Easy to do? Not quite....

Everyday tasks that seem ridiculously easy to everyone can be impossible for those with DMD. Take for instance sleeping, before I can think of sleep I need my mom to hoist me into bed then clip me into a full face mask and hook me up to my ventilator. Just jumping in bed isn't an option.

Another area is feeding, picking up a knife and fork is something I haven't done in ages! It's a major thing to lose that one particular independence, many don't deal with it well as it generally occurs in the teenage years. I dealt with it quite easily for some reason, although there were sad moments thrown in.

Extract;
....again my mother would have to feed me.
I had no problem accepting this part of my life; I knew I couldn’t feed myself so it was either that or go hungry.

To read more about the little independence losses I went through and see how I coped then buy my book 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.