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;

1. 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.
   
   
2. 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.

3. 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.

4. 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.

5. 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.

6. 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.

7. 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.

8. 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.

9. 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.

10. 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;

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

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;

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

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