Regulating heat...

A big problem for me is getting cold, I know many others with DMD have the same problem. Circulation is often affected and because we are sedentary it can often exacerbate the situation. There is an experimental treatment (definitely not a cure) that appears in some cases to improve circulation but for those not using that we need to rely on blankets, heating (radiators etc.) and other heat producing items. It can be a real pain as some can't drive their wheelchairs, hold pens and computer mice or in some cases can even develop sicknesses as it may impact our already weakened immune systems. I need my heating way up high and the rest of my family are boiling while I'm just mildly warm!

Extract;
...I feel the cold very badly these days, I suspect the reason behind this is the fact I can’t move anymore (I’m often found swathed in fleece covers and wraps; our heating is on throughout the year too!)...

Find out more about my exploits with heat regulation all through my life in my book, DMD Life art & me. To buy please visit here; http://duchennemen.net16.net/buymybook.html and USA here and UK 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.