Why I do it...

All being well this Sunday I will be featured in a local Newspaper article. It has information on DMD, it has an interview with me and information on my book You can look out for it in the Wales on Sunday paper or go to the media Wales website to see it. I hope it helps in one thing that I am quite interested in that being awareness. That was one of the core aims for my book, because not many 25-year-olds (as I was at the time) write autobiographies. Hopefully people reading my book, especially those who do not know about Duchenne's will ask themselves why so young? After all I am no a celebrity and neither do I want to be one. I am hoping that they would see how much of a totally devastating disease DMD is and can see why time was so pressing.

Extract;
.... I’m such a positive person that giving up and dying never entered my mind at all. The next thing I did was to write on a pad of paper my mother held under my arm. In an emotionally charged moment and through many tears I scrawled in black ink “I’m too Young to Die”.....

Read all about the above story 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

The impact

I talk a lot about how DMD affects myself or others with Duchenne's living like I do but my book has had many unintended consequences. One such consequence was definitely helpful for my health. Every week my mum has carers in to look after me for a few hours and it's vital they don't turn up with colds or infections because I could catch it. You see in my book I go through the time I ended up in intensive care with pneumonia fighting for my life. All of that started from a fairly innocuous cold. One of the leaders of the carer company read my book and has made it more implicit to the carers that they not come to my house ill. My book has helped a few people 'get it' and grasp how dangerous DMD can be.

Extract

...In the afternoon the nurses and doctor...had their usual patient meeting about me. They were quite concerned that my oxygen saturations were not rising above eighty percent. All sorts of drastic interventions were being discussed such as the need for permanent oxygen to be used or to start me on a more invasive ventilator....

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

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

Out of control

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

Extract

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

Find out more in my book DMD LIFE ART & ME!

EBOOK available here; https://www.smashwords.com/books/view/69702

Available on Amazon USA here; http://www.amazon.com/DMD-Life-Art-Ian-Griffiths/dp/1907652337/ref=sr_1_1?ie=UTF8&s=books&qid=1288120811&sr=8-1

Available on Amazon UK here; http://www.amazon.co.uk/DMD-LIFE-ART-AND-ME/dp/1907652337/ref=sr_1_1?ie=UTF8&s=books&qid=1288105302&sr=8-1

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

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

My art can be viewed here; www.artwanted.com/thebigG2005


Foreword

I’m Ian Griffiths from South Wales. This book is a story of my life so far up to the age of twenty five years. I live with and suffer from the ill effects of DMD which stands for Duchenne Muscular Dystrophy. It is a severe muscle wasting disease and a life limiting terminal illness. It won’t kill you in six months in the traditional sense of ‘terminal’, but it’s far crueller than that, it steals every muscle in your body first and then kills you, anywhere up to the age of thirty. There have been cases of men living past that into their forties and fifties but only with drastic interventions such as ventilators and tracheotomies, more on this can be found by reading on.
I hope to cover a few things in this book, from a history of my childhood years to a more detailed history from sixteen years onwards and finally onto my current problems and triumphs. At times things I write may make you smile or may make you pause and think about the seriousness of life with this devastating disease. I really hope there will be a cure but currently for us supposedly ‘older’ guys with DMD (over twenty one), there seems very little hope. If I don’t see a cure in my lifetime, I hope my campaigning helps in some way bring it about for future generations, so another child won’t have to see their body wither and die before their time

DMD logistics

DMD is a bit like a battlefront in many ways and just like a front line needs good supply lines so does a life with Duchenne's. A case in point would be my suction catheters. I've run really low on them lately after numerous attempts to have some ordered they seemed never to be ordered. Thankfully I finally found out they have now been ordered. It got me thinking about all the supplies that one needs when living with DMD. In the beginning there's relatively few supplies needed just electric wheelchairs and the like. Now as an older man with DMD there are many supplies needed such as catheters, tracheotomy neck tapes, tracheotomy tubes, ventilator tubes and connectors, wheelchair supplies and medications! There are probably more but as you can see it's vital the supply lines stay open because without them life would be impossible.

Extract;

...Under the third shelf lie the rest of my large medical supplies such as boxes of suction catheters and a box of Tena pads used to cover my bed and wheelchair. Only recently do I store my mobile hoist by the window,
it creates a better space in our living room (where it used to reside)...

Read more about these vital supply lines 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

Things you miss

There are certain things you can miss with DMD that you would not necessarily expect. I expected walking, breathing and possible heart difficulties but I didn't expect to miss out on playing games with my niece or nephew. It's difficult watching them when I want to help my mom out by occupying their minds. I'd love to draw and help my niece colour in or help my nephew play with his cars. It's also difficult when I'd like to hug them but all I can do is talk which is fortunately really enjoyable. This isn't some pity party because I'm so blessed to have a wonderful family who help me so much. The only way I can cope is with two things hope and positivity. It's not easy but it is worth it because there'll always be things you can do!

Extract
 ... I hope I continue seeing [my niece and nephew] growing up just to see their smiles and carefree joy...


Read more about my family 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

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.

Knock on effects

When you have DMD expect the unexpected! Little did I know the consequences of eating difficulties when they started a few years ago. Thankfully I found out about puree food just in time to save me from dangerous weight loss but that in turn led to something unexpected. There are some foods that can't be blended down and they tend to be the green vegetables, so this led to an iron deficiency. I am probably now going to be permanently on iron supplements because of this which admittedly isn't a huge problem. There was another unexpected knock on effect as the supplement has started staining my teeth which has led to more frequent dentist visits and a more involved cleaning regime.

There are unexpected positive effects too! If it weren't for Duchenne's I would never have written my book or even found my proclivity for digital art. It's difficult to know what if any work you can do with DMD as the barriers mount up but you never know what's around the corner. A job or skill could present itself when you least expect it, when it comes you need to work hard.

Extract
....found a basic digital oil-paint brush to use. My early scribbles and sploshes were just aimed at getting a feel for paintbrush speeds and sizes. I don’t recall what my very first painting looked like but I did show it to my father one dark winters evening....

You can read more about the unexpected things 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.

Talking troubles

Over the last few years I've developed something I really don't like or want. I call it tongue talking! Basically my tongue has gotten weaker so controlling it to form words is increasingly difficult. I'm often repeating myself just to be understood which is quite tiring but I try not to get too irritated by this. The mornings tend to be the worst as after a night sleeping my mouth gets dried out so it's even harder to talk. I don't notice much of this reported in the textbooks so you don't really expect it to happen to you. I know there are technologies to help with this kind of thing but we with Duchenne's like to hold on to our independence till the very end!

Extract
....He tried talking to me (but it’s next to impossible to be heard on a face mask)....

Read more about my daily difficulties 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.

Dream

Available in PAPERBACK and EBOOK versions

I have some pretty weird dreams but last nights was really bizarre. It all started when for some reason I was in America. I was talking to another man with DMD and he had found this special formula that could help someone with DMD. Somehow I was convinced to try it and for months it doesn't do anything. I got frustrated that it was doing nothing but as I was getting angry my arms started moving and I could suddenly walk! I was incredulous at this. The next few days were bliss but suddenly the other man with DMD disappeared and along with him went the formula. That meant I ended up back the way I was. I didn't give up though and my dream turned detective in it's style as I worked out what the formula was. I found out after some bizarre journeys and a meeting with a powerful man that it was nectar from a flower. I formulated it with other natural ingredients but I woke up before I could tell if I could walk again.

I definitely have not given up on a cure as you can see from my subconscious but it certainly wasn't a man made genetic altering medication that could have untold side effects it was all natural. I didn't remember the name of the flower after all that!

Extract;
... I’d love to make my parents a cup of tea but boiling a kettle and pouring the liquid out is an impossible dream at the moment.....

Here's to impossible dreams coming true. I dream quite a lot and my book is full of them, find out more in 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.

Being cold

Available in PAPERBACK and EBOOK versions

Today I had a photo shoot for a newspaper article that's coming up soon about the way I work and features my books. Ironically it was a beautiful day today with hot sunshine but in the September shade it was really cool. Quite quickly my arms were chilled but it wasn't affecting me too much. However I went back inside my house and had more photos taken by an open door with a cool wind funnelling toward me. Then something changed as suddenly my hands shut down on me. I couldn't move my wheelchair control which has a very sensitive stick anyway so I was trapped being even more restricted than normal. My mum had to push my chair into the usual place I sit. It's very humbling to be so reliant on another person. Eventually I warmed up and can access the outside world via this computer. Hopefully the photos will be well worth it! Doing anything with Duchenne's requires hard work and sacrifice but most of all sheer positivity.

Extract
.... I feel the cold very badly these days, I suspect the reason behind this is the fact I can’t move anymore (I’m often found swathed in fleece covers and wraps; our heating is on throughout the year too!)...

Find out how I deal with the cold in more depth 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.

How do girls get DMD?

Available in EBOOK and PAPERBACK versions,

I mention quite a lot now that girls get DMD but how you might ask? Firstly you need to know how girls become carriers. The genetic problem (lack of dystrophin) occurs in the X chromosome. So if the genetic problem  happens to a boy because his genetic make up is XY he will always get DMD. A girl however becomes a carrier because one of her X chromosomes has the fault (their genetic make up is XX), but the remaining X takes over with it's code for dystrophin intact. Carriers can become severely manifesting carriers i.e. displaying some of the same characteristics of full blown DMD but have some sort of functional dystrophin.

Now the main point, (thanks to my friend Julie Gilmore for mentioning the term skewed X inactivation) how girls get DMD. I could be completely wrong about this but my limited understanding of skewed X inactivation is thus, instead of the other X chromosome taking over as per a carrier for some reason the other X does not work.  Hence the inactivation of the code for dystrophin. This may not be the only way girls get DMD but I hope this sheds some light on it. So girls in rare cases do get 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....

My book is from a man's perspective but DMD affects girls and boys similarly so to find out what we can go through please read 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.

Feeling but not moving

AVAILABLE in EBOOK and PAPERBACK versions

I have what I call Duchenne's induced paralysis (a term I invented), I can move my hands and legs only a few centimeters but basically nothing else moves although crucially I still have the ability to feel. That can be a blessing and a hardship. One of the hardest things usually happens at 5AM, that being my legs get terribly itchy. I could wake my mother but I desperately don't want to do that because she needs to sleep. All I can do is tough it out waited for the itch to go. It's a small problem in the grand scheme of things but it sure is annoying! The best part about feeling is the control it gives me when painting using my computer mouse. I need very fine motor skills to follow any sketched lines I drew.

Extract...
.... I indeed do still feel although it’s a royal pain when something is aching or needing to be scratched! When I get extreme back ache whilst sitting in my chair, 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!

Read more about Duchenne's induced paralysis 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.