Things I notice

When I wake up I have no idea what the time is. I've tried electronic clocks but they break often and annoy with their bright lights so they went out lol. I have analogue clocks on my wall but my shortsightedness prevents me from seeing them properly. If conditions are right (if enough light flows in, if I squint and lay in the right place) I can just about make them out. This has led to some funny things happening! Often I call my mother with my environmental control at just the wrong time, the poor thing has missed many cups of tea, been on the phone, been using the facilities or collecting the shopping. My unusual "alarm clock" called my bladder woke me up this morning about an hour earlier than normal so I was very confused to see the time!

It's often the tiny things that you wouldn't necessarily think even relate to DMD that can be vital or very helpful to your life. Again the textbooks are very sparse on this kind of thing. Someone should write a better one ;)

Well you could read DMD LIFE ART & ME to find out more, while not a fully definitive textbook it certainly puts some flesh upon those bones!


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/

My art can be viewed here; www.artwanted.com/thebigG2005


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