From one moment to the next....

It's a strange thing being an adult with DMD, one moment I could be moments away from passing out then the next moment I'm reasonably fine laughing and chatting away. It shows how we all live on a knife edge, one moment away from death. We truly are living in a temporary state.

One particular day, I was having my tracheotomy tube changed when suddenly there was a problem and the change was aborted mid way through. The next hour was fraught as we rush to intensive care to have the tube properly fixed in! Everything was ok but it really was a cliffhanger that could have easily gone wrong. This is not something most people deal with on a daily basis.

Extract; ...Quickly and without a great deal of fuss he [the intensive care doctor] inserted a fresh plastic mini tracheotomy [tube] into the hole halfway up my throat. Finally and with a huge amount of relief my mother suctioned away the excess and potentially dangerous secretions rattling in my windpipe. The white mucus would literally ‘shoot’ up the suction tubing with a gurgling sound that only signalled to me pure relief. Moments later with a clear chest I was laughing and joking with my parents....

Read through things that most people (without DMD) would never even think about in my book DMD LIFE ART & ME and buy here; http://duchennemen.net16.net/buymybook.html

Challenge your mind.


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.