Today I had a photo shoot for a newspaper article that's coming up soon about the way I work and features my books. Ironically it was a beautiful day today with hot sunshine but in the September shade it was really cool. Quite quickly my arms were chilled but it wasn't affecting me too much. However I went back inside my house and had more photos taken by an open door with a cool wind funnelling toward me. Then something changed as suddenly my hands shut down on me. I couldn't move my wheelchair control which has a very sensitive stick anyway so I was trapped being even more restricted than normal. My mum had to push my chair into the usual place I sit. It's very humbling to be so reliant on another person. Eventually I warmed up and can access the outside world via this computer. Hopefully the photos will be well worth it! Doing anything with Duchenne's requires hard work and sacrifice but most of all sheer positivity.
Extract
.... I feel the cold very badly these days, I suspect the reason behind this is the fact I can’t move anymore (I’m often found swathed in fleece covers and wraps; our heating is on throughout the year too!)...
Find out how I deal with the cold in more depth 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.
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