The things we need to remember...

Available in EBOOK and PAPERBACK versions

Last night I meant to charge my wheelchair, but lo and behold I forgot. It'll last to tonight but back in my school days it was a nightmare of slowing to a gradual creep by the days end. Getting a push wasn't out of the question either. If you haven't had the pleasure of pushing a power chair, it is really heavy!

Getting to my age 27/28 and living with DMD I need to remember quite a lot, is my ventilator charged, is my wheelchair charged, do I have enough suction catheters and gloves and many more! Far more important than remembering those tiny minor things.

Extract;
...two ladies came over and saw a wire hanging loose from my battery. She plugged it back in and my power lights flickered back into life. I breathed a huge sigh of relief and thanked the kind lady. I then went on my way slowly avoiding the bumps on the uneven pavement. I got back home a few minutes later saying very little to my mother. The joys of electric wheelchairs!...

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

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.

The DMD balancing act

FREE ebook offer still on!!!!!! 18 days left!!!!!

Last night I had tremendous difficulties trying to move my wheelchair. I have a very light control which is very easy to move but I simply couldn't operate it at all. My arm was tired because I'd been typing with my mouse. Only when my arm was moved could I just barely move and get to bed.

Those moments are very worrying as you feel out of control. Thankfully because I have voice recognition I can do my work on these tired days. Perhaps I should have used it but sometimes quietly typing helps me express myself better. The DMD balancing act goes on!

I remember in school how I used to be able to eat a snack at break time but then it took too long. DMD certainly is relentless

Extract;
...A short recess was always taken at quarter past ten that lasted 15 minutes; I used to eat a small snack that was until it took me longer than a quarter of hour to eat it!...

Read more about the constant DMD balancing act 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 18 days left!!!!!

Looking for school

In the United Kingdom, choosing a secondary or high school is a daunting task. For those with any disease including DMD it can be a nightmare of accessibility, suitability, care needs and the right curriculum.

My primary school was a feeder school to a local secondary. Sadly it all fell through for me as the building wasn't suitable. In their infinite wisdom (tongue firmy in cheek) the primary school made me sit through the introduction process to the secondary school. It consisted of telling us all how fantastic this school was even though I couldn't go! So...

Extract;
...It felt like a cop-out at the time. All of this meant I had to look elsewhere, which was very daunting for me...

I eventually found a secondary school that was suitable but it meant sacrificing my friends. Read through my secondary school selection process and see where I ended up 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

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.