My terrible year was behind me in 2002 but I had a lot to get used too. I had this strange mini tracheotomy and a ventilator to use. The ventilator was pretty easy to get to grips with but the tracheotomy was a whole different ball game. Not that the hole caused me problems, it was finding out whether I needed to clear my chest or not.
Extract;
...Every time I thought my chest was clear of fluid and told my mother to remove the catheter, “Right, I’m done Mam” I would say but two or three minutes later I could hear and feel secretions again. This meant I had to redo suction...
Eventually I got it more or less under control and really felt better but it was certainly a trial getting it right.
Read how I adjusted to all the new things in my life in my book DMD LIFE ART & ME!
Please visit here to buy my paperback version; http://duchennemen.net16.net/Buy-my-book-s/
Only 10 days left!!!!!
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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