There I was sleeping soundly when all of a sudden my ventilator pipe fell out. That is very worrying as I'm breathing for myself getting hotter and hotter in my face mask. Trying not to panic is the absolute key in that situation. Thankfully a few minutes later mum plugged everything back in and the relief was amazing! You certainly learn many character lessons with DMD, learning patience and self control amongst other things.
Extract;
... the ventilator pipe fell out. Suddenly and unexpectedly I had to breathe for my self, quickly my heart started thumping and I could feel that burning sensation in my lungs again...
The above situation was in hospital back in 2001, so I avoid burning sensations in my lungs now because I'm so much better than then. So it puts that into perspective, for a few minutes I could just about manage :) You've just got to stay positive! Read more in my book DMD LIFE ART & ME!
EBOOK available here; https://www.smashwords.com/books/view/69702
Available on Amazon USA here; http://www.amazon.com/DMD-Life-Art-Ian-Griffiths/dp/1907652337/ref=sr_1_1?ie=UTF8&s=books&qid=1288120811&sr=8-1
Available on Amazon UK here; http://www.amazon.co.uk/DMD-LIFE-ART-AND-ME/dp/1907652337/ref=sr_1_1?ie=UTF8&s=books&qid=1288105302&sr=8-1
All links available in my website here; http://duchennemen.net16.net/Buy-my-books/
My new Ebook Poetic Diversions available to buy here; https://www.smashwords.com/books/view/206857
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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