The occasional pain of DMD...

Generally for those with DMD pain can be a real set back. Not all get into pain, but I know a few people including myself who suffer moderate to severe pain. Twice last night in fact my back was in agony, a sharp nerve pain burning white hot. It's almost tear inducing as I wait for my air bed to inflate on its regular cycle and then the pain disappeared. I tried a strong painkiller but I hated the permanent head fog it left me in all day, so I go elsewhere with pain relief using faith and sometimes lesser medication. Mostly there's a certain level of discomfort in the background but I have gotten used it. The first memories of pain I have revolve around stretches that are needed earlier on to help us stay on our feet or stay flexible;

Extract; ... Often the doctor’s and physiotherapists would stretch my legs, feet and arms. I can only ever remember the pain, it would make me cry out and hot tears would run down my
cheeks. I understood that I needed to endure this because my legs were very weak, but I still hated it .... My legs were really tight and sensitive to pressure so my mother was told to stretch me everyday. I had to endure this pain everyday, some days I would just get so fed up and angry of Duchenne’s that I would argue and bargain just not to do them.....


Find out how I coped with pain and many more challenges in my book DMD Life art & me, and buy here;http://duchennemen.net16.net/buymybook.html


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.