Last night I was in bed thinking about eating. That can be a frustrating experience indeed! I was thinking about eating a lovely juicy red apple and imagining what it tasted like! Then I realised I just simply could not eat that. I have my work cut out coping with this but faith most certainly get's me through.
Extract;
...I was discussing with a nurse about my eating difficulties and they suggested that I try the puree menu the hospital had.....
Like it says above I am fortunate enough to eat pureéd food which means that I can experience the tastes of at least a few things. I know people with Duchenne's who are totally tube fed and I can only imagine how they feel.
It is not all doom and gloom though as I also know a lot of people with Duchenne's who can still eat the conventional way! It just goes to show that they are no guarantees even in DMD. So it is definitely worth staying positive as there is always someone worse off than you.
Please visit here to buy my paperback version; http://duchennemen.net16.net/Buy-my-book-s/
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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.
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