Always great to have feedback

Over the last few weeks two ladies have contacted me saying how much they appreciated my book DMD Life art & me. One has a child with DMD and the other had a friend with it. You never know where your book is going and exactly who will read it. I've heard of my book being read by more than just the purchaser which I never really expected. I was glad that anyone read it at all I mean who would buy something about little me I thought originally. Although naturally I had a tiny hope I'd be a bestseller but that is only ever a dream, realistically I'm glad it's spreading some DMD awareness around. The more that gets recognized the better it'll be for those families affected by it. You can't do anything without teaching people. I know my book isn't perfect but the story and the awareness transcend the small typing errors.

If you would like to know more please use these links;


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 

You set the price! OFFER ENDED

Hi everyone, I have a promotion. You can buy my ebook (pictured above) for ANY price YOU choose on smashwords.com. Poetic Diversions was written last year and is my second ebook! Now you don't need to be a poetry aficionado to enjoy my ebook nor do you need a complex understanding of poetic concepts. All you need is an open mind and some quiet time to read. All you must do is sign up for a FREE smashwords account then buy this ebook for ANY price you choose. Either free, $2.99 or whatever you feel my work deserves absolutely no obligation to buy. Enjoy!

FIND MY EBOOK HERE;

https://www.smashwords.com/books/view/206857


UPDATE - This offer has ended, in fact a few weeks ago but apologies for being tardy in correcting this. :)

  

Not getting insular

 

When you live and struggle to get everything sorted out with DMD it can consume your entire day and life forcing other things to the side. I've often noticed that our disease is pitted against cancer or other diseases and have been guilty myself of griping against all the money and research lavished on cancer. It's definitely not fair to do this because you risk losing empathy for your fellow man as other diseases really are just as awful and devastating as Duchenne's. There are other things that are also important such as the world news for instance did you know the ring of fire is waking up increasing volcano and earthquake activity and terrible weather is getting more and more common. This may seem inconsequential but if these events happen to a family with a child/adult who has DMD it could be life threatening. If you can prepare for power failures and emergencies that would be a great idea.
I've emphasized those outside areas enough now but there's one area within the life of DMD is important and that is parents getting too focussed on their young child's immediate condition. While I think it's imperative to take things one day at a time it helps to think about accessible housing before wheelchairs enter the picture. Definitely encourage education and think about transition care because after 16 things start to get much harder as proper healthcare in the UK at least can be patchy at best. We never knew anything of transition care when I was a child as I was given a 13 year life expectancy and now I'm 28 this planning definitely might have helped.

Discover what happened when I was given this life expectancy 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

To cough assist or not cough assist

It's increasingly common to see cough assist machines suggested for use with people who have DMD. For some it's an an absolutely fantastic invention but for others it might not be the ideal solution. The machines themselves work by forcing a large amount of air into the lungs and then quickly sucking it back out in an attempt to dislodge any secretions through the mouth. I've had a mini tracheotomy for 11 years and when I first had it put in there was no cough assist devices anywhere to be seen. I am very comfortable and used to suctioning through my mini tracheotomy and it gets my secretions straight out. A couple of years ago I was given the opportunity to try a cough assist machine out to see if it helped. I had a terrible week with a great  deal of pain in my chest from using the machine twice a day with no noticeable movement of secretions when I needed them removed. Suction through my mini tracheotomy was by far better for me so I decided it wasn't right for me and sent it back to benefit someone who could find relief in cough assist machinery. My lung team at the hospital often bring up its usage to me even though they know I'm not going to use it. It helps to point things out to healthcare specialists because you need to set clear boundaries. Don't let my experience put you off, I have this advice if you're just starting to have coughing troubles (i.e. you've lost the ability to cough) then definitely do try it out first. If like me you're a long term suction user through a tracheotomy then do try it but don't get your hopes up too high.

Read about my tracheotomy installation 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

Eating with one arm behind your back

Pureed food has been a really important addition to my diet as it's the only thing I can eat now. Without which I probably would be chowing down on liquid supplements or worse! I'm really absolutely grateful it was shown to me a few years ago and it has helped me stay alive. The only downside is the lack of textures in any meal you have it's like eating with one arm behind your back. It's good food but I'm not sure many people realize how important texture is when eating a meal without it food just lacks that bit extra. For instance eating a sweet potato wedge lightly fried and seasoned is very different from plain liquidized sweet potato puree. The reason I don't add salt is because I've been advised to have a low salt diet for my heart. There's very little you can do about a lack of texture it takes a lot of they joy of the food away. I always try to remind myself that food is energy however there are things you can do like adding garlic or spices and being creative with mixtures of food but you can't really replace textures.

Read more about my puree adventures in my book DMD Life Art & Me! Don't forget you can buy this in ebook form see my links below;


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

The daily uncertainty

With DMD you never know what another day will bring. I know in life everybody has this same dilemma but most people wouldn't think that tomorrow they couldn't do something they did yesterday like writing with a pen. I have no idea if I can move my computer mouse the next day or whether a new pain would come along. (Coincidentally it's been many years since I held a pen!) Every month or so when I least expect it my fingernails get that bit too long. To most that would be no problem but my blog post describing my fingernail cutting exploits certainly shows how difficult it can be for me! Increasingly it's getting harder to use my mouse when my nails are only a tiny bit longer, it's amazing how difficult it becomes just to click the button. I never really know what could next fail and that's where being positive and hopeful comes into its own. DMD can certainly make you think and that's something it will never take away from me, the power of thought.

Read more about my daily uncertainties in my autobiography 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

Communication is even more vital

Communication is even more vital for those with DMD especially staying in touch. Every month I need my mini tracheotomy changed which is because the manufacturers recommend it and at the end of that time my chest usually suffers a little. Organizing this change usually takes place via email or the phone and it usually goes fine without any problems. However this didn't occur during my most recent tracheotomy change, I emailed them as per normal but after days there was no reply. So I had a very rude awakening yesterday as I was told my tracheotomy was being changed in 30mins this was at eleven a.m. late for many but with my sleeping hours that was really early! I was tired and my mother had to quickly rush me out of bed and get me ready and we just made it. Phew! I wasn't expecting a day of coughing and a tracheotomy change that day. It's nothing major but a simple reply would have saved my mother a rush and I could have got prepared. Surprises and Duchenne's don't often mix!

Read more about tracheotomy changes and communications 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