When I first started with Ataxia symptoms I didn’t know what Assistive Technology (AT) was. I had a windows desktop and used it for email and chatting and that was it. Broadband was just appearing but still at high prices like £30 a month and I was still on dial-up so couldn’t afford to stay on long.
I had an helper in early days who helped with things like getting to the bank and getting food shopping, I didn’t enjoy having an helper, as I have always been an independant person who likes my own space and I hated having to have a stranger in my home, doing things I wanted to be able to do myself. My flat wasnt adapted and couldnt be adapted and the kitchen and bathroom in particular were difficult and in some cases dangerous (trying to get in and out of the bath) to use from a wheelchair.
The Kitchen with worktops at wheelchair height and cut outs under sink and hob built into worktop also made it easier for me to make my own meals and I had more room to manouvre with my chair and rollator.
After I had sorted out my housing I next needed to sort out my computer, I had started getting shopping delivered at my other flat and was beginning to see the potential in how a computer could be a big help. First though I had access issues to resolve, I was struggling with the mouse and the keyboard, things were taking ages to type as had to be so careful not to hit wrong keys, and seemed to be spending more time back spacing and deleting than typing!
I saw ‘Big Keys’ keyboards and bigger mice/trackballs then read about word prediction software which I relaised would be a great help. At this time I had an old iBook I had got off ebay for £200 and whilst searching for word prediction software I came across Keystrokes for Mac. I much preferred the interface for this one than the windows equivalents so after reading more on the Mac OS and the new iMac’s which had keyboard with flatter spaced keys that windows computers I decided to take the plunge and switch to Mac completely.
This has definitely been one of my best ever buys, the whole package cost almost £1800 for the high spec iMac, the Joystick Plus, Keystrokes software and a keyguard for the keyboard which I got imported from the US. (plus a printer/scanner/copier combo as my old printer was parallel port connection and iMac only has USB/Firewire).
I had now got Sky TV fitted (UK Satellite) and with it I got Broadband internet. It was alot faster than dial up, plus the Mac was faster.. no longer did I have to turn computer on and go make lunch while it took 15 mins to update the antivirus and start up! Even now it starts under a minute and I set it to auto open Keystrokes, Mail and Firefox on start up (all last tabs open.. currently two firefox windows with 6-10 tabs per page).
Shopping was easier to do, I learnt to do online banking, no longer did I have to wait to see if my helper was gonna turn up that day. I researched and learnt lots about Ataxia and finally began to understand what it meant and the impact it was going to have on my life. It was more than a case of “been a bit wobbly on your feet'” as one doctor had told me!!
With all the hills around here and the stiles/swing gates there were some places my scooter couldn’t get through because it was too long. The nearest park to walk Inca has a swing gate. Taxi’s won’t take mobility scooters anymore cos of their size so my next piece of tech was a robust chair that could handle the hills and little park up the road. I got a Quantum Vibe chair cheap, it only has standard van seating but I’m not sat in it all day and wanted it basically as back up as I prefer my scooter.
The first time I went up hill in that it nearly took off at the top, it flew up, it had bigger batteries than I had in my older scooter at that time (34ah) I nicknamed it ‘Buzz Lightchair’ (as in Buzz lightyear.. zooming off to infinity and beyond!)
Its falling apart a bit now and as they arent made/shipped to UK anymore its really difficult and expensive to get parts for repairs which is a shame as its quite a robust little chair and has survived ‘off-road’ gravel and grassy paths it wasn’t originally built for! It doesn’t handle snow well though and have skidded into same wall twice and taken the lights out on the left side!
Still I’m glad someone thought to invent an ‘electric wheelchair! ‘ (and the scooter) as I can walk my dog myself, get around village, local supermarket, doctors… without having to wait for someone to come and take me there.
My next biggest issue was the ataxia affecting my speech more, my muscle tone fluctuates daily and throughout the day so depending on how tight or floppy or my muscles are it affects my ability to speak and get words out clearly when I can get any sounds out. I may be able to manage 1-2 words in a row for Inca’s commands (Inca sit etc) in the morning, later that day I could be struggling with getting any words out, or when they do come out they slur so a sentence of a few words just sounds like a series of sounds (kinda of what it sounds like for me trying to work out what others are saying). Even when I manage to get some words out clearly my speech muscles quickly tire and after short while of trying to speak I’m struggling to get words out and usually have to go have a lie down and rest.
I can sign but thats only useful if others around you sign too, and away from the university environment when I was surrounded by other deaf students, by stark contrast a village in Yorkshire has very few people who can sign fluently.
Once again Assistive Technology came to my rescue in the form of the Lightwriter SL40
I had originally asked to be assessed for a device called ‘say-it-sam’ which was basically a talking windows personal organiser, however the NHS guy who came to assess me didn’t feel it would be suitable and recommended the Lightwriter. We did try another slightly bigger compact device called Typespeak with a 5″ screen but it was still difficult and fiddly for spontaneous chat, the sales rep suggested the 12″ version instead but that was just like a windows tablet and I didn’t want to go back to windows, if it had had the Mac OS on it I might have gone with that one!
The Lightwriter was much easier for me to chat with and I eventually got funding and got my own. The iPhone was still relatively new at this point and only had qwerty keyboard in the portrait mode, I tried a friends and struggled to even type my name, Proloquo2go wasn’t out at that stage. If the iPhone was bit bigger and could talk I knew I would like something like that more compact. Think I’m just a bit ahead of my time sometimes!!
This year my ‘dream’ came a little closer to reality when the iPad was released.
I was disappointed it didnt have a phone feature as texting on Blackberry is a struggle and the Lightwriter doesn’t come out of sleep mode when someone texts you. (as i live alone and don’t have it on all day, this is a problem for me) people text me on Blackberry so it lights up/vibrates and I can reply on Lightwriter cos its easier to type from. but it be much easier to have just one! I also don’t necessarily have both on me when I go out.
I use my iPad for loads of stuff, I take notes on it when researching and can synch notes between Mac and iPad via ‘Simplenote’ app which is compatible with textexpander (abbreviation expansion app), this speeds up notetaking considerably. I use it to set reminders, make lists.
Games have been a good way to improve on my multi-touch skills using scrabble, lexulous, word search, sliding blocks games to perfect my dragging skills and I have seen an improvement in my targeting skills, I have just used finger/thumb in main menu’s instead of pogo stylus in weighted holder although it sometimes takes a few attempts.
Now if it was just a bit smaller (but not as small as iPhone) and had a case with built in speaker, to make it louder to use as communication aid and give me more to grip onto, a shoulder strap be nice too!
Is Steve Jobs telepathic and reading my mind.. lol!
uummm… wondering if I could manage a 5.6″ or 7″ screen to use as an ‘iPhone’!!!