It is very easy to lose control of your wheelchair when you can barely move. I have an extremely sensitive wheelchair controller, which can be a blessing or a danger. It is a blessing because I can easily drive my wheelchair (when my hands are being cooperative) around my house or while I am outside. This afternoon it was quite positively a danger! Accidentally we tried to move my wheelchair controller away from my hand but we had not turned off the wheelchair. So my wheelchair went completely out of control and I careened into the radiator, thankfully no one was hurt but it did shake me up a bit. It is at times like that when you feel very helpless! We with Duchenne's have a very tenuous grasp on control. Only one thing being slightly out and we lose control. It makes you thankful for the little things in life.
Extract
....Duchenne Muscular Dystrophy is a rare (approx. 1 in 3500 births in the UK) severe terminal muscle wasting genetic disease that gradually kills all the body’s muscle cells. Firstly it attacks the skeletal muscles, especially the legs, hips, arms and spine....
Find out 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
My new Ebook Poetic Diversions available to buy here; https://www.smashwords.com/books/view/206857
All links available in my website here; http://duchennemen.net16.net/Buy-my-books/
My art can be viewed here; www.artwanted.com/thebigG2005
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
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
My new Ebook Poetic Diversions available to buy here; https://www.smashwords.com/books/view/206857
All links available in my website here; http://duchennemen.net16.net/Buy-my-books/
My art can be viewed here; www.artwanted.com/thebigG2005
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
I have had these exact same experiences Ian! Especially when my hands get cold, I can barely move my hands to drive my chair, which further reduces my already limited independence. I have had a few scary moments too, I have asked people to tilt my chair forward which you do by pushing my joystick forward. But sometimes we havent noticed my control was still in "drive" mode, and instead of my chair tilting it has flown forward into the wall or a table, which when you arent expecting it gives you a real brown-trouser moment!
ReplyDeleteWhat sort of controller do you have Ian? Im actually waiting on a new controller, it will be a tiny joystick which will be mounted onto my tray, I think its official name is simply the "Mini Joystick".
Hi Robert :),
DeleteGetting cold sure is an enemy to us with DMD. I was literally to cold to move back in September. I've gone into tables and doors and all sorts when out of control, so scary it gets the adrenaline going!! I have a mini joystick like you describe but I'm finding that difficult to use now, I have an idea to use laser proximity switches that only by waving a finger minutely it would activate it, although I want to use my tongue to do that lol.
Take care mate,
Ian