Looking for school

In the United Kingdom, choosing a secondary or high school is a daunting task. For those with any disease including DMD it can be a nightmare of accessibility, suitability, care needs and the right curriculum.

My primary school was a feeder school to a local secondary. Sadly it all fell through for me as the building wasn't suitable. In their infinite wisdom (tongue firmy in cheek) the primary school made me sit through the introduction process to the secondary school. It consisted of telling us all how fantastic this school was even though I couldn't go! So...

Extract;
...It felt like a cop-out at the time. All of this meant I had to look elsewhere, which was very daunting for me...

I eventually found a secondary school that was suitable but it meant sacrificing my friends. Read through my secondary school selection process and see where I ended up my book DMD LIFE ART & ME.

Please visit here to buy my paperback version; http://duchennemen.net16.net/Buy-my-book-s/

Don't forget my free e-book offer!!!!! For one month only until the 26th of May my e-book version of DMD LIFE ART & ME is free, you can get your FREE version here; https://www.smashwords.com/books/view/69702

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.

Sometimes quick, sometimes gradually

The muscle deterioration in DMD can oftentimes be slow but sometimes it's amazingly quick. Although I absolutely despised stretches (on my legs), they really are necessary to keep discomfort and pain at bay in the younger years.

During my vacation of a lifetime over in Florida, I did not do any of my stretches and consequently paid the price later on when I returned home. You really get to see how quickly DMD can deteriorate when you don't do what you need to do. Many people in the know will tell you that you should never stop stretches as a treat.

I noticed that only after two weeks it was excruciating to go in my standing frame.
Extract;
...The pain was immense after the holiday because we didn’t really do my stretches often enough (it was a vacation after all). It was absolute torture standing again in my ‘clickers’. My knees were burning; it felt like my ankles were braking. I would plead with my mother to get out of the frame but I had no choice as it was part of my physio regime...

Well I really wish I took the advice that is being given now! However currently (age 27), I don't have physio any more, partly because it would hurt and partly because I have no physiotherapist. Post 18 care leaves much to be desired in Wales!

Don't forget my free e-book offer!!!!! For one month only until the 26th of May my e-book version of DMD LIFE ART & ME is free, you can get your FREE version here; https://www.smashwords.com/books/view/69702

If you still prefer the look and feel of a real book then please visit here to buy my paperback version; 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.

DMD life art & me Ebook now FREE

Great news! For one month only my EBOOK of DMD LIFE ART & ME is FREE! That's right it's absolutely free!! It won't cost YOU a penny! All you need to do is visit smashwords.com and buy the version that suits your device!

If you know someone who might be interested in learning about DMD, then point  them in the direction of this fantastic offer!! It will cost them NOTHING to learn about the devastating effects of this disease and to find out how someone lives with it positively.

Please visit here to receive your FREE ebook; https://www.smashwords.com/books/view/69702

(Offer lasts until the 26th of May, then a price of $3.00 will apply)

As ever if you are a fan of the traditional book, then you can buy my paperback version for the very reasonable price of £9.99 ($18.99) 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.

DMD helped raise me above the clouds

It's not all pain, surgeries, aches and difficulties having DMD. It has led to amazing things, I've visited a former prime minister, seen an MEP at school, been on a fantastic vacation to America amongst many other things.

One such occasion was when I was offered a ride in a helicopter, I only had this opportunity because I had DMD. So you can see Duchenne has its benefits, although it can never really make up for it but you do get wonderful memories!

Extract;
...Suddenly the engine powered up with a thunderous roar and the rotors started
whooshing by very swiftly, turning into that familiar black blur. We quickly took off, climbing higher and higher; rising above thin clouds. All the people disappeared into distant dark specks. The helicopter tilted forward and we were off, about to explore the world around us...

Explore more of my wonderous memories in my book DMD LIFE ART & ME, buy the ebook and paperback versions 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.

Operating Opinions

 During a life with DMD you may (not always) encounter surgery. It may be hip, knee or ankle releasing, spinal surgery, feeding tube installation, tracheotomy installation or even bowel surgery. I know I've had 3 procedures tried, only 2 successful, that being a mini tracheotomy and hip, knee and ankle (H/K/A) surgery.

The H/K/A surgery left me in plaster six weeks, it was an absolute age for a nine year old! Plaster is really awkward when you have trouble moving anyway and you need resourcefulness to find a way to accommodate it. My dad made a tray for my legs to be supported on and figured out a way to operate my lift so my feet fit in.

Once the plaster was off I was very happy, I smile now looking back as my father decided to poke my ankle after it was released, it felt like jelly!

Extract;...It wasn’t long until my plaster was removed. I was feeling very tender as my father pressed his finger against my ankle, but at least my legs were much
straighter now. I then needed intensive physio for a few more weeks...

Read about my other operations and I know many can relate to them in my book DMD LIFE ART & ME; buy my ebook and paperback versions 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.

Energy Management

When I was about eight or nine and first in my wheelchair, school used to be very tiring. I have heard that muscles in those with DMD are working nearly at 100% of capacity just to stay functional. Eventually because of cell death the muscles turn to fat and connective tissue. All this energy usage including just moving around may make us tired.

I know that at that age I could not focus in the afternoons and my learning would be affected.
Extract;
...In school things were going well, but afternoon tiredness was really having an impact on my learning. I couldn’t take much in and my spelling would become terrible. The best time for me to learn was in the mornings; otherwise I would have been too tired to absorb new information...

By the time I grew older my energy levels stabilized as muscle damage slowed because there simply was less of it remaining. Although that sounds bleak it did mean that I stayed awake in secondary (High) school and I really enjoyed learning!

For every bad thing there can be unexpected benefits with DMD.

Read about more unexpected things in my book DMD LIFE ART & ME; buy the ebook and paperback versions 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.

From lifting to hoisting

My mother for years used to lift me from my wheelchair to bed and other places. It used to put quite a strain on mum and me.

Extract;
....My mother lifted me into bed and I quickly fell asleep; having enjoyed my wonderful day in London...

At about ten years old we had ceiling hoists put in, they were and are awesome for lifting and a whole lot safer when used properly. I couldn't recommend them enough to make life so much easier!

Read about some of the other labour saving devices in my life in my book DMD LIFE ART & ME, buy the ebook and paperback version 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.

Chilled out!

I feel the cold terribly even in the summer. Even though summer is a very loose term in Britain! I often say I have no blood in me. With cold hands I can barely move the computer mouse it's as if I'm moving through cold treacle. brrrr!

Even covered in blankets I'm still cold, but once the central heating kicks in I'm moving far more freely. Waiting to get warm is always annoying but you learn patience and tolerance with DMD.

Extract;
... I feel the cold terribly when sat outside [or inside lately] (I’m sure I don’t have any blood!) so I try to get my whole body covered. All you can see is my head floating above my black blankets.....

Read more of these patience building exercises in my book DMD LIFE ART & ME; buy my ebook and paperback version 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 back bone's connected to the...

I used to have spinal check ups every few months as a teenager until they were withdrawn. I used to have terrible pain during the scans as my twisted spine pressed against the x-ray plate. I was never given the option of surgery, it was only discussed.

Extract;
....routine appointment to see the spinal consultant. I underwent the same process of my father dismantling the wheelchair back and the X-ray plate being wedged in....

It is definitely worth checking out the spine because it can deteriorate really quickly. Surgery is not necessarily the answer for every one but monitoring is a good thing to do. Read why I never had surgery in my autobiography DMD LIFE ART & ME, buy the ebook and paperback versions here; http://duchennemen.net16.net/buymybook.html

Thank you!



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.

Unmistakably Mom!

Lots of mothers with sons or daughters living with DMD are fantastic! They are the best carers, friends, comforters and most importantly moms.

My mom has always been there for me, making sure my path through life has been relatively smooth and backing me up. I couldn't ask for a better mother!

Exactly;
...I always remember her as being strong and loving throughout my childhood and now into my adulthood. She has always backed me up when things piled on me...

So thanks mom for all you do! Read more on my fantastic family in my book DMD LIFE ART & ME, buy the ebook or paperback version here; http://duchennemen.net16.net/buymybook.html


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.

Acknowledging

I've gone through my whole book in the last three months or so and I'd like to give some acknowledgments to people who have helped me out along the way!

First from my book, extract;
.....I’d like to thank all my family for being such good sports all through my writing adventure. Thanks to my Mother for all the care....

Obviously thanks first there to my mom! I could not write anything if my care wasn't so good! Thanks to Action Duchenne for all their help and selling copies of my book. Thanks for the memories life! And last but not least thank YOU to all who read and buy my ebook and paperback versions!

There's so much more to my book than a few extracts and pretty pictures, why not give it a whirl and jump in feet first exploring all things DMD! Also see who I personally thank in my book DMD LIFE ART & ME. Buy here in ebook or paperback form; http://duchennemen.net16.net/buymybook.html


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.

Artistic wanderings

One section of my book DMD LIFE ART & ME is exclusively devoted to showcasing my art work. I have included a small selection of paintings (available in colour in my ebook, depending on your device) and a small explanation of why they were made.

Extract ....I’ve explored many varied styles and don’t really like to pin myself to any particular genre of art as you will see.....

To see my new gallery just head to artwanted.com and type Ian Griffiths in the search box!

Read about my art and see what digital paintings I've included in my book DMD LIFE ART & ME, available to buy in ebook and paperback versions here; http://duchennemen.net16.net/buymybook.html


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.

Heart health led to food joy

Back in 2007, I had the biggest scare of my life when my heart started worrying me. I developed palpitations and couldn't breathe very well at all. I ended up in hospital put on heart controlling meds and needing to use my ventilator more in the day.

Extract;
...Then the palpitations got more frequent, not even the overnight use of my ventilator calmed me. In the mornings within minutes my hands would start pouring with sweat and I would sit in bed panting while my mother got me up...

Whilst in hospital I found out I weighed 6 stone 4 (88 pounds)! I had great difficulties eating. Thankfully I was given pureed food and this changed my diet to things I hadn't eaten in ages like vegetables and meat! We were all overjoyed by that. We were incredulous that I could eat again albeit mushed up.

Extract;
....I discovered some food I could eat on the second day I was admitted. I was discussing with a nurse about my eating difficulties and they suggested that I try the puree menu the hospital had. One funny memory I have was upon seeing a pureed corn beef hash. I enquired “this is a normal piece of meat, how am I supposed to eat it?” After my first mouthful I had realised how foolish I was as the meat thinned out and turned out to be liquidised......

It's amazing that so many bad moments in my life turned into Golden Opportunities. Thank God indeed!

Read more about these Golden Opportunities in my book DMD LIFE ART & ME, available in ebook and paperback versions here; http://duchennemen.net16.net/buymybook.html


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 unexpected things

I remember writing about receiving my first webcam in my book. After seeing everyone I knew getting cam's and seeing that youtube was just starting to expand exponentially I decided to get one!

My first video specifically dealing with DMD started off pretty low but has now over 50,000 views, modest by youtube standards but for DMD and myself that's amazing awareness. It has loads of comments and is getting out there, I could never have imagined that;

Extract;
...To date and for me the most unexpected comments I get are from medical students; I’ve talked to trainee physiotherapists, genetics students and nursing graduates amongst others. I never once thought I would attract the medical world because I wasn’t sure my knowledge was that good. I suppose I gave an account that both describes the condition like a textbook and crucially gives the visible human side of things...

Read more in my book DMD LIFE ART & ME, available in ebook and paperback versions here; http://duchennemen.net16.net/buymybook.html


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.

From the depths, hope!

At a time of one of the worst depression episodes in my life, a ray of sunshine came through my art program which I had been ignoring for months. The best way I found out of depression was finding something I could do and listening to music. The worst thing I found was the constant churning of extremely selfish irrational thoughts during my depression, so breaking that cycle brought back happiness!

Extract;
....I needed to do something else to cheer me up; to let the happiness back into my
life like a ray of sunshine. Remembering that I still had Corel Painter IX sitting on my laptop, I decided to fire it up and put all my feelings down in paint. The first images were just abstract sloshes of oil paint smeared on a white background. It was quite liberating...

There's more to hope than just keeping occupied and will power, there's a hidden dimension to it and the whole world will see that soon. Read about my relatively recent life in my book, DMD LIFE ART & ME, available in ebook and paperback versions here; http://duchennemen.net16.net/buymybook.html


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.