Friday, 30 September 2011

Tobii Study Day, 29 September 2011

Here is the talk that I gave at the Tobii Study Day - The Eye Control Learning Curve

Hello, my name is Sarah Ezekiel, and this is my assistive technology journey.

I was diagnosed with motor neurone disease in April 2000, at the age of 34. Within one year, I had completely lost the use of my hands, and couldn't operate my computer anymore. My local computer centre gave me an on-screen keyboard, with a switch that I had to strap to my knee. The switch kept slipping and I gave up out of frustration. I spent almost four years without computer access.

In 2005, my MND Association visitor introduced me to Hector Minto. He showed me a laptop with the program ezkeys, and a chin switch. I was using that equipment until February this year. I'd been happy with ezkeys, but started getting terrible neck pain, from my chin switch. Now I'm using the Tobii PC Eye and I love it!

I don't know how I would cope without computer access now. I use it to shop, pay bills, and do my banking, online. I communicate with my children's school, my social worker, and care agencies, via email. I also use facebook and twitter to raise awareness of MND, and keep in contact with friends and family. I've created my own website and blog, which enables me to express myself and for people to understand MND.

The internet has helped me to connect with people too. I've had several photo shoots, artists paint me, appeared in an advert, raised funds and campaigned for MND awareness. I've also had several articles published, in various newspapers and magazines. My life is far more interesting, because of these interactions.

I no longer feel isolated and depressed about having MND. I can contact other MND sufferers through forums, such as Patients Like Me or the MND Association forum. I can also email my GP, hospice doctor and nurse, if I need any medical help. I feel much more positive about my life, which is important when you have a terminal illness. I hope that other people gather inspiration from the way I live my life, despite being severely disabled. I know that would be impossible without my computer.

I was skeptical about eyegaze technology at first. I didn't believe that I would be able to do everything that I could do with a switch. I was pleasantly surprised. I can actually do more with eyegaze, like access my bank account and edit my website. I had to ask my carers, or children, to help me with those things before. Using my PC Eye was tiring initially, and I struggled to hit targets. Now I can write so quickly, which is much less tiring at the end of the day. I'm also very accurate, even though I wear glasses. 

In conclusion, the Tobii PC Eye has vastly improved my quality of life. I had to wait over one year to get funding for this equipment. I am campaigning to make accessible technology available to everyone. I'm even getting environmental controls soon. I never wanted them before, but everything feels easier with eyegaze.

Thanks very much for listening.

Talking with my eyes!

Hector and I during Q&A