Inspired Life-DMD Life art and me

Sunday, 6 March 2016

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

Wednesday, 2 March 2016

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;

Wednesday, 10 February 2016

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;

Sunday, 7 February 2016

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;

Sunday, 31 January 2016

10 Helpful Tips

While I constantly lose functions especially when DMD really starts biting I've picked up some tips along the way. Here's a list of things I have found useful;

Macro form filling software is invaluable especially with repetitive tasks like logging in to email and other areas. Please look at shortkeys lite for a free program that does this for you with a minimum of hassle.
On Screen Keyboards, these are like precious jewels when conventional keyboard use becomes impossible. Before this I once used a word processor and its symbol function to type words then copy and paste them into whatever I wanted. Very tedious indeed. An invaluable part of this is the predictive text that some O.S.K.'s use, which cut down on keystrokes enormously. If using Windows operating systems please look for accessibility tools and the On-Screen Keyboard, or search online for alternatives.

I've found pinning useful programs to the start menu bar on windows 7 is enormously helpful, because searching for programs on the desktop and elsewhere is physically tiring. Energy is at a premium when DMD is involved.

Eye gaze technology is the newest weapon in my personal fight against DMD. Many exist out there and this software tracks your eyes to move your computer mouse accordingly. It can even help with clicks, this is done by blinking or using a switch interface etcetera. I use a Tobii pceye go, which MDUK funded because it's rather pricey.

An environmental control is absolutely vital in my opinion because it enables me to alert my mother. It's regularly saves my life, most recently last night when my chest filled with secretions and I quickly alerted my mother who suctioned me out. I hold an easy press button in my hand that connects to the device and a few clicks later I call alert my mother, move my adjustable bed and phone out. I use an environmental control by Possum which is operating in the UK.

Straw clips are extremely helpful for keeping drinking straws in place especially while using a nasal ventilator. A huge thank you goes out to the late Carl Tilson for this tip which he gave just before his death. Please look on Amazon for these.

Alternative to, is a fantastic website for finding cheap or free alternatives to mainstream software. Things like Photoshop, painting software and many other useful things.

I really like f.lux software which I found recently as it takes pressure off my eyes. After sunset it turns my screen orange taking away the glare of the normal blue light waves. It's helpful because I'm on my computer all day as are many with Duchenne's.

Keyboard shortcuts are very useful especially while surfing the internet, for instance CTRL L, highlights the URL which allows easy copying. CTRL K highlights the search box especially in firefox. CTRL F opens the find word box which helps you locate text on webpages.

Light weight computer mice also really help me to use the computer and I have briefly used voice recognition software to also help with writing.

So there you are, that's a list of my favourite helpful software, devices and practical solutions. Feel free to add your own to the comments section below.

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

Wednesday, 27 January 2016

When normal isn't normal

Lately I've been feeling strange especially when off my ventilator. I've had headaches, breathing difficulties and my heart rate has felt fast, registering 88 on my personal pulse oximeter the other day. I've felt rotten but after all the tests everything appears normal, ECHO scan normal, ECG normal, lung function normal and blood gasses normal. So what gives? Am I a psychosomatic malingerer, imagining these health issues with my brain causing observable symptoms? I hate the disconnect between how I feel and how tests say I am. I feel bizarrely like a fraud because have I been imagining it? I don't think so but I can't even be sure I can trust my own mind any more. I'm having more tests done and that has included a blood test. Only time will tell on that one.

This may sound strange but living with a life threatening disease makes me prepare for death every time I feel unwell. Have I done enough Spiritually? Have I sent the right messages to my friends? Have I done right by my family? Will dying hurt and how will my family cope after I'm gone? With Duchenne's you're constantly looking down the barrel, with a stalker following you everywhere. I'm tired of this merry-go-round of preparation and anticlimax as I keep living with this uncertainty. Life is precious don't misunderstand me, but prison weighs heavily on me. I long for true freedom from this bodily prison, I've done as much time as a bank robber yet I have not committed any crime. Don't get me wrong I am sinner who is often wrong just not in the instance of being born with DMD.

The expectation of positivity weighs incredibly heavily on many with these sorts of illnesses including myself. Anything other than guts and determination can often be met with criticism and a pull yourself together attitude. I have enormous hope for an awesome future after death, that keeps me going and how my parents brought me up also gives me positivity. But, I'm human and have the ability to experience negative feelings and sharing them isn't wrong. It doesn't make one a miserable give up merchant. We/I need to let them out, let tears flow and release all the tension that builds up within.

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

Thursday, 7 January 2016

Trade Offs

In every life there are trade offs that people have to make whether it's stopping that extra night out because of money troubles, or whether to do your hair in a certain style with time running out. In a life with DMD there are also trade offs but especially in the older years they can be quite serious.

Personally I often have to make almost daily trade offs especially when my chest is misbehaving. For instance if my chest is really bad then every transfer using a hoist could make me cough so sometimes I must choose whether to use the bathroom or clear my chest. I have to trade off the minimum time I need suctioning but clearing my chest with how desperate I need to use the facilities. Hardly glamorous I know but such is my life. If I get this wrong I could end up chesty in the hoist which I wanted to avoid in the first place or an embarrassing accident could occur. It's depressing when I get chesty near the end of nearly every month awaiting a tracheotomy change. When I hit the hay during these times I dread facing the next day and I'm counting down the days until the tracheotomy tube is changed.

Another literal balancing act is when I'm eating my meals I need my head forward to ease swallowing and if I over compensate my head will fall. If that happens I could potentially spill my drink so I need my mother to push it back up and the whole process continues on. It's very frustrating but I try staying positive to keep my sanity because it's really not worth it when there's plenty of other things needing attention. This life with DMD does give a unique perspective to all affected. My mother has to trade off my care needs with her needs of having a break. Yesterday three of my teeth were extracted and because my aftercare was uncertain she cancelled her night out as they can't administer painkillers. I have amazing parents willing to go the extra mile.

It certainly makes one think.

More 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/Buy-my-books/

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

Welcome to my blog!

Sunday, 6 March 2016

Wednesday, 2 March 2016

Wednesday, 10 February 2016

Sunday, 7 February 2016

Sunday, 31 January 2016

Wednesday, 27 January 2016

Thursday, 7 January 2016