Sometimes quick, sometimes gradually

The muscle deterioration in DMD can oftentimes be slow but sometimes it's amazingly quick. Although I absolutely despised stretches (on my legs), they really are necessary to keep discomfort and pain at bay in the younger years.

During my vacation of a lifetime over in Florida, I did not do any of my stretches and consequently paid the price later on when I returned home. You really get to see how quickly DMD can deteriorate when you don't do what you need to do. Many people in the know will tell you that you should never stop stretches as a treat.

I noticed that only after two weeks it was excruciating to go in my standing frame.
Extract;
...The pain was immense after the holiday because we didn’t really do my stretches often enough (it was a vacation after all). It was absolute torture standing again in my ‘clickers’. My knees were burning; it felt like my ankles were braking. I would plead with my mother to get out of the frame but I had no choice as it was part of my physio regime...

Well I really wish I took the advice that is being given now! However currently (age 27), I don't have physio any more, partly because it would hurt and partly because I have no physiotherapist. Post 18 care leaves much to be desired in Wales!

Don't forget my free e-book offer!!!!! For one month only until the 26th of May my e-book version of DMD LIFE ART & ME is free, you can get your FREE version here; https://www.smashwords.com/books/view/69702

If you still prefer the look and feel of a real book then please visit here to buy my paperback version; 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.