The end of my games console opens new doors

For a few years following 2001 I was pretty much stuck on my games console all day by 2004 I was struggling and eventually I had to give it away (I wrote sold in my book but I was in error).

Extract;....Increasingly I was finding it very difficult to play on my beloved [games console]. My hands could barely move, my fingers were very stiff and it would take me a long time just to press start....

Giving it up however has led to great things, just when all seems lost there's often a ray of sunshine behind a cloud. I got a voluntary job helping out on a online pool game, I became a self taught digital artist and am now an author too. Thank God indeed for these rays, I have been blessed so much!

So don't give up when you lose something because there might be hidden opportunity behind the corner. Just go with the flow and stay calm. Be happy :)

Read and buy my book DMD LIFE ART & ME here; http://duchennemen.net16.net/buymybook.html

Available in ebook and paperback!

(Ebook special offer!!!! For a limited time only my ebook has been reduced 45% to $1.65. Just enter this promotional code upon purchase; YZ38F Why not take this cool offer up to fill your Nook's, Kindles and digital editions with DMD knowledge!

Offer closes on April the 1st 2012.)


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.

Liquized lunch....

I know personally many lads with DMD who may have swallowing issues, some can manage soft food, some struggle but manage usual food, some can't eat at all (using feeding tubes instead), some need liquidized food like me and some are completely fine.

We all deteriorate differently, which dispels the myth that all with DMD are the same.
I can only speak for myself personally, so here's how my problems started one sunny day,
Extract; ...One sunny morning I tried eating some fruit whilst my father fed me, I began chewing but as soon as the small food bits where ready to be swallowed, I just couldn’t activate my swallowing mechanism...

The rescue out of my problems came from pureed food, it happened seemingly by chance when I went to hospital on an unrelated issue. I was offered the puree menu and haven't looked back since. If you think you might benefit from a puree diet then look up pureed food and recipes online.

To read through my culinary catastrophe's and triumphs buy my book DMD LIFE ART & ME; Available in ebook and paperback here; http://duchennemen.net16.net/buymybook.html

(Ebook special offer!!!! For a limited time only my ebook has been reduced 45% to $1.65. Just enter this promotional code upon purchase; YZ38F Why not take this cool offer up to fill your Nook's, Kindles and digital editions with DMD knowledge!

Offer closes on April the 1st 2012.)


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 always something we can do!

There's a temptation with DMD just to look at the negative and get thoroughly depressed, that's not say you shouldn't mention it to anyone. How else would they know what it's like? Here's an example of what I'd like to do but can not;

Extract;...not being able to help out around the house. For instance 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...

Far from leaving it there, I focus on the positive things I can do. That definitely goes for everyone in the entire world, the benefits of having a positive outlook are definitely plain to see.

Extract;
...To keep my sanity intact however I just concentrate on what I can do; internet
browsing and shopping for my parents is one of the tasks I can perform...

To see the positive side in my life please read and buy my book DMD LIFE ART & ME; Available in ebook and paperback here; http://duchennemen.net16.net/buymybook.html

(Ebook special offer!!!! For a limited time only my ebook has been reduced 45% to $1.65. Just enter this promotional code upon purchase; YZ38F Why not take this cool offer up to fill your Nook's, Kindles and digital editions with DMD knowledge!

Offer closes on April the 1st 2012.)


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.

Technological wonders

I know the internet and computers have their problems but they sure do have their positive sides! I couldn't interact with the world and meet other friends who have DMD without them.

The great thing about computers now is the amount of technology out there to help people with disabilities. There's eye movement technology to move the cursors, theres voice recognition, lightweight mice and other input devices. It's very liberating.

Extract;...However my fingers do not move much at all, only one thumb [pushing my finger down] has enough strength to push the light mouse buttons. With the pointer speed set to maximum I can just about manage to operate a computer...

Buy my book here; http://duchennemen.net16.net/buymybook.html

Extra- Check out 2 other books on amazon by two other Duchenne authors, Misty Vanderweele's "In your face Duchenne Muscular Dystrophy All pain All glory" and Ricky Tsang's "Ridiculous: The Mindful Nonsense of Ricky's brain". There's loads more too!


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 benefits of a non invasive ventilator

During the really hot summer we had in 2003 in the UK, it was so hot that everyone was just exhausted sitting down. I like the temperatures fairly warm anyway but that was something else. We Brits aren't used to extreme heat although who really is! If you have air conditioning it's manageable but that's not common here!

The only relief I got was on my non invasive ventilator at night, the cool air was delightful. I used to let a small amount leak out to cool me down (I wouldn't recommend doing that unless you're sure your breathing is up to it). It was great when the heat dropped in the Autumn.

Extract;
....It had another benefit too, if whilst on the ventilator I moved my chin a few millimetres a cool blast of air would hit my clammy body and provide some instant cooling relief....

See how I resourcefully conquered many more problems in my book DMD LIFE ART & ME, buy the ebook and paperback here; http://duchennemen.net16.net/buymybook.html

(Ebook special offer!!!! For a limited time only my ebook has been reduced 45% to $1.65. Just enter this promotional code upon purchase; YZ38F Why not take this cool offer up to fill your Nook's, Kindles and digital editions with DMD knowledge!

Offer closes on April the 1st 2012.)


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 cool are siblings!

I often talk of how helpful my parents are but I don't want to overlook my sisters, my eldest sister would make sure my youngest sister and I stopped arguing as kids and would drop everything for me. My youngest sister made me fleece covers and kneepads for my wheelchair and a few other things.

Extract; ... I was holding a small piece of wood which was light and straight, whilst my arm rested three inches in the air on a soft foam pad that [my youngest sister] had made...

DMD affects the whole family both directly and indirectly, being honest I never used to think that or understand it. Through writing this book and interacting with the DMD community, I know this is a whole family condition. That means thousands more are affected than the approximate 20,000 diagnosed worldwide every year.

Read how my whole family are affected in my book DMD LIFE ART & ME, buy the ebook and paperback here; http://duchennemen.net16.net/buymybook.html

(Ebook special offer!!!! For a limited time only my ebook has been reduced 45% to $1.65. Just enter this promotional code upon purchase; YZ38F Why not take this cool offer up to fill your Nook's, Kindles and digital editions with DMD knowledge!

Offer closes on April the 1st 2012.)


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.

Thoughts for the future...

Thoughts for the future....

After the horrifying couple of years I had from 2001 onwards, I ended up with no aims, no direction and no idea what I could do. I would just play on a games console eight hours a day, worrying about this and that and watching tv. Mind numbing boredom slowly crept in. I thought this couldn't possibly be it for me...

Extract; ...That brief period of uncertainty had made me wonder was there more to come for my life; looking up at the years ahead of me I just couldn’t see me sat in
front of a games machine...

If you can find an aim please do follow it through because the alternative is really no fun in the long run. Ironically losing the ability to play the games console changed my life. There's hope for everyone! Read how things changed in my book DMD LIFE ART & ME, buy the ebook and paperback here; http://duchennemen.net16.net/buymybook.html

(Ebook special offer!!!! For a limited time only my ebook has been reduced 45% to $1.65. Just enter this promotional code upon purchase; YZ38F Why not take this cool offer up to fill your Nook's, Kindles and digital editions with DMD knowledge!

Offer closes on April the 1st 2012.)


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.

Repayment?

I was once asked this;

Extract;...Quickly he segued on to the topic of ‘responsibility’, he went on to ask me “How are you going to repay your parents for all the hard work and sacrifices they have made for you?” At the time I pretty much ignored his comment with a “Yeah, I suppose I’ll find a way” I knew it was highly improbable that I’d get a job because I was and still am ill....

This at the time made me feel terribly guilty, and I thought purely in terms of monetary means. I do have work now, selling my books and paintings but it's only really supplementary income for now. DMD doesn't stop everyone affected by it from working but it depends on their abilities as we're all different. At the time I was recovering from a terrible few years.

Thinking now there's ways we all can thank our parents, we don't need to pay them off specifically. We can love our parents, surprise them with 'just because' gifts, honour them by doing as they say and not answering back and we can talk, joke and laugh with them. That's how we can repay them for all their love and sacrifices. Owe man no thing except to love your neighbour as yourself.

Read more of these helpful tips in my book and see how my dad calmed me after my irrational guilt in my book DMD LIFE ART & ME and buy the ebook and paperback here; http://duchennemen.net16.net/buymybook.html

(Ebook special offer!!!! For a limited time only my ebook has been reduced 45% to $1.65. Just enter this promotional code upon purchase; YZ38F Why not take this cool offer up to fill your Nook's, Kindles and digital editions with DMD knowledge!

Offer closes on April the 1st 2012.)


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.

Ebook offer!

Ebook special offer!!!! For a limited time only my ebook has been reduced 45% to $1.65. Just enter this promotional code upon purchase; YZ38F Why not take this cool offer up to fill your Nook's, Kindles and digital editions with DMD knowledge!

Offer closes on April the 1st 2012.

Extract of putting my mask on; ....While my mother and I talked she would prepare my mask ready for my nightly sleep on the Nippy Ventilator. Eventually after careful jostling my mask would be securely fastened onto my face and the air initiated, I would slowly drift into a deep sleep whilst clutching the switch in my right hand...

To buy the ebook and paperback of DMD LIFE ART & ME please visit 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.

Labour savers...

One of the greatest inventions I personally think is awesome is the ceiling hoist. It goes by many names but basically it involves a sling being wrapped around a body and then being attached to a machine that lifts a person up.

It's great because for me it's far more comfortable than being lifted by a person. Being lifted by hand hurts my tracheotomy tube and because my arms are weak I couldn't hold on. Not to mention the danger it places on my parents backs. I definitely think for those with DMD using the hoist is important for your safety as well as your caregivers. Although you must do what's best for you as we are unique individuals and not carbon copies.

Extract;
...it was time for me to be hoisted into my wheelchair. My mother hooks the grey sling surrounding my body onto the metal crossbar hanging from the hoist and I’m raised up into the air. My arms are carefully positioned on my legs so that my shoulders won’t hurt. Next I’m moved over my wheelchair by the touch of the button and carefully lowered in......

Read my book DMD LIFE ART & ME to find out more on those labour savers that help me out; 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.

Unforseen problems bring unexpected solutions....

We've all had unforseen problems, like a lightbulb breaking or a shelf that falls off the wall. Most people wouldn't get overly worried about it, they'd change the bulb or find a new shelf. Or they'd even rig up a temporary shelf or find a torch!

You need this kind of resourcefulness when faced with DMD. For me when I needed a nightly non invasive ventilator mask this meant I could no longer call out to my parents. My dad quickly found a solution;

Extract;
....Having my face enclosed in a mask presented an unforeseen problem, due to my voice being quite weak it was impossible for me to call my mother to help me out of bed. We solved this problem by purchasing a doorbell with a wireless button
press unit...

This ended up being a temporary measure so read my book DMD LIFE ART & ME to find out the long term solution which could help you too! Buy my book here; http://duchennemen.net16.net/buymybook.html

Never give up when faced with unforseen problems because you'll hopefully find unexpected solutions!


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 one moment to the next....

It's a strange thing being an adult with DMD, one moment I could be moments away from passing out then the next moment I'm reasonably fine laughing and chatting away. It shows how we all live on a knife edge, one moment away from death. We truly are living in a temporary state.

One particular day, I was having my tracheotomy tube changed when suddenly there was a problem and the change was aborted mid way through. The next hour was fraught as we rush to intensive care to have the tube properly fixed in! Everything was ok but it really was a cliffhanger that could have easily gone wrong. This is not something most people deal with on a daily basis.

Extract; ...Quickly and without a great deal of fuss he [the intensive care doctor] inserted a fresh plastic mini tracheotomy [tube] into the hole halfway up my throat. Finally and with a huge amount of relief my mother suctioned away the excess and potentially dangerous secretions rattling in my windpipe. The white mucus would literally ‘shoot’ up the suction tubing with a gurgling sound that only signalled to me pure relief. Moments later with a clear chest I was laughing and joking with my parents....

Read through things that most people (without DMD) would never even think about in my book DMD LIFE ART & ME and buy here; http://duchennemen.net16.net/buymybook.html

Challenge your mind.


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.

Uncharted territory...

After my stressful year in 2001, I had this new fangled mini tracheotomy in my throat and a chest that didn't feel as if it belonged to me.

I had great difficulties deciding when I needed suctioning and when to stop doing it. Sometimes a mere cough might lead to an eruption of mucus or it might be just a cough. Or when in the process of suctioning it's hard to know when to stop, there's no green light in my lungs to stay stop, so it involves intuition and a bit of guessing.

Extract;
...We were fine with the clean procedure of suctioning but crucially I was struggling to know when to halt the process. Every time I thought my chest was clear of fluid and told my mother to remove the catheter, ... but two or three minutes later I could hear and feel secretions again. This meant I had to redo suction much to my mothers’ annoyance. After many stressful days I was finally learning my body’s telltale signs and signals, when I said my chest was clear eight times out of ten it was....

Find out how I coped with further challenges in my book DMD Life art and me 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.

What it's all about...

My book DMD LIFE ART & ME is an autobiography, a textbook, a year by year guide and a small encyclopaedia of DMD knowledge! One of the first UK autobiographies from a person living with Duchenne Muscular Dystrophy. It's not a vain puffing up of myself but an open, candid, honest and insightful personal story of a life lived through adversity.

50% of my proceeds go to Action Duchenne, a DMD charity looking to help out! It has been out over a year and available on Amazon, Action Duchenne's webshop, as an ebook and in a local shop!

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 ..... she gave me along the way. I’d like to give special thanks to my dear friend ... whose support and early encouragement helped me write this book. Thank you for reading every chapter as I wrote them. Thanks to my current doctors for helping me stay alive so far. All thanks to my God for giving me the gifts and knowledge to write this book and the ability to enjoy the process. Lastly thanks go to you the reader...

To buy my book please find all the links 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.

New beginnings...

After I had my permanent mini tracheotomy put it in, it was time to re-evaluate my life. I had left school and decided to retake one of my A/S levels, getting a D in business studies. After that I was at a loss.

I was far too unwell to get a full time job and I have trouble with too much stress affecting my health. I was consigned to playing computer games and thinking 'there must be more for me!' I felt hopeless. I had just illness seemingly ahead but who knew I'd be an author and digital artist.

Extract;
...This was the beginning of yet another change in my life it was now going to be full of ventilators and suction machines and the worry of possibly getting ill...

Read how my life turned 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.

Tube delays....

Recently I talked about my really bad health experiences during 2001, which ended in November when I headed home with a permanent mini tracheotomy in my throat.

But what is a mini tracheotomy? Well it's a small hole in my throat occupied by a plastic tube that is used to clear my throat of mucus. It's not the type that you can breathe through as perhaps most people would think. To clear mucus, little catheters are threaded through the tube and the mucus is then suctioned away using a suction machine.

This is part of the tube insertion sequence as found in my book;

...The silvered wire is fed down the hole in my throat and the introducer with the mini tracheotomy attached is brought to the free end of the wire. Next the hollow introducer is covered in a water soluble lubricant and slid along the wire into my throat. It felt as if my whole windpipe was blocked but before I could think about that the introducer along with the silvered wire was quickly removed leaving the mini tracheotomy behind in my throat. Finally a tracheotomy tube holder is placed around my neck and fastened into place on the blue “butterfly” wings...

Read more on this and other life preserving interventions I've endured over the years, in my five star rated (rated by bookbag.co.uk) book DMD Life art & me here; http://duchennemen.net16.net/buymybook.html

Ebook here; smashwords.com




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.

Momentous times....

After weeks of recovery I thought I was over the worst, but my bad year continued, I was heading back to hospital in South Wales in danger once again as my throat was clogged up and I couldn't breathe.

I ended up in a hospital bed slumped over pleading to go back on the NIPPY ventilator I left behind only a few weeks prior. I wasn't messing about with my health and knew I needed help to breathe and sure enough within a day I was back in intensive care.

Extract;
..."I need the Nippy ... ugh ... I’m so tired dad ... I just need the Nippy!" I whispered out in tears to my father. I kept repeating my request to use the Nippy ventilator. Eventually after seeing me struggle to breathe and as the physiotherapists machines failed, the nurses had no option but to send me up to intensive care....

I only had another few months ahead before that horrible year ended and then I began a life of apparently no direction, find out what happened to me during that time in my book DMD Life art & me and buy here; http://duchennemen.net16.net/buymybook.html

Ebook available 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.