Car cramming...

My last vacations back in 2000 and 2001 were getting really difficult. The places we went didn't have beds that were great so we took mine. Thankfully having a van helped accommodate this, we also took my mobile (moveable) hoist and luggage and me and my parents. To say it was tight was an understatement! Six hours in that position was a little uncomfortable but we got there.

Vacations never felt like a rest because I took DMD with me, and using less comfortable devices and strange surroundings just made things a little harder. It was more work for my parents. We made the best of it though and had happy memories but we've never been on vacation since. I know there are more accessible places to go but I find home more comfortable for now.


Extract;
....Our luggage would fit in the extensive boot area and my dismantled mobile hoist ready for transport would be resting on my rear wheels. If we had a smaller vehicle holidaying would have been very difficult if not impossible. I would stay in this position for around six hours while my father swiftly drove us....

Read about my vacations and see the good times in my book DMD, Life ary me; 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.