Communication for Fully Paralyzed Patients

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Resalder

New member
Joined
Dec 23, 2019
Messages
4
Reason
CALS
Diagnosis
12/2019
Country
TR
State
TR
City
Karabaglar/Izmir
Hi. I don't know if i write to correct side of forum. But i have a question. Is there any way to communicate with fully paralyzed (including eye movement) ALS patient? Some patients suffer from this and i didn't hear a solution. Some on reddit talked about Neuronode but i don't know much about it. I know Stephen Hawking could but his devices was unique and expensive. So my question is mostly for average patient. What are your opinions? Is there any way?
 
do they have ANY movement that you can detect? Toe? Little finger? Anywhere? They have zero control of eyeballs and blink?
 
I don't know this patients personally. I saw them on Facebook groups. But i don't think there were any other movement because these patients were on late stage and they were using tracheostomy. Caregivers were asking after their patients lost or started to lose their controll of blink and eyebals.
 
I am so grateful for my Tobii Dynavox eye gaze computer. I have been using it for 5 years. I am completely paralyzed and it reads my eyes. It has all the functions of a laptop computer in a addition I am able to text, talk, take pictures, and talk on the phone. My speech therapist at my ALS Clinic filled out the forms to get me authorized for insurance coverage. Team Gleason is a tremendous foundation that helps people with ALS get eye gaze computers. I hope this helps! Praying that you can get a device!
 
Lgelb, thanks for that link. My wife is fully trached and vented, and has begun to lose the ability to blink. She can roll her eyes (eyeball) up and down to indicate yes/no or any binary we come up with, but she doesn’t seem to blink at all. It’s becoming even more difficult than I would have thought possible. I wonder if it isn’t painful in some way to lose the ability to blink. (I tried to replicate it but I really couldn’t last long.)
 
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