When the things I need to help me live a basic comfortable life work then everything is going great and I feel I can do most anything. Things like a working blender so that I can eat, my lift, my adjustable bed, my wheelchair and a few other things. A couple of days ago my lift decided to break down and that left me stranded in my room until hopefully tomorrow. This has made me think about the dependence an adult with DMD has upon these basic elements.
Extract;
...It’s easy for them to pitch a tent and live up a tree getting closer to nature, but for the dependent people like me we need our wheelchairs and ventilators charged and reliable power for suction machines, hoists, beds, mattresses and food blenders. The drastic changes proposed by environmentalists and governments never factor in these problems. They just talk about ‘keeping the lights on’ but for me and others in similar situations it is a question of life or death....
When one of these elements fails, it can have a huge impact upon my life. It just goes to show that there are more important things than just the Internet or Facebook. A close-knit family really does help during these times of temporary emergency and the help of a few kind individuals. There is always hope!
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
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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