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