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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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12 Kommentare


joanne.nakai
03. Feb. 2022

Russ, I am so sorry to hear of your struggle. You have always been such a kind and thoughtful soul. You have touched so many lives. I am better having known you

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Russ Newton
Russ Newton
03. Feb. 2022
Antwort an

Joanne, Thank you for the kind word. Really appreciate that. Thank you.

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Julie
03. Feb. 2022

Russ, I think of you daily and keep you in my prayers! I so amazed with your courage and strength to address all the challenges put upon you by ALS. Keep you faith! Love you❤️

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Russ Newton
Russ Newton
03. Feb. 2022
Antwort an

Julie, I have faith but this burden is too much for me. Thankfully it has stopped for the most part but if this is what the future holds for me, no thank you. Russ.

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John Powers
John Powers
03. Feb. 2022

So sorry Russ. Thank you for sharing your journey and making me more aware of this terrible disease.

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Russ Newton
Russ Newton
03. Feb. 2022
Antwort an

Thank you John. Appreciate it. Russ

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Dre Thomas
Dre Thomas
01. Feb. 2022

Praying for you Russ.. I'm so sorry you're going through this. I read all your post to stay connected with you. Just know I have you in my thoughts always. Andre T.

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Russ Newton
Russ Newton
02. Feb. 2022
Antwort an

Dre,

Thank you so much. It must have worked (The praying) I have had a full non chocking on saliva day today. And wasn't able to pull any out today either! Cross your fingers and keep praying.


Russ

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zjohnsn2
01. Feb. 2022

Praying for you. So sorry you are going through this. I hope you know I read all your posts and look forward to them.

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Russ Newton
Russ Newton
01. Feb. 2022
Antwort an

Zach,


Thank you sir. But that is something you should be thinking about losing soon. I can't keep fighting this, I have made so many adjustments to how I move through life now, I am running out of options and it will end soon I fear. But don't feel bad, i am at peace with it and I am going to a better place. So don't worry about me, please. Russ

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