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Trouble with Tobii Dynavox

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friedgold1

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Joined
May 22, 2016
Messages
15
Reason
Loved one DX
Country
US
State
Tennessee
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!
 

lgelb

Forum Supporter
Moderator
Joined
Nov 5, 2009
Messages
7,331
Reason
Lost a loved one
Diagnosis
09/2009
Country
US
State
WA
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,
Laurie
 

friedgold1

Member
Joined
May 22, 2016
Messages
15
Reason
Loved one DX
Country
US
State
Tennessee
Yes, there have been changes. She sleeps more and tires more easily. Thank you for your suggestions.
 

HiBob

New member
Joined
Feb 9, 2017
Messages
9
Reason
PALS
Diagnosis
1/2017
Country
US
State
Michigan
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.
 

notBrad

Senior member
Joined
Feb 26, 2015
Messages
584
Reason
PALS
Diagnosis
04/2015
Country
US
State
OR
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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