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AURORA, Ill. — There is sobering evidence of Samantha Lewis’s struggle with long Covid on her bathroom mirror.
Above the sink, she has posted a neon pink index card scrawled with nine steps (4. Wet brush 5. Toothpaste) reminding her how to brush and floss her teeth. It is one of many strategies Ms. Lewis, 34, has learned from “cognitive rehab,” an intensive therapy program for Covid-19 survivors whose lives have been upended by problems like , memory lapses, dizziness and debilitating fatigue.
Nearly two years into the pandemic, advances have been made in treating Covid itself, but long Covid — a constellation of lingering health problems that some patients experience — remains little understood. Post-Covid clinics around the country are trying different approaches to help patients desperate for answers, but there is little data on outcomes so far, and doctors say it is too soon to know what might work, and for which patients.
While some physical symptoms of long Covid, like shortness of breath or nausea, can be addressed with medication, cognitive issues are more challenging. Few drugs exist, and while some deficits can rebound with time, they can also be exacerbated by resuming activities too soon or intensively.
Over several months, The New York Times visited Ms. 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. But this summer, she scored 25 on a 30-point assessment, placing her in a pre-dementia category called mild cognitive impairment.
“I can feel that things are off,” she told a neurologist at Northwestern Memorial Hospital’s Neuro Covid-19 Clinic in Chicago who evaluated her and recommended cognitive rehab. “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?”
In July, she began throwing herself into several sessions a week at Shirley Ryan 小恩雅, a rehabilitation center that for years has helped patients with brain injuries, strokes and other conditions. It has so far treated about 600 Covid survivors. There, an occupational therapist, physical therapist and speech-language pathologist gave Ms. Lewis exercises to strengthen her memory, concentration, balance and endurance.
At home, 40 miles west of Chicago, Ms. Lewis practices the memory and attention exercises with playing cards and a color-coded planner, and the balance exercises using a Post-it marked with an “X” affixed to her wall. Smart speakers throughout the tri-level townhouse broadcast reminders like, “Samantha, it is time to take a break for lunch” and “Get your butt ready for bed.”
“These are things she legitimately needs,” Dr. Ashley Stoecker, her primary care physician, said.
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