Michigan family has 7 Parkinson’s cases. Did weed killer play a role?

The crop duster pilots used to do barrel rolls over the southwest Michigan farm where Terri McGrath grew up.

As a young girl, she found them fantastic. She and her siblings and cousins would stand outside to watch the aerobatics as they executed spins above the fields of apples, grapes and currants.

“And I remember grandma would always yell, ‘Get in here, kids. That stuff’s probably not safe for you to breathe,’” McGrath said. “Little did we know.”

Among the pesticides and herbicides used on the family’s Michigan farm, she said, was a substance called paraquat, a brilliantly effective weed killer that is so toxic to humans that a splash can burn the skin and a sip can kill a grown man. Her grandfather kept the bottles on a high shelf in the barn where the children couldn’t reach them.

As a girl, McGrath heard a story about a local vegetable farmer who drank some down in a fit of despair. But she wouldn’t get hints of how low levels of exposure to paraquat might have harmed her, and many thousands of others, until she was in her late 40s.

For McGrath, the first inkling came at the Buchanan school where she worked. One day, the principal stopped her in the hallway and told her she was walking oddly.

“She said, ‘Terri, did you have a stroke or something?’” McGrath said. “I said no. She goes, ‘But you’re not swinging your arms.’”

Terri McGrath, 69, puts on her shoes at her home in St. Joseph, Mich. McGrath was diagnosed with Parkinson’s disease in her 40s.  Isaac Ritchey | iritchey@mlive.com

Which is how she came to find out she was the fifth person in her immediate family to develop Parkinson’s disease, a neurodegenerative condition that causes tremors, stiffness and balance problems. Two additional family members have been diagnosed in the 19 years since. Six of the seven had lived on the family’s two farms in the small community of Scottdale south of St. Joseph.

With evidence of its harms stacking up, paraquat has already been banned in dozens of countries all over the world, including the United Kingdom and China, where it’s made. Yet last year, its manufacturer Syngenta, a subsidiary of a company owned by the Chinese government, continued selling paraquat in the United States and other nations that haven’t banned it.

McGrath said she tried to get a class-action lawsuit going 15 years ago, “but I just ran into walls.”

“I’m really, really mad about this,” she said. “Europe had been testing this and saying it was bad for 20 years before we even thought about it here. They banned it over there.”

Meanwhile, Syngenta says that “despite decades of investigation and more than 1,200 epidemiological and laboratory studies of paraquat, no scientist or doctor has ever concluded in a peer-reviewed scientific analysis that paraquat causes Parkinson’s disease.”

“We have great sympathy for those suffering from the debilitating effects of Parkinson’s disease,” a Syngenta spokesperson said in a statement. “However, it is important to note that the scientific evidence simply does not support a causal link between paraquat and Parkinson’s disease, and that paraquat is safe when used as directed.”

With evidence of its harms stacking up, paraquat has already been banned in dozens of countries all over the world, including the United Kingdom and China, where it’s made. Ramsey Archibald | rarchibald@al.com

Parkinson’s disease

Parkinson’s results from the loss of nerve cells in an area of the brain that produces dopamine, a chemical that plays a crucial role in movement, memory and mood, among other things.

The difference in the way she moved might have been McGrath’s first sign, but it was changes in her ability to maintain focus that forced changes in her life.

McGrath taught kindergarten in the afternoons, and “I could mess up all I wanted when I was a kindergarten teacher,” she said. “We danced and all that fun stuff.”

But she also worked as a special education coordinator, a job that required her to keep multiple balls in the air. She began to notice herself slipping.

She retired three years after she was diagnosed.

“It’s the saddest thing, because now I’m as scattered as those sixth-grade kids with ADHD in my classroom,” she said. “I feel so awful that I tried to make them sit down and do the traditional sit-in-your-desks-and-work.”

Today the limitations of her movement make everything in her life take longer, she said.

“There’s so many little things that cause frustration,” McGrath said. “Getting dressed is a big one. I used to be a fashion queen. I love to dress up and go shopping and the whole bit. Now I go in and look for things that are three times my size, big and bulky, because I don’t want to get them stuck on my head, which I have done before.”

“It’s a stinking disease,” she said.

‘It makes you value today’

McGrath and her husband, Kevin, met as teenagers at Lake Michigan Catholic High School.

They went on one date. He got pulled over for speeding and was driving on a suspended license to boot. He tried to tell the policeman he was only driving because his date was drunk. She told the officer she certainly was not.

Kevin McGrath told the story laughing in the kitchen of their white brick house in St. Joseph.

That date was a bust, but they reconnected decades later and married in 2008. It was her second marriage and his first, and it happened as Terri was trying to figure out what her Parkinson’s diagnosis would mean. Her “discovery period,” Kevin called it.

“She’s been incredible,” he said. “She’s her own advocate, as far as doing the research and networking — which she’s so good at — and actually going out to help other people and volunteering time. She’s not just doing it for herself.”

Terri McGrath, 69, dances with husband Kevin at her home in Michigan. Isaac Ritchey | iritchey@mlive.com

The two of them still travel – a Caribbean cruise last year, Talladega Superspeedway in Alabama this fall. Terri’s bucket list includes a hot air balloon ride in New Mexico, one of the few states she hasn’t been to yet.

They still dance in the living room.

“The big thing that’s in her mind, that she said at the start, is ‘I don’t want to be the grandma in the corner that’s not smiling and scaring my grandkids,’” Kevin said. “I know that’s the root there, where she wants to be that happy person, that she’s remembered as that.”

But Parkinson’s has changed the way they make plans. The materials for a kitchen remodel are sitting in their garage. They’ve been there for a while. It’s not clear when Terri might need a wheelchair instead of the rolling walker she sometimes uses to get around.

Parkinson’s “changes everything. It makes you value today,” Kevin said. “That’s the biggest thing. And you don’t make a lot of really long-term plans”

‘I still have my voice’

Terri McGrath’s two keys to handling Parkinson’s are exercise and “finding someone who gets it,” other people who understand what it’s like to live with the disease.

She finds both at the exercise class she attends twice a week at the St. Joseph-Lincoln Senior Service Center.

“It’s very cool,” she said, “and it’s social.”

Walking into class on a Wednesday afternoon in October, she got a warm greeting from Sharon Comstock and lost her grip on her water bottle at the same time.

“Terri has been my mentor,” Comstock said.

Comstock grew up amid the same fruit farms south of St. Joseph where McGrath grew up and amid many of the same pesticides.

She met McGrath at a Parkinson’s awareness meeting in the spring of 2023. McGrath loaned her a book called “Ending Parkinson’s Disease” and later helped her to start sharing her story, to lobby elected officials, to speak up for other people with the disease.

“She reminds me that my voice matters,” Comstock said, “and that advocacy can be healing.”

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Parkinson’s is the fastest growing neurological disorder in the world, an epidemic in some researchers’ telling.

“We’re not loud enough,” McGrath said, “but I think that’s because, as a Parkinson’s patient, I can’t keep things organized in my head anymore. I can’t. I miss appointments and I go on the wrong days for appointments and all that stuff that used to be so easy.”

But that’s the nature of Parkinson’s. It’s not fatal, but takes away function, the ability to move easily, to think clearly. And it manifests in unexpected ways.

McGrath says she’d had days where everything she says comes out in rhyme, where glitches in her brain prevented her from moving her arms across the center line of her body.

But she doesn’t yet have the tremors that some people with Parkinson’s exhibit. It could all be worse.

“I’m really blessed. I still have my voice,” she said. “I still have most of my faculties with my brain.”

Exercise is one way to hold on a little longer. And so, in a room of other Parkinson’s patients, she holds onto an exercise chair, raises one leg then the other, stretches an exercise band, touches the floor.

She wobbles at times, but she’s there.