Things DMD can't take...

Even though Duchenne's takes so much away from those who suffer with it, there are things it can't take! Even after being made a full time wheelchair user I still had my curiosity, going up the street to find something very interesting. Enthusiasm it can't quash, loads of those with DMD are go getters, earning, working, writing books and in some cases starting families! You would think being empathic might be difficult but we often care for others and want to see them do well! Imagination is definitely not destroyed by DMD, I have ideas always popping up especially for my art and writing! There's many more I could write about but that's why we smile when we do!

Extract;
..I had to get an electric wheelchair, which was provided by a charity. The one fitted for me was excellent; it even had a bright red comfortable cushion. I didn’t take long to adjust to it. I loved going outside in it, feeling the speed push me over the pavement and up hills. It was only five miles per hour but to me it felt like fifty! I often
drove up the hill outside my house to go and see a large fish pond a neighbour had. The Koi carp would glisten in the glorious sunshine we occasionally had, it was mesmerising for an eight year old...

Read through more happy memories in my autobiography DMD Life art & me and buy here; http://duchennemen.net16.net/buymybook.html and here



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.