Madonna helping patients with long COVID improve daily lives

The COVID-19 pandemic might not be raging like it once was, but the virus is still having an impact on many Nebraskans, including one local 73-year-old.

Mary Schulte is still fighting against long COVID, where symptoms persist for many months following the onset of an infection.

“(Symptoms) come and go,” Schulte said. “The worst ones, of course, are the brain fog, the problem with concentration, word-finding difficulty … and horrible fatigue. That just never goes away.”

Schulte is far from alone in this battle — a June pulse survey from the Centers for Disease Control and Prevention estimated that 30% of Nebraskans who have had COVID-19 have had some form of long COVID.

Since February, Schulte has been at Madonna Rehabilitation Hospital's new model system of post-COVID rehabilitation care. The model system combines clinical programming, research, mental health services and education to address the long-term impacts of COVID-19.

“Our program is driven by helping to restore the minds, the bodies and the spirits of these individuals and helping them to get back to being able to do what they want to be able to do,” said Dr. Judith Burnfield, vice president of research at Madonna’s Institute for Rehabilitation Science and Engineering.

In January 2022, the $7.5 million model system was brought to the Lincoln campus through public and private grants. Burnfield said the money is being used not only for research and education of the program, but for technology to help their patients.

Senaptec is one of the machines that is used to work on peripheral visions. During Schulte’s therapy session on Wednesday, she was instructed to sit down in front of the touchscreen and select icons as they appeared on the screens. Schulte’s therapy also included a Vectogram with polarized glasses to develop and strengthen simultaneous vision.

Before the pandemic, Schulte had never taken medicine or used a cane. She was first diagnosed with COVID-19 in 2020 and had severe symptoms.

“The first time was horrible because it was that god-awful coughing that people described,” Schulte said.

A year later, she was diagnosed again with a more mild case, but one that left her with long-term symptoms. Her luck continued to go downhill as she was then diagnosed with breast cancer before having COVID-19 for a third time last year.

“It’s a year and a half, and I don’t see an end in sight,” Schulte said. “But, because of Madonna, I’ve seen improvement. I have made improvements and the goal is for me not to backslide.”

Jade Bertsch, a physical therapist, has been working with Schulte for six months.

“The things that she struggles with are very common for what other people are struggling with, too,” Bertsch said. “The progress isn’t fast, but it’s steady and she’s a very hard worker.”

Schulte is one of the nearly 1,000 individuals who have been rehabilitating from COVID-19 challenges at Madonna. For Schulte, her experience has given her hope for the future.

“I truly was floating down to an abyss before I came here,” Schulte said. “In many ways, they’ve saved me and brought me back.”

At Madonna, Schulte has been learning numerous ways to help improve her memory, brain fog and balance through language, cognitive and physical therapy.

“I can tell that there have been improvements, and it’s not just the physical improvements or the mental improvements,” Schulte said. “When I first started, I could no longer drive on the highway and I couldn’t figure out why. I thought I was losing my mind.”

That's a common theme among patients with long COVID, Burnfield said.

"They feel as though maybe they’re going crazy because nobody has been able to really pull together that picture of what’s happening for them,” Burnfield said. “To be able to understand and to learn and come to a place that knows long COVID and knows how to help that person rehabilitate has been a huge relief for many of these individuals.”

There are three key aspects to Madonna’s model system of care: clinical programming to address needs, community awareness and research.

“COVID is such a new disease, we don’t yet know as a country what are the best practices in being able to help people rehabilitate from long COVID,” Burnfield said. “One of the things that we’re doing is also starting to advance the science of understanding the impact of specific treatments."

Madonna also has an online self-assessment to help individuals identify symptoms that are consistent with long COVID. The questionnaire only takes a few minutes and can be found at therapyplus.madonna.org/programs/post-covid-rehabilitation-clinic.

After the form is completed, Burnfield said to print off the information to bring to a physician to help start the conversation. The current wait time is under a month from the time a referral is sent in to when individuals have their first visit.

As for Schulte, her therapy appointments are set to end this fall and she’s accepted that she will never truly be back to the way she was before having COVID-19.

“I know that there is not going to be a cure in my lifetime because of my age, and that’s OK,” Schulte said. “As long as there are improvements, and there have been improvements.”

For now, she’s focusing on the small victories and enjoying the simple things in life.

“I’m finally able to go back to reading,” Schulte said. “I used to read one book a week, and then COVID ripped that away.”

Schulte said she isn’t looking forward to ending her therapy at Madonna and she will miss the staff.

“I admire each and every one of them to do this kind of work because we are not the easiest people,” Schulte said. “Broken people are not the easiest people to fix and so I feel very fortunate.”