In early 2014, Glynda McKinnon of Charlotte noticed that her partner David Scheuer seemed to be slurring his words, but he didn’t notice it.
By late summer, even he acknowledged that something wasn’t right.
In September, he was diagnosed with amyotrophic lateral sclerosi, or ALS. Despite leading an active, athletic lifestyle (Scheuer had been a nationally ranked downhill skier), he had contracted the disease that was often referred to as Lou Gehrig’s disease after the famous baseball player who contracted it in 1939.
Dr. Elijah Stommel, a neurologist at Dartmouth-Hitchcock Medical Center, was Scheuer’s doctor. Stommel mentioned to Scheuer some research into whether there is a connection between ALS and blue-green algae. The doctor has participated in a number of studies researching whether there is a link between the cyanobacteria released by blue-green algae and ALS.
This was a startling coincidence to Scheuer because he had owned a home for decades near Shelburne Bay in Shelburne, a spot where blue-green algae blooms in the water are a recurring problem. After Scheuer’s diagnosis, the ALS progressed quickly, McKinnon said.
“He had lost a lot of weight,” she said. “He was on a feeding tube. He didn’t want a feeding tube, but we ended up doing that. He couldn’t get enough nutrition through the feeding tube to sustain body weight. He was on oxygen and having a hard time breathing,” she said.
David Scheuer took advantage of Vermont’s Death with Dignity law and decided to end his life on Aug. 6, 2015.
“About 10 years ago, we were mapping out occurrences of ALS and found clustering around lakes that had lots of algal blooms,” said Stommel. One of the first places he noticed, and the place where much of his research has been focused, is Enfield, N.H., which is on Mascoma Lake. Mascoma Lake has a history of blue-green algal blooms.
Through his mapping studies, Stommel has found a correlation between lakes with more frequent occurrences of blue-green algae (or cyanobacteria) and higher incidences of ALS.
Stommel said that the incidence of sporadic ALS, or ALS which is not likely caused by genetics, “is approximately 10 to 25 times the expected rate for a town the size of Enfield.”
He said that across New England, researchers have continued to identify areas with statistically higher-than-expected incidences of ALS and researched whether these are areas where cyanobacteria blooms occur more frequently. They have found a higher incidence of ALS than would normally be expected near Lake Champlain in St. Albans and near Shelburne Bay.
“I haven’t studied Shelburne as closely as Mascoma Lake, but it does meet the criteria for an ALS cluster,” Stommel said.
He added that this is a work in progress and that the researchers can’t say that blue-green algae causes ALS, but there is a “strong association” between blue-green algae and ALS.
Another tragic possible association
In December of 2015, Jo McKay started noticing that her partner Jim Glabicky didn’t seem to be putting thoughts together as well as he usually did. He was very athletic and loved to cross-country and downhill ski. By March of 2016, he was still doing both, often on the same day, but he began to notice that he was running out of breath more than he’d ever had before.
Glabicky did a lot of landscaping work and he found that he was tripping over his own feet while mowing, McKay said.
McKay said that he told her that he must be getting old fast, but he was only 50. In the fall of 2016, he was diagnosed with ALS. He died on Aug. 22, 2017.
After Scheuer died, McKinnon began speaking out about the possibility that there was a connection between blue-green algae and ALS. She held a couple of events at All Souls Interfaith Gathering in Shelburne and McKay attended one of these events.
After the meeting, McKay told McKinnon that her partner Glabicky had been the landscaper for Sheuer’s home in Shelburne that he sold after he moved in with McKinnon.
McKinnon said that the home wasn’t right on the water of Shelburne Bay, but it was close to it. Close enough, McKay said, that Glabicky would jump in for a swim after work at least once a week.
McKay said although Glabicky spent a lot of time on and around the lake, that doesn’t mean that cyanobacteria caused his ALS.
“There are lots of people around the lake and they don’t get ALS,” she said.
McKay thinks that the research will eventually indicate that there is more than one factor that causes ALS, but she does think that cyanobacteria is “part of how he ended up with it.”
Many ongoing studies
Stommel said that he has worked on maybe a dozen studies looking into a link between cyanobacteria and ALS, some of which haven’t been published yet. He’s currently part of a study funded by a grant from the Centers for Disease Control looking at cyanobacteria on Shelburne Pond and another study funded by a grant from the Environmental Protection Agency (EPA) researching how algal blooms affect such things as communities, tourism, health and anxiety of people who spend substantial time on the water.
Rachel Gould, assistant professor in UVM’s Rubenstein School of Environmental and Natural Resources, is principal investigator on the EPA study of commercial and social impacts of algal blooms.
“Cyanobacteria are naturally-occurring, but the volume and prevalence has changed,” Gould said. “A hundred years ago, there were blooms, but nowhere near the concentration we’re seeing now.”
As a result, there have been hundreds of studies of cyanobacteria across the country and the study she is involved with “is a small subset” of the research.
Besides the sociological impacts, one thing the research is looking into is the impact of cyanobacteria on fish because fish feed on cyanobacteria. There are fewer fatty acids in cyanobacteria, so they are studying fish flesh to see if it has fewer essential fatty acids and how much toxin is present.
They have also set up air monitors on St. Albans Bay to see if they will find cyanobacteria is aerosolized by testing the filters.
Stommel said that researchers have noticed that ALS clusters appear to be more frequent on the eastern shores than on the western shores of waterbodies in New England, where the wind more frequently blows out of the southwest, Stommel said.
Part of the research he is working on involves autopsies to look at lung tissue to see if there is cyanobacteria and, if so, does it correlate to people who have symptoms of ALS.
Many possible environmental causes
Stommel is very interested in research done by Paul Cox in Jackson Hole, Wyo., who has been feeding monkeys BMAA, a particular blue-green algae neurotoxin.
“Paul Cox has fed monkeys the toxins for six months, and he’s been able to reproduce the changes in the brain that you see in ALS and Alzheimer’s,” said Stommel.
However, Stommel agrees that there are probably several causes for ALS.
Almost certainly 10 percent of ALS cases are pure genetics. The sporadic cases may be due to a predisposition to ALS and exposure to environmental influences that might include heavy metals, athleticism, military service (veterans of the First Gulf War have exhibited a much higher incidence of ALS), head trauma, smoking, diesel fumes and formaldehyde, he said.
He said it is unclear if the incidence of ALS is going up or if the ability to diagnose it has improved so it appears the numbers are going up.
“Of course, the environment has changed much since the 1900s with global warming and the increase in nitrogen and phosphorus from parking lots, from development, from septic systems and from fertilizer are increasing algal blooms,” Stommel said.
Bridget O’Brien, who is a radiological and toxicological analyst for the Vermont Department of Health, said that cyanobacteria is the more correct term than blue-green algae because the blooms aren’t algae, they are bacteria.
She said that the research has not yet shown a solid connection between ALS and cyanobacteria.
“At this time, there is no known linkage between the two,” O’Brien said. “There’s not a known cause for ALS. There has to be more research.”
However, she said that everybody should be concerned about cyanobacteria and not enter water where there is cyanobacteria.
“The biggest known hazard from cyanobacteria is from swallowing the water that has cyanobacteria,” O’Brien said.
If you realize that you have been swimming in water with cyanobacteria, rinse off as soon as possible. Monitor your dog closely if they swallow water that might have cyanobacteria, and if their behavior changes, get them to a veterinarian, she said.
Monitoring the lake
O’Brien said Lake Champlain is monitored by a great public-private partnership between the Department of Environmental Conservation and the Lake Champlain Committee. The Lake Champlain Committee recruits and trains volunteers who monitor the lake for cyanobacteria.
There are many toxins in cyanobacteria, some of which may not be harmful, but testing in a laboratory is the only way to know.
“Always assume that it’s toxic and stay away from it,” she said.
To find out more about cyanobacteria, visit www.healthvermont.gov/cyanobacteria. To check conditions in a specific area, follow the link for “How do I find out about cyanobacteria conditions near me?” and then the link for checking the cyanobacteria map.
Gylinda McKinnon said that the warning signs that are put up at swimming areas when there’s a high risk of encountering cyanobacteria might be insufficient.
“I wish they could be more forceful, that they would say it more,” McKinnon said. “I think there’s a lot of concern about real estate values and tourism if the word really was out.”
Despite all the unanswered questions, Stommel remains optimistic that a cure for ALS will be found within 10-15 years.
Walk to Defeat ALS
The Northern New England Chapter of the ALS Association holds the Vermont Walk to Defeat ALS on Saturday, Sept. 21: 9 a.m. Registration. 10 a.m. Walk begins. Barbecue follows. Oakledge Park, 1 Flynn Ave.
Register and/or volunteer: alsanne.org, Shawna Zechman, email@example.com.