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, February 23, 2018

Angels Who Make House Calls

I was not living but surviving from one moment to the next. There is only so much that the human body can endure, and I felt I was fast reaching a point where I could take no more. The Social Worker assigned to me by our Health Fund was visibly shocked at my deterioration, and so it was in my darkest hour, she sent angels to ease my pain. Don’t worry, I wasn’t hallucinating and most certainly haven’t lost my marbles! These angels were mere mortals of course, just like you and me and bore no celestial wings. They did however offer a heaven-sent service for patients in special circumstances, chronically ill people who are better treated at home rather than being hospitalised or sent to a hospice.

I will never forget the Social Worker who contacted our family doctor recommending I receive pain relief at home immediately through this organization. Her compassion, understanding and ability to quickly put things into action literally saved me, and within hours a highly experienced professional team, consisting of a doctor, a nurse and their own social worker arrived at our house. With their expertise, they administered to my needs giving me a cocktail of narcotic drugs that after weeks of suffering consistent unbearable pain, I eventually found some relief.

This was one of those moments in life that I’ll always remember. I am so grateful to our Social Worker for thinking of contacting them. So, the pain was now under control, but this was no cure for Parkinson’s and we hadn’t really solved anything. We had simply put a plaster on a gaping wound which bought us time, while the disease continued out of control on its speeding journey.

When pushed to the very limits, the human spirit is stronger and more powerful than we realise. My secret weapon was having something important to look forward to. What could be more special, joyous and life affirming, than a wedding? And so, it was the deep unconditional love of my husband, extraordinary closeness from my best friend and the forthcoming wedding of our darling daughter to a young man we have grown very fond of, that gave me reason to live and put up the fight of my life. 

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.