[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

[John Walker]

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[John Walker]

I had speech problems in 2017. I started seeing a Neurologist in 2018 and it took her 2 years to conclude I had ALS. She appeared to me to be inexperienced. I was 65 when I was diagnosed. Later I’ve read somewhere the average time to diagnose is 2 years. I started biting my tongue frequently while eating in 2013, when I was 57. I think that was an early sign for me that I had ALS., I don’t think my Neurologist had an age bias towards me. After my confirming EMG she told me to get my Will in order. She was a real inspiration! NOT.

[John Walker]

I dropped Relyvrio about a week ago, right after they failed the 3rd trial. It was causing me gastric problems such as upset stomach, heartburn and every 3 or days an episode of explosive diarrhea. I could never go out in public and stayed near a toilet at home. I feel incredibly better. A;so I dropped Rilutek about the same time. I developed a chronic cough that persisted for several weeks. I thought it was a consequence of ALS. Three days later my coughing reduced like 90%. I still cough some during swallowing-eating. I attribute that to my Bulbar.

[John Walker]

I’ve been taking Rilutek and Relyvrio for 6 weeks now.  I can’t tell if it’s helping or not.  I tolerate it well.  I take loads of supplements that hopefully help slow down ALS.  I’ve was diagnosed 3 years ago.  It took 2 years to diagnose.  Bulbar sent me to the Neurologist.  Looking back, I think I’ve had ALS for about 10 years, when I would occasionally bite my tongue while eating. The latest windmill I’m tilting my lance towards is Mercury poisoning from amalgam comprising my dental fillings.  It’s hard to believe metal in my mouth that’s supposed be 50% Mercury isn’t toxic to the human body.  I worked at a coal fired power plant as a senior engineer and I led most testing that was done to comply with the EPA.  Most critical constituents were measured in parts per Million, PPM.  Mercury detection was done in parts per Billion, PPB. A University brought in a Lab trailer with strict protocols for testing. Filtered air and cleanliness were necessary and test personnel wore face masks because they said the Mercury in the fillings would skew the results.  I recently watched videos through HealingALS.org and became aware of the Mercury angle. The videos with PALS reversing ALS were inspiring.

Note from the Forum Moderator: There is no evidence that ALS is linked to dental fillings. Also, please note that the site HealingALS.org presents many unfounded, untested, and unproven treatments and theories regarding ALS to its followers. 

[John Walker]

How relentless ALS is.  I still expect to recover from this. Each time I note deterioration I get a little depressed.  That’s partly why I’ve become reclusive. I started withdrawing when I started losing my speech.  That’s typical with Bulbar/Dysarthria.  Now, 5 years later, I’m barely able to walk.  So if I go somewhere I think, “I was able to walk up that sidewalk. Now I need a cane/rollator.” These are mileposts that come to mind when I go out.  The enhanced emotion factor is more pronounced.  Sad or happy emotions on TV elicit an exaggerated same emotion in me.  I fight it.  I adopt a fairly positive attitude, but I’ve always been positive.  There are so many possible triggers/causes for ALS and none have been clinically tagged as a true cause.  There are so many unanswered questions, like why do heavier people weather ALS?  I put on 20 pounds fairly quick.  My clinicians say they don’t know why, but all agree they’ve observed this.  So nutrition in the gut tends to support a probiotic factor.  Why do military personnel have a higher 2X chance of developing ALS? Why do physically active people have a higher chance of ALS? Why do people with higher stress have a higher incidence of ALS?  These are just observations, not necessarily facts.  I was a Power Plant Engineer in charge of pollution equipment that I inspected probably 10 to 20 times a year.  I put on the Tyvek suit and full face filter.  I took a shower after I was done with inspections.  I was in charge of 9 Bi-annual EPA stacl particulate test.  So about 18 years of stress.  Failure to pass a Bi-annual test could have a max fine of $35,000/day since the last test.  About $25 Million. Physically the job required walking probably 10,000 to 20,000 steps a day and climbing several floors of stairs.  I loved the job, but it could be too much at times.  That doesn’t even cover my daily responsibilities. I’ve earned a nice retirement, but I won’t get to realize it.  So what happens when big Pharma gets a silver bullet?  How long before Joe Schmo gets to get treatment.  I was diagnosed almost 3 years ago. I estimate I’ve had it 9 years.  I quit taking Celebrex about then for my Osteoarthritis and I noticed I occasionally bit my tongue more shortly thereafter. Celebrex was getting a bad rap for cardio problems due to being an Nsaid.  It was taken to reduce arthritic inflammation.  And that’s one more thing, neuroinflammation seems to be the basis for ALS, Alzheimer’s, MS, Parkinsons, etc.  Nothing like being a concerned observer.

[John Walker]

I was diagnosed 2020 with ALS about 2 years after I started losing my speech in 2018.  It took my Neurologist 2 years to diagnose me.  As I recall I started biting my tongue in 2014.  I took that as early indication of losing muscle control, aka Bulbar. My legs are going next as I need a cane and rollator. I can still dress, shower and feed myself.

[John Walker]

Well put Diane! I relate to all your observations. It’s always nice to meet someone else that understands exactly how I feel.

[John Walker]

Your observation on your down days mirrors mine. I try to stay upbeat and distract myself with streaming TV. I try to find something I can binge. I broke down late last year and subscribed to Britbox. It seems I have an affinity that British Mystery genre as I’m about half British (Irish/English/Wales) per Ancestry.com. I’d like to get into “Silent Witness” starting with season 1. There are 28 seasons and with a commitment to see the show till it’s last episode, I might stretch out my tenure for 2 or 3 years.

Anyway I’ve noted that when I smile I feel a little better. I think that is supported by science relative to “feel good” hormones. I’ve also noticed with my “up and down” cycle, the emotion factor is affected too. My tears don’t flow as easily with sadness and happiness. I learned the smile principle over 50 years ago when I was a DJ in training. My mentor told me to smile because it would put a smile in mu voice. The audience would notice.

[John Walker]

I had a quarterly virtual meeting 2 days ago. I changed it to 6 month intervals, since not much has changed for me in 3 years. I feel like a skipping record (baby boomer expression) when I report in. I’ve put together a report on my condition and send it out before every virtual meeting. My ALS team appreciates it. I feel like I’ve lost my safety net, but they said in the interim I can email them with any question or concern.

[John Walker]

I just started mowing my yard this week. I did about 3 acres in less than 3 hours. I haven’t mowed since around Thanksgiving and now it’s almost May, so it’s been around 5+ months. I got on the mower, lifting one foot to the mower deck, grabbing a steering bar to steady myself, and stepped with the other foot to the deck. Once I got a reassuring balance, I stepped up to the main deck, grabbed the other steering bar and settled into the seat. The whole process of mounting the mower is detailed and time consuming. That is the world of ALS we live in. Us slow progressors have to take it one step at a time, making sure we don’t fall. A fall could be disastrous, as my left hip socket will attest. I fell on concrete a couple of years ago and severely bruised my left hip. It disturbs my sleep and I have to roll to to the other hip. I gauge my degree of ALS progress with my physical abilities. I’m able to get on my mower as well as I did 5 months ago. It feels reassuring, as much or more so as getting the same ALS-FRS score as the last one, 3 months ago. I do that consciously all the time, comparing my ability to step up, get up off my chair or couch, or stand without losing my balance. I’ve lost most of my sense of balance and use a rollator. I use my accompanying cane to move items on the floor or close doors. That’s the journey we’re on as we slowly deteriorate. We start out walking fine, then slower, then halting steps with a cane and then a rollator. For us, the process is slow and inherently dangerous ( at least for me) as we stubbornly reuse to accept the next assisting device. I guess my next will be a wheelchair. (In a few years.) When I get on that mower I’m normal again. My upper body is fairly normal so I can work the steering bars ok. I can still raise my feet high enough to work the brake (only used for parking) and the other foot to raise and lower the deck, hydraulically. This is the one chore from my past that I can still do the same. The mower runs slow or quick, can stop quickly and turn on dime. I imagine it’s like a motorized wheel chair on steroids. I put on headphones, dial up an audiobook and mow for hours. I can do my whole yard in a day, if I want to.

When we were married, my wife’s dowry included an Airedale Terrier (Sarah) and a Chevy Malibu. Sarah was the better half of the dowry. Rhonda had Sarah when she was a puppy and we love this breed. So much so, we’ve had this breed for nearly 50 years. About 40 years ago we heard about Agility Trials and thought we’d try it. Agility consists of a timed course with jumps, tunnels, A-Frames etc. We also started with a black Labrador we named Beda (Beta). She was our test dog for Agility Trials along with Sarah. Soon after that, we joined the local AKC dog club and got involved with Dog Shows and Agility Trials. Rhonda and I have been the President and Vice-President (interchangeably) over the past few years. I’ve been the President lately and that works out good. I organize the monthly meeting with agendas and I really work in the role of administrator. Rhonda leads the Agility Trials and organizes them. She has a strong passion for the sport and performs with our dogs. Lately, with ALS cramping my style, I’m still President (elected position) and work more virtually. I still talk at our meetings, sparingly (Bulbar) and Rhonda and the rest of the club fills in with discussion.