ALS researchers and doctors have listed numerous possible causes of ALS: heredity, age, gender, genetics, extreme athletics, smoking, environmental toxin exposure, military service, stress, impacts. There are probably others to add to the list.
Our son died in his sleep on October 29, 2021, from the ravages of ALS with his family and friends at his bedside a day before his 42nd birthday. He used to play ice hockey (hard impacts), run half-marathons (extreme athletics), lived through two stressful marriages and two subsequently stressful divorces, enjoyed a successful but stressful career as a salesman of medical devices and software, took lots of body-building products (toxic intake?), and was a type A person. Did one or more of these cause ALS?
What triggers ALS?
After watching our son suffer from the horrible disease, I can’t help but wonder what triggered it.
A fall during childhood (yes, he fell and hit his head a number of times)?
A defective or contaminated medicine he took? He used to take large amounts of bodybuilding supplements. Was there a contaminant in it or did one of the intended components trigger ALS?
A childhood disease that he had? For example, having chickenpox in early life triggers having shingles in later life. What about some other childhood disease that facilitates getting ALS in later life?
Smoking? He never smoked cigarettes, but we found out from one of his friends during his memorial service that he smoked an occasional cigar.
Alcohol? Yes, but he drank responsibly as far as I know. (His favorite drink was a “dirty martini.”)
Drug use? (I don’t think he ever used drugs, but he had taken prescription meds to keep himself awake and alert while on the road for work) Weed? (He used marijuana occasionally, but his second wife was a pothead who always “hot-boxed” their apartment with secondhand marijuana smoke.)
Ethnicity? (He was Jewish. Tay-Sachs disease attacks predominantly Ashkenazi Jews, plus some other groups).
Geography and foreign exposures: Jeremy traveled all over the world (Puerto Rico, Vietnam, Dominican Republic, most of Europe, Iceland, Argentina, Canada, Peru, Galapagos, Israel). Was he bitten by some bug? Did he catch a virus? Did he contact a dangerous plant?
Environment: Did he live near a chemical plant or contaminated property? Food chemicals? Plasticizers? (BPA and phthalates trigger unwanted biological responses). Many processed foods have many chemicals in them—was there one that triggered ALS? If BPA and phthalates were banned 100% tomorrow, would ALS stop appearing? Or was ALS triggered by having had two or more of the above-named things happen?
Familial ALS is genetic, so that group is easier to identify. We were given a ShowerBuddy chair from a family whose mother was one of five people in that family who had died from ALS. A lot of the research on ALS focuses on familial ALS because there are DNA markers.
Why have I encountered so many people outside of our ALS acquaintances who knew someone or had a relative who died of ALS? Is the percent of people who have contracted ALS increasing? What’s going on? What’s triggering this?
When someone is diagnosed with ALS, the medical questionnaires try to discern what factors may have triggered it, but the questionnaires are not extensive enough. It would be great if they were given to people who DON’T have ALS to try to find those whose whole extended families have no victims. Maybe the statisticians would find a small group that has never had ALS so they could investigate why not.
I’ve heard that sickle cell anemia victims can’t get malaria, so is there an illness out there that serendipitously immunizes people against ALS?
Parental origins of sporadic ALS
I posted this in the Facebook group “ALS & MND – Clusters, Causation & Cohorts” that I joined in late 2022:
I don’t have ALS, but my son did. This is a question
- for those who have sporadic ALS, and
- for those who have a child with sporadic ALS, and
- for those who have lost a child to sporadic ALS, like my wife and I did when our son was 42.
Was there some exposure in one or both of the parents’ pasts that affected or mutated the genetic material handed down to your child during conception and later triggered ALS?
My own past
When I was a child, my parents gave me a sealed plastic toy maze with a large drop of mercury in it. The object was to move the drop into the center of the maze. The plastic eventually broke, so I collected the mercury and played it in my hands. My father took a dime and rubbed it in the mercury until the dime became extremely slippery, and then I played with it.
I had chickenpox as a child. I don’t remember if I had the measles. Did chickenpox affect my genetic material? I had shingles much later in life. The chickenpox virus lodges in the body for the rest of your life, and may reactivate years later as shingles.
When I was of middle school age, or maybe it was high school age, the town we lived in used to drive a pickup truck through the neighborhood with a cannon-sized mosquito fogger mounted on the back of the truck. The fogger was manned by someone who aimed the cannon side to side while he sent huge clouds of chemicals to every tree on both sides of the road. My brother and sister and I used to run and play in the fog because it smelled nice and was fun to play hide-and-seek.
I majored in chemistry in college (1966–1970), so I was exposed to all sorts of things without protection. Safety, except eye protection, wasn’t much of a concern back then. In graduate school in the early to late ’70s, I routinely used benzene and other nasty chemicals with little or no protection, and I obviously smelled these chemicals.
I worked in organic chemical laboratories well before our son was conceived. Protection was poor to non-existent back then, so I was exposed to many chemicals.
I was in the US Army from 1971 to 1973 (a draftee). I never went overseas. Was my genetic material damaged or mutated by some exposure while I was in the army? I know that veterans have at least twice the chance of getting ALS, but no one knows why. So is there something in the military environment that soldiers are exposed to that lodges in their bodies, causes alterations or mutations, and then is passed on to their future children who get ALS?
My wife wasn’t in the military. We were married in 1973 soon after I was discharged, and our son was conceived 6 years later.
While I was in the army, I was exposed to an unclean environment. I had an upper respiratory infection during basic training (Fort Dix) and spent a few days in the base hospital. I was also thrown into close quarters with draftees from all over the US (and with whatever diseases they had). I had lots of vaccinations administered via an air compressor gun pushed up against my arm (no needles)—how clean was that equipment and the stuff they shot in?
I was exposed to fumes and combustion products from bullets and gunpowder from firing a Howitzer a few times. I worked in the Ballistic Research Laboratories doing organic chemistry at Aberdeen Proving Grounds and was exposed to azides (explosives), besides other things.
What about tetraethyllead? That was in gasoline way back in the day, and before it was banned, I’m sure I breathed it every time my parents and I got gas.
My wife’s past
My wife’s parents were dry cleaners. They, like probably all drycleaners at the time, used “perc” (short for perchloroethylene) as the dry-cleaning solvent. Their store reeked of it. She used to work in their store on weekends and summers for years well before we met, so she obviously inhaled the perc. When we began dating, I sometimes visited her in the store, obviously inhaling the fumes until she was finished working for the day.
My wife majored in bacteriology in college. Was there any exposure there?
Ronnye worked in some research labs with anti-cancer medicines when we first got married in 1973. She also was exposed to, and inhaled, a radioactive chemical in a different lab when it spilled. This was well before our son was conceived. The radioactivity quickly ended up in her thyroid. A Geiger counter against her throat proved that. She had to take iodide pills to help expel it from her system.
I’m sure there were plenty of other exposures (illnesses, bites, chemicals) we weren’t aware of and don’t remember. Was there something in my genetic material or my wife’s that was affected or mutated by this exposure? Did one of us pass something on while our son was being conceived?
Our son was the ONLY one of both my family and my wife’s family who had ALS.
I don’t know if anyone has collected info on correlation AND causation about this. Surveying for historical data to look for parental exposures would be a massive undertaking. Maybe intake questionnaires by doctors for their newly diagnosed ALS-patients should include parental exposures.
