Writing woes...

In secondary (high) school about 14 years ago (that long!) I needed help to write. In the first and second years I could write pretty well on my own and keep up but quickly I just couldn't write what was needed.

Thankfully this was exactly why I needed a one to one aide, she took over writing and would also write as I dictated during exams. The only downside was doing my exams in a small cupboard type room!

Nowadays there's far more in the way of technology, like dictation software and on screen keyboards etc. So there are more options. Now children and adults with DMD (with a few exceptions) can easily interact with the world. The internet may have a bad name in some circles but it has opened up communications to so many disabilities not just DMD.

Extract;
...Increasingly Mrs Watkins had to write for me as a scribe. I would dictate my answers and she’d write things down word for word. Any long words I would have to spell out as it was my work. If I made any errors they would be mine....

Read more on communication in my book DMD Life art & me, and buy a real life 'textbook' here; http://duchennemen.net16.net/buymybook.html

I really appreciate all your purchases, thank you!


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.