Life with Long COVID: “This could have happened to me, too.”

by Jann Gerrit Ohlendorf at January 12, 2023

The Caspar Clinic’s treatment concept explained with three patient stories

Over three years have passed since the first reports surfaced of a novel virus in China. First discovered by Chinese doctors in December 2019 and later named COVID-19, this deadly virus quickly spread across the globe. These days, most of us who experience a COVID-19 infection can expect life to quickly return back to normal. Unfortunately, this isn’t the case for everyone. Today, more and more people are experiencing a very slow recovery from the coronavirus, and some grapple with serious after-effects over a long period of time – a disease known as Long COVID. Given this, it’s not uncommon for rehabilitation and Long COVID therapy to overlap.

Here, our therapist and team leader Svenja Suhr explains what Long COVID therapy looks like for three different patients at the Caspar Clinic, each of whom has a different course of treatment. As with other treatment concepts, the strength of combined care lies in the personal support provided by our Caspar Clinic medical staff, alongside the content in the Caspar app.

To protect our patients’ privacy, some names and personal details have been changed.

Svenja Suhr

Svenja Suhr

Svenja Suhr knows all too well how common it is even for young, active people to become afflicted with Long COVID. For these folks, even traveling the short distance to the grocery store may prove difficult. As an experienced long-distance runner who recently competed in the Berlin and Chicago marathons, she knows first-hand how important an active lifestyle can be. This makes her all the more committed to supporting her patients in their recovery. Over the course of many months, she helps and guides them on their road to recovery, improving their mental and physical health, and a return to actively shaping their own lives.

Johanna K: The marathon runner with iron will

It wasn't so long ago that Johanna K. chose to take the stairs rather than the elevator. For this 30-something patient, fitness has always been an important part of life — she even used to run half marathons. Then came the coronavirus. While her first infection in the spring of 2021 didn’t throw her too far off track, marathons were out of the question for a while. Even when she caught the virus a second time that December, she was still focused on getting back into intensive training soon. But after her third infection in April of 2022, running a half-marathon started to feel like a pipe dream. At that point, she struggled to express her needs, always searching for the right words that didn’t come. And when they did, they were jumbled and choppy. Johanna has been out of work for some time. The good news is that thanks to her fierce determination to compete in a half marathon again, she is slowly recovering and becoming more active day by day. Today, she has more confidence than at the start of her illness, and can walk 1-2 kilometers again (depending on the day).

Johanna is accompanied on her journey by both Caspar Clinic and the Klinik am Haussee. As a participant in a special treatment program, her periods in the rehabilitation clinic are alternated with phases of digitally supported self-training at home. During these phases, therapists from the Caspar Clinic are at her side. The treatment concept also shows how persistent Long COVID can be. The “Interdisciplinary, internal medicine-neurology-psychosomatic concept for patients who have suffered a SARS-CoV-2 infection," as it is officially called, is designed to roll out over a long period of time. In concrete terms, here’s what this looks like for Johanna: She starts with a 21-day stay in the clinic. This is followed by six months of interval care with the Caspar Clinic. After that, she goes back to the rehab clinic for seven days, which is followed by six months of interval care by the Caspar Clinic. And finally, after a third seven-day in-person phase at the clinic, she may continue with tele-rehab aftercare.

Svenja Suhr is impressed by her patient’s strong resolve. Precisely because the therapist is also a passionate runner, she can empathize strongly with Johanna. “I feel as if this could have just as easily happened to me,” she explains. Suhr says that she admires Johanna’s gumption, and her determination to improve step by step, day by day.

And as for Johanna, she’s positive that she will participate in a half marathon someday in the future.

Klaus E., who longs to speak in front of a crowd again

Before Corona threw him off track, Klaus E. was a skilled speaker. He routinely gave lectures to various associations, traveled often, and enjoyed his life. But his coronavirus infection changed everything overnight. The aftermath of this infection can be seen in the cramped muscles of Klaus's face. Articulating himself is extremely difficult, and his gait is unsteady — he suffers from balance problems. Following his COVID-19 infection, he was also diagnosed with a heart problem, meaning he has to pay particular attention to his health.

Today, exercise therapy helps Klaus train his sense of balance. At the same time, it’s important for his therapist to keep an eye on his pulse. Svenja Suhr strikes this balance — continually motivating Klaus while reminding him not to overexert himself. "Pulse control is particularly important for Klaus E. — anything higher than 100 is too much right now." Klaus E. is determined to move forward – he wants to get back on stage and return to his work, which he has currently put on hold. At the Caspar Clinic, Jennifer Graubner — one of our speech therapists — supports him with speech and breathing therapy. "The multidisciplinary makeup of our team helps us a great deal when accompanying Long COVID therapies. After all, many Long COVID patients suffer from a whole bundle of complications," says Suhr. Nevertheless, Klaus E. has his sights set on one goal: getting back on stage as soon as possible.

Alina M., who needs to grapple with new limits

Alina M. is a prime example of how the path to a more active life can be laced with setbacks, even if Long COVID therapy generally proves successful over the long term. With a complex condition like this, certain tasks can easily overwhelm the body. The now-long walk to the supermarket the other day was, as Alina M. told Suhr, simply one challenge too many. “I paid for it immediately,” she said. Afterwards, Alina felt terrible and needed many days to recover. Despite therapy, her physical performance stagnated.

This story reveals just a small glimpse into the profound disappointment that sets in for many Long COVID sufferers as they come to terms with the fact that their bodies now set limits for them that cannot be shifted. "Relapses after physical exertion are one of the more painful experiences that many Long COVID sufferers have to grapple with," says Suhr. Given this, it's no wonder that the severe physical impairment is often accompanied by psychological stress.

But Svenja Suhr also knows a number of therapeutic exercises that offer some relief from the symptoms: A mix of stretching, breathing exercises, and autogenic training helps Alina cope with the effects of Long COVID. And there are also successes: “Alina’s cognitive performance has already improved significantly as part of our care," says the therapist. Alina's goal? Well, she wants to be able to write easily again with her right hand. And she’d like to tackle her fear of the subway stairs. Because despite Long COVID, Alina still has a lot planned for her life.