What does that feel like?

Recently my newer once weekly carers have been trained to clear my chest of mucus using a suction machine. They often ask what does suction feel like because having catheters put into your windpipe certainly isn't natural! It's so hard to describe because if done properly it doesn't really feel of anything. On the very rare occasion I've had really painful experiences too. On the odd occasion I'll get a defective catheter with a severe bend at the end which you can't always see until it is too late. That feels like running a dagger down your windpipe certainly an ouch moment that causes spluttering fits in my chest. I go into more detail in my book, here's a little taster......

Extract;
 ....if my chest isn’t sucked out the mucus builds up and can block my airway all together. When the suction catheter is fed down it feels like another kind of blockage but it doesn’t generally hurt. When suction is engaged I get a certain amount of relief as the secretions are removed it’s as if someone turned my air back on again.....

Read more about the weird and wonderful world of chest secretions 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.

The positives

Available in PAPERBACK and EBOOK versions!

I've heard many people ask what are the positive things you can take from DMD. While it is a DEVASTATING diagnosis and those living with it would rather not have it if their being seriously honest. There are amazing positives though like the community of those affected by DMD and their families. Getting in touch using social media sites has really helped us share experiences of life with Duchenne's and help each other. DMD has taught me positivity because when you reach any goal by sheer determination it tends to keep you happy. Most of all the best thing about DMD is those days spent with your family forgetting you have DMD!

Extract;
....I still despised the fact that this disease was robbing me of so much, however my positive and determined attitude just kept me going....

Read more about the positives 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.

Never Ending

Available in EBOOK and PAPERBACK versions

My mum works incredibly hard every night. After an hour clearing my chest she has seemingly a never ending list of jobs to do. She truly is amazing! She treats my hands, feet and ears which need cleaning and some small medical treatments. Then she cleans my teeth and puts me in the lift. After arriving in my bedroom on the first floor she puts me into bed, puts my ventilator on and sometimes charges my wheelchair. THEN she can finally go to sleep. On a good night we might end up sleeping by 3AM on a bad night 4AM. I need to try harder to go to bed but it's difficult for both mum and me.

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. Firstly it attacks the skeletal muscles, especially the legs, hips, arms and spine...

Read more about how this diagnosis affected my mom 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.

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.

Unhealthy Tendencies

Available in EBOOK and PAPERBACK versions

I used to drink gallons of fizzy drinks and eat all kinds of junk. I suppose I got into the destructive thinking of "what's the point in taking care of myself when I could die soon anyway". By living like that it was actually making me sicker, this would be true for everyone in that destructive pattern. So I realized that I needed to eat better since I had a reawakening so to speak.

Out goes the fizzy drinks and in goes the water, I can not eat junk now so I'm naturally protected from that. I eat meats, some fish, vegetables and fruit thanks to the pureed food my mum makes. I take vitamins and minerals too. It's definitely calmed my heart being off the caffeine and my skin and weight are all improved. If you eat well it also helps your mental state and I'm happier now. You may have a life threatening illness but there's no need to speed up the destruction in your body!

Extract;
...I discovered some food I could eat on the second day I was admitted. I was discussing with a nurse about my eating difficulties and they suggested that I try the puree menu the hospital had. One funny memory I have was upon seeing a pureed
corn beef hash. I enquired “this is a normal piece of meat, how am I supposed to eat it?” After my first mouthful I had realised how foolish I was as the meat thinned out and turned out to be liquidised...

Read more about food 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.

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.

Slings!

Available in EBOOK and PAPERBACK versions

I still have one working hoist in my bedroom which is a huge mercy. These hoists come with a variety of slings that support the users. I have grey slings that really work well for me but after they are swapped (I have two) every so often I end up in some comical positions. Yesterday was the same, sometimes this gives me pain but I persevere until sleeping time when I can comfortably rest in my bed. The next day I get my mom to alter the sling and it brings amazing relief! Positioning is one of the biggest issues with DMD once full time wheelchair use is established. Carers willing to help you get comfortable are vital.

Extract
...Two of the carers helped put my hoist sling on. They would lean me forward and shove the fabric sling down my back. Next my legs would be individually raised and the corresponding ‘leg’ parts pushed under. The hoist would be rolled over and the sling straps hooked on to the metal crossbar dangling above my head...

Read more about my sling adventures 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.

It's not simple

Available in EBOOK and PAPERBACK versions

As you may or may not know my hoists are condemned and I'm waiting for replacements. Sadly this means no bathing which isn't great! Today I had to wash my hair. It was a complex operation of covering my chair with a towel and getting a water basin and sloshing water over my head. The water goes everywhere and thankfully missed all important electrical equipment. Still not a fun experience though.

Extract ...as I know only too well life tends to throw a spanner in the works...

While doing this I invented in my mind a hair washing gadget but I think they exist already! That's looking on the bright side. Read more about other hair raising experiences 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.

Doing the normal things!

Available in EBOOK and PAPERBACK versions

It was so liberating to go out to visit my friend yesterday. We drove through amazing breathtaking picturesque scenery. I really enjoyed that and loved the different colours of the trees. It's great not to think on DMD but to appreciate God's beauty. I even got some photo's in from mom (only a tiny reminder of DMD), great art inspiration. Just what I needed plus it was awesome to see my friends.

Extract;
...I liked to go on day trips away from our main holiday destination to visit museums and other interesting sites. I’ve seen an airplane museum, train museum and various
shopping areas. I took my chair (reluctantly) on a canal barge and on a boat cruising up Lake Ambleside in Lancashire....

Enjoy those precious moments in your lives! You read through mine 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.

The other gold medalists

 Available in EBOOK and PAPERBACK versions

While the athletes show their sporting prowess in the British capital. It makes me think of the gold medalists in my life. My mom definitely wins a gold for her care, the amount of time she spends making my meals is astounding. The hours she spends clearing my chest of secretions deserves a medal in it's own right! She has dedicated 28 years to looking after me, that definitely deserves recognition.

Extract
...My mother is a mum first and a fantastic carer second and we are really close. I cannot tell you how grateful I am for all she has done and continues to do.....

It's great to think of those inspirational figures in our lives. Find out more about mine 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
 
Join my Facebook group about DMD LIFE ART & ME here; https://www.facebook.com/groups/170093393005133/


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.