It started with her toes. They clenched before curling inward, especially when she lay in bed at night. Her gait worsened next, and strides morphed into shuffles that led to tripping on the uneven sidewalks flanking Capitol Hill. Then her hands succumbed, involuntarily balling into fists at random times. When the pandemic ushered in a world of screens and Zoom calls and virtual town halls, her voice began to change: wavering, fluttering, almost as if she were speaking with a lump in her throat. Words became stutters. Phrases repeated. I felt as though I was losing control of my body. As Jennifer Wexton describes the progression of her symptoms, from small signs to bigger problems, the initial emotion she felt barely four years ago comes crashing back: fear. “It was scary,” she says. “I felt as though I was losing control of my body.” Wexton is sitting in her office, just south of the Capitol. It’s late September, almost one year from the day the Democratic representative for Virginia’s 10th Congressional District announced she had progressive supranuclear palsy, a rare neurodegenerative disease. Affecting roughly 30,000 Americans, PSP attacks everyday functioning through the destruction of brain cells. It has no cure. Over time, Wexton’s symptoms have intensified. Her head droops constantly to the right, the result of a muscular spasm called dystonia. Her toes and hands contract when she doesn’t want them to. By her desk leans a walker, which the 56-year-old needs to get around. Then there’s Wexton’s voice, arguably a politician’s most valuable instrument. When we first met, I asked her how she was doing. She murmured an indistinct “Not great.” The rest of our conversation took place with the help of a text-to-speech tool running on her iPad. Trained on hours of recordings of her public speeches and congressional addresses, the tool replicates the way her voice used to sound, before the disorder robbed her of intelligible speech. Wexton is no less lucid than she was before her symptoms began. She offered paragraphs-long answers to my many questions—some typed in advance, others on the spot. She continues to work from the Capitol as much as possible, going to votes and floor proceedings, and also appears at events in her district. Her mind is still there, trapped in a body that continues to fail her. Such is the pernicious nature of PSP. “The limitations caused by this horrible disease have led to many changes in my physical abilities, my job, and my day-to-day life,” she says. Before she leaves Congress, Wexton and her staff have been working to pass legislation to treat brain diseases. In January, Wexton will retire from the House of Representatives, where she has served since 2019. Yet the manner in which she’s making her exit is atypical. Many diagnosed with PSP retreat from the world, pruning away what they once could do while preparing for what’s to come: On average, people with the disorder die seven years after the onset of symptoms. But Wexton has chosen to fight, using her platform to bring attention to the disease and working to pass legislation to fund potential new treatments for it and other brain disorders. She is trying to live as long as she can, as well as she can, while helping others traveling the same path—to channel the same tenacity, colleagues say, that has characterized her career in public service. “The best way out,” Wexton says, “is always through.” Wexton was elected to Congress in 2018. It wasn’t long after her swearing-in the next January that her toes began feeling strange. At first, she didn’t think much of it. Sure, the sensation was annoying, even a bit unsettling, but Wexton chalked it up to suddenly walking thousands of steps on the Capitol’s marble floors, every day, all while wearing uncomfortable shoes. Besides, she had a job to do. The first Democrat elected from her district in nearly 40 years, Wexton grew up in Bethesda, graduated from the University of Maryland, and earned her law degree from the College of William & Mary. She worked as a prosecutor in Loudoun County and, in private practice, served as a court-appointed guardian ad litem, representing abused and neglected children. In 2014, she was elected to the Virginia state Senate. In the General Assembly, Wexton sought to protect children by making it easier to prosecute online pedophiles, and also sponsored a bill requiring fingerprint-based background checks for childcare providers. She helped pass legislation making it easier for victims of revenge porn to sue their perpetrators—a measure heartily supported by the Republican majority. Other successful bills secured women’s right to breastfeed in public and improved access to reversal drugs for opioid overdoses. Wexton’s work on Capitol Hill has been similar: helping pass bipartisan legislation to increase funding for opioid-addiction research; criticizing the Chinese government for its poor track record on human rights; founding the Congressional Task Force on Digital Citizenship, a way to combat online disinformation as well as keep people—especially kids—safe from online scams and predators. “She’s always been focused on people who don’t have voices,” says Wexton’s sister, Suzanne Tosini. As Wexton’s toes continued to curl, she tried weaving folded bandannas between them at night, the better to sleep. Months passed with no relief. Stumped, she Googled “toe-clenching.” It was, she discovered, a common symptom of early-onset Parkinson’s disease, a neurodegenerative disorder affecting movement and mood that typically manifests in people in their sixties and older. Wexton was incredulous. I can’t have Parkinson’s, she thought. That’s a disease that old men get. Neurodegenerative diseases are very much like jigsaw puzzles. To make a diagnosis, doctors work to decipher signs and symptoms. Some fit together. Others don’t. Slowly, gradually, corners and sections emerge. Only in retrospect, when the full picture is complete, does it make sense why certain pieces connect. Wexton saw a series of doctors. There were exams, tests, prescriptions for different medications. Eventually, she was diagnosed with Parkinson’s. She announced that publicly, in a prerecorded video message, on April 11, 2023, World Parkinson’s Day. At roughly the same time that Wexton was running down the cause of her irregular movement, a doctor told me I have my own neurological disorder: type 1 myotonic dystrophy, a rare form of adult-onset muscular dystrophy with no cure and very limited treatments. For almost two years, I had been hit by a variety of seemingly inexplicable symptoms—early-­onset cataracts, musculoskeletal pain, difficulty swallowing food, incredible fatigue in the middle of the day, and weakening of the muscles in my hands and arms. In a way, I felt relieved when I finally understood why all this was happening to me. When Wexton and I met, we shook hands. Both our sets of fingers, ever so slightly, snapped back toward our palms. That’s a symptom we share. When she talked about the ordeal of finding answers, I could only nod in agreement. “The many months, which turned into years, of the process to get a diagnosis was frustrating and, quite frankly, exhausting,” she said. Parkinson’s disease attacks brain cells that produce dopamine—a brain chemical typically released when you do something enjoyable, and important for mood, mindfulness, and movement. Lose too much dopamine and it becomes difficult to control your muscles. You develop tremors. Wexton was originally prescribed a medication that replaces missing dopamine—but after about six months, her response to the drug was no longer as robust as when she started taking it. Her symptoms intensified and spread, affecting her balance, the up-and-down movements of her eyes, the muscles in her neck, her voice. Doctors determined that Wexton actually had PSP Parkinsonism, a variant of PSP. Doing so wasn’t easy. My neurologist ordered a blood test to detect the mutated gene that causes my condition. By contrast, there is no clinically approved genetic marker, blood draw, or brain scan that says: Yep, this is PSP. Doctors must make a highly educated guess. “It takes anywhere between two and five years from the time that symptoms begin for someone to actually be diagnosed with PSP,” says Dr. Alex Pantelyat, director of the Johns Hopkins Atypical Parkinsonism Center and a leading specialist in PSP research and treatment. “And the hardest is PSP Parkinsonism because it starts out looking pretty much just like Parkinson’s disease, clinically. That was Congresswoman Wexton’s story.” Wexton calls her condition “Parkinson’s on steroids.” Pantelyat says PSP progresses more rapidly than Parkinson’s or Alzheimer’s. In broad terms, tau proteins—which normally help stabilize the internal skeleton of nerve cells—are abnormally accumulating in Wexton’s brainstem (which controls muscles involved in walking, balance, speech, and eye-­movement control, among other functions) and the frontal lobes (which house executive functions and language production). Doctors don’t know why the abnormal tau accumulation occurs, but they do know that it damages cells. Wexton first shared her new diagnosis with her husband, Andrew, her college-age sons, Matt and Jamie, and others in her family. She then approached her staff and colleagues—including Abby Carter, her chief of staff, who has worked with Wexton since her days in Virginia’s statehouse. When Wexton learned she had PSP, she first shared the news with her husband, Andrew, and sons Matt and Jamie. Carter remembers Wexton breaking the news during an evening meeting, sometime after 7. It wasn’t until midnight that Carter could bring herself to look up PSP. She mostly remembers reading about a severely shortened lifespan. “I was just shut down completely,” she says. “Because she’s going from being a vivacious, young person and now her life expectancy is staring at her in a couple years. “There were days I couldn’t even go to the office, because I knew it was happening,” Carter adds. “I couldn’t look at her, because I would just burst into tears.” During the summer of 2023, Wexton began using walking sticks to help with her balance. Her voice became hard to hear, especially in crowded spaces or on the phone. By that September, shortly before she revealed her PSP diagnosis publicly, she knew it was time to tell her best friends on the Hill: Abigail Spanberger, the Democratic representative for Virginia’s 7th Congressional District, and Jennifer McClellan, a Democrat representing the state’s 4th District. I couldn’t look at her, because I would just burst into tears. Spanberger and McClellan compare Wexton to a workplace big sister: assisting them with floor speeches and guiding them through difficult policy decisions. Wexton invited both to her office. “The fact that it was Abigail and me together, I knew it wasn’t good,” McClellan says. Knowing that Spanberger planned to run for Virginia governor in 2025, Wexton started by joking that she also intended to run. Then she explained her disease and what it meant. “She was clear and she was stoic and she was stone-faced,” Spanberger says. When Wexton later recounted this moment to me, she began to cry, just like she had cried after telling her friends. At the end of that meeting, she looked at Spanberger and told her she was determined to dance at her colleague’s gubernatorial inauguration. She then looked at McClellan—who lost Virginia’s Democratic gubernatorial primary in 2021 and could run again in the future—and somberly told her, “I don’t know if I’ll make it to yours.” “And then we just kind of sat there,” McClellan says. “Abigail and I hugged her, and we just sat there and held each other for a while.” Wexton went public with her diagnosis on September 18, 2023. To people trying to raise money for research into PSP treatments and possible cures, it was more than a brave gesture—it was putting a face on a disease that is often overlooked. “There are as many people with PSP as there are people with ALS [amyotrophic lateral sclerosis], and everybody knows about ALS and nobody knows about PSP,” says Kristophe Diaz, president of CurePSP. The nonprofit’s revenue was roughly $3.3 million in 2023. By contrast, organizations that focus primarily on Parkinson’s or Alzheimer’s annually raise tens to hundreds of millions of dollars. “Having a public figure actually decide to raise awareness is really courageous,” Diaz adds. “She basically said, ‘Hey, I’m not going to disappear. I’m just going to go all in.’ ” Wexton, with her director of operations, Madeline Gagne, is coping with a disease she calls “Parkinson’s on steroids.” Carter says Wexton “doesn’t really care about going viral. She just wants to help people.” She also had to help herself. As her condition deteriorated in late 2023, she traded her walking sticks for a walker. She began playing with various text-to-speech options. Losing her voice was especially hard. In conversations, she couldn’t share incisive ideas, germane comments, or witty asides. Her thoughts were increasingly trapped in her head. “She has very relevant and important and interesting things to say,” says her sister, Tosini. “It’s just hard not being able to say things, but also not being able to say things right in the moment.” McClellan found herself getting angry at other House members who mistook Wexton’s speech struggles for some sort of cognitive decline. Wexton says it was particularly frustrating to be spoken to as if she weren’t aware of who was talking to her—or what they were talking about. Even “some well-meaning colleagues,” she says, confused her “physical decline for a mental one” and spoke to her “like a child.” A text-to-speech tool on her tablet helps Wexton compensate for vocal impairment. Help came from an unexpected source. ElevenLabs, a startup that uses artificial intelligence to create audio models of people’s voices, reached out to Wexton’s office last spring with an offer: Send us old clips of your voice and we’ll create an audio model that sounds exactly like you. Wexton agreed. She calls the result a “scary-good replica of my voice,” and it is. It sounds like her, duplicating how she pronounces certain words and the speed at which she speaks. It even pauses for a breath between sentences. Wexton debuted the tool on the House floor last July, becoming the first member of Congress ever to use assistive voice technology in the chamber. “Now, if I could just get it to write speeches for me, I’d be all set,” she jokes. Still, even with the tool, Wexton tries to talk when she can. The essential mantra with PSP, she says, is simple: “Use it or lose it.” Living with PSP is a physical and emotional challenge—and, quite literally, an existential one. It’s also a logistical pain. Wexton’s week-to-week schedule is packed with rounds of occupational and physical therapy, exercises she needs to manage her symptoms. She gets quarterly Botox injections to assist with dystonia. She pops lots of pills. Driving herself anywhere is out of the question. So is wearing makeup, as she lacks the manual dexterity to apply it. What Carter calls Wexton’s “princess hair”—which is thick, full, and well past shoulder length—is tough to maintain. Wexton is unable to shampoo it, so now she receives regular blowouts. Yet while her daily life has changed, her approach to work hasn’t. Our interview was rescheduled several times, as public events and floor votes in the House conflicted with various dates we’d chosen. “People are astonished that, as difficult as her health journey has become, she is at every single vote,” Spanberger says. “I don’t know who else would have the type of health impacts that she’s faced and still do the job like she does the job.” In December 2023, the House passed the National Plan to End Parkinson’s Act, a bill Wexton cosponsored. Signed into law this past summer, it’s the first-ever federal legislation exclusively focused on Parkinson’s and other neurodegenerative diseases, with an emphasis on funding the development of better therapeutic drugs. Last spring, Wexton led a bipartisan resolution to recognize May as PSP Awareness Month. She has also sponsored the Healthy Brains Act, which would direct the National Institutes of Health to conduct research into the effect of environmental toxins on the development and progression of neurodegenerative diseases. If politics is hardball, then this is Wexton digging in for a final at-bat: A terminal illness may get me, but not before I swing for the fences. Surrounded by law-school housemates and sister-in-law Alison Lepard (far right), Wexton is determined to live as long as she can, as well as she can. “Just because I would be retiring didn’t mean I was going to step back,” she says. “I was going to lean in. I now had a deadline on the priorities I wanted to get done and the ways I wanted to shape my legacy, and I’ve been working very hard to achieve that.” Just because I would be retiring didn’t mean I was going to step back. None of this surprises the people who know Wexton best. Spanberger says her friend always faces problems “head-on.” McClellan calls Wexton “a fighter.” Pantelyat, the Johns Hopkins PSP specialist, says Wexton “just doesn’t stop. She’s relentless. She’s incredibly resilient. And she obviously doesn’t give up.” It would be easy, Wexton says, to dwell on the dark side of her disease—and in many moments, she has. But the one thing she can control “is how I approach the situation in front of me—which is finishing out this job, which I consider the honor of my life, on my terms.” As Wexton said this to me, I was reminded of a story she shared. The initial words she heard her AI talk-to-text program speak out loud were from Shakepeare’s Hamlet, the famous soliloquy in which the titular Danish prince weighs life and death. Should he weather the slings and arrows of existence? Or should he shuffle off this mortal coil? Wexton was with Andrew, her husband, as the opening lines echoed from her iPad: To be or not to be, that is the question. A broad smile appeared on Andrew’s face. Wexton began crying happy tears. It was the first time in months they had heard her voice, speaking in full sentences, and in that moment something became clear. Wexton would choose to be. It started with her toes. They clenched before curling inward, especially when she lay in bed at night. Her gait worsened next, and strides morphed into shuffles that led to tripping on the uneven sidewalks flanking Capitol Hill. Then her hands succumbed, involuntarily balling into fists at random times. When the pandemic ushered in a world of screens and Zoom calls and virtual town halls, her voice began to change: wavering, fluttering, almost as if she were speaking with a lump in her throat. Words became stutters. Phrases repeated. I felt as though I was losing control of my body. As Jennifer Wexton describes the progression of her symptoms, from small signs to bigger problems, the initial emotion she felt barely four years ago comes crashing back: fear. “It was scary,” she says. “I felt as though I was losing control of my body.” Wexton is sitting in her office, just south of the Capitol. It’s late September, almost one year from the day the Democratic representative for Virginia’s 10th Congressional District announced she had progressive supranuclear palsy, a rare neurodegenerative disease. Affecting roughly 30,000 Americans, PSP attacks everyday functioning through the destruction of brain cells. It has no cure. Over time, Wexton’s symptoms have intensified. Her head droops constantly to the right, the result of a muscular spasm called dystonia. Her toes and hands contract when she doesn’t want them to. By her desk leans a walker, which the 56-year-old needs to get around. Then there’s Wexton’s voice, arguably a politician’s most valuable instrument. When we first met, I asked her how she was doing. She murmured an indistinct “Not great.” The rest of our conversation took place with the help of a text-to-speech tool running on her iPad. Trained on hours of recordings of her public speeches and congressional addresses, the tool replicates the way her voice used to sound, before the disorder robbed her of intelligible speech. Wexton is no less lucid than she was before her symptoms began. She offered paragraphs-long answers to my many questions—some typed in advance, others on the spot. She continues to work from the Capitol as much as possible, going to votes and floor proceedings, and also appears at events in her district. Her mind is still there, trapped in a body that continues to fail her. Such is the pernicious nature of PSP. “The limitations caused by this horrible disease have led to many changes in my physical abilities, my job, and my day-to-day life,” she says. Before she leaves Congress, Wexton and her staff have been working to pass legislation to treat brain diseases. In January, Wexton will retire from the House of Representatives, where she has served since 2019. Yet the manner in which she’s making her exit is atypical. Many diagnosed with PSP retreat from the world, pruning away what they once could do while preparing for what’s to come: On average, people with the disorder die seven years after the onset of symptoms. But Wexton has chosen to fight, using her platform to bring attention to the disease and working to pass legislation to fund potential new treatments for it and other brain disorders. She is trying to live as long as she can, as well as she can, while helping others traveling the same path—to channel the same tenacity, colleagues say, that has characterized her career in public service. “The best way out,” Wexton says, “is always through.” Wexton was elected to Congress in 2018. It wasn’t long after her swearing-in the next January that her toes began feeling strange. At first, she didn’t think much of it. Sure, the sensation was annoying, even a bit unsettling, but Wexton chalked it up to suddenly walking thousands of steps on the Capitol’s marble floors, every day, all while wearing uncomfortable shoes. Besides, she had a job to do. The first Democrat elected from her district in nearly 40 years, Wexton grew up in Bethesda, graduated from the University of Maryland, and earned her law degree from the College of William & Mary. She worked as a prosecutor in Loudoun County and, in private practice, served as a court-appointed guardian ad litem, representing abused and neglected children. In 2014, she was elected to the Virginia state Senate. In the General Assembly, Wexton sought to protect children by making it easier to prosecute online pedophiles, and also sponsored a bill requiring fingerprint-based background checks for childcare providers. She helped pass legislation making it easier for victims of revenge porn to sue their perpetrators—a measure heartily supported by the Republican majority. Other successful bills secured women’s right to breastfeed in public and improved access to reversal drugs for opioid overdoses. Wexton’s work on Capitol Hill has been similar: helping pass bipartisan legislation to increase funding for opioid-addiction research; criticizing the Chinese government for its poor track record on human rights; founding the Congressional Task Force on Digital Citizenship, a way to combat online disinformation as well as keep people—especially kids—safe from online scams and predators. “She’s always been focused on people who don’t have voices,” says Wexton’s sister, Suzanne Tosini. As Wexton’s toes continued to curl, she tried weaving folded bandannas between them at night, the better to sleep. Months passed with no relief. Stumped, she Googled “toe-clenching.” It was, she discovered, a common symptom of early-onset Parkinson’s disease, a neurodegenerative disorder affecting movement and mood that typically manifests in people in their sixties and older. Wexton was incredulous. I can’t have Parkinson’s, she thought. That’s a disease that old men get. Neurodegenerative diseases are very much like jigsaw puzzles. To make a diagnosis, doctors work to decipher signs and symptoms. Some fit together. Others don’t. Slowly, gradually, corners and sections emerge. Only in retrospect, when the full picture is complete, does it make sense why certain pieces connect. Wexton saw a series of doctors. There were exams, tests, prescriptions for different medications. Eventually, she was diagnosed with Parkinson’s. She announced that publicly, in a prerecorded video message, on April 11, 2023, World Parkinson’s Day. At roughly the same time that Wexton was running down the cause of her irregular movement, a doctor told me I have my own neurological disorder: type 1 myotonic dystrophy, a rare form of adult-onset muscular dystrophy with no cure and very limited treatments. For almost two years, I had been hit by a variety of seemingly inexplicable symptoms—early-­onset cataracts, musculoskeletal pain, difficulty swallowing food, incredible fatigue in the middle of the day, and weakening of the muscles in my hands and arms. In a way, I felt relieved when I finally understood why all this was happening to me. When Wexton and I met, we shook hands. Both our sets of fingers, ever so slightly, snapped back toward our palms. That’s a symptom we share. When she talked about the ordeal of finding answers, I could only nod in agreement. “The many months, which turned into years, of the process to get a diagnosis was frustrating and, quite frankly, exhausting,” she said. Parkinson’s disease attacks brain cells that produce dopamine—a brain chemical typically released when you do something enjoyable, and important for mood, mindfulness, and movement. Lose too much dopamine and it becomes difficult to control your muscles. You develop tremors. Wexton was originally prescribed a medication that replaces missing dopamine—but after about six months, her response to the drug was no longer as robust as when she started taking it. Her symptoms intensified and spread, affecting her balance, the up-and-down movements of her eyes, the muscles in her neck, her voice. Doctors determined that Wexton actually had PSP Parkinsonism, a variant of PSP. Doing so wasn’t easy. My neurologist ordered a blood test to detect the mutated gene that causes my condition. By contrast, there is no clinically approved genetic marker, blood draw, or brain scan that says: Yep, this is PSP. Doctors must make a highly educated guess. “It takes anywhere between two and five years from the time that symptoms begin for someone to actually be diagnosed with PSP,” says Dr. Alex Pantelyat, director of the Johns Hopkins Atypical Parkinsonism Center and a leading specialist in PSP research and treatment. “And the hardest is PSP Parkinsonism because it starts out looking pretty much just like Parkinson’s disease, clinically. That was Congresswoman Wexton’s story.” Wexton calls her condition “Parkinson’s on steroids.” Pantelyat says PSP progresses more rapidly than Parkinson’s or Alzheimer’s. In broad terms, tau proteins—which normally help stabilize the internal skeleton of nerve cells—are abnormally accumulating in Wexton’s brainstem (which controls muscles involved in walking, balance, speech, and eye-­movement control, among other functions) and the frontal lobes (which house executive functions and language production). Doctors don’t know why the abnormal tau accumulation occurs, but they do know that it damages cells. Wexton first shared her new diagnosis with her husband, Andrew, her college-age sons, Matt and Jamie, and others in her family. She then approached her staff and colleagues—including Abby Carter, her chief of staff, who has worked with Wexton since her days in Virginia’s statehouse. When Wexton learned she had PSP, she first shared the news with her husband, Andrew, and sons Matt and Jamie. Carter remembers Wexton breaking the news during an evening meeting, sometime after 7. It wasn’t until midnight that Carter could bring herself to look up PSP. She mostly remembers reading about a severely shortened lifespan. “I was just shut down completely,” she says. “Because she’s going from being a vivacious, young person and now her life expectancy is staring at her in a couple years. “There were days I couldn’t even go to the office, because I knew it was happening,” Carter adds. “I couldn’t look at her, because I would just burst into tears.” During the summer of 2023, Wexton began using walking sticks to help with her balance. Her voice became hard to hear, especially in crowded spaces or on the phone. By that September, shortly before she revealed her PSP diagnosis publicly, she knew it was time to tell her best friends on the Hill: Abigail Spanberger, the Democratic representative for Virginia’s 7th Congressional District, and Jennifer McClellan, a Democrat representing the state’s 4th District. I couldn’t look at her, because I would just burst into tears. Spanberger and McClellan compare Wexton to a workplace big sister: assisting them with floor speeches and guiding them through difficult policy decisions. Wexton invited both to her office. “The fact that it was Abigail and me together, I knew it wasn’t good,” McClellan says. Knowing that Spanberger planned to run for Virginia governor in 2025, Wexton started by joking that she also intended to run. Then she explained her disease and what it meant. “She was clear and she was stoic and she was stone-faced,” Spanberger says. When Wexton later recounted this moment to me, she began to cry, just like she had cried after telling her friends. At the end of that meeting, she looked at Spanberger and told her she was determined to dance at her colleague’s gubernatorial inauguration. She then looked at McClellan—who lost Virginia’s Democratic gubernatorial primary in 2021 and could run again in the future—and somberly told her, “I don’t know if I’ll make it to yours.” “And then we just kind of sat there,” McClellan says. “Abigail and I hugged her, and we just sat there and held each other for a while.” Wexton went public with her diagnosis on September 18, 2023. To people trying to raise money for research into PSP treatments and possible cures, it was more than a brave gesture—it was putting a face on a disease that is often overlooked. “There are as many people with PSP as there are people with ALS [amyotrophic lateral sclerosis], and everybody knows about ALS and nobody knows about PSP,” says Kristophe Diaz, president of CurePSP. The nonprofit’s revenue was roughly $3.3 million in 2023. By contrast, organizations that focus primarily on Parkinson’s or Alzheimer’s annually raise tens to hundreds of millions of dollars. “Having a public figure actually decide to raise awareness is really courageous,” Diaz adds. “She basically said, ‘Hey, I’m not going to disappear. I’m just going to go all in.’ ” Wexton, with her director of operations, Madeline Gagne, is coping with a disease she calls “Parkinson’s on steroids.” Carter says Wexton “doesn’t really care about going viral. She just wants to help people.” She also had to help herself. As her condition deteriorated in late 2023, she traded her walking sticks for a walker. She began playing with various text-to-speech options. Losing her voice was especially hard. In conversations, she couldn’t share incisive ideas, germane comments, or witty asides. Her thoughts were increasingly trapped in her head. “She has very relevant and important and interesting things to say,” says her sister, Tosini. “It’s just hard not being able to say things, but also not being able to say things right in the moment.” McClellan found herself getting angry at other House members who mistook Wexton’s speech struggles for some sort of cognitive decline. Wexton says it was particularly frustrating to be spoken to as if she weren’t aware of who was talking to her—or what they were talking about. Even “some well-meaning colleagues,” she says, confused her “physical decline for a mental one” and spoke to her “like a child.” A text-to-speech tool on her tablet helps Wexton compensate for vocal impairment. Help came from an unexpected source. ElevenLabs, a startup that uses artificial intelligence to create audio models of people’s voices, reached out to Wexton’s office last spring with an offer: Send us old clips of your voice and we’ll create an audio model that sounds exactly like you. Wexton agreed. She calls the result a “scary-good replica of my voice,” and it is. It sounds like her, duplicating how she pronounces certain words and the speed at which she speaks. It even pauses for a breath between sentences. Wexton debuted the tool on the House floor last July, becoming the first member of Congress ever to use assistive voice technology in the chamber. “Now, if I could just get it to write speeches for me, I’d be all set,” she jokes. Still, even with the tool, Wexton tries to talk when she can. The essential mantra with PSP, she says, is simple: “Use it or lose it.” Living with PSP is a physical and emotional challenge—and, quite literally, an existential one. It’s also a logistical pain. Wexton’s week-to-week schedule is packed with rounds of occupational and physical therapy, exercises she needs to manage her symptoms. She gets quarterly Botox injections to assist with dystonia. She pops lots of pills. Driving herself anywhere is out of the question. So is wearing makeup, as she lacks the manual dexterity to apply it. What Carter calls Wexton’s “princess hair”—which is thick, full, and well past shoulder length—is tough to maintain. Wexton is unable to shampoo it, so now she receives regular blowouts. Yet while her daily life has changed, her approach to work hasn’t. Our interview was rescheduled several times, as public events and floor votes in the House conflicted with various dates we’d chosen. “People are astonished that, as difficult as her health journey has become, she is at every single vote,” Spanberger says. “I don’t know who else would have the type of health impacts that she’s faced and still do the job like she does the job.” In December 2023, the House passed the National Plan to End Parkinson’s Act, a bill Wexton cosponsored. Signed into law this past summer, it’s the first-ever federal legislation exclusively focused on Parkinson’s and other neurodegenerative diseases, with an emphasis on funding the development of better therapeutic drugs. Last spring, Wexton led a bipartisan resolution to recognize May as PSP Awareness Month. She has also sponsored the Healthy Brains Act, which would direct the National Institutes of Health to conduct research into the effect of environmental toxins on the development and progression of neurodegenerative diseases. If politics is hardball, then this is Wexton digging in for a final at-bat: A terminal illness may get me, but not before I swing for the fences. Surrounded by law-school housemates and sister-in-law Alison Lepard (far right), Wexton is determined to live as long as she can, as well as she can. “Just because I would be retiring didn’t mean I was going to step back,” she says. “I was going to lean in. I now had a deadline on the priorities I wanted to get done and the ways I wanted to shape my legacy, and I’ve been working very hard to achieve that.” None of this surprises the people who know Wexton best. Spanberger says her friend always faces problems “head-on.” McClellan calls Wexton “a fighter.” Pantelyat, the Johns Hopkins PSP specialist, says Wexton “just doesn’t stop. She’s relentless. She’s incredibly resilient. And she obviously doesn’t give up.” Just because I would be retiring didn’t mean I was going to step back. It would be easy, Wexton says, to dwell on the dark side of her disease—and in many moments, she has. But the one thing she can control “is how I approach the situation in front of me—which is finishing out this job, which I consider the honor of my life, on my terms.” As Wexton said this to me, I was reminded of a story she shared. The initial words she heard her AI talk-to-text program speak out loud were from Shakepeare’s Hamlet, the famous soliloquy in which the titular Danish prince weighs life and death. Should he weather the slings and arrows of existence? Or should he shuffle off this mortal coil? Wexton was with Andrew, her husband, as the opening lines echoed from her iPad: To be or not to be, that is the question. A broad smile appeared on Andrew’s face. Wexton began crying happy tears. It was the first time in months they had heard her voice, speaking in full sentences, and in that moment something became clear. Wexton would choose to be. This article appears in the January 2025 issue of Washingtonian. The post Rep. Jennifer Wexton’s Way Through first appeared on Washingtonian.