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

Eating with one arm behind your back

Pureed food has been a really important addition to my diet as it's the only thing I can eat now. Without which I probably would be chowing down on liquid supplements or worse! I'm really absolutely grateful it was shown to me a few years ago and it has helped me stay alive. The only downside is the lack of textures in any meal you have it's like eating with one arm behind your back. It's good food but I'm not sure many people realize how important texture is when eating a meal without it food just lacks that bit extra. For instance eating a sweet potato wedge lightly fried and seasoned is very different from plain liquidized sweet potato puree. The reason I don't add salt is because I've been advised to have a low salt diet for my heart. There's very little you can do about a lack of texture it takes a lot of they joy of the food away. I always try to remind myself that food is energy however there are things you can do like adding garlic or spices and being creative with mixtures of food but you can't really replace textures.

Read more about my puree adventures in my book DMD Life Art & Me! Don't forget you can buy this in ebook form see my links below;


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