During a life with DMD you may (not always) encounter surgery. It may be hip, knee or ankle releasing, spinal surgery, feeding tube installation, tracheotomy installation or even bowel surgery. I know I've had 3 procedures tried, only 2 successful, that being a mini tracheotomy and hip, knee and ankle (H/K/A) surgery.
The H/K/A surgery left me in plaster six weeks, it was an absolute age for a nine year old! Plaster is really awkward when you have trouble moving anyway and you need resourcefulness to find a way to accommodate it. My dad made a tray for my legs to be supported on and figured out a way to operate my lift so my feet fit in.
Once the plaster was off I was very happy, I smile now looking back as my father decided to poke my ankle after it was released, it felt like jelly!
Extract;...It wasn’t long until my plaster was removed. I was feeling very tender as my father pressed his finger against my ankle, but at least my legs were much
straighter now. I then needed intensive physio for a few more weeks...
Read about my other operations and I know many can relate to them in my book DMD LIFE ART & ME; buy my 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.
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