My super mum

As most of you know I have DMD but some may not know that I also have a mini-tracheotomy in my neck which means secretions that regularly build up in my chest can be removed. This means that I need suction catheters fed down my throat through this mini tube to clear away the excess mucus. The person who does this most is my dear Mum and my does she work hard.

Each time I need suction it usually takes an hour to complete and it may need doing three times or more throughout the day. It’s a boring laborious task but I’m very grateful because I wouldn’t survive for long without it. It reminded me the other day of a Victorian prison task whereby you crank a handle turning a numbered dial to 10000. Suctioning is an everyday thing and seems never ending but unlike the prison task it certainly isn’t pointless.

My Mum is a real star for doing this even when she doesn’t feel up to it. Thank you Mum it does mean so much to me and thanks for all the myriad things you do for me.

  

FREE ebook offer extended by two days!

FREE EBOOK offer EXTENDED by 2 days so it's still 8 days to go!!!!!

Thanks to everyone who has been downloading my book I very much appreciate it!!! Spreading awareness of this devastating disease is one of my aims for this book because it is so generally unheard of.

Extract; ...In case you’re wondering what causes Duchenne Muscular dystrophy, I will explain it in terms of how it affects me. There is a protein called Dystrophin located in
everyone’s DNA, that is missing or damaged in an affected male, it affects mainly males [occasionally females] because it’s an X linked recessive error; males only have one X chromosome. This causes the muscle fibre membranes (Dystrophin acts as a shock absorber) to get over-stressed and die off...

Read why this lack of dystrophin is important in my book DMD LIFE ART & ME!

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 8 days left!!!!!

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.

Helpful adaptions

FREE ebook offer still on!!!! 24 days to go. More information below!

Like I have previously mentioned resourcefulness is a vital skill when you live with DMD. This is especially true when you need to adapt to something. For instance when writing using a normal table I used to get tired so my parents found me an angled desk and that really helped me. Another example was when my neck became tired and made eating and breathing difficult, so my dad rigged up a headrest which I still use today!

Extract;
...My father made me a table; it was made of wood and had metal tube to secure it to the chair. It made writing in my chair much easier; although I was a slow writer anyway....

I'd like to thank my dad for making me a lot of these adaptions. Read more about these adaptive solutions 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 24 days left!!!!!

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.