Communication Devices (AAC) - Help

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jamie1234

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Loved one DX
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IL
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Chicago
Does anyone have recommendations for Communication/AAC devices for ALS patients? My Mom has ALS and I'm starting to look into them now. Do you know if Medicare covers the device your recommending? I just want to make sure that we prepare now so my Mom has what's needed down the road. Thanks! Jamie
 
Hi, Jamie ...

Medicare should cover at least part of the cost. Get your mom registered with the Muscular Dystrophy Assoc. and also the ALS Assoc.. MDA ("Jerry's Kids") also supports ALS patients. They are paying for all my clinic visits and paid the part of my DynaVox that the insurance (Medicare) didn't.

These speech gizmos are expensive. My DynaVox is $8,000+. MDA is a life-saver, as is ALSA. I have a lot of equipment on loan from ALSA.

Take care ...
 
TTY telephone for the speechless

Hi, all ... Just a suggestion for those whose speech is going or gone.

I got a loaner TTY telephone from ALSA and have it up and running now. I have really been concerned about what I would do if I had an emergency and had to call 911 for either myself or my husband. Even if they didn't think I was drunk and hang up on me, they would not be able to understand me.

The TTY is used by the deaf. The phone has a keyboard attached and a small horizontal screen to read what you're typing. It's normally a regular phone and simply plugs into a jack (and an electrical outlet), and you can use it like a regular phone. It's a nice looking little gadget, too.

To place or receive a TTY call, you just push a button and it switches over to text. You can dial your number, and then start typing when they pick up.

The other party has to have a TTY phone to receive and respond, but all 911 operators and cops and fire departments (I think) and most "official" places have them.

This takes such a huge load off my mind! It's really simple to use, and just to know that I can reach someone in an emergency is priceless. You can also attach it to a printer if you want a record of the conversation.

Take care, all.
 
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I'm doing research on the Tobii and the ERICA system for a report for my Writing for Technology class at school. This systems are really costly but they read your eye movements and can help you communicate even when your hands don't work anymore. Part of my research will hopefully help me find organizations that will help pay for the cost. Once I'm done, I'll post my essay on here in hopes that it can help someone.

My Dad has a dynavox but refused to use it. Soon I will go through my storage and post those types of items for sale on here... I just can't bring myself to do that while he is still alive unfortunately.

Sandy
 
My sister used a TTY phone, it was great. But we used it thru an operator, that way she could call me or anyone else she wanted to. Her typing was translated thru an operator, when you respond the operator typed it back to her. It worked great, just took a little longer to communicate but it was helpfull. You can get them as loaners.
 
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