Reprinted from the NYTimes December 3rd 2021 – Written by Pam Belluck who is a health and science writer whose honors include sharing a Pulitzer Prize and winning the Nellie Bly Award for Best Front Page Story. She is the author of Island Practice, a book about an unusual doctor. @PamBelluck
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 brain fog, 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 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 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.
‘I feel so stupid’
Studies estimate that 10 to 30 percent of coronavirus patients may develop long-term symptoms and post-Covid clinics are beginning to characterize the experience.
One year after infection, 63 percent of 156 patients at Mount Sinai Health System’s post-Covid 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.
Of more than 1,000 patients from around the country evaluated by Northwestern’s neuro-Covid 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.
“I was a little bit surprised with how young and functional our population was initially,” Dr. Joshua Cahan, a cognitive neurologist at Northwestern, said. But, he added, the cognitive symptoms have proved especially “noticeable to people who are having demanding lives.”
Long Covid has affected everything for Ms. 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.
Before Covid, Ms. Lewis was an avid roller skater with the roller derby nickname “Savage Siren”; after Covid, her balance became so unsteady, she used a walker and then a cane.
“She was so active before,” said Dr. Stoecker, who has witnessed lapses like the time Ms. Lewis left her wallet in Dr. Stoecker’s office.
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.
“My whole field is developmental disabilities,” Ms. Lewis said. “You hate to be the person that’s like, ‘I need something too.’”
Especially difficult is feeling less able to support Mariah. “I’m her person,” Ms. 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.
“My cognitive stuff is a little broken,” she told Mariah. “We’re both in repair.”
Mariah replied: “That’s hard because you’re not supposed to be broken.”
In September, she drove Mariah to autism therapy on the wrong day.
“I feel so stupid,” Ms. Lewis exclaimed.
“You’re not stupid, Mom,” Mariah said. “Your brain’s just hurt a little bit and it will get better.”
“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 Ms. Lewis in late July, soon after she started cognitive rehab.
“The restaurant is on the 12th floor of the Bank of America building,” Ms. Lewis said.
Ms. Purvis asked her to repeat six numbers: 4, 7, 1, 9, 2, 6.
“4, 7, 2, 5, 6,” Ms. Lewis replied.
She took overly long to complete a maze. “The lines all started to blur together,” she said.
Out of 10 tests, Ms. Purvis reported, “There were five different areas in here where you’re definitely working below where you should be.”
Ms. Lewis’s fiancé at the time, James Moylan (they recently married), was skeptical initially. “Are we in kindergarten? Is this the best they can come up with?” he said. “But now,” he added, “it makes sense.”
What causes post-Covid 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 chairman of physical medicine and rehabilitation at Northwestern.
Ms. Lewis experienced depression as a teenager, was briefly diagnosed with bipolar disorder in college and has since been intermittently treated for depression and anxiety, although she wasn’t taking psychiatric medication before Covid and hasn’t needed it since, she and Dr. Stoecker said.
Her few pre-Covid medications, she said, were for tension headaches and hypothyroidism. Her history also included occasional asthma and possibly an underlying autoimmune condition, psoriatic arthritis, which was diagnosed after Covid, Dr. Stoecker said.
Searching for help
Two weeks after testing positive and isolating at home, Ms. 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. Mariah said she asked, “Are you OK?” three times, becoming tearful, before Ms. Lewis opened her eyes.
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 for months.
Soon after, a pulmonologist mentioned Northwestern’s clinic and Ms. Lewis scheduled the first available appointment, in late March. While waiting, she visited a local neurologist who suggested she just “try harder,” she said.
A cardiologist detected rapid heart rate. She was diagnosed with a type of dysautonomia called POTS, which can involve dizziness. She saw a gastroenterologist for diarrhea and nausea, and a rheumatologist for arthritis-related knee problems.
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.
She forgot to pay several bills and couldn’t remember why she had entered a room.
Such lapses were “really, really strange” for someone typically so responsible she seemed to do “the job of 12 people,” Mr. Moylan said. “It was almost like she was drunk.”
When her neuro-Covid clinic appointment came, “it was very relieving to finally feel validated,” Ms. Lewis said. Dr. Koralnik prescribed a medication for fatigue, amantadine, which she finds helpful, calling it “zoom-zoom pills.”
On the cognitive assessment he 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.
The results were “crushing,” she said.
Dr. Cahan, then on leave, did an in-depth follow-up when he returned in June.
On those tests, Ms. Lewis said, she called a camel a “desert llama” and when asked to count backward from 100 by seven, “I say 93 and I’m just stuck.”
He recommended cognitive rehab, writing: “I think problems with processing speed are impacting many other cognitive domains. This may interfere with your ability to take in conversations, focus, or try to retrieve memories.”
Doctors say that a concussion from her kitchen fall possibly made things worse, but that several of her symptoms are more consistent with long Covid. “We think that Covid-19 is causing her cognitive ability problems, and we’ve seen that time and again in more than 800 patients,” Dr. Koralnik said.
Memory exercises and balance tests
Over time, Ms. Purvis, the speech-language pathologist, incrementally ramped up the exercises: arrange numbers in descending order, repeat a sentence in reverse. She increased noise and distraction to approximate Ms. Lewis’s busy work environment. She kept the door open, turned on television news and eventually held sessions in the bustling physical therapy gym.
Amid the hum of treadmills, exercise bikes and other patients’ conversations, Ms. Lewis worked earnestly to arrange playing cards by suit in ascending order and flip numbers spelled with a “T,” like “two.” Simultaneously, Ms. Purvis recited words and Ms. Lewis tried to raise her hand whenever one started with “B.”
“You missed 12, which is a lot more than you normally miss,” Ms. Purvis said.
“Ay,” Ms. Lewis sighed, fingers fidgeting.
Two days later, asked to start at 1 and repeatedly add 9 and subtract 4 until reaching 130, Ms. Lewis was halting and slow.
“Oh my God,” she exclaimed after finishing. “That one was harder.”
But later, she accurately remembered four statements recited early in the session, including, “Rubber bands last longer when refrigerated.”
“It’s been challenging,” she told Ms. Purvis. “I don’t feel super-disheartened, though.”
Since for some patients physical or cognitive exertion exacerbates symptoms, Dr. Roth said the AbilityLab urges patients to “push themselves as much as they can, but not beyond.”
An occupational therapist, Emillie Asuncion, has also helped. In Ms. Lewis’s office at work, decorated with some of the “Star Wars” paraphernalia her husband collects, she breaks her time into small chunks: reading two pages on the computer, then opening mail, then printing papers before returning to the screen.
In an AbilityLab kitchen, Ms. Asuncion timed Ms. Lewis following a recipe for Instant Pot Tortilla Soup. It took 43 minutes instead of the expected 30.
The goal is to build toward “the types of meals that she was able to do before,” Ms. Asuncion said. “The whole point is to be able to have you back into your life.”
In one session, Ms. Lewis confided that when looking at staircases or other objects, she saw haloed echoes of the images.
“I was very scared to say it out loud because I thought that I was hallucinating,” Ms. Lewis said. But Ms. Asuncion said she was actually experiencing double vision, so the physical therapist, Adam Burns, began eye coordination exercises.
“The double vision disturbs her balance,” Mr. Burns said as he guided her to focus on beads on a string. In other exercises, she stood on a vibrating plate, a wooden rocking platform and a foam pallet, closing her eyes or turning her head, Mr. Burns ready to catch her if she fell.
On a balance test that included climbing stairs and walking a line, she scored 26 out of 30, up from 22 three weeks earlier.
Still, “she should have enough stability and control in her body movement to ascend and descend stairs without an issue,” Mr. Burns said. “She’s too young, she’s too strong to not get a 30.” He urged her to stop using her cane.
‘I don’t feel as lost’
Ms. Lewis has benefited from an understanding employer — allowing her flexible hours, partly at home, and affording time for therapy — 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 Ms. 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,” Dr. Roth said.
When he evaluated Ms. Lewis in September, she reported: “I’m sending better emails” and “I don’t feel as lost.”
Still, “there’s certainly a possibility that she may not become fully recovered,” he said. Many patients have cycles where they improve “and then they sort of level off.” Therapists recommend ending rehab when patients’ goals are met or improvement plateaus.
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.”
Dr. Stoecker recently prescribed Adderall for fatigue that still requires Ms. Lewis to nap daily, including in the car while Mr. Moylan drove to Mariah’s hockey practice in October. The doctor said she has counseled that Ms. Lewis may always need the therapeutic strategies and should be “realistic and think, ‘This is kind of where I am, and I don’t know that it’s going to improve.’”
As the October anniversary of her Covid diagnosis approached, Ms. Lewis texted, “I’m a bit emotional but also feeling strong for having come so far and uncertainty for how much further I can go.”
But that month, she got encouraging news. When Dr. Cahan re-administered the 30-point test, she scored 29, indicating normal cognition. In November, she was thrilled when, held up by a harness attached to the AbilityLab’s ceiling, she roller skated around the building. And just before Thanksgiving, she scored 29 on the 30-point balance test and graduated from physical therapy. She hopes to finish the other two therapies in January.
One recent evening in her kitchen, as she prepared frozen turkey meatballs instead of making them from scratch as before, Ms. Lewis reflected.