Introducing the relentless Mr DMD

I don't normally like to anthropomorphize DMD because it's not a person but if it were it would be like this.

D= “So you're a little kid, you seem happy, well not for much longer. You can walk and sort of run, but no jumping for you.”

Me= “Why?”

D= “...because I feel like it.”

(not going into the real why, it's complex and DMD wouldn't care anyway)

Me= “Can I keep playing?”

D= “For now, but I'll be back soon.”

A few years later.....

D= “Right, this walking must stop and get used to barely standing for a few months then wheelchair time.”

Me= “I'll get used to it.”

D= “That's what you think, ha ha”

Me= “We'll see.”

A few years later

D= “I've had an audit, you're enjoying that wheelchair far too much. Your arms must stop working now and just limply sit on the table but a little hand movement is permissible, hey, you might keep that function awhile.”

Me= “How generous, not.”

D= “Don't say I don't take things away, wink.”

A year later

D= “It's that time again, no more straight back for you, lets get twisty with Mr Scoliosis.”

Me= “Don't you ever stop?”

D= “I'm nothing if not consistent.”

D= “By the way, you'll have painful x-rays and you'll miss that surgery not before you think you're having it and crying first.”

Me= “I'll cope, that new game will distract me.”

D= “Well in due time we'll discus that.”

A few years later

D= “Well here we are again, you're getting too used to me. Shallow breathing and gradually losing your cough will be sufficient for now.”

Me= “Let me rest, please”

D= “No, you can't escape.”

Me= “grrrrrr”

A few months later,

D= “So you're 16/17, well, what a year is in store for you, that cold will turn into pneumonia and after 4 delirious days awake you'll go to hospital (3 times) and intensive care at that. You'll end up dependent on overnight ventilation and needing a mini tracheotomy just to survive. Also you'll leave school and I won't let university bother you either, I'm kind like that.

(many with DMD do go but my personal situation prevented it)

Me= “Oh why, that is mean, but at least there's solutions and I'm able to play my computer games.”

D= “For now.”

Around 19 now

D= “Let me make your eating hard and swallowing difficult very gradually so you don't quite notice ….”

Me= “What were you saying, I was playing a soccer game.”

D= “You'll see”

Early twenties now,

D= “Let me throw worries, depression and relationship difficulties in at you just for fun. Also say bye bye to that computer console gaming it's just PC's now.”

Me= “That's a really tough one for me, but I'll just use PC gaming and find art programs and DO something.”

D= “For now”

Mid twenties now

D= “Your heart is bad, I hid that well, but more hospital for you and heart medications a go go. You'll find out you're only 6 stone in weight and skeletal looking. You'll need that ventilator more during the day.”

Me= “I found pureed food so stick that silver lining to ya forehead. Plus I'm over 8 stone now.”

(Stone=14 pounds)

Present day around 32 years old.

D= “small hand movement draining away – check”

Me= “Using eye gaze mouse.”

D= “ I know you're scared of losing the ability to make art, so I'll toy with your head. Suctioning will take an hour every time well nearly every time, there's leeway. Also you'll be craving tracheotomy changes every month and get frustrated about your chest filling up. You'll need that ventilator 23 hours through nasal pillows and full face mask, possible feeding tube and full tracheotomy ventilator needed in near future.”

Me= “I will fight that all the way. Hopefully I'll adapt better than a borg :)”

D= “You'll look like one too”

Me= “Hey, I'm not that pallid. :P”

D= “Eventually you'll expire and death will strike.”

Me= “You'll expire someday soon. Sooner than you think.”

This is how vindictive DMD is and it's relentless. It's constantly chipping away either covertly or overtly. It's a different variation to the spoon theory of disability, because those affected constantly lose spoons with DMD. Those affected don't know how many spoons they'll get tomorrow. I hope you can understand its constant progressive nature. Thankfully faith and hope gets me through along with wonderful friends and a beautiful family.

P.S.

Don't feel guilty for laughing at the funny bits, I'm not all doom and gloom.

Psychosocial Interviews

On my website DuchenneMen, I'm conducting a new interview/survey on Psychosocial care aspects for adults with DMD. In most Duchenne care guidelines I've seen Psychosocial sections increasingly appear. The mental health side of DMD has only recently been explored and over 30% of those with DMD have mental health issues.

For everyone with this condition there are always down days in amongst the positive days and having someone to talk to may be very beneficial if you're an adult. I've never had professional counselling or anything like that and I feel it may have helped, especially during massive transition periods like losing the ability to walk and after a troubling time in intensive care at age 16 to 17.

Most adults with DMD have had to develop their own coping strategies to deal with constant loses of ability. Whether it's a network of friends, work or any number of things that get us through each day.

If you have DMD and are 17+ and would like to take part please email me at thebig_ian_g@btinternet.com.

Here's the questions;


Psychosocial Interview 

Name(optional):

Age(required):

1) Have you ever received counselling for DMD or any other related things?

2) If you did was it helpful?

3) If you haven't received this kind of care what do you do when you're having a bad time mentally? (Music, Friends network, playing games and talking to other health professionals etc.)

4) What are the things that most concern you about Duchenne's especially in your near future?

5) Do you think those with DMD living into adulthood should receive psychosocial care or counselling?

6) Would health professionals be best suited to provide this care or for instance a FaceBook group of fellow adults with DMD that invites health professionals in occasionally?

7) What other overlooked things should be included in adult care of DMD?

8) New treatments appear on the horizon but are generally aimed at those who can still walk, do you find this difficult mentally?  

What is it like having Duchenne's and a sore throat?

It's different for every person living with DMD but here's how it affects me. I'll be using a template from an earlier post to save tired eyes and arms.

Day one:

For a few weeks beforehand my chest was misbehaving and on this day I noticed I had a dry throat. I thought nothing more of it but gradually throughout the day it got much worse.

Day two:

I awoke hunched over with my full face mask on and it's a bad day. Mam asked the doctor to come over and when she arrived my mother took my ventilator off, moved a towel in front of my face as I dribbled on it and then the doctor examined me thoroughly and prescribed me antibiotics. I had two periods of suction as soon as I was up, in bed of course. My mother got me hoisted into my chair quickly because breathing is especially difficult when I'm ill on top of DMD.

Next my wheelchair knee pads were put into place then my mother covered my feet, legs and arms with fleece covers and put my wheelchair table on. Then she attached my wheelchair controls which are tongue powered and then I get in my elevator and went downstairs. I controlled my breathing in my lift all the way down hoping not to cough and get in a panic. Once I reached the ground floor it was off to my living room where my super mother put my nasal ventilator on and suctioned me for sixty minutes. I still haven't had a drink or food by this time because it just isn't possible while suctioning.

Once I was able to breathe without an overly noisy chest, my mother reattached my wheelchair controls which were removed for suctioning and left my nasal ventilator on as I drove into the bathroom where my mother removed my wheelchair paraphernalia and helped me use the facilities. Leaving my ventilator on whilst it's on battery adds difficulties of pipes hanging down and catching in everything but we've got a system of head positioning to help. Fifteen minutes later I was back in my chair and my mother then washed me and put my tee shirt and covers on whilst temporarily pausing my ventilator use.

After another quarter of an hour it was back into my living room where my mother set my computer up, and places a wooden block by my abdomen and places a drink on it. It was so refreshing to drink especially with a sore throat and this allowed me to take the antibiotics that my father went to get followed by painkillers. My drink was a laxative mixed with water and Ribena to mask the taste. My mother then cooked my breakfast of blended scrambled eggs and macaroni cheese (from a tin) which was also blended. As my mother prepared to feed me (my ventilator was off to eat) I needed to have suction which made my breakfast go cool but it was far more edible with a relatively clear chest. Then she gave me my regular medications followed by putting the ventilator back on and giving me a drink of water.

For the next few hours until my lunch my mother suctioned me every half hour to an hour. I used my computer to tell my friends and family what was going on and do a few important things. I was fighting tiredness whilst doing this and often dropped off into a nap as I was feeling washed out and in a daze. It was terrible feeling my chest fill with secretions and breathing through it is extremely hard. It's not great to keep asking for suction especially as my mother was very busy getting her meal sorted. I hate to bother her when she's eating because she needed sustenance and a break to rest her weary body and suctioning arm.

My lunch was served at eight at night because I'm out of bed at midday and once I was able to breathe without an overly noisy chest again, my mother fed me without my ventilator on. I controlled my breathing throughout eating because I didn't want yet more suction. My lungs ached after the ordeal they had endured so far. Once finished my mother reattached my wheelchair controls which were removed for suctioning and put my nasal ventilator back on and I drove into the bathroom where my mother removed my wheelchair paraphernalia and helped me use the facilities again. Half an hour later I was back in my chair and my mother reattached everything and got me set up on my computer until dinnertime.

My suctioning needs begin to tail off and I only have two or three more episodes before dinner. I was given more antibiotics during this time. I used this relatively calm period to do some digital art which took my mind off being ill on top of having DMD. My faith keeps me going throughout this illness because I knew and continually know that I will be free one day. However it's still mentally tough living with this monster on my back telling me metaphorically I'm going to get you!

Dinner arrives and the same routine of breathing carefully without my ventilator, eating which was fraught with swallowing issues and the toilet procedure ensued. Then back to my computer until bed time where I just relax by listening to calming music and drink my laxative laced Ribena. Then I switched my computer off and my mother and I took a further two hours to get to bed doing some suction and many other things along the way. I was hoisted back into bed which was adjusted to a sitting position, some small personal care tasks were done, my bedding was put over me and my night ventilator was put back on followed by the placement of my easy press button in my right hand. Once a few extra blankets were placed, my mother switched my light off and we told each other “I love you”. I finished off that day with eleven periods of suctioning which took anywhere from a few minutes up to an hour.

Day three:

I felt much worse this day as my throat really hurt, I even had to wake my mother up overnight to suction me in bed. My day was almost identical to the one before and even though I felt worse I only had nine periods of suctioning.

Here's what I look like being ill on this day.

Day Four and onwards:

We are now up to the present day and I'm feeling much better throat wise. I've had five periods of suction with another to come so we're moving in the right direction. Over the next few weeks hopefully my suctioning will get down to two maybe three daily periods which is normal for me. Also my throat should return to normal with no further recurrence hopefully.

Update:
Sadly my throat has relapsed and my chest shot back to eleven suctioning periods again only time will tell when this will improve. One just doesn't know what DMD has in store next for me. Keeping positive is extremely difficult when you feel unwell. 

More on a range of subjects can be found out in my book;

 

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/buymybook.html

My art can be viewed here; http://www.redbubble.com/people/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

Drastically reducing my productivity

As I sit here typing with my eye gaze mouse predominately, my arm hurts after a normal busy week doing art. It aches seemingly down to the bone at the top of my shoulder and it's very disconcerting especially thinking ahead. When will my hand held mouse days be over either through equipment failure or this insidious disease? Hopefully it's far enough away to not worry me although you never know, but I must prepare myself for it now.

I'm thinking of possible solutions and the drawbacks of just using my eyes. I would like to try to use a single press button to supplement the eye gaze mouse. All these things will mean that I will have to drastically reduce my productivity. Emailing and social media would take considerably longer and my art would have to change to something more basic and potentially not as fulfilling. The potential of changing art techniques is extremely stressful mentally because I love doing what I do now.

That being said I already get frustrated that my tired arm and DMD prevent me from doing the art I'd be freely able to make were I healthy. I ache to do regular not digital art because of the tangible artwork that could be produced at the end of the process. The frustration levels would be high just using eye gaze technology and even temporary depression may set in. It's going to be tough but I will persevere through the heartache and pain because of my faith and hope.

Finally I'm grateful for the eye gaze because I will still be able to use my computer to stop me going insane and to keep me in touch with you all. It'll be different and stressful but worth it in the end not least for the character it'll develop. So if I'm taking ages typing to you by instant message or aren't on social media much then possibly I'm dead, my computer broke or I'm using my eye gaze! 

More on a range of subjects can be found out in my book;

 

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/buymybook.html

My art can be viewed here; http://www.redbubble.com/people/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

Ongoing diagnosis

I see a few parents who remember their sons or rarely girls diagnosis day down to the hour. The news their child has DMD is heartbreaking and terrifying all rolled into one. For the affected individuals however we have many diagnosis days over our lifetime. Many are thinking about their differences and when the body fails they pluck up the courage to ask “What is going on?” or words to that effect. The current advice is to only answer the affected individual's specific questions so as not to frighten or hurt them. It's difficult for parents to do this especially when potentially anyone in their community could tell the child too much information.

In my case, at about fifteen I was more or less fully aware of DMD but I was in denial that I'd follow the natural progression. Alas I followed it to the letter. As a younger child once my questions were answered I didn't dwell on DMD until the next question arose of course. I and many like me focused on the moment and got back to childish fantasy and games. It's only now that I struggle with DMD but certainly not constantly. I'm often over tired, chesty, hurting and yearn to do what I cannot do. Death is never far away when you live with Duchenne's in your thirties. It's interesting how an adult mind finally starts understanding things but then the anxieties, worries and fears also get heightened. Some with this disease suffer with anxieties as children but every individual is different.

It makes me think why do the parents get so devastated at diagnosis day and subsequently on its cruel anniversary. I think parents have every right to be upset by the potential early death and horrible physical limitations. However it's more complicated when you mourn the loss of potential marriage, the possibility of being a sports star, missing out on a top job and a variety of other things. Things like this are upsetting but we shouldn't invest our lives grieving on these material things. Marriage is not guaranteed for any human, sports stars have brief fame and fortune but many end up injured and some bankrupt and potentially being a lawyer and so on is not impossible even with DMD.

The important things to focus on are making sure we learn to do the right thing and what we ought to do instead of what we want to do. Being kind, polite and selfless will be enormously helpful when the affected individual needs twenty four seven care. Asking for help is difficult especially if unkind words are used, it's far better learning those lessons of kindness and being taught how to behave early on. Focusing on what you can do is cliché but it definitely works although not always because everyone gets their down days. There's always something we can do, such as art, working with computers and code, studying, being an accountant, organizing events, writing and so on.

I might not go out much or have a university degree but I'm an artist and an author despite not being able to breathe entirely on my own. We can definitely learn from the young child's way of living with DMD. Maybe we should always think like a child and focus on right now living this moment in time. We should dream about good things and focus on doing something rather than live in fear and what if land. Mentality will help you through this disease, finding silver livings and remembering your blessings does help. There's always someone worse off, at least I'm not “locked in” unable to talk or blink or do anything whatsoever. I'm thankful for what little I can do and parents you're amazing but please also focus on what you can do too! As well as helping your child focus on their abilities in the face of disability. This post is not meant to hurt peoples feelings but rather I hope you can be encouraged by my words.


More on a range of subjects can be found out in my book;

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/buymybook.html

My art can be viewed here; http://www.redbubble.com/people/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

Different Perspectives

What's your morning routine like? Does it go something like this? You get out of bed, sloping off downstairs maybe in your pyjamas casually glancing at the time. Then you switch the kettle on or coffee maker and have that shot of caffeine, followed by a shower and getting your breakfast ready. Maybe you dressed after your shower or after breakfast and then you would start your commute and your day. Obviously everyone is little different but you get the familiar picture.

Ah, my routine, now there's a different story altogether. I awake hunched over with my full face mask on and today is a bad day because my chest decides to misbehave. So I realize I might need suction as soon as I'm up. I press the easy click button wedged in my right hand and my mother appears, then she takes my ventilator off, moves a towel in front of my face as I dribble on it, scratches my head and gets me hoisted into my chair. That takes about fifteen minutes.

Next my wheelchair knee pads are put into place then my mother covers my feet, legs and arms with fleece covers and puts my wheelchair table on. Then she attaches my wheelchair controls which are tongue powered and I get in my elevator and go downstairs. Once I reach the ground floor its off to my living room where my super mother puts my nasal ventilator on and suctions me for thirty five minutes. I still haven't had a drink or food by this time because it just isn't possible while suctioning.

Once I am able to breathe without a rattling chest, my mother reattaches my wheelchair controls which were removed for suctioning and removes my nasal ventilator. I drive into the kitchen to take my inhaler, then I go into the bathroom where my mother removes my wheelchair paraphernalia and helps me use the facilities. Fifteen minutes later I'm back in my chair and my mother then washes me and puts my tee shirt and covers on.

After another quarter of an hour it's back into my living room where my mother sets my computer up, and places a wooden block by my abdomen and places a drink on it. It's so refreshing to drink after being awake an hour and a bit. Sadly I rarely drink anything with caffeine, for me it's a laxative mixed with water and Ribena to mask the taste. My mother then cooks my breakfast of blended scrambled eggs and macaroni cheese from a tin which is also blended. Whilst my mother does that I check my emails and news on the computer. Then my mother feeds me and gives me my medications followed by putting the ventilator back on and giving me a drink of water. Only then does my day properly start after a two hour marathon. On a good day it's an hour and a half and a truly bad day it could be three!

Think about that while you're hard at work or commuting. If you feel like inviting someone with DMD to your home if it's accepted then please do! Even better ask to visit them because that will really brighten them up. If you're expecting someone with DMD for an appointment, and they ask for an afternoon slot please don't complain but help them do that. Understand the often many hours it can take to get out of the house and don't worry if we're running a little late. Definitely don't give them hassle about it because Duchenne's is hard enough without further complaints. Hopefully you'll make lasting friendships with those living with DMD and their families.

More on a range of subjects can be found out in my book;

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/buymybook.html

My art can be viewed here; http://www.redbubble.com/people/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

Constant Reminders

I like watching cooking shows or people doing things like building or walking or generally doing something productive. Which strikes me as strange because I cannot eat normal food, move my hands further than a few millimetres and definitely can't walk. Whatever I see everyday, there are constant reminders of what I'm unable to do. Most of the time I don't let the negative get in but sometimes there's a huge pang of “I really want to try doing that”, or words to that effect.

I had one of those moments a few days ago whilst watching something on social media. A young man was discussing his love of calligraphy and penmanship using actual writing implements he made himself. He was lamenting how technology is destroying traditional handwriting and argued that one shouldn't be at the detriment of the other. He explained the process of handwriting actually helping people to learn more effectively. I was really inspired but then slightly crestfallen because I couldn't do it myself.

He took ages completing school work because of this 17^th century-esque script. When I could write by hand, I took ages completing my work because my muscles were failing and I was getting pain in my whole arm. I finally had to stop and have someone write for me which was a relief and simultaneously a tiny bit heartbreaking. I'm very thankful for computers and on screen keyboards which is enabling this post but technology has its limitations.

Another similar feeling of wanting to do more hit a few weeks ago whilst attempting to do some art on my laptop. I was trying to compose an image of a field of wheat with a tree in it. I just couldn't do it to the level of detail I wanted and that familiar arm pain was nagging away as well (which it is now). I was deflated and getting depressed and just couldn't do any more art that night. I bounced back with a lot of faith and that urge to do something firing me forward. I try to keep doing things I can do until eventually they go too. I'm sure there'll always be technology and something to do, but the straitjacket gets ever tighter and then it'll be me versus my mind when my body can't do the things I'm good at. Thankfully I have great hope of an astounding future where if I make it I'll do more than I can dream of and that keeps me going!

More on a range of subjects can be found out in my book;

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/buymybook.html

My art can be viewed here; http://www.redbubble.com/people/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