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

Hoist hoorah

Finally I have my new hoist! We've had some teething problems with it, but we have a workaround and that has really improved the situation. It is so good to have that little bit of freedom back in my life. Having a bath was a great treat after weeks without even that basic thing! I had a similar feeling when my new lift was installed back in 2006, it was a mixture of relief and gratitude to those who helped me. There are always good feelings associated with DMD as well as the often negative you have just got to find them and cherish them. Like they say you can't appreciate the positive without experiencing the negative. Duchenne's certainly taught me that.

Extract
 ....The lift proper was yet to be installed and it consisted of a through floor plate which concealed the lift while it was downstairs and the open plan metal car. I was feeling quite excited that I was finally getting a brand new modern looking lift put in...

Read more about the positive triumphs 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

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.

Modern day machines

I've had my new hoist installed as recently as last Friday but there continues to be a mystery problem. The fuses in the transformer keep blowing after 2 attempts to fix the problems we're none the wiser. It all reminds me of a stressful period I had when my through floor lift. When it was replaced it took 3 months and a temporary lift that battered my elbows before it was installed and ready. Hopefully this won't be the case this time. They really don't build things to last these days but you gotta work with what you have. It's so important to have these machines, it's amazing because fifty years ago who would have dreamed of a ceiling hoist so here's to it being fixed!

Extract from the chapter the lift debacle
...The week ended in total despair and panic as we were told something awful. A council representative dealing with our lift renewal informed us that the lift company had pulled out. Apparently it was too difficult of a job for them so they gave up; leaving me literally high and dry!...

Read more about what happened during my lift debacle 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.

Dependence

Available in EBOOK and PAPERBACK versions

When the things I need to help me live a basic comfortable life work then everything is going great and I feel I can do most anything. Things like a working blender so that I can eat, my lift, my adjustable bed, my wheelchair and a few other things. A couple of days ago my lift decided to break down and that left me stranded in my room until hopefully tomorrow. This has made me think about the dependence an adult with DMD has upon these basic elements.

Extract;
...It’s easy for them to pitch a tent and live up a tree getting closer to nature, but for the dependent people like me we need our wheelchairs and ventilators charged and reliable power for suction machines, hoists, beds, mattresses and food blenders. The drastic changes proposed by environmentalists and governments never factor in these problems. They just talk about ‘keeping the lights on’ but for me and others in similar situations it is a question of life or death....

When one of these elements fails, it can have a huge impact upon my life. It just goes to show that there are more important things than just the Internet or Facebook. A close-knit family really does help during these times of temporary emergency and the help of a few kind individuals. There is always hope!

 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.

It's how you look at it...

When I first needed a lift fitted in my house we were grateful for the local councils help but they soon complicated things! To them just getting a lift in was their only priority. They didn't care where it went in my house suggesting our living room! It would have blocked the window and completely obstructed our lives.

Extract;
...There was a huge fuss made by the council, originally they wanted us to have the lift installed in our living room! That would have been highly inappropriate and would have blocked the light entering through our front window. It would be difficult welcoming people into your main living area with a hulking steel box in the way...

My family had to pay for a extension to the house and that housed the new lift. It is all a question of how you look at it!

Read more about a different perspective in my book DMD LIFE ART & ME!

Available at Amazon right 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

You can get your reasonably priced EBOOK version for $3.00 here; https://www.smashwords.com/books/view/69702

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.