late stage alarm and sensor systems

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marslan

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Hi!

My dad has ALS and he is approaching the complete locked-in phase with very little motion left in his body. He has been using a simple button-press alarm which we place under his hand to call us into his room or alert us to his needs, but lately he has lost the ability to press the button, which is causing him a lot of stress. He is using the eye tracking system on his computer to communicate with us, but he still needs to let us know when he wants the computer on and over his face. His ventilator is programmed to beep and alert us if he is not breathing properly, so that is not an issue. Nevertheless, he doesn't feel safe/comfortable without having an alarm system he can control.

Do you have any recommendations for some sort of an extremely sensitive touch alarm or some sensor system that we can use? Maybe something we can place next to his head (he can still move his neck left-right) or something we can stick to his cheeks to detect the movement on his face? I am not sure what options are out there for this late stage.

Looking for recommendations. Thanks!
 

lgelb

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Yes, there are switch-operated alarms that you can place on his pillow or cheek. Google "pillow switch" and "cheek switch" or check a site like AbleNet.

Best,
Laurie
 

Donnaelan18

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We are well into this stage with no movement other than eyes . I either speak out the alphabet and he looks away when I get the letters, read off pre written requests from note cards that he looks away when I get the right one or I have pre set screens phrases set on his dynavox for him to easily look at without typing that helps.
 

Bass

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hello
Try to have a look at what Jimi did:

If he cannot move his head at all, maybe you can buy something like Vivo laptop mount (stand-v001L). Mount it to the bed and keep the laptop on all the time and use Tobii eye tracking system.

Good luck
 

jonico

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Sorry your Dad is having this challenge Marslan!

First, I'm very impressed with Jimi's set-up.

I, unfortunately, am far less tech savvy than Jimi. In our case, my wife only needed an alarm to wake me at night, since we were always with her during the day. She couldn't move anything except her eyes and was able to use the alarm app in the Communicator 5 software on her Tobii Dynavox to alert me. We had a stand that slid under her bed so we could place the device in front of her for the night. Not sure if your Dad has a Tobii or a different eye tracking device, but hopefully that functionality exists with what he uses. All the best...Jon
 

nona

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I have a wireless doorbell button that I kick with my toe. He could probably do the same with his head if you prop it up. I typed " sensitive door bell button" into Amazon and a bunch of options appeared. Try to get the biggest button possible and avoid the ones where the button is depressed or concave. Hm, I see some that might work better for me. Glad you brought this up!
 
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