Not getting insular

 

When you live and struggle to get everything sorted out with DMD it can consume your entire day and life forcing other things to the side. I've often noticed that our disease is pitted against cancer or other diseases and have been guilty myself of griping against all the money and research lavished on cancer. It's definitely not fair to do this because you risk losing empathy for your fellow man as other diseases really are just as awful and devastating as Duchenne's. There are other things that are also important such as the world news for instance did you know the ring of fire is waking up increasing volcano and earthquake activity and terrible weather is getting more and more common. This may seem inconsequential but if these events happen to a family with a child/adult who has DMD it could be life threatening. If you can prepare for power failures and emergencies that would be a great idea.
I've emphasized those outside areas enough now but there's one area within the life of DMD is important and that is parents getting too focussed on their young child's immediate condition. While I think it's imperative to take things one day at a time it helps to think about accessible housing before wheelchairs enter the picture. Definitely encourage education and think about transition care because after 16 things start to get much harder as proper healthcare in the UK at least can be patchy at best. We never knew anything of transition care when I was a child as I was given a 13 year life expectancy and now I'm 28 this planning definitely might have helped.

Discover what happened when I was given this life expectancy 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