Unexpected things

As you may know I have difficulties eating solid food and I know a few other guys who need pureed food like me and a few who have no problems there. There's such variation in DMD no two people are alike.
However I do need pureed food and I saw a new dietician the other week (I've been in contact with dieticians for the last few years after a long absence) and none of the others ever mentioned where I could get pre made pureed food but this one did!
I've recently tried some from a company called Wiltshire Farm Foods and their really good. Their reasonably priced for what they are and there's some variety too. My parents who I'm very grateful for have been preparing meals for me for awhile, ranging from beef stew to slow cooked duck in red wine all pureed for me.
If you have pureed recipes or recipes that could be pureed please feel free to comment below to help all those who eat it and read this post.

More info about DMD in my book DMD life art and 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

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

Mysterious illness

Over the last week I've had a strange chest problem where my lungs felt really terrible but I had no cold or flu symptoms. Obviously it appears to be a chest infection but how I ask myself. Well either something went into my chest via my mini tracheotomy or it was something else. I remember being told by an intensive care doctor that there was an increased risk of infection with a tracheotomy. While that's true we thought the benefits outweighed the risks and overall that has emphatically been true. Read more about mini tracheotomy tubes in my book. There is one other way I could have developed this illness that being aspiration. Basically that means swallowing food into the trachea and that usually leads to infections. Those with DMD may develop this if they have particularly weak swallowing muscles. Not every person living with DMD will weaken to the same extent in the same areas.  In any case I'm not sure what happened but I'm recovering now and that's the main thing.

Read more about DMD 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

Food for thought

Available in EBOOK and PAPERBACK versions

I remember a study (I forget the title) about DMD that mentioned eating and something that definitely affects me. It mentioned those older individuals who after eating have breathing difficulties because their full stomachs push on their lungs. It's worse for me because I have scoliosis which has already impacted my breathing. I find after eating my final meal of the day I can't wait to go on my ventilator because I find it difficult to comfortably breathe. As my stomach empties this difficulty starts to lift and my breathing is less laboured on my ventilator.

Extract;
...I ended up on a ventilator at 16 and I have scoliosis which isn’t very good at all and has caused complications...

It's strange the kind of things you see and experience living with DMD. Read more on my many varied adventures with food in my book DMD LIFE ART & ME.

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/

EBOOK available here; https://www.smashwords.com/books/view/69702

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.

Making adjustments

Available in EBOOK and PAPERBACK versions

It's always difficult to watch my family eat different things to me because I need to eat pureed food. So it's fantastic when my mum makes something we can all eat obviously there are adjustments for me. For instance tonight we had cottage pie, the main ingredients were all pureed and I had ready made mash. It was amazing and inclusive. It's always empowering to do something everyone else can.

Extract;
...Eventually she referred me to a lovely new local dietician, who immediately put me
on food supplements (both milk based) and boosted the types of pureed food I could have (namely by adding cheese, milk and thickeners to my food) ...  this worked and I regained three stone over the coming year...

Above was the first time I ate pureed food, I was 6 stone at the time which was dangerously thin but I went back to 9 stone. So I'm incredibly grateful for the food I do get but being included is the metaphoric cherry on top. Read more about how I'm included in family 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.

Equipment takes on a new dimension...

For most of us 'equipment' could mean that new camera you always wanted or a new car to get to work. Equipment takes on a very different meaning for those with DMD. For me it means basic equipment just to function normally. Without hoists, a wheelchair, ventilators, food blenders and a special bed I couldn't even get to my computer. I'm extremely grateful and glad these things have been invented!

Extract;
...I had to have additional equipment added to my house, so I could be transferred from a wheelchair to my bed; also to get on the toilet and in my bathtub. I had two ceiling hoists installed...

It's so vital to have these helpful pieces of equipment to make life that bit easier. Read about all those helpful devices in my book DMD LIFE ART & ME!

You can buy my fantastic EBOOK version here; https://www.smashwords.com/books/view/69702

Available through 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.