Out of control

 It is very easy to lose control of your wheelchair when you can barely move. I have an extremely sensitive wheelchair controller, which can be a blessing or a danger. It is a blessing because I can easily drive my wheelchair (when my hands are being cooperative) around my house or while I am outside. This afternoon it was quite positively a danger! Accidentally we tried to move my wheelchair controller away from my hand but we had not turned off the wheelchair. So my wheelchair went completely out of control and I careened into the radiator, thankfully no one was hurt but it did shake me up a bit. It is at times like that  when you feel very helpless! We with Duchenne's have a very tenuous grasp on control. Only one thing being slightly out and we lose control. It makes you thankful for the little things in life.

Extract

....Duchenne Muscular Dystrophy is a rare (approx. 1 in 3500 births in the UK) severe terminal muscle wasting genetic disease that gradually kills all the body’s muscle cells. Firstly it attacks the skeletal muscles, especially the legs, hips, arms and spine....

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

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

Early morning wake up call

Available in EBOOK and PAPERBACK versions

There I was sleeping soundly when all of a sudden my ventilator pipe fell out. That is very worrying as I'm breathing for myself getting hotter and hotter in my face mask. Trying not to panic is the absolute key in that situation. Thankfully a few minutes later mum plugged everything back in and the relief was amazing! You certainly learn many character lessons with DMD, learning patience and self control amongst other things.

Extract;
... the ventilator pipe fell out. Suddenly and unexpectedly I had to breathe for my self, quickly my heart started thumping and I could feel that burning sensation in my lungs again...

The above situation was in hospital back in 2001, so I avoid burning sensations in my lungs now because I'm so much better than then. So it puts that into perspective, for a few minutes I could just about manage :) You've just got to stay positive! Read 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

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

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


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 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.

No Guarantees...

FREE e-book offer still on!!!!!!! Just 7 days to go now!!!!! We are in the last week!

Last night I was in bed thinking about eating. That can be a frustrating experience indeed! I was thinking about eating a lovely juicy red apple and imagining what it tasted like! Then I realised I just simply could not eat that. I have my work cut out coping with this but faith most certainly get's me through.

Extract;
...I was discussing with a nurse about my eating difficulties and they suggested that I try the puree menu the hospital had.....

Like it says above I am fortunate enough to eat pureéd food which means that I can experience the tastes of at least a few things. I know people with Duchenne's who are totally tube fed and I can only imagine how they feel.

It is not all doom and gloom though as I also know a lot of people with Duchenne's who can still eat the conventional way! It just goes to show that they are no guarantees even in DMD. So it is definitely worth staying positive as there is always someone worse off than you.

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 7 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.

Balancing the risks

FANTASTIC FREE EBOOK offer still on!!!! 11 days to go!!!!

By my third visit to ICU in 2001 I was thoroughly fed up of the seemingly endless procession of hospital visits I endured. I was offered the solution of a permanent mini tracheotomy which I accepted after some thought. I was concerned by the risks of further infection but the build up of secretions in my chest was a bigger problem. On balance it was the best option to take at the time.

Extract;
..However he thought the benefits of clearing my airways certainly outweighed the risks posed by infection as long as we used the correct clean procedure..

It turned out really well for me! I've been to the hospital a lot less and it certainly gave me my life back. Before, the risk of a return trip to ICU weighed very heavily over my head. I'm very grateful to still be here!

Read through my tough year and look at the way everything turned out 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 11 days left!!!!!