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

11 comments:

  1. You are amazing!! I just love your attitude. Makes me think I am not so bad off. I have Bulbar Onset ALS. I cannot speak anymore. I use an iPAD to talk for me. Thanks for inspiring me. I also belong to Patients Like Me.
    Barbara Howell (snicketful@live.com)

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  2. Sarah,

    Congrats on teaching others about this great technology!! Keep up the good work!! Judy

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  3. Sarah, your dedication is so up lifting, i admire all you do, (John Charen MNDA forum)

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  4. Well done Sarah, as usual, despite what has happened to you, you make time available to those - like me - who are coming behind you. Your advert was a real shocker for me, but it also woke me up to what was ahead. That was very necessary for me as I was walking over the cliff with my eyes closed. I'm so grateful to you for that. You've made your life an open book and I like reading it.
    Thank You
    Roch

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  5. Dear Sarah,

    Thank you for a well-written and informative post about PC Eye. I wish I could see how it works as I can't quite imagine it, but more importantly I am glad it exists!

    You continue to inspire people all over the globe, including me.

    Wishing you all the best,

    Terri

    ReplyDelete
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  8. I have mytobii P10 and its garbage, its the 3rd, one.
    To add insult to injury, receive a nasty email from Tara president for North America. Should have gone with different company. I believe that I'm getting refurbished ones. The speakers on this latest one work when they want to
    Paul Albino

    ReplyDelete
    Replies
    1. Hi Paul,
      My name is Thomas Nordén and I work as the Marketing Manager at Tobii Technology AB in Sweden. The P10 has been one of our most popular speech generating devices so it makes me sad to hear that you've experienced so much problems with your unit(s).

      If you don't mind, please send me an e-mail and fill me in on the details.

      Best Regards,
      Thomas Nordén

      Delete
  9. I'm really sorry to hear that Paul. I've had excellent service from Tobii here in the UK and my PCEye is amazing. I hope that Tobii will address your problems soon.

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  10. I read your above article you have done great job.

    ReplyDelete