Resourcefulness

Resourcefulness is one thing that you really need when living with DMD, whether it's personally in terms of overcoming a disease barrier or ideas your parents or caregivers come up with, it is a vital thing!

My mother for instance came up with an idea to lift my standing frame (with me in it) using the ceiling hoist after the people who used to lift it were told not too. My mother thought about the problem and had a brainwave. (Although I wouldn't recommend this now but we were desperate all those years ago).

In my book I mention a few times about my dads resourcefulness, he made me a table, customized my headrest and one time fashioned a tray to hold my legs which were encased in plaster, it's first use was a bit hairy but it worled!

Extract
They were in heavy plaster which meant I needed support for them in my wheelchair. My father being an engineer fashioned a wooden tray that went under my seat and stuck out a few feet. My legs rested nicely on top of it.

The wooden tray couldn’t be secured so whenever my father braked it slid forward and my legs would hurt... I’m sure I nearly fell out of my chair a few times, but luckily my mother kept hold of the tray. It was a journey that usually took forty minutes; it felt more like four hundred! Finally we got home and I was so relieved to see my house, to see my sisters and to see my dog.

If I ever need anything built my father’s always there to make something, he fashioned my head rest, made me a drink holder and even replaced my table top to name but a few.


If you would like to read more on the resourcefulness that my family and I have displayed please visit 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.