Things you miss

There are certain things you can miss with DMD that you would not necessarily expect. I expected walking, breathing and possible heart difficulties but I didn't expect to miss out on playing games with my niece or nephew. It's difficult watching them when I want to help my mom out by occupying their minds. I'd love to draw and help my niece colour in or help my nephew play with his cars. It's also difficult when I'd like to hug them but all I can do is talk which is fortunately really enjoyable. This isn't some pity party because I'm so blessed to have a wonderful family who help me so much. The only way I can cope is with two things hope and positivity. It's not easy but it is worth it because there'll always be things you can do!

Extract
 ... I hope I continue seeing [my niece and nephew] growing up just to see their smiles and carefree joy...


Read more about my family life 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

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.