I have what I call Duchenne's induced paralysis (a term I invented), I can move my hands and legs only a few centimeters but basically nothing else moves although crucially I still have the ability to feel. That can be a blessing and a hardship. One of the hardest things usually happens at 5AM, that being my legs get terribly itchy. I could wake my mother but I desperately don't want to do that because she needs to sleep. All I can do is tough it out waited for the itch to go. It's a small problem in the grand scheme of things but it sure is annoying! The best part about feeling is the control it gives me when painting using my computer mouse. I need very fine motor skills to follow any sketched lines I drew.
Extract...
.... I indeed do still feel although it’s a royal pain when something is aching or needing to be scratched! When I get extreme back ache whilst sitting in my chair, I need to call my mother and she repositions me using my hoist. What takes five seconds for the non disabled, takes me ten minutes of re-jigging!
Read more about Duchenne's induced paralysis in my book DMD LIFE ART & ME!!
EBOOK available here; https://www.smashwords.com/books/view/69702
Available on Amazon USA here; http://www.amazon.com/DMD-Life-Art-Ian-Griffiths/dp/1907652337/ref=sr_1_1?ie=UTF8&s=books&qid=1288120811&sr=8-1
Available on Amazon UK here; http://www.amazon.co.uk/DMD-LIFE-ART-AND-ME/dp/1907652337/ref=sr_1_1?ie=UTF8&s=books&qid=1288105302&sr=8-1
My new Ebook Poetic Diversions available to buy here; https://www.smashwords.com/books/view/206857
All links available in my website here; http://duchennemen.net16.net/Buy-my-books/
Foreword
I’m Ian Griffiths from South Wales. This book is a story of my life so far up to the age of twenty five years. I live with and suffer from the ill effects of DMD which stands for Duchenne Muscular Dystrophy. It is a severe muscle wasting disease and a life limiting terminal illness. It won’t kill you in six months in the traditional sense of ‘terminal’, but it’s far crueller than that, it steals every muscle in your body first and then kills you, anywhere up to the age of thirty. There have been cases of men living past that into their forties and fifties but only with drastic interventions such as ventilators and tracheotomies, more on this can be found by reading on.
I hope to cover a few things in this book, from a history of my childhood years to a more detailed history from sixteen years onwards and finally onto my current problems and triumphs. At times things I write may make you smile or may make you pause and think about the seriousness of life with this devastating disease. I really hope there will be a cure but currently for us supposedly ‘older’ guys with DMD (over twenty one), there seems very little hope. If I don’t see a cure in my lifetime, I hope my campaigning helps in some way bring it about for future generations, so another child won’t have to see their body wither and die before their time.
