As you may or may not know my hoists are condemned and I'm waiting for replacements. Sadly this means no bathing which isn't great! Today I had to wash my hair. It was a complex operation of covering my chair with a towel and getting a water basin and sloshing water over my head. The water goes everywhere and thankfully missed all important electrical equipment. Still not a fun experience though.
Extract ...as I know only too well life tends to throw a spanner in the works...
While doing this I invented in my mind a hair washing gadget but I think they exist already! That's looking on the bright side. Read more about other hair raising experiences in my book DMD LIFE ART & ME!
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-books/
EBOOK available here; https://www.smashwords.com/books/view/69702
My new Ebook Poetic Diversions available to buy here; https://www.smashwords.com/books/view/206857
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.
No comments:
Post a Comment