Things you really miss

I remember in my friends film "A life worth living" there was a part that I can relate too this week. I was in a position where I really needed to comfort someone and the one thing they needed was a hug but I just simply couldn't. It makes you feel utterly inadequate, all I could do was say "Are you alright?" and that just seems silly now. Back to that film, my friend met a couple whose son was recently diagnosed with DMD and he was in the same position as myself unable to hug them. This is something that isn't mentioned in an ordinary DMD textbook with its list of cold facts. When you live through this disease it hurts mentally as well as physically.

The one thing I can't do is to get down in the dumps about it. It is incredibly hard to do this but often looking at the things you can do helps. On many occasions I've made digital art gifts to give to friends and that certainly does help because I love giving. Whatever way you do it stay positive!

Read more in my living textbook autobiography 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

My new Ebook Poetic Diversions available to buy here; https://www.smashwords.com/books/view/206857

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

My art can be viewed here; www.artwanted.com/thebigG2005


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   

Incommunicado

Available in EBOOK and PAPERBACK versions

Last night whilst on my ventilator my tracheotomy tube opened and air was escaping from my throat. I buzzed a pager I have and my dad came in, I had enormous trouble telling him what happened because with an open tracheotomy I am barely able to speak. My mum then came in and again the same problem, eventually after shouting neck (it didn't come out as a shout) my mum heard and corrected my tracheotomy tube.

It's rarely mentioned in textbooks that communication issues may arise. I've been having talking problems lately as my tongue weakens, it's one of those unexpected DMD 'surprise's'.

Extract;
....Having my face enclosed in a mask presented an unforeseen problem, due to my voice being quite weak it was impossible for me to call my mother to help me out of bed. We solved this problem by purchasing a doorbell with a wireless button press unit. Unfortunately this was only a temporary measure as my hands became weaker and weaker meaning I could no longer press the chunky doorbell button. I now have an environmental control....

Find out more about the unexpected surprises rarely mentioned in textbooks 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.

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.