KANSAS CITY, Mo. — A University Health occupational therapist says communities like Kansas City need to keep talking about long COVID.
“We need to continue this conversation about long COVID, even if people are tired of talking about it,” Jenna Hopkins, an occupational therapist at University Health said.
Hopkins has worked with about 150 Long Covid patients at University Health since March of 2021.
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“I say I'm one, one step away from standing on the street corner talking about this because people don't know enough about it and it does impact so many, so many individuals,” Hopkins said.
Hopkins said red flags related to long COVID include:
- Fatigue that doesn’t revolve with rest
- Any kind of neurological symptoms that are unexplained.
- Vertigo/tremors
- A big amount of brain fog
“It's a mass disabling event, that's what COVID is doing as it's disabling a lot of people,” Hopkins said.
Hopkins has been working with her patient, Sophie Day, for a year.
Day, a Midtown resident, has lived with long COVID for the past two years.
“Sophie is one of those people that looks very young, looks very healthy, but she is disabled,” Hopkins said.
Day said she contracted COVID in July of 2022.
“When people ask what are the things that change the most, everything the answer is everything,” Day said.
Day says since she started seeing Hopkins, things have been "going significantly better.
“Part of the first phase of recovery was learning that all kinds of things I used to take for granted were now activities that really wore me out spending," Day said.
Hopkins remembers first visiting with Day after Day fainted.
“She broke a collarbone," Hopkins said. "She'd been through the wringer and these were all as a result of her long COVID symptoms.”
Hopkins said more awareness needs to surround long COVID and how to best support people.
“If you know people that have kind of these hidden disabilities, even though they look young and healthy, it's easier for you to recognize the mental toll as well as the physical toll that it takes on other people,” Hopkins said.
Day was an athlete, an ultra ultra-marathon runner.
“It's fine with me if running isn’t going to be a thing I do anymore, but I would like to walk places,” Day said. “Before I got sick, I was really active I was cycling to and from work, I was traveling a ton for my job I was a very avid runner I was a weightlifter,” she said.
She and her husband Jeremy are navigating their health journey together.
“I look pretty healthy; I’m in a wheelchair right now but most of the time I am up and about if I was out in public, you might assume I was an able-bodied person,” Day said.
Hopkins is working on how to best manage her fatigue.
“So this is something that's really difficult to rehab,” she said. “Unfortunately, people with hypermobility are about 30%, at increased risk for long COVID. We always have to find the goldilocks zone of not too much and not too little. It's not, more repetitions are better. We're trying to function within that ‘just right’ zone of activity. If I do too much exercise with her, then she might not be able to work the next day. She might not be able to leave her apartment the next day. It's more about spreading those activities out in a way that is really helpful where she again is able to prioritize and do those activities, she really needs to.”
Hopkins says a Canadian study found if patient had COVID three times, there’s up to a 38% chance the patient will suffer from long COVID symptoms.
The progress Day and Hopkins have made over a year is proving successful, allowing Day to work longer hours, travel a bit for work and spend more time engaged.
“More often than not, I was experiencing symptoms like migraines, nausea, dizziness, brain fog debilitating fatigue,” she said. “I need to take a nap in the middle of the day every day to get through the day I’m now experiencing those systems far less often.”
Hopkins said she’s aware people may be tired of talking about COVID in general.
“I think COVID, for a lot of people, has been life-altering, and I know that people are tired of talking about it,” she said. “But this is continuing to impact people every single day.”
Day wants to also increase support for people living with long COVID.
“For the people around them to believe them, validate them and support them,” Day said.
Hopkins is also focused on spreading the word across the medical field.
“I'm trying to also educate other health care professionals and other people,” she said.
On July 10, University Health - Truman Campus, is holding its first-ever Long COVID Support Group. They say all are welcome, with no insurance needed. The group meets from 4:30-6 p.m. if you have post-viral COVID symptoms. For more information, you can email longcovidkc@gmail.com
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