Kati’s Story: Ataxia and Computers

I first had an old clamshell iBook I got about 5 years ago off eBay for just £200. I bought it cos I liked the colours (typical woman … LOL!) I knew absolutely nothing about Macs at the time and just used it to check mail and chat in bed mainly!

I didn’t use it for a while as when I upgraded to broadband I was having severe problems getting online with it. At this time my ataxia symptoms had started in my legs (problems getting my balance on standing and getting one leg in front of the other) but I could still type and my desktop was a Windows PC.

After been moved into wheelchair adapted property I finally got around to getting my iBook back online after switching to Sky (a UK satellite provider) as AOL was driving me nuts!

By this time my ataxia was more obvious in my speech and fine motor co-ordination and I struggled to hit the right keys, I got a cheap and cheerful child’s big keys keyboard to use instead of the trying to type on the iBook keyboard and switched it between laptop and desktop, I originally had a Big Track Trackball which kinda looked like a giant fried egg!

At this point I realised I was going to have to start looking for other solutions as it was obvious by this stage that the ataxia was progressing despite been told it wouldn’t get any worse once they had stabilised my thyroxine levels. I have Late Onset Cerebellar Ataxia (started in my early thirties) caused by my my thyroid not working.

Ataxia affects your balance and ability to coordinate your muscles. It can affect just one muscle, one group of muscles (for example, just those used in speech) or multiple groups of muscles. In my case the legs, bladder, speech and fine-motor co-ordination are now all affected to differing degrees after seven years. It’s a really long story! [Ed: Kati has also detailed her story of Adapting to living with multiple disabilities for those who are interested]

I researched for months into stuff like word prediction programs, originally looking for programs for Windows. I couldn’t find anything that matched what I had in mind, so searched to see what they had on Mac for the iBook. I downloaded the free trial of TextExpander as a short term solution and then found KeyStrokes.

By this time I was searching specifically for a solution to meet both my current and possible future needs without having to keep changing computers and software as my disability worsened. I saw the video of the little girl on AssistiveWare site. My arm movements aren’t quite as pronounced as that yet but its a similar difficulty with controlling arms/hands to do finer movements, she was using a Joystick Plus and I figured if she could manage it I would be able to and it would allow for some progression.

By this time my Windows desktop was taking 15 mins to start up each time – my old iBook was faster with less than half the power. When my Windows desktop crashed and locked up again for the millionth time, I decided to throw caution to the wind and switch my desktop set up to Mac as well. I splashed out on an Intel iMac, Keystrokes and a Joystick Plus last August – my credit card is still recovering!

I got the shock of my life when it started up in a few seconds; I was just about to go make lunch for 15 mins! These new tools have made a huge difference to how easy it is for me to access the computer. I dont need the large keyboard on this one as the keys are spaced, though I am thinking of adding a keyguard at some point if I can find one for it. I would like to be able to keep using the keyboard for as long as possible.

I use the iMac daily as my main computer. On that computer I use the hardware keyboard and the Joystick Plus, combined with KeyStrokes’ prediction window and shortcuts for websites/emails/IMs. I have just one KeyStrokes panel of pre-stored sentences I use on the desktop for letter writing and filling in forms.

When I use the iBook I can’t manage the hardware keyboard as well so I use the on-screen keyboard with the Joystick Plus. My on-screen keyboards for this computer are more complex and include panels of pre-stored sentences/smileys to quickly add into chatrooms or IM, along with some different abbreviation-expansions of beginnings and ends of sentences for when I want to say something that I don’t already have saved as a sentence. I mainly use the iBook in evening just to chat if there’s something I want to watch on telly at same time. The iMac is in spare bedroom which is currently an office.

I like my Joystick Plus. Although it was very expensive it does a lot more than I realised at first and has turned out to be well worth the money for me. It came with a standard joystick, a T-bar attachment, and a softknob attachment which is currently on my powerchair, to help me steer it better. I am using the T-bar attachment on the Joystick Plus for now. It also has a keyguard so you can rest your arm on it which helps reduce intention tremor I get from ataxia.

The only button that’s difficult to get to is the one directly in front of the joystick that allows you to switch between up/down or left/right, but I got a free switch box with it so I just bought a Tash Buddy Button switch that can be used when I need it. Most of the time, though, I have the button connected to the left click switch. This lets me turn off KeyStrokes’ Dwellix if i need more time to line up on smaller targets, or I use right arm to hold the left click button down to drag or highlight whilst using left arm to ‘steer’ the mouse pointer.

I switched the left and right click buttons on the Joystick, so right click is nearest to me (using it left handed) on the few occasions I need that one.

I use iCal and Stickies now as memory aids more, as handwriting notes is getting more difficult; I used to spend half the time trying to remember where I had left the note! I only used Firefox before but I’m liking the new Safari and the ability to see websites in picture form to click on and select as obviously they are bigger and easier to hit than a small line in a sidebar.

In the future I hope to see an affordable eye gaze system that will work on Mac, just in case I need one! Failing that I would hope to be able to use an Headmouse Extreme on a Mac Modbook for portability, to mount on an electric wheelchair and use as a hands free communication aid with both Keystrokes and Proloquo on it.

I would like Typetalk software to be compatible in future, as at the moment its windows only and I would like to be able to use Typetalk to make calls on my mac without adding Windows to it, for when I couldn’t manage typing on my Minicom textphone. I can’t hear/speak well enough to use a normal telephone by voice.

I’d also like to see smiley emoticons in apple mail! – please take note any Apple persons reading this!

I’m quite creative when I can find the energy and enjoy the challenge of setting up my own communication panels using Proloquo and KeyStrokes. I couldn’t find this level of ability with Windows software. I think they are excellent programs as they offer some keyboards/panels to get you started while you learn the program but also give you the ability to completely design your own from scratch.

- Kati
[Ed: You can also read Kati's personal blog on the Living With Ataxia website.]