Rep. Wexton's Unstoppable Journey: Conquering "Parkinson's on Steroids" Amidst a Gridlocked Congress

Rep. Jennifer Wexton was diagnosed with a severe variant of Parkinson's Disease earlier this year, forcing her to retire at the end of her term.

Rep. Wexton's Unstoppable Journey: Conquering "Parkinson's on Steroids" Amidst a Gridlocked Congress
18 Nov 2023, 04:29 PM
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Rep. Jennifer Wexton Announces Retirement Due to Progressive Supra-nuclear Palsy

Rep. Jennifer Wexton, Democrat of Virginia, sat upright but slumped on the dark leather couch in her Capitol Hill office this week, using her right hand to prop up her neck. Diagnosed earlier this year with Progressive Supra-nuclear Palsy, which she has described as "Parkinsons on steroids," she announced in September that she would retire at the end of her term, in January 2025, because "there is no getting better" from this disease.

She said in a strained voice that the House of Representatives' 10-week marathon of House sessions and standoffs, a loud and ugly sequence of dysfunction, including the ousting of a House speaker and multiple late-night votes, has taken a toll on her body.

Progressive Supra-nuclear Palsy, as Wexton said, has no cure. At this time, there is no treatment that will slow its progression, and it tends not to respond to medication, according to the 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, too.

Wexton's Exhaustion Takes a Toll

Wexton's Exhaustion Takes a Toll

Virginia Representative, Jennifer Wexton, has recently opened up about the toll that the relentless House schedule has taken on her health. The narrow margin between the parties has required her constant presence on Capitol Hill for numerous votes and debates, leading to exhaustion, missed therapy appointments, and lost sleep.

Wexton believes that her severe fatigue may have even contributed to a painful fall at her home in Virginia four weeks ago, resulting in a neck injury that continues to cause her pain.

"It's just so hard for me now," Wexton shared with CBS News. Her medical condition has impaired her voice and ability to speak, while her fatigue has only worsened. "Fatigue absolutely does have an impact," she emphasized during an extended interview. "The most important thing you can do is get sleep."

Wexton became emotional several times as she reiterated the message she previously sent to her constituents: "I'm heartbroken to have to give up something I have loved after so many years of serving my community."

"I've been worse since September. It's been tiring. It's been really hard being here for the ten weeks," she admitted. "It's awful."

Her voice is barely louder than a whisper, and her ability to enunciate has been weakened. She speaks quickly, and her speech is at times difficult to decipher. 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 impairments and the challenges posed by speaking are especially painful after a professional life of oratory as a trial attorney, a state legislator and a distinctive campaign for the House, in which 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 just fine. It's just so frustrating for me to not be able to communicate verbally."

Wexton said the raucous House chamber is an increasingly difficult venue in which to work. Her hearing is impaired and her voice no longer carries, both effects of the disease.   

"It's hard because when you need to be on the [House] floor, you need 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.

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As Congress was leaving for the Thanksgiving recess, Wexton's chief of staff, Abby Carter, sent a letter to her fellow House lawmakers to explain the dramatic changes they were seeing in Wexton and advise them on how to interact with her. 

"Our team knows that her current neck strain can be jarring to see 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 are speaking with her in person. It is completely okay to ask her to repeat herself (we do it regularly), ask her to write down what she's saying on her iPad, ask our staffer who is with her on the floor to help, or just tell her that you'll follow up in texts." 

"You may also have seen her crying on the floor and assume she's really upset or something is wrong," Carter continued, "but crying more easily is another symptom of the disease. Sometimes she'll cry about happy moments or sad things. Sometimes the warmest hug from certain Members or friends will also spark tears. When the tears do come, that also affects her ability to speak in a way that you can easily understand."

Wexton's Battle with Progressive Supra-nuclear Palsy

Carter stressed that Wexton's "cognitive abilities are not affected by PSP," and she "notices when people speak to her like a child because they wrongfully 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 in the Capitol forced Wexton to miss some of her speech therapy and physical therapy sessions, which are critical 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 fighting the pain and mobility limitations of her disease.

"There's a lot of back and forth," she said. "It's hard on everything."

Wexton said moving around her own house can be a challenge. She leans heavily on the countertops to hold up 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 fellow third-term Democrat Jahana Hayes of Connecticut told her, "You're just as witty and funny as ever."

Wexton said, "It was really nice of her to say that."

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Over the past few months, I have observed her facing physical and verbal challenges, hindering her usual engagement," a source stated. "However, I still communicate with her regularly through text threads and chats, and she remains the same sharp, witty, sarcastic, quick, funny, and intelligent person I met in 2019. Despite her external struggles, she is still herself."

Another source mentioned that there are still hopes for legislative accomplishments and advocacy during the final 14 months of her congressional career. "Childhood cancer research holds great importance to her," said the source. Wexton urges Congress to prioritize research and support for brain health, Parkinson's disease, Progressive Supra-nuclear Palsy, and provide more resources to those affected.

Her vote continues to play a pivotal role in the closely divided House, where every vote counts. Wexton acknowledges that her medical condition constantly threatens to make her feel lonely and sad due to its impact on her ability to communicate. However, the support from her family, colleagues, and staff has prevented her from experiencing isolation and deep sadness. She plans to rely on this network as she completes her final term in Congress, stating, "I still have a lot I want to accomplish."