When muscles start to fade...

Depending on the country and level of DMD provision those with the condition might visit a muscle clinic some time within their lives. In my case I only visited one between the ages of 2 to 10, it was a confusing place, with adults talking about me and seemingly planning out my life. I just wanted to play and go home as soon as I could. They generally monitored my breathing and checked how well I could move. If you (someone affected by DMD) can get this service it's well worth it, as monitoring is vital in preventing emergency admissions. Sadly because the monitoring in general stopped for me I indeed ended up needing an emergency admission fighting for my life in intensive care. So I know how vital this is.

Extract;
...Every six months I was going to the muscle clinic to get progress updates, they would check how far I could walk before getting tired. My lung
capacity was checked with a peak flow meter, you basically blow into a device that has an arrow moved by the air you expel...

Find out more about my life experiences with medical care and with other forms of care in my book DMD Life art & me and buy here; http://duchennemen.net16.net/buymybook.html and here and here!



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.