There have been some fantastic inventions in the world of Duchenne that have prolonged life by many years and offered many improvements to the quality of life. Ventilators have really come along from the days of the iron lung. The choices are amazing now. Non invasive ventilators using discreet nasal masks that use the natural way of breathing instead of tracheotomy tubes (although they help quite a few) have been very important in lengthening life. Something that isn't medical but has made my life easier has been voice recognition software. I wrote my new book using that. There are so many more inventions out there, the options are endless!
Extract;
...I came across an even better art program. It ... featured a very strange drawing of a hand with many fingers on the box. It was most definitely eye catching and I
became even more excited......
An art program available on the computer was so very liberating and definitely a great invention for me! You can read about the great inventions in my life 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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