Uncharted territory...

After my stressful year in 2001, I had this new fangled mini tracheotomy in my throat and a chest that didn't feel as if it belonged to me.

I had great difficulties deciding when I needed suctioning and when to stop doing it. Sometimes a mere cough might lead to an eruption of mucus or it might be just a cough. Or when in the process of suctioning it's hard to know when to stop, there's no green light in my lungs to stay stop, so it involves intuition and a bit of guessing.

Extract;
...We were fine with the clean procedure of suctioning but crucially I was struggling to know when to halt the process. Every time I thought my chest was clear of fluid and told my mother to remove the catheter, ... but two or three minutes later I could hear and feel secretions again. This meant I had to redo suction much to my mothers’ annoyance. After many stressful days I was finally learning my body’s telltale signs and signals, when I said my chest was clear eight times out of ten it was....

Find out how I coped with further challenges in my book DMD Life art and me here;http://duchennemen.net16.net/buymybook.html



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.