Hoist memories

Available in EBOOK and PAPERBACK versions

Now that my hoists are both being replaced I started thinking about all I'd been through with them. I first remember using them when I was ten, when everything was new and it came with a blue sling that had metal attaching hooks. I remember falling out of an inferior sling thankfully not hurting myself! I've had thousands of baths and bed time routines through happy and sad times.

Extract;
.....hooks the grey sling surrounding my body onto the metal crossbar hanging from the hoist and I’m raised up into the air. My arms are carefully positioned on my legs so that my shoulders won’t hurt. Next I’m moved over my wheelchair by the touch of the button and carefully lowered in......

Here's to more memorable moments to come when my new hoists get installed! Read more about my hoisting 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

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.

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.

It's all about positioning

Available in EBOOK and PAPERBACK versions

I was put in my chair this morning and I was slightly out of position but I thought I could manage all day. Sadly it was just too painful. For most people changing position would be ridiculously easy. For me though, it just means yet more work for my mother.

To change my position I had to take a ride in my lift to get to my room and the working hoist up there. Then I was hoisted in the air and repositioned. Finally I was comfortable and could start my day!

Extract;
....I need to call my mother and she repositions me using my hoist. What takes
five seconds for the non disabled, takes me ten minutes of re-jigging! I’ve just got to make sure I get placed in my chair correctly....

It's amazing what we take for granted. Even those with DMD like me take a lot for granted but positioning is certainly an exception. Read more about positioning 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.

Great Inventions

Available in EBOOK and PAPERBACK versions

There have been some fantastic inventions in the world of Duchenne that have prolonged life by many years and offered many improvements to the quality of life. Ventilators have really come along from the days of the iron lung. The choices are amazing now. Non invasive ventilators using discreet nasal masks that use the natural way of breathing instead of tracheotomy tubes (although they help quite a few) have been very important in lengthening life. Something that isn't medical but has made my life easier has been voice recognition software. I wrote my new book using that. There are so many more inventions out there, the options are endless!

Extract;
...I came across an even better art program. It ... featured a very strange drawing of a hand with many fingers on the box. It was most definitely eye catching and I
became even more excited......

An art program available on the computer was so very liberating and definitely a great invention for me! You can read about the great inventions 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-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.

Hoist hassles

Available in EBOOK and PAPERBACK versions

My dependable bathroom hoist has broken down after 20 years! It probably could be fixed but the hoist engineers aren't familiar with repairing it because of it's age. It amazes me how pervasive the throw away culture is now, if it's a little old or needs repairing instead of being innovative people would rather throw things away. Fair enough for something over 80 years but 20 years is nothing.

Extract;
.... 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....

Now I have to wait until a new one is fitted and that will be a big relief and make my mothers caring job a lot easier! Read about my hoisting adventures 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/

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.

Introducing my new Ebook!

I recently shared a link to my new poetry book Poetic Diversions which you can see just below this post. I realize this group is for my autobiography DMD LIFE ART & ME but this new book is certainly relevant to Duchenne's. There are roughly ten poems focusing on DMD in one chapter alone! My particular favourite is a dedication to all those young children living with DMD who stay so positive through everything that's thrown at them.

Here's an extract;
....The next poem I would like to share is called; I know what strength is:
I know what strength is...
It is that metal, that mental metal,
It is toughing it out on that lowest day but still you stay,
It is when all hope is gone but you smile through it, holding on,
Not the reserve of body builders, its just you, me and the meek,
Battling the system, but we will them, change it, make it right....

You can read the rest in my new Ebook Poetic Diversions right here: https://www.smashwords.com/books/view/206857

As ever you can still buy my five star rated autobiography DMD LIFE ART & ME 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

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

Foreword to DMD LIFE ART & ME


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.

Working wonders

Available in EBOOK and PAPERBACK versions

I am always impressed at the guys and girls who live with DMD that get jobs. Some are employed by forward thinking companies and many work for themselves. I work for myself at the moment, I've written my autobiography and my second book comes out in e-book format very shortly! I'm also an artist too.

Recently I was impressed by a 20 year old who attached a lawnmower to his wheelchair and started earning some money mowing his local neighbourhood! That is really inspiring to all with DMD!

Extract;
...In fact many people have commented ... that the painting [entitled port and ornaments] looks photo realistic even though I wasn’t aiming for that. God has blessed me with this artistic talent .... You can see all my art at artwanted.com, just type in Ian Griffiths [in the search box]....

With the right attitude and drive anyone can work even in these extremely tough economic times. One should never give up! Read through my own working wonder called 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.

Small Victories

Available in EBOOK and PAPERBACK versions

As I was waiting to go to bed my sling strap was resting on my arm in a really irritating and itchy place. So I decided I would try to move it myself. What an arduous task indeed! I moved my hand the few millimeters that it can move and moved my leg the few centimeters it can move. After a battle for two minutes or more I finally won! I got it to move, what a victory it felt like, it even made me giggle!

Extract;
.....[One summer a few years ago] I was trying to hit a red cricket ball that my father was gently throwing towards me.  With a swift action I just about managed to take a small swing at the ball; I could only move my hand an inch or two [because my arm was propped up]. The ball would just hit the wooden stick and drop like a stone onto my clear plastic wheelchair table....

It is always a struggle moving the tiny amounts that I can but it's so liberating to do something for myself! That's why it is so important to focus on what you can do whether you have a disability or not! Read more about my small victories 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.

Downs and Ups

Available in EBOOK and PAPERBACK versions

Yesterday I had a visit from a physiotherapist. It was the first time I saw one in about 11 or 12 years. That is the state of Duchenne care in Wales.  Anyway the physio began to look at my hands, and it wasn't good news. You see my hands have taken the shape of fists after many years of games console use between the ages of 17 to 21. After I could no longer play my games console my hands weren't really stretched because I had no physio and I wasn't sure how to tackle them. They continued to get worse and now the physiotherapist says they are too far gone to help.

Extract;
....It’s impossible to straighten my fingers, trying to do so will cause me a lot of pain and could break a bone....

It was not all bad news because my feet were doing very well. I had surgery  when I was nine years old, to loosen [by cutting] my hip flexors, hamstrings and ankle tendons. This combined with the use of splints for a good many years has ensured that my feet are comfortable whilst I sit in my wheelchair. So it was a day of downs and ups! On a positive note I can still use my mouse even though my hands are mangled! Read about my positivity through disasters 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.

The great leveler

Available in EBOOK and PAPERBACK versions

The great leveler...

They used to say smallpox was a great leveler but DMD is very similar. It doesn't matter whether you are rich or poor, from the northern hemisphere or from the southern hemisphere, white black or yellow DMD affects all cultures. Anyone could have a child with DMD, it can happen spontaneously as well as genetically. Mercifully it is NOT contagious.

Extract;
....These [blood tests] showed extremely high Creatine Kinase levels and [the doctor] thought I had something called Muscular Dystrophy .... Creatine Kinase is an enzyme, which when released in elevated levels could indicate amongst other things muscle disease. A few weeks later my parents were told to take me for a muscle biopsy .... It was explained to my parents that my biopsy result came back positive for a disease called Duchenne Muscular Dystrophy ... [a] severe terminal muscle wasting genetic disease that gradually kills all the body’s muscle cells...

That was all back in 1986 for me. In amongst all this bad news there are overwhelming positives. Especially the attitude and sheer determination found in all those living with DMD! The exceptional parents and caregivers that go that extra mile and the awesome interconnected DMD community. Read more about positive determination 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.

Too many alarms

Available in EBOOK and PAPERBACK versions

The worst time for a power cut has to be 4 AM. I had my mask on and everything going black with no air on is certainly worrying. Eventually I had my mask removed and power was restored quickly phew! If the power goes off everything alarms, my air mattress, my special telephone and my ventilator all whine away. Once power returned everything went quiet but there was one alarm still wailing.

Extract;
...Suddenly and unexpectedly I had to breathe for my self, quickly my heart started thumping [thankfully] the Nippy wailed out its alarm and I was quickly
reunited with the cool pressurized air that I was .... accustomed too....

Back to this mysterious wailing! We couldn't figure it out, convinced it was the bed we tried all we could to stop it. Eventually we tried switching off my ventilator, and blissful silence, you see we thought it was already off! That was really funny even at 4:30AM!

These alarms aren't mentioned in the DMD handbook if such a thing existed but you can read about those often unmentioned challenges 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.

Ventilator trials

Available in EBOOK and PAPERBACK versions

Last night the temporary ventilator I was using whilst mine is serviced just wasn't working right, not delivering me the correct amount of air. I thought I was suffocating so I had to use my daytime ventilator. All this happening at 3 AM. Trying to alter the settings took an age but mum & I figured it out in the end. Nevermind a touch screen phone, a touch screen ventilator is the way to go!

Extract;
...I have quickly gone from roughly ten hours at night and three hours in the day to [twenty] hours per day on my ventilator....

I always remember to be thankful for these ventilators as they've been helping keep me alive for the last 11 years. Read more about my ventilators 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.

Tracheotomy changes

Available in EBOOK and PAPERBACK versions

I can always tell when I need my mini tracheotomy tube changed because I tend to need more chest clearances. It can get annoying feeling your chest fill with fluid every few hours. The first days of my tracheotomy adventures were frantic, as the nurses were completely new to regular replacements. At first I visited the hospital every month to get it changed.

Extract;
...As mentioned in the last chapter my mini tracheotomy has to be changed every four to six weeks. Initially [2001/2] we went back to [the hospital] every month so that [the] doctor ... could perform the renewal process...

When I tried going home to have it changed that's when the frantic happened as I would have to rush back to hospital if anything went awry. I'm grateful for their help now as everything is stable and if I need to put up with a few extra secretions then it's a small price to pay for reliable changes.

Read more about my tracheotomy adventures in my 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.