Mechanical moving...

A downside to a disease someone is born with, is one thing every mother dreads; a child growing out of things! Instead of growing out of shoes and uniforms, we grow out of wheelchairs and adaptive technology as well as those things. I would get so fed up of trying to get comfortable in a new chair then having to get another one within a year or two. As a child watching my body change I just didn't want anything else to change. In the end I would change but only when I could see I needed it. Now while this current wheelchair lasts I'll keep using it hopefully!

extract;
...I soon got comfortable in this new chair but I was so fed up with the constant equipment entering my life all the time. Just when I had gotten used to a piece of equipment I was measured up for a new item. There’s no choice with DMD you either
had to change or be in pain from an undersized piece of equipment...

Read more about this and find more gems in my book DMD Life art & me; 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.