Sleeping presents many problems, with comfort and pain locked in a balancing act. A must have if possible is an adjustable bed. This helps me control my position to avoid the back pain I often get. Another reason why I need an adjustable bed is to help me breathe by keeping my chest secretions in the right place.
Extract;
...I’m always concerned the mucus will come back while I sleep on my ventilator so I try to keep my bed as upright as possible to avoid this...
The position I end up in isn't great for sleeping. It's just another part of the Duchenne's balancing act.
Read more about the often hidden struggles I've been through and all the positive solutions my family and I have found. Keep positive!
Available as a PAPERBACK 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
Get you very reasonably priced EBOOK here; https://www.smashwords.com/books/view/69702
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.
