Sleeping when you have DMD

Available in EBOOK and PAPERBACK versions!

Sleeping presents many problems, with comfort and pain locked in a balancing act. A must have if possible is an adjustable bed. This helps me control my position to avoid the back pain I often get. Another reason why I need an adjustable bed is to help me breathe by keeping my chest secretions in the right place.

Extract;
...I’m always concerned the mucus will come back while I sleep on my ventilator so I try to keep my bed as upright as possible to avoid this...

The position I end up in isn't great for sleeping. It's just another part of the Duchenne's balancing act.

Read more about the often hidden struggles I've been through and all the positive solutions my family and I have found. Keep positive!

Available as a PAPERBACK 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

Get you very reasonably priced EBOOK 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.

Power pressure

Available in EBOOK and PAPERBACK versions!

This morning whilst in bed on my ventilator sleeping peacefully the power went off. I find myself locked in behind a facemask heating up with the breaths I have to take myself. I contort my face to make a gap to let some cool ambient air in. My ventilator is screaming out an alarm powered by a tiny battery, my electric bed went off and my air mattress is wailing it's alarm. Quickly the problem was found and power was restored! I resume my assisted breathing a little weary of sleeping.

I have some backup batteries, a battery powered ventilator, a battery powered suction machine, a battery operated hoist and most importantly faith. It is vital to have some backup plans for this eventuality!

Extract;
...for the dependant people like me we need our wheelchairs and ventilators charged and reliable power for suction machines, hoists, beds, mattresses and food blenders....

Read more about those things you'd never think were Duchenne's related in my book DMD LIFE ART & ME!

Get you very reasonably priced EBOOK here; https://www.smashwords.com/books/view/69702

Available as a PAPERBACK 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


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 joining the dots

Available in EBOOK and PAPERBACK versions!

When I was around twelve to fourteen I started researching DMD on the internet. I looked at terms like heart complications and breathing problems. I went through the list thinking I've got that and that but not this, this and this. I presumed in my naivéty that 'Oh I'd never get those symptoms'. I just couldn't equate that to me!

Extract;
...To me I thought I would go on and on staying the same; not equating what I had learnt about my DMD to me possibly getting worse...

As I got older the reality quickly set in and all the list had said I developed. Follow me on my travels through Duchenne's in my book DMD LIFE ART & ME!

Available as a PAPERBACK 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

Get you very reasonably priced EBOOK 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.

The importance of the right kit

Available in EBOOK and PAPERBACK versions!

Having the right equipment is absolutely vital for those with DMD. If those with Duchenne's have the wrong wheelchair pain will be a major problem. For the younger ones with DMD writing on a normal table can place a strain on their bodies, so a writing wedge or a specially constructed table is really helpful.

Here's my experience of poor equipment, extract;
...One time I have fallen out of a sling because it was poorly designed, and crumpled up under my body pressure. It flung me to the floor from a few feet in the air; [thankfully] I did no major damage. The whole event shook me up a bit and that sling was quickly thrown out!...

You can see more examples of the right and wrong equipment in my book DMD LIFE ART & ME!

Get you very reasonably priced EBOOK here; https://www.smashwords.com/books/view/69702

Available as a PAPERBACK 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


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.

True Care...

Mothers are the unsung heroines of DMD and for those without a mother there's always that caregiver that goes the extra mile! These amazing heroines/heroes get a disturbed night to help turn us so we can get to sleep. They are ever vigilant and on guard looking out for us and brightening our days. Even gratitude seems very pale compared to them. Thank God for them and their skills!

After an operation as a child my mom was fantastic,

Extract;
...I had to be turned frequently every night, which meant my mother missed out on her much needed sleep....

Read more about the exemplary care I had and still have from the unsung heroine in my life in my book DMD LIFE ART & ME!

Buy the fantastic EBOOK version here; https://www.smashwords.com/books/view/69702

Also 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.

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.