‘You are not your disease’: COVID-19 long haulers find hope in recovery program

Jenny Berz was infected with the coronavirus in March after returning from a trip to Hawaii.
The 50-year-old wife and mother from Boston never received a positive test for COVID-19, but she had all the standard symptoms: fever, chills, body aches and shortness of breath.

A few days later, her husband got sick and tested positive. Then her kids began exhibiting symptoms, although the doctor wouldn’t test them.

They all quarantined at home, hoping to get better in a few weeks. Though Berz’s husband and children recovered, she got worse.

Throughout her illness she experienced gastrointestinal, cognitive and pulmonary symptoms. She had asthma attacks, lost her sense of smell and had a burning sensation in her arms, also known as neuropathy.

“Somewhere along the way, I had everything,” she said.
Berz is one of the many so-called COVID-19 long haulers, who suffer through symptoms months after their initial diagnosis. Many fear they will never recover.
A new treatment program originally intended for geriatric patients has showed promising results for these long-suffering COVID-19 patients.
Noah Greenspan, a cardiopulmonary physical therapist and founder of the Pulmonary Wellness Foundation in New York City, said about 750 patients have enrolled in his COVID Bootcamp program and many report progress – including Berz.

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Although the program was created around patients older than 70, Greenspan quickly realized it was too vigorous for his long haulers, mostly patients in their 30s, 40s and 50s.
“It’s a very delicate balancing act,” he said. “We had to come up with a very specialized rehab and learn fast what’s detrimental to people.”
Bootcamp patients are asked to walk for four minutes, in two two-minute intervals, increasing a minute each day. Before the program, Berz could barely make it to her mailbox. Now she walks 12 minutes a day.
The program incorporates breathing exercises and weight training, which could be as simple as lifting an arm over the head for a minute.
“Little by little, it’s like putting together a jigsaw puzzle and disarming a bomb at the same time,” Greenspan said. “We put together things so that we see the entire picture … but we want to make sure we don’t cut the wrong wire.”

Doing so could put a patient in bed for the whole day.

Joel Hough, 56, of Northern Virginia, still suffers from intense fatigue after getting sick in late April. He used to ride his bike every day, but now after riding just two hours at 30% of his original speed and intensity, he feels like he got hit by a truck.

“You have to meter yourself and then wait a day or two and then see how good or bad you feel,” he said. “You can feel so great, but you’re actually hurting yourself.”

Although patients such as Hough and Berz still experience symptoms and can’t function at their full capacity, thanks to the boot camp, they have hope. They encourage other long haulers to not give up.

Greenspan is grateful he can help his patients get back a slice of their former life, even if it’s just an extra minute on the treadmill.

“When somebody is diagnosed with a chronic disease … their lives become the disease, or the disease becomes their lives,” he said. “You are not your disease.”

Follow Adrianna Rodriguez on Twitter: @AdriannaUSAT.

Health and patient safety coverage at USA TODAY is made possible in part by a grant from the Masimo Foundation for Ethics, Innovation and Competition in Healthcare. The Masimo Foundation does not provide editorial input.

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