Old 02-07-2019, 09:12 PM #1 (permalink)
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Default Trouble with Tobii Dynavox

My mother has ALS and is able to only move her eyes, with some minimal movement of her left hand. She has been using a Tobii Dynavox to communicate. It has never been easy for her, but she has made it work.

In the last few days, she has had more and more difficulty typing letters, such that at this point she is only typing gibberish. We have tried everything we can to ensure that the device is aligned with her eyes and calibrated and have still not been able to make things work. We don't think that it is a device problem.

Has anyone found that as the disease advances, they are no longer able to use the Dynavox? Could it be she is not able to move her eyes as she would like to type her thoughts? Could it be that her eyes are not aligning well enough to see well enough to type?

Has anyone had experience with this problem or have any suggestions? We don't know what to do.

Thank you!
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Old 02-07-2019, 09:22 PM #2 (permalink)
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Default Re: Trouble with Tobii Dynavox

Unfortunately, this does happen. The muscles can get weaker. The muscles around the eyes are spared for some PALS and not others. Also, has there been any change in her energy/sleep overall?

For now, you may want to try using a letter board (that you can add phrases to, of course), point to possibilities in sequence, and see if she can blink to express herself. I know a couple of sample boards have been posted here and there are others elsewhere.

Depending on which muscles are weak, she may be able to use a "twitch switch" with a tablet or phone.

Best,
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Old 02-07-2019, 09:40 PM #3 (permalink)
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Default Re: Trouble with Tobii Dynavox

Yes, there have been changes. She sleeps more and tires more easily. Thank you for your suggestions.
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Old 02-08-2019, 06:48 PM #4 (permalink)
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Default Re: Trouble with Tobii Dynavox

I have a very simple suggestion which may help. I know my fixation on my Tobii bounces all over when my eyes are dry. Not sure how cold and dry it is now in Tennessee, but up in northern Michigan, humidity in the house is very low this time of year.

Hope it is something as simple as some artificial tears, like Systane. I depend on my Tobii 24 hours a day and without it would be frustrating. Good luck.
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Old 02-08-2019, 08:03 PM #5 (permalink)
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Default Re: Trouble with Tobii Dynavox

Can she move her head at all? If so, there are android apps that track head movements I bought a cheap android tablet for backup.
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Old 02-10-2019, 09:13 AM #6 (permalink)
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Default Re: Trouble with Tobii Dynavox

Quote:
Originally Posted by notBrad View Post
Can she move her head at all? If so, there are android apps that track head movements I bought a cheap android tablet for backup.
Unfortunately, she cannot.
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Old 02-10-2019, 10:34 AM #7 (permalink)
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Default Re: Trouble with Tobii Dynavox

Try Dasher in mouse emulation mode.
There are some videos on the net that explain it well. Much easier for the eyes, as they don't have to walk around the screen so much.
Inference Group: Dasher Project: Home
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