Helpful adaptions

FREE ebook offer still on!!!! 24 days to go. More information below!

Like I have previously mentioned resourcefulness is a vital skill when you live with DMD. This is especially true when you need to adapt to something. For instance when writing using a normal table I used to get tired so my parents found me an angled desk and that really helped me. Another example was when my neck became tired and made eating and breathing difficult, so my dad rigged up a headrest which I still use today!

Extract;
...My father made me a table; it was made of wood and had metal tube to secure it to the chair. It made writing in my chair much easier; although I was a slow writer anyway....

I'd like to thank my dad for making me a lot of these adaptions. Read more about these adaptive solutions in 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

Only 24 days left!!!!!

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.

Change

There are some changes that are very much welcome. For instance, starting a new art project, starting a new job, being old enough to understand and learning new skills.

With DMD change is like a double edged sword. I've experienced periods of positive change but I have also experienced a lot of negative changes. Losing the ability to walk, the ability to move my arms and one of my worst bug bears new equipment entering into my life.

I understood that this equipment was much needed but it's the kind of change I did not like. It's a constant reminder of loss and the relentless need to keep getting updated equipment really annoyed me especially in my younger years.

Extract;
...Just when I had gotten used to a piece of equipment I was measured up for a new item. There’s no choice with DMD you either had to change or be in pain from an undersized piece of equipment...

Find out more about my struggles and triumphs surrounding change in 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

Only 25 days left!!!!!




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.

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.