Out of control

 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

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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

Balancing the risks

FANTASTIC FREE EBOOK offer still on!!!! 11 days to go!!!!

By my third visit to ICU in 2001 I was thoroughly fed up of the seemingly endless procession of hospital visits I endured. I was offered the solution of a permanent mini tracheotomy which I accepted after some thought. I was concerned by the risks of further infection but the build up of secretions in my chest was a bigger problem. On balance it was the best option to take at the time.

Extract;
..However he thought the benefits of clearing my airways certainly outweighed the risks posed by infection as long as we used the correct clean procedure..

It turned out really well for me! I've been to the hospital a lot less and it certainly gave me my life back. Before, the risk of a return trip to ICU weighed very heavily over my head. I'm very grateful to still be here!

Read through my tough year and look at the way everything turned out in my book DMD LIFE ART & ME!

Please visit here to buy my paperback version; http://duchennemen.net16.net/Buy-my-book-s/

Don't forget my FREE e-book offer!!!!! For one month only until the 26th of May my e-book version of DMD LIFE ART & ME is FREE, you can get your FREE version here; https://www.smashwords.com/books/view/69702

Only 11 days left!!!!!

DMD helped raise me above the clouds

It's not all pain, surgeries, aches and difficulties having DMD. It has led to amazing things, I've visited a former prime minister, seen an MEP at school, been on a fantastic vacation to America amongst many other things.

One such occasion was when I was offered a ride in a helicopter, I only had this opportunity because I had DMD. So you can see Duchenne has its benefits, although it can never really make up for it but you do get wonderful memories!

Extract;
...Suddenly the engine powered up with a thunderous roar and the rotors started
whooshing by very swiftly, turning into that familiar black blur. We quickly took off, climbing higher and higher; rising above thin clouds. All the people disappeared into distant dark specks. The helicopter tilted forward and we were off, about to explore the world around us...

Explore more of my wonderous memories in my book DMD LIFE ART & ME, buy the ebook and paperback versions 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.