Tuesday, November 28, 2023

ALS Update: I aspirate and I drop things

I will be updating my decline every month or so, towards the end of the month (here, my timing is prompted by a doctor's appointment the day after tomorrow).  I have the results of a test to discuss, something formerly rare but currently commonplace to discuss, and a couple of new things.  To get the usual concerns out of the way:  I have no new falls to report, I am still taking care of my basic needs, I still eat a large amount of food, and I am maintaining my raw strength, as far as I can tell, though my coordination is declining.

First off, I took a swallow test with a barium solution.  They found that I am getting some of what I swallow in my lungs.  It varied with the consistency of the mix (thinner is worse), volume (more is worse), and chin position (lower is worse).  The main risk is getting pneumonia.  I have been offered a gastric tube, but don't plan on getting one yet.  However, I am planning on taking other measures.  I have a medications that needs to be taken in a cup of water twice a day, so I gave that some thought.  I have a few cups that allow me to restrict the flow of the liquids into my mouth, and I'm using them to keep a limited flow (reducing the volume), with the added benefit I can keep my chin up while drinking.  I have a few cups like this everywhere I tend to drink.  They also detected degeneration in my C6-C7 spinal disk, but I'm not in pain and I'll be happy to live long enough that it becomes a problem.

I've been dropping things occasionally for years, a couple of time a year.  It might have been a plate of food or a book.  Now, I drop things a few times a day.  I take six pills in the evening, and more often than not I'll drop one of them while getting them out of the bottle.  I drop forks, game tokens, anything light and small.  I haven't been dropping heavier items, except once a glass mixing bowl full of brownie batter, shattering a lasagna pan under it (that was a bad morning), so I'm pretty sure this is coordination and not strength.

I drool heavily.  My neurologist in Illinois has prescribed a suppressant (atropine, a common ingredient in eye drops), where I am supposed to put one drop under my tongue. If I put two drops in, that will slow down my saliva to the point I can keep it in my mouth most of the time.  I use it when in class or on game days. I also wear a mask when cooking or baking, which send the drool down my neck nstead of dripping off my chin.

I have a pair of sandals with no heel strap, designed for beaches, waterparks, etc.  I like to wear them at home when I'm not planning on going out much.  Lately, this past week-end especially, I'm noticing that the lack of a heel strap means my foot will not always come down squarely on the heel, particularly when I'm walking a little sideways.  This has caused me to stumble (but not fall) a couple of times.  I might to get a pair with heel straps.

That's all I have for now.  Feel free to ask questions to get more details, if you want.

2 comments:

Gunlord500 said...

Pardon a random commenter for wandering in, but I'd just like to say I came across your critiques of *The Last Superstition* and greatly enjoyed them, and going through your blog, your posts generally. Please accept my condolences on your ALS diagnosis, but also my gladness that the decline does seem to be manageable.

One Brow said...

Gunlord500,

I went over you 2023 in review post. I wish I had your energy!

Thank you for the kinds words and kind wishes.