The worst time for a power cut has to be 4 AM. I had my mask on and everything going black with no air on is certainly worrying. Eventually I had my mask removed and power was restored quickly phew! If the power goes off everything alarms, my air mattress, my special telephone and my ventilator all whine away. Once power returned everything went quiet but there was one alarm still wailing.
Extract;
...Suddenly and unexpectedly I had to breathe for my self, quickly my heart started thumping [thankfully] the Nippy wailed out its alarm and I was quickly
reunited with the cool pressurized air that I was .... accustomed too....
Back to this mysterious wailing! We couldn't figure it out, convinced it was the bed we tried all we could to stop it. Eventually we tried switching off my ventilator, and blissful silence, you see we thought it was already off! That was really funny even at 4:30AM!
These alarms aren't mentioned in the DMD handbook if such a thing existed but you can read about those often unmentioned challenges 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-book-s/
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.
No comments:
Post a Comment