Author and blogger battling two chronic diseases while maintaining a positive attitude and sense of humor
Elaine Benton was born in 1963, England. Diagnosed at the age of five with Gaucher disease; a rare chronic inherited disorder caused by a genetic mutation, for which there is no cure. At the age of 44, she was dealt a second blow being diagnosed with Parkinson’s disease. As her life rapidly changed, she began to write poems expressing what so many sufferers were going through but unable to put into words. With the desire to help others in the same situation, a book was born. Feeling she had something unique to offer, she started writing a daily blog http://elainebenton.blogspot.com/ touching on varied topics all relating to living with chronic disease. As an author and international public speaker; her aim is to educate and inform, bringing greater awareness to the general public. Elaine is turning her hardships into something of value and purpose, contributing to society. What started off as a book has spiralled into an entire project as she battles each day with determination, great spirit and humour.
How do you get the general public's attention rousing interest in a rare chronic disease? As a patient advocate and ambassador for Gaucher disease, I have written about every aspect imaginable of living with a rare disease.
I had four older brothers and as the only girl in the family, my mother and I had a close relationship. I left home when I was 21 and not once did my mother voice any concerns or worries, but whole heartedly showed her support, realising it was time for me to find my own way.
If you live with a rare disease like myself, no doubt often out of necessity, you have become your own advocate. I can't recall how many times I've had to explain to medical staff about Gaucher disease, the rare disorder I was born with.
I am always scouring the internet, reading articles and keeping abreast of new developments that may help improve my quality of life, living with Parkinson's. Just like other patients, I have learnt an awful lot in the eight years since diagnosis.
Early diagnosis and treatment can help those living with Gaucher disease lead a better quality of life. Children should not have to endure what I went through as a child. Those memories stay firmly in my mind, and perhaps for good reason, as this gives me incentive to strive for better understanding of Gaucher disease.
Knowing how important physical exercise is to keep Parkinson's at bay, I have taken to swimming on a regular basis, in the hope this will help retain my mobility for as long as possible. The other morning as I entered the Sports Center, I was practically accosted by a woman who appeared out of nowhere.
So onward and upward, I find myself interested in those who run marathons, take part in triathlons, cycle or participate in other sporting events. I cannot participate, so have to be satisfied with being a spectator and writing about those who inspire me!
I grant you that Gaucher disease is more widely known of today than when I was young, but by patient's telling their stories, it brings attention to rare diseases, and gives them an identity creating greater public awareness.
Making a good first impression and leaving your mark is important, but sometimes circumstances dictate an outcome different from what you had hoped for. A particular incident that happened to me a number of years ago comes to mind. I don't think I left the desired impression, but I'll let you be the judge of that...
The body takes a beating from constant symptoms, yet most patients I've come across, gallantly fight Parkinson's in silence each day, so it's no wonder our emotions are also affected. We feel bound by a code of honour to put on a brave face, smile when we can, and continue to sound positive to all those around us as this degenerative disease runs its course.
There are certain wonderful memories that stick firmly in my mind and one particular occasion always makes me smile. Some years ago, my parents-in-law were staying with us during a particularly wet winter.
A few weeks ago, a member of my family was taken into hospital for an operation. Although thankfully not life threatening surgery, I desperately wanted to jump in the car there and then, and drive straight to the hospital. Frustratingly in my physical condition this was unrealistic. I couldn't go anywhere, and a few words of comfort over the phone was all I could offer.
Although I'm highly organised and like being prepared for any eventuality, I must confess of late, living with Gaucher and Parkinson's, not to mention the new four legged addition to our family, it's a job staying on top of things.
Thankfully over the years great progress has been made regarding Gaucher disease, thanks to some very dedicated researchers, doctors and motivated members of the Gaucher community. No parent today has to face the dreadful isolation and hopeless situation my parents found themselves in.
My husband has become highly adept in pushing me in my wheelchair whilst manoeuvring a large case on wheels at the same time - impressively even up and down steep inclines. This requires not only strength but the ability to steer avoiding any oncoming passengers and obstacles.
Having Parkinson's and making a dinner party, requires military style organisation as many things have to be thought of. I try to choose a menu where most of the dishes can be prepared in advance, sticking to simple delicious fail-proof recipes I've made before which require little work and few ingredients.
We have our work cut out for us working together with a professional trainer, and the next few months are not going to be easy, but in the long term we will end up with a well-trained companion/assistance dog who will hopefully enrich our lives, give me better quality of life and help me get through each day.
Who would have thought it possible to turn into a human volcano? I seem to defy the laws of nature; Mount Vesuvius eat your heart out! I have become a human heater, and whilst my poor husband who is nightly tormented by my malfunctioning internal thermostat, he kindly never complains.
My mother was diagnosed with vascular dementia and I was suddenly cast into the role of caregiver. The deterioration was far more advanced than I had first imagined and I witnessed this cruel disease as it left destruction in its wake.
As tough as it is for a patient to receive and come to terms with a new diagnosis, it is equally traumatic on the spouse/partner, who without any prior warning or consultation, is unceremoniously thrown into the role of caregiver. Many pick up this mantle without hesitation, out of loyalty, devotion and love, take on this arduous task.
22/05/2015 00:05 BST
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