DMD logistics

DMD is a bit like a battlefront in many ways and just like a front line needs good supply lines so does a life with Duchenne's. A case in point would be my suction catheters. I've run really low on them lately after numerous attempts to have some ordered they seemed never to be ordered. Thankfully I finally found out they have now been ordered. It got me thinking about all the supplies that one needs when living with DMD. In the beginning there's relatively few supplies needed just electric wheelchairs and the like. Now as an older man with DMD there are many supplies needed such as catheters, tracheotomy neck tapes, tracheotomy tubes, ventilator tubes and connectors, wheelchair supplies and medications! There are probably more but as you can see it's vital the supply lines stay open because without them life would be impossible.

Extract;

...Under the third shelf lie the rest of my large medical supplies such as boxes of suction catheters and a box of Tena pads used to cover my bed and wheelchair. Only recently do I store my mobile hoist by the window,
it creates a better space in our living room (where it used to reside)...

Read more about these vital supply lines 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

Early morning wake up call

Available in EBOOK and PAPERBACK versions

There I was sleeping soundly when all of a sudden my ventilator pipe fell out. That is very worrying as I'm breathing for myself getting hotter and hotter in my face mask. Trying not to panic is the absolute key in that situation. Thankfully a few minutes later mum plugged everything back in and the relief was amazing! You certainly learn many character lessons with DMD, learning patience and self control amongst other things.

Extract;
... the ventilator pipe fell out. Suddenly and unexpectedly I had to breathe for my self, quickly my heart started thumping and I could feel that burning sensation in my lungs again...

The above situation was in hospital back in 2001, so I avoid burning sensations in my lungs now because I'm so much better than then. So it puts that into perspective, for a few minutes I could just about manage :) You've just got to stay positive! Read 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

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

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


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.

Great Inventions

Available in EBOOK and PAPERBACK versions

There have been some fantastic inventions in the world of Duchenne that have prolonged life by many years and offered many improvements to the quality of life. Ventilators have really come along from the days of the iron lung. The choices are amazing now. Non invasive ventilators using discreet nasal masks that use the natural way of breathing instead of tracheotomy tubes (although they help quite a few) have been very important in lengthening life. Something that isn't medical but has made my life easier has been voice recognition software. I wrote my new book using that. There are so many more inventions out there, the options are endless!

Extract;
...I came across an even better art program. It ... featured a very strange drawing of a hand with many fingers on the box. It was most definitely eye catching and I
became even more excited......

An art program available on the computer was so very liberating and definitely a great invention for me! You can read about the great inventions in my life 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-books/

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


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.

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.

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.

Where there's a will theres a way

Available in EBOOK and PAPERBACK versions!

For the last few days my ventilator power cable hasn't been fitting in snuggly so as a temporary fix I suggested to my mother to tape it in place and it worked! This morning the problem was fixed by a respiratory nurse thankfully! You really do need to think very quickly when something DMD related comes up.

My dad made me a wheelchair table when I was having difficulties, somehow tables weren't commonplace then. What a great Dad I have!

Extract;
...My father made me a table; it was made of wood and had metal tube to secure it to the chair. It made writing in my chair much easier; although I was a slow writer anyway...

Read more about the workarounds we figured out in my life 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.

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.

Adjusting to the new

Don't forget my FREE ebook offer is still on!!!!! 10 days to go!!!!!!!!

My terrible year was behind me in 2002 but I had a lot to get used too. I had this strange mini tracheotomy and a ventilator to use. The ventilator was pretty easy to get to grips with but the tracheotomy was a whole different ball game. Not that the hole caused me problems, it was finding out whether I needed to clear my chest or not.

Extract;
...Every time I thought my chest was clear of fluid and told my mother to remove the catheter, “Right, I’m done Mam” I would say but two or three minutes later I could hear and feel secretions again. This meant I had to redo suction...

Eventually I got it more or less under control and really felt better but it was certainly a trial getting it right.

Read how I adjusted to all the new things in my life in my book DMD LIFE ART & ME!

Please visit here to buy my paperback version; http://duchennemen.net16.net/Buy-my-book-s/

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

Only 10 days left!!!!!


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.