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  • Writer's pictureRuss Newton

My current state of mind.

I will describe to you what the process of dying from ALS feels like from my perspective. It is a strange way to die for sure. I feel like a tiny part of me is being erased every day. First it was slightly hard to eat certain foods, then it was limited to soft foods, then to liquids only and then nothing. And it just seem to happen seamlessly. I can't remember the last thing I ate to be honest with you. I have tried a few times to eat something soft but then I choke and I can't breathe so there aren't any motivations to continue on trying. And talking. I could talk and communicate almost normally for a long time. Probable 18 months. Then I started to be able to talk only for a little while. Then I only a few friends could understand me. Then they couldn't understand me. I am just being erased every day. Now the big issue that looks like it is setting up shop is a twofer. I am losing mobility on my left side and I am

starting to pull a thick viscous fluid from my throat now. And there is not a rhyme or reason to it. Sometimes I can go all day and not be bother by it. Some days, like today, I can pull that fluid out of my throat eight times and counting today. And if I don't, I start to cough and then trigger not being able to breathe. So now I am feeling like I am getting pinned down to my house so I don't get too far away from the devices that I used to clear my throat. And the drooling is back, sort of. I have to have a rag in my mouth most of the time now. I am not drooling as bad as I was but it is accumulating in the sides of my mouth and is very irritating. I will speak with my doctor about that issue when I see him on February 4th, but I do not have great hopes he can do anything. And today for example, i went to the local grocery store to pick up a few items. I took a rag in just in case and I am so glad I did. Several times i felt overcome with salvia in my mouth and I would look around and if I was by myself, I would pull my mask down and suck on the rag. But the worse part of this is I cough all the time. And with Covid out there, I can't run up to everyone and explain no, this isn't Covid, I have ALS and it is making me cough. I am just getting tired.

What I am trying to say I don't know how much longer I can take this gradual elimination of Russ. I am not down about it, but if I am tied to those dam machines to keep on breathing, I don't see any joy in living. Right now I am focused on a small gathering I having at my house I called the pre wake party on February 11th. After that, I don't know what I have to look forward do other than this pitiless slide into death.

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