Thinking about others

Available in EBOOK and PAPERBACK versions

DMD teaches you one thing in particular and that's thinking of others. When I see my mother busily going about her daily routine, washing, cleaning, preparing food which she puts hours into and generally working very hard I try not to ask for lots of things. Once I'm set up on my computer I'm pretty much set. You need to think of others and I certainly could do a lot better on that front myself but it's a good life lesson.

Extract;
...My mother is a mum first and a fantastic carer second and we are really close. I cannot tell you how grateful I am for all she has done and continues to do...

When you are so dependent on others you need a good working relationship and observing others needs is vital. An example would be to ask for help or a drink etcetera before your caregiver/parent sits down to rest or eat. It's not easy and sometimes if you desperately need something then you have to ask, but there's always a right way to ask.  Read more about those working relationships 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.

A tribute

We've lost a few brave people with DMD over the last week. It is heartbreaking when anyone with DMD dies but some weeks it's extra hard when more than one go.

Here's a tribute from my book;

This is a tribute to all my fallen comrades
They were not slain by weapons
Nor war wounds but still heroes to the end
Taken by the dark claw of this deadly muscle disease
They were strong to the fore
Strength to their core while all around muscles receded
They were workers, businessmen, artists and friends
An inner power of towering energy known no bounds
Great public orators letting all know their struggle to be equal
To be equal in standards of care, equal in love
Equal in society in a world not geared for them
From innocent childhood to paralysing adulthood
Misery not their style, happiness and warmth their comforter
No pity for them please
Just remember them
The brave forgotten few
Our brothers, our sons, our fathers, our friends.
Taken before their time

(Girls can be affected, this was just for the guys at the time)

There are more comforting words and great hope in my book DMD LIFE ART & ME.
This isn't all about selling books I mean every word, we're in this together.

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.

Making the best out of a bad situation

Available in EBOOK and PAPERBACK versions

I always try to look for the positive in every situation. What comes to mind is a trip to a hospital appointment to find out how bad my breathing was etc and afterwards I went to a marina and got some artwork ideas. It was a perfect distraction to the humdrum of DMD. Whenever I get ill one thing I rarely seem to lose is my sense of humour. After all having a laugh can help you feel better!

Extract;
....I’ve always liked sunsets and sunrises and had a really pleasurable time making this [artwork]. It just goes to show how positive reinforcement can lead to even greater things....

The first piece of art I uploaded to an art website received positive feedback even though the DMD I have limits the types of art I can produce. Never let limits hold you down, there's always an alternative.

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

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.

Warm and Positive

Available in EBOOK and PAPERBACK versions

DMD LIFE ART & ME! available on amazon and as an e-book. Remember that half my proceeds go directly to a Duchenne charity. Buying this book will help more than just me! It's not all treatment seeking though, there are some fantastic education programs tailored for children with DMD, and empowering activities for those older individuals! So why not help out and feel good learning more about DMD!

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...

This would be a great gift to pass on to those who know nothing of DMD. I explore most every part of Duchenne and most of all it's warm and filled with positive thinking. Find out more in my book DMD LIFE ART & ME!

BUY HERE;

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.

The things we need to remember...

Available in EBOOK and PAPERBACK versions

Last night I meant to charge my wheelchair, but lo and behold I forgot. It'll last to tonight but back in my school days it was a nightmare of slowing to a gradual creep by the days end. Getting a push wasn't out of the question either. If you haven't had the pleasure of pushing a power chair, it is really heavy!

Getting to my age 27/28 and living with DMD I need to remember quite a lot, is my ventilator charged, is my wheelchair charged, do I have enough suction catheters and gloves and many more! Far more important than remembering those tiny minor things.

Extract;
...two ladies came over and saw a wire hanging loose from my battery. She plugged it back in and my power lights flickered back into life. I breathed a huge sigh of relief and thanked the kind lady. I then went on my way slowly avoiding the bumps on the uneven pavement. I got back home a few minutes later saying very little to my mother. The joys of electric wheelchairs!...

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

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.

When adaptive technology fails

Available in EBOOK and PAPERBACK versions

Last night my adjustable bed would not work, so I spent the night in the exact same position, thankfully I slept with no problems. Although it is very annoying when you cannot move to get comfortable in bed. It is a good thing that I had a working air mattress or I might have begun to develop a pressure sore! When your adaptive technology works properly, you can be lulled into a false sense of security, thinking you can take on anything. That is the same for every human being but with DMD these things can quickly become life-threatening, especially if you're ventilators stop working etc!

Extract from 2006;
.....My personal problems all seemed to be leveling out around me but as I know only too well life tends to throw a spanner in the works. That spanner in this case was my old grey lift. It had been my loyal servant for a shade over a decade, but time and wear had started to take its toll...

It is all about your attitude in these times that will get you through and in my case a strong a reliance on faith. If you have a positive outlook and hope then you can overcome quite a lot. Hopefully you can see within my book how that positivity comes through especially when times get tough.

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


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.

You've got to laugh

Available in EBOOK and PAPERBACK versions

My mum has a saying, "You've got to laugh or you'll end up crying". How true that is these days! There's a lot with DMD that can certainly make you upset and sometimes you can't avoid that. Although when happy moments come they are often remembered and thoroughly enjoyed.

We still laugh at the time that I was flung off a horse (I landed in soft snow), the horse ran off and my dad was running after it!

Extract;
...I was out riding; my father and cousin .... were walking beside me. After a gentle ride past some snow banks the horse suddenly got startled and threw me off! I landed in some soft snow in a daze. My cousin was standing there laughing as my father chased after the bolting horse, I can remember his hat falling off and flapping behind him in a comical manner....

There's always something good to smile about in life, finding those moments is the hard part!

Read through my happy memories 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.

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.

The benefits of doing something...

Available in EBOOK and PAPERBACK versions

There was a temptation in my life to sit around and do absolutely nothing. That's a quick way to give up become depressed and full of worry looking forward to the end of my life. That's something I chose NOT to do. That was one of the best decisions in my life. Interacting with friends and family, working and striving to improve has completely turned my attitude around. It is definitely worth it to DO something good.

Extract;
...What gets me through each day is my faith, the family and friends I have who understand everything DMD, my art, my writing and listening to music....

I know autobiographies aren't for everyone but even if your not sure give it a try, it's full of information about a disease hardly anyone knows about and has helpful positive tips. Plus half of my proceeds go to a DMD charity so you could be helping more than just me :) All of this just by buying 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.

The benefits of a positive attitude

Available in EBOOK and PAPERBACK versions

When a DMD problem hits, such as the loss of walking ability or transitioning from breathing to assisted ventilation, depression and distress are very easy traps to fall in to. A positive attitude can change your outlook very much, thinking what you still can do in my experience really does help! A negative attitude can quickly lead to depression and can even precipitate further declines in health.

Extract;
....Somehow I’ve developed a strength or resolve just to carry on with a positive demeanour. It is so hard to keep the ‘brave’ face on; it’s as if God has just given me enough to get through each problem....

Read my battles through depression and positivity 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.

Small corrections

Available in EBOOK and PAPERBACK versions

I've been having troubles driving my wheelchair lately and I am looking for a different easier way of controlling it. In the meantime a wheelchair services man just tightened up my current controller for me. It had more play in it than a worn out steering column on an old car! It has made a world of difference having it tightened, driving is so much easier now!

Extract;
...my father and I messing around with a cricket ball and my mother resting under a parasol. I was holding a small piece of wood which was light and straight, whilst my arm rested three inches in the air on a soft foam pad that [my sister] had made...

The small correction allowing my arm to rest on a piece of foam helped me play a game just a few years ago. It only takes a small correction to make a life that bit easier.

Read more about those little corrections 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


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.

Distraction to DMD

Available in EBOOK and PAPERBACK versions!

When I was younger and DMD wasn't biting much going on day trips and vacations was a great distraction. We still can see and think and experience transcendental things, just a change of scenery can offer new inspiration.
So numerous were my good memories that to fill my book with them would have taken up to much space! So I summarized.

Extract;
...I liked to go on day trips away from our main holiday destination to visit museums and other interesting sites. I’ve seen an airplane museum, train museum and various
shopping areas. I took my chair (reluctantly) on a canal barge and on a boat cruising up Lake Ambleside in Lancashire. I saw Alum bay on the Isle of Wight, with its beautiful multi-coloured sands...

It's good to experience good things! Read more about my adventures in my book DMD LIFE ART & ME!

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

EBOOK available 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.

Where there's a will theres a way

Available in EBOOK and PAPERBACK versions!

For the last few days my ventilator power cable hasn't been fitting in snuggly so as a temporary fix I suggested to my mother to tape it in place and it worked! This morning the problem was fixed by a respiratory nurse thankfully! You really do need to think very quickly when something DMD related comes up.

My dad made me a wheelchair table when I was having difficulties, somehow tables weren't commonplace then. What a great Dad I have!

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...

Read more about the workarounds we figured out in my life in my book DMD LIFE ART & ME!

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

Get you very reasonably priced EBOOK 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.

DUCHENNE AWARENESS DAY today!

DUCHENNE AWARENESS DAY today!

I've had DMD for just shy of 28 years as you know my book covers the first 25 years. So what exactly is DMD?

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. It quickly moves on to abdominal muscles, meaning boys [and rarely girls] are usually in a wheelchair between the ages of seven to ten. Finally it attacks the heart and respiratory muscles. Eventually leading to an early death [more than likely] due to cardiac or respiratory arrest...

It's a devastating disease that has robbed many parents of their children. I have lost friends to this awful condition. What gets me through is faith, not any faith but the faith that comes from a higher power. I believe a better future IS coming sooner than anyone could imagine. In the meantime any help you can provide to those with DMD is really appreciated. 50% of my amazon proceeds goes to Action Duchenne a DMD charity. My book is available at Action Duchenne's webshop where 100% of the proceeds goes to them. Thank you!

Action Duchenne webshop; http://www.actionduchenne.org/result/AD_ShopProduct/24455.jsp?n=55

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.