Waistcoat dilemmas..

I have never seen my mother laugh so much when I was mentioning the idea of trying to get into a waistcoat for an upcoming family wedding. I was saying how it wouldn't be great to end up in A & E, clutching a broken arm on the day of said wedding! I knew that my arms would have tremendous trouble being bent back trying to fit into the waistcoat and I joked that I may break an arm!

Who said contractures don't make you laugh!

Extract;
...DMD can cause “Contractures”. Where ankle, knee, hip and arm joints have shorter muscles connected to them causing bent and deformed limbs; because of the associated Duchenne’s muscle cell death. That makes it impossible to completely straighten your arms or legs without causing huge damage and pain...

Thankfully I don't have to wear a waistcoat, so I will not need to grace the A & E department with a visit! (God willing).

Read about the lighter side of life with Duchenne's in my book DMD LIFE ART & ME!

You can buy your paperback copy of my book on Amazon here; http://www.amazon.co.uk/DMD-LIFE-ART-AND-ME/dp/1907652337/ref=sr_1_1?ie=UTF8&s=books&qid=1288105302&sr=8-1

Also available as an E-book 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.

Equipment takes on a new dimension...

For most of us 'equipment' could mean that new camera you always wanted or a new car to get to work. Equipment takes on a very different meaning for those with DMD. For me it means basic equipment just to function normally. Without hoists, a wheelchair, ventilators, food blenders and a special bed I couldn't even get to my computer. I'm extremely grateful and glad these things have been invented!

Extract;
...I had to have additional equipment added to my house, so I could be transferred from a wheelchair to my bed; also to get on the toilet and in my bathtub. I had two ceiling hoists installed...

It's so vital to have these helpful pieces of equipment to make life that bit easier. Read about all those helpful devices in my book DMD LIFE ART & ME!

You can buy my fantastic EBOOK version here; https://www.smashwords.com/books/view/69702

Available through my website 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.

It's how you look at it...

When I first needed a lift fitted in my house we were grateful for the local councils help but they soon complicated things! To them just getting a lift in was their only priority. They didn't care where it went in my house suggesting our living room! It would have blocked the window and completely obstructed our lives.

Extract;
...There was a huge fuss made by the council, originally they wanted us to have the lift installed in our living room! That would have been highly inappropriate and would have blocked the light entering through our front window. It would be difficult welcoming people into your main living area with a hulking steel box in the way...

My family had to pay for a extension to the house and that housed the new lift. It is all a question of how you look at it!

Read more about a different perspective in my book DMD LIFE ART & ME!

Available at Amazon right here; http://www.amazon.co.uk/DMD-LIFE-ART-AND-ME/dp/1907652337/ref=sr_1_1?ie=UTF8&s=books&qid=1288105302&sr=8-1

You can get your reasonably priced EBOOK version for $3.00 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.

ONLY 5 hours left!

FREE EBOOK offer still on!!!!!! Just over 5 HOURS left!!!!

Living with DMD

There's a temptation to call people who have DMD, 'DMD boys' or 'DMD girls'. I feel that is all backwards because you give the condition pre-emenence over the person. Surely we are a boy/girl/man/woman with DMD. It's good to see the person before the disease.

Sometimes even I slip up and say DMD person but I try very hard not too, because living with a stereotype hanging over you can belittle you.
DMD kid can instantly bring connotations of average life expectancies, not walking by a certain age and so on. Duchenne's doesn't effect every person living with it exactly the same, there can be big differences in all the DMD variables.

Extract; ...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....

Read about the person first 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 28th 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 a little over 5 hours left!!!!!

JUST 3 days left.

FREE EBOOK offer coming to an end soon!!! JUST 3 days now!!!!

I won't be back till there's just one day left in this ebook offer! So you really haven't got long left until this offer ends. I've had a great response with over 50 downloads so far, you can certainly increase that and it's totally FREE. Let your friends know, if they have never heard of DMD they can find out for FREE. There's no better time than now!

Extract;
...When I was about 18 months old my mother noticed I wasn’t moving around like I should have been, my sisters could run rings around me. I was often bumping into things and holding on to furniture whilst walking. My mother was obviously concerned, so she contacted the health visitor and our family doctor...

Read more about the genetics of the disease and how I've coped with Duchenne's 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 28th 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 3 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.

One thing leads to another

FREE EBOOK offer closing soon, in just 4 days!!!! Download for FREE while you can!!

It's strange how thinking about one thing can lead somewhere totally different. I was thinking whether I would be father one day but quite bizarrely I started searching through software on a popular shopping site. That led me to find an art program and from then on I became an artist!

Extract;
...As my father was sitting nearby I quickly showed him the new art creating
software and we bought it there and then....

After six years I'm still learning new styles and techniques. I currently have 97 pieces of art and have sold a few pieces too!

You can see some of my favourite works of art in both the paperback and ebook versions of 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 4 days left!!!!!

You can visit my art gallery here; http://www.artwanted.com/artist.cfm?ArtID=66134&IRV=36


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.

A book worth writing!

Amazing FREE EBOOK offer still on!!!! Just 5 days left!!

I never thought I'd even write a book let alone an autobiography. Who ever heard of an autobiography coming from a twenty something? I know some very public figures may have at that age, but I'm just a hidden recluse of very small standing!

It is quite astounding that it only took ten months to write over ninety two thousand words! Quite a daunting task for a complete writing novice. I scraped though with the odd grammatical faux pas but overwhelmingly the response has been positive. It's been spread around a bit too, with stories of my book being passed around colleagues, families and being read multiple times. So for awareness alone that really makes it a book worth writing.

Extract;
...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....

Read through DMD LIFE ART & ME a very worthwhile book!


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/

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 5 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.

Remembering

FREE EBOOK offer still on!!! Just 6 days to go now!!!

My friend Carl mentioned he was remembering those with DMD who have died. I thought I would also remember some of my friends who's lives were cut short by this cruel disease. I would just like to take this chance to mention John, Stuart and Sam, I miss these guys and I still find it strange that they aren't here.

My book is dedicated to Sam Morgan, he was a great positive man even though he was really struggling with this condition.

Extract;
...This book is dedicated to my dear friend ... Sam Morgan. He was sadly and cruelly taken in ... 2010 by the deadly claw of this muscle disease. Your kind, loving
and brave soul will be fondly remembered ever more....

So this one is to remember not just my friends but all those who sadly died. All our thoughts go out to the family members who remain. I believe one day we'll all be seeing each other again one way or another. Keep on hoping for the best!

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 28th 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 6 days left!!!!!

No Guarantees...

FREE e-book offer still on!!!!!!! Just 7 days to go now!!!!! We are in the last week!

Last night I was in bed thinking about eating. That can be a frustrating experience indeed! I was thinking about eating a lovely juicy red apple and imagining what it tasted like! Then I realised I just simply could not eat that. I have my work cut out coping with this but faith most certainly get's me through.

Extract;
...I was discussing with a nurse about my eating difficulties and they suggested that I try the puree menu the hospital had.....

Like it says above I am fortunate enough to eat pureéd food which means that I can experience the tastes of at least a few things. I know people with Duchenne's who are totally tube fed and I can only imagine how they feel.

It is not all doom and gloom though as I also know a lot of people with Duchenne's who can still eat the conventional way! It just goes to show that they are no guarantees even in DMD. So it is definitely worth staying positive as there is always someone worse off than you.

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 7 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.

FREE ebook offer extended by two days!

FREE EBOOK offer EXTENDED by 2 days so it's still 8 days to go!!!!!

Thanks to everyone who has been downloading my book I very much appreciate it!!! Spreading awareness of this devastating disease is one of my aims for this book because it is so generally unheard of.

Extract; ...In case you’re wondering what causes Duchenne Muscular dystrophy, I will explain it in terms of how it affects me. There is a protein called Dystrophin located in
everyone’s DNA, that is missing or damaged in an affected male, it affects mainly males [occasionally females] because it’s an X linked recessive error; males only have one X chromosome. This causes the muscle fibre membranes (Dystrophin acts as a shock absorber) to get over-stressed and die off...

Read why this lack of dystrophin is important in my book DMD LIFE ART & ME!

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 8 days left!!!!!

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.

Not just boys

8 days left in my fantastic FREE ebook offer!!!!! Not long left now!

When I was growing up I only ever thought males got DMD but thanks to Facebook and far more information I now know that females can also develop it. The genetics are complicated enough but the XX of a female's genetics in some cases go haywire and they end up having the same DMD males get. That's truly tragic but the males and females with DMD are far from tragic!

Extract; ...Duchenne Muscular Dystrophy is a rare (approx. 1 in 3500 births in the UK) severe terminal muscle wasting genetic disease that gradually kills all the body’s muscle cells...

My book deals with the male perspective and you can see the challenges I endured 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 8 days left!!!!!

The right equipment is vital

Free EBOOK offer still on!!!!! 9 days to go, Final stretch!!!!!!!!!

Right equipment is vital.

In the years following my stay in hospital I had developed a very painful sore area on the bridge of my nose. It was agony putting my mask on every night. You see the mask was poorly fitting and this caused many a tearful night!

Extract;
...The skin on the bridge of my nose had broken down badly due to the poorly fitting mask I was given, it often bled quite a lot. Luckily a few years later I received a much better mask which cured that problem and the bridge of my nose recovered as best as it could but unfortunately I still have a scar there...

Once I received that new mask it was sheer relief. I sleep so much better now! However if you wear a mask a lot there's always something dented, my forehead takes the brunt but it certainly doesn't bleed and hurt like my nose did. It is so important to get the right equipment, there are some horror stories out there of people waiting years for things.

Read about my battles for equipment 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 9 days left!!!!!

Adjusting to the new

Don't forget my FREE ebook offer is still on!!!!! 10 days to go!!!!!!!!

My terrible year was behind me in 2002 but I had a lot to get used too. I had this strange mini tracheotomy and a ventilator to use. The ventilator was pretty easy to get to grips with but the tracheotomy was a whole different ball game. Not that the hole caused me problems, it was finding out whether I needed to clear my chest or not.

Extract;
...Every time I thought my chest was clear of fluid and told my mother to remove the catheter, “Right, I’m done Mam” I would say but two or three minutes later I could hear and feel secretions again. This meant I had to redo suction...

Eventually I got it more or less under control and really felt better but it was certainly a trial getting it right.

Read how I adjusted to all the new things in my life 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 10 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.

Balancing the risks

FANTASTIC FREE EBOOK offer still on!!!! 11 days to go!!!!

By my third visit to ICU in 2001 I was thoroughly fed up of the seemingly endless procession of hospital visits I endured. I was offered the solution of a permanent mini tracheotomy which I accepted after some thought. I was concerned by the risks of further infection but the build up of secretions in my chest was a bigger problem. On balance it was the best option to take at the time.

Extract;
..However he thought the benefits of clearing my airways certainly outweighed the risks posed by infection as long as we used the correct clean procedure..

It turned out really well for me! I've been to the hospital a lot less and it certainly gave me my life back. Before, the risk of a return trip to ICU weighed very heavily over my head. I'm very grateful to still be here!

Read through my tough year and look at the way everything turned out 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 11 days left!!!!!

Humour in unexpected places

Don't forget my FANTASTIC FREE e-book offer is still on!!!! 12 days LEFT!!!!

During my second stay in ICU I was in severe danger yet again. I had to be rushed to the hospital one cool autumn evening gasping for breath and feeling distressed. I eventually had to go back onto a ventilator and have yet another mini tracheotomy inserted. I quickly recovered because I had made the right decision to get checked out at the hospital at just the right time.

As my recovery progressed my sense of humour certainly returned! Also I showed that I do indeed have expensive tastes!

Extract;
...One comical incident happened when he described a drug called Domperidone but I thought he said Don Perignon the Champagne! He [the doctor] was in fits of laughter and liked my expensive tastes, we all laughed at that...

It just goes to show that even in the midst of extreme trials there's always something to smile about.

Read more of my champagne moments 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 12 days left!!!!!

University or not?

AWESOME FREE ebook offer still on!!!!!!! 15 days left!!!!!!

During the hardest year in my life in which I nearly died in ICU, there were decisions to be made in school. We had to fill out UCAS forms to choose which university to go to. For some reason I never felt I was going to go to one. I was proved right as I had two more ICU visits coming up, scary stuff indeed, staying alive was more important than a degree.

I ended up with a very weakened chest, a mini tracheotomy and a ventilator all in the space of year. I was shellshocked and totally confused by life and ended up playing computer games for 4 years. It wasn't because I chose to be deliberately lazy either.

Extract;
...I knew and came to realise after my near death experience that my DMD had the potential to get much worse and much nastier. School would be fast approaching and most of my peers and friends had to choose their potential universities...

My life may have ended like this, 'he gave up and then faded into obscurity and died',

BUT NO!

I found a voluntary job online, then I was led to digital art, then I wrote a book and am writing another. All without a degree, university is not the only way to find employment, learning on the job is a great way to progress or you could work for yourself. There's always options!

Read through my extraordinary life 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 15 days left!!!!!

Not just another statistic

FREE ebook still available for your reading pleasure!!!! 16 days left!!!! Time is ticking!

My parents were given a twelve year life expectancy for me at my diagnosis. There are many horrible stories out there about other families told the average life expectancy in a most insensitive way.

Averages can't account for differences in care and things like poverty and no medical facilities. No one should see them as a hard and fast deadline but as a guide. No one really knows their dying day and any one regardless of illness could die in the next second. That's why it's really good to live each day at a time and not take tomorrow as a given. Think positively because who knows a person with DMD may live to be the oldest ever!

Extract;
...With expert care from my family and some careful monitoring I had survived the averages so far....

Read more about the day I broke the average I was given 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 16 days left!!!!!

Just what do you mean paralysis?

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Just what do you mean paralyzed?

I'm always uneasy when saying 'I'm kinda paralyzed'. Paralysis has connotations of someone completely unable to move, having no sensation below a certain point. Well that's not true for DMD. I've coined a term of Duchenne's induced paralysis (not sure if I'm the first to do that), which I characterize as someone who has sensation and very limited movement, like just a few fingers etc.

It's unfortunate using that term but paralysis is so very close to the condition some older adults with DMD find themselves in. Just remember we can feel and may have some movement too!

Extract;
... I definitely needed a one-to-one carer as I was in a wheelchair full time and gradually becoming paralysed because of my DMD...

Every time I mention paralysis just think Duchenne's induced paralysis! Read all about my gradual declining movement 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 the 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 17 days left!!!!!

The DMD balancing act

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Last night I had tremendous difficulties trying to move my wheelchair. I have a very light control which is very easy to move but I simply couldn't operate it at all. My arm was tired because I'd been typing with my mouse. Only when my arm was moved could I just barely move and get to bed.

Those moments are very worrying as you feel out of control. Thankfully because I have voice recognition I can do my work on these tired days. Perhaps I should have used it but sometimes quietly typing helps me express myself better. The DMD balancing act goes on!

I remember in school how I used to be able to eat a snack at break time but then it took too long. DMD certainly is relentless

Extract;
...A short recess was always taken at quarter past ten that lasted 15 minutes; I used to eat a small snack that was until it took me longer than a quarter of hour to eat it!...

Read more about the constant DMD balancing act 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 18 days left!!!!!

School days.

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Everyone needs an education, especially so for those with DMD. The majority of those living with DMD have perfectly capable minds. Such a mind needs teaching and molding!

I think for most children getting up in morning on a school day is a major chore! It is usually a bit more of a hassle for those with DMD! Just getting dressed might take some thought, then waiting for accessible transport, even just trying to find a safe place to unload can be fraught and then getting around school requires resourcefulness. After all that I still quite enjoyed school and learning, I was not to fond of homework though ha ha!

Extract;
...My usual school day routine was to be up at quarter past seven in the morning, eat breakfast usually golden brown toast with jam or [chocolate spread] and then I’d be whisked upstairs so my mother could dress me...

That was only a taster, read more about my high school starts 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 19 days left!!!!!

Not thinking about DMD

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I may have DMD but some of the best times I've had have been when the condition doesn't even enter my mind. Dwelling on it will lead to negativity and my life couldn't move on like that.

Once I'm comfortable and busy then I don't think about it. I remember just enjoying watching rental movies with my family way back in the 1990's. No DVD then just good ol' VHS! Doing what most families do really helps keep those with DMD stay grounded.

Extract;
...My mother would occasionally rent out a VHS from the local rental shop, so we could watch films we missed...

Read more of these normal everyday things 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 22 days left!!!!!

Vacation memories

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Vacation memories.

I don't mention every vacation I've been on in my book or it would be about 1000 pages long! I do mention a few of the places I've been too. Around the same time as we got drenched in Lancaster, my family and I went to Lake Ambleside in the Lake District in NorthWest England.

After some huge persuading I reluctantly rolled my wheelchair on to a boat. I really don't like being on anything that floats at the best of times! However I really enjoyed it once we were underway looking at the beautiful scenery that reminded me of home.

Extract;
...I took my chair (reluctantly) on a canal barge and on a boat cruising up Lake Ambleside in Lancashire...

Read about more my vacation adventures in my book DMD LIFE ART & ME! (For you e-book readers turn to page 32)



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 23 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.