About me

PROFILE:
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, February 16, 2018

Blogging Again!

I stopped blogging for the simple reason, I was deteriorating at such an alarming speed, I thought who in their right mind would want to read this? Who would want to know what I was going through – not really living, but hanging on by my fingernails, surviving each painful long day and suffering hellish nights I thought would never end. My body no longer responded to my medications and Parkinson’s had turned into an unpredictable demon, sapping my energy and causing pain that ravished my body. Doctors and nurses had seen all-consuming pain and suffering in Cancer patients and other chronic disorders but had never treated a woman in her fifties with Parkinson’s and Gaucher in such a terrible advanced state. If there were such a thing as a ‘pain scale’, my reading would have been way off the charts.

I used to be a very fast typist, but now use one finger so it takes forever to type even the shortest of blogs. So please be patient as I recount the events that took place. What I will be writing is without doubt disturbing, and may be hard for you to read, but I urge you to read on, for there is a lot of information, should you need it that could prove helpful. I would like to remind you that I am not a doctor or have any medical training. I am merely a patient sharing my experiences and story with you.

I never really questioned anyone what the difference was between a 'Neurologist'  and a 'Neurological Movement Disorder Specialist'. The term "movement disorders" refers to a group of nervous system (neurological) conditions that cause abnormal increased movements, which may be voluntary or involuntary. A movement disorder specialist is a neurologist who has received additional training in Parkinson's disease (PD) and other movement disorders including Essential tremor  (ET), dystonia, tics and tremors. 

I had been going for 11 years to the same neurologist, who is highly regarded. It had never occurred to me that perhaps I should get a second opinion from a 'Neurological Movement Disorder Specialist'. You may be thinking “Well I know that” and in hindsight, I don’t know why this option was never explored. Foolish as I may now seem, to have not inquired before, all I can say is “better late than never”. So, if you too, have not been seen by a Neurological Movement Disorder Specialist, it may be worth your while checking this out. You have nothing to lose and everything to gain.

My father who was a carrier of Gaucher disease, had PD. I also had a brother, who like myself, suffered from Gaucher disease and PD who died a few years ago. From the time of diagnosis, my father and brother went downhill and passed away at an alarming speed, not only was this a shock to the family, but also the doctors. Although my family medical history did not bode well, I strongly believed my case would be different. My father and brother were pessimistic by nature, seeing the glass half empty, where as I am a very different character, always positive who sees the cup half full. I strongly believe that one’s outlook on life can have a remarkable effect on the severity and speed of progression.

My husband has made coffee and beckoning me to the table, so I'll leave you for now and wish you good health and an enjoyable weekend.

Tuesday, February 6, 2018

Welcome to my blog.

Whether this is your first time visiting my blog, or you have followed me closely over the years, wondering if I had slipped off the face of this earth; welcome to my blog! So, what did happen to Elaine Benton? Where have I been all this time, and “what’s the story?”, I hear you ask. It isn’t a pleasant tale, and I was hesitant to tell it at first, but as it now has a happy ending and may give others hope, I felt compelled to share with you my experiences and knowledge gained along the way.

As we all know, each Parkinson’s patient is different – there are no two cases alike. However, sharing information with one another is vital, and it is for this reason, I decided to blog again. This may take a while, as my typing is now extremely slow. I’m known for my straight talk and I never sugar coat what I have to impart. So, grab a cup of coffee, make yourself comfortable and I shall endeavour to bring you up to speed.


When I first started blogging, I found there was so much to learn, I was not short of content and had much to say. In the early stages of Parkinson’s, it was easy to see the funny side of things, and although I always wrote about relevant topics, some of which were quite serious, there was always an undertone of my sarcastic dark British humour.

The last year has been a rough journey and there were times that i didn't think I'd make it, but I'm one tough cookie and I'm still here. Friends came to stay and we had the most wonderful time, but there's always that point at which guests have to leave,and I hate saying goodbye, so instead I say see you soon.

Friday, March 18, 2016

Last Post

As Parkinson's disease progresses, my body feels tired, but I'm grateful to have clarity of mind. I have dedicated the last five years to blogging, writing endless articles, and expending great efforts with the sole purpose of helping create greater awareness and connect with others in similar situations. I never dreamt that my blog would be followed in over 70 countries around the world. However, after much thought, I have come to the decision to bring my tireless campaigning to an end for I feel that the time is right for me to prioritize how I use my energy.

Don't think for one moment I'm giving up or giving in, but hope you understand that I want to spend more quality time with my family and friends. With my “on” episodes being so erratic, I wish to spend more time in the warmth of their loving embrace when I can enjoy them. My typing has become extremely slow and it is difficult to do what I once did and so the need to conserve my energies to spend time with family and friends, enjoy being in the garden, and going on short outings has become my first priority. Being realistic, the sands of time continue to flow through the glass and no amount of wishing can magically make the grains slow down or stop.

It is therefore with a heavy heart, that today’s entry in this blog will be my last. Over the past few years I have taken you with on my journey, sharing with you along the way useful information, my thoughts and emotions, which hopefully have given you food for thought.

I would like to thank all who have been following me, for you have given me in return support and encouragement to carry on writing. I wish you the very best, success in all your endeavours, but most of all, good health.

This site will remain on-line should anyone wish to read back through the archive, or purchase any of my books.

I wish you good health and for now bid you a fond farewell.

Friday, March 4, 2016

Gaucher International Family

The world is becoming a small place, thanks to modern technology, and in particular the internet. The isolation felt by patients and their families living with rare disease, will hopefully become a thing of the past. I wrote a short series of poems about growing up with Gaucher disease, entitled “Let’s Shoot The Breeze AboutGaucher Disease” – corny title, I know, but it’s had the desired effect. Although possibly too small a collection of poems to legitimately call a book, I never the less had it uploaded on Amazon for I had other intentions in mind. I did not expect any sales, but rather had the idea, if anyone was searching to connect with another Gaucher patient, a quick search on Amazon would reveal my little book and provide a way of getting in touch.


Imagine my delight when a fellow Gaucher patient got in touch, all because of my little book. Thrilled that my idea had worked - don’t you love it when a plan comes together?!!! A young lady who has her own website called “Gaucher Stories” contacted me. The site is a platform, almost like a meeting place bringing the international Gaucher family together where one can share stories and experiences. Living with a rare disease such as Gaucher, being in contact with others who have similar stories to tell is of tremendous value and support.

Friday, February 26, 2016

Rare Disease Day 2016


“Rare Disease Day” was conceived nine years ago and is marked on the last day of February every year by the international rare disease community. This year, being a leap year, 29th February is a day when we hope to raise awareness and bring to the forefront many rare diseases, that due to their very nature and small numbers of patients, are not often heard of.

The blue denim genes ribbon was cleverly conceived and adopted last year, to represent rare diseases.

A picture is worth a thousand words, so they say, especially in today’s high tech world, no one has the time or patience to read, and attention spans are short. This is where cartoons can effectively get a message across, imparting information, expressing opinions and making a statement. It was with this in mind that a friend, who has been a Cartoonist for over forty years, kindly offered to donate a cartoon especially for Rare Disease Day. I would like to thank my friend, Yaakov Kirschen for his donation, courtesy: “The Dry Bones Academy” which can be re-posted and used by anyone to promote Rare Disease Day.

If you would like to read my article about Rare Disease Day, please take a look at The Huffington Post.


   

Friday, February 19, 2016

A trip to the ER

I was recently hospitalised – a familiar occurrence in this household. I’m sure you would agree, that hospital pyjamas are not exactly renowned for their sense of high fashion or style, not to mention their “one size fits all” policy! I think it’s fair to say that patients come in all shapes and sizes. Arriving in the ward, a nurse brought me pyjamas, telling me they only had three sizes; large, large, or Extra Large! It sounded like the beginning of a Monty Python sketch and I tried to hide my smile. I settled on large, but I need not have worried, for the size was immaterial when I found only three of the metal poppers actually worked. The broken ones remained merely as decoration, unfastened leaving the front of these pyjamas revealingly open. A younger woman might have carried off this racy look, but I’m 52 and look a little worse for wear, so I seriously doubt this was a good look for me. The hour was late, after having spent a considerable time in the ER and I was exhausted from all the evening’s excitement, and just wanted to go to sleep.

Once settled in the ward, the doctor on call that night, paid me a visit. She wanted to hear first-hand exactly why I had been brought in, and so I explained (what felt like the hundredth time that night) the worrying symptoms that had begun a few hours ago. The doctor asked me “Apart from these symptoms, do you have any preceding health issues?” I smiled, thinking to myself, here we go again – I hope you’re ready for this! I launched into my story of being born with Gaucher disease, a rare genetic disorder and at the age of 44 being diagnosed with Young Onset Parkinson’s disease. The doctor had a hard time keeping up with me as she wrote quickly in her notes. Finishing my late night performance, I wearily leaned back on the pillow. The doctor with pen poised then asked “Do you have any other health issues?” I couldn’t refrain from laughing at this question, and never short of a retort, said “I think that’s quite enough, don’t you?” Seeing the humour, the doctor nodded and readily agreed that I had more than enough!

Friday, February 12, 2016

System Shutting Down

Having difficulty in typing, family and friends have been helping me out. So it may not be my fingers on the keys now days, but these are still my thoughts, my words and my personal experience that I’m sharing with you. If the reality of what I’m living with is too hard for you to digest, I don’t blame you for not reading on. Why am I writing in such a brutally honest manner? It certainly isn’t to upset or frighten any fellow sufferer. My hope is to reach the powers that be, those in R&D or running clinical trials, scientists, doctors and medical students. I want there to be a greater understanding of what it really means to suffer with Parkinson’s disease.

As if living with Gaucher and Parkinson’s disease isn’t enough excitement for this household, throw into the mix a slipped disk and you may have a recipe for disaster. A golden rule regarding a slipped disk, is bed-rest. A slipped disk usually entails not being able to stand, walk or even sit, the only remaining option is lying down in bed. After a lot of painful slow squirming, finding a position that is relatively pain free, with pillows strategically positioned, anyone in their right mind would be extremely reluctant to move. However having Parkinson’s, remaining still in bed proves to be a tall order.

So here lies the problem; Gaucher disease, making joints and bones painful, a slipped disk that requires bed-rest and little or no movement, and lastly but by no means least, Parkinson’s, with a myriad of symptoms that exacerbate and delay the recovery of a slipped disk. To allow my back to heal, lying in bed several days, being immobile is like giving Parkinson’s the green light to go ahead, which is all it needs to drag anyone it can, down a slippery path at an alarming speed.

The human body is like a finely tuned machine and nothing short of miraculous in design, so long as one remains healthy. Unfortunately, when serious health issues arise, the delicate balance is upset, which can begin a chain reaction of sorts, sending everything out of whack.This is where the human spirit, strength of character, determination or sheer stubbornness, whatever you may wish to call it, is put to the test, for I believe this is what keeps me from giving up and shutting down.

Some years ago, my voice was recorded with the purpose of being used for a mannequin attached to an ultrasound simulator teaching aid. I had to read several prepared sentences, one of which seems highly inappropriate regarding my situation today. So should you ever be in a medical training facility and hear a woman’s voice with a strong British accent coming out of an ultrasound simulator saying: “system shutting down”, yes, that’ll be me!