A little bit of Good care goes a long way!

In my life I have had some shocking levels of care but there has been some shining examples of awesome care and thoughtfulness dotted throughout. Bad care can often humiliate and make life harder than it already is. That goes for anyone but it's ten times harder for someone with DMD. Good care fills you with confidence and reassurance and it improves your life. One good occasion happened to me in primary school;

Extract;
...I was getting noticeably slower and weaker in school; the headmaster was quite
helpful and got the LEA (Local Educational Authority) to install ramps and an improved toilet area for when I would need a wheelchair....

This helpful improvement meant I could stay in school until comprehensive school and it led to a unit being added to help autistic children too. So one improvement meant other children could learn and potentially change their lives.
Find more examples of great care interspersed through my life in my book DMD Life art & me and buy here; http://duchennemen.net16.net/buymybook.html and here or 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.