By Kathy Morgenstern
Meet Ken Todd, 53, an Upper West Sider and “long COVID-19” sufferer, or “long hauler,” who is unable to walk comfortably to Central Park from his apartment near Riverside Drive.
Ken was a marathoner before he contracted a mild case of COVID-19 in January 2021, and had always trained in Central Park, but now he can hardly get there.
“Central Park is a little too far,” he says. “Riverside Park has become my new favorite park since it is less than a block away.”
Estimates say that anywhere from “10% to 30% of people might experience long COVID after recovering [from COVID-19]—even if they weren’t very sick in the first place,” according to the American Medical Association.
The AMA defines Long Covid as “a wide range of new, returning or ongoing health problems people may experience more than four weeks after being first infected with SARS-CoV-2. Even people who did not have any symptoms can experience long COVID, which can present as different types and combinations of health problems and can range in lengths of time, according to the Centers for Disease Control and Prevention (CDC).”
“Older people and people with many serious medical conditions are the most likely to experience lingering COVID-19 symptoms,” adds the Mayo Clinic, “but even young, otherwise healthy people can feel unwell for weeks to months after infection.”
Some common signs and symptoms that can linger over time or appear include: fatigue; shortness of breath or difficulty breathing; cough; joint pain; chest pain; memory, concentration or sleep problems; muscle pain or headache; fast or pounding heartbeat; loss of smell or taste; depression or anxiety; fever; dizziness when you stand; worsened symptoms after physical or mental activities.
Dr. Irwin Redlener is the founding Director of the Pandemic Resource and Response Initiative (PRRI) for the National Center for Disaster Preparedness at the Earth Institute of Columbia University. He is also suffering from Long COVID.
Dr. Redlener, who is a public health analyst for MSNBC, has been on the inside watching and learning about COVID-19 since it started infecting people in New York.
“Doctors who are taking care of patients with long COVID are treating them symptom by symptom,” he said, in a telephone interview. “We are at a phase of our understanding of long COVID that we don’t know what the causes of these symptoms are, so we’re treating the symptoms themselves as opposed to the underlying pathology. This is what makes it challenging now. Patients are really being affected and they are looking for answers.”
Unable to work at the beginning of his long COVID journey, Ken was placed on disability for six months. There were no answers as to why he now had to live with “Vestibular dysfunction,” a disturbance of the body’s balance system. After working with many doctors and specialists, Ken is back to a limited work schedule. He works from home four days a week and his routine includes short naps during the day in order to keep up with his workload.
“The biggest hurdle I have to overcome is I can only look at the computer screen for a half-hour or 45 minutes before I start feeling sick and have to stop,” Ken says.
Ken’s physician at Weill Cornell Medicine Primary Care on the Upper West Side suggested that he call Mount Sinai’s Post Covid Care Clinic, which had just opened for those suffering from post-covid symptoms (there was no name for long COVID yet). In April 2021, Ken was referred to a physical therapist at Spear Physical Therapy at 235 West 75th Street (Broadway and WEA), closer to where he lived.
Spear had partnered with Mount Sinai’s Post Covid Care Clinic and started taking the overflow of patients that Mount Sinai couldn’t see back in May of 2020. Eric Finkelstein, Assistant Clinical Director of Spear, usually had a caseload filled with patients suffering from shoulder or back injuries. Since taking in patients from Mount Sinai, he sees 6-8 patients struggling with long COVID symptoms. He says he has readjusted what he had known in order to treat his new patients.
“The spectrum is so variable, and everyone’s symptoms were and are a little different,” Finkelstein said. “A lot of people needed reassurance.”
In January 2021, Finkelstein started working with a man, whose identity he protected, who he ultimately helped get back to a “new normal,” he says. The client, a Ph.D. candidate, came to him with “brain fog” and something that sounded similar to what Ken is still suffering from, but in this case, the patient could not read for longer than 30 minutes.
Finkelstein started treating these long COVID symptoms as if his patient had a concussion. The client was discharged in the early summer and is now able to read up to 4-6 hours at a time. Finkelstein submitted this case study to the Journal of Orthopaedic & Sports Physical Therapy (JOSPT), where it was accepted for publication. His hope is that more physical therapists will become educated about long COVID symptoms and treatment.
On the phone, Ken sounds upbeat, but lets WSR know that just talking for a short while takes a lot out of him. He is trying to be positive, he says, but is unsure about what the future holds. He is also trying not to catch COVID-19 again by meeting friends outside and wearing a mask. He is still going to physical therapy twice a week, and has managed to shop during non-peak hours at both Trader Joe’s and Fairway.
Ken has found a purpose as well: sharing his story with media outlets that are still finding out about long COVID and how it can affect so much of a sufferer’s life. He has been interviewed by Marketplace.org and CNBC’s Make It, telling reporters that getting better after contracting long COVID is “like a full-time job.”
“Up to this point, we have been measuring the pandemic in terms of cases, hospitalizations, and deaths,” Ken concludes. “However, Long COVID — in its many different forms — is a life-changing disability that impacts people’s ability to work, exercise, carry out everyday life activities, and enjoy leisure time. In order to grasp the true impact of COVID, we need to also consider the effect of disability from long COVID on our society and economy.”