AURORA, Ill. — There is sobering evidence of Samantha Lewis’ struggle with long COVID-19 on her bathroom mirror.
Above the sink, she has posted an index card scrawled with nine steps reminding her how to brush her teeth. It is one of many strategies Lewis, 34, has learned from “cognitive rehab,” an intensive therapy program for COVID-19 survivors whose lives have been upended by problems like brain fog, memory lapses, dizziness and debilitating fatigue.
Nearly two years into the pandemic, advances have been made in treating COVID-19 itself, but long COVID-19 — a constellation of lingering health problems that some patients experience — remains little understood. Post-COVID-19 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-19, 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 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. “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 AbilityLab, a rehabilitation center that for years has helped patients with brain injuries, strokes and other conditions. It has so far treated about 600 COVID-19 survivors. There, an occupational therapist, physical therapist and speech-language pathologist gave Lewis exercises to strengthen her memory, concentration, balance and endurance.
At home, 40 miles west of Chicago, 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 house broadcast reminders like, “Get your butt ready for bed.”
“These are things she legitimately needs,” said Dr. Ashley Stoecker, her primary care physician.
‘We’re both in repair’
Studies estimate that 10% to 30% of coronavirus patients may develop long-term symptoms and post-COVID-19 clinics are beginning to characterize the experience.
One year after infection, 63% of 156 patients at Mount Sinai Health System’s post-COVID-19 program reported cognitive problems. Most reported ongoing brain fog, dizziness, headaches or fatigue, and many reported labored breathing or palpitations.
Of more than 1,000 patients from around the country evaluated by Northwestern’s neuro-COVID-19 clinic, many were previously multitaskers with busy jobs, said Dr. Igor Koralnik, who heads the clinic and is Northwestern’s chief of neuro-infectious diseases and global neurology. In a report about the clinic’s first 100 patients, the average age was 43.
Long COVID-19 has affected everything for Lewis. Her slowed reaction time prevented her from driving on highways. She has occasionally pulled over to vomit from motion sickness and once asked her 11-year-old daughter, Mariah, to monitor the rearview mirror so she could focus on the road. She had to sharply reduce her hours in her job as a director with an agency operating group homes and programs for adults with developmental disabilities and sometimes made mistakes like assigning three employees the same task.
Especially difficult is feeling less able to support Mariah. “I’m her person,” Lewis said.
“My cognitive stuff is a little broken,” she told Mariah. “We’re both in repair.”
“Repeat this sentence: ‘The restaurant is on the top floor of the Bank of America building on 12th,’” Melissa Purvis, a speech-language pathologist, instructed Lewis in late July, soon after she started cognitive rehab.
“The restaurant is on the 12th floor of the Bank of America building,” Lewis said.
Purvis asked her to repeat six numbers: 4, 7, 1, 9, 2, 6.
“4, 7, 2, 5, 6,” Lewis replied.
Out of 10 tests, Purvis reported, “There were five different areas in here where you’re definitely working below where you should be.”
What causes post-COVID-19 neurological symptoms is unclear. Theories include inflammation and overactive immune responses. Brain scans and other tests frequently show nothing amiss.
“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.
Searching for help
Two weeks after testing positive and isolating at home, Lewis tried returning to work, but lasted only two hours. A scan of her lungs found haziness and constricted airways.
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.
Two days later, a hospital found no brain injury, she said, but a doctor there suggested she see several specialists, saying her symptoms resembled those of some of his hospital’s nurses who had struggled with long COVID-19 for months.
Soon after, a pulmonologist mentioned Northwestern’s clinic and Lewis scheduled the first available appointment, in late March. While waiting, she visited a local neurologist who suggested she just “try harder,” she said.
When her neuro-COVID-19 clinic appointment came, “it was very relieving to finally feel validated,” Lewis said.
On the cognitive assessment Koralnik administered, she scored “significantly lower than average” in processing speed, attention and executive function, he said, and barely average in the remaining category, working memory.
“We think that COVID-19 is causing her cognitive ability problems, and we’ve seen that time and again in more than 800 patients,” Koralnik said.
Over time, Purvis incrementally ramped up the exercises. She increased noise and distraction to approximate Lewis’ busy work environment.
Amid the hum of treadmills, exercise bikes and other patients’ conversations, Lewis worked earnestly to arrange playing cards by suit in ascending order and flip numbers spelled with a “T,” like “two.” Simultaneously, Purvis recited words and Lewis tried to raise her hand whenever one started with “B.”
“You missed 12, which is a lot more than you normally miss,” Purvis said.
“Ay,” Lewis sighed, fingers fidgeting.
“It’s been challenging,” she told Purvis. “I don’t feel super-disheartened, though.”
‘I don’t feel as lost’
Lewis has benefited from an understanding employer, but by late fall she could no longer afford to work part time and returned to a full-time schedule. Health insurance and workers’ compensation helped cover medical bills initially but were exhausted as her symptoms lingered, requiring her to borrow from her 401(k) account.
By late September, a Northwestern neuropsychologist wrote on a cognitive evaluation of Lewis: “There has been some improvement with time, rehab therapies and medication.”
“I actually think she’s responding a tiny bit quicker and better to some of the interventions than some others do,” Roth said.
Still, “there’s certainly a possibility that she may not become fully recovered,” he said.
Steven Jackson, AbilityLab’s administrative director of outpatient therapy services, said data on patients’ results was being analyzed, adding that most were “reporting improvement in their ability to function and manage daily tasks, but not necessarily complete resolution of their symptoms or deficits.”
One recent evening in her kitchen, as she prepared frozen turkey meatballs instead of making them from scratch as before, Lewis reflected.
“There might be some adaptations that may always be there,” she said. “But if we can get to 5 out of 7 good days, that might be great.”