Uncharted territory...

After my stressful year in 2001, I had this new fangled mini tracheotomy in my throat and a chest that didn't feel as if it belonged to me.

I had great difficulties deciding when I needed suctioning and when to stop doing it. Sometimes a mere cough might lead to an eruption of mucus or it might be just a cough. Or when in the process of suctioning it's hard to know when to stop, there's no green light in my lungs to stay stop, so it involves intuition and a bit of guessing.

Extract;
...We were fine with the clean procedure of suctioning but crucially I was struggling to know when to halt the process. Every time I thought my chest was clear of fluid and told my mother to remove the catheter, ... but two or three minutes later I could hear and feel secretions again. This meant I had to redo suction much to my mothers’ annoyance. After many stressful days I was finally learning my body’s telltale signs and signals, when I said my chest was clear eight times out of ten it was....

Find out how I coped with further challenges in my book DMD Life art and me here;http://duchennemen.net16.net/buymybook.html



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.

What it's all about...

My book DMD LIFE ART & ME is an autobiography, a textbook, a year by year guide and a small encyclopaedia of DMD knowledge! One of the first UK autobiographies from a person living with Duchenne Muscular Dystrophy. It's not a vain puffing up of myself but an open, candid, honest and insightful personal story of a life lived through adversity.

50% of my proceeds go to Action Duchenne, a DMD charity looking to help out! It has been out over a year and available on Amazon, Action Duchenne's webshop, as an ebook and in a local shop!

Extract; ...I’d like to thank all my family for being such good sports all through my writing adventure. Thanks to my Mother for all the care ..... she gave me along the way. I’d like to give special thanks to my dear friend ... whose support and early encouragement helped me write this book. Thank you for reading every chapter as I wrote them. Thanks to my current doctors for helping me stay alive so far. All thanks to my God for giving me the gifts and knowledge to write this book and the ability to enjoy the process. Lastly thanks go to you the reader...

To buy my book please find all the links here; http://duchennemen.net16.net/buymybook.html




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.

New beginnings...

After I had my permanent mini tracheotomy put it in, it was time to re-evaluate my life. I had left school and decided to retake one of my A/S levels, getting a D in business studies. After that I was at a loss.

I was far too unwell to get a full time job and I have trouble with too much stress affecting my health. I was consigned to playing computer games and thinking 'there must be more for me!' I felt hopeless. I had just illness seemingly ahead but who knew I'd be an author and digital artist.

Extract;
...This was the beginning of yet another change in my life it was now going to be full of ventilators and suction machines and the worry of possibly getting ill...

Read how my life turned in my book DMD Life art & me; http://duchennemen.net16.net/buymybook.html



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.

Tube delays....

Recently I talked about my really bad health experiences during 2001, which ended in November when I headed home with a permanent mini tracheotomy in my throat.

But what is a mini tracheotomy? Well it's a small hole in my throat occupied by a plastic tube that is used to clear my throat of mucus. It's not the type that you can breathe through as perhaps most people would think. To clear mucus, little catheters are threaded through the tube and the mucus is then suctioned away using a suction machine.

This is part of the tube insertion sequence as found in my book;

...The silvered wire is fed down the hole in my throat and the introducer with the mini tracheotomy attached is brought to the free end of the wire. Next the hollow introducer is covered in a water soluble lubricant and slid along the wire into my throat. It felt as if my whole windpipe was blocked but before I could think about that the introducer along with the silvered wire was quickly removed leaving the mini tracheotomy behind in my throat. Finally a tracheotomy tube holder is placed around my neck and fastened into place on the blue “butterfly” wings...

Read more on this and other life preserving interventions I've endured over the years, in my five star rated (rated by bookbag.co.uk) book DMD Life art & me here; http://duchennemen.net16.net/buymybook.html

Ebook here; smashwords.com




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.

Momentous times....

After weeks of recovery I thought I was over the worst, but my bad year continued, I was heading back to hospital in South Wales in danger once again as my throat was clogged up and I couldn't breathe.

I ended up in a hospital bed slumped over pleading to go back on the NIPPY ventilator I left behind only a few weeks prior. I wasn't messing about with my health and knew I needed help to breathe and sure enough within a day I was back in intensive care.

Extract;
..."I need the Nippy ... ugh ... I’m so tired dad ... I just need the Nippy!" I whispered out in tears to my father. I kept repeating my request to use the Nippy ventilator. Eventually after seeing me struggle to breathe and as the physiotherapists machines failed, the nurses had no option but to send me up to intensive care....

I only had another few months ahead before that horrible year ended and then I began a life of apparently no direction, find out what happened to me during that time in my book DMD Life art & me and buy here; http://duchennemen.net16.net/buymybook.html

Ebook available here;



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.

Fresh perspective....

After the moment I thought I had died, I woke up bleary eyed and in a blur in a strange room. As I came round more I realised I was stuck behind a facemask having cooling air pushed into my lungs. I was so immensely grateful to be alive, I thought I was gone minutes earlier.

Extract; A few minutes after the ventilator was switched on I regained consciousness. I saw through bleary and short sighted eyes what looked like [the doctor]. I was overcome with emotion as the deep cooling breaths pumped in their delightful life sustaining air. I keep repeating myself over and over between breaths to [the doctor], "Thank you for saving ... my life!... Thank you for saving ... my life! "

My life had changed and I was looking at a new perspective, I had a long year ahead of me trying to recover. My lungs have never been the same and further problems lay ahead. You learn not to mess around with DMD. My naivety ended there, death is closer than we think. The one thing I never lost and was even galvanized was my positivity.

Follow through the pages the sometimes fraught and often positive life I've had post 16 in my book DMD Life art & me! Please buy here; http://duchennemen.net16.net/buymybook.html
Ebook available here; Smashwords.com


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.

Was this it....

In 2001 my life took a huge turn for the worse. My weak cough and the lack of monitoring finally caught up with me. The cold I had turned into pneumonia in the space of four days.

An attempt to clear my chest failed and actually accelerated an emergency life or death set of events. I thought my clock had run out and the time had stopped. It appeared that my life had ended.

Extract;
...I felt a huge plug of mucus move in my trachea I tried to cough it out but it got firmly stuck. I tried desperately to breathe my lungs burst into pain as they ached for some life giving air. I tried harder and harder to breathe and the pain intensified beyond anything I knew. My heart pounded so loudly in my ears. I was drowning in a pool of my own fluid secretions. I knew something bad was going happen. Suddenly my eyes rolled back and everything went black at the same time my body slumped dangerously back. Was this the end of me...

By an Almighty power, it wasn't my end yet! I pulled through. Read what happened next! In my book DMD life art and me; http://duchennemen.net16.net/buymybook.html

Ebook available here; Smashwords.com



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.