Coping with ‘Parkinson’s on steroids’, Virginia Rep. Jennifer Wexton navigates an exhausting and gridlocked Congress

Rep. Jennifer Wexton, Democrat of Virginia, sat upright but slouched on the dark leather sofa in her Capitol Hill office this week, using her right hand to support her neck. Diagnosed earlier this year with progressive supra-nuclear palsy, which she has described as “Parkinson’s on steroids”, she announced in September that she would retire at the end of his termin January 2025 because “there is no improvement” from this disease.

She said in a strained voice that the House’s 10-week marathon of house sessions and standoffs, a loud and ugly sequence of dysfunction, including impeachment of a house speaker and several late-night polls, have taken a toll on her body.

Undated picture of rep. Jennifer Wexton, Democrat of Virginia, center.

Photo provided by rep. Wexton’s office

Progressive supra-nuclear palsy, as Wexton said, has no cure. At present, there is no treatment that will slow the progression, and it tends not to respond to medication, according to National Institutes of Health. It often worsens rapidly, and most patients “develop severe disability within three to five years of symptom onset.” It affects movement – loss of balance is a common symptom – and causes slurred speech. Vision problems often develop as the disease progresses.

Wexton described exhaustion, missed therapy appointments and lost sleep as the effects of the recent relentless House schedule. The narrowest of margins between the parties meant she had to be present on Capitol Hill for dozens of votes and debates.

Her fatigue was so severe that she suspects it contributed to a painful fall at her home in Virginia four weeks ago. It was the fall that injured her neck and continues to cause pain.

“It’s just so hard for me right now,” Wexton told CBS News. Her voice and her ability to speak have been weakened by her medical condition and her fatigue has increased.

“Fatigue definitely has an impact,” she said during an extended interview. “The most important thing you can do is sleep.”

She cried several times as she repeated the message she sent to voters in a written statement earlier this year: “I am devastated to have to give up something I have loved after so many years of serving my community.”

“I’ve been feeling worse since September. It’s been tiring. It’s been really hard to be here for those ten weeks,” she said. “It’s terrible.”

Her voice is barely above a whisper and her ability to enunciate is impaired. She speaks quickly and her speech is difficult to decipher at times. Wexton and her staff regularly encourage colleagues and visitors to ask her to repeat herself if they can’t understand what she’s saying.

Wexton said the physical disabilities and challenges of speaking are especially painful after a professional life of speaking as a trial lawyer, a state legislator and a signature campaign for the House, where she succeeded in flipping a longtime Republican House district to Democratic control.

“I want to try to jump into conversations and I can’t,” Wexton said. “Cognitively, I’m fine. It’s just so frustrating for me not to be able to communicate verbally.”

Wexton said the tumultuous House chamber is an increasingly difficult place to work. Her hearing is impaired and her voice no longer carries, both parts of the disease.

“It’s hard because when you have to be on [House] the floor, you have to be on the floor,” she said.

Wexton says her colleagues are supportive, but she indicated some are becoming more distant. “They don’t know what to do with me because they can’t understand me,” she said.

When Congress left for the Thanksgiving break, Wexton’s chief of staff, Abby Carter, sent a letter to her House colleagues explaining the dramatic changes they saw in Wexton and advising them on how to interact with her.

“Our team knows that her current neck strain can be jarring to watch and it can be difficult for members to understand the Congresswoman, especially on the floor when it’s loud,” Carter wrote. “We ask that you give her some patience when you talk to her in person. It’s perfectly okay to ask her to repeat herself (we do this regularly), ask her to write down what she says on her iPad, ask our staff who’s with her on the floor to help, or just tell her you’ll follow up in texts.”

“You might also see her crying on the floor and assume she’s really upset or something’s wrong,” Carter continued, “but crying more easily is another symptom of the disease. Sometimes she’ll cry over happy moments or sad things. Sometimes the warmest hug from certain members or friends will also trigger tears. When the tears come, it also affects her ability to speak in a way that you can easily understand.”

Carter emphasized that Wexton’s “cognitive abilities are not affected by PSP” and she “notices when people talk to her like a child because they mistakenly assume she is cognitively declining.” Treat her “like you did” before she announced her diagnosis, Carter asked.

Her aides and colleagues said this month’s long and unpredictable stretch of House business at the Capitol forced Wexton to miss some of her speech therapy and physical therapy sessions, which are essential to help counteract the symptoms of Progressive Supra- nuclear palsy.

She traverses the Capitol complex with aides and walking sticks. Wexton acknowledges the increasing challenge of navigating the sprawling Capitol complex on foot while battling the pain and mobility limitations of her disease.

“There’s a lot of back and forth,” she said. “Everything is hard.”

Wexton said moving around your own house can be a challenge. She leans heavily on the counter tops to support her body as she moves across her kitchen.

She has adopted some text-to-voice technology to help her communicate with visitors, constituents and colleagues. Wexton uses text chains to share ideas and still jokes with other members of the house. She said her colleague Jahana Hayes of Connecticut told her, “You’re as witty and funny as ever.”

Wexton said: “It was really nice of her to say that.”

“Over the last few months, I’ve seen her face physical and verbal challenges and not be able to engage in the way that I’m used to,” Hayes told CBS News. “But I also continue to interact with her daily on text threads and chats, and she remains the same sharp, witty, sarcastic, quick-witted, funny and intelligent person that I met in 2019. Despite what appears on the outside , Jenn is still Jenn.”

Wexton said she still has hope for legislative results and advocacy in the final 14 months of her congressional career.

“Children’s cancer research is really important to me,” she said. Wexton wants Congress to do more to ensure research and support for “brain health and Parkinson’s and find a cure for (Progressive Supra-nuclear Palsy) and [give] people more resources for it.”

Her vote remains decisive in the closely divided House, where key votes have small margins of error. Wexton said her medical condition always threatens to make her existence lonely and sad because of the toll it takes on her ability to communicate. But she said the support of her family, colleagues and staff has kept her from feeling isolated and deeply saddened. And she will continue to rely on that network as she finishes her final term in Congress: “I have a lot I still want to do.”

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