From a Google search to a boxing gym: Jennifer Wexton's Parkinson's journey
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It started in her toes. A kind of rigid clenching, causing them to curl up at the end of the night right as Jennifer Wexton tried to sleep.
Wexton was new in Congress. It was 2019 and the Democrat from Virginia thought maybe her feet were just tired. She walked 20,000 steps a day around Capitol Hill, from her office in Longworth to the House chamber and back. She bought silicon toe dividers called "YogaToes" to relax them at night, prompting a ribbing from her teenage sons.
But nearly two years passed, and the clenching didn't stop. Instead it spread. Her fingers were next. Her handwriting started getting smaller, a bit messier, until finally Wexton caved: She searched her symptoms on Google.
"It came up as, 'This is a classic symptom of Parkinson's,'" Wexton said in a recent interview, recounting the late-night shock, and her husband's assurance that it couldn't be right.
As her doctors recently confirmed, it was.
Now Wexton, 54, is hoping to use her platform in Congress to raise awareness about Parkinson's disease - a progressive neurological movement disorder - and push legislation to broaden the search for a cure. She went public with her diagnosis in a video in April, ending speculation that had swirled in political circles as Wexton's speech changes became more noticeable. She speaks faster now. She moves more slowly.
But she said she is hoping that becoming a public advocate in Congress for the tens of thousands of Americans diagnosed with Parkinson's each year can help show that the disease doesn't have to define her, or anyone. While there is no cure, there is treatment, and she said she intends to continue serving in Congress as long as she can or as long as the voters in Virginia's 10th District will have her.
"I had the same misconceptions that most people do, that it's this terrible thing, that you'll be hunched over sitting in a wheelchair and you'll be a vegetable in no time," Wexton said. "But after I learned more about it, I thought, 'There's no reason I can't do this.'"
Wexton has spent almost the entirety of her career speaking in public, going from a Loudoun County, Va., prosecutor to a state senator and then through multiple high-octane campaigns for Congress, appearing in televised debates and on stages for stump speeches.
Now she was doing speech therapy four times a week.
When she speaks on the House floor or in committee or at an event these days, she is also thinking: Is she enunciating her Os? Is she moving her lips? Is she using facial expressions?
"I'm just trying to be myself, really. Trying to make myself shine through the Parkinson's, which is hard sometimes," Wexton said, "because it tries to rob you of who you are. It tries to rob you of your speech. It tries to rob you of your affect. It tries to rob you of your smile and your ability to run and jump and dance and things like that. But I'm trying to defy the Parkinson's as best I can."
She said it took roughly two years from the time she initially saw her primary care doctor to a more formal diagnosis. At first, she said, she held out hope it might not really be Parkinson's, believing she was too young, that it was for "old men" - although uncertainty about what else it could be wasn't any more comforting.
Rachel Dolhun, a neurology and lifestyle medicine physician specializing in Parkinson's at the Michael J. Fox Foundation, said that while risk for the disease increases with age, it is not uncommon for those who have it to begin experiencing symptoms in their 50s. In a less-common case, Fox, the actor, was diagnosed with early-onset Parkinson's at 29.
The disease affects nerve cells' ability to produce dopamine, a brain chemical important for basic movement and coordination. That deficit can cause tremors. It also can cause problems with balance, fine-motor skills, speaking, mood, memory, smell loss - "it's different for different people," Dolhun said.
Diagnoses can be tricky. While research on one biomarker is developing, there is no simple test for Parkinson's. Doctors must make a clinical diagnosis, Dolhun said, once they have enough of a complete picture to rule out other neurological conditions. "So the road to diagnosis can be a very long and winding path for a lot of people," Dolhun said.
In Wexton's case, for months after her initial doctor's visit, Wexton said it was trial and error with a number of medications to treat her symptoms. The first two did not work, leaving her with side effects that only seemed to make things worse, she said - and leaving her with doubt. Why weren't they helping? Was it really PD?
She was hesitant to talk about what was happening to her, to tell people it "might" be Parkinson's or seek out a support group, leaving her mostly alone in the experience aside from her family. "I didn't want to become active in the Parkinson's community only to find out that I didn't have it, right?" she said. "I didn't want to be outed, quite honestly. I didn't want to be out until I was ready to out myself."
Finally, in December, after a third Parkinson's medication had been working, she said her insurance approved a brain scan. When the results came back, her neurologist ruled out other conditions, bolstering a Parkinson's diagnosis - and finally leading Wexton to come to terms with it.
A couple of months ago, she picked up the phone and called a friend from the Virginia legislature, Del. Rip Sullivan (D-Fairfax). His wife had recently been diagnosed with Parkinson's, and Wexton, after nearly four years of keeping her experience mostly to herself, was restless to speak with someone who could relate.
"And I said, 'Of course,'" Beth Sullivan recalled in an interview when she learned Wexton, with whom she had been acquainted through her husband, wanted to connect. "Because quite honestly, when you get a diagnosis like this, you can talk to friends and family, but there is something innate and instantaneous in your ability to connect with someone else who has it. Our diseases may look very different, or rather our symptoms may look very different, but the disease itself is still the same beast."
Sullivan, 63, a nurse practitioner in cardiac surgery, started experiencing tremors in her left hand while opening Christmas presents in 2020. Eager to build a community among women who understood what each was going through, she started a support group - including women with demanding careers such as hers. "I needed desperately to meet somebody like me. I didn't need to see the 80-year-old guys who have it," Sullivan said.
She invited Wexton to join. After just one meeting over Zoom, Wexton said she made the decision to publicly reveal her diagnosis on World Parkinson's Day, April 11, with the group's support. "I don't know if I could have done it without their help," said Wexton, who has since logged Sullivan in her phone as Beth "PBFF" Sullivan - for "Parkinson's best friend forever." They text on bad days - when communicating isn't coming smoothly, or when she's moving and she feels underwater - and to share good days, the ones that just feel normal, Wexton said.
Rep. Gerald E. Connolly (D-Va.), a close friend of Wexton's and her neighbor in the Virginia congressional delegation, described Wexton's announcement as courageous - but said it was painful to hear. He had encouraged her to run for Congress while she was in the state Senate, was with her when she won her first primary election in 2018 and has watched her political rise since. "It's devastating someone so young, so vibrant, so talented would have this diagnosis," he said, but added he felt she would "prove she's up to this challenge" to beat back the symptoms with treatment.
Wexton said that while she has appreciated her colleagues' sympathy and support, she wants to project a message that she is doing fine. She has gotten to work on her mission to raise awareness, joining the Parkinson's caucus, signing onto the National Plan to End Parkinson's Act - a bill to create a national project to prevent and cure the disease - and recently introducing a resolution to make April Parkinson's awareness month.
Rep. Jen A. Kiggans (R-Va.) joined her in co-leading the resolution. She said it was "an easy decision" to sign on, considering as a geriatric nurse practitioner, she has worked with patients who have Parkinson's. She recently approached Wexton to ask how she was doing, noting that with the array of treatment and medications available, as she has seen with her own patients, "you can continue to do what you love to do."
"It really just requires a lot of motivation from the patient. I think Jennifer Wexton has that motivation, to continue to work and serve in government," Kiggans said, "and it was an honor to be asked to co-patron this resolution, not just for her but for my patients and all people who struggle and battle with Parkinson's disease."
Aside from speech therapy, Wexton said she will begin physical therapy this month, and has made lifestyle changes that she hopes can help slow the progression of the disease: one hour of rigorous exercise every day, a good night's sleep, a healthy diet. A former triathlon competitor, Wexton said it's been easy to make those commitments. She often starts the day on the Peloton, and said she is looping in more creative treatment plans.
"I have an appointment with a trainer tomorrow, actually," she said.
She couldn't fight Parkinson's any more literally: She was taking up boxing.
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