Secret handshake

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

Reaching out

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

Why me?

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

Stigma

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

‘Tell me a Story’

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

Inspiring

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

Hospital Check-up

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

Getting older

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

A comfortable bed

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

Goat Farm

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

Parkinson's global family

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

Throwaway society

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

The House of Commons

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

A magical product

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

Bathroom washbasin

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

Shop service

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

Top marks to Primark

Visiting a branch of the clothing store "Primark" in Ealing/London, I was astonished to find they had a changing room designed by someone professional, understanding the special needs of a disabled shopper. Not only was the cubicle spacious enough to enter in one's wheelchair, but there was plenty of room for two other people, a permanent secured seat at the same height as a standard wheelchair with bars conveniently positioned on the walls. Large full length mirrors placed on two walls enabling easy viewing; hooks on the walls and the most helpful staff. Other stores could learn much from a visit to this store to see what should be common place in all department stores. Understandably smaller independent shops may not have the necessary area to designate such a large space for disabled persons, but large stores have no excuse. Shopping for clothes when disabled is exhausting and very difficult, so any help, such as thoughtfully designed changing rooms is something very much appreciated.

Who doesn’t love honey?

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

Public speaking in London

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

Talk in London

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

Sibling similarity

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

Book for Caregivers

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

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

• Reduce personal stress
• Communicate effectively with family members, doctors, and paid help
• Practice self-care
• Reduce guilt, anger, and depression
• Experience relaxation techniques
• Make tough decisions
• Set goals and problem solve

http://www.powerfultoolsforcaregivers.org/book-store/

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

Counting sheep

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

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

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

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

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

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

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

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

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

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

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

Written by Elaine Benton © 2011

"A Silver Lining"

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

It’s not what you say

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

Gardening therapy

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

Living conditions

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

Parkinson’s puts you to the test

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