Cognitive Rehab: One Patient's Painstaking Path Through Long COVID-19 Therapy

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“I approach a red light, my brain knows that it’s red, but it’s not reacting to the rest of my body to put my foot on the brake. Do you understand how terrifying that is?”

Samantha Lewis, whose long-haul COVID-19 symptoms include difficulties with memory and concentration, in her bathroom, where an index card helps remind her how to brush her teeth and floss, in Aurora, Ill., Oct. 6, 2021.

Over several months, The New York Times visited Lewis, interviewed her doctors, attended her therapy sessions and read her medical records. Before she was infected with the coronavirus in October 2020, experiencing a modest initial illness that did not require hospitalization, she was successfully juggling a demanding, detail-oriented job while raising a child with autism and attention deficit hyperactivity disorder.

One year after infection, 63% of 156 patients at Mount Sinai Health System’s post-COVID-19 program reported cognitive problems like trouble with short-term memory and planning. Most reported ongoing brain fog, dizziness, headaches or fatigue, and many reported labored breathing or palpitations. Nearly half of 102 patients had stopped working full time.

Before COVID-19, Lewis was an avid roller skater with the roller derby nickname “Savage Siren”; after COVID-19, her balance became so unsteady, she used a walker and then a cane. Especially difficult is feeling less able to support Mariah. “I’m her person,” Lewis said, lamenting that ringing and buzzing in her ears makes sounds so painful she sometimes has to ask Mariah, who loves to talk, to be quiet.Mariah replied: “That’s hard because you’re not supposed to be broken.”“I feel so stupid,” Lewis exclaimed.Beginning therapy

“Oftentimes, doctors will have told them, ‘You look fine, this is made up in your head, forget about it,’” said Dr. Elliot Roth, an attending physician at the AbilityLab’s Brain Innovation Center and chair of physical medicine and rehabilitation at Northwestern. One month post-infection, she had to nap by noon every day and was so dizzy that things spun when she stood or walked. Once, she fainted while putting away groceries, hitting her head on the microwave and kitchen counter. Mariah said she asked, “Are you OK?” three times, becoming tearful, before Lewis opened her eyes.

But neurological problems agonized her the most. Accustomed to cooking meals from scratch, including lunches for co-workers, she couldn’t follow recipes. “I was the person that fed everyone and now I struggle to figure out what I can feed myself,” she said.Such lapses were “really, really strange” for someone typically so responsible she seemed to do “the job of 12 people,” Moylan said. “It was almost like she was drunk.

 

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Yes. That’s why I don’t drive 🤣

a lof of unknowns on the long term impact of covid19 as well as the vaccines that many has taken.

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