Best friend has ALS can hardly talk

[Tregar]

Good afternoon Everyone. I'm so glad this forum exists. It's so important to anyone with ALS, My close friend who I've been a caregiver for, has had ALS for many years. Some folks like him are progress slowly. He used to work for the ALS Foundation as a pharmacudical chemist and did some great work for the cause.

He is about to completly lose his speech and I really need to get him some eye recognition software.

What's the very best eye tracking devices out there.

 

[Nikki J]

Does he go to clinic? Ask them for a referral to their augmentative communication clinic. It really isn’t a one size fits all question anymore. If they don’t have one I think Jay Fischman clinic at Boston Childrens ( where Mass General refers us ) does some remote consults

 

[old dog]

I tried out a Tobii eye tracker device from the ALS loan closet and found it difficult to use. I will keep typing as long as I can even though I'm slow which makes it hard to keep up with a conversation. The Tobii is an amazing machine. If I had been able to talk with someone who knew how to operate it or had a handbook, I may have had more success with it.

I use a Chromebook with a free text to speech program to communicate.

 

[lgelb]

A lot of people use the Tobii software with a regular laptop. There are also apps for Android and iOS, and the Mac. If applicable, being able to use any muscle reliably would enable the use of an ability switch instead of eye gaze, or even a USB tongue/lip/chin mouse.

 

[old dog]

Thank you for the clarification. I had no idea the Tobii software was available without purchasing the complete computer setup.

 

[AlDowns]

I am using the TDSnap application on my iPad. That was shared with my by the local ALS Association. I think that license is about $700.
They also loaned me the I13 Dynavox setup to learn to use the eye gazze process. Yes, getting some support for that application would be phenomenal.

 

[Tregar]

Thanks for replying! My friend moved to Margarita island years ago and now he can't take planes anymore. He's all set up down there, except for medical care... so he's going to have to figure out whatever we get for him on his own and with his friends. He is American though, from Torrence, so at least he's a native english speaker and has lots of english speaking friends.

I think the Tobi looks good.

If anyone has any suggestions, please post. he's loosing his ability to speak kind of quick now - it was a long time coming for him as he's a slow developer, I guess 1 in 100 or something of ALS patients develop very slowly (compared to most folks), but it's still ALS...

 

[Jimi]

I'm using a surface pro 9 with the pceye ($1200) from Tobii. It includes their excellent tdcontrol software. I started out using the pceye with my surface pro 5, the same i5 cpu and 8gb ram as they use in the tobii i13. It worked ok, but performance was not smooth. The surface pro 9 with i7 and 16gb ram is so much better to use. For mounting bracket I bought the Tobii surface pro mount ($350). I then found some used Tobii connect it parts on eBay and bought a 7/8 aluminum pole and some U-bolts and attached everything to the cart my vent is on. I've been using eye gaze for six months and it is better than I thought it would be. I also mirror and control my phone with the vysor app

 

[RKeller]

Hello. I have ALS and my speech is getting worse by the week. Some words I can't even say anymore. I have been working with my ALS Clinic and team Gleason. They are wonderful. I worked with their speech therapist. I have the Tobii Dynavox. I think it's wonderful. Team Gleason walked me through it and then came out to set it up. They set it up on a bedside arm that it sits on. It can easily be switched from my bedside to my wheelchair. Best thing is what Medicare did not pay Team Gleason covered so I did not cost me anything. God bless