Yesterday I had a visit from a physiotherapist. It was the first time I saw one in about 11 or 12 years. That is the state of Duchenne care in Wales. Anyway the physio began to look at my hands, and it wasn't good news. You see my hands have taken the shape of fists after many years of games console use between the ages of 17 to 21. After I could no longer play my games console my hands weren't really stretched because I had no physio and I wasn't sure how to tackle them. They continued to get worse and now the physiotherapist says they are too far gone to help.
Extract;
....It’s impossible to straighten my fingers, trying to do so will cause me a lot of pain and could break a bone....
It was not all bad news because my feet were doing very well. I had surgery when I was nine years old, to loosen [by cutting] my hip flexors, hamstrings and ankle tendons. This combined with the use of splints for a good many years has ensured that my feet are comfortable whilst I sit in my wheelchair. So it was a day of downs and ups! On a positive note I can still use my mouse even though my hands are mangled! Read about my positivity through disasters 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
All links available in my website here; http://duchennemen.net16.net/Buy-my-book-s/
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.
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