Too many alarms

Available in EBOOK and PAPERBACK versions

The worst time for a power cut has to be 4 AM. I had my mask on and everything going black with no air on is certainly worrying. Eventually I had my mask removed and power was restored quickly phew! If the power goes off everything alarms, my air mattress, my special telephone and my ventilator all whine away. Once power returned everything went quiet but there was one alarm still wailing.

Extract;
...Suddenly and unexpectedly I had to breathe for my self, quickly my heart started thumping [thankfully] the Nippy wailed out its alarm and I was quickly
reunited with the cool pressurized air that I was .... accustomed too....

Back to this mysterious wailing! We couldn't figure it out, convinced it was the bed we tried all we could to stop it. Eventually we tried switching off my ventilator, and blissful silence, you see we thought it was already off! That was really funny even at 4:30AM!

These alarms aren't mentioned in the DMD handbook if such a thing existed but you can read about those often unmentioned challenges 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

All links available in 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.

Ventilator trials

Available in EBOOK and PAPERBACK versions

Last night the temporary ventilator I was using whilst mine is serviced just wasn't working right, not delivering me the correct amount of air. I thought I was suffocating so I had to use my daytime ventilator. All this happening at 3 AM. Trying to alter the settings took an age but mum & I figured it out in the end. Nevermind a touch screen phone, a touch screen ventilator is the way to go!

Extract;
...I have quickly gone from roughly ten hours at night and three hours in the day to [twenty] hours per day on my ventilator....

I always remember to be thankful for these ventilators as they've been helping keep me alive for the last 11 years. Read more about my ventilators 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

All links available in 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.

When adaptive technology fails

Available in EBOOK and PAPERBACK versions

Last night my adjustable bed would not work, so I spent the night in the exact same position, thankfully I slept with no problems. Although it is very annoying when you cannot move to get comfortable in bed. It is a good thing that I had a working air mattress or I might have begun to develop a pressure sore! When your adaptive technology works properly, you can be lulled into a false sense of security, thinking you can take on anything. That is the same for every human being but with DMD these things can quickly become life-threatening, especially if you're ventilators stop working etc!

Extract from 2006;
.....My personal problems all seemed to be leveling out around me but as I know only too well life tends to throw a spanner in the works. That spanner in this case was my old grey lift. It had been my loyal servant for a shade over a decade, but time and wear had started to take its toll...

It is all about your attitude in these times that will get you through and in my case a strong a reliance on faith. If you have a positive outlook and hope then you can overcome quite a lot. Hopefully you can see within my book how that positivity comes through especially when times get tough.

Find out more 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


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.

Incommunicado

Available in EBOOK and PAPERBACK versions

Last night whilst on my ventilator my tracheotomy tube opened and air was escaping from my throat. I buzzed a pager I have and my dad came in, I had enormous trouble telling him what happened because with an open tracheotomy I am barely able to speak. My mum then came in and again the same problem, eventually after shouting neck (it didn't come out as a shout) my mum heard and corrected my tracheotomy tube.

It's rarely mentioned in textbooks that communication issues may arise. I've been having talking problems lately as my tongue weakens, it's one of those unexpected DMD 'surprise's'.

Extract;
....Having my face enclosed in a mask presented an unforeseen problem, due to my voice being quite weak it was impossible for me to call my mother to help me out of bed. We solved this problem by purchasing a doorbell with a wireless button press unit. Unfortunately this was only a temporary measure as my hands became weaker and weaker meaning I could no longer press the chunky doorbell button. I now have an environmental control....

Find out more about the unexpected surprises rarely mentioned in textbooks 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


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.