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  • Writer's pictureRuss Newton

Update on frustration with not being able to speak. A solution presents itself.

So I have written on this blog several times my frustration over not being able to speak. I receive a reply from one of the nine people I messaged about the calls I was getting from the UW even though my chart is marked plainly in many different spots that I can't speak. Suddenly the solution appeared in my mind! Take my phone number off of my account. Then they would have to drop themselves to my level and mail me or email me if they wished to communicate with me. Duho! I wasn't thinking about this correctly. I will not now ever give my phone number for anything anymore.


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Russ Newton
Russ Newton
Nov 04, 2021

Vivian, I have a Triolgy eye game Device I can speak with using my eyes. But I don't like it and don't use it. I have an app on my IPAD I use though not too often as my cell phone is easier to use. Russ

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Vivian Weber
Vivian Weber
Nov 03, 2021

Russ, has no medical professional suggestion a communication device that speaks the message you type? I suspect you are a capable typist, and it would seem much easier than typing a message on a small phone. Just thinking out loud.

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Vivian Weber
Vivian Weber
Nov 03, 2021
Replying to

I certainly understand the reluctance to use those devices, especially when you have to access them on a small phone. But it might be worth checking out some other assistive technology devices. The field has come a long way, and working with a larger screen/keyboard might be helpful. My ex-husband Kirk had an entirely different type of ALS, but his modified devices gave him some form of communication as his body atrophied in on itself. It's all so sad, and one feels so helpless as a friend/acquaintance. Know that you cross my thoughts with a whispered prayer each day.

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