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