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Dealing with “Parkinson’s on steroids,” Virginia Rep. Jennifer Wexton navigates exhausting and gridlocked Congress

Rep. Jennifer Wexton, Democrat of Virginia, sat upright however slumped on the darkish leather-based sofa in her Capitol Hill workplace this week, utilizing her proper hand to prop up her neck. Identified earlier this yr with Progressive Supra-nuclear Palsy, which she has described as “Parkinsons on steroids,” she introduced in September that she would retire on the finish of her time periodin January 2025, as a result of “there is no getting better” from this illness.

She mentioned in a strained voice that the Home of Representatives’ 10-week marathon of Home periods and standoffs, a loud and ugly sequence of dysfunction, together with the ousting of a Home speaker and a number of late-night votes, has taken a toll on her physique.

Undated picture of Rep. Jennifer Wexton, Democrat of Virginia, heart.

Photograph supplied by Rep. Wexton’s workplace

Progressive Supra-nuclear Palsy, as Wexton mentioned, has no remedy. At the moment, there isn’t any therapy that may gradual its development, and it tends not to answer treatment, in line with the Nationwide Institutes of Well being. It typically worsens quickly, and most sufferers “develop severe disability within three to five years of symptom onset.” It impacts motion — lack of steadiness is a standard symptom — and causes slurred speech. Imaginative and prescient issues typically develop because the illness progresses, too.

Wexton described exhaustion, missed remedy appointments and misplaced sleep as the consequences of the latest relentless Home schedule. The narrowest of margins between the events meant she wanted to be current on Capitol Hill for the handfuls of votes and debates.

Her fatigue was so extreme that she suspects it contributed to a painful fall at her residence in Virginia 4 weeks in the past. It was the autumn that injured her neck and continues to trigger her ache.

“It’s just so hard for me now,” Wexton instructed CBS Information. Her voice and her potential to talk have been impaired by her medical situation, and her fatigue has grown.

“Fatigue absolutely does have an impact,” she mentioned throughout an prolonged interview. “The most important thing you can do is get sleep.”

She teared up a number of instances as she echoed the message she despatched to constituents in a written assertion earlier this yr: “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 mentioned. “It’s awful.”

Her voice is barely louder than a whisper, and her potential to enunciate has been weakened. She speaks rapidly, and her speech is at instances troublesome to decipher. Wexton and her workers often encourage colleagues and guests to ask her to repeat herself if they cannot perceive what she’s saying.

Wexton mentioned the bodily impairments and the challenges posed by talking are particularly painful after knowledgeable lifetime of oratory as a trial lawyer, a state legislator and a particular marketing campaign for the Home, during which she succeeded in flipping a longtime Republican Home district to Democratic management.

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

Wexton mentioned the raucous Home chamber is an more and more troublesome venue during which to work. Her listening to is impaired and her voice not carries, each results of the illness.

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

Wexton says her colleagues are supportive, however she indicated some have gotten extra distant. “They don’t know what to do with me, because they can’t understand me,” she mentioned.

As Congress was leaving for the Thanksgiving recess, Wexton’s chief of workers, Abby Carter, despatched a letter to her fellow Home lawmakers to clarify the dramatic adjustments they have been seeing in Wexton and advise them on easy methods to work together along 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.”

Carter pressured that Wexton’s “cognitive abilities are not affected by PSP,” and he or she “notices when people speak to her like a child because they wrongfully assume she is cognitively declining.” Deal with her “like you did” earlier than she introduced her analysis, Carter requested.

Her aides and colleagues mentioned this month’s lengthy and unpredictable stretch of Home enterprise within the Capitol compelled Wexton to overlook a few of her speech remedy and bodily remedy periods, that are essential to assist counteract the signs of Progressive Supra-nuclear Palsy.

She traverses the Capitol complicated with aides and strolling sticks. Wexton acknowledges the growing problem of navigating the sprawling Capitol complicated on foot, whereas preventing the ache and mobility limitations of her illness.

“There’s a lot of back and forth,” she mentioned. “It’s hard on everything.”

Wexton mentioned transferring round her personal home is usually a problem. She leans closely on the counter tops to carry up her physique as she strikes throughout her kitchen.

She has adopted some text-to-voice know-how to assist her talk with guests, constituents and colleagues. Wexton makes use of textual content chains to share concepts and nonetheless jokes with different members of the Home. She mentioned her fellow third-term Democrat Jahana Hayes of Connecticut instructed her, “You’re just as witty and funny as ever.”

Wexton mentioned, “It was really nice of her to say that.”

“Over the past few months, I have watched as she has faced physical and verbal challenges and is unable to engage in the way that I am used to,” Hayes instructed CBS Information. “However, I also continue to interact with her daily on text threads and chats, and she is still the same sharp, witty, sarcastic, quick, funny and intelligent person I met in 2019. Despite what is seen on the outside, Jenn is still Jenn.”

Wexton mentioned she nonetheless has hopes for legislative accomplishments and advocacy within the ultimate 14 months of her congressional profession.

“Childhood cancer research is really important to me,” she mentioned. Wexton needs Congress to do extra to make sure analysis and assist for “brain health and Parkinson’s, and to find a cure for (Progressive Supra-nuclear Palsy) and to [give] people more resources for it.”

Her vote stays pivotal within the narrowly divided Home, the place key votes have small margins of error. Wexton mentioned her medical situation is at all times threatening to make her existence a lonely and unhappy one due to the toll it takes on her potential to speak. However she mentioned the assist of her household, colleagues and workers have prevented her from feeling isolation and deep unhappiness. And he or she’ll proceed counting on that community as she finishes her ultimate time period in Congress: “I have a lot I still want to do.”

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