with other people, but we are there for each other at the click of a mouse.

Additional strains - April 9th 2012

People, who are blessed with good health, may not realise the financial strain that chronic disease can have on a family. With a loss of income, when someone has to stop working, the burden of providing for the family is left solely on the shoulders of the healthy spouse. As if this is not enough, the problem is compounded by unforeseen additional expenses such as the many unpaid days off work that the employed spouse might take for trips to the hospital or surgery which require their presence. In addition the petrol costs, parking fees, a taxi now and then – all keep mounting up. Occasionally special equipment has to be purchased, and in our case, unable to find a disabled friendly home we have to build a house especially designed to suit my needs. This endeavour brings with it not only a huge financial burden but taxing emotional anxiety, putting great tension into an already difficult situation. Non slip tiles for the bathroom are a necessity, and are far more expensive than regular flooring. Also bars to hold onto need to be purchased and installed for safety in the bathroom. Flower beds in the garden raised to wheelchair height, add additional costs to build, using yet more materials. The list goes on and on, and money flows out of our bank account as if it's water running down hill at great speed. One receives no help financially, or otherwise, and all these extra expenditures that have been going on for years take their toll. Anyone who is disabled, unless born with a silver spoon in their mouth, struggles to make ends meet. This is a topic most are ashamed, embarrassed and reluctant to admit or talk about. But it is a very real problem, and one that doesn't go away.

Tomorrow's the Day – April 10th 2012

Tomorrow is World Parkinson's Day which is intended to raise awareness of Parkinson's disease and to spur new research and advances in treatment. It should be a day for Parkinson's patients and their families to join forces, and bring society's attention to a disease that is unfortunately growing in numbers yearly of patients diagnosed. Millions of people around the world struggle with this disease and are desperately waiting for a cure to be found. I am in the unusual position of having two incurable diseases, Gaucher and Parkinson, and regret that a cure for both may be some way off yet. In the meantime I am determined to remain hopeful and in good spirits, doing the best I can. The last poem in my book begins with these lines:

"Let me tell you, what I've planned for tomorrow,

What time I have left, won't be spent in sorrow,

I'll live life large as I can, the very best way,

Grab every moment, express joy each day."

Red Tulip Day – April 11th 2012

The 11th of April is World Awareness Day for Parkinson's disease and the red tulip, a cheery flower, is the international symbol for Parkinson's. There is a particular red tulip with white tips that was developed by a Dutch horticulturist who had Parkinson's and he named this lovely strain of tulip after James Parkinson, to commemorate Dr. James Parkinson's birthday (1755 – 1824), who first documented this disease in a medical paper he presented. So please join me today in acknowledging World Parkinson's Day, by taking a few minutes to leave a comment on this blog entry (anonymously if you wish) showing your support. Photo: courtesy of MattJP.

Body Image - April 12th 2012

The perception we have of ourselves is often quite different from what other people see. I once read that there are three perspectives:

1. What we think we look like.

2. What other people think we look like.

3. And what we really look like.

When people pass me in the street, or spot me in a café or shop, what do they actually see? If I'm sitting at a café and having a relatively good day, the medications keeping my tremors to a minimum, glancing at me you'd think there's nothing wrong. But as soon as I get up out of my seat, it is clearly apparent to all that I am disabled, and with crutch in hand, there is no doubt. I may shuffle and move extremely slowly, stepping with care, shoulders hunched and the unmistakable shaking all give me away! However despite what you may see on the exterior, inside I am still very much ME, which probably goes unnoticed. I am young at heart, vibrant, with a dry sense of humour, positive and a bit of a chatter box. But these character traits are not seen or perceived when someone who does not know me, making hasty observations, reveals a completely different perspective. Catching a glimpse of myself in the reflection of a shop window, I can see how people that don't know me can easily make the wrong assumption. A reporter asked me about the photograph that appears on the back cover of my book, for I look healthy, smiling and having fun whilst steering a boat. I told the reporter that this picture was a fluke; it happened to capture my essence somehow and shows how I feel inside. I have to admit that I am not steering the boat at all, I am merely posing by the helm. So you see how a picture can be misleading – how body image can send a positive or negative message.

Early Diagnosis \- April 15th 2012

Correct and early diagnosis is very important, not only with Parkinson's, but any disease. Often initial signs of Parkinson are very vague, few and seem of little importance. If you are aware of your body and know instinctively that something is wrong, don't waste precious time, and do not be put off by a reluctant doctor. I was fortunate to have been diagnosed very early on, partially due to the fact that there are several family members with both Gaucher disease and Parkinson's. Although Parkinson's is not necessarily hereditary, in our family, there is a distinct link. Receiving such a quick diagnosis, I was able to start taking Rasagiline early on, and although I have no way of determining if I would be the same or worse today, and there are many contributing factors to take into consideration, I feel sure that early treatment has helped significantly. (I am not a doctor, merely a patient telling my own personal story.) Listen to your body, if you suspect you have Parkinson's make sure you see a neurologist, and get a second opinion if you are not satisfied. You have to take care of YOU – for no one else will do it for you!

101 Uses of an i.v Stand - April 16th 2012

Having treatment at home for Gaucher disease, I require my own i.v stand on wheels, which generally one sees in hospitals. Over the years we've found this stand to be a very versatile adjustable piece of equipment, for which I have discovered many different inventive uses when not performing its appropriate task. Apart from its intended purpose of holding the Voluset containing the medication and saline bag as they slowly drip their way into my veins, we have found a number of creative functions for this marvellous piece of equipment. When my daughter does the ironing, the stand is perfect for holding the shirts on their hangers next to the ironing board, and then easily wheeled into the bedroom where the shirts are put away. On a wet cold day, you'd be surprised how many items of damp laundry one can hang on an i.v stand next to the heater. With a little ingenuity and rotation from time to time, it makes the perfect clothes dryer. We once had a fun party the theme of which was 'The Adams Family'. Once again this stand played a part as we covered it in a white sheet adding two huge black eyes transforming it into a friendly ghost which hauntingly stood in the corner for the evening. My stand caused great amusement to a friend of mine some years ago, when she came to visit as I was in the midst of piecing a quilt together, using a sewing machine. Next to the sewing machine was my faithful and versatile stand holding all the brightly coloured strips of cotton fabric by clothes pegs, waiting to be sewed into blocks, which eventually became a beautiful quilt. I may not have 101 things yet that one can do with i.v stand, but give me a little time, and I'm sure I'll come up with some more!

You made my day! – 17th April 2012

I received the most beautiful e-mail yesterday from a lady whose mother has Parkinson's. I was very touched and moved by her heart-warming words, which let me know each day as I sit here writing to the world, not knowing who is reading what I write, that someone somewhere knows exactly what I am going through. Only a fellow Parkinson sufferer can truly understand what it is like to live each day with this terrible debilitating disease that robs us of our dignity and pride. There are millions of Parkinson's sufferers throughout the world, and we are united in our daily struggles and our deepest wishes that a cure be found quickly. I have been given the opportunity of helping others through my writing, but strangely, like a boomerang, I often receive in return support and comfort from complete strangers, who are part of the "Worldwide Parkinson Family" we find ourselves part of. I wish you all well and thanks in particular to a lady for taking the time to write to me – you made my day!

Getting off the fast track - 18th April 2012

Often we our caught up on the fast track of life; hurtling through weeks, months and years at an alarming speed. Busy with work, travelling, family, friends and all that today's hi-tech modern world has to offer, sometimes we find ourselves wishing for things to slow down a little, returning to a pace of life where the pressures were less, demands were fewer, there was always tomorrow and no deadlines to frantically meet. One of the things I have found about having Parkinson's is, that suddenly I am forced off the fast track, no longer able to keep up, and now amble through life in the slow lane. It has its distinct advantages, but now and then I forget I am no longer able to do things quickly and that although my spirit is willing, my body doesn't want to know. It takes me twice as long to do what I used to, and often find I can't manage at all, but there are many pluses too, so I concentrate on the positive aspects, looking for the silver lining in everything. My pace of life in the slow lane is much changed from before Parkinson's rudely and uninvited decided to turn my world upside down, ultimately slowing everything down to a snail's pace. I can highly recommend travelling in the slow lane, but I very much hope that you can make this transition in good health and without the forceful hand of Parkinson's disease.
What is loss? - April 19th 2012

Having to deal with loss is a painful process, and one that cannot be hurried. Each person is individual, and every situation is different. We all have ways of coping, but sadly there are those who do not have the necessary tools and like an ostrich spend a lifetime with their heads buried in the sand. Facing loss straight on is not pleasant or easy, taking great strength and courage to move on with one's life, despite the sad situation. One normally associates "loss" with someone dear passing away. Although without doubt, death is by far the worst form of "loss", it is not the only one. In the Oxford Dictionary, the definition of "loss" is: the fact or process of losing something or someone. The loss I speak of today is the loss of dignity, independence, and the life one had hoped for. When diagnosed with Parkinson's, I was well aware of what lay ahead, the various stages which await me, I take pains to be well versed with the disease and the symptoms I encounter; one could hardly say I'm in denial. Yet each time I am faced with another loss, I have to muster up every ounce of emotional energy to accept the ever changing limitations of my situation. This "loss" naturally affects my husband and daughter, as although I am thankfully very much still here, they have lost parts of the former wife and mother who would once walk the dog for hours, be as quick as a flash in the kitchen, full of energy and vigour, like a dynamic energiser bunny I only knew one speed, and that was "fast"!

Loss cont. – April 20th 2012

I spoke yesterday about "loss", and wanted to expand a little after speaking to a fellow sufferer. The "loss" encountered when living with a degenerative disease, is the continual decline; slowly but surely life changes, unable to do the things one would like to or used to do. I loved being with people and going out, but now have little energy, am tired beyond exhaustion by early evening, and although would very much like to accept the invitations I receive, I know I will not make it through the night. The loss of dexterity is extremely frustrating, and fighting with zips, buttons is no joke. Sometimes the smallest of chores in the home is so exasperating; pathetically I am brought to tears. Losing the ability to walk far is upsetting to put it mildly (a British understatement if ever there was one!). I used to walk for hours with our dog in the forest and this simple pleasure that I loved, has been stolen by Parkinson's, who like a thief just keeps coming back to see what else can be taken from me. Unable to drive has become my biggest "loss" to date, affecting my daily life in an enormous way, rendering me housebound. To lose dignity, the ability to take care of one's self and be self-reliant is what most people fear the most. To save my sanity, I accept (unwillingly) these changes and try to get on with my life, doing the best I can to enjoy my wonderful family and friends along with the things I can still do. Despite everything, I still smile and laugh, and know for sure that I don't have to look very far to find someone unfortunately worse off than myself. A published author paid me a huge compliment the other day and told me "you are a natural writer", and so I will continue to write the truth in an honest fashion about my experiences and thoughts, straight from my heart to yours.

Is Parkinson's hereditary? – April 22nd 2012

I have been asked many times if Parkinson's is hereditary. I am not a doctor, simply a woman suffering from Gaucher and Parkinson's disease, who is a writer, sharing my thoughts with you through this blog. As far as I can ascertain, there is no clear evidence and the jury is still out as to whether Parkinson's is hereditary or not. My particular case is an unusual one, having other immediate family with Parkinson's; an important fact to remember is we also suffer from Gaucher disease and a connection between these two diseases has been established. Although my family history seems to strongly suggest that in my specific case PD is probably hereditary, I do not want to give a false impression that Parkinson's in general is inherited. I know of many people who have PD and no one else appears to be affected at all in their family. Until there is indisputable confirmation proving or disproving, no one can give a precise answer to this question that so many are asking. I'm sorry, but for now there is no conclusive answer.

First signs – April 23rd 2011

The first signs of Parkinson's are sometimes vague and subtle, often dismissed or lead to an incorrect diagnosis. Every patient is different, and no two people will experience exactly the same symptoms, therefore the signs can only be an indication. However, if someone has a number of, or all the following symptoms, medical advice should be sought. Generally the first signs are a slight tremor or shaking, possibly in the legs when you are sitting down, which was in fact the first symptom that I felt, but just on the left side. A change of handwriting is also a sign that something is wrong. Losing one's sense of smell is yet another early symptom, but as this disappeared gradually, I didn't notice until my sense of smell was completely gone. Trouble sleeping; tossing and turning, disturbed nights is common to Parkinson's patients. Stiffness in arms and legs, in particular when walking, if your arms do not swing, but stay rigid by your side, this is yet another sign. My husband noticed early on that my left arm did not move when I walked. Speaking, one's voice can sound soft or horse almost as if someone has turned the 'volume' down. I used to have a loud voice and don't stop talking, so when my voice goes from time to time, this is one of the few symptoms that my household is quite happy about; for occasionally they now get some peace and quiet! Not standing up straight and having slightly hunched shoulders is another early sign. There are no standard or precise indicators for Parkinson's, as every person is individual so these first signs are only a rough guide. Someone may experience just a couple of the symptoms whilst another might encounter them all. If you are at all worried you may have Parkinson's I would highly advise seeking proper professional advice, preferably from a neurologist, who is experienced and capable of diagnosing neurological problems.

Family relationships – April 24th 2012

How Parkinson's or any disease affects one's family is a complex issue which I have only touched briefly on so far. The emotional and physical toll, not to mention logistics and financial strains that weigh heavy on a family whilst taking care of someone with a degenerative disease are not to be taken lightly. Many spouses struggle to such a degree that they can no longer continue, and sad though it may be, occasionally these cases end in separation and divorce. I apologise to any male reader as I do not intend to sound biased or offend, but statistics clearly show that female caregivers (probably due to our inherent nurturing natures as mothers) generally stay put and run the course. The numbers of male caregivers show that men unfortunately are often less able to bear the intense heavy burden and ultimately for self-preservation, bale. These are merely statistics, but I'm incredibly lucky and blessed to have a wonderful husband who is patient and understanding, steadfast by my side he supports me through the good and bad days. Despite staying together through thick and thin, both of us having positive cheerful natures (a great advantage), the worry of what lays ahead, and the strain of the days that are not so good, do effect this household. I would be a liar it I were to tell you differently. When I try to imagine how my husband feels when he sees me in pain, and there is little he can do to alleviate my discomfort, or he hears me shuffling my feet from the other room, or dropping yet another drinking glass, the sound of breaking glass must shatter his dreams of the life he thought he would lead. We fall in love, marry and bring children into this world, without knowing or having any guarantee of what the future holds. If your love for each other is strong, it will endure anything that life throws your way, and sometimes even make you appreciate life and what you have in a deep and profound way. Stay tuned, for tomorrow I will continue with this wide-ranging topic.

Family relationships cont. – April 25th 2012

I reiterate I am not a doctor, simply a women suffering chronic disease sharing my thoughts and feelings with you through this blog. To continue with yesterday's topic, when a member of the family is chronically ill, much time, energy and thought focus on that individual. People are always so busy asking how I am; they may forget to ask how my husband is bearing up. Attention to other family members, in particular children, can sometimes unintentionally wane. Children may be old enough to fully understand and appreciate these unfortunate circumstances, but it does not detract from the fact that their sick parent often takes priority. Limitations on family trips and outings, even simple visits to the doctor or shopping (groceries or other items) all have to be adjusted accordingly taking into consideration my condition, and what should be a regular excursion often turns into a military style operation. Every facet of daily life has to be thought through, and this continuous endeavour can be exhausting for all the family. My daughter copes admirably, and helps me without question or hesitation, but I'm sure there must be times; it would be a sweet reprieve for her, not always having to think about my needs first. Being honest with your family; keeping the lines of communication open, and upholding a pleasant atmosphere in the home are just a few ways which help improve a challenging scenario.

Barbeque etiquette – April 26th 2012

I think most of us enjoy barbeques, the smoky charcoal taste turning any simple piece of chicken or meat into a delicious mouth-watering feast. Sitting outside in the pretty garden, flowers blooming, the pleasant spring weather a delight; what could be nicer than sharing a leisurely meal with family and friends? You are probably wondering what on earth a barbeque has got to do with Parkinson's! Having difficulty with using cutlery, it is perfectly acceptable to use one's hands at a barbeque. Those difficult chicken wings, meat on skewers or steaks which require an amount of dexterity in one's fingers when normally eaten with a knife and fork, one is suddenly afforded the luxury of barbeque etiquette and able to use one's hands. Everyone at the table has sticky BBQ sauce on their fingers and suddenly I don't feel like a fool – for a change we're all equal. What a delight to feel so at ease during a meal. I can see we'll be doing a whole lot more barbequing when entertaining from now on.

Good morning - April 27th 2012

Waking in the morning, it's almost as if my body has lain still in one position the entire night and frozen. The stiffness and rigidity with which my body is encapsulated is incredibly painful rendering it difficult for me to move let alone actually get out of bed. I presume this is how most Parkinson's patients wake up in the morning. This is how I start my day, and no doubt millions of others just like me. This may sound strange, but I have it on good authority that silk sheets make it easier to roll over and move in bed. Several people with Parkinson's have told me this, so I shall give it a try. It's amazing how just a shortage of a chemical in the brain, is responsible for changing one's life so drastically, the repercussions of which fan out to the rest of the family and friends who are stoic enough to stick around.

Curiosity killed the cat! – April 29th 2012

Sitting on a bench looking out over the sea, at a distance some women were having a rather heated discussion. Although I couldn't actually hear what they were saying, from the violent hand gesticulations and enraged looks, they were both upset and the nature of their conversation must have been serious and probably one best not discussed in public. Curiosity getting the better of me, I put on my glasses, for although I couldn't hear what they were saying, I know how to lip read! Yes, my secret is out, I can lip read. My mother taught me many years ago, and it has been a very useful tool. Now understanding what they were talking about, I was in a quandary for I knew the answer to their question, and yet how could I walk up to complete strangers, interrupt their private conversation with the solution, showing I had been listening (or in my case reading their lips). I was in a similar situation some years ago when having a scan done of my hip, and the doctor and scanning technician were engrossed in a conversation about me behind a glass window. I lay there watching them, and although couldn't hear a thing through the sound proof glass, I could read their lips very well. The technician was asking the doctor how I could lay there without screaming, as the scan showed clearly an AVN (Avascular necrosis of the bone) that was severe, he knew I had to be in unbearable pain. When the technician came into the room to remove me from the scanning machine, he was so sympathetic and gentle, I didn't have the nerve to tell him I was on morphine and that was what was keeping me from screaming, not to mention my British stoic upbringing of not making a fuss. Sometimes, its best just to keep one's mouth shut!

Neurological Associates - 30th April 2012

I was surprised and delighted to learn that an article appeared about me recently in the Neurological Associates of West Los Angeles. Word of my little book with its big message seems to be reaching far and wide. I will continue to spread my message of hope and positive thinking, striving to bring greater awareness of this debilitating disease, and shall keep up the fight. Education and knowledge are powerful tools, and through my book and this blog I am reaching many people around the world. Fellow sufferers and caregivers are relating to what I write, and people in the medical profession appear to be intrigued at my stark honesty and how I tell it just as it is – not sugar coated – but "raw" and truthful. Everything I write is from personal experience, so this blog is my own Parkinson's journey.

Wearing a mask – May 1st 2012

A friend commented on "wearing a mask" to cover one's pain or discomfort when in company, and thinking about it later that evening, I have to agree with her, that we all tend to "wear a mask" unconsciously at some point for various reasons. It is a form of self-preservation and a coping mechanism that I acquired when I was a young child. I remember all too well at the age of 11, suffering an acute bone crises (infarction of the bone due to Gaucher disease) and was hospitalised for two weeks. In those days, there was no treatment, and the doctors knew little about Gaucher and unfortunately I suffered agonising pain, not through lack of care on the hospital's part, but simply down to a lack of knowledge. This is one of the drawbacks of having a rare disease; doctors knew almost nothing about Gaucher back then. Suffering from a rare disease makes life a little more difficult, and being special, may not feel great from the patient's perspective, but in the eyes of the medical field, you are viewed as a challenge, an extraordinary case that they don't come across every day, an interesting patient that spices up their day, and makes them put on their thinking caps. Thank goodness times have changed and things are very different for Gaucher patients today. I guess I'm someone who doesn't do things by halves – when I do something I do it really well; having a very rare disease (Gaucher) and in addition a common disease (Parkinson's), making my life interesting to say the least!

Best Prognosis – May 2nd 2012

Early diagnosis is vital with any disease, for the best prognosis. Treating a patient as early as possible can prevent permanent damage in some diseases; therefore time is of the essence. However many diseases have subtle and confusing symptoms often mistaken for other diseases and patients are misdiagnosed. Until a final diagnosis is made, the patient can experience much anguish and worry spanning months or even years. Not knowing what's wrong, is probably the hardest part of being ill. Once a proper diagnosis has been ascertained, the patient can then begin the journey of acceptance, becoming informed and acquainted with symptoms and options regarding available medications. It is the unknown that is frightening and disconcerting.

Rare disease – May 3rd 2012

Despite Parkinson's not having a simple blood test to make a clear diagnosis, the signs and symptoms are very well known and common to most doctors. Rare diseases by definition are not observed on a frequent basis, and a general practitioner (family doctor) cannot be expected to know every rare disease known to mankind. He may never have heard of a particular rare disease, let alone actually come across a patient suffering from one. How would he know where to start, what to look for, or which specialist he should send his puzzling patient to? It is unreasonable and unrealistic to imagine otherwise. When student doctors learn about Gaucher disease in medical school, there is simply one paragraph giving a rough outline of the disease, which is probably the only information deemed necessary regarding this particular rare disease. One day, the doctor may happen to come across a Gaucher patient and more than likely the only one he'll ever meet and suddenly that one paragraph he learnt in medical school will suddenly take on great importance.

Student doctors – May 4th 2012

I was contacted by a doctor who knows me, asking if I'd be willing to participate in a programme for student doctors to familiarize themselves with talking to chronic patients. I naturally said "yes" and talked for two hours answering their questions, meeting them several times and finally they accompanied me on a regular hospital visit to see what a chronic patient goes through. The hospital staff had been told in advance of their attendance, and every nurse, technician and doctor I saw that day took time explaining to the student doctors about each test, why and what they were looking for. It was an extremely long and tiring day, but the student doctors learnt a great deal from this experience. A copy of my book was given to them to read completing the picture of a patient with a rare chronic disease. This programme has been extremely successful and seen as an important additional learning exercise for new student doctors, which they hope will become a permanent part of the syllabus.

To a special lady - May 6th 2012

Since writing my book and daily blogging, I have had the honour to come into contact with some wonderful amazing people. I wrote this poem recently and dedicate it to a brave lady I have never met.

Wish I could bottle what I feel inside,

So you could be free, not have to hide.

Stay your wonderful self, be brave, let all see,

You have Parkinson's, the same as me!

No one can help you, unless they're informed,

Knowledge and awareness, ignorance reformed.

Open your heart, tell those who care,

Now enlightened, life's easier to bear.

Knowing the truth, they'll fully understand.

Caring souls will want to lend a hand,

I'll say it again, in case you didn't hear,

Don't hide the truth, don't live in fear.

Those who love you, won't turn or run away,

But stay by your side, support you each day.

(Written by Elaine Benton 2012©)

No room for a wheelchair - May 7th 2012

We discovered the other day, much to our surprise that a standard wheelchair will not fit easily into the boot (in USA I believe you call it a "trunk") of many regular sized cars. Realising this deficiency in the manufacturer's design and the customer's requirements and needs, we were astonished, and hence started our own personal survey. We took my wheelchair along to a car showroom, and tried putting it in the boot of several cars on show. To the amazement of the sales lady and us, only the very large cars had a boot big enough to accommodate my wheelchair. When reading the highly glossed shiny prospect of a new car, one's mind boggles at all the intricate details and information they give the potential customer, but nowhere does it state if a wheelchair will fit into the boot! We have a relatively small car, and yet my wheelchair fits easily and comfortably into the boot, leaving the back seat free for passengers. Many cars we saw were larger than our car, and yet poorly designed as far as the boot is concerned, and no matter how we tried, my wheelchair would not go in. Maybe the English popular television programme "Top Gear" would like to pick up on this topic and bring it to the manufacturer's attention, where Jeremy Clarkson I'm sure would do a grand job!

Internal tremors - May 8th 2012

People associate Parkinson's mostly with shaking and tremors which are clearly noticeable, but there are also internal tremors which are not visible to anyone else but are highly unpleasant. These tremors literally drive me crazy, and when people say to me "you look so well, I can't see you shaking" they have no idea what is really going on at all. The tremors are exacerbated by any stress or tension, and seem to be inside my arms, legs and also in my chest. Many symptoms associated with Parkinson's are not visible, so it is incredibly hard to judge how much someone is really suffering. This is also why it is so important to tell your doctor everything you are experiencing, for again it is not plain to the naked eye what is really going on. The medications I am on seem to be taking care of the external tremors pretty well, but the internal tremors are a daily torture and reign supreme!

Hot & Cold Flashes - May 9th 2012

One normally associates hot and cold flashes with the menopause, but this temperature sensitivity can be another symptom some Parkinson's patients experience. Of course unlike menopausal flashes that will hopefully diminish over a period of time, Parkinson's flashes appear to stick around for good. When I first experienced these irritating hot and cold flashes, I put it down to menopause, but after speaking to several patients who encounter the same thing, I see I'm not alone. A healthy woman experiencing a hot flash can at least whip off a layer of clothing with ease, but when you have Parkinson's, removing one's clothing quickly is not always possible. I frantically struggle and wriggle trying to extricate myself, sometimes in desperation my clothes end in a frenzied tangled mess requiring assistance. It's as if my body temperature gauge has gone awry. I tend to now wear layers, so that clothing can be removed or put back on again with relative ease.

Suggested foods for entertaining - May 10th 2012

One of the most difficult situations causing great embarrassment, is being at a function or someone's house, and refusing food that is offered, simply because it will prove too difficult to cut or eat in a dignified manner. Maybe people could be a little more aware of what foods are difficult to eat, and ensure there are some dishes that are 'Parkinson's friendly'! Olives, small gherkins and bite size pieces of cheese with pineapple on tooth picks are easy to pop straight in one's mouth without the use of a fork. Anything that is spread on a cracker, if the cracker requires more than one bite, proves difficult to eat, and especially toppings precariously piled onto slices of crostini – these are disasters just waiting to happen. There is an old traditional English dish called Kedgeree, which is a particular favourite of mine, and this makes for a tasty meal that is easy to eat and mishap-free! A delicious risotto is also easy to eat with a fork or spoon in one hand; the sticky rice holding together the ingredients. Mashed potato, wonderful on one's plate; can be used as a form of 'food glue' sticking other foods together ensuring no dropping. Peas, spaghetti any steak on a bone should all be avoided like the plague! All it takes is a little imagination and trying to put yourself in 'Parkinson's shoes'.

A test of friendship - May 11th 2012

I spoke of family relationships in previous blog entries, but often friends have a hard time dealing with Parkinson's too, even though they don't liver under the same roof. I am constantly astonished by some people who have no tolerance or empathy, and would rather cut off relations than deal with (in their eyes) an unpleasant situation. This shows poor character indeed, for none of us know what the future holds in store, and anyone can be struck down with ill health. Unfortunately with Parkinson's, and let's be brutally honest here, the situation isn't going to improve, unless the miracle we've all been waiting for suddenly materialises. Parkinson's being a degenerative disease, makes it very hard for family and friends to see the changes that slowly take place transforming someone they loved dearly into a facade of the person they once knew. Some friends stay committed, but others make a dive for the door and keep running, not even looking back to see if they have hurt or insulted anyone's feelings. I wish them well, and hope they never know what it is to lose one's good health.

Special Thanks \- May 13th 2012

I wanted to say a special "thank you" to a particular lady for it is an honour and privilege to have her in my life. Getting to know someone properly over the years, is much like peeling an onion with many layers, as each one is removed, yet another facet of character and personality is revealed. I continue to learn and be amazed at the generosity of heart, understanding and supportive spirit of a woman I hold much admiration for, and who is very dear to me. As we all grow older, and hopefully a little wiser, it has become very clear to me who I can count on and who I truly enjoy spending time with. I have little patience or time for superficial friends, and would rather be in the company of someone who has depth, and yes layers – like an onion! Having poor health one is not afforded the luxury of wasting precious energy and time, therefore I highly recommend concentrating on doing things you enjoy that are good for you, being in positive and uplifting company, and making the most out of each day. Cherish and spend time with those you love.

Parkinson's Poetry spreads the word - May 14th 2012

Getting my message out and spreading the word takes many hours painstakingly working on the computer through the Internet, reaching those who need support whether they be fellow sufferers or caregivers. Slowly the public are becoming more aware that Parkinson's is not a disease that only affects the elderly, but can strike the younger generation too. I was just 44 when diagnosed, and shockingly have since come across many people diagnosed much younger than this. The need for education and further awareness is paramount. Parkinson's has attacked me, which I take personally and will fight tooth and nail. I will not give in. I will not let Parkinson's ruin my life and that of my wonderful family. I was thrilled that my book and blog site now appear on "New Book Blogger" Website along with "A Poet's Word" Website. Help me in my battle by spreading the word. Pass on these links to anyone who has Parkinson's or is a caregiver. Together we are millions of people worldwide, and strength in numbers we can fight this lousy disease, joining forces with doctors, researchers, scientists, pharmaceutical companies, sufferers and caregivers. I have faith we will win this battle.

Cooking up a storm - May 15th 2012

Due to Parkinson's over the last number of years, I have slowly lost the ability to do many of the things I once took for granted. One of my great pleasures in life is cooking, and fortunately I can still manage to cook up a storm. It may take me twice as long; breaking the occasional dish or glass along the way, dropping and spilling food on the floor which delights the dog no end, not being able to smell anymore I have to continually rely on my kitchen timer, and am exhausted beyond words after a session in the kitchen. However, the immense pleasure I get from creating delicious food, baking cakes that even the staunchest of dieters will break and fold to have a slice, is well worth the time and effort. This is what family and friends often do not understand when I invite them over to our place, their reaction being: "it's too much work for you". I realise this comes from a place of love and concern, and I appreciate the consideration. One of my favourite films is "Julie and Julia" with Amy Adams and Meryl Streep and the day I can no longer cook will be a sad day indeed. Doing something that you truly enjoy, are passionate about and hopefully good at, makes you feel good. If you can manage to do even just one thing a day that brings a smile to your face, contentment and joy – go for it! Your 'thing' may not be cooking up a storm, but I'm sure you'll come up with something that will leave you feeling pleasurably satisfied.

Parkinson's 'party' at night! – May 16th 2012

Parkinson's patients often can't sleep at night, and laying here staring at the ceiling, trying not to wake my husband, is difficult not to mention intensely boring. Why not make the most of that time? Instead of lying awake doing nothing, try doing something; preferably that does not disturb everyone in your household! I have found this time to be my most creative, and this is when I write. But if writing is not your forte, find something that interests you. Catching up on your e-mail, playing brain challenging games on a computer can keep one's mind agile, find a chat room for Parkinson's patients and you'll always catch someone in the world who is awake in the middle of the night. Many people experience that their creative leanings are heightened and a need for expression is strengthened. This is a great opportunity to maybe start painting, tapestry (with large holes in the fabric), or any craft project that helps with dexterity keeping your fingers nimble. Don't waste this precious time feeling cheated out of a good night's sleep or feeling sorry for yourself, look at it as a gift of extra time you've been given to accomplish things.

Choking - May 17th 2012

Choking on food or on one's own saliva is a common symptom of Parkinson's. Having difficulty in swallowing is very unpleasant, and although naturally the immediate reaction is panic, this is the worst thing to do. When unable to swallow, I have learnt to throw myself into "relaxation mode" and as soon as I'm calm, I am able to swallow again. Sucking on boiled sweets (hard candy) helps considerably when having difficulty in swallowing, so keeping a tin of these handy is a good idea. I have a nasty sore throat at the moment and occasional bouts of frightful coughing rendering me breathless. Last night I was coughing so badly; the muscles in my throat swollen, I suddenly found myself gasping for air. What started as a simple coughing fit, quickly turned into a frightening situation of not being able to breathe, and despite my resolve I started to panic, which of course made matters worse! My husband, who has taken first aid courses, quickly stepped in, and thankfully due to his clear level headed quick response, he managed to calm me down. Gasping for air, but finally able to breathe again, thanks to my own personal superman, my hero who doesn't need to quickly change his clothes in a phone booth, I am sitting here writing my blog as usual this morning. In our household, there is most definitely no shortage of excitement!

One Day at a Time - May 18th 2012

I am sitting here this morning with my guest blogger for today, the amazing Jill Sadowsky; author of "David's Story". Whenever we get together to brainstorm, inspiration extraordinarily sparks our imaginations and we become a power house of new ideas, furthering our respective campaigns offering support and bringing greater awareness. I will now hand over the keyboard to Jill:

Being in contact with an author who is working towards a worthy cause, helps keep things in perspective. My husband used humour whenever he could to defuse potentially explosive situations and in general he found that humour helped him remain positive.

We attended a support group: **each one of us mourned a young person whose life had changed; shock, loss, grief, fear, confusion, ambivalence, guilt, helplessness, despair, sadness and hopelessness were common reactions. I realized that most problems in coping with these feelings came from doing so without the added comfort of extended family and close friends. But, how could they possibly grasp the enormity of the problem if it had taken us so long to understand?**

**I asked the group; "How can I avoid regretting hopes and dreams that have become so unrealistic?"**

**Someone replied; "Don't wait for your child to fulfill your former expectations. Alter them. Learn to forge new dreams. Take one day at a time."**

**Of all the advice I ever received; take one day at a time proved to be the most helpful.**

Stick to good news! - May 20th 2012

Have you ever noticed how bad news always features first on television or radio before any good news? Bad news travels fast (so they say), and we've all heard of the saying "no news is good news"! Wouldn't it be a refreshing a change, if good news were reported in equal amounts to the bad? I presume good news is not sensational captivating the audience whilst stopping to gasp at the headlines, arousing gossip and speculation. Where are all the good and wonderful stories out there, about amazing people doing incredible things, uplifting and inspiring us all to be better, making this world a far better place? Since beginning to write my blog, I have had the good fortune to come into contact with many people from around the globe, each one with their own courageous heart-warming story to tell. I have experienced first-hand the best of humanity which restores my faith in mankind. Being chronically ill, changes one's perception of life, and the small things that would have once driven me mad, are of little importance today. Knowing in your heart what really counts; acknowledging and accepting, where to focus ones energy, are one of the important lessons that ill health has taught me. I always look for the silver lining no matter how dim the situation and give people the benefit of the doubt. My glass is always half full, and every day I count my blessings. I always endeavour to look on the bright side of life.

Patience for Parkinson's! - May 21st 2012

There are not too many people, who would have the patience to take me clothes shopping, but a girlfriend of mine, who is a champion of shoppers, along with my daughter, drove me to a local mall. They took turns pushing my wheelchair as we went in and out of endless shops, requiring some careful steering manoeuvring in-between narrow aisles. My daughter and friend knowing what I was looking for searched the rails tirelessly for something suitable. Trying on dresses was a difficult and exhausting long process for me, requiring their assistance in the changing rooms. Stopping for some light refreshments, my friend didn't bat an eye lid as I dropped cake on my lap, leaving a trail of crumbs on the floor around me. After a couple of hours, all feeling tired, we almost passed by an unlikely looking department store. Not wanting to leave any stone unturned, my friend determined we wouldn't leave the mall until our mission accomplished, thankfully ushered us in, and lo and behold, we found the perfect dress. It takes a special woman who is a good friend, to be resolute in helping me on what was not a simple task. Shopping for clothes when disabled, is far from easy, especially when buying an elegant dress that is flattering and classic. Someone who takes the time and patience not to mention stamina is a true friend indeed. I was so grateful for the help, as I would not have managed this alone. Thank you "M" for yesterday!

Mirror mirror on the wall - May 22nd 2012

Looking in the mirror, I wonder who on earth is staring back at me. I hardly recognise myself anymore. Although I am fundamentally the same person I always was, my inner core remaining intact, the outer façade barely resembles the carefree young, laughing and smiling woman I once was. Smiling to have my picture taken the other day, I could feel my face distorting, and try as I might, my natural smile and shining eyes as if suddenly camera shy refused to co-operate. Thanks to today's digital cameras, no film was wasted, but many shots had to be taken until finally a decent picture was achieved, which I'm sure was fluke rather than perseverance. I don't mind the crow's feet around my eyes which show I've laughed and had fun, or the wrinkles indicating I am old enough to have a little wisdom under my belt, nor the grey hairs that continue to appear adorning my head confirming I've lived life to the full and have an interesting story to tell. What does bother me is the thought of losing my smile, my facial expressions, and the twinkle in my eyes. I know I will still be "me" inside even when these are gone, but dear family and friends, I'm sure will notice these missing elements, and I only hope when that day comes, they realise I'm still very much here.

The best medicine is 'good news'! - May 23rd 2012

I have some exciting good news to share with you! I wrote an Abstract for The First International Congress on "Narrative Medicine and Rare Diseases", which will be attended by doctors, people working in the medical field and patients and their families suffering from rare diseases. After submitting my abstract entitled "Writing as Therapy", I waited for a reply. Each day I would eagerly check my e-mail in-box and finally, with great delight and excitement, received confirmation that my Abstract had been accepted. I am being asked to give an oral presentation, in Rome/Italy on June 4th, 2012. As you can imagine, I am thrilled to have my Abstract accepted and to be given the wonderful opportunity of presenting it. It was May 2011 that I started writing the poems for my book "Parkinson's, shaken, not stirred", and when I think of all that has happened during this past year, I find it difficult to take in. Not in my wildest dreams would I have imagined that a few lines of poetry that came into my mind one night would lead to all this. Despite ill health, life can be an amazing journey.

In good hands - May 24th 2012

Being chronically ill is not a matter of simply being diagnosed and treated by a doctor. There is so much more to treating a patient, which can ultimately lessen the severity of the symptoms, and in some cases, slow the progression of the disease itself, ensuring a better quality of life. If a patient feels he/she is understood by the doctor and respective family and friends, this gives valuable beneficial support and empathy to the person who is ill. Like the reflection of the sun on the ocean, it radiates back, so understanding fully what someone is going through (whatever the disease) and making allowances, being tolerant and identifying with the person's symptoms is equally important as diagnosis and medication. I am extremely fortunate to be under the care of doctors who understand the importance of narrative medicine, which makes me feel I am in good hands. I value and trust their opinions, and they in return listen to what I report on my visits and pay attention to family medical history and detail. Treating a patient as a person, and not merely as an interesting medical case, encourages the patient to open up, and valuable dialogue between doctor and patient can transpire. When I walk into a doctor's office, the doctor always looks up as I enter, eye to eye contact is made, my first name is applied, and an interest with compassion is conveyed. This is the sign of a good doctor.

Don't forget to say 'thank you' - May 25th 2012

After a student has studied seven years, often working several jobs on the side to make ends meet, one has to be highly motivated and dedicated to make it through medical school. Finally choosing an area of medicine they want to specialise in, a career in the medical field begins. I am full of admiration for these enthusiastic young student doctors. I think that being a doctor or nurse is one of the hardest jobs, often low salaries, long unsociable hours and receiving little thanks or appreciation in return. In a hospital ward, the staff are under constant pressure, emergency cases understandably taking precedence and suddenly throwing out all schedules, one needs to stay patient and calm, and take into consideration the incredible daily logistics and organisation that ensure the smooth running of any hospital ward. In specific cases a small number of patients might have genuine reason to lodge complaints, other patients just "like" complaining and making a fuss, some would say "thank you" but simply forget to do so. Fortunately there are patients like myself who appreciate the demanding work doctors and nurses tirelessly do, making sure to show appreciation and saying "thank you" when appropriate. Too many complaints and not enough "thank you's" can lower the morale of medical staff. I have been hospitalised many times and cannot recall the need to complain. The treatment I have received has been exemplary and I thank all who have cared for me over the years during hospitalisation.

Narrative Medicine - May 28th 2012

Several people have asked me what narrative medicine is. I am simply a patient and will try to explain as best I can:

A doctor who treats a patient's medical problems merely as a problem to be solved, without taking into account the specific emotional and psychological state, along with any relevant personal family history of the patient is doing only half a job.

Narrative medicine is the process of looking at the entire picture of those who are ill. Patients suffering disease need people around them who can fully comprehend and understand their disease, knowing the symptoms, side effects of treatments, the emotional ramifications that touch other members of the family, talking about long term prognosis, the worries and concerns any patient would have upon diagnosis, treating the patient as an individual person who has a name, and not merely an interesting case, supporting and accompanying the patient through their illness whilst also treating their medical problems.

If you would like to read what the expert Dr. John Launer has written on this subject, I'm sure you will find it interesting.

To speak or not to speak - May 29th 2012

I bumped into someone in a shop who I haven't seen in a while; hugging me warmly, she kissed my forehead, and asked in a lowered concerned voice, "why are you in a wheelchair?" I hesitated for a moment, not quite sure if to tell her the truth that I have Gaucher and Parkinson's, but decided it was too much information for an acquaintance to take in. I didn't have the emotional energy to start explaining my whole story to her, and then have to expend further more energy in comforting and reassuring her that I'm OK! It always makes me laugh, when I find myself consoling other people when they hear my story! This has happened before, and learning from experience, occasionally I find it better to tell a 'white lie', so sometimes it's just easier to say that my legs are not too good and there's too much walking for me in a mall. This may sound feeble, but it usually satisfies someone who doesn't really want to know and is merely making conversation is just an acquaintance or a person you are never going to meet again. I once made the mistake of telling a curious chatty shopkeeper who insisted on asking me what was wrong, and as soon as I mentioned Parkinson's (I didn't manage to tell him I had a rare chronic disease called Gaucher as well!) he then went on to lecture me about what to do and which doctor to see. Desperate to extricate myself from his well-meaning but misguided help, I couldn't leave the shop quick enough. The same applies when someone asks me "how are you?" I have to quickly surmise who really wants to know, and who is just being polite, preferring me to just say "fine thank you". I tell you, it's often hard work knowing when to speak or not!

Oral Presentation – May 30th 2012

Thank you everyone for your wonderful warm words of support and good wishes upon the exciting news of my Abstract being accepted by the First International Congress - Narrative Medicine and Rare Diseases. As you know I have been asked to give an oral presentation on 4th June 2012, which is a great honour and I am thrilled. The keynote speaker is Prof. Brian Hurwitz from the School of Arts & Humanities at King's College, in London and I look forward to meeting him. I will be the only patient representing Gaucher disease who is giving an oral presentation so feel it is an important opportunity to bring the care of chronic diseases to the forefront from the patient's point of view. Tomorrow we travel to Italy; our bags are packed and my presentation is ready. I have been given good advice from seasoned speakers and feel well prepared. I'm not looking forward to the journey, as like a bottle of good Merlot wine, I do not travel well. During the flight, I suffer from Gaucher bone pains due to the cabin pressure, and the Parkinson's makes it very difficult and uncomfortable to sit long in an airline seat. It usually takes me a full day to recover from a journey, but it's worth it. I wouldn't miss this opportunity for the world.

Travel with me \- May 31st 2012

If you've been following my blog you will have read that I wrote an Abstract entitled 'Writing as Therapy' that was accepted by The First International Congress on "Narrative Medicine and Rare Diseases", which will be attended by doctors, people working in the medical field and patients suffering from rare diseases along with their families. I was asked to give an oral presentation, and today my husband and I are off to Italy. I will continue to write my blog each day from Rome, so in a sense I will be taking you all with me, on this opportunity of a life time, where I'll be representing Gaucher disease. I seem to have two hats to wear: Gaucher disease a rare chronic genetic disease and Parkinson's a common degenerative disease. So read my blog tomorrow morning and you'll be with me in spirit in a wonderful country where the people are warm and hospitable; home of the Opera, the land of the original delicious Parmesan, pizza and pasta, and the many beautiful historical sites that maybe we'll get a glimpse of during our short stay. Today will be a long tiring day, and we've booked assistance at the airport, as we'll be taking my wheelchair with. So wish us Bon Voyage and I'll catch up with you tomorrow, once we arrive in Italy. Ciao!

We've arrived - June 1st 2012

Peering out of the plane window, I can see Italy below, mountain peaks reaching up to greet us. Tiny houses and roads started to appear; scattered hamlets, then larger towns coming into view. White fluffy clouds hung in mid-air; my ears began to pop as we began our descent. A patchwork of fields and crops varying in shades of greens adorn the countryside. Lower and lower, now able to actually see cars driving along roads, the roar of the engines increased as we slowly came in for a gentle landing arriving at Rome's airport. We arrived safe and sound in Italy. The flight was very good, and we arrived on time, being met by a charming Italian driver, who took us on a wonderful detour to our hotel, giving us a glimpse of a few magical historical sites that Italy holds in store. Here I sit writing to you from our hotel that is situated not far from where the Congress is being held. The architecture and buildings everywhere you turn have something of interest. Many streets are cobbled (and not suitable for a wheelchair) but beautiful and every little street holds a charm of its own. I can hardly believe that we are here. I love art and since a child have dreamt of seeing the Sistine Chapel, so my darling husband, who is intent on making as many of my dreams come true as he can manage, has arranged a tour this morning. There is special access and lifts available to those in wheelchairs, and booking in advance to alleviate waiting in line, there shouldn't be a problem. I shall leave you here, and catch up with you later.

Make a wish - June 2nd 2012

Yesterday we went to see the Sistine Chapel. Booking ahead of time on-line through the Internet to avoid having to wait to get in, we were very impressed by how wheelchair friendly they had managed to make such old buildings. We did not do the entire tour, as this would have been too much for me, so went in by ourselves and saw what we wanted to. The staff were very conscious of wheelchair assistance, and were extremely helpful. No photos or footage seen on television can do justice to the incredible art that adorns every inch of ceiling and walls in the Sistine Chapel. I was literally lost for words - and trust me, this doesn't happen very often! I have done very little travelling in my life, and not had the opportunity to visit many countries, so I am taking in and appreciating every detail. Soaking in the warmth of the Italian people; the simplicity of their delicious culinary triumphs, breath-taking architecture which combines both great art and history, it is a writer's heaven, for inspiration lingers at every turn we take. I hope I am able to relate to you the beauty of this place; the sheer joy I feel at this moment. Life sometimes takes us to places most unexpected, and here I find myself in an extraordinary city that I have always dreamed of visiting, but didn't think I would ever get to see. So maybe dreams do come true. When I throw a coin into the Trevi Fountain tomorrow, my greatest wish will be not just for me, but for all fellow sufferers across the world. One isn't supposed to reveal one's wish, so I won't tell you what it is, but I think you can guess what I'll be wishing for.

When in Rome - June 3rd 2012

Yesterday we took a taxi to the beautiful Trevi Fountain, that draws tourists from all over the world, and throwing a coin into the water, I made my wish. Many of the streets are crowded, narrow cobbled - most unsuitable for a wheelchair. Last night from our hotel room we could hear the bells peeling from the Basilica. The unfamiliar sound enchantingly pierced the night, resonating throughout the streets. As we sat at a little cafe in the evening near our hotel, (and I hope my doctor isn't reading this!) I had Cappuccino gelati for dinner! I said I would have ice-cream for a friend - and I kept my word, in fact I kept it so well, I had another one today for good measure! And if you are wondering - yes it was delicious! As we sat there, a man playing the accordion added to the atmosphere, and holding my husband's hand, it was a feeling of pure joy. There are moments in life when simple pleasures or a fleeting moment is so intense and unforgettable, that you wish it would last forever. Although we had checked the hotel had a lift, it did not occur to us to ask if the lift would be large enough to accommodate a wheelchair. Who would have thought that a lift would so small, that my wheelchair had to be folded to fit inside? I have never seen a smaller lift in my life before! Insomnia like an unwelcome stowaway has followed me to Rome, and here I sit in the early morning hours when probably even the hotel kitchen staff haven't started their day. So I guess no matter where you 'roam', Parkinson's symptoms tag along too! I thought I would be tired and able to sleep, but no such luck. I have to tell you about the bathroom - for it is decorated so ornately, with gold swirling moulding, black and white marble tiles; giving one the feeling of being in a Roman palace. Standing in this grand opulent decor in my simple cotton pyjamas brushing my teeth, I almost feel under-dressed! Despite all these wonderful distractions, I am here for a purpose, to represent Gaucher patients and to give my oral presentation on "Writing and Therapy". Being invited to this Congress feels like the culmination of my efforts over the past year; writing my book of poems, blogging each day, writing back personally to each and every one who has contacted me, public speaking bringing greater awareness to both Gaucher and Parkinson's, and taking part in a new programme to familiarise student doctors with chronic patients. Tomorrow is the big day, so today I will rest and we'll take things very easy.

Congress for Narrative Medicine & Rare Diseases - June 4th 2012

Last night we had an early supper, after a restful day, ensuring that I should be fresh for my presentation. Today is the day, and we got up bright and early, and had a robust breakfast. We'll be taking a taxi to the Congress, and shall arrive there a little early, so that we can meet the organisers, and see the room where the lectures will be taking place. I don't feel nervous, but am very excited to be here and taking part. Registration is at 09:00. Participants will be welcomed at 09:40, and at 09:55 there will be an Introduction. Following this at 10:10 the renowned Prof. Brian Hurwitz will speak (who is from England), after which it is yours truly. I will be speaking at 10:55 for 15 minutes with a further 5 minutes for questions. There are a number of interesting speakers throughout the day, a break naturally for lunch, several poster presentations and the Congress will come to an end at 17:00. I will write my blog later tonight and let you all know how it went. Thank you everyone for all your support and messages of good luck. I almost feel you are with me in spirit. Arrivederci for now!

This morning we arrived early at the Italian Institute of Health and at 09:00 entered and registered. We were warmly welcomed by the organisers with whom I have been in e-mail contact with for several weeks now, so it was nice putting faces to the names. Wearing our tags we were ushered to reserved seats in the front row as slowly the lecture hall filled up. We were given simultaneous translation headsets, although much of the Congress was in English. It was a pleasure to finally meet Prof. Brian Hurwitz, and sitting next to him, I soon discovered what a charming man he is. Hearing his opening lecture, there was a connection between his talk and mine as he spoke about Dr. James Parkinson's powers of observation, leading him to write an Essay on the Shaking Palsy in 1817 which was later named (Parkinson's disease). It was then my turn to talk, and without hesitation or feeling nervous, I went up onto the stage, and spoke for 15 minutes. Unlike most speakers there today, I didn't read my presentation, for I particularly wanted to speak straight from my heart, which I believe captured the audience's attention. Right at the end of my 15 minutes I read a shorten version of the very last poem in my book "This isn't the end, there's always tomorrow". There was a burst of applause, and then five extra minutes, where several people asked questions. During the morning break, and at the lunch break it was a great opportunity to mingle with all the other guests, who were mostly doctors, professors, academics working in the medical field, and a few patients representing various diseases. I was there fundamentally to represent Gaucher disease, a rare disease, although naturally I spoke about Parkinson's too as this is part of my story and what prompted me to write my book of poems. We are now back in the hotel and thought I would let you all know that it went very well indeed. It has been a long day and I am very tired, but extremely happy and satisfied at today's success. This congress was tailor made for me; Narrative Medicine and Rare Diseases - to narrate by telling a story is one of the things I do best, and I certainly qualify for the rare disease part! A room full of prominent people in the medical field today got to hear about Gaucher and Parkinson's disease - mission accomplished!

Returning home \- June 5th 2012

These past few days have flown by very quickly, and here we find ourselves packing our cases and heading for the airport. It has been the most amazing once in a lifetime experience and one I shall never forget. I am only sorry to be leaving Italy so soon. A few days are not enough to thoroughly take in and see this wonderful country with such warm welcoming people. Having never been to Italy before there was so much we didn't have time to see, we will have to come back for a longer visit. Every building, window or arch are richly decorated with stone carvings or paintings and one merely has to look down any street here to see the magnificent art that is there right in front of your eyes, like a permanent display of an era long ago when a city such as Rome took to heart the meaning of beauty. The Congress was well organised, it was great meeting everyone, and I thank them for the invitation, affording me the opportunity to give an oral presentation. This trip and in particular today, will remain a firm wonderful memory. I am so fortunate to have a loving husband who supports me in all I do. As I said in my presentation, "there's a silver lining in everything, you've just go to know how to see it!"

Back Home – June 6th 2012

It is good to be back home and sleeping in our own bed. As the old saying goes "there's no place like home" – although I have to say "there's also no place like Rome!" Italy is a beautiful country and well worth a visit. It will take me a few days to recover from this trip. Travelling abroad isn't easy for me; although we took my own wheelchair making things as comfortable as possible, and we booked in advance through the Airline for "Special Assistance", the journey was still very gruelling. Most international airports are so large, requiring a lot of walking, not to mention standing and waiting in line, I couldn't travel without this necessary help. My body feels exhausted, and I am depleted to the extent that it's hard to function. It always takes me several days to get over a journey like this, and I will try to take it easy for the rest of the week. Our darling daughter came to pick us up from the airport and it was very good to see her smiling face. Walking into the house, we were greeted by our devoted dog whose tail wagged constantly like the metronome on a piano, and "welcome home" signs, along with beautiful pink flowers in vases everywhere. It was a most memorable trip; a great honour to be invited to speak at the Congress and I thank all those involved who must have worked hard ensuring its success. I met some amazing people, with great minds and innovative ideas, all striving towards a better health system marrying the current health system along with narrative medicine. I was fortunate to get a little taste of an incredible country that I had long dreamt of visiting, and I am so very glad we went enabling me to be represent Gaucher disease from a patient's perspective.

Routine treatment - June 7th 2012

Now we've returned home, immediately falling back into regular routine, our trip feels like a dream. I sit here this morning typing today's blog entry with one finger, which is taking forever, having little else I can do right now, since I am hooked up to the I.V. receiving the VIPRIV medication for Gaucher. The delightful nurse, who always wears a smile, arrived bright and early at 09:00. With years of experience under her belt, she skilfully slips the needle into my vein, without me feeling a thing. Although this is her paid job, I have to tell you, she is a wonderful lady who really cares about the patients she looks after and goes above and beyond to help as needed. When treatment first became accessible for Gaucher patients, the enzyme replacement therapy was only administered in hospital, but for some years now, thankfully "home treatment" has been made available, improving the patient's quality of life drastically, by spending fewer hours in a hospital environment. The only problem is, now that I have Parkinson's too, sitting still for an hour and a half whilst the infusion drips the lifesaving drug into my veins, is difficult to say the least. Gaucher and Parkinson's – what a combination!

Wearing two hats - June 8th 2012

I am in the strange situation of wearing two hats – one for Gaucher and one for Parkinson's disease. I have often been asked which disease, do I suffer from more. I would have to say on a daily basis, Parkinson's is much more debilitating and as it is a degenerative disease, medications have to be constantly changed or doses altered. However, when Gaucher decides to play havoc with my bones, the pain can be extreme, occasionally requiring hospitalisation, receiving very strong pain killers to dull the agonising pain. Thankfully since I have been on enzyme replacement therapy (VIPRIV) these events have been less. A sense of humour is so important – without this I don't know how I would get through the tough times. Laughter they say is the best medicine, and sometimes life can get so difficult and become absurd, that you've got to laugh! If you would like to take a look at one of my poems entitled "You've got to laugh", it has been put up on Ladybugflights Books Website. In my recent oral presentation which I gave in Rome, I said "There's a silver lining in everything, you've just got to look for it." I wish you all a good weekend, and hope you can see your silver lining!

The 'happy gene' - 10th June 2012

I had four wonderful older brothers. Sadly two have passed away, and are always in my thoughts and very much missed. I am grateful to still have two brothers, but this morning I want to tell you about one particular brother who shares my fate in being born with Gaucher disease. Just thinking about him, immediately brings a smile to my face. He has a youthful spirit, a contagious laugh, smiling eyes and is an incredibly brave man who suffers greatly from ill health, yet remains dignified and composed. We both express ourselves through different mediums; I love to write and my brother draws and paints. He is an incredible artist and extremely talented. You only have to meet my brother once to realise that he also possess the "happy gene" that I have spoken of before. The "happy gene" of course does not really exist; it is merely a phrase that I have coined to describe the incurable cheery positive personalities that my brother and I possess which cannot be extinguished or doused. No matter what circumstances we find ourselves in, the two of us always manage to put on a brave smile, baffling the doctors and those around us with our British dry sense of humour and optimistic attitude. This "happy gene" is our secret weapon to get through life.

Meeting someone rare - 11th June 2012

Meeting a person who is in the same shoes who understands completely what you are going through is a wonderful feeling. I was very fortunate to meet someone recently suffering from Gaucher and Parkinson's, and feeling almost as if I had suddenly found a long lost cousin, there was an instant connection between us. As soon as I described the pain, discomfort, difficulties, hopes and worries, I barely had to finish my sentence before realising for the first time in my life; I was sitting with someone who had the same two diseases as me and knew what I had been through. To put into words what I felt, even for me, is difficult. There are not too many patients in the world who have both diseases and the comfort and supportive feeling I experienced, finally meeting another person who walks in my shoes, wearing two hats; I am definitely no longer alone. Due to privacy laws, doctors and hospitals understandably cannot put patients in contact with each other, despite the huge benefits that can be gained for both patients and their families. Sometimes one has to wait a very long time, to find each other, be it by chance or an introduction through a third party. I am so grateful to those who brought us together and thank you for this special unexpected connection.

The need for rest - 12th June 2012

Knowing when to rest and listen to your body is terribly important. With all the excitement recently of speaking at a Congress in Rome, I have been running on adrenaline, and finally yesterday it was as if someone had removed my batteries. I knew this would happen, and will have to be patient now, rest as much as I can, take things easy and regain my strength. I met a lady in Rome, who like me, possesses the 'happy gene', and despite her being desperately ill, having many operations and spending much time in hospital, no one would ever guess how very ill she is, simply by looking at her. She asked me how I deal with this issue of not being understood. I told her that I had exactly the same problem; having a cheerful attitude and not making a fuss, totally confuses people, especially doctors. I shouldn't have to go around with a label stuck to my forehead informing everyone I'm chronically ill despite the smile on my face, or have to moan and wear a sad expression so that all would understand how ill I actually am. It is far better emotionally / psychologically and healthier to be positive and cheerful, not just for myself, but for my immediate family, friends and all those around me. It wasn't until I wrote my book of poems, that those who know me realised and understood what I go through on a daily basis. It's a bit of a conundrum; appearing happy gives the impression I am well, yet I refuse to go around with a long face simply to ensure people realise my real situation.

A long day in hospital - 13th June 2012

Yesterday we spent a very long day in hospital, arriving at the emergency department around 02:30! I had the most excruciating pain in my right shoulder, and when I found that even my strong painkillers wouldn't dull the pain, we decided to head for the hospital. The nurses and doctors are quite remarkable, and with an onslaught of emergency cases, they were under a lot of pressure. Thankfully it turned out to be inflammation in the shoulder joint and although terribly painful, hospitalisation was not necessary, so I was sent home with prescriptions and my arm immobilised in a sling. It will take a few days to recover, and I must learn to take things a little easier. Thank you everyone for your concern and good wishes. I hope you'll understand and forgive me if I don't write back thanking you all individually, but typing with one finger on my left hand which is most effected by the Parkinson's, is not an easy task. Sometimes I'm my own worst enemy, trying to do too much; I need to take some of my own advice and slow down the pace.

Read and relax \- 14th June 2012

There is nothing I like better than perusing at leisure a bookshop with rows upon rows of tempting books. Better still are the book shops which have a café on their premises, what a wonderful combination of simple pleasures. Sitting in a comfortable armchair feels familiar and welcoming like an old friend, as I ritually run my hand over the latest book purchased. Opening a new book the spine creases as I begin to read, turning each page, crisp clean paper beneath my fingers, I am filled with anticipation of what lies within. If a book is good, I lose track of time and my surroundings fade as I am immersed in the story. I think anyone who loves reading will agree that as you near the end of a great book, you almost don't want it to finish, wishing the experience to continue just a little longer. I was a ferocious reader, but in recent years, my concentration levels have diminished and my eyesight is not good - thanks to Parkinson's! making it a tremendous effort to read a long novel. I am sad to say that I now stick to reading shorter stories, but continue to write like there's no tomorrow!

Frequent Flyer \- 15th June 2012

I said to someone recently about being a "frequent flyer" of hospital visits, to which she smiled, knowing full well what I meant. Anyone who has gone through childbirth remembers fondly, that in the 9th month, a small bag packed with essentials would be ready so that at a moment's notice, all one had to do was grab the bag and aim straight for the hospital. I'm not pregnant, but I do have a little bag that is packed at all times, sitting at the back our wardrobe, with all essentials should I suddenly be hospitalised. This may sound a bit absurd and overly organised, but with much hospitalisation experience under my belt, it saves a lot of time and I know I'll have everything I need with me. I guess I never grew out of being a girl guide, where our motto was "always be prepared"! However prepared I try to be, one can't plan for every eventuality, and I most certainly didn't envisage being unable to use my right arm. I hope this is only a temporary situation, lasting a few days, for the thought of being incapacitated even further would be devastating. I'll have to be patient and take each day as it comes, and remain positive and hopeful that this episode will soon be behind me. I wish you all a good weekend.

Severe pain – June 17th 2012

I have been in severe pain for several days, unable to use my right arm or hand at all, apart from writing my blog laboriously slowly using one finger on my left hand. I frustratingly cannot dress myself, cook, or do almost anything independently at present. How do I continue through such periods? I count my blessings, and think of all the wonders that life holds. Life is precious, and as poorly as I am right now, I remind myself of what makes life worth living. There is nothing more beautiful than the innocent contagious laughter of a young child, or the endearing toothless grin of an elderly person who may no longer remember your name, yet still has a mischievous twinkle in their eyes reminding you of the person they once were. I love the thrill of the first rain, refreshing the garden washing away all the dust. Who doesn't love the cheerful sound of a champagne cork popping and glasses being filled to celebrate some happy occasion? The delicious taste of dark chocolate as it melts in your mouth. Watching the sunset over the sea, the colours glistening across the water are simply breath-taking. The voice of a dear friend on the other end of the phone letting you know they're thinking of you. Receiving a bouquet of flowers and the pleasure they bring every time you look at them. Have you ever had a kiss that made your knees go weak? Or made love on a rainy afternoon that leaves you smiling like a giddy teenager all the following day? My heart is warmed by a certain look my husband gives me and only me, that speaks volumes. These are some of my favourite things. Having brunch yesterday with some friends, who although we have known just a short time, it's as if we've known each other for years. Sometimes you meet people who you simply "click" with, and it was wonderful to spend time in their company and we are never short of conversation. I was naturally very tired afterwards, but I was able to rest in the afternoon, and I know that I'll get through this period, my shoulder will heal, and life will continue.

Meals on wheels \- June 18th 2012

Having good friends who at a moment's notice will drop everything to lend a hand is a friendship not to be taken lightly, but cherished and appreciated. Turning up at our house with "meals on wheels" our kitchen suddenly became a flurry of activity, everyone doing something, except yours truly, and as quick as a flash, a wonderful meal appeared on the table. Gestures that are made straight from the heart and without fuss or debate, knowing I am unable to cook or prepare any food, and realising my husband and daughter are both working, things are understandably a little difficult in our household right now. Instead of saying "call us if you need anything", to which I would never pick up the phone, since I hate asking anyone for help, they took it upon themselves to simply act, offering the most practical help they could think of. If you have family or friends who you know are in need of help (for whatever reason), don't wait to be asked, just roll up your sleeves and help in whichever way you feel will be most appreciated.

Describing pain \- June 19th 2012

Many people when asked by a doctor "what does the pain feel like?" are baffled by this seemingly redundant question, as if the doctor should automatically know what the pain feels like. A doctor has good reason to ask, but sadly often patients are unable to describe in words or express the pain and how it manifests itself. However, there are many kinds of pain, and the varying types can indicate what is actually happening, giving a good indication to the doctor, where to start from, which tests to run and what the diagnosis is likely to be. Having lived with pain my entire life, I am an old hand at describing the pain I am in. Pain is very tiring and wearing, and being in pain constantly for the past 7 days, I am exhausted. The sharp throbbing doesn't let up, and when I move my arm, the sharpest of pain pierces my arm making me gasp for breath. Of course everyone's idea of pain is different, and the pain threshold can vary considerably – there are no standards or guidelines to follow, pain is individual and everyone reacts in their own way. Being born and growing up in England, my British stoic nature often confuses doctors, for they do not realise how bad the pain is and to what extent I am suffering, therefore communication with your doctor is of the utmost importance.

A taboo subject \- June 20th 2012

One of the many symptoms of Parkinson's and probably other diseases too, is constipation. I can't believe that I'm actually writing about this – but I know that fellow sufferers are reading my blog, and I feel that this problem needs to be addressed. If you have Parkinson's, you will be able to relate to what I am saying, and probably thinking "thank goodness someone's talking about this at last". It appears a taboo issue – too personal – too intimate and just too darn embarrassing to talk about. Yet here I am, writing about this very common problem that affects so many millions of people in the world. It is not to be made light of, as it can be deeply troubling, a constant problem, uncomfortable and even painful. Some Parkinson's patients experience constipation due to the improper functioning of the autonomic nervous system, which is responsible for regulating smooth muscle activity. If this system is not working properly, the intestinal tract may work slowly thereby causing constipation. In addition, various Parkinson's medications cause constipation, and it is a well-known fact that strong pain killers are also a contributing factor. Add into the equation a lack of mobility and exercise and this problem becomes magnified. Everyone has their own way of dealing with constipation; be it laxative pills, eating porridge (oats or bran) for breakfast, adding extra roughage to one's diet, drinking more water and exercising as much as one can. I hope that speaking frankly is of help, and you realise that you're not alone!

An old fashioned girl - June 21st 2012

If you have been following my blog, you will be well aware that I love to write and read books. I'm an old fashioned girl at heart and enjoy holding a book in my hand; feeling the paper beneath my fingers, turning each page, there is something very comforting and tactile in reading a book. With today's technology, there are so many ways to enjoy reading without actually killing a tree! but despite being able to see the immediate advantages of an electronic book reader, I still prefer an old fashioned paperback book. For over a week I have been in terrible pain and lost the use of my right arm and hand rending me pathetically incapacitated. The smallest of tasks becoming quite difficult and even trying to read a book is very hard when you have only one hand. This is where an electronic book reader really comes into its own. Being light, thin and easy to hold or prop up in bed, turning the pages becomes a cinch and making the print larger so that I can comfortably read without straining my eyesight is a pleasure. I don't think for one moment that this marvellous new technology will ever replace the book entirely, but it certainly captures a market and is becoming increasingly popular. Not having use of my right hand at present, when hooked up to an i.v. the other day in my good hand, I was suddenly left with no hands at all to hold a book or turn pages, so clearly anyone who is bed bound, hospitalised frequently or disabled in some way – one of these reading devices would be of great help.

Cabin fever - June 22nd 2012

When one is disabled, chronically ill, or simply unwell for a prolonged period of time, the four walls of one's home can start to close in; looking at the same view day in day out gets a little tiresome, no visual stimulation, isolation and a feeling of claustrophobia sets in, or as some would call it: "cabin fever"! It is vitally important to have a small outing now and then, to spend a little time outside the confines of one's own home. Even just a trip to a local café can save one's sanity and leave one feeling refreshed. It's a fine line to tread, staying active and busy, whilst taking care to rest and not over do things. I plead guilty to "do what I say and not as I do", for in recent weeks, I have overtaxed myself, and am now paying the price. I was given some very sound advice the other day from someone whose husband had Parkinson's, and therefore understands all too well my current condition. I realise that I have done too much and must now take things a little easier, slow down and get lots of rest. Realising ones limitations and ever changing circumstances with a degenerative disease and coming to terms with a lifestyle change are all part and parcel of any chronic disease.

A hard task - June 24th 2012

Being a caregiver is probably one of the hardest tasks I can think of. To stand by helplessly watching as this rotten disease grabs hold of a loved one, is a heart-breaking role to play. Trying to comprehend and understand what someone is going through on a daily basis is far from easy. Accepting this unexpected and uninvited position in life, which changes plans for the future and throws everything awry, yet being able to continue loving unconditionally whilst caring for a spouse who's suffering a degenerative disease takes great heart and shows immense dedication. Today is the birthday of a brave lady who in difficult circumstances found great inner strength, courage, loyalty and showed true grit. The heroic lady I speak of is my sister-in-law who tirelessly cared for my brother until he passed away. I am sure that many people, although not knowing you personally, have walked in your shoes and would want to join me in wishing you a happy birthday and hope that today you are doing something special that you enjoy. My thoughts and love are with you.

Listen to your body - June 25th 2012

You know yourself better than anyone, but occasionally, like a horse wearing blinkers, only able to see what is straight ahead, we all need a loved one, someone who really cares, to point out things we may not be able to see. As a patient, seeing the entire picture isn't always possible and Parkinson's, like so many other diseases, presents many symptoms and complex problems. Advice from those who are walking the same path, either as a patient or a caregiver, can offer invaluable insight. I was diagnosed five years ago with PD, and feel I am on a constant learning curve, always gleaning new information, tips and thoughts of how to improve my quality of life. There are sometimes people that know nothing about PD but simply want to give advice, so I politely listen, and only take note of input I consider worthy. My spirit still feels young, able to battle and conquer anything, yet my body is not willing, and try as I might I cannot keep up the pace I have been running at during the past year. The most important thing to me is my family and friends, whom I hold dear, and I want to be here for them. So I have made a decision to cut back on some of my activities that have spiralled into a sort of crusade since my book came out. I will continue to write my blog, for I know this is being read around the world, and I shall complete writing my third book which I am three quarters of the way through writing. I think we all have to make decisions in life to focus on what is important, and where ones energies and time are best spent. Being in hospital recently was a wakeup call for me, so my blinkers are off and I can see the entire picture much clearer now.

Keeping hopeful - June 26th 2012

Reading the news, it is very encouraging to see that every so often a story appears, reporting on new research or clinical trials related to Parkinson's and various similar diseases. With so much happening all over the world, it gives me hope that maybe we are not too far off from finding a cure, or at least a treatment that stops the disease from getting any worse. There is definitely greater awareness today about Parkinson's and many people doing wonderful voluntary work, fund raising, running events for support groups and doing all they can to ensure the momentum continues, keeping this disease in the forefront of the media, encouraging the doctors, scientists and pharmaceutical companies to strive forwards in finding relief for the millions of sufferers around the globe. I am in the unusual position of suffering two diseases, Gaucher and Parkinson's which puts me in a very small group, and from what I understand there may be only a few hundred recorded cases like mine in the entire world. Put together a rare disease and a fairly common disease, and a special category is created. Believe me; I would much prefer not to be quite so 'special' for apart from my late brother, I have met only one other person, who like myself has these two diseases. You may well have gathered, a support group for Gaucher patients with Parkinson's does not exist!

A cup of coffee - June 27th 2012

I used to love the wonderful smell of freshly brewed coffee, until Parkinson's wickedly stole away my sense of smell. However I still enjoy the intense flavour of good coffee when made properly in an old fashioned percolator, that musically bubbles and hisses when almost ready; topped with hot frothy milk, now that's how I like to start the day! I have found that coffee, (probably as it's a stimulant) much to my regret, does not mix well with Parkinson's, so I now restrict my intake of coffee to just one cup a day. If you could only see my breakfast regime that I meticulously stick to, I am sure you would laugh (or maybe you would understand perfectly for you have your own timetable and system!). I have at long last found the winning combination of when to take my morning pills, leaving enough time before eating, thereby maximising the effectiveness of the Dopamine (Parkinson's medication). All this is trial and error and every person is individual, so what works for one, may not work for another. All I can advise is to play around a little with the gap between taking medications and eating (in particular protein) and if you find there are specific foods or drinks that make you feel not so good afterwards, you may need to restrict intake or even remove those food items altogether. An hour has now passed since I took my Dopamine, so I shall leave you here and have my breakfast with a cup of coffee.

Noticeable changes - June 28th 2012

If you are a Parkinson's patient, have you noticed a change in your own character? I can't find any information about this subject, and doctors don't seem to make much of it, but it's an interesting change that my family and I have noticed. I don't know if it's Parkinson's or the medications – but there are definite changes. I'm still the same person I have always been – my fundamental core has not changed, but I'm talking of small changes that may seem irrelevant to the medical field, but to the patient are very noticeable. The first change I noticed was that my taste in clothes, bags and shoes had drastically changed. My taste in food has also been affected, and I prefer to eat simple meals; foods that don't contain too many ingredients, and steer clear away from anything containing preservatives, colourings, flavourings or any other additives. I was always afraid of speaking in public, and yet for the past year I have been speaking in front of audiences whether it be a couple of hundred people or more; the number does not phase me, and so focused on getting the message across by telling my story, I am not nervous and feel quite comfortable as if I have been doing this my entire life. Much to the surprise of my family I can now watch a horror film without covering my eyes and having nightmares for the following week. I have to admit that horror films are still not my cup of tea, but it is interesting that I am now able to watch without jumping off my seat or running into the other room. If you are a doctor who can explain these changes or a patient who is experiencing similar affects – I'd love to hear from you.

Crying – June 29th 2012

Crying is not a sign of weakness, nor is it a waving red flag indicating a person is depressed or that something is terribly wrong. Crying is a healthy normal outlet of emotions that in my opinion should not be stifled. I am not depressed and stay remarkably cheerful considering my complex health situation battling two chronic diseases, yet there are times that frustration or simply disappointment when yet one more thing at which I was once competent, is taken away from me by my disabilities. The powerful realisation that one's life is changing and will never be the same again; accepting this without any sadness or tears would be extremely strange and abnormal. Occasionally, a memory can be sparked of a loved one who has passed, bringing one to tears; this too I believe is normal and acceptable. However, I strongly stress; if you are crying constantly over almost everything, then I urge you to please seek help. Suffering chronic disease and being disabled; there is no shame in needing and seeking professional advice, for a strong undeniable link between the physical and emotional aspects of ill health have to both be considered and treated where necessary.

A patient patient! - July 1rd 2012

I am trying to be a patient patient, taking things easy, hoping that over time I will recover from my recent set-back. This is harder said than done, since I am not one for lying in bed and doing nothing. It's good from an emotional and physical point of view to keep occupied and busy when chronically ill, yet there are times when one has to simply be patient, letting time, rest and sleep restore one's health. I find this a hard balancing act, keeping active whilst not over taxing myself. Knowing I need to slow down, I had to decide which activities were the most important to continue and those that for the time being can be put on hold. I have had some help in the last few weeks from a friend who is a terrific organiser and types extremely quickly, for I found myself over run with e-mails and questions, but I was not in any condition to tackle typing with one finger! I would like to thank her so much for lending a hand. Now feeling much better and able to type again with both hands I will start to work through the e-mails that I have received in the last few weeks. I hope you'll forgive me if I answer a few of your short questions together. As always I honour your privacy and withhold all names. I will in time get to answer all those that require personal replies, so please bear with me and I thank you for your patience.

"Dopamine" is the generic name, but possibly in some countries, a different name may appear on the box, but inside on the slip of paper you will see the generic name mentioned somewhere.

If you feel something is wrong with your vision – don't just put it down to Parkinson's, please get your eyes checked immediately by an eye doctor.

Any kind of physical activity you can safely manage is great, whether it's a special class for PD sufferers, or simply doing your own thing, be it walking or dancing in your kitchen! Just keep mobile any way you can.

Music; good for the soul - July 2nd 2012

My spirits were truly lifted last night when we attended the Opera and saw a marvellous performance of 'Rigoletto'. I have always enjoyed listening to opera but never had the opportunity till now, to attend a live performance. I rested the entire day so that I would be well enough and able to enjoy the evening. I walk with great difficulty at the moment, and told of the many steps and much walking involved, taking my wheelchair was an obvious decision. We were allotted excellent seats in an area meant for disabled and were pleasantly surprised to find the building was very "wheelchair friendly" with ramps everywhere and large lifts. My heart raced hearing the orchestra begin; watching the curtains go up, the audience's excitement and expectations could literally be felt. At one point, the chorus and lead singers were all on stage and their tremendous voices together reached such a crescendo; I felt as if the very roof of the opera house would explode. I wish I could have magically transported you all with me last night; the amazing powerful voices of the singers and the incredible music that Giuseppe Verdi superbly created literally touched my very soul. Music is often used as therapy, and last night I was drenched in the enchanting therapeutic qualities of the opera. For someone with Parkinson's to be able to sit still for around 3 hours is no mean feat, so I'll let you in on my secret! I took half a Clonex pill (Clonazepam) ¼ of an hour before curtain up, which normally is taken only at night just before going to bed. I have also taken Clonex when flying, for it simply relaxes all the muscles enabling one to sit comfortably for a lengthy period of time. It is not generally advisable to take this during the day time, but for an important rare occasion such as flying or sitting through a lengthy performance, it helps considerably. Again I hasten to add; I am not a doctor and merely a patient sharing my experiences with you, so please check with your own doctor that this option would not be detrimental to you in any way. Last night was incredible and yet another experience I can strike off my "bucket list"!

Great Ormond Street Hospital – July 3rd 2012

I was diagnosed with Gaucher disease at the age of five; little information was known about this rare condition in those days, and therefore it was decided that I should be under the care of Great Ormond Street Hospital, the famous children's hospital to which the legendary author J. Barrie gave all the rights of "Peter Pan" in 1929. I remember visiting this hospital once a year for a general check-up, and every waiting area, department or ward had the most beautiful carved wooden rocking horses, each one different and individual. I spent my 14th birthday in that hospital, which was the last year I would be accepted there since I was no longer, considered a child. Unlike Peter Pan, I had to grow up and have since celebrated several birthdays in various other hospitals, but only in Great Ormond Street Hospital, where every child is special and the kitchen staff never grow old, did they bake me a birthday cake. I can't say for sure if Tinkerbell visits there from time to time, but some magic fairy dust must have been in the air when I underwent major surgery, the surgeons not knowing if I would survive or not, were delighted with their success when they eventually sent me home to recuperate. Thank you Great Ormond Street and may you continue your magic of helping the children that come through your doors.

Ladybug - July 4th 2012

One shouldn't need an excuse to celebrate. Every day can be a celebration of life; making the most of every moment and each opportunity that presents itself. I am a firm believer of "being in the moment". One never knows what tomorrow will bring, and life can take unexpected detours along the way, holding many surprises in store. I was thrilled to see that an article about my story appears in the Ladybugflights Web site in their on-line magazine. Here is the link if you'd like to take a look. http://www.ladybugflights.com/women.htm#WOMEN

Today being the 4th July reminds me of the first time I visited the United States, which seems a life time ago, for I was merely a slip of a girl. Arriving on the 4th July, looking out of the window that first evening we watched a marvellous fireworks display. Having grown up listening to "Letter from America by Alistair Cooke", which was broadcast on the BBC radio in England once a week, travelling to the USA, was an exciting trip that I fondly remember. Happy 4th July America; enjoy your holiday and the fireworks!

Owner and dog alike - July 5th 2012

I have often heard it said that an owner chooses a dog that resembles themselves. I would hate to think I look like a Dogue de Bordeaux with sad eyes, droopy face, many wrinkles and folds of skin, huge scary teeth, not to mention the highly unpleasant constant drool for which these dogs are notorious! Of late, I am reluctant to agree that there do appear to be some similarities emerging! Both of us have extreme difficulty in walking, getting up when we've been lying down and have painful bones and joints. I had a cake in the oven and failing to set my reliable timer, promptly forgot there was something baking. Having no sense of smell due to Parkinson's and forgetting to use my oven timer, I suddenly noticed my dog sitting next to the oven staring at me. She didn't move from that spot and like a child playing the game of who can stare the longest, her eyes determinedly focused on mine. Eventually she must have got fed up at my stupidity of not comprehending what she was so clearly trying to tell me, so she gave a short sharp bark and continued to stare. Then it dawned on me, and I opened the oven immediately just in time as the cake started to burn on top. Dogs are amazing – and although we trained her with all the usual commands, we never trained her to be an 'assistance' dog. Over a period of time she took on this role by herself, somehow her instincts allow her to sense when I'm not well and she understands when I'm in need. So the dog saved the day, or rather I should say the cake!

The years have flown - July 6th 2012

Having a creative outlet, be it painting, writing, or some other hobby, when disabled and home-bound most of the time, becomes extremely important. I have always loved writing, but with today's technology, putting ones thoughts down on paper is so much easier with the aid of computers. Although my dexterity is not good due to Parkinson's thankfully the spell checker and auto-correct facility are a huge help, otherwise you would be finding my blog entries extremely difficult to read. I first learnt to 'touch type' at school; a sheet of paper was taped over the keys, placing ones hands underneath the paper learning to type by copying the written text from the blackboard at the front of the classroom. Long gone are those days, but I was reminded of this when I came across 'The Typewriter' by Leroy Anderson where a full orchestra is accompanied by an old fashioned manual typewriter, not dissimilar to the one I learnt on many years ago. How times have changed; when an office had telex machines that spewed out long tapes containing little punched holes, Gestetner machines that used special inks and stencil paper, the arrival of the electric typewriter with interchangeable golf balls giving one the choice of two different fonts! There were no mobile phones, and yet today if I leave the house without my mobile phone, I feel practically naked. The mobile phone has to be one of the most useful inventions, and often I wear it on a cord around my neck, should I happen to fall or suddenly need help – my phone is with me at all times. Also when hospitalised, taking a phone with can be problematic, so again I wear it on a cord around my neck.

Non-slip floor tiles - July 8th 2012

I received a few e-mails, all appertaining to non-slip floor tiles, so shall endeavour to answer your questions: In a bathroom, it is highly advisable to have non-slip floor tiles, particularly if you have a 'wet room'. Today they come in many colours, sizes and designs, so the choice is wide. These tiles are more difficult to clean, and don't feel as comfortable underfoot for they are slightly rough, but they do the job for which they were made. Understandably, they are a little more expensive, but considering the small amount of floor tiles required for an area such as a bathroom or wet room, it is well worth the additional expense. If your budget will allow, it may well be worth having non-slip tiles on your patio too. If it has been raining, or you have garden sprinklers, the surface of your patio can become dangerous and slippery. Less expensive flooring for a garden path is the old fashioned brick, which requires no heavy concrete base, and simply a sand base topped with shingle, when laid by a professional, will stay in place producing an even surface for a wheelchair to manoeuvre and a non-slip surface to walk upon. Wooden decking for paths and patios is an option, but the bothersome yearly maintenance required is an addition you may prefer to do without. Ensuring one doesn't fall is of utmost importance, so don't cut corners – safety comes first.

Custom made bathroom - July 9th 2012

Most bathrooms in a house or apartment are not suitable for a disabled person and adjustments or sometimes extensive work is required. Simple things such as light switches that can be reached at a comfortable height, make all the difference. A washbasin should have no cupboard beneath it, enabling anyone in a wheelchair to sit up close with ones knees tucked under the basin. Handrails by the toilet and in the shower area are an absolute MUST. If you can do away with shower doors along with their runners on the floor leaving the space entirely open with a flat floor surface - this is ideal. A built-in permanent seat can be created in the shower, or if circumstances require a simple plastic chair or bathroom wheelchair, will then comfortably fit in without any complicated manoeuvring. Even thinking about where you put the toilet roll holder is important, making sure it is in reach and one doesn't have to be a contortionist to reach the paper. Making everything easily accessible such as towels on rails that can be reached; shelves for shampoo etc. close at hand and footwear to slip on with ease after a shower may sound simple but are fundamental. All these things are important; not only does this give valuable additional independence to a disabled person in the bathroom, but relieves a little of the extensive help required from the caregiver. These suggestions are not only relevant to disability but to simply getting older, which try as we might, no one can avoid - so plan ahead.

Hospital roommates - July 10th 2012

The relationship one quickly founds with a fellow room-mate in hospital is like no other. Thrown together at random; finding yourself ultimately in close quarters with a complete stranger, stripped not only of one's clothes, but any need for formalities or small talk. Even before introductions have been made and names exchanged, often the first words are: "what are you in for?" An unexplainable bond is involuntarily made within minutes, and the unwritten unspoken code of survival in hospital for room-mates goes into full action. Each patient looking out for the other, as if about to venture into battle, watching each other's backs. This new friendship only lasts the entirety of the hospital stay, and all the extreme intimacies and honesty shared freely are not required or welcomed outside of the hospital confines. Having spent much time during my life in hospitals, this is an interesting phenomenon that I have come across time and time again. A touching film "The Bucket List" starring Morgan Freeman and Jack Nicholson embodies this unusual alliance that can only be formed in such circumstances, all be it with the Hollywood touch, but let's face it, a film wouldn't be quite as exciting without a little glamour or poetic licence.

Narrative Medicine in practice - July 11th 2012

Although understandably a doctor has time restraints regarding how long he spends with each patient, narrative medicine can still be applied. A doctor, who is aware of the valuable additional tool of narrative medicine, not only can improve diagnosis and ultimately treatment, but also give the feeling of empathy that patients need and deserve. Simply applying the powers of observation can make a difference. When a patient enters a doctor's office, by looking and observing how the patient walks into the room; posture, gait, facial expression, how he or she sits down, can within a few seconds summon up a rough picture indicating the condition both physical and emotional. Every detail, no matter how small, if observed and noted can be of tremendous help, possibly filling in information or details, like missing pieces of a jigsaw puzzle; a larger, clearer picture comes into view. Eye to eye contact; another very important feature of a good consultation, and using the patient's first name immediately makes even the shortest of visits more personal, leaving the patient satisfied he/she has been seen as a person, an individual, not merely another case in the endless stream of patients a doctor generally sees each day. These practices require little additional time, on a regular doctor's appointment slot, and yet can vastly improve the outcome for both doctor and patient. The patient can also help to get the most out of a short time period by arriving prepared; making a list of questions, or new symptoms and additional information that may be pertinent. A list ensures nothing is forgotten, no precious time is wasted, which again helps doctor and patient with a joint goal, work as a team.

Multi-disciplinary team - July 12th 2012

Suffering a rare disease, or any chronic condition, a patient's case can become quite complex and the need for input from various doctors specialising in different fields may be required. Having several doctors looking at a patient through their own field of expertise, working together as a team, is the best health care for the patient, enabling a complete picture of the case being presented ultimately ensuring that the correct diagnosis and treatment plan are set in place. I am very fortunate indeed to be taken care of in this manner, and the Professor who looks after me, being one of the leading doctors specialising in Gaucher disease in the world, I couldn't be in better hands. He has a complete team of doctors, nurses, and technicians that he works with, all of whom are trained to spot the unusual abnormalities that are manifested in Gaucher disease. Add to this that I have Parkinson's as well; my doctors have their work cut out for them! Without their dedication and excellence – I don't know where I would be today!

TGIF - July 13th 2012

It has been a long week, and the phrase 'Thank God it's Friday' comes to mind. I don't know who thought of naming a chain of restaurants with such an unusual although undoubtedly memorable name, but maybe whoever it was, had just undergone a week like mine! This week has been tough; Parkinson's leading some kind of maddening mutiny, a frustrating fiesta where internal tremors have persistently partied 24/7 in my body. I wish I could throw Parkinson's out like some kind of unwelcome gate-crasher and tell it not to return. Wouldn't that be great? When not able to work; adhering to no strict schedules, the days tend to drift into one another. I have tried to create some form of routine that gives my week a framework. Despite being housebound, I find plenty to occupy myself, but yesterday a friend understanding that I hadn't been anywhere in a while, kindly found the time to take me out. I appreciated her being so thoughtful and understanding, and it was a welcome outing. The days pass quickly, and occasionally find that 24 hours are simply not enough in one day. It's a shame that the government can't add on an hour or two; would it be such a problem? After all, they confuse the entire population by putting the clocks back and forward twice a year for 'daylight saving', and I don't know about you, but this yearly performance always leaves me feeling hard done by. Did we miss out on an extra hour of sleep? Or did we gain an hour blissfully slumbering? But thank goodness for Fridays, a special day, signifying the end of the week, and the beginning of the weekend. This is a time when family and friends can get together and enjoy a leisurely meal with a glass of wine. Have a good weekend everyone!

Parkinson's Picnic – July 15th 2012

We all have a lot to thank John Montagu who was the Earl of Sandwich in England, when in 1762 he invented the small meal that could be eaten with one hand, which today we call the "sandwich"! The sandwich has to be the most Parkinson's friendly food, in particular when going out or unable to sit comfortably at a table. Who'd have thought that two slices of bread literally glued together with a combination of delicious moist fillings, would make a satisfying not to mention easy meal to eat, especially when in company. There's nothing worse than the embarrassment of struggling to eat something whilst trying to remain dignified, as you feel that all eyes are upon you. My local dry cleaner is always delighted to see me, when I appear with yet another impossible stain to remove from an article of clothing. I think he should have a special rate for Parkinson's patients, a bit like a "frequent flyer club" except this would be a "frequent stain club"! Sandwiches are a great solution for a picnic or having guests over; how about an old fashioned English cream tea, where tiny bite size sandwiches are served along with dainty cakes and scones – all finger food and perfect for Parkinson's!

Getting the message - July 16th 2012

Have you ever felt like someone was trying to send you a message, as if the universe in its vastness had singled you out, and with every turn you make, the strangest feeling that a greater force is watching over you? In the car, an old familiar song was playing on the radio "All Shook Up" by Elvis Presley, which I haven't heard for a very long time, and if you listen carefully, some of the lyrics scarily could be related to Parkinson's instead of the "love" about which he is singing. Arriving at a large store that I suspect we have all visited at least once, many of us are guilty of being regular visitors to the bright blue and yellow giant premises whose products have names one can hardly pronounce, let alone give you any clue as to what they are. Most items are fairly obvious, but there has been occasion, where a guessing game ensues; no matter which way I hold the item, I can't seem to fathom out what it would be used for, and out of curiosity, I ask a sales assistant. Once they've explained, I immediately get it and ask myself "why didn't I think of that?" But I digress; the Swedish store very thoughtfully has wheelchairs and electric carts to use enabling the customer to see the entirety of the huge premises, not missing out on a single item. I sat in one of these electric carts, thinking I would relieve my husband from having to push me, only to find that the speed had been fixed to "extra slow"! How did they know I had trouble last time steering, almost knocking over fellow customers, not to mention several displays and stacks of products on sale. Had this store foreseen my arrival and ensuring safe passage, fixed the speed control to a snail's pace? Having left there it was now late; my husband didn't want us to get home and start preparing food, so we stopped off at a little restaurant. As soon as we were seated, a friendly smiling waiter brought over a small plate with lots of extras napkins and individually wrapped wet wipes before we had even ordered! Was it that obvious; did I have a neon sign above my head informing all and sundry that I have Parkinson's and would no doubt be dropping food and making a mess? Maybe all this meant nothing at all, it was simply co-incidence, or was an angel watching over me? I think we'd all rather like to believe that someone is watching out for us.

Telling family your diagnosis - July 17th 2012

Today I am answering a question that a few people have written asking me: "How do I tell my family I've been diagnosed with Parkinson's?"

Sorry, but there is no simple, easy painless way of telling one's family and friends that you've been diagnosed with Parkinson's, or any disease for that matter. Family relationships are so individual and personal; reactions can be that of complete devastation, others whilst shocked to hear the news immediately show concerned support. In my particular case, we happened to be hosting a family get together at our house, where everyone clearly saw I was shaking; unable to pour the tea, it was a very visual picture, preparing the way for me telling them I had just been diagnosed with Parkinson's. Parkinson's is not something you can hide, nor should it be tucked away like a dark family secret. Being honest and upfront with your family and close friends, although hard to break the news, is ultimately the only way to go. Sadly there will always be those who cannot handle this new information and might curiously disappear from your life, but the people who really count, will rally around and the more informed they are about your condition, makes it easier for them to understand what you are going through.

Two of a kind – July 18th 2012

Meeting with a friend and fellow author yesterday, was as always an enjoyable and refreshing interlude. Sharing much in common, both of us being driven by our respective campaigns that take up much of our daily lives; joining forces, it's a wonderful energetic exchange of thoughts and ideas. We have both come up against similar issues being somewhat in the public's eye, and writing from personal experience about topics, that let's face it, most of us would rather not know or think about, can on occasion catch people off guard. Writing about one's personal life with the intention of letting the world read what you have to say, takes strength of conviction. Hoping that someone somewhere who is struggling with the same issues will gain comfort and support, realising they are not alone, is the sole reason for baring one's soul. There is no gain – merely the reward of feeling one has contributed something of value, and not wasted life on immaterial self-centred concerns of the modern day world. Speaking for those who cannot speak; writing about topics that most cringe about, laying everything on the table for open and honest discussion, is what we do best. However, I had to laugh as she walked in carrying the identical handbag to mine; I guess we're two of a kind!

Ambassador for Parkinson's - July 19th 2012

I walk very poorly, shuffle my feet and with my back often hunched over as if I am rehearsing a scene from The Hunchback of Nostradamus, this must be far from an appealing look for a 49 year old woman. Appearing confused and forgetful recently, my medications have been adjusted once again, which for any Parkinson's patient is a constant battle of trying to get the optimum dosage right. My life has changed in so many drastic ways since diagnosed with Parkinson's; it's a daily battle trying to cling on to whatever I can of my former self. With numerous changes, I often wonder if my family are able to recognise that I'm still 'me' inside this dilapidated malfunctioning body of mine; the wife and mother who was once so energetic, capable and organised. Today sadly many young people are diagnosed with Parkinson's and the general public are becoming slowly aware that this is not a disease strictly for the older generation. Everywhere I go and everyone I meet is an opportunity to educate and spread the word about Parkinson's. You too can do your part by bringing greater awareness through openly telling your story to those you meet as an ambassador for Parkinson's disease.

Not tonight Josephine! – July 20th 2012

Upon Napoleon declining sex with Empress Josephine, the phrase was coined "Not tonight Josephine"! Poor Napoleon never actually said this, yet it became a well-known phrase, which was in fact originally from a 1915 song. But this would spoil the story, so let's stick to the notion that Napoleon did indeed speak these words to his beloved. Now you may be wondering what on earth has Napoleon and Josephine got to do with Gaucher or Parkinson! I'm sure you are curious, but don't worry I'm getting to the point. Sexual intimacy with one's spouse is an important part of the relationship, and even though one's enthusiasm may dwindle due to medications, excess fatigue, pain, and all the complications involved with suffering a chronic degenerative disease, making the effort to show affection is essential. A relationship needs sustenance in the form of closeness, tenderly understanding each other's needs, despite the difficulties of the situation. You may not be the young energetic limber person you once were; not able to swing from the chandelier or make the next door neighbours think that an earthquake occurred last night, but all is not lost. With a little effort and imagination, some form of romantic intimacy can and should be made. Victoria Wood's rendition of "Let's do it" always makes me laugh, and so if like Napoleon, it's "not tonight!" relax, take a breath and enjoy a little light British humour, that I'm sure will make you smile.

To sleep, perchance to dream - 22nd July 2012

When all are fast asleep in my house and it is the middle of the night, insomnia and pain, like old companions keep me awake and faithfully stay with me till exhaustion finally takes a hold and mercifully I fall asleep. These are lonely hours for anyone in my situation, for you cannot 'ring a friend' at such unsociable hours, and so each minute that tortuously passes by, feels like an eternity. Eventually I succumb to taking pain relief, but this isn't a cure, it merely dulls the throbbing pain. I envy those who get a restful undisturbed full eight hours sleep, waking to greet a new day feeling energised and ready to go. Our bed has been made especially high enabling me to get in and out with ease, and I highly recommend anyone in my situation, making the bed higher. It doesn't take much for a carpenter to add wooden blocks or some other addition to raise the level of the bed, and you'll find this makes quite a difference. The mattress is also an important item that one should not stint on; buying the best possible orthopaedic mattress that feels comfortable and right for you. Silk sheets, as decadent as these might sound, help someone who has difficulty in moving, turn over a little easier in bed. A new day has dawned, the sun is shining, and outside I can hear the birds heralding the morning. Our dog is outside surveying her territory and slowly sounds of life surround me as the world stir's from its slumber and wakes to another day. When ill you learn to appreciate the smallest of things, even something as simple as a good night's sleep!

"I'll have what she's having" - 23rd July 2012

Speaking with others who like me have been suffering the heat this summer, it appears that as one gets older (not that anyone wants to admit it) but the extreme temperature changes, whether they be cold or hot, affect us more now than when we were young. I don't like to be in air conditioning continually that makes me feel half frozen like a popsicle in an ice box, yet no air conditioning in this heat can sap energy leaving one lethargic. At a café I saw a lady thoroughly enjoying a cold beverage, and telling the waiter, as if I was in the well-known film 'When Harry met Sally', the famous line: "Waiter, I'll have what she's having", came to mind. I received a laté coffee, similar to a milk shake but with lots of ice, which on a sweltering hot day, was cooling and easy to swallow. Served in a paper cup with plastic lid, drinking through the straw meant no spillage, despite shaky hands. A perfect Parkinson's beverage! Some months ago we were in an Italian restaurant, and we tucked in to the delicious specialities of the house. A couple sitting at the next table, watching how we were enjoying our meal, pointed to us and told the waiter they'd have the same thing! I guess a picture is worth a thousand words, and speaks so much better than the tempting words on a menu.

Holding a job - July 24th 2012

I've heard many people express reluctance in declaring their health situation, for afraid they will not be hired, or if already employed, once a company learns of a new condition/diagnosis, prejudice and stigma come into play. I have experienced this humiliation first-hand and can understand an employee feeling hesitant to reveal the truth. I remember being told many years ago by an employment agency that I had to declare my health situation during an interview. This was long before I was diagnosed with Parkinson's, however as soon as I mentioned that I had Gaucher disease and I would require one day off work every six months for a check-up in hospital, they did not have to say anything more; I could tell by facial expression alone, as the interview was abruptly brought to an end, I would not be hired. Out of curiosity, I told the truth about my health at four consecutive interviews, receiving the same outcome each time. However, at the fifth interview, I refrained from mentioning Gaucher disease, and was hired immediately and worked at that company for several years. When I needed to go for a hospital check-up, I would take a day off as 'sick leave'. It is a great shame people often are forced to lie about their health status, but until stigma and ignorance have been removed from the work place, I don't think those who are able to work, have much choice. Unfortunately now in poor health, I am unable to work, but am now afforded the luxury of being able to tell the truth. How ironic is that?

Parkinson's poetry - 25th July 2012

I wrote this the other night, and thought I would share it with you.

Parkinson's positive poetry,

Hard for folks to understand,

Constant shaking and twisting,

Resting tremor in my hand.

Hunched, not standing straight,

Ungainly walk, no poise at all,

Gone, my graceful balance,

Unsteady, prone to fall.

Some people feel uncomfortable,

Can't cope, shy away from me,

I'm not contagious, nor insane,

They don't care to stop and see.

The problem doesn't lie with me,

It's completely in their hands,

Whilst keeping a distance,

Their unwitting guilt demands.

It's hard to inform and educate,

Someone who doesn't want to hear,

Afraid of what appears strange,

Ignorance, governed by fear.

Written by Elaine Benton 2012 ©

DBS - July 26th 2012

I have been asked by a number of people if I've had DBS: Deep Brain Stimulation. The answer is "no". This highly invasive procedure is normally only advised once a patient is drug resistant and reached the stage of literally not being able to walk or move. When medications no longer work, then obviously the option of DBS should be looked into. Don't be shy in asking questions and getting other professional opinions. If you can find someone living in your area, or who you can contact via the Internet, who has undergone a DBS recently, it's a good idea to speak to them personally and hear what they have to say on this matter. Speaking with some fellow sufferers who have undergone this operation, it has vastly improved their quality of life. However, there are some serious side effects, and several ladies I have talked with, appear to have problems regarding their speech. If you would like to read about one very brave lady's account of her journey with DBS click on Karyn's blog and read for yourself her personal story.

Live with Intention - July 27th 2012

I heard a saying "Live with Intention" from an amazing woman who is far wiser than her years and could be an example to us all. The more I thought about these three simple words, the depth of their meaning became crystal clear. Most people have a philosophy, viewpoint or code by which they live. My mother used to say: "Don't let the grass grow under your feet" which I believe meant; live your life to the full, make the most out of every day, be responsible for your actions, weigh words carefully, don't gossip, stay true to yourself and to others, and be the best person you can whilst enjoying each moment. Life has its ups and downs, and having Gaucher and Parkinson's is definitely a "downer", but my life has many "ups" too. So I try to concentrate on the "ups" staying positive despite very trying circumstances. Today is Friday, the end of yet another week and I don't know where the days have vanished to. We have a weekend planned with family and friends, so I will "live with intention" and "won't let the grass grow under my feet". Have a good weekend wherever you are and I will leave you with a question; if there was one sentence you could be remembered for, what would it be?

You're worth it \- July 29th 2012

Having been quite unwell of late, I haven't been to the hairdresser in a while. You know when you reach that stage of where your hair appears a mess no matter what you do, and you suddenly just can't stand it a moment longer. Well I had most definitely reached that stage and looking like I'd been pulled through a hedge backwards, decided I couldn't wait one more day. Luckily for me, our hairdresser could see me straight away, and a couple of hours later, I walked out of the salon feeling like a new woman. One's appearance is very important, and no less so when suffering ill health. There is no reason why a disabled person shouldn't look groomed and well dressed. Although this seemingly frivolous maintenance takes a great deal of effort when ill, it is important for one's morale and overall well-being. Even if you can't manage to put make-up on, just a little lipstick can make all the difference. Go ahead and pamper yourself today, whether it's a haircut, or manicure/pedicure; do something for YOU, because you're worth it! I shall have to leave you here, as the nurse has just arrived to give me my Gaucher enzyme replacement therapy administered by I.V. Have a good day everyone!

It's exhausting being ill - July 30th 2012

It's hard enough being chronically ill, not able to work, unintentionally creates additional emotional and financial strains on the family. Every activity centres around the disabled person, having to adapt and make special arrangements. The smallest of outings can end up being a military style organised operation taking into account all the logistics. Just keeping up with medical care, doctors' appointments, hospital visits, ensuring not to run out of medications – the on-going list is endless. On top of all this are other problems such as suitable housing, disabled parking permits, a car large enough for a wheelchair, holiday insurance - problematic if hospitalised within the last six months (laws vary depending on where you live). But suffice it to say, there are many extra things to take into account and attend to, when caring for someone who is chronically ill. Finding out what one's rights are is an important yet exhausting necessity, asking for no more but no less than you are entitled to and receiving appropriate help. Don't be shy in asking for help; if you don't speak up, no one else will.

Coldest call of all – July 31st 2012

Today's blog has nothing to do with illness, but I had to share something with you that happened. Sometimes in our high tech, fast pace business world, people are so focused on making money, they sadly forget their humanity. Everyone receives 'cold calls' which have become common practice all over the world, trying to sell us things we don't want or need. Through the years we have received our fair share of such calls, to which I normally politely end the conversation as quickly as possible. Having lost my mother in March 2012, I was surprised to receive a 'cold call' from a phone company asking to speak to her. I said that my mother had passed away a few months ago and asked what they wanted. The lady on the line, without a moment's pause for breath or hesitation, asked if I would then be interested in a new phone! I was so amazed at the lack of empathy, that I immediately asked the woman if she had heard what I had just said. I was very angry and repeated myself loud and clear, "my mother died a few months ago, and you say nothing except, would I be interested in a new phone?" At this point, the woman understood that she had not only been insensitive, but lacked tact and handled the conversation in a very poor manner. She then had the audacity to put the phone down on me. As if this wasn't enough, to add insult to injury, she phoned back two minutes later, as if the previous call had never taken place, and asked to speak to the owner of the house, to see if I'd be interested in buying a phone! I said to her "you rang two minutes ago asking to speak to my mother, and I told you she passed away a few months ago, and now you're ringing me back to see if I would like a new phone?" Again she put the phone down on me. I have a feeling this saleswoman won't be ringing back! I saw a charming film recently called The Best Exotic Marigold Hotel, starring many wonderful British actors, one of whom is the marvellous Judi Dench. In the film you see Judi Dench giving some young sales people advice how to talk on the phone, and immediately this scene came to mind, for I think the this phone company are badly in need of some lessons, but I doubt that Judi is available!

Climb every mountain - August 1st 2012

Reading about a remarkable man who hit the news with his successful mountain climbing to raise money for the Michael J. Fox Foundation, is truly inspirational. Roger Long was diagnosed at the age of 36 with Parkinson's and is definitely putting up a fight, and refusing to give in. Take a look at Roger's story and see how one man is making a difference, beating all odds whilst bringing greater awareness to this debilitating disease. He says, it's just one step in a journey as he works to conquer a challenge tougher than any mountain. I think we can all relate to that and I'm sure you'd agree that it takes great determination to achieve so much, and I wish him the very best of luck in his future climb of Kilimanjaro. There appear to be no limits where this incredible man is concerned.

What's wrong with you? - August 2nd 2012

When people ask me about my health, wanting to know what's wrong and why I walk with such difficulty – an easy simple answer does not spring to mind. Most people have not heard about Gaucher, being a rare disease with only approximately 10,000 reported cases worldwide. Parkinson's, although without doubt far more common with an estimated 8-9 million sufferers in the world, is still misunderstood and the general conception being that one should be old and shake at all times like a leaf on a tree. However there are approximately only 200 known patients with both diseases in the world - now that's a pretty small number! I never know whether to say Gaucher, to which I am normally met with a bemused expression and find I then have to explain, or to simply say Parkinson's, which everyone has at least heard of, even though they may have a stereotypical picture in their mind to which I do not fit. If I'm in the mood for a lengthy discussion, then I say both diseases, which usually throws a person off guard, making them wish they could immediately retract their question. Sometimes an unsuspecting person can end up receiving a personal lecture, educating them about Gaucher and Parkinson's disease. So beware when asking someone "how are you?" So beware when asking someone "how are you?" for you just might end up getting a lengthy lecture!

A caregiver's dreams - August 3rd 2012

A caregiver needs dreams and goals of their own, especially when caring for a spouse or partner who is disabled or chronically ill. The daily drudgery that envelops a caregiver can quash his/her spirit; hence these daydreams and aims are an important focus, providing necessary respite from the constant demands unwittingly placed upon him/her. Even if the dreams don't evolve into reality, the mere fact that they occupy the caregiver's mind allows necessary escapism. This is a healthy and intrinsic coping tool for anyone whose life has suddenly taken a turn, and the plans that a couple had once made for the future no longer are a reality. In a situation that can feel overwhelming, a caregiver's sanity can be preserved by embracing these dreams, having something to hold onto when everything else seems to be falling apart.

Accepting Diagnosis - August 5th 2012

Diagnosis affects people in different ways. For the sufferer, diagnosis is very personal, and one can understandably be selfish to some degree, consumed with thoughts of symptoms, possible medications and life changing prognosis. The caregiver has a slightly different agenda of worries and concerns, as the unexpected task of 'caring' 24/7 with its additional responsibilities and how the disease will affect daily life of the entire family, can weigh very heavily, and in some cases bring events to a breaking point. Honest and open dialogue between parties is vital, and if necessary a third party such as a social worker or therapist should be brought into the picture. Having a support system in place, such as family and friends, doctors, support groups, and being educated about the disease lightens the load considerably on both sufferer and carer. I think attitude is one of the most important factors for sufferer and caregiver, and both keeping positive, actively making the best out of such circumstances, eases the situation to some degree. Parkinson's or any chronic debilitating disease is something one would never imagine happening to you or your family, and when suddenly slapped in the face with diagnosis, the immense reality of it all comes thundering down. It can be hard to come to terms with, bringing out emotions such as denial, anger, frustration, guilt and knowing life will never be quite the same again. It's not an easy process to go through, but just know you are not alone.

Physiotherapy for Parkinson's – August 6th 2012

As the disease progresses, it is imperative to try and maintain as much mobility as possible; in my case this problem is compounded by having Gaucher disease, and I have to take great care not to damage my hip joints whilst exercising. The physiotherapist aware of these problems has given me a set of exercises especially suited to my needs. Some of them I can do in bed, which ensures that I don't fall, and others sitting on a dining chair next to the table. Waking in the morning my body is extremely stiff, which I am sure anyone with Parkinson's can relate to. Once I have managed to extricate myself from the bed, am washed and dressed, there is a window of a few hours when I am at my best, but as the afternoon wears on and early evening arrives, my condition gets worse, and by the time I crawl into bed, I wonder how I will get through another day. Yet one more disturbed night passes, not just for me, but my long suffering husband who valiantly puts up with my insomnia, and everything else that Parkinson's has thrown at him. Take a look at this link, makes me think all Parkies should take up cycling!

A birthday wish \- August 7th 2012

We always made a big fuss of birthdays in our family, and I continued this tradition once I married and had my own family. There is always a birthday cake, presents and some sort of celebration. My mother having passed away several months ago, I am honouring her wishes by celebrating her "life" and not her "passing". She requested that we do something fun that she would have enjoyed, on her birthday and to think of her. When I was 11 years old, I was hospitalised for two weeks in the summer, during which was my mother's birthday. I remember telling my mother where I had hidden her birthday present, asking her to retrieve it from my bedroom and bring it to the hospital, so that I could give it to her on the day! Today would have been her 93rd birthday, so we are going out, and will have a lovely time and hopefully as we lift our glasses and toast her, she'll be with us in spirit. Happy birthday mum; you lived every moment to the full.

Disabled toilet \- August 8th 2012

I was out with my husband, and needed to use the bathroom. There was one for gentlemen, one for ladies and a separate one for disabled. I opened the door of the disabled bathroom, and although it was spotlessly clean and well maintained, whoever had put the fittings in, had no idea of what disability entails. If you'll forgive me for being graphic, whilst sitting on the toilet, I realised I could not reach the toilet paper. It was awkwardly positioned towards the back of the toilet and even a healthy person would have to twist like a contortionist to reach it. When I washed my hands, the mirror was set so high, that I could not see my face at all. The paper towels were in a metal box with a handle that you turn at the side. The box was also placed incredibly high and just out of my reach. This bathroom was made with the best of intentions, but no experience or thought as to who would actually be using it. I could almost do a survey now on public bathrooms for the disabled, giving star ratings. Unfortunately this particular one rated very poorly indeed!

Parkinson's at work - August 9th 2012

I know of many Parkinson's patients who try to hide their prognosis and continue working to the best of their ability. Any job that entails an amount of stress is going to eventually be detrimental to your health, for this is what Parkinson's loves to feed on best, like a hungry beast; anxiety, stress and worry are its favourite delicacies. If you are able to continue working, try to lower the amount of pressure you are put under during the working day, by maybe delegating certain stressful duties to someone else, or changing roles within the working place (if this is possible). Keeping your diagnosis secret from work colleagues is understandable, for as soon as the cat is out of the bag, those who are ignorant, simply don't understand what Parkinson's is, and will suddenly look at you and treat you differently. However, being upfront and honest about one's condition is the best route. You can't hide Parkinson's, or pretend it doesn't bother or interfere with your life. Don't let anyone crush your spirit; thoughtless comments and ill-chosen words can really hurt and shake one's confidence. But try not to take these things to heart for they are at fault and NOT YOU!

Penalised for Gaucher & Parkinson's – August 10th 2012

I have no life insurance, being refused on the grounds of having Gaucher and Parkinson's, so find I'm in the strange situation of being worth more alive than dead! What a comforting thought to know that insurance companies have such a dismal prediction for my future, and consider me too high a risk. A bizarrely reassuring thought, that they are the only ones who have been so brutally honest as to acknowledge my grim prognosis. How many other diseases are also put in this category where no company is willing to issue a life insurance policy? Understandably in my family, we do not have a good track record, (three of us with Gaucher and Parkinson's – my father and brother already having passed away) but is this enough to give insurance companies the right to refuse me a policy? Normally insurance companies are only too ready and eager to take money each month from anyone willing to sign on the dotted line, but clearly they have drawn the line somewhere else in my case, for I have been categorically refused. Not having a life insurance policy can cause problems when requesting a mortgage, and as soon as this topic arises, the banks decline any prospect of getting a mortgage. I'm sure if one was to work out the statistics and projected forecast, it is far more likely to die in a car accident than from Gaucher and Parkinson's!

Bob Hoskins - 12th August 2012

Today's blog is dedicated to a great actor: Bob Hoskins. I was saddened to hear that British born Bob Hoskins who stole the nation's heart, brightened our screens with his marvellous talent for many years, has been diagnosed with Parkinson's disease. The entertainment industry has lost an exceptional amazing actor who has made us laugh, and believe in the characters he has portrayed over his long and successful career. I don't think I missed a single film that he starred in, capturing us with his cheeky laugh and smile, and that deliciously naughty twinkle in his eyes. I'm sure you all join me in wishing Bob and his family well, and to thank him for all the joy he brought into our lives through his craft. There will always be only one Bob Hoskins.

Dreams - 13th August 2012

As I sit here writing today's blog this morning, our dog is fast asleep at my feet, and must be dreaming of something good for her tail is wagging back and forth. I wonder what a dog dreams about. Could she be dreaming about a juicy steak or bone; maybe finally catching the cat who teasingly runs through our garden at such speed, I doubt even a greyhound would be fast enough to catch her. Looking at her wagging tail, whatever she is dreaming about must be good! I seldom remember my dreams now, and wonder if this is due to the Parkinson's medications, or does this mean I never reach that deep REM stage of sleep where dreams occur. This could well be due to the disturbed nights that most Parkinson's patients suffer from. When I was first diagnosed with Parkinson's I would have the most vivid terrifying dreams that were really disturbing – I could have given some very interesting ideas and material to Tim Burton for one of his forthcoming dark films that he is so famous for. My neurologist advised me taking Clonex (generic name: Clonazepam) at night just before bed time, and thankfully this has dispelled these unpleasant dreams. Most mammals show signs of reaching deep sleep entering the REM stage, meaning they must dream about something. If only my dog could talk, I'm sure we'd have the most fascinating conversations, and I would learn what it is that she dreams about.

Sharing information - 14th August 2012

With the help of the Internet, the world has become a far smaller place, and through Facebook and e-mail, Parkinson's sufferers have made a global family of sorts, sharing information and helping support one another. A site that gives clear and simple directions for physical exercises suitable for PD patients, that one can do in the privacy of one's own home is the Parkinson's Society Canada. Obviously all their suggestions may not be suitable for everyone, but it's well worth a look at. I know in the U.S.A. there are dancing classes for PD patients, and how I wish I could attend those classes. I used to love to dance; in particular ballroom dancing was very popular in England when I was growing up. It was an exhilarating feeling, wearing a swirling chiffon dress that would swish with every move I'd make, and standing poised, in the arms of your partner, as the music began and around the dance floor one would magically be twirled to the timeless Waltz, Foxtrot, Rumba and my favourite; the dramatic captivating Tango! Unfortunately my dancing days are over, and my ungainly jig is for restricted viewing only (in my kitchen with close family and friends), but if I close my eyes tight and listen to the music of days gone by, I can almost see myself as sixteen once more, with lightness of step, poised and graceful, head lifted high; dancing my way around the ballroom.

Julia Child's birthday – August 15th 2012

Today would have been Julia Child's 100th birthday. She was one of the first popular American TV chefs, who developed a penchant for French cuisine whilst living in France in 1948 and literally changed how Americans cooked. Julia Child's published book was a best seller: "Mastering the Art of French Cooking" and the first of many more which are still referred to today; a testimony of her great success. She had a television show and became one of the world's most famous chefs, receiving France's highest honour the Legion d'Honneur. A film was made in 2009 called "Julie & Julia" starring Meryl Street and Amy Adams which was based on a cooking blog by Julie Powell. I have watched this charming film again and again, appealing to me as I love to cook, and when having a bad day, in pain, and need some distraction, a film like this takes my mind off things and I become engrossed in a delightful story. So tonight I will make something special for dinner in honour of Julia's birthday – and as she would always say at the end of her programme's "Bon appétit!"

Parkinson's Poetic Progression - 16th August 2012

Progression

Can't slow the progression, although I have tried,

Lifelong buddies, Gaucher and Parky by my side.

The journey of life, comes into view,

How you live each day, depends solely on you.

What you give others will return tenfold,

Kindness and empathy, have courage, be bold.

The road I travel, where will it lead?

Destiny awaits, beckons at speed,

Down a strange path, being led by fate,

Far bigger than me, can't stop or wait.

Grabbing tight, I hold on for the ride,

A runaway train, down tracks I slide,

All aboard, not sure what's in store,

I'm a passenger on a mystery tour.

Written by Elaine Benton 2012©

My latest book \- 17th August 2012

Thanks to Parkinson's "gift" of insomnia, 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: "Life's Silver Lining". This book is not a collection of poems, but a story where I reveal events that have occurred in my life, growing up with Gaucher, and dealing with 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, hopefully bringing a smile to your face and possibly making you laugh. My latest book is in the process of being proofread and as soon as it is ready, it will be available on Amazon. I will keep you posted. Have a good weekend!

Hydrotherapy - 19th August 2012

Having taken a hydrotherapy course some time ago, I can highly recommend the benefits that this particular form of physiotherapy can offer. One's body weight being suspended in the water, preventing any injury to delicate joints or limbs, it certainly suites someone like me who has additional problems to Parkinson's. I attended a course of twelve sessions, joining a small number of people in the group, no more than six. The pool heated to a very comfortable warm temperature; non slip tiles surrounded the pool, railings and steps leading safely down into the hygienic chlorinated water. Fortunately having no sense of smell due to Parkinson's, I couldn't smell the high amount of chlorine, but others found it rather strong. The instructor entered the water with us, and gave each person individual exercises to do according to one's abilities and needs. The only problem with these sessions was getting undressed and even more difficult dressing afterwards when still damp. Having someone to go with me would have been ideal, as I really needed assistance, but this was difficult to arrange. If you haven't tried hydrotherapy, and are entitled to a course through your healthcare fund, give it a try, and if you have a member of the family or a close friend who has the time and patience to take you, even better.

Patient helps Caregiver - August 20th 2012

If your partner (caregiver) doesn't want to talk, appearing to clam up, this doesn't mean they are ignoring you or the problem of Parkinson's. You may find that your carer needs "time out", to withdraw in order to process information and the constant changing situation of your lives. Sometimes pushing and insisting "we need to talk" can be counterproductive and a need for patience, stepping back a little, allowing them in their own time to open up and talk makes for a much less pressurised situation. Watching a loved one caring for you is painful and one can feel ridden with guilt. Ultimately this can take a toll on you, so staying positive is one of the best ways you can help your caregiver's situation. I can't imagine how it must feel standing in my husband's shoes, watching the vibrant young energetic woman he once married, slowly metamorphoses into a mere shadow of the person he fell in love with. Yet my remarkable husband remains steadfast by my side, doing all he can to make our lives the best they can be.

Pets for Parkinson's – August 21st 2012

Caring for a pet is known to be highly beneficial, boosting ones wellbeing, both mentally and physically, and is well worth the investment of responsibility and additional financial expenses. Blood pressure and stress levels are lowered significantly and a calming effect can be experienced by taking care of a pet. A dog in particular is a good choice, for a certain amount of simple training can bring great enjoyment to both owner and dog creating a special bond that is not possible with other pets. Dogs have the uncanny inbuilt instincts to know when their owner is not well, or in pain and stressed, and having a dog simply responding to your mood gives one a good feeling. If you are well enough to take a dog for a walk, the immense pleasure not to mention the physical benefits of walking can help maintain or even improve your health. There is also the added bonus of meeting and talking with other people, as a dog is often a 'social ambassador' of sorts allowing you the opportunity to interact with other people that you may not have normally been able to. Playing with your four legged friend can boost 'feel good' chemicals in your brain such as serotonin and dopamine (very important to Parkinson's patients!). So maybe this is why "man's best friend is a dog"!

Lost but not forgotten - August 22nd 2012

Losing someone dear, whether due to illness, an accident or old age is one of the hardest things we have to deal with in life. Everyone has their own individual path of grief to follow. There are no set rules for bereavement, no time limits, and no one has the right to judge another regarding this very personal issue, that sadly at one time or another we all go through. I hated the trite saying "time heals", for it sounds so clichéd, but as the years have passed, and having lost close members of my family and friends, this overused saying does bear some truth. With the passing of time, a degree of raw sharp pain lessens; the overwhelming ache in one's heart is bearable and talking and reminiscing without choking up becomes possible. I don't think one ever forgets or stops missing a loved one – they were, and always will be part of your life. Today is the memorial of one of my brothers who died 16 years ago. Not a single day passes, that he doesn't enter my thoughts; he is forever engraved upon my heart.

Helpful ideas - August 23rd 2012

I was handed a pen the other day, a little ugly being rather thick and chunky with a nasty rubberised coating. As ungainly and child-like in its appearance, it was surprisingly very comfortable to hold and made signing my name much easier. I will now be on the lookout for similar pens. This made me think of my toothbrush which is thin and elegant making it difficult to hold. Replacing it with a rather fat robust handled toothbrush again makes things just a little easier. We were choosing a new tap for the kitchen, and the fashion here at the moment is extremely modern, almost futuristic with a tiny thin spindle to turn the tap on and off. Immediately seeing this, I remembered the advantages of having a thick pen and toothbrush and asked the sales assistant for a more robust thicker handle. With a look of disapproval he hastily told me those were out of fashion, but when I explained I had Parkinson's and why I needed a chunky robust lever to turn the tap on and off, he showed us last year's models which were perfect. It's amazing how these little things can make a difference. If anyone has other ideas or suggestions, please do let me know, and then we can all share this helpful information.

"Go Anyway" - August 24th 2012

I spent my youth growing up around boats and sailing was a huge part of my life. Never having suffered from sea sickness, I was surprised that all these years later, the slightest pitching or rolling of the boat and my lack of balance due to Parkinson's; I turn a nasty shade of green. Travel pills are not compatible with Parkinson's medication and so I have tried various other remedies, munching on dry crackers, sipping Coca-Cola, chewing crystallised dried ginger, wearing wrist bands with pressure points – none of which unfortunately helped. We all have a story to tell, I have been in contact with many people, who like myself, live with chronic disease, yet have an unbreakable fighting spirit and a sense of humour. I was therefore intrigued to hear of a book written by Lyn Foley entitled: "Go Anyway" which is her story of sailing around the world with her husband who was diagnosed with Parkinson's. A remarkable story of courage and determination about a couple who despite adversity completed what they set out to do. I think there's a little "explorer" and sense of adventure in us all, but some are brave enough to do more than fantasise, and I applaud the Foley's tenacity in fulfilling their dreams.

Welcome back Michael J. Fox - August 26th 2012

The actor, Michael J. Fox, was diagnosed in 1991 at the age of 29 with Parkinson's, and became a staunch activist in bringing this lousy disease into the public's eye. Michal created the Michael J. Fox Foundation which has over the years raised millions towards research and development in finding better medicines and ultimately a cure. As a celebrity who everyone adored, this gave him the ability of bringing Parkinson's to the forefront of the world's stage. What great news to hear that Michael is returning to work and will be appearing in a new NBC comedy, playing none other than the part of a family man with Parkinson's. Who more fitting could portray such a role? Unlike most actors, sadly Michael doesn't have to spend hours researching or getting into character, as he unfortunately has many years under his belt preparing him for this very task. Through this series, the general public will become more aware of what it means to live with Parkinson's – and what better medium than television, staring a well-loved actor that we have long missed seeing on our screens. Welcome back Michael !

Masked expression - August 27th 2012

It was Pankaj Gandhi who said: "The prettiest smiles, hides the deepest secrets. The prettiest eyes have cried the most tears, and the kindest hearts have felt the most pain." A smile is often the first thing one notices about a person, it can be the first sign of greeting or initial impression. I have felt for some time that my expression has started to freeze; mask-like on occasion and smiling now comes less natural. I used to continually have a big smile on my face, and although I still feel like I'm smiling, often no one else can see. Someone commented on the fact that I appear to be smiling less, and this is not due to feeling down or sad, simply that the muscles in my face are not responding as they used to. Losing my smile is a big loss to me, and whilst talking in a room full of strangers the other day, I felt acutely aware that my expression was frozen. People who do not understand this symptom of Parkinson's might think that I am cold, unsympathetic or disinterested in what they are saying, but what they don't understand is that under this masked expression, there is a huge beaming smile deep within me. I spotted a woman the other day and immediately recognised the classic Parkinson's shuffle, non-swinging arms, resting tremor and frozen masked expression. As I neared her, we made eye contact, simultaneously realising that we were both taunted by Parkinson's. Being part of this special group, a member of a growing fraternity where we have our own special 'handshake' (forgive my pun) and are members for life. There is no membership fee, no initiation ritual or secret ceremonies; just a diagnosis.

Remaining Optimistic - August 28th 2012

**Winston Churchill once said; "A pessimist sees the difficulty in every opportunity but an optimist sees the opportunity in every difficulty". Staying positive is crucial to one's well-being when suffering any illness or disability, and naturally for those in the difficult position of being a caregiver. Having played the role of caregiver to my mother for several years (who had dementia) before she passed away, I am now on the receiving end of being cared for by my husband. The tables have turned, and I can't say that I liked being a caregiver then, or now the position of needing to be cared for. Both stink! But that's life, and one rarely has the choice, as these life changing circumstances are thrust upon us at full throttle, barely leaving one time to think let alone breathe. I am glad one can't predict the future in a crystal ball, for I doubt any of us could imagine being able to make it through the hard times and cope with all that life holds in store. This insight would be too much for anyone to cope with. I'd much prefer to take one day at a time, make it over each hurdle as they appear, and deal with problems as they arise.**

Narrative Medicine is spreading - August 29th 2012

Narrative medicine is becoming a popular and recognised important tool in medical practice. Now taught in many medical schools as a regular part of the syllabus, this welcome addition helps doctors and patients alike. Seeing the entire picture/story of the patient is much more helpful in ensuring a correct quick diagnosis and applying the best treatment plan. When there is a piece of the puzzle/story missing, the task becomes much harder for the doctor or medical team taking care of you. Withholding information because you think it bears no relevance or is simply too personal or embarrassing could be detrimental. I don't think there is much, a well-seasoned doctor hasn't heard before, and you'd be challenged I'm sure to find something that would truly shock a physician. Should you happen to receive a fresh new green, straight out of medical school doctor taking care of you, just think of the learning opportunity you are giving him/her. So next time you are at a doctor's appointment, don't hold back; spill the beans, tell your whole story.

A frequent question - August 30th 2012

I am frequently asked: "Have you made money from your books?" When someone asks me this, I try to explain what most are not aware of. The publishing world has changed enormously in recent years, mainly due to the Internet and e-books, along with the ability of self-publishing. Today there are very few lucky authors who actually make a living from writing books. I have sold hundreds of paperback books and e-books, but so far have not covered my expenses. I don't write to make money; I write because I love to write and feel I have something of worth to contribute. This is why I often refer to what I am doing as more of a 'campaign' or 'project' that I gladly take on as a voluntary basis; but believe me it costs a great deal to be a volunteer. The expenses mount up; a domain/ website, blog, professional proofreading, copyright protection, paying in advance to print paper back copies, envelopes and postage, in addition to the times I have public speaking engagements and my husband takes time off work to ferry me to the venue and bring me home again. I do not get paid for public speaking, which is fine as I am happy and willing, seeing this as an opportunity to spread the word and create greater awareness. I am kept occupied by spending hours writing a blog each day and replying to those who write to me privately. What I do receive is invaluable and worth far more than any currency; the feeling of having purpose in my life, and the support I offer others, I have received wonderful support in return. A priceless gift I had not expected and thank you. I don't know how long I can continue writing, but as long as I'm able to, I'll be right here.

Self-medicating \- August 31st 2012

Today I want to talk about self-medicating, and must remind you that I am speaking as a patient; I am not a doctor! Although as chronic patients we often recognise instinctively when something is wrong; know much about the disease from which we are suffering, thanks to easy Internet access of information, and as I have said before, "you know your body better than anyone." However, I can't stress enough – DO NOT SELF-MEDICATE. No matter how well you think you know your health status, the medications you are on, and how you actually feel, this does not give you the wealth of experience and knowledge of a professional doctor. I can't say it any plainer; it is HIGHLY DANGEROUS to stop taking or alter dosage of medications without first consulting your doctor. Parkinson's medications need to be finely tuned, and admittedly much patience is needed on our part until the doctor has found the right combination of pills, the correct dose and various time intervals between drugs. Messing around and thinking that you know best or can do better by yourself, can lead to serious ramifications. I have the utmost faith and confidence in my doctors, and value their advice and opinions. If you are unsatisfied with your doctor, then see if you can change to a different doctor. I do not talk lightly on this matter, so please take heed. DO NOT SELF-MEDICATE!

Even I have bad days – September 2nd 2012

When you hear the name 'Parkinson's' most people envisage shaking, but don't realise how debilitating and degenerative this disease is. I have a tremendous fighting spirit and try to stay positive most of the time, but when I can see and feel myself deteriorating, I have to summon up every ounce of determination to battle on. I spent the day yesterday trying to do a little sewing on my machine, but was not very successful. I'm no longer able to machine or cut fabric straight now. I was pretty upset at my poor efforts and inability to do something that I used to love and excel at. One more thing is being taken away from me. How I wish they'd hurry up and find a cure for this rotten disease before it's too late. I fantasise about just waking up one morning and magically discovering that during the night Parkinson's just disappeared - vanished into thin air! How I long to have the energy and ability to competently run my household taking care of my family as I once did, and go for long walks around the forest with our dog by my side. I want my life back; to turn the hands back on the clock as I try to cling on to some semblance of a normal life and yet like sand in my hand, I find it's slipping away between my fingers. With chronic illness, there are good days and bad days. Today is not a good day, but maybe tomorrow will be better!

Slowly all the things I liked and found fun,

Are being stolen away, one by one.

Hobbies and activities I used to enjoy,

Skills and abilities once able to employ.

Parkinson's the thief, crept into my life,

Causing great chaos, havoc and strife.

Constant change, as the disease winds its way,

Through every facet of my life each day.

Remaining positive and cheerful I do my best,

As this horrendous malady puts me to the test.

Although today was bad, I'll not let it win,

I'll find my 'happy gene' that I hold within.

Written by Elaine Benton © 2012

Today is a new day - September 3rd 2012

After my 'pity party' yesterday, where I allowed Parkinson's to get the better of me, I have pulled myself together. We all have good and bad days, and hopefully more good than bad. It has been my intention from the very beginning of writing this blog that I speak honestly and share everything with you. There is little point in me telling you all is fine and dandy and painting a false rosy picture. It is unrealistic for anyone to stay cheerful every minute of every day - it is not possible - not even for me, the eternal optimist. This is not what you want to hear, and I believe you deserve the truth about how it is to live with chronic disease. However, today is a new day and "I'm back" in full force! You can't keep me down for long, and this morning up at the crack of dawn, full of vigour and spirit I wrote the following poem.

Parkinson's a hungry scavenger appears,

Feeds upon worry, anxiety and fears.

Speeds up and takes over, if you give it half the chance,

Any invitation; quick as a flash will advance.

Don't give in and don't give up; stay strong,

Keep cheerful and positive all day long.

Fight with all your strength and might,

Clad yourself in armour, battle and fight.

This is a war I'm determined to win,

Despite the odds looking rather slim.

Parkinson's will not triumph; it's got it wrong,

We'll beat it together, in numbers we are strong!

Written by Elaine Benton © 2012

The Intima Journal - September 4th 2012

The Intima On-Line Journal is a wonderful source of information relating to narrative medicine which was started by students in The Narrative Medicine Master's Program at Columbia University. As a result of their studies, this journal was created and covers a wide range of self-expression between patient and doctor. I have written a short piece for their magazine and if you'd like to take a look, click on this link: The Intima. Narrative medicine is fast becoming a hot topic, and the realisation of its full potential could very well change the ways of future medical practice. Many doctors, who are truly skilled and dedicated, automatically use these techniques without even realising, which in my mind is a sign of a great doctor. Through observation much information can be gleaned, and to a trained eye, and a listening ear, in a matter of minutes a skilled doctor armed with this additional information can make a speedier diagnosis, and if a referral to a specialist is required, precious time is not wasted. In a limited time frame this is probably all that is possible, but listening to a patient's entire story takes time and patience, and this is where a written narrative comes into its own. My book "Parkinson's, shaken, not stirred" does exactly this, covering most topics related to living with chronic disease. I specifically made it a short book, enabling the reader to quickly read all the poems within, depicting what I go through both physically and emotionally, which in a sense is the essence of narrative medicine. I specifically made it a short book, enabling the reader to quickly read all the poems within, depicting what I go through both physically and emotionally, which in a sense is the essence of narrative medicine. I explain all, that there is no time for an in-depth patient / doctor dialogue during an average appointment, due to time restraints, which we all know is often as short as ten minutes. For those who have read my book or daily blog, you will have a fairly clear picture of my situation which I suspect many patients can relate to around the world who find themselves in similar situations.

Shocking the neighbour - September 5th 2012

I had ventured outside, feeling the sun on my face and warming my aching bones; I decided to sit on a bench, just meters from our front door. A neighbour I have not seen for some time happened to be walking towards me; staring at me with a quizzical look on her face, and without thinking raised her hand to cover her gaping mouth as her eyes opened wide suddenly realising it was me. Have I changed that much in the last few months? I thought not, but seeing her shocked expression, gave me the distinct feeling that I do look different. We all age, none of us can stop the passing of time, and I believe the fountain of youth has yet to be discovered. As for all those anti-wrinkle creams – well Mother Nature must be having a good laugh at us ladies who purchase these products with the belief that they'll actually work. But let's be honest, chronic disease does take its toll, and needless to say those who don't see me on a regular basis are bound to notice changes. To cover her uncomfortable slip-up, I quickly said "hello" and asked how she and her family was. Before she answered me, she leant forward and touched the sleeve of my T-shirt, pointing out that I was wearing it inside out! So now I am left wondering, was she shocked at how I look, or at the fact I had my top on inside out. Maybe it was both; I guess I'll never know. The moral to this story, is to have a mirror on the wall by the front door, so that you can take a quick look just before you step outside!

An entire year \- September 6th 2012

This past year has been a journey of sorts and it is an exactly 12 months since I began writing this blog on 6th September 2011, with the purpose of offering support and comfort to fellow sufferers and caregivers or anyone going through difficult health issues. Talking candidly and honestly I hope I have made you smile, helped in some small way, so that you realise you are not alone. Keep positive, and never give up the fight. I hope and pray that a cure is not too far away. My intention has been to reach those who for whatever reason are not able, or do not have access to join a support group. Knowing you are not alone in your daily struggles with a debilitating disease is important to us all. What I never realised when reaching out and getting people's attention worldwide, surprisingly like a boomerang, I would receive support in return. I am truly thankful to all who have read my blog and made contact with me. Your presence, be it through a computer screen, has been felt, appreciated and indeed an unexpected wonderful gift. Thank you!

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

http://elainebenton.blogspot.com
