Since August 2021, Ann Yoachim’s mind has felt like a dry-erase board.

Yoachim was once someone who toggled through ideas easily, leading meetings as the director of Tulane University’s Small Center for Collaborative Design. She had a knack for remembering small details about colleagues and all of her students’ names. She loved to cook red beans and rice, go on long, winding road trips and jog to Bayou St. John from her home in New Orleans' 7th Ward.

But after a COVID-19 infection in August, everything changed.

Yoachim, who has a master’s degree in public health and was a Loeb fellow at Harvard’s Graduate School of Design in Cambridge, could no longer find her words. She developed a stutter. In conversation, she had to write down bullet points or everything would disappear. Using brainpower left her feeling like she was under a weighted blanket without the strength to move.

“You had the ideas,” said Yoachim, 46. “And then it’s like a swipe screen … It's like you're talking, and then it's all gone.”

Yoachim struggles with long COVID, a constellation of symptoms ranging from headaches, fatigue, brain fog, loss of taste or smell, dizziness, shortness of breath and muscle pain. A growing body of research is showing it’s causing long-lasting changes in the brain. In Louisiana, where many have been infected, the toll is likely to be significant, though the full impact is difficult to measure.

Treating a novel disease

Dr. Michele Longo, a neurologist at Tulane University, started hearing from patients in summer of 2020. By November, there were so many that she opened a post-COVID clinic. She sees people who are not used to dealing with a debilitating illness — professional athletes, lawyers, teachers and service industry workers, most in their 30s, 40s and 50s.

“People are telling me some days they may not be able to go up the stairs in their own house,” said Longo. A nursery teacher stopped being able to smell dirty diapers. Hospitality workers can’t carry trays.

There are theories about why some people struggle with brain fog and fatigue and others don’t — permanent tissue damage, autoimmune issues and lingering virus in the body are being explored. Because the shape-shifting syndrome has more than 200 symptoms, doctors have to evaluate each patient thoroughly.

First, every patient at Longo’s clinic gets a full assessment to make sure there isn’t another cause for symptoms that is treatable. Sometimes, it appears COVID may have exacerbated an underlying illness, or turned the tides toward an illness that might otherwise never have materialized. Longo has seen new diagnoses of diabetes, neuromuscular diseases or obstructive sleep apnea after COVID.

“In some ways, COVID is the great unmasker of other medical problems,” she said. “It seems to make some conditions that might have been silent surface.”

Next, doctors work with the patient individually to develop a treatment plan that treats the symptoms. Because there is no drug to treat long COVID, they turn to interventions like cognitive therapy to help with focus and memory. A big adjustment for once-healthy people is simply learning they have to pace themselves or set reminders in their phones for tasks they once did on auto-pilot.

It’s not entirely unusual for a virus to trigger illness or uncover disease. Type 1 diabetes, for example, is sometimes set off by a viral infection. But nothing prepared Longo for the impact of COVID. About 10% to 30% of people infected will struggle with long-term symptoms. About half of Longo's practice — 150 people — is made up of long COVID patients.

“That’s thousands of people in our state, millions in our country,” said Dr. Michele Longo, a neurologist at Tulane School of Medicine. “I don't think we're prepared for the possible impact this can have on our workforce. Long COVID is striking people in the prime of their lives, most of them previously healthy.”

What’s happening in the brain

When neurologist Greg Bix recently peered into the brain tissue of a monkey from Tulane National Primate Research Center, he saw all the signs of dementia: inflammation, microbleeds, blood leaking into the brain, neuron damage and interruptions to the blood-brain barrier.

But the monkey had COVID, not dementia. The monkeys, part of a study published in Nature Communications led by Tulane neurologist Tracy Fischer, were healthy prior to infection — and in fact didn’t even have severe symptoms from COVID. It set off alarm bells about what the coronavirus might be capable of when it comes to the human brain.

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“My great concern is that there could be a wave of dementia cases over the next five to 10 years that can be directly traced back to this pandemic,” said Bix.

After seeing what COVID can do to brains, Bix scoffs at the idea that COVID is like the flu, or a seasonal respiratory virus.

“It is a vascular virus,” said Bix, who normally studies dementia but switched to COVID during the pandemic. “It does bad things to blood vessels in our bodies.”

Hope for getting better

The prevailing school of thought among dementia researchers is bleak. Once the damage is done, there’s little hope of reversing the changes that cause symptoms of dementia. It’s unclear if that’s true for COVID.

Bill Phillips, 47, gave up on getting better about three months into debilitating symptoms — nausea, dizziness and diarrhea that caused him to lose about 30 pounds.

“Maybe I won't get well,” he remembers thinking. “That was just an easier mindset than to constantly be disappointed.”

Before getting COVID in March 2020, Phillips, a Metairie resident, was active. But suddenly he’d have to take a two-hour nap if he did so much as mow the lawn.

About a year later, and after the vaccine, something shifted. He started to gain energy. His brain cleared. Now, he wants others to know that there is hope that the fatigue and mental blocks will lift.

“People that went through it, sometimes you feel you're not going to make it out,” said Phillips.

The only sure way to avoid long COVID is to not get infected. Yoachim, for example, was vaccinated. But a handful of studies suggest long COVID is less likely among people who are vaccinated. Generally, vaccinated people have a 50% lower risk of prolonged symptoms than unvaccinated people, according to studies from Israel, the U.K. and the U.S.

Still, it’s not a silver bullet. An estimated 10% of vaccinated people got long COVID in one U.K. analysis.

For Yoachim, who now sees over a half-dozen medical providers, rehabilitative therapy has helped. Like a lot of long COVID patients, finding a doctor like Longo was a game-changer.

“The first thing she said to me was, ‘I want you to know I know what you’re talking about is real and you’re not making it up,’” Yoachim recalled. “I can’t express to you what it meant to be heard in a moment when I was still struggling with so much pain.”

But there is still a sense that COVID is in control.

In March, seven months after her infection and after a lot of improvement, Yoachim had a relapse, finding herself unable to get out of bed once again. She’s doing better, but the constant struggle to find the strength to enjoy the simple things she loves — cooking, reading, taking walks — takes a toll.

“When I say I'm getting better, where I’m coming from is so far from who I am,” said Yoachim. “But there was improvement. I had ideas again.”