The importance of the right kit

Available in EBOOK and PAPERBACK versions!

Having the right equipment is absolutely vital for those with DMD. If those with Duchenne's have the wrong wheelchair pain will be a major problem. For the younger ones with DMD writing on a normal table can place a strain on their bodies, so a writing wedge or a specially constructed table is really helpful.

Here's my experience of poor equipment, extract;
...One time I have fallen out of a sling because it was poorly designed, and crumpled up under my body pressure. It flung me to the floor from a few feet in the air; [thankfully] I did no major damage. The whole event shook me up a bit and that sling was quickly thrown out!...

You can see more examples of the right and wrong equipment in my book DMD LIFE ART & ME!

Get you very reasonably priced EBOOK here; https://www.smashwords.com/books/view/69702

Available as a PAPERBACK 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


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.

Equipment takes on a new dimension...

For most of us 'equipment' could mean that new camera you always wanted or a new car to get to work. Equipment takes on a very different meaning for those with DMD. For me it means basic equipment just to function normally. Without hoists, a wheelchair, ventilators, food blenders and a special bed I couldn't even get to my computer. I'm extremely grateful and glad these things have been invented!

Extract;
...I had to have additional equipment added to my house, so I could be transferred from a wheelchair to my bed; also to get on the toilet and in my bathtub. I had two ceiling hoists installed...

It's so vital to have these helpful pieces of equipment to make life that bit easier. Read about all those helpful devices in my book DMD LIFE ART & ME!

You can buy my fantastic EBOOK version here; https://www.smashwords.com/books/view/69702

Available through 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.

The right equipment is vital

Free EBOOK offer still on!!!!! 9 days to go, Final stretch!!!!!!!!!

Right equipment is vital.

In the years following my stay in hospital I had developed a very painful sore area on the bridge of my nose. It was agony putting my mask on every night. You see the mask was poorly fitting and this caused many a tearful night!

Extract;
...The skin on the bridge of my nose had broken down badly due to the poorly fitting mask I was given, it often bled quite a lot. Luckily a few years later I received a much better mask which cured that problem and the bridge of my nose recovered as best as it could but unfortunately I still have a scar there...

Once I received that new mask it was sheer relief. I sleep so much better now! However if you wear a mask a lot there's always something dented, my forehead takes the brunt but it certainly doesn't bleed and hurt like my nose did. It is so important to get the right equipment, there are some horror stories out there of people waiting years for things.

Read about my battles for equipment in my book DMD LIFE ART & ME!

Please visit here to buy my paperback version; http://duchennemen.net16.net/Buy-my-book-s/

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

Only 9 days left!!!!!