Voice Concerns

[JohnnyMags]

Could someone explain what you need to do eyegaze and how it works? Also what are the costs involved with it?
My wife has a very noticeable change to her voice although no pain swallowing or the other bulbar symptoms. Is there a chance she won't lose her voice or is it inevitable?

 

[TLARRI1]

My wife and I, reached out to ALS organization, and they set my wife up with a company that has Eye gaze technology equipment, and they came out to our house Tuesday of this week and set up the computer for the gaze technology and let her try it out and she did fantastic with it so at this point we have to notify my insurance company and they will do a 90 day trial and then if all works well, they will allow her to get the eye gaze equipment. My wife is still talking but real slurred speech so we went ahead and prepared to get this technology. I hope this helps.

 

[lgelb]

If your wife's voice is changing early on, Johnny, the likelihood is that she will lose it, though not everyone does.

Not everyone needs eye gaze even if they can no longer use their fingers or voice. There are special mice and most major devices support use if someone can use their head, chin, tongue, toes, a cheek muscle, etc.

But if she does, one place to start is iOS devices, which now have gradually-improving built-in eye tracking. Varied apps are also available to make a Mac or Windows computer or tablet eyegaze-aware. So the market is moving away from the bulky, expensive freestanding eye gaze devices and to the devices that PALS already know how to use, that can be mounted for use in a bed, wheelchair, recliner, etc.

 

[Nikki J]

Since you go to temple ask them if they have a place to refer you to. Mgh sends us to an augmented communication clinic. My sister went to one associated with Hopkins. As Laurie says eye gaze isn’t the answer for everyone and a speech therapist who specializes in this can guide you

 

[Bike Mike]

Nikki is right that Temple is a good place to start. Check in with the Speech Therapist there for advice. Eye gaze is only one of hundreds of options to support communication. Temple University supports a “loaning library” of various devices that people can try. These would be arranged through the ST. Here is a link to the communication loaning library:

https://techowlpa.org/

 

[JohnnyMags]

Again thank you all ... It sounds like my best bet is to talk to the people (especially the speech therapist) at Temple. Our next appointment at Temple is May 20th. Am I OK waiting until then or is this something I should be kick starting right away?
As for her current situation she is still suffering immensely from this constipation and not eating enough due to nausea and food not tasting good at all. It seems this is making things harder than they should be.

 

[Nikki J]

I would message your contact at temple. Were you given business cards or told who to contact with questions? At my clinic I have a primary nurse and I message her for most things. I do have contact information for pt so I message them directly. So go with the speech therapist if you have their info otherwise your contact. If you weren’t given one send a portal message. My doctor’s portal is monitored by the aforementioned nurse

 

[JohnnyMags]

Thank you Nikki are you saying I need to contact someone right away and not wait until May 20th?

 

[Nikki J]

I would. It may not be urgent but a lot can happen in 2 months. It may take a separate appointment - likely so. It is always best to stay ahead of needs and you said her voice was changing