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  • Writer's pictureRuss Newton

Frustration mounts!



people think because i can't talk, i don't have the mental ability to communicate at all. They think i have some kind of mental retardation and they talk to me like I'm a toddler. Or they talk to me like I'm deaf, i.e., they yell at me. Or they're just dicks.


I have just about reached the end of my rope on this matter. I keep getting phone calls from someone at the UW Hospital where I am being treated. They just called me again and I really tried to talk but I can't speak any word in a recognizable way . And what they said when they gave up, they would call me later. What fucking good will that do is what I wish I could have communicated. So I did the next best thing, I messaged all 9 people on my care team at the UW this message. I am still mute! Here is what I sent them.


I am mute and I keep receiving calls from someone at this number 608 440-6400 that wants me to answer some questions for Medicare. And they apparently don't have access to my files that are clearly marked with regards to my inability to speak. Even after this call where I grunted and wasn't understood they said they would call back latter. Please, use my chart to communicate any question you may have.


And by the way, I still have ALS people. I have already filled out the Medicare questions six times. What do they need me to do if for again. I really wish I was faking this whole disease thing but I am not. I have ALS. Really, I do.


Russ

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A very nice letter from a young man. Zach Johnson.

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2 Comments


kevin
Oct 26, 2021

Hey Russ, since this isn't going to get any better, I wonder if you can use some kind of "APP" to translate for you? I found this online (no idea if it'll work for you). https://apps.apple.com/us/app/talk-for-me-text-to-speech/id975096888#?platform=iphone and it looked as if there were other options as well.

And/or maybe get a friend to record a message that you can play back some how that will quickly explain the issue and give a solution for them to follow.

I can't imagine your frustration. Hang in there!

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Russ Newton
Russ Newton
Oct 26, 2021
Replying to

Kevin,

;

I do have an app on the phone I use to speak. But I don't bother with when stupid people from an institution that I go to many times in a year and have already communicated my status to over and over and over again insist on calling me. I lean into it and get silly comments like I will call you later. Like I am going to learn how to speak in the 24 hours. It actually gives me some kind of perverse pleasure at this point in my life.

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