This morning whilst in bed on my ventilator sleeping peacefully the power went off. I find myself locked in behind a facemask heating up with the breaths I have to take myself. I contort my face to make a gap to let some cool ambient air in. My ventilator is screaming out an alarm powered by a tiny battery, my electric bed went off and my air mattress is wailing it's alarm. Quickly the problem was found and power was restored! I resume my assisted breathing a little weary of sleeping.
I have some backup batteries, a battery powered ventilator, a battery powered suction machine, a battery operated hoist and most importantly faith. It is vital to have some backup plans for this eventuality!
Extract;
...for the dependant people like me we need our wheelchairs and ventilators charged and reliable power for suction machines, hoists, beds, mattresses and food blenders....
Read more about those things you'd never think were Duchenne's related in my book DMD LIFE ART & ME!
Get you very reasonably priced EBOOK here; https://www.smashwords.com/books/view/69702
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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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