Sacrifices you make

This isn't primarily about me but there are definitely sacrifices you make living with DMD. You must gradually put up with a certain loss of dignity living with DMD that's certainly true. Initially it starts with being dressed by someone else then relying on others just to use the bathroom and then help from others to do anything and even to stay alive. It's great to learn how to work with others but for the whole of your life it can be relentless but positivity and a certain can do attitude will get you through it! Many have sacrificed ever having relationships because of their current situations be it stuck in an institution, living at home or constantly messing relationships up (my problem) or even just never getting the opportunity. Totally understandably this can be devastating to those living with DMD it's very hard and I have been there myself. DMD gets in the way a lot when dating and that can make it that bit harder anyway. Too often dwelling on these shortcomings and the lack of relationships can lead to depression and on top of everything this can push people over the edge. There's a way to cope however and that is dwelling on a goal, we each need to find a goal that works for us or maybe a better one may be shown to you.

Read my ups and downs regarding the above topics 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 

Things you really miss

I remember in my friends film "A life worth living" there was a part that I can relate too this week. I was in a position where I really needed to comfort someone and the one thing they needed was a hug but I just simply couldn't. It makes you feel utterly inadequate, all I could do was say "Are you alright?" and that just seems silly now. Back to that film, my friend met a couple whose son was recently diagnosed with DMD and he was in the same position as myself unable to hug them. This is something that isn't mentioned in an ordinary DMD textbook with its list of cold facts. When you live through this disease it hurts mentally as well as physically.

The one thing I can't do is to get down in the dumps about it. It is incredibly hard to do this but often looking at the things you can do helps. On many occasions I've made digital art gifts to give to friends and that certainly does help because I love giving. Whatever way you do it stay positive!

Read more in my living textbook 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   

Warm and Positive

Available in EBOOK and PAPERBACK versions

DMD LIFE ART & ME! available on amazon and as an e-book. Remember that half my proceeds go directly to a Duchenne charity. Buying this book will help more than just me! It's not all treatment seeking though, there are some fantastic education programs tailored for children with DMD, and empowering activities for those older individuals! So why not help out and feel good learning more about 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...

This would be a great gift to pass on to those who know nothing of DMD. I explore most every part of Duchenne and most of all it's warm and filled with positive thinking. Find out more in my book DMD LIFE ART & ME!

BUY HERE;

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.

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.