Your questions and tips (slow progressors)

[John Walker]

Noteworthy Characteristics

I’ve noticed some earmarks that I think are related to (my) Slow Progression.

1.) I have high and low energy days. They seem to happen in cycles, with each high and low consisting of several days. I attribute them to hormones, and until some R&D Lab disproves me I will continue with that belief. After all, we’re chemical factories and hormones affect the mix. Why “Slow Progressors” haven’t attracted more interest baffles me. I’d rather study something in slow motion when the window for effective study is typically 2 years. I say 2 years because that’s a requirement of many Drug and Treatment Trials. If you’ve had ALS for 2 or more years they don’t want to use you for a Lab Rat. I would think there would be a great value to find a relatively healthy group of survivors with ALS for more than 5 years. I say 5, because statistics I recall indicate 80% of ALS afflicted are gone by 5 years. I would give this group of survivors a battery of tests to map out their chemistry, biology and DNA, and compare it to Fast Progressors and non-afflicted population. Differences between the 3 groups would give Research a starting point.

2.) Besides energy, Other Cyclical Characteristics I’ve noted are:

A.) Saliva. Output goes up and down. This wasn’t so much cyclical as constant. Lately it’s been down. I take Glycopyrrolate, but that doesn’t explain the down cycle as I’ve taken it for months while the output was up.

B.) Coughing. This is mostly constant but I’m currently better with it.

C.) Speech. This follows Coughing to some degree, but I’ve noticed when I’m going to be talking and I know I’ll be talking, my speech is better. Specifically when I’m talking to my GP, or Dentist, Dog Club Meeting and Quarterly Virtually Meeting with the ALS Clinic. So if I am expecting to use my voice in an extended manner, it’s as though I’m saving up my motor neurons for that task. Consequently, I avoid talking while walking. Prior to an expected talking session, I’ll apply a hot wash cloth to my face to loosen up my facial muscles, mainly the mouth. Also, I’ll take a lemon cough drop to clear my throat. The cough drop can be surprisingly helpful. It desensitizes my throat muscles and I don’t cough as much. Also I articulate better.

D.) Walking. I have to use a rollator to get around. I can’t use only a cane. I’ve noticed there are days when I can barely lift my foot off the ground when walking, and there are days when I can practically prance. I was feeling so good at one point, I started googling “How to walk” so I could begin a regimen of exercises and routines. Then I began a downward cycle.

I feel like I’m on the cusp of getting better or worse. It’s maddening. I try to compare these cycles to my diet and emotional state. I study each food package for MSG to eliminate glutamates. My emotional state seems to have an effect. Normally I’m positive and upbeat and I try to avoid conflicts.

John Walker 5/16/25