The many faces of suction

It's been awhile since my last blog entry but here goes. Personally I need my chest/lungs suctioned out everyday as and when needed. 12 years ago as a result of the ravages of DMD I lost the ability to adequately cough away any mucus from out of my lungs. Consequently I had a mini tracheotomy fitted to allow suction catheters to be introduced into my trachea to remove any excess mucus. If this were not done I would surely choke and well you know the rest.
That doesn't mean there's no humour involved as there have been a few funny experiences. Like when Mom gets all prepared with sterile glove only to find no catheter attached to the suction machine! Another aspect is that no 2 people suction me out in the same way which takes some getting used too. Mom is the best at doing it with very fast swift movements to clear my chest out, my Dad uses slower movements and goes further down the trachea. Going back to humour one my elder sisters always makes me laugh by calling my secretions "phlegmbouyant" and describing a horse race as she does it!

Find out more about suction and secretions in my book DMD Life and art!


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 

To cough assist or not cough assist

It's increasingly common to see cough assist machines suggested for use with people who have DMD. For some it's an an absolutely fantastic invention but for others it might not be the ideal solution. The machines themselves work by forcing a large amount of air into the lungs and then quickly sucking it back out in an attempt to dislodge any secretions through the mouth. I've had a mini tracheotomy for 11 years and when I first had it put in there was no cough assist devices anywhere to be seen. I am very comfortable and used to suctioning through my mini tracheotomy and it gets my secretions straight out. A couple of years ago I was given the opportunity to try a cough assist machine out to see if it helped. I had a terrible week with a great  deal of pain in my chest from using the machine twice a day with no noticeable movement of secretions when I needed them removed. Suction through my mini tracheotomy was by far better for me so I decided it wasn't right for me and sent it back to benefit someone who could find relief in cough assist machinery. My lung team at the hospital often bring up its usage to me even though they know I'm not going to use it. It helps to point things out to healthcare specialists because you need to set clear boundaries. Don't let my experience put you off, I have this advice if you're just starting to have coughing troubles (i.e. you've lost the ability to cough) then definitely do try it out first. If like me you're a long term suction user through a tracheotomy then do try it but don't get your hopes up too high.

Read about my tracheotomy installation 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

Why I do it...

All being well this Sunday I will be featured in a local Newspaper article. It has information on DMD, it has an interview with me and information on my book You can look out for it in the Wales on Sunday paper or go to the media Wales website to see it. I hope it helps in one thing that I am quite interested in that being awareness. That was one of the core aims for my book, because not many 25-year-olds (as I was at the time) write autobiographies. Hopefully people reading my book, especially those who do not know about Duchenne's will ask themselves why so young? After all I am no a celebrity and neither do I want to be one. I am hoping that they would see how much of a totally devastating disease DMD is and can see why time was so pressing.

Extract;
.... I’m such a positive person that giving up and dying never entered my mind at all. The next thing I did was to write on a pad of paper my mother held under my arm. In an emotionally charged moment and through many tears I scrawled in black ink “I’m too Young to Die”.....

Read all about the above story 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

Duchenne or Duchenne's

Available in EBOOK and PAPERBACK versions

A nurse told me once to say Duchenne's instead of Duchenne, at first it felt strange to be told how to say my own disease but she had a point. Saying Duchenne Muscular Dystrophy is fine but many of us including me reduce it to Duchenne. Some people say 'Let's eradicate Duchenne' or words to that extent. In France there are many families with the surname Duchenne. They may feel a little perturbed at being eradicated. It's probably better to say Duchenne's because then it better describes the disease and not a person. That disease truly will be eradicated!!!!!

A side note, Duchenne's is pronounced Do-shen's :)

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....

Read more about Duchenne's and what that diagnosis really means 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/


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 just boys

8 days left in my fantastic FREE ebook offer!!!!! Not long left now!

When I was growing up I only ever thought males got DMD but thanks to Facebook and far more information I now know that females can also develop it. The genetics are complicated enough but the XX of a female's genetics in some cases go haywire and they end up having the same DMD males get. That's truly tragic but the males and females with DMD are far from tragic!

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...

My book deals with the male perspective and you can see the challenges I endured 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 8 days left!!!!!