The Parkinson’s risk next door

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In April, my wife, Janis Hyland, called me with a story idea.

She was in Nassau, a small town in Rensselaer County just outside of Albany, where she grew up in a house that sits on the shores of a scenic body of water called Nassau Lake. Janis and her brother inherited their family home there a few years back and were getting it ready for sale.

Her idea involved a gathering in Nassau that she planned to attend. What might interest me, she thought, was that the meeting had been arranged a University of Rochester physician. The doctor, Ray Dorsey M.D., a neurologist and UR Medical Center researcher, was interested in hearing from Nassau residents who have Parkinson’s disease.

The fact that a meeting on the other side of the state was arranged by a Rochester doctor piqued my interest, but so did the meeting’s focus on Parkinson’s disease.

A neurological disorder

Parkinson’s is a progressive neurological disorder, a brain disease whose consequences are devastating. Its first noticeable symptoms are movement problems—tremors, slowness and twitching—that progress to the point where sufferers have trouble dressing themselves, bathing and completing other daily tasks most of us take for granted.

As Dorsey points out in “Ending Parkinson’s Disease,” a book he and three colleagues published last year, the malady begins years before noticeable symptoms occur as nerve damage makes its way slowly through a sufferer’s body until it finally reaches the brain.

Classified as a movement disorder, full-blown Parkinson’s has many other, less-visible symptoms: urinary incontinence, slowed-down thought processes, and ultimately a form of dementia that makes it impossible for sufferers to care for themselves. Finally, it is fatal. It is a long, unpleasant way to die.

My friend, Ken Payment, died of the disease a few years ago. Over a decade or so, my wife and I had watched Ken, a longtime partner at Harter, Secrest & Emery, decline steadily. The disease forced him to give up his beloved law practice and made it increasingly difficult for him to perform daily tasks he once did without thinking. His wife, Jane Conrad, who is also an attorney, gave up her own practice to care for him. My wife and I also have a Nassau friend who is fighting a steadily progressing case of Parkinson’s. She finds it harder to speak, needs her husband to help her dress, and complains of feeling depressed.

The roots of a crusade

As a neurologist, Dorsey has long treated Parkinson’s. But he started to think deeply about the disease’s causes only four years ago when he took a sabbatical and used the time to delve into the work of Caroline Tanner M.D., a University of California San Francisco neurologist and researcher who has spent decades investigating the disease.

Says Dorsey: “I started reading a ton of her papers. Twenty years ago, Dr. Tanner outlined the risk factors that are fueling the rise of Parkinson’s. We’ve largely ignored her work. We’ve ignored her work to our peril. One in 10 people over 65 today (in) the United States have either Parkinson’s disease or Alzheimer’s disease.”

One of Tanner’s main theses is that a significant cause of Parkinson’s is nerve damage caused or greatly exacerbated by chemical pollution. Once Dorsey began to follow that thread, he became horrified by the degree to which harmful chemicals pervade our environment and how little is being done about it. While he concentrates on Parkinson’s, Dorsey says, chemical pollution also plays a role in other ills like cancer and liver disease.

“I assumed that the water I drank was safe. I assumed the food I ate was free of harmful chemicals. I assumed that the air I breathed was safe. I no longer think any of that.”

Ray Dorsey

Now, Dorsey wants to launch a crusade.

Unlike crusades that spur fundraising marches and galas to “end” diseases like breast cancer, he does not seek a cure for Parkinson’s. Dorsey’s goal is both more modest and yet more ambitious: to halt an alarming rise in new cases that, he believes, is largely due to the pervasive presence of substances known by acronyms like PCB, PFOA and TCE. These substances, Dorsey says, are far more prevalent in our food, water, homes and backyards than most Americans suspect.

Ray Dorsey

Pollution alone does not cause Parkinson’s, Dorsey concedes in his book. Some people are exposed heavily to chemical pollutants and don’t develop Parkinson’s; younger Parkinson’s sufferers’ symptoms seem to be more triggered by inherited factors.

Still, says Dorsey, research he did for “Ending Parkinson’s Disease” convinced him that contamination by industrial chemicals is a main driver—and perhaps the main driver—of a spike in Parkinson’s that started relatively recently and is still picking up steam.

“Before I wrote the book,” says Dorsey, “I assumed that the water I drank was safe. I assumed the food I ate was free of harmful chemicals. I assumed that the air I breathed was safe. I no longer think any of that.”

The fastest-growing brain disease

Parkinson’s used to be relatively rare and until not that long ago actually was on the wane. In 1961, Dorsey notes in his book, a pair of Harvard neurologists, David Poskanzer M.D. and Robert Schwab M.D., jointly predicted to colleagues at an American Neurological Association meeting that Parkinson’s would disappear as a major clinical category by 1980.

Their prediction turned out to be off base by a longshot.

In 1976, Parkinson’s killed 1.6 Americans per 100,000; in 2017, it killed 8.6 Americans per 100,000. The rapid rise in the incidence of Parkinson’s is global. In 1990, there were 2.6 million cases worldwide. The number is expected to increase to 12.9 million by 2040. Now, says Dorsey, Parkinson’s is the world’s fastest-growing brain disease.

Individuals can take steps like eating a healthy diet and exercising to help ward off Parkinson’s. But given the prevalence of harmful chemicals in our environment, Dorsey sees a broader, societal effort—a crusade that would do for awareness of the dangers of chemical pollution what Mothers Against Drunk Driving did to change attitudes about drinking and driving—as a surer road to curbing the rise.

Actual cures for Parkinson’s and many other diseases are elusive and in fact rare to the point of non-existent, says Dorsey. No one has ever been cured of polio, he points out. But vaccines have wiped out the once-prevalent paralyzing disease. Only two people have ever been cured of AIDS, but millions have avoided the disease by a simple preventive measure of using condoms.

Similarly, says Dorsey, “Parkinson’s is to a large extent preventable. It’s well established that certain pesticides, including pesticides used in Upstate New York like Paraquat, are linked to the disease. Research done at the University of Rochester has established that if you provide Paraquat to laboratory animals, they develop Parkinson’s disease.”

Banned in the U.S. for household use, Paraquat is still allowed to be used commercially. The European Union banned it in 2007.

Whatever benefits Paraquat might have farmers or landscapers, says Dorsey, it is “the most toxic herbicide ever created. It kills the weeds that Roundup doesn’t. It’s been used to commit suicide. It increases the risk of Parkinson’s by 150 percent. China and 30 other countries have banned the chemical. The United States hasn’t. Use in the United States including in Upstate New York has doubled in the last five years.”

Nassau Lake

The meeting my wife attended in April was one of several stops on what Dorsey called a listening tour of heavily polluted Upstate New York communities.

Other stops on the five-town tour included Endicott, the home of IBM Corp. IBM was an economic mainstay that for many years buoyed the region, employing some 14,000. It also deposited many tons of a chemical called trichloroethylene in the area’s soil and water.

Known as TCE, trichloroethylene has been used widely in industry and domestically. It is used to clean metal parts in industrial settings and by dry cleaners. It used to be sold for home use as a spot remover. TCE is thought to be a significant cause of Parkinson’s.

Nassau Lake was created in the 1700s by landowner Jonathan Hoag who dammed Kinderhook Creek to flood a meadow and create a reservoir.. (Photo: Janis Hyland)

Nassau is a small town. It is home to some 4,700 souls, most of whom live in the town’s rural and semi-rural environs, which surround a village that is home to about 1,800 residents. It sits within 20 miles of the Hudson River.

A small community of modest homes lines Nassau Lake, a large pond created in the 1700s by a landowner named Jonathan Hoag who dammed Kinderhook Creek to flood a meadow and create a reservoir. Many homes that now line the lake’s shore are former cottages and fisherman’s shacks that were converted to year-around use. The people who live in them are mostly working class and solidly middle-class families.

My wife cherishes memories of growing up on Nassau Lake. She has regaled me with stories of the 1950s and ’60s when a clubhouse where dances were held used to stand within sight of her family’s home. There was a beach with a swimming platform. Everybody enjoyed boating and fishing.

My wife was surprised that some 20 people answered Dorsey’s call to meet with Parkinson’s sufferers. Considering the town’s size, she thought, it seemed like a lot. Her family’s former next-door neighbor was Sharon Hooper, whose story Janis first told me decades ago.

After Hooper and her husband moved to Rochester, her parents, who had purchased the home for Hooper and her newlywed husband, moved into the house on the lake. Hooper’s parents ate fish they caught in Nassau Lake almost daily.

When both her parents died of cancer, Hooper was suspicious. She started to ask questions. She had fish stored in her parents’ freezer tested. The fish turned out to have very high concentrations of PCBs.

Hooper’s questions eventually led to the uncovering of massive dumping of PCBs by Dewey Loeffel, a contractor hired by local industries including General Electric Co., Bendix Corp. and Schenectady Chemicals that had been disposing of hazard wastes in an area swamp for years. Some of Dewey Loeffel’s dumping was legal, some was not. Chemicals from the dump sites leached into Kinderhook Creek and collected in Nassau Lake.

Nassau Lake (Photo: Janis Hyland)

The Department of Environmental Conservation has relaxed its recommendation of never eating any fish caught in the lake to a one-fish-per-month advisory. Nevertheless, people generally throw back any fish they catch there. Party barges, row boats, canoes and kayaks still regularly ply the lake. Kids from a nearby summer camp used to water ski on the lake but no longer do. No one swims in Nassau Lake anymore.

Dorsey says he chose Nassau Lake as a stop on his listening tour because it is actually twice as polluted as Love Canal. But one of his main concerns was not with Nassau Lake’s well-publicized PCB problem, but with the area’s less-publicized TCE pollution.

In scouting Nassau-area hazardous waste sites, Dorsey recalls coming on “a nice little pond. There were kids on bicycles playing right next to it. That pond is a superfund site contaminated with TCE, which increases the risk of childhood leukemia and there’s a girl bicycling on her little bike with training wheels. Exposure to TCE causes a 500 percent increase in Parkinson’s risk.”

“You think: ‘I don’t live near a Superfund site,’ but you probably do. There’s no skull and crossbones. There’s no notification; there’s no fences. You could be living right next door to a Superfund site and have no idea.”

Ray Dorsey

Crisis-level problem

The Environmental Protection Agency’s Superfund program was created as part the Comprehensive Environmental Response, Compensation, and Liability Act, legislation passed by Congress in 1980 in response to revelations of industrial pollution in sites like Love Canal. CERCLA created a $1.6 billion trust fund to finance the identification and cleanup of hazardous waste sites.

Superfund sites are common. EPA maps show them to cover large areas of the United States, especially in heavily industrialized eastern states like New York. The agency also has maps that list hazardous waste sites in localities like Monroe County.

Despite the availability of such information to those who know where and how to look, Dorsey believes, few are aware of just how polluted their town, city or rural area might be.

“You think: ‘I don’t live near a Superfund site,’ but you probably do,” he says. “There’s no skull and crossbones. There’s no notification; there’s no fences. You could be living right next door to a Superfund site and have no idea.

“There are contaminated sites in Brighton; there are contaminated sites in Victor; there are contaminated sites in virtually every part of Monroe County. So, if you think you’re avoiding this by living in the suburbs, you’re sorely mistaken.”

Dorsey notes that his own Ontario County home sits minutes from a Superfund site. And despite the impressive size of the Superfund’s pot of cleanup money, he sees the U.S. hazardous waste cleanup record as mixed at best.

“The EPA eliminated the use of a pesticide called chlorpyrifos widely used on golf courses,” Dorsey says. “Robin Williams grew up on a golf course and he developed acute Lewy body disease, a Parkinson’s-related condition. There are studies indicating that people who live downwind of a golf course have a higher incidence of Parkinson’s. The EPA banned that pesticide a year ago. But they’ve reauthorized the use of Paraquat, which increases the risk of Parkinson’s 150 percent.

Adds Dorsey: “China and 30 other countries have banned the chemical. The United States hasn’t. Use in the United States including in Upstate New York has doubled in the last five years. Those are the tradeoffs we’re making. Do you want to live in a world where you get Parkinson’s or do you want to live in a world where those chemicals are banned?”

In Nassau, decades of publicity and high public awareness of a serious pollution problem have focused attention on the problem and sparked a number of cleanup and containment efforts. Still, Town Supervisor David Fleming is underwhelmed.

“The town has been trying for literally decades to get a health study done related to the impacts of the Dewey Loeffel Site, and that really has not happened based on a number of excuses from different agencies,” Fleming told Earth Island Journal in an interview last year.

An effort to contain pollutants with a clay cap on the onetime wetland and now lifeless lagoon where Dewey Loeffel dumped chemicals decades ago, for example, proved ineffective, leaving the lagoon’s toxic brew to continue leaching into area water supplies.

In an article published earlier this month, the Guardian highlighted a recent study, conducted for the publication, which found that EPA tests of residues of toxic chemicals in water after filtration use a test that fails to find unsafe levels of pollutants. As a result, hazardous waste sites celebrated by the agency, politicians and polluters as clean and scrubbed still pose dangers, experts say.

Dorsey sees the answer to what he regards as an often-lackluster response to a crisis-level problem is public action. He dreams of seeing hordes of angry citizens demonstrating, agitating and lobbying for a more coordinated and effective response to what in some cases is not just cleanup of old toxic waste but ongoing pollution.

“Where’s the million-person march on Washington for Parkinson’s, for Alzheimer’s disease?” he asks, pointing to MADD’s success and the successes achieved by AIDS activists’ Silence = Death campaign.

In the meantime, he notes, in a recent ruling, the Supreme Court by a 6-3 vote curbed the EPA’s rulemaking authority.

The issue at hand: West Virginia’s challenge to EPA emission rules. By relying on its own experts and research to set air emission rules, the agency overstepped its bounds and should have instead acted only on specific guidelines laid down by Congress. It is a position critics of the ruling see as dubious given the frequency with which Congress’ ability to agree on major policy questions is often hampered by partisan gridlock. And while this decision specifically applies to climate change, many see it as setting a precedent that will generally hamper the EPA’s ability to fight pollution on many fronts.

“Today, the Court strips the Environmental Protection Agency of the power Congress gave it to respond to the most pressing environmental challenge of our time,” Justice Elena Kagan wrote in a dissent joined by Justices Sonia Sotomayor and Stephen Breyer. “Climate change’s causes and dangers are no longer subject to serious doubt. Modern science is ‘unequivocal that human influence’—in particular, the emission of greenhouse gases like carbon dioxide—has warmed the atmosphere, ocean and land.”

Time will tell whether the mass movement demanding a more effective response to hazardous waste sites will arise. In the meantime, 100 Americans die of Parkinson’s every day, a count that barring major change, Dorsey believes, will grow exponentially.

Will Astor is Rochester Beacon senior writer. The Beacon welcomes comments from readers who adhere to our comment policy including use of their full, real name.

7 thoughts on “The Parkinson’s risk next door

  1. I am not sure I am going to be able to find the words to express how grateful I am to see an article such as this EXISTS! I am 38 years old, personally not impacted by parkinson’s disease but this captured my FULL attention to this article!
    “Ending Parkinson’s Disease.” “Before I wrote the book, I assumed that the water I drank was safe,” said Dorsey. “I assumed the food I ate was free of harmful chemicals. I assumed that the air I breathed was safe. I no longer think any of that.”
    I have been trying to live, maintain, educate about the chemicals and toxins in our environment and how we are being impacted by this but it is like telling people about the boogey man. They can see the chemical, they can’t see that threat and that is the problem. It amazes me that far too many know nothing about our microbiome.
    If there is anything that I can do to be part of any mission, please find me!! I am ALL HANDS ON DECK!! I need to be part of this movement and mission for a better future. THIS IS IT!!!

  2. A very interesting and well written article. You may have seen the attorneys “commercials” regarding the Camp Lejeune water poisoning. That goes back to the eighties. Having spent some time there during my initial Marine Corps training, I fall into that category. While they advertise the opportunity for a significant payout for those affected, my concern is not hitting the jackpot with the finances, but rather being covered for any medical expenses. At age 76 I can feel some evidence of tremors. I received word today that our politicians on the Hill failed to pass the vote for the coverage. As usual the “discretionary” issue has been injected into the situation. That noted it was voted down. (for now) It never ceases to amaze me how insensitive the politician can be. The poisoning issue now becomes just another way for those (those who for the most part never served) political puranas to pad the payout with items for their interest. For them the veterans affected with this poisoning is just another vehicle to gain additional dollars that are over and above the need. I hope that the funding to cover the affected veterans will be realized. The illness has to be dealt with,… lets at the very least cover the medical cost. I certainly appreciate Dr. Ray Dorsey’s attention and dedication to the issue.

  3. This is interesting. My dad fought Parkinson’s for over 25 years. He was lucky enough to get involved in a drug test program at URMC shortly after his diagnosis that kept the disease in check for nearly 20 years. I was always suspicious that the drugs he took for all those years became toxic in his body and made the last 5 years that much worse.

    We always assumed this was hereditary, because his mother also suffered form Parkinson’s. Now I will go back and research chemical dumping along the Niagara River in the Black Rock/Riverside area of Buffalo where he grew up.

  4. Very informative article on a horrible disease. My closest friend, a year older than I, was diagnosed last fall just prior to his 71st birthday. He had been experiencing arm tremors and numbness on one side of his body. So far medication and therapy has kept him from incapacitation, but he knows the prognosis. The VA had him put in a claim due to his combat service in Vietnam, 1969-70. They also told him such claims are routinely approved in his situation due to the massive exposure to Agent Orange for those In Country at that time. Our soldiers continue to be exposed to such hazards as evidenced by the debate in Congress
    on “Burn Pits”. In our area we must remember that Kodak was the number one in the state for releasing carcinogens like methyl chloride, and of course General Electric and PCBs has long been an issue, especially in the Hudson River. I have two other friends, retired attorneys who have not been in the Military who have been dealing with this for several years now.
    I can only hope there will be more medical advances soon. The numbers just seem to be growing very fast.

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