Trade Offs

In every life there are trade offs that people have to make whether it's stopping that extra night out  because of money troubles, or whether to do your hair in a certain style with time running out. In a life with DMD there are also trade offs but especially in the older years they can be quite serious.

Personally I often have to make almost daily trade offs especially when my chest is misbehaving. For instance if my chest is really bad then every transfer using a hoist could make me cough so sometimes I must choose whether to use the bathroom or clear my chest. I have to trade off the minimum time I need suctioning but clearing my chest with how desperate I need to use the facilities. Hardly glamorous I know but such is my life. If I get this wrong I could end up chesty in the hoist which I wanted to avoid in the first place or an embarrassing accident could occur. It's depressing when I get chesty near the end of nearly every month awaiting a tracheotomy change. When I hit the hay during these times I dread facing the next day and I'm counting down the days until the tracheotomy tube is changed.

Another literal balancing act is when I'm eating my meals I need my head forward to ease swallowing and if I over compensate my head will fall. If that happens I could potentially spill my drink so I need my mother to push it back up and the whole process continues on. It's very frustrating but I try staying positive to keep my sanity because it's really not worth it when there's plenty of other things needing attention. This life with DMD does give a unique perspective to all affected. My mother has to trade off my care needs with her needs of having a break. Yesterday three of my teeth were extracted and because my aftercare was uncertain she cancelled her night out as they can't administer painkillers. I have amazing parents willing to go the extra mile.

It certainly makes one think.

More can be found out in my book;

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; http://www.redbubble.com/people/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