question about communication

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wyattwyatt

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I have a good friend whose sister has ALS. She is getting to the point where she cannot speak or use her hands and I was hoping to get information on what sort of communcation devices are out there. Any info. on what kinds/costs/if there are places to rent this equipment etc....
I can't imagine not being able to express your thoughts as your world becomes so internalized, and I am sure there must be ways to help. thanks.
 

Citlalli

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I had just written about this privately to someone when I saw this post so here it goes...

There are many ways to communicate verbally. My husband invented a great system using a cap with a laser that points with a specially designed alphabet board. It was amazing, we even got him a special talking computer but he always preferred his system , once we got the hang of it we were able to have lengthy conversations and could go really fast. many times I realized that I had forgotten the fact that he could not talk. You only need a little practice and some neck control (not that much). It was wonderful for us, he couldnt speak through his mouth for the last 3 years of his life and the transition from talking orally to not being understood was really hard, like 6 months of not communicating, until this invention happened. But you dont have to go through that. We made instructions for the system but they are in spanish. I promise to work on translating it very soon as I feel it can be of much help to people here. If someone needs it faster please private message me.

We also has a lot of signals for all his needs. It began with words and sounds he could make, facial gestures, blinking (different ways meant different things etc). At the end 2 pages full of subtle things he would do with eyes , mouth nose etc. Only at the very end, the last month, when he was too weak to use the cap, we could still communicate verbally using the board selecting each row then each letter by blinking. So don't worry, you will not be incommunicated, it is just a matter of being flexible and creative.
 

paula-jane

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I completely agree. Sometimes my mum can use her dynavox and sometimes we can't get her finger to align with the switch. We often use the alphabet board and she moves her eye when we hit the correct letter. It doesn't take long to communicate that way. Lately, we have been using a series of eyebrow movement and eyeball movement, each meaning it's own thing. We catch on pretty quickly to what she is trying to tell us and now we have a whole new language with her... it's quite amazing. I also agree that the transition from speaking to not speaking is the hardest. There are several different types of communication devices available. I'm not sure about the US, but, we were able to rent our device through our ALS clinic.
 

Brentt

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The lazer pointer and a baseball cap or a pair of glasses is a great quick fix. Until you can find an ALS loaner closet to help provide a SGD (speach genterating devise).
You should find out if she has Medicare and if she can get all the benefits that come along with it. Parts A, B and D. This would be a big help with all of the costs.
SGD's can range from used prices of a couple of hundred dollars to wow. Check with the MNDA/ALS for all of their literature. They have good adds in some of these publications.
The fastest way to get on top of the many resourses available to her is through the nearest ALS clinic.
 

Citlalli

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Hi,

the advantage of the laser-board system over the computers is that even with word prediction it is a lot faster because one thing computers will never know how to do is read the context of a conversation. Andres never used the computer in conversations because once you type it the subject has changed.
 

helper

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Mar 3, 2006
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thats exactly why my mother in law didn't care for her computer to communicate..she was always behind in the conversation. We were going to set up the ball cap/laser pointer system for her because she could barely move the marker on the white board but she ended up like this in the last week of her life..she would just start writing a word and we knew what she meant...
When she still had some strrength in her arms but no voice (she was without a voice for about a year) she did something our daughter did when she was a baby...we would say 'love you ' to her and she'd tap her chest over her heart..my daughter was thrilled that granny did this whenever we would come or go...its was very touching because it was special with us all and it still gets my husband when our kids do that at the window when he's leaving for work or something. We just seem to find a way to communicate...
Jodie
 

Icanmanz

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That put a tear in my eye. What a sweet gesture! May your sweet MIL rest in peace, bless her. These Pals are such special people. God bless!

Irma
 

paula-jane

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Laser pointer sounds wonderful. My mum is not able to hold her head up these days. It is difficult for her to co ordinate her head movements.
 
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