About me

I have been writing poetry and stories since I was a child, and a love of reading was instilled in me from an early age. I am passionate about writing, and hope you enjoy the books I have written. Whilst most of you sleep soundly in your beds, like many Parkinson’s patients, insomnia dictates, so during those hours that sleep eludes me, the house is tranquil and quiet, an atmosphere perfect to immerse myself in writing. My life has been a series of strange events, which have without doubt contributed to my creativity. To publish anything is to bear one’s soul to the world. It is to stand naked and let everyone see who you really are. I have poured my heart and soul out on paper and I hope to share this journey, immersing you in a story, capturing your attention and firing the imagination. Through my writing and public speaking I hope to bring greater awareness to the general public about living with chronic disease.

Friday, May 31, 2013

P is for Parkinson

P is for "Parkinson's, what else could it be?"
A is for "Appreciate the good in all you see"
R is for "Refusing to give up the fight"
K is for "Kindness when hearing your plight"
I is for "If only they'd hurry and a cure were in sight"
N is for "None understand unless in your shoes, that's for sure"
S is for "Sorry my husband  has to deal with so much more"
O is for "Oops, did I drop that and make such a mess?"
N is for "Never ever give up hope - I'm an optimist I confess!"

If you'd like a look at my latest article about medical tests and examinations written of course with a touch of British dry humour, click on this link to The Huffington Post. Have an enjoyable weekend, do something you find fun and laugh; don't forget that laughter is the best medicine!

Thursday, May 30, 2013

My life is an open book

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

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

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

Wednesday, May 29, 2013

Warning - pay attention!

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

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

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

Tuesday, May 28, 2013

Being inspired

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

Monday, May 27, 2013

Turning 50

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

Sunday, May 26, 2013

Why is today special?

What does John Wayne, Stevie Nicks, Helena Bonham Carter and one of my nephews have in common with me? This is not a trick question, and thankfully Parkinson is not the answer. I'm not going to drive you crazy trying to work it out. What we share, is the same birthday - the 26th May, be it different years. 

It's been quite a journey, but I've made it to my 50th birthday, and although my body feels like it's ancient and falling apart at the seams, inside my spirit remains strong and youthful. Within this failing shell, is a vibrant young woman who wants to dance the night away in the arms of her husband, run along the beach at the water's edge, stay up all night and watch the sunrise, jump carefree into a swimming pool, take a long walk in the forest with the dog, or go on a mammoth shopping spree with her daughter. These simple pleasures in life are no longer within my reach, but I am content and accept my circumstances and limitations. I may have lost many things, but I am lucky enough to be surrounded by loving caring family and friends, whose constant unwavering support keep me going.

I don’t know what the coming year holds in store for me, but I think my journey is far from over. Maybe this is merely the beginning of another chapter in my life. I have been writing this daily blog since September 2011, which is now read in over 70 countries around the world. I shall continue to take you, my readers, along with me, so stay with me, for you never know where it may lead. Surrounded by pink roses from my darling, and the warmth and love of those around me I definitely feel in the pink today.  I feel good!

Friday, May 24, 2013

Don't waste a moment

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

Thursday, May 23, 2013


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

Wednesday, May 22, 2013

Everyone needs a hug

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

Tuesday, May 21, 2013

How to clean the floor

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

1 glass bottle of beer (any beer will do)
1 bucket of water and floor cleaning liquid
1 mop and 1 willing daughter

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

Monday, May 20, 2013

Michael J. Fox returns

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

Sunday, May 19, 2013

Domino effect

It’s all a matter of how you look at life and see everything. Two people can be in the same situation but both have very different perspectives. Being able to look at the glass half full instead of half empty isn't always easy to do, but if you make a concerted effort and change your mind-set, with determination you can push negativity away and replace it with positive thoughts. Like a domino effect or the ripples on a pond that circle ever outward, you and everything surrounding, will be effected. Ultimately this makes it easier to cope with the harsh things we often have to deal with in life. 

My husband has a saying; "problems don't exist, only solutions exist". Whenever we have come up against an obstacle in life, we always find a way around it. Whether you suffer from ill health or not, having a positive attitude can only enrich one's character and give you the tools to cope with anything thrown your way. I am constantly challenged as my health deteriorates, and although there are occasions when I feel down, the majority of the time I am still able to count my blessings and see the silver lining in all this chaos. So if you're feeling down in the dumps, make an assertive effort to be optimistic and once you've knocked that first domino down - you'll find the rest will follow.

Friday, May 17, 2013

Loss of Independence

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

Thursday, May 16, 2013

Meds on time

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

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

Wednesday, May 15, 2013

Slow like a tortoise

Years ago I used to be a very fast typist, but as Parkinson's progresses, my speed is slowing down considerably. My right arm has become extremely painful for the last few days, making it even harder than usual to accomplish anything. Whether this is down to Parkinson's or Gaucher - who knows! However, it has rendered me to typing with one finger on my left hand, which is the side of my body most affected by Parkinson's. Doing things with just one hand is very difficult, and time consuming, but like the famous tale of the tortoise and the hare, I may be slow, but I'll get there in the end. 

It's not my life that is complicated, its just my health that is complex. Anyone suffering more than one disease will no doubt find that there are many symptoms that overlap, and often cloud the issue, making it hard to distinguish what exactly is manifesting itself. I feel like a car that is long over due for a good service and overhaul. I wish it were that easy. When my car had a puncture, it was fixed that same day, old worn tyres were replaced with new ones, when a light bulb goes, a new one is put in its place. At the back of the garage there was a sign that said "Body Workshop" - I smiled to myself, imagining for one moment some space age scenario where you could walk into a machine and at a flip of a switch all one's medical problems would be sorted. Now how cool would that be? But from all the banging and  noise emanating from the "Body Workshop" I was quickly brought back to reality and it was clear that only cars were behind those closed doors. I will bid you farewell for today, as I can't write any more - my one finger is getting tired of typing! 

Tuesday, May 14, 2013

A moment of despair

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

A Beacon

I once was a shining beacon,
For all the ships at sea.
My light was bright and ever shone,
A full life awaited me.

But now my light is fading,
It flickers and splutters by day,
At night can barely be seen,
As it meekly fades away.

A tiny ember where a flame once burst,
Sadly now all remains to see,
One day a gust of wind will blow,
Snuff out the light and set me free.

Written by Elaine Benton© 2013

Monday, May 13, 2013

Marking the years

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

Sunday, May 12, 2013

What day is today?

I had a good laugh with a friend the other day, as we talked about not knowing what day it is. Now if she happens to be reading this, she'll be thinking "Oh no, Elaine's writing about me". Don't worry - your identity remains secret! 

When one doesn't work and is housebound, the days can run into one another, and on occasion, I must admit, I don't know what day of the week it is. Apparently I am not alone, as I found others have the same difficulty, but without the excuse of having Parkinson's and being at home with no particular schedule. Maybe that's why I write a daily blog; just so I'll know what day it is! No, I only jest. My wrist watch has the date on it, but with poor eyesight, I can no longer see the date. Thank goodness the date is a little larger and clearer on my mobile phone and computer. In a local retirement home, I noticed in the day room, a large board with the day of the week, date, month and year clearly displayed. The staff pay attention to change this board every morning which I'm sure is of great help to the residents. 

The hospital I attend have large wall clocks in each ward, but no date. Perhaps if and when they need to replace these clocks, they could purchase something that not only tells the time but the date too. Being hospitalised, and completely thrown out of one's normal routine, understandably one hasn't a clue what day it is, and often without my watch, phone or computer, I am quite lost, especially if it's a long hospital stay. 

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

Friday, May 10, 2013

No energy

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

My latest article for The Huffington Post has just gone up on-line if you'd like to take a look.

Wishing you all good health and an enjoyable restful weekend.

Thursday, May 9, 2013

Do loved ones really understand?

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

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

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

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

Wednesday, May 8, 2013

A fabulous invention

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

Tuesday, May 7, 2013

Bad memory

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

Monday, May 6, 2013


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

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

Sunday, May 5, 2013

Curling toes

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

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

My latest HuffingtonPost article about 'Sexuality and Disability' is now up on-line if you'd like to take a look.

Friday, May 3, 2013

Life is what you make it

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

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

Thursday, May 2, 2013

Parking Angel

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

Wednesday, May 1, 2013

May Day

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

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