[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.