Dan Kinel of Rochester, NY, was scheduled to celebrate his 50th birthday with his wife in New York City the weekend of March 20. She had intended to surprise him with tickets to a Jerry Seinfeld show. "On March 15, we still planned to go," he says. "By the 17th, it was clear we would not." Medical experts may have seen this coming, he says, "but I felt like the world turned on a dime."
Within a few weeks, COVID-19 had killed a former work colleague and infected a physician Kinel knows. He sheltered in place with his wife and two teenage children. "It turned all our schedules topsy-turvy," says the corporate lawyer, who was diagnosed with Parkinson's disease in 2013. His sleep rhythms and medication schedule suffered. "I had a real uptick in symptoms, especially in the first couple of weeks." Fatigue seemed to set in faster and less predictably than usual. Speaking and multitasking became more difficult. His anxiety level shot up, too, which worsened a leg tremor. "My movement disorders specialist advised me to reduce my workload," Kinel says. Fortunately, his firm was understanding and helped him manage his responsibilities.
Several months into the COVID-19 crisis, Kinel says he feels like the whole country is experiencing post-traumatic stress disorder (PTSD). That topic was explored in a mid-April article in the New England Journal of Medicine, which said the pandemic may cause ongoing psychological and emotional challenges, especially among more vulnerable groups. And neurologists are tracking reports that people who previously had no neuropsychiatric problems may develop them after contracting COVID-19.
The stress has been acute in the neurologic community, where disorders such as Parkinson's disease, amyotrophic lateral sclerosis (ALS), and myasthenia gravis decrease people's pulmonary reserves, boosting the risk of serious complications from COVID-19, says Kenneth L. Tyler, MD, FAAN, endowed professor and chair of neurology at the University of Colorado School of Medicine in Aurora. People with neurologic conditions who take immunomodulatory drugs also are at higher risk.
As the nation looks toward post-pandemic life, people wonder what recovery will look like and how we can heal. "Even as the population eventually gets vaccinated, infections will come down but won't go away completely," says Avindra Nath, MD, FAAN, senior investigator in the section of infections of the nervous system and clinical director at the National Institute of Neurological Disorders and Stroke. He anticipates that COVID-era habits such as avoiding crowds, frequently washing hands, sanitizing surfaces, and meeting people online rather than in person may become fixtures of daily life.
In some ways, people with neurologic conditions may be better prepared for this new world than most. "I've had a neurologic disease all my life and weathered difficult health problems, so I feel I came into this pandemic with well-honed coping and adjustment skills," says Tana Zwart, a freelance media manager and national ambassador for the Muscular Dystrophy Association in Sioux Falls, SD. Her response to COVID-19 was to double down on self-care. "It's critical to avoid getting sick, which can really set us back with our primary disease," she says. "I tried to be smarter about washing hands and disinfecting, and I've become more mindful of what and who is coming in and out of my place."
One of Zwart's two in-home caregivers suspected in mid-April that she'd been exposed to the virus and quit temporarily to protect Zwart. "It got me thinking about whether living independently is the best choice for me at this time," says Zwart.
For Kinel, support from other people with Parkinson's has been an integral part of managing his disease. He used to get together every Wednesday for coffee with friends—one of whom has Parkinson's and another of whom is a Parkinson's caregiver. When COVID-19 made the coffee date impossible, they moved to video chats. "Now we meet Mondays, Wednesdays, and Fridays," Kinel says. "We connect with each other more than ever, and it's great for us to have that mutual support."
Positive Changes
Rethinking individual needs may be another hallmark of post-pandemic life, Dr. Tyler says. "We were used to conveniences and immediate access to things like renewing prescriptions or medical supplies," he says. "Now people are thinking: What should I have on hand for a safety cushion? How would anyone know if I needed assistance? Those questions are now part of self-care."
Kinel has renewed appreciation for how important it is to work with his neurologist when adjusting medication. "I used to make changes on my own," he says. "Now I don't alter the timing or dose without asking my neurologist because doing otherwise can make the situation worse."
Zwart worries about how the economic impact might affect health care policies. "I get in-home care from a company that's funded by Medicaid," she says. "In trying times, I wonder if funding might be redistributed."
Many people have embraced video conferencing via platforms like Zoom for exercise classes, doctor visits, and business gatherings. This trend has raised broad questions about when—or whether—meeting people face-to-face is truly necessary, especially in health care settings. "Telemedicine isn't a new concept, but it wasn't widely used because of numerous regulations and barriers," says neurologist and movement disorders specialist Rachel Dolhun, MD, vice president for medical communications at the Michael J. Fox Foundation for Parkinson's Research. "The coronavirus has accelerated its adoption all over the country."
Congress' first emergency COVID-19 authorization lifted telemedicine limits on Medicare for rural areas, potentially making neurology services more available in remote places that previously had no access to them. Privacy obstacles to using readily available technologies also were loosened. "I expect these trends to persist," Dr. Tyler says.
Zwart hopes that recently adopted work-from-home policies and increased reliance on video conferencing could open doors for her and other people with disabilities. "Businesses are waking up to the fact that working from home is feasible, and there's an untapped group of people like me who can work remotely," she says. "I'm freelancing this year because the nonprofit I worked for closed. In the past, it was difficult to find businesses willing to work with you if you only worked remotely."
Helping People Heal
As we emerge from the shutdowns, experts recommend keeping a structured daily routine of eating, sleeping, doing chores, contacting others, and exercising to rebuild a sense of normalcy. Another way to start the healing process is to connect with nature, says Alison Miller, PhD, developmental psychologist and associate professor at the University of Michigan School of Public Health. "Research shows that even if you're in a hospital bed and can look out the window at a tree, recovery and healing are faster. It's a way to reconnect with the world that's not all about the coronavirus."
Pandemic habits like keeping your distance from others, sheltering at home, and reading or watching virus-related news may lead to depression and grief, says Ken Yeager, PhD, director of the Stress, Trauma, and Resilience Program at the Ohio State University Wexner Medical Center in Columbus. The arbitrary impact of the virus upsets our sense of a just world. "People tend to believe that if you do right and work hard, good things happen," Dr. Yeager says. "This crisis has been a big data dump to the contrary. It doesn't matter how good you are, the virus is only interested in your cells."
These negative emotions, along with fear, hurt, anger, and loss, are normal and should fade, Dr. Yeager says. What won't help is blaming yourself, which he says people tend to do when they look back on troubling events and find it difficult to process the pain they feel. He encourages people to challenge themselves or others when they say or hear phrases like "I should have...," "If only...," or "It's all my fault."
Instead of focusing on your pre-pandemic life as something you've lost, focus on positive elements: You've reconnected with family or figured out better self-care plans, says Dr. Miller. "You'll have an easier time moving forward."
Helping Society Heal
In recent months, "We're all in this together" has become a rallying catchphrase. Likewise, we're all recovering together, says Dr. Miller. "This crisis has really called attention to the need for societal support," she says.
A silver lining may be increased social bonding despite physical separation. "My hope is that people will continue to build and maintain connections as well as care for others," says Kinel, who makes calls for a local social services organization to check in on a higher-risk person who lives alone.
Kinel will do more advocacy for Parkinson's research. "I try to give back where my skills, experience, and energy allow," he says. "I plan to stay as active as I can. And I'll also make an effort to hug more friends and family when it's appropriate—something that's not possible on Zoom."
Zwart also plans to continue her advocacy through the Muscular Dystrophy Association while finding ways to support others in small, personal ways. "I've been writing letters to people," Zwart says. "I don't know why, but it seems like the right thing to do just because it's nice to get mail."
Small gestures of kindness can propagate, Dr. Yeager says. For example, he would buy coffee for customers behind him at a drive-through or lunch for diners in the commissary line at the hospital where he works and noticed that others followed suit. "People want to give back," he says.
During a crisis the deepest meaning can sometimes be found in the simplest pleasures. "Appreciate the small things," Dr. Miller says. "Sipping coffee, sleeping, going for a walk."
Showing appreciation for essential workers like truck drivers, sanitation crews, and supermarket employees can have a broad impact. "Thanking the quiet teenager who bags your groceries may affect how that person thinks of the world throughout life," Dr. Yeager says. "This pandemic experience may influence a new generation of leaders." Beyond that, he adds, positive interactions help you feel better, too.
Many people are doing what they can to support struggling businesses and organizations. Online services like GiveandGetLocal.com make it easy to buy gift cards for stores and restaurants. Readers can buy books from local bookstores through services like IndieBound.org and Bookshop.org. And charitable groups will need funding as donations have dried up.
Recovery may offer a chance to reset our interactions with the world and one another, Dr. Yeager says. "Somebody hit the pause button on our lives, and when they hit play, we'll need to rethink how we respond and what we do with our lives," he says.
Kinel says he felt the same loss of control during the COVID-19 outbreak that he did when he was diagnosed with Parkinson's. "Even when you lack control, though, you can still be positive," he says. "I'm even more appreciative of my ties with friends, my ability to connect through technology, my comfortable home, my loving family, and the extended community of people who care about me."
Infection and Immunity
The coronavirus was called "novel" because it's never been seen before and many of its long-term effects remain unknown, including whether people who are infected and recover are subsequently immune to it. "Some models suggest lifelong immunity, and others suggest it may wane after several years," says Kenneth L. Tyler, MD, FAAN, neurology department chair at the University of Colorado School of Medicine in Aurora.
Reports of people who have recovered from COVID-19 infections and tested negative for the virus but later tested positive have raised concerns that people could become reinfected. But it's too early to know what's happening in those cases, says Avindra Nath, MD, FAAN, senior investigator in infections of the nervous system and clinical director at the National Institute of Neurological Disorders and Stroke. "It's quite possible those people were never really clear of the infection in the first place," he says.
Imperfect tests may contribute to false results in some cases. And people who have contracted other viruses sometimes continue shedding those defective viruses for months without being infectious. It will take widespread use of reliable and accurate antibody blood tests to provide answers on immunity and reinfection with COVID, Dr. Tyler says.
Researchers also will be studying the long-term effects in people who were previously infected. "The vast majority of cases are still mildly symptomatic," Dr. Nath says. Those with a neurologic disease that compromises breathing, such as amyotrophic lateral sclerosis (ALS), may have a harder time. "We don't know the degree of pulmonary recovery, but it's obviously more challenging if you have a disease like ALS where your reserve is already reduced," Dr. Tyler says.
Since some COVID-19 patients experience loss of smell and taste, the virus may have neurologic effects. Strokes, headaches, dizziness, muscle aches, and lack of muscle control have been reported.
"I suspect we will continue to see neurologic symptoms associated with COVID-19," Dr. Tyler says. "But it's still primarily a pulmonary infection."