New isn't better

I've been having problems with my hoist for a few months and my lift door has decided to play up over the last week. It just goes to show how new isn't better. Both of these were relatively recently installed the lift about 6 years ago and the hoist 12 weeks ago and both have had problems from the start. My old equipment lasted nigh on 20 years without any massive problems until the end of their working lives. The reason they couldn't be fixed was a belief that they were simply too old or that nobody could repair them which seems quite defeatist. Hopefully the latest small problems will be fixed soon but the quality just isn't there these days. One day a great sense of quality will be restored and I can't wait!

Read more about my equipment dramas 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

Never Ending

Available in EBOOK and PAPERBACK versions

My mum works incredibly hard every night. After an hour clearing my chest she has seemingly a never ending list of jobs to do. She truly is amazing! She treats my hands, feet and ears which need cleaning and some small medical treatments. Then she cleans my teeth and puts me in the lift. After arriving in my bedroom on the first floor she puts me into bed, puts my ventilator on and sometimes charges my wheelchair. THEN she can finally go to sleep. On a good night we might end up sleeping by 3AM on a bad night 4AM. I need to try harder to go to bed but it's difficult for both mum and me.

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...

Read more about how this diagnosis affected my mom 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/


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.

Just quite right

Available in EBOOK and PAPERBACK versions

I love getting the perfect equipment for my needs. I've had a V shaped pillow for about 10 years and I loved how comfortable it felt. Sadly it was looking the worse for wear and I had to buy a new one. It's difficult to let go of something really comfortable. It's very rare to find perfect DMD equipment so letting go is hard.

Extract
...I soon got comfortable in this new chair but I was so fed up with the constant equipment entering my life all the time. Just when I had gotten used to a piece of equipment I was measured up for a new item...

When I was a young child I was so very resistant but now if I really must do something then I will. Happily I've found another perfect V shaped pillow which is comfortable and awesome! Read more about the changes in my life 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-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.

Change

There are some changes that are very much welcome. For instance, starting a new art project, starting a new job, being old enough to understand and learning new skills.

With DMD change is like a double edged sword. I've experienced periods of positive change but I have also experienced a lot of negative changes. Losing the ability to walk, the ability to move my arms and one of my worst bug bears new equipment entering into my life.

I understood that this equipment was much needed but it's the kind of change I did not like. It's a constant reminder of loss and the relentless need to keep getting updated equipment really annoyed me especially in my younger years.

Extract;
...Just when I had gotten used to a piece of equipment I was measured up for a new item. There’s no choice with DMD you either had to change or be in pain from an undersized piece of equipment...

Find out more about my struggles and triumphs surrounding change 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 25 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.