Downs and Ups

Available in EBOOK and PAPERBACK versions

Yesterday I had a visit from a physiotherapist. It was the first time I saw one in about 11 or 12 years. That is the state of Duchenne care in Wales.  Anyway the physio began to look at my hands, and it wasn't good news. You see my hands have taken the shape of fists after many years of games console use between the ages of 17 to 21. After I could no longer play my games console my hands weren't really stretched because I had no physio and I wasn't sure how to tackle them. They continued to get worse and now the physiotherapist says they are too far gone to help.

Extract;
....It’s impossible to straighten my fingers, trying to do so will cause me a lot of pain and could break a bone....

It was not all bad news because my feet were doing very well. I had surgery  when I was nine years old, to loosen [by cutting] my hip flexors, hamstrings and ankle tendons. This combined with the use of splints for a good many years has ensured that my feet are comfortable whilst I sit in my wheelchair. So it was a day of downs and ups! On a positive note I can still use my mouse even though my hands are mangled! Read about my positivity through disasters in my book DMD LIFE ART & ME!

EBOOK available here; https://www.smashwords.com/books/view/69702

Available on Amazon USA here; http://www.amazon.com/DMD-Life-Art-Ian-Griffiths/dp/1907652337/ref=sr_1_1?ie=UTF8&s=books&qid=1288120811&sr=8-1

Available on Amazon UK here; http://www.amazon.co.uk/DMD-LIFE-ART-AND-ME/dp/1907652337/ref=sr_1_1?ie=UTF8&s=books&qid=1288105302&sr=8-1

All links available in my website here; http://duchennemen.net16.net/Buy-my-book-s/


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.

When adaptive technology fails

Available in EBOOK and PAPERBACK versions

Last night my adjustable bed would not work, so I spent the night in the exact same position, thankfully I slept with no problems. Although it is very annoying when you cannot move to get comfortable in bed. It is a good thing that I had a working air mattress or I might have begun to develop a pressure sore! When your adaptive technology works properly, you can be lulled into a false sense of security, thinking you can take on anything. That is the same for every human being but with DMD these things can quickly become life-threatening, especially if you're ventilators stop working etc!

Extract from 2006;
.....My personal problems all seemed to be leveling out around me but as I know only too well life tends to throw a spanner in the works. That spanner in this case was my old grey lift. It had been my loyal servant for a shade over a decade, but time and wear had started to take its toll...

It is all about your attitude in these times that will get you through and in my case a strong a reliance on faith. If you have a positive outlook and hope then you can overcome quite a lot. Hopefully you can see within my book how that positivity comes through especially when times get tough.

Find out more in my book DMD LIFE ART & ME!

EBOOK available here; https://www.smashwords.com/books/view/69702

Available on Amazon USA here; http://www.amazon.com/DMD-Life-Art-Ian-Griffiths/dp/1907652337/ref=sr_1_1?ie=UTF8&s=books&qid=1288120811&sr=8-1

Available on Amazon UK here; http://www.amazon.co.uk/DMD-LIFE-ART-AND-ME/dp/1907652337/ref=sr_1_1?ie=UTF8&s=books&qid=1288105302&sr=8-1


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.

Distraction to DMD

Available in EBOOK and PAPERBACK versions!

When I was younger and DMD wasn't biting much going on day trips and vacations was a great distraction. We still can see and think and experience transcendental things, just a change of scenery can offer new inspiration.
So numerous were my good memories that to fill my book with them would have taken up to much space! So I summarized.

Extract;
...I liked to go on day trips away from our main holiday destination to visit museums and other interesting sites. I’ve seen an airplane museum, train museum and various
shopping areas. I took my chair (reluctantly) on a canal barge and on a boat cruising up Lake Ambleside in Lancashire. I saw Alum bay on the Isle of Wight, with its beautiful multi-coloured sands...

It's good to experience good things! Read more about my adventures in my book DMD LIFE ART & ME!

Available on Amazon USA here; http://www.amazon.com/DMD-Life-Art-Ian-Griffiths/dp/1907652337/ref=sr_1_1?ie=UTF8&s=books&qid=1288120811&sr=8-1

Available on Amazon UK here; http://www.amazon.co.uk/DMD-LIFE-ART-AND-ME/dp/1907652337/ref=sr_1_1?ie=UTF8&s=books&qid=1288105302&sr=8-1

EBOOK available here; https://www.smashwords.com/books/view/69702

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.