For long COVID-19 patients with brain fog and other neurological symptoms, a Penn program seeks answers

Angelique Deshields, a registered nurse who worked in a Delaware County retirement community, was part of the Philadelphia area’s first wave of COVID-19 victims. Almost a year and a half later, she has not fully recovered.

“Nothing’s ever really gone away,” she said.

Now on disability, Deshields, 49, got “very sick” from COVID-19 in April 2020. She made multiple trips to the emergency department and, weeks after her symptoms started, spent three days in the hospital for difficulty walking. She still has shortness of breath, heart damage, periodic rashes, and stomach upset.

Among the most distressing lingering symptoms are the neurological ones: headaches, neck pain, and thinking problems that made work impossible. Until she got help at Penn Medicine’s Neuro COVID Clinic, she was unable even to help her husband and daughter at home in Clifton Heights. Her memory was shot. She was burning food. She couldn’t concentrate on anything. She bought all the wrong things at the grocery store.

“I was at my wit’s end,” said Deshields, who considered herself organized before she got sick. “I was having a hard time doing anything at home.”

Deshields entered Penn Medicine’s program for people with long COVID, those with symptoms that continue for weeks or months. (These lasting problems can occur in people who have mild symptoms as well as those who were hospitalized.) She was referred to a program started in the spring by four neurologists who wanted to focus on the growing group of COVID-19 survivors with neurological symptoms. They wanted to standardize treatment and testing for such patients and study the results. From there, Deshields went to Alexandra Merlino, a speech language pathologist whose job was to help Deshields learn to function with her newly foggy brain.

Sara Manning Peskin, a neurologist who specializes in impaired cognition, said she and other doctors noticed toward the end of 2020 that more people were coming to neurologic clinics complaining of brain fog after having COVID-19. They were different from other patients, and there were too many of them for one doctor.

“The department realized it would be better to have a more centralized pathway for these folks,” she said.

While brain fog, a colloquial term that means people believe they are not thinking as clearly as usual, was the most common complaint, patients also had headaches, dizziness, balance problems, and unusual fatigue.

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Many hospitals and health systems now have special programs for people with long COVID. Penn is among a smaller number, including Yale University, that have specialized clinics just for people with neurological symptoms, doctors said.

Matthew Schindler, another neurologist with the Penn program, said that no matter which of the clinic’s four neurologists patients see, they are asked the same questions and receive a standardized exam that includes cognitive testing and a full neurological work-up. This helps doctors detect patterns and conduct research.

Schindler said many patients have noticed cognitive problems after having COVID-19, including worse concentration, short-term memory, word-finding, and multitasking. “Deficits in these areas can be frustrating,” he said.

Doctors still don’t know why patients are having these symptoms, Manning said. Many of their brain scans appear normal. It’s possible that there is vascular damage or that inflammation has disrupted the brain. Many patients also suffer from other conditions that can affect brain functioning: anxiety, depression, poor sleep, or dementia. Some are also on medications that can affect cognition. One of the first steps is to switch patients to drugs less likely to impair thinking and to address their mental health and sleeping issues.

Schindler and Manning said many patients are improving slowly. Schindler said he tries to prepare patients for a difficult climb. “This is a very slow process” that may take weeks or months, he tells them.

Most patients with cognitive problems are referred to physical therapy, which also benefits the brain, or to speech therapy, which helps patients train new pathways in their brains.

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Many of the patients go to Merlino for what she calls cognitive remediation training. She described the symptoms of brain fog in more detail than the doctors, saying she sees problems with executive function, planning, time management, word-finding, attention, and processing. Occasionally, she sees a long COVID patient who is having trouble swallowing or coordinating speech and breathing.

The COVID brain-fog patients she sees are similar to others with chemo brain or concussions. Patients who have had concussions have told her, “This feels exactly the same as when I had my concussion several years ago.”

She teaches patients about numerous coping strategies, including using lists, alarms, calendars, mindfulness, and saying aloud what they’re doing to enhance memory. During a recent session with Deshields, Merlino concentrated on her patient’s problems with attention, organization, and distraction.

For her homework, Deshields, who has been seeing Merlino for two months, kept track of how long she could do such things as read a book or garden without getting too distracted to continue. In most cases, it was around five minutes. “I found if my husband or anyone was around, they could distract me in four seconds,” Deshields said. Once distracted, “I forget what I’m doing and may just leave it altogether.”

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Merlino explained a five-level hierarchy of attention. People have to be good at the lower levels before proceeding to the higher levels, which involve multitasking. Deshields is mostly working on the second level from the bottom, the ability to attend to one thing for a longer period.

Merlino gave Deshields two five-minute tests on the computer to see how well she could concentrate. One that tested and strengthened working memory involved pictures of animals — a lemur, frog, chipmunk, elephant, fish, and penguin — that popped up randomly. Deshields’ job was to remember whether she’d seen a particular animal two slides earlier. That got confusing because the same animals kept reappearing. The other showed a woman calmly reading numbers aloud. The challenge was to press the computer mouse when she heard two consecutive numbers, like 4 and 5. This one included a distraction, a news broadcast in the background.

Deshields rated both tests a seven out of 10 for difficulty but said the one with distraction was worse. “It was annoying with the noise in the background,” she said. “I was trying not to listen to it, but it was just ridiculous.”

Merlino decided to tweak the exercise before their next session so Deshields would find the work easy enough to score 75% or higher. “That’s where your brain is learning and getting stronger,” she said.

The session ended with a new homework assignment. Deshields was to time her tasks at a reasonable level, starting at five or six minutes, and then take a short, timed break. When the break was over, she had to go back to the same task until it was completed. She was to find a quiet place to work and try to do activities she found challenging. When she had to interrupt her work, she was to write a “stop note” to remind herself what she was doing when she quit. That would make it easier to pick up the work again.

Deshields said the therapy has definitely helped. She makes a list now of all the things she needs when she leaves the house, so she doesn’t have to go back several times. If she reads a mystery book, she takes notes on the characters so she can keep them straight. Her days are much more organized.

Earlier in her recovery, she was scared every day. “Will I ever be able to get back to nursing?” she wondered. Now she hopes she can.