Chilled out!

I feel the cold terribly even in the summer. Even though summer is a very loose term in Britain! I often say I have no blood in me. With cold hands I can barely move the computer mouse it's as if I'm moving through cold treacle. brrrr!

Even covered in blankets I'm still cold, but once the central heating kicks in I'm moving far more freely. Waiting to get warm is always annoying but you learn patience and tolerance with DMD.

Extract;
... I feel the cold terribly when sat outside [or inside lately] (I’m sure I don’t have any blood!) so I try to get my whole body covered. All you can see is my head floating above my black blankets.....

Read more of these patience building exercises in my book DMD LIFE ART & ME; buy my ebook and paperback version 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.