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  • Writer's pictureRuss Newton

What it is like living with ALS.

Updated: Jul 23, 2021

The first observation is it is like being nibbled to death by ducks. Every day I lose some fraction of my ability to move through the world. I can overcome most of them, but it takes effort. Nothing ever gets better, it just gets progressively worse. I can't speak at all now. And eating is getting more and more difficult to handle. And I am noticing that my hands are starting to struggle in removing lids or opening child proof containers. And I have no idea about buttons because I wear t shirts now all the time. And my breathing, that is the one that troubles me the most. Though of course, it shouldn't be a surprise. 100% of all Bulbar On Set ALS patients suffocate to death. So breathing would be a factor in that. Anyways, the impression I am hoping to convey is that this is like reverse growing up. Instead of gaining new skills every day, I am losing skills every day never to return. I am not too upset about it normally though once in while I get in a dark place. But I am not there now! I have the Bucks game to look forward to tonight and I have two good friends coming over for dinner. Jim and Susan Pagel.

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Russ Newton
Russ Newton
Jul 08, 2021

I am trying hard to enjoy every last sip I can take out of this life!

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heblumer
heblumer
Jul 08, 2021

So hard to hear this Russ but you have the most positive attitude I've ever seen with this disease. Hard to hear ... I can't even imagine how hard to go through. Hang in there, and enjoy the life that you have left.

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