My super mum

As most of you know I have DMD but some may not know that I also have a mini-tracheotomy in my neck which means secretions that regularly build up in my chest can be removed. This means that I need suction catheters fed down my throat through this mini tube to clear away the excess mucus. The person who does this most is my dear Mum and my does she work hard.

Each time I need suction it usually takes an hour to complete and it may need doing three times or more throughout the day. It’s a boring laborious task but I’m very grateful because I wouldn’t survive for long without it. It reminded me the other day of a Victorian prison task whereby you crank a handle turning a numbered dial to 10000. Suctioning is an everyday thing and seems never ending but unlike the prison task it certainly isn’t pointless.

My Mum is a real star for doing this even when she doesn’t feel up to it. Thank you Mum it does mean so much to me and thanks for all the myriad things you do for me.

  

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 

A little bit about my art...

As some of you will be aware I am a self-taught digital artist although by no means professional. I thought I'd step away from information about Duchenne this week and concentrate on things that we can do. Not all of us may be able to hold down a full-time job because of the difficulties Duchenne can throw up. But instead of lying in bed all day or Facebooking or playing computer games there may be things those with Duchenne could do. Now I know that some people with Duchenne are so severely disabled that it would be impossible to even do this so this is to the ones that feel able enough to do something.

To keep myself occupied I have written the book this blog often talks about, I have also written an e-book on poetry and I have converted my written book into e-book also. Apart from that though since about 2005/6 I found a really cool art program I liked called Corel painter and have been painting and designing since then! It is absolutely something I love doing and gives me a definite reason to get out of bed and keep living. It may not be much but it makes me happy! So below is a collection of my artworks. Enjoy!

 

As you can see I have been doing a lot of jewellery designs and this has become my latest 'passion'. I can certainly design you one if you would like a design. Here's my artwanted blog article to explain.

Taking bespoke Jewellery Commissions,

Commissions, (Please email me for availability at thebig_ian_g@btinternet.com, also please do send your design ideas, i.e. whether you want a ring or pendant etc or any favourite gems you have. If you prefer a completely original design I'll do that!)

I may sometimes work from your photographs (please make sure you own the copyright or have direct permission for use.)

I'm a digital artist, so the product I'm offering is a digital image (JPEG) which is priced at $3. We can discuss payment privately by email. I usually take 1 to 2 weeks to do a Jewellery design. I can only do one at time because of my disability so times may vary a little.

Things I won't paint- anything basically offensive, again that will be ascertained via email.

I look forward to working with you!

Ian.



More links about my other activities;


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 many faces of suction

It's been awhile since my last blog entry but here goes. Personally I need my chest/lungs suctioned out everyday as and when needed. 12 years ago as a result of the ravages of DMD I lost the ability to adequately cough away any mucus from out of my lungs. Consequently I had a mini tracheotomy fitted to allow suction catheters to be introduced into my trachea to remove any excess mucus. If this were not done I would surely choke and well you know the rest.
That doesn't mean there's no humour involved as there have been a few funny experiences. Like when Mom gets all prepared with sterile glove only to find no catheter attached to the suction machine! Another aspect is that no 2 people suction me out in the same way which takes some getting used too. Mom is the best at doing it with very fast swift movements to clear my chest out, my Dad uses slower movements and goes further down the trachea. Going back to humour one my elder sisters always makes me laugh by calling my secretions "phlegmbouyant" and describing a horse race as she does it!

Find out more about suction and secretions in my book DMD Life and art!


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 

Always great to have feedback

Over the last few weeks two ladies have contacted me saying how much they appreciated my book DMD Life art & me. One has a child with DMD and the other had a friend with it. You never know where your book is going and exactly who will read it. I've heard of my book being read by more than just the purchaser which I never really expected. I was glad that anyone read it at all I mean who would buy something about little me I thought originally. Although naturally I had a tiny hope I'd be a bestseller but that is only ever a dream, realistically I'm glad it's spreading some DMD awareness around. The more that gets recognized the better it'll be for those families affected by it. You can't do anything without teaching people. I know my book isn't perfect but the story and the awareness transcend the small typing errors.

If you would like to know more please use these links;


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 

You set the price! OFFER ENDED

Hi everyone, I have a promotion. You can buy my ebook (pictured above) for ANY price YOU choose on smashwords.com. Poetic Diversions was written last year and is my second ebook! Now you don't need to be a poetry aficionado to enjoy my ebook nor do you need a complex understanding of poetic concepts. All you need is an open mind and some quiet time to read. All you must do is sign up for a FREE smashwords account then buy this ebook for ANY price you choose. Either free, $2.99 or whatever you feel my work deserves absolutely no obligation to buy. Enjoy!

FIND MY EBOOK HERE;

https://www.smashwords.com/books/view/206857


UPDATE - This offer has ended, in fact a few weeks ago but apologies for being tardy in correcting this. :)

  

Not getting insular

 

When you live and struggle to get everything sorted out with DMD it can consume your entire day and life forcing other things to the side. I've often noticed that our disease is pitted against cancer or other diseases and have been guilty myself of griping against all the money and research lavished on cancer. It's definitely not fair to do this because you risk losing empathy for your fellow man as other diseases really are just as awful and devastating as Duchenne's. There are other things that are also important such as the world news for instance did you know the ring of fire is waking up increasing volcano and earthquake activity and terrible weather is getting more and more common. This may seem inconsequential but if these events happen to a family with a child/adult who has DMD it could be life threatening. If you can prepare for power failures and emergencies that would be a great idea.
I've emphasized those outside areas enough now but there's one area within the life of DMD is important and that is parents getting too focussed on their young child's immediate condition. While I think it's imperative to take things one day at a time it helps to think about accessible housing before wheelchairs enter the picture. Definitely encourage education and think about transition care because after 16 things start to get much harder as proper healthcare in the UK at least can be patchy at best. We never knew anything of transition care when I was a child as I was given a 13 year life expectancy and now I'm 28 this planning definitely might have helped.

Discover what happened when I was given this life expectancy 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