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One Patient’s Painstaking Path Through Long COVID-19 Therapy

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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. (Alex Wroblewski/The New York Times)

Samantha Lewis, whose long-haul COVID-19 signs embody difficulties with reminiscence and focus, in her lavatory, the place an index card helps remind her learn how to brush her enamel and floss, in Aurora, Ill., Oct. 6, 2021. (Alex Wroblewski/The New York Times)

AURORA, Ill. — There is sobering proof of Samantha Lewis’ battle with lengthy COVID-19 on her lavatory mirror.

Above the sink, she has posted a neon pink index card scrawled with 9 steps (4. Wet brush 5. Toothpaste) reminding her learn how to brush and floss her enamel. It is considered one of many methods Lewis, 34, has discovered from “cognitive rehab,” an intensive remedy program for COVID-19 survivors whose lives have been upended by issues like mind fog, reminiscence lapses, dizziness and debilitating fatigue.

Nearly two years into the pandemic, advances have been made in treating COVID-19 itself, however lengthy COVID-19 — a constellation of lingering health issues that some sufferers expertise — stays little understood. Post-COVID-19 clinics across the nation try completely different approaches to assist sufferers determined for solutions, however there’s little information on outcomes thus far, and docs say it’s too quickly to know what would possibly work, and for which sufferers.

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While some bodily signs of lengthy COVID-19, like shortness of breath or nausea, may be addressed with medicine, cognitive points are more difficult. Few medication exist, and whereas some deficits can rebound with time, they can be exacerbated by resuming actions too quickly or intensively.

Over a number of months, The New York Times visited Lewis, interviewed her docs, attended her remedy periods and browse her medical information. Before she was contaminated with the coronavirus in October 2020, experiencing a modest preliminary sickness that didn’t require hospitalization, she was efficiently juggling a demanding, detail-oriented job whereas elevating a toddler with autism and attention deficit hyperactivity dysfunction. But this summer time, she scored 25 on a 30-point evaluation, putting her in a pre-dementia class known as gentle cognitive impairment.

“I can feel that things are off,” she instructed a neurologist at Northwestern Memorial Hospital’s Neuro COVID-19 Clinic in Chicago who evaluated her and advisable 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 started throwing herself into a number of periods every week at Shirley Ryan AbilityLab, a rehabilitation heart that for years has helped sufferers with mind accidents, strokes and different circumstances. It has thus far handled about 600 COVID-19 survivors. There, an occupational therapist, bodily therapist and speech-language pathologist gave Lewis exercises to strengthen her reminiscence, focus, stability and endurance.

At house, 40 miles west of Chicago, Lewis practices the reminiscence and attention exercises with taking part in playing cards and a color-coded planner, and the stability exercises utilizing a Post-it marked with an “X” affixed to her wall. Smart audio system all through the tri-level city home 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 main care doctor, mentioned.

‘I feel so stupid’

Studies estimate that 10% to 30% of coronavirus sufferers could develop long-term signs and post-COVID-19 clinics are starting to characterize the expertise.

One 12 months after an infection, 63% of 156 sufferers at Mount Sinai Health System’s post-COVID-19 program reported cognitive issues like bother with short-term reminiscence and planning. Most reported ongoing mind fog, dizziness, complications or fatigue, and lots of reported labored respiratory or palpitations. Nearly half of 102 sufferers had stopped working full time.

Of greater than 1,000 sufferers from across the nation evaluated by Northwestern’s neuro-COVID-19 clinic, many have been beforehand multitaskers with busy jobs, mentioned Dr. Igor Koralnik, who heads the clinic and is Northwestern’s chief of neuro-infectious illnesses and international neurology. In a report in regards to the clinic’s first 100 sufferers, the typical age was 43.

“I was a little bit surprised with how young and functional our population was initially,” mentioned Dr. Joshua Cahan, a cognitive neurologist at Northwestern. But, he added, the cognitive signs have proved particularly “noticeable to people who are having demanding lives.”

Long COVID-19 has affected every part for Lewis. Her slowed response time prevented her from driving on highways. She has sometimes pulled over to vomit from movement illness and as soon as asked her 11-year-old daughter, Mariah, to observe the rearview mirror so she may deal with the street.

Before COVID-19, Lewis was an avid curler skater with the curler derby nickname “Savage Siren”; after COVID-19, her stability grew to become so unsteady, she used a walker after which a cane.

“She was so active before,” mentioned Stoecker, who has witnessed lapses just like the time Lewis left her pockets in Stoecker’s workplace.

She needed to sharply cut back her hours in her job as a director with an company working group properties and packages for adults with developmental disabilities and generally made errors like assigning three workers the identical activity.

“My whole field is developmental disabilities,” Lewis mentioned. “You hate to be the person that’s like, ‘I need something too.’”

Especially tough is feeling much less in a position to assist Mariah. “I’m her person,” Lewis mentioned, lamenting that ringing and buzzing in her ears makes sounds so painful she generally has to ask Mariah, who loves to speak, to be quiet.

“My cognitive stuff is a little broken,” she instructed 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 remedy on the incorrect day.

“I feel so stupid,” Lewis exclaimed.

“You’re not stupid, Mom,” Mariah mentioned. “Your brain’s just hurt a little bit and it will get better.”

Beginning remedy

“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, quickly after she started cognitive rehab.

“The restaurant is on the 12th floor of the Bank of America building,” Lewis mentioned.

Purvis asked her to repeat six numbers: 4, 7, 1, 9, 2, 6.

“4, 7, 2, 5, 6,” Lewis replied.

She took overly lengthy to finish a maze. “The lines all started to blur together,” she mentioned.

Out of 10 exams, Purvis reported, “There were five different areas in here where you’re definitely working below where you should be.”

Lewis’ fiance on the time, James Moylan (they just lately married), was skeptical initially. “Are we in kindergarten? Is this the best they can come up with?” he mentioned.

“But now,” he added, “it makes sense.”

What causes post-COVID-19 neurological signs is unclear. Theories embody irritation and overactive immune responses. Brain scans and different exams frequently present nothing amiss.

“Oftentimes, doctors will have told them, ‘You look fine, this is made up in your head, forget about it,’” mentioned Dr. Elliot Roth, an attending doctor on the AbilityLab’s Brain Innovation Center and chair of bodily drugs and rehabilitation at Northwestern.

Some scientists suppose particular elements may predispose folks to long-term signs. Forty-two % of the Northwestern clinic’s first 100 sufferers beforehand had depression or nervousness, although such sufferers would possibly merely be extra snug looking for neurological remedy, docs mentioned. Other preexisting circumstances included autoimmune illnesses and complications.

Lewis skilled depression as an adolescent, was briefly recognized with bipolar dysfunction in school and has since been intermittently handled for depression and nervousness, though she wasn’t taking psychiatric medicine earlier than COVID-19 and hasn’t wanted it since, she and Stoecker mentioned.

Her few pre-COVID-19 medicines, she mentioned, have been for pressure complications and hypothyroidism. Her historical past additionally included occasional bronchial asthma and probably an underlying autoimmune situation, psoriatic arthritis, which was recognized after COVID-19, Stoecker mentioned.

Searching for assist

Two weeks after testing optimistic and isolating at house, Lewis tried returning to work, however lasted solely two hours. A scan of her lungs discovered haziness and constricted airways.

One month post-infection, she needed to nap by midday daily and was so dizzy that issues spun when she stood or walked. Once, she fainted whereas placing away groceries, hitting her head on the microwave and kitchen counter. Mariah mentioned she asked, “Are you OK?” thrice, changing into tearful, earlier than Lewis opened her eyes.

Two days later, a hospital discovered no mind damage, she mentioned, however a health care provider there recommended she see a number of specialists, saying her signs resembled these of a few of his hospital’s nurses who had struggled with lengthy COVID-19 for months.

Soon after, a pulmonologist talked about Northwestern’s clinic and Lewis scheduled the primary out there appointment, in late March. While ready, she visited an area neurologist who recommended she simply “try harder,” she mentioned.

A heart specialist detected speedy coronary heart charge. She was recognized with a kind of dysautonomia known as POTS, which may contain dizziness. She noticed a gastroenterologist for diarrhea and nausea, and a rheumatologist for arthritis-related knee issues.

But neurological issues agonized her essentially the most. Accustomed to cooking meals from scratch, together with lunches for co-workers, she couldn’t observe recipes. “I was the person that fed everyone and now I struggle to figure out what I can feed myself,” she mentioned.

She forgot to pay a number of payments and couldn’t bear in mind why she had entered a room.

Such lapses have been “really, really strange” for somebody sometimes so accountable she appeared to do “the job of 12 people,” Moylan mentioned. “It was almost like she was drunk.”

When her neuro-COVID-19 clinic appointment got here, “it was very relieving to finally feel validated,” Lewis mentioned. Koralnik prescribed a drugs for fatigue, amantadine, which she finds useful, calling it “zoom-zoom pills.”

On the cognitive evaluation he administered, she scored “significantly lower than average” in processing pace, attention and govt operate, he mentioned, and barely common within the remaining class, working reminiscence.

The outcomes have been “crushing,” she mentioned.

Cahan, then on go away, did an in-depth follow-up when he returned in June.

On these exams, Lewis mentioned, she known as a camel a “desert llama” and when asked to depend backward from 100 by seven, “I say 93 and I’m just stuck.”

He advisable 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 probably made issues worse, however that a number of of her signs are extra according to lengthy COVID-19. “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 mentioned.

Memory exercises and stability exams

Over time, Purvis incrementally ramped up the exercises: organize numbers in descending order, repeat a sentence in reverse. She elevated noise and distraction to approximate Lewis’ busy work atmosphere. She saved the door open, turned on tv information and ultimately held periods within the bustling bodily remedy health club.

Amid the hum of treadmills, exercise bikes and different sufferers’ conversations, Lewis labored earnestly to rearrange taking part in playing cards by go well with in ascending order and flip numbers spelled with a “T,” like “two.” Simultaneously, Purvis recited phrases and Lewis tried to boost her hand at any time when one started with “B.”

“You missed 12, which is a lot more than you normally miss,” Purvis mentioned.

“Ay,” Lewis sighed, fingers fidgeting.

Two days later, asked to start at 1 and repeatedly add 9 and subtract 4 till reaching 130, Lewis was halting and gradual.

“Oh my God,” she exclaimed after ending. “That one was harder.”

But later, she precisely remembered 4 statements recited early within the session, together with, “Rubber bands last longer when refrigerated.”

“It’s been challenging,” she instructed Purvis. “I don’t feel super-disheartened, though.”

Since for some sufferers bodily or cognitive exertion exacerbates signs, Roth mentioned the AbilityLab urges sufferers to “push themselves as much as they can, but not beyond.”

An occupational therapist, Emillie Asuncion, has additionally helped. In Lewis’ workplace at work, embellished with a number of the “Star Wars” paraphernalia her husband collects, she breaks her time into small chunks: studying two pages on the pc, then opening mail, then printing papers earlier than returning to the display screen.

In an AbilityLab kitchen, Asuncion timed Lewis following a recipe for Instant Pot Tortilla Soup. It took 43 minutes as an alternative of the anticipated 30.

The purpose is to construct towards “the types of meals that she was able to do before,” Asuncion mentioned. “The whole point is to be able to have you back into your life.”

In one session, Lewis confided that when staircases or different objects, she noticed haloed echoes of the photographs.

“I was very scared to say it out loud because I thought that I was hallucinating,” Lewis mentioned. But Asuncion mentioned she was truly experiencing double imaginative and prescient, so a bodily therapist, Adam Burns, started eye coordination exercises.

“The double vision disturbs her balance,” Burns mentioned as he guided her to deal with beads on a string. In different exercises, she stood on a vibrating plate, a wood rocking platform and a foam pallet, closing her eyes or turning her head, Burns able to catch her if she fell.

On a stability check 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,” Burns mentioned. “She’s too young, she’s too strong to not get a 30.” He urged her to cease utilizing her cane.

‘I don’t really feel as misplaced’

Lewis has benefited from an understanding employer — permitting her versatile hours, partly at house, and affording time for remedy — however by late fall she may now not afford to work half time and returned to a full-time schedule. Health insurance coverage and employees’ compensation helped cowl medical payments initially however have been exhausted as her signs lingered, requiring her to borrow from her 401(ok) account.

By late September, a Northwestern neuropsychologist wrote on a cognitive analysis 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 mentioned.

When he evaluated 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 mentioned. Many sufferers have cycles the place they enhance “and then they sort of level off.” Therapists advocate ending rehab when sufferers’ objectives are met or enchancment plateaus.

Steven Jackson, AbilityLab’s administrative director of outpatient remedy companies, mentioned information on sufferers’ outcomes was being analyzed, including that the majority have been “reporting improvement in their ability to function and manage daily tasks, but not necessarily complete resolution of their symptoms or deficits.”

Stoecker just lately prescribed Adderall for fatigue that also requires Lewis to nap every day, together with within the automobile whereas Moylan drove to Mariah’s hockey observe in October. The physician mentioned she has endorsed that Lewis could all the time want the therapeutic methods and needs to 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-19 prognosis approached, 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 received encouraging information. When Cahan re-administered the 30-point check, she scored 29, indicating regular cognition. In November, she was thrilled when, held up by a harness connected to the AbilityLab’s ceiling, she curler skated across the building. And simply earlier than Thanksgiving, she scored 29 on the 30-point stability check and graduated from bodily remedy. She hopes to complete the opposite two therapies in January.

One current night in her kitchen, as she ready frozen turkey meatballs as an alternative of constructing them from scratch as earlier than, Lewis mirrored.

“There might be some adaptations that may always be there,” she mentioned. “But if we can get to 5 out of 7 good days, that might be great.”

© 2021 The New York Times Company

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