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 

Things I notice

When I wake up I have no idea what the time is. I've tried electronic clocks but they break often and annoy with their bright lights so they went out lol. I have analogue clocks on my wall but my shortsightedness prevents me from seeing them properly. If conditions are right (if enough light flows in, if I squint and lay in the right place) I can just about make them out. This has led to some funny things happening! Often I call my mother with my environmental control at just the wrong time, the poor thing has missed many cups of tea, been on the phone, been using the facilities or collecting the shopping. My unusual "alarm clock" called my bladder woke me up this morning about an hour earlier than normal so I was very confused to see the time!

It's often the tiny things that you wouldn't necessarily think even relate to DMD that can be vital or very helpful to your life. Again the textbooks are very sparse on this kind of thing. Someone should write a better one ;)

Well you could read DMD LIFE ART & ME to find out more, while not a fully definitive textbook it certainly puts some flesh upon those bones!


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

Things you miss

There are certain things you can miss with DMD that you would not necessarily expect. I expected walking, breathing and possible heart difficulties but I didn't expect to miss out on playing games with my niece or nephew. It's difficult watching them when I want to help my mom out by occupying their minds. I'd love to draw and help my niece colour in or help my nephew play with his cars. It's also difficult when I'd like to hug them but all I can do is talk which is fortunately really enjoyable. This isn't some pity party because I'm so blessed to have a wonderful family who help me so much. The only way I can cope is with two things hope and positivity. It's not easy but it is worth it because there'll always be things you can do!

Extract
 ... I hope I continue seeing [my niece and nephew] growing up just to see their smiles and carefree joy...


Read more about my 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

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 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.

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.

Dependence

Available in EBOOK and PAPERBACK versions

When the things I need to help me live a basic comfortable life work then everything is going great and I feel I can do most anything. Things like a working blender so that I can eat, my lift, my adjustable bed, my wheelchair and a few other things. A couple of days ago my lift decided to break down and that left me stranded in my room until hopefully tomorrow. This has made me think about the dependence an adult with DMD has upon these basic elements.

Extract;
...It’s easy for them to pitch a tent and live up a tree getting closer to nature, but for the dependent people like me we need our wheelchairs and ventilators charged and reliable power for suction machines, hoists, beds, mattresses and food blenders. The drastic changes proposed by environmentalists and governments never factor in these problems. They just talk about ‘keeping the lights on’ but for me and others in similar situations it is a question of life or death....

When one of these elements fails, it can have a huge impact upon my life. It just goes to show that there are more important things than just the Internet or Facebook. A close-knit family really does help during these times of temporary emergency and the help of a few kind individuals. There is always hope!

 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


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.

Thinking about others

Available in EBOOK and PAPERBACK versions

DMD teaches you one thing in particular and that's thinking of others. When I see my mother busily going about her daily routine, washing, cleaning, preparing food which she puts hours into and generally working very hard I try not to ask for lots of things. Once I'm set up on my computer I'm pretty much set. You need to think of others and I certainly could do a lot better on that front myself but it's a good life lesson.

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...

When you are so dependent on others you need a good working relationship and observing others needs is vital. An example would be to ask for help or a drink etcetera before your caregiver/parent sits down to rest or eat. It's not easy and sometimes if you desperately need something then you have to ask, but there's always a right way to ask.  Read more about those working relationships 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


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.

Distraction to DMD

Available in EBOOK and PAPERBACK versions!

When I was younger and DMD wasn't biting much going on day trips and vacations was a great distraction. We still can see and think and experience transcendental things, just a change of scenery can offer new inspiration.
So numerous were my good memories that to fill my book with them would have taken up to much space! So I summarized.

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. I saw Alum bay on the Isle of Wight, with its beautiful multi-coloured sands...

It's good to experience good things! Read more about my 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

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

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.

DMD helped raise me above the clouds

It's not all pain, surgeries, aches and difficulties having DMD. It has led to amazing things, I've visited a former prime minister, seen an MEP at school, been on a fantastic vacation to America amongst many other things.

One such occasion was when I was offered a ride in a helicopter, I only had this opportunity because I had DMD. So you can see Duchenne has its benefits, although it can never really make up for it but you do get wonderful memories!

Extract;
...Suddenly the engine powered up with a thunderous roar and the rotors started
whooshing by very swiftly, turning into that familiar black blur. We quickly took off, climbing higher and higher; rising above thin clouds. All the people disappeared into distant dark specks. The helicopter tilted forward and we were off, about to explore the world around us...

Explore more of my wonderous memories in my book DMD LIFE ART & ME, buy the ebook and paperback versions 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.