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  • Writer's pictureRuss Newton

My current limitations from ALS.

This may be a long post as difficult as it is for me to type, the number of symptoms is excessive.



  1. Can't Eat.

  2. Can't talk.

  3. Steady on my feet standing still otherwise I need a scooter to walk anywhere. And i really wobble when I move and lurch from support structure to support structure without my scooter which I forget sometimes and walk away from it. I then sit and get stiff and it is an adventure getting back to it.

  4. My left hand still moves but has about 2% strength and fails at everything after about 2 minutes of use.

  5. Right hand is better but only slightly. I would guess about 30% strength and movement is longer but does fail when used excessively.

  6. Biceps on the left are useless, on the right about 25%,

  7. I can push the plunger on my Jevity refueling about four times with my right hand before it fails. The I place the head of the plunger against the counter top and push it in with my body weight.

  8. Weight 190lbs. Okay but i am down a lot from my normal weight And I can't really afford to lose any more so I am putting 4 Oreos in my Jevity and Coffee and that results in giving me an extra 300 Calories.

  9. I shuffle or drag both feet now with walking and catch my toes on both feet behind my heels all the time. Thank god for the scooter keeping me upright.

  10. When in bed, I need to get in and fall on my left side so I can sleep in that position. I don't have the core strength to turn over in bed.

  11. I pull a lot of saliva out of my throat about six or eight times a day. It took me about ten days of experimenting to figure out the best way to get it out without gagging. But now I can slide the suctions wand down my throat without triggering the gag reflex about 90% of the time now. And it is thick nasty stuff too. The suction device really slows down and struggles to digest it.

  12. I am getting weird pains and muscles locking up in my upper neck in the back and have to work my head around for awhile to get it to stop and release.

  13. I can still bend over and pick stuff up off the floor but it is getting iffy as to when I will tip over and go to the floor and then will have to use a grabber (already ordered from Amazon) to pick stuff up. And this could go under its own heading but I am clumsy as shit and knock stuff over all the time. And pills on the floor are a big issue for me. I keep the lids on loose because it is too hard to open. But that means when I knock the container over pills go flying. So far, caregivers have been here and picked them up and I am working hard to keep them centered and close to the middle of the counter. But still I know I will do it again.

  14. I have been told by my; doctor that my bladder and bowels are not affected by ALS but something isn't right. I can be sitting down for hours and have no urge to urinate but then get up and if I don't get to the rest room quickly, I am changing my underwear.

  15. Last on gets its own heading. I was standing at the counter about to administer the medications and no other way to sugar coat this but just filled my pants up with feces. no warning, just came out. And let me tell you, that is a full on contact sport getting out of soiled clothes with all the limitations listed above and not ending up on your ass. And cleaning up was hard too. At least an hour.

And it took my an hour to write this out with one hand.


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Harriet Leffel
Harriet Leffel
May 05, 2022

What a hateful and cruel monster you are dealing with. Any part of it could bring you down.... and yet there you are fighting and standing up to it. It is amazing that you are sharing it with us....and thank you for that.

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Russ Newton
Russ Newton
May 05, 2022
Replying to

Harriet,


Thank you. My secret is this. When I sit in my chair and read or watch TV I don't have ALS. Only when I move do I have ALS. So i don't move very much!


Russ

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Julie
May 03, 2022

Russ, My heart hurts to hear of the trials and tribulations ALS inflicts upon you! I pray for your continued strength of spirit! Love you cousin ❤️

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Russ Newton
Russ Newton
May 03, 2022
Replying to

Julie, Thank you! Love you too! And not in any real pain either so this is more annoying then anything else. Russ

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Dre Thomas
Dre Thomas
May 02, 2022

Thoughts and prayers with you always. Thanks for letting us in.


Andre T.

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Russ Newton
Russ Newton
May 02, 2022
Replying to

Andre,


Thank you Dre. appreciate it.


Russ

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Deb Bragg
Deb Bragg
May 02, 2022

Russ, I’m glad your blog will remain because it is an important, meaningful documentation of the ALS hell and how you’re dealing with it. Your ability to problem solve & find ways to function may help someone, some day. You are in my prayers. Deb

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Russ Newton
Russ Newton
May 02, 2022
Replying to

Deb,


Many thanks to you. Really appreciated the kind words and the time we worked together. Wish we had gotten to know each other better then but better late then never. Russ

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zjohnsn2
May 02, 2022

Lauren and I pray for you every night. .

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Russ Newton
Russ Newton
May 02, 2022
Replying to

Zack,


thank you for that.


russ

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