Then it hits...

When I was 16/17 years old, the colds around me eventually penetrated my defences and I cought one. It quickly deteriorated even with some basic treatment and antibiotics I still kept getting worse and was becoming delirious.

As we didn't have a clue what was going on, I continued like that for 4 days. Getting worse and worse. Eventually we had to go to the hospital. The pain in my lungs was terrible, but what was to come I would never have thought would hit me!

Extract;
...My father woke up at about eight he took one look at my ill and increasingly frail body and decided that I should seek medical aid at the hospital. He had seen me quickly deteriorate over the past four days and became significantly concerned at my continuing distress...

Find out exactly what happened in my book DMD Life art & me; 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.

When under pressure...

A very serious time for me was coming up to 2001. Unbeknownst to me my cough ability and breathing ability had crossed a vital threshold and I was in extreme danger.

A lack of monitoring had not prepared my family to the truth and we had no idea we needed vital pieces of equipment. If your child has DMD or you live with it yourself make sure you stay well informed because the medical world can be highly naive in this area.

Extract;
....It seemed everywhere I went and in most classrooms many people would be coughing sometimes unintentionally towards me. I never knew how much danger I was in, remember that I was unknowingly losing my cough ability and my breathing muscles were getting increasingly worse. All this was adding pressure to my immune
system as well as the year twelve worries and pressures. Inevitably my defences were weakening around me and the point of no return had been passed......

Read the inevitable consequences that happened to me in my book DMD Life art & me; 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.

There's some things......

There's an awful lot people with DMD can do, and it's always a great idea to come up with resourceful ways around barriers. There are places however where those barriers become impossible while we have DMD. I remember one funny moment in a Geography in sixth form (after high school), the course was more and more 'outdoors' in nature.

One particular day we had to go to a picturesque part of Wales to do a survey of the area. The hilarious part was to go approximately neck high in a river. This was impossible at the time, my wheelchair isn't the submarine it could be! So this basically ended my Geography course as a lot of the work entailed strenuous outdoor activities.

Extract;
...Geography was increasingly focusing on activities ‘out in the field’. This literally meant expeditions to rivers and mountainsides. One memorable occasion on a trip to the beautifully green Gower peninsula, we were asked to go neck high in a river to take measurements. This was impossible for me and my wheelchair, it definitely wasn’t a submarine! As most of the course was increasingly getting physical again I had to drop yet another subject...

But my mother always says,"when one door closes another window opens". See what windows opened up for me in my book DMD Life art & me; 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.

Car cramming...

My last vacations back in 2000 and 2001 were getting really difficult. The places we went didn't have beds that were great so we took mine. Thankfully having a van helped accommodate this, we also took my mobile (moveable) hoist and luggage and me and my parents. To say it was tight was an understatement! Six hours in that position was a little uncomfortable but we got there.

Vacations never felt like a rest because I took DMD with me, and using less comfortable devices and strange surroundings just made things a little harder. It was more work for my parents. We made the best of it though and had happy memories but we've never been on vacation since. I know there are more accessible places to go but I find home more comfortable for now.


Extract;
....Our luggage would fit in the extensive boot area and my dismantled mobile hoist ready for transport would be resting on my rear wheels. If we had a smaller vehicle holidaying would have been very difficult if not impossible. I would stay in this position for around six hours while my father swiftly drove us....

Read about my vacations and see the good times in my book DMD, Life ary me; 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.

Funny fascination.. Not quite an oscar..

Many oscars have been given out recently, but everyone has their own memories like golden rewards shining in their mind.

One such memory makes me smile, when I was younger I used to have a carer take me out every week and we would go to the cinema or shopping. One cinema visit was hilarious and nerve wracking at the same time! It just goes to show how fickle memory is;

Extract;
....Once we arrived and presented our tickets, the cashier asked my age for the film. I said “I’m fifteen” confidently but [the carer] had forgotten this. He said “Oh no I’m sure he’s fourteen, you are fourteen aren’t you?” I’m quite embarrassed by this and tell the cashier that I was definitely fifteen. After a few tense glances the cashier reluctantly lets us through... We both laughed at his unsure memory. I’ll never forget the look on the cashiers face, it was priceless!

Read more of my funny moments in my book DMD Life art & me and buy 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.

Stressing sickness....

Stress is no good for anyone, having the right attitude and keeping calm definitely combats this. However having that correct attitude is really hard to keep hold of!

In school, examinations and constant academic pressure always added to my stress and it led to a lack of sleep and irrational worries. I'll admit I'm no good under stress, but again the attitude is what it's always about.

Extract;
...Around May or June time we had two weeks of examinations. I was a nervous
wreck every morning before any exams. I didn’t hold up well under pressure, I would worry about doing badly and letting my teachers or parents down. I would often get a rumbling churning sick feeling in the pit of my stomach... If the pressure got really relentless I often picked up colds or infections. Those really didn’t help me....

Read how I coped through far more than exam stress in my book DMD Life art & me; 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.

Writing woes...

In secondary (high) school about 14 years ago (that long!) I needed help to write. In the first and second years I could write pretty well on my own and keep up but quickly I just couldn't write what was needed.

Thankfully this was exactly why I needed a one to one aide, she took over writing and would also write as I dictated during exams. The only downside was doing my exams in a small cupboard type room!

Nowadays there's far more in the way of technology, like dictation software and on screen keyboards etc. So there are more options. Now children and adults with DMD (with a few exceptions) can easily interact with the world. The internet may have a bad name in some circles but it has opened up communications to so many disabilities not just DMD.

Extract;
...Increasingly Mrs Watkins had to write for me as a scribe. I would dictate my answers and she’d write things down word for word. Any long words I would have to spell out as it was my work. If I made any errors they would be mine....

Read more on communication in my book DMD Life art & me, and buy a real life 'textbook' here; http://duchennemen.net16.net/buymybook.html

I really appreciate all your purchases, 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.