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

The daily uncertainty

With DMD you never know what another day will bring. I know in life everybody has this same dilemma but most people wouldn't think that tomorrow they couldn't do something they did yesterday like writing with a pen. I have no idea if I can move my computer mouse the next day or whether a new pain would come along. (Coincidentally it's been many years since I held a pen!) Every month or so when I least expect it my fingernails get that bit too long. To most that would be no problem but my blog post describing my fingernail cutting exploits certainly shows how difficult it can be for me! Increasingly it's getting harder to use my mouse when my nails are only a tiny bit longer, it's amazing how difficult it becomes just to click the button. I never really know what could next fail and that's where being positive and hopeful comes into its own. DMD can certainly make you think and that's something it will never take away from me, the power of thought.

Read more about my daily uncertainties in my autobiography 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

Communication is even more vital

Communication is even more vital for those with DMD especially staying in touch. Every month I need my mini tracheotomy changed which is because the manufacturers recommend it and at the end of that time my chest usually suffers a little. Organizing this change usually takes place via email or the phone and it usually goes fine without any problems. However this didn't occur during my most recent tracheotomy change, I emailed them as per normal but after days there was no reply. So I had a very rude awakening yesterday as I was told my tracheotomy was being changed in 30mins this was at eleven a.m. late for many but with my sleeping hours that was really early! I was tired and my mother had to quickly rush me out of bed and get me ready and we just made it. Phew! I wasn't expecting a day of coughing and a tracheotomy change that day. It's nothing major but a simple reply would have saved my mother a rush and I could have got prepared. Surprises and Duchenne's don't often mix!

Read more about tracheotomy changes and communications 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

New isn't better

I've been having problems with my hoist for a few months and my lift door has decided to play up over the last week. It just goes to show how new isn't better. Both of these were relatively recently installed the lift about 6 years ago and the hoist 12 weeks ago and both have had problems from the start. My old equipment lasted nigh on 20 years without any massive problems until the end of their working lives. The reason they couldn't be fixed was a belief that they were simply too old or that nobody could repair them which seems quite defeatist. Hopefully the latest small problems will be fixed soon but the quality just isn't there these days. One day a great sense of quality will be restored and I can't wait!

Read more about my equipment dramas 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

Something I've noticed

Recently I was weighed and have lost 6 pounds. Usually in this day and age that would be a good thing but for myself that's not great at all. I was trying to maintain a weight of about 130 pounds but dropping to 124 means I need to get some weight on! So I've started fortifying meals a little bit extra by using custard and milk and cheese in some of my meals. It's surely a tasty way of bulking up some weight! Failing that I'll start taking food supplements after my next weigh in. When I lose weight I hardly ever notice what's going on and maybe that affects others with DMD too. It is so vital to be weighed because losing dangerous amounts of weight is all to easy. However this might be anecdotal but I've noticed that every time I do gain weight my wrist starts hurting so who knows maybe it's working already!

Read more about my experience with dangerous weight loss 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

The small things

Every time I need my finger nails cut it is always a daunting time. With my hands all mangled up because of severe contractures it's impossible to straighten my fingers so cutting is a challenge. My mother has to force my fingers into a place where my nails can be cut. A good bit of advice for those in a similar position is to buy a special nail cutting scissors. They have kinked and shortened blades that help get in those awkward gaps. I've had a few incidents of cutting too close to the quick and drawing blood which makes my whole finger throb in a little pain. This is unavoidable as my hands really are twisted up. You never hear about nail cutting in a DMD textbook! The amount of freedom my hands have after my nails are cut is really liberating as I can use my mouse so much easier and create more artworks.

Read more about the things taken for granted 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