The funny thing about suction

That age-old saying that no two days are the same certainly does apply to suctioning out my chest. Yesterday I spent an hour struggling to get about 2 inches of secretions in the suction tube. It felt as if I was trying to suck out tar or very thick treacle! On other days I may get copious amounts of very thin secretions and that is just as bad as the thick stuff. These secretions are really important for keeping out all kinds of bugs and infections. Their potentially deadly if your muscles don't work properly which I found out in 2001 when a simple cold turned into pneumonia. It is so easy to get ill like that but there are a number of things I'm doing to ward off those colds. I try to keep those people who are ill away from the house. Next I'm trying to eat healthier and for example adding garlic to my diet and talking vitamins and minerals. Lastly I keep vigilant and take action on the immediate sign of any illness.

Find out more about 2001 in my book DMD LIFE ART & ME!

EBOOK available here; https://www.smashwords.com/books/view/69702

Available on Amazon USA here; http://www.amazon.com/DMD-Life-Art-Ian-Griffiths/dp/1907652337/ref=sr_1_1?ie=UTF8&s=books&qid=1288120811&sr=8-1

Available on Amazon UK 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

My new Ebook Poetic Diversions available to buy here; https://www.smashwords.com/books/view/206857

All links available in my website here; http://duchennemen.net16.net/Buy-my-books/

My art can be viewed here; www.artwanted.com/thebigG2005


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 tribute

We've lost a few brave people with DMD over the last week. It is heartbreaking when anyone with DMD dies but some weeks it's extra hard when more than one go.

Here's a tribute from my book;

This is a tribute to all my fallen comrades
They were not slain by weapons
Nor war wounds but still heroes to the end
Taken by the dark claw of this deadly muscle disease
They were strong to the fore
Strength to their core while all around muscles receded
They were workers, businessmen, artists and friends
An inner power of towering energy known no bounds
Great public orators letting all know their struggle to be equal
To be equal in standards of care, equal in love
Equal in society in a world not geared for them
From innocent childhood to paralysing adulthood
Misery not their style, happiness and warmth their comforter
No pity for them please
Just remember them
The brave forgotten few
Our brothers, our sons, our fathers, our friends.
Taken before their time

(Girls can be affected, this was just for the guys at the time)

There are more comforting words and great hope in my book DMD LIFE ART & ME.
This isn't all about selling books I mean every word, we're in this together.

EBOOK available here; https://www.smashwords.com/books/view/69702

Available on Amazon USA here; http://www.amazon.com/DMD-Life-Art-Ian-Griffiths/dp/1907652337/ref=sr_1_1?ie=UTF8&s=books&qid=1288120811&sr=8-1

Available on Amazon UK 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


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.

DUCHENNE AWARENESS DAY today!

DUCHENNE AWARENESS DAY today!

I've had DMD for just shy of 28 years as you know my book covers the first 25 years. So what exactly is DMD?

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. Firstly it attacks the skeletal muscles, especially the legs, hips, arms and spine. It quickly moves on to abdominal muscles, meaning boys [and rarely girls] are usually in a wheelchair between the ages of seven to ten. Finally it attacks the heart and respiratory muscles. Eventually leading to an early death [more than likely] due to cardiac or respiratory arrest...

It's a devastating disease that has robbed many parents of their children. I have lost friends to this awful condition. What gets me through is faith, not any faith but the faith that comes from a higher power. I believe a better future IS coming sooner than anyone could imagine. In the meantime any help you can provide to those with DMD is really appreciated. 50% of my amazon proceeds goes to Action Duchenne a DMD charity. My book is available at Action Duchenne's webshop where 100% of the proceeds goes to them. Thank you!

Action Duchenne webshop; http://www.actionduchenne.org/result/AD_ShopProduct/24455.jsp?n=55

Available on Amazon USA here; http://www.amazon.com/DMD-Life-Art-Ian-Griffiths/dp/1907652337/ref=sr_1_1?ie=UTF8&s=books&qid=1288120811&sr=8-1

Available on Amazon UK 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


Foreword

I’m Ian Griffiths from South Wales. This book is a story of my life so far up to the age of twenty five years. I live with and suffer from the ill effects of DMD which stands for Duchenne Muscular Dystrophy. It is a severe muscle wasting disease and a life limiting terminal illness. It won’t kill you in six months in the traditional sense of ‘terminal’, but it’s far crueller than that, it steals every muscle in your body first and then kills you, anywhere up to the age of thirty. There have been cases of men living past that into their forties and fifties but only with drastic interventions such as ventilators and tracheotomies, more on this can be found by reading on.
I hope to cover a few things in this book, from a history of my childhood years to a more detailed history from sixteen years onwards and finally onto my current problems and triumphs. At times things I write may make you smile or may make you pause and think about the seriousness of life with this devastating disease. I really hope there will be a cure but currently for us supposedly ‘older’ guys with DMD (over twenty one), there seems very little hope. If I don’t see a cure in my lifetime, I hope my campaigning helps in some way bring it about for future generations, so another child won’t have to see their body wither and die before their time.

Sometimes quick, sometimes gradually

The muscle deterioration in DMD can oftentimes be slow but sometimes it's amazingly quick. Although I absolutely despised stretches (on my legs), they really are necessary to keep discomfort and pain at bay in the younger years.

During my vacation of a lifetime over in Florida, I did not do any of my stretches and consequently paid the price later on when I returned home. You really get to see how quickly DMD can deteriorate when you don't do what you need to do. Many people in the know will tell you that you should never stop stretches as a treat.

I noticed that only after two weeks it was excruciating to go in my standing frame.
Extract;
...The pain was immense after the holiday because we didn’t really do my stretches often enough (it was a vacation after all). It was absolute torture standing again in my ‘clickers’. My knees were burning; it felt like my ankles were braking. I would plead with my mother to get out of the frame but I had no choice as it was part of my physio regime...

Well I really wish I took the advice that is being given now! However currently (age 27), I don't have physio any more, partly because it would hurt and partly because I have no physiotherapist. Post 18 care leaves much to be desired in Wales!

Don't forget my free e-book offer!!!!! For one month only until the 26th of May my e-book version of DMD LIFE ART & ME is free, you can get your FREE version here; https://www.smashwords.com/books/view/69702

If you still prefer the look and feel of a real book then please visit here to buy my paperback version; http://duchennemen.net16.net/Buy-my-book-s/


Foreword

I’m Ian Griffiths from South Wales. This book is a story of my life so far up to the age of twenty five years. I live with and suffer from the ill effects of DMD which stands for Duchenne Muscular Dystrophy. It is a severe muscle wasting disease and a life limiting terminal illness. It won’t kill you in six months in the traditional sense of ‘terminal’, but it’s far crueller than that, it steals every muscle in your body first and then kills you, anywhere up to the age of thirty. There have been cases of men living past that into their forties and fifties but only with drastic interventions such as ventilators and tracheotomies, more on this can be found by reading on.
I hope to cover a few things in this book, from a history of my childhood years to a more detailed history from sixteen years onwards and finally onto my current problems and triumphs. At times things I write may make you smile or may make you pause and think about the seriousness of life with this devastating disease. I really hope there will be a cure but currently for us supposedly ‘older’ guys with DMD (over twenty one), there seems very little hope. If I don’t see a cure in my lifetime, I hope my campaigning helps in some way bring it about for future generations, so another child won’t have to see their body wither and die before their time.