Things DMD can't take...

Even though Duchenne's takes so much away from those who suffer with it, there are things it can't take! Even after being made a full time wheelchair user I still had my curiosity, going up the street to find something very interesting. Enthusiasm it can't quash, loads of those with DMD are go getters, earning, working, writing books and in some cases starting families! You would think being empathic might be difficult but we often care for others and want to see them do well! Imagination is definitely not destroyed by DMD, I have ideas always popping up especially for my art and writing! There's many more I could write about but that's why we smile when we do!

Extract;
..I had to get an electric wheelchair, which was provided by a charity. The one fitted for me was excellent; it even had a bright red comfortable cushion. I didn’t take long to adjust to it. I loved going outside in it, feeling the speed push me over the pavement and up hills. It was only five miles per hour but to me it felt like fifty! I often
drove up the hill outside my house to go and see a large fish pond a neighbour had. The Koi carp would glisten in the glorious sunshine we occasionally had, it was mesmerising for an eight year old...

Read through more happy memories in my autobiography DMD Life art & me and buy here; http://duchennemen.net16.net/buymybook.html and here



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 only times of freedom...

Dreaming in my sleep seems the only time when I'm truly free as well as using my imagination. Although you'd think I'd dream about walking or running through forests, I don't always do that, sometimes I dream of me as I was when I was slightly stronger. I remember one such dream, I was playing a football game on my playstation and I remember thinking when I wake up I'll play it. I was getting all excited and then I woke up, remembering that my playstation was gone and all my games too and that I couldn't hold the controller anyway. That was a come down I can tell you! Thinking positively really helps!

Extract;
...A time when I could truly escape, dreaming of winning sports contests and climbing
mountains, but sadly I had to wake up weak again. That is a measure of the truly heartbreaking nature of Duchenne’s muscular dystrophy. I always try to fixate on the things I can do and that makes it a tiny bit easier to get through the depressing times...

See how I cope through the rough times in my life when depression lurked nearby and how I survive and thrive through the rest of my life in my book, DMD Life art & me. Please buy here; http://duchennemen.net16.net/buymybook.html and here


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.

Regulating heat...

A big problem for me is getting cold, I know many others with DMD have the same problem. Circulation is often affected and because we are sedentary it can often exacerbate the situation. There is an experimental treatment (definitely not a cure) that appears in some cases to improve circulation but for those not using that we need to rely on blankets, heating (radiators etc.) and other heat producing items. It can be a real pain as some can't drive their wheelchairs, hold pens and computer mice or in some cases can even develop sicknesses as it may impact our already weakened immune systems. I need my heating way up high and the rest of my family are boiling while I'm just mildly warm!

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 more about my exploits with heat regulation all through my life in my book, DMD Life art & me. To buy please visit here; http://duchennemen.net16.net/buymybook.html and USA here and UK here!


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.

Sunday swimming smiles...

Recently my mom was showing me some photographs of me holding up some swimming badges and that links well with today's topic. Every sunday for many years until about sixteen I used to go swimming with my dad at a local disabled swimming club called Starfish. You could earn badges if you could do certain things whilst swimming. There were 4 badges to earn, Red, Green, Yellow and Blue. Blue was absolutely solid to get and only very few earned that. I got Red and Green but I always used to rue the fact that I couldn't even try to earn the next two, DMD had taken too much strength away. We had fun but it was freezing while changing after the dip! I'd recommend swimming very much while it's possible.

Extract; ...In my later swimming years my father would drag me around the pool with his feet under my arms so I could join in with the lengths. It was a happy time that all the family joined in with, including my mother who would watch us through a large window sitting in a small cafeteria...

To read more of what I got up to despite DMD, then buy my book here; http://duchennemen.net16.net/buymybook.html also buy on UK amazon here and USA here!

Life with DMD is all about the things you can do not what you can't.


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.

Update on sales...

Hi all my readers and followers I'd like to give you a few stats for the last few weeks,

Approximate USA Amazon sales; 3

UK Amazon sales; 0

Ebook sample downloads; 3

Ebook sales:0

Blog interest 209 views (Thank you!!!!)

Email responses to books, 1 absolutely fantastic email :).

Total books sold since Oct 2010, confirmed 120, approximately 60+ more. Near 200 :)

I know things are looking bleak and that times are really tough, hopefully next week I'll have better results.

For those who have bought my book, really my sincerest thank you. Pass on the message.

For those who are interested in buying my book, If bought through Action Duchenne 100% of the proceeds goes to them (limited stock) Roughly £200 given so far. If bought through Amazon then 50% of my proceeds go to Action Duchenne as well. Over £90 given so far. So not only do you help me you those who are affected. For futher information on Action Duchenne go here,

To buy visit DuchenneMen here or UK Amazon here or USA Amazon here!

Also I will not ever pressurize you into buying, if you genuinely are interested in reading about my life with DMD please do buy but if you just like following my blog and learning all things DMD please keep reading!

I'll post more statistics in the coming weeks to keep you informed.

Thank you,

With Love,

Ian




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 occasional pain of DMD...

Generally for those with DMD pain can be a real set back. Not all get into pain, but I know a few people including myself who suffer moderate to severe pain. Twice last night in fact my back was in agony, a sharp nerve pain burning white hot. It's almost tear inducing as I wait for my air bed to inflate on its regular cycle and then the pain disappeared. I tried a strong painkiller but I hated the permanent head fog it left me in all day, so I go elsewhere with pain relief using faith and sometimes lesser medication. Mostly there's a certain level of discomfort in the background but I have gotten used it. The first memories of pain I have revolve around stretches that are needed earlier on to help us stay on our feet or stay flexible;

Extract; ... Often the doctor’s and physiotherapists would stretch my legs, feet and arms. I can only ever remember the pain, it would make me cry out and hot tears would run down my
cheeks. I understood that I needed to endure this because my legs were very weak, but I still hated it .... My legs were really tight and sensitive to pressure so my mother was told to stretch me everyday. I had to endure this pain everyday, some days I would just get so fed up and angry of Duchenne’s that I would argue and bargain just not to do them.....


Find out how I coped with pain and many more challenges 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.

When muscles start to fade...

Depending on the country and level of DMD provision those with the condition might visit a muscle clinic some time within their lives. In my case I only visited one between the ages of 2 to 10, it was a confusing place, with adults talking about me and seemingly planning out my life. I just wanted to play and go home as soon as I could. They generally monitored my breathing and checked how well I could move. If you (someone affected by DMD) can get this service it's well worth it, as monitoring is vital in preventing emergency admissions. Sadly because the monitoring in general stopped for me I indeed ended up needing an emergency admission fighting for my life in intensive care. So I know how vital this is.

Extract;
...Every six months I was going to the muscle clinic to get progress updates, they would check how far I could walk before getting tired. My lung
capacity was checked with a peak flow meter, you basically blow into a device that has an arrow moved by the air you expel...

Find out more about my life experiences with medical care and with other forms of care in my book DMD Life art & me and buy here; http://duchennemen.net16.net/buymybook.html and here and here!



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.