Anxiety has always dogged Paula Hayes, a professional sculptor in Athens, NY. That anxiety ramped up when she was diagnosed with epilepsy 11 years ago. Then the coronavirus arrived earlier this year, and Hayes says her anxiety felt like a tsunami. In response to a sense of impending disaster, the 61-year-old hunkered down and took stock of her life, including her health.
In the first weeks of the pandemic, people like Hayes who have neurologic conditions wondered if they were more at risk of severe complications if they contracted the virus. They also worried that pharmacies would run out of their medications and that stress would worsen their condition.
Once the initial panic receded and more information about risk factors became available, a new message emerged: Protect your health, especially if you have a neurologic condition. "I can't overemphasize the importance of wellness, now more than ever," says Barbara Giesser, MD, FAAN, a neurologist at the Pacific Neuroscience Institute in Los Angeles and professor emeritus of clinical neurology at the David Geffen School of Medicine at UCLA.
Christalle Bodiford, 38, has been practicing self-care for years to manage her epilepsy and feels it has prepared her for the current situation. She controls her seizures through a modified ketogenic diet and other healthy habits such as meditating daily, avoiding alcohol, and getting adequate sleep. Even before COVID-19, she wore a mask during flu season and was a bit of a homebody. "With a chronic illness, you already feel isolated to some extent," says Bodiford, who lives in upstate New York. "My life sounds pretty boring, but it gives me the highest quality of health."
For other people with neurologic conditions, the pandemic has been a wake-up call to get in the best shape of their lives. Here's how they are doing it.
Practice safe behaviors. Until a vaccine is developed, take to heart precautions from public health authorities such as the US Centers for Disease Control and Prevention: Wash your hands often, avoid close contact with others, wear a mask when out in public, and contact your doctor if you exhibit symptoms associated with COVID-19, such as fever, dry cough, muscle aches, fatigue, and shortness of breath. "You can't Purell the world," says Jori Fleisher, MD, MSCE, a neurologist and movement disorder specialist at Rush University Medical Center in Chicago, "but you can keep your own spheres safe." She recommends having your groceries delivered to limit exposure in stores. "Delivery services are especially helpful for vulnerable people," says Dr. Fleisher. In the early weeks of the pandemic, when Bodiford's husband would return from grocery shopping, he would leave the bags in the garage and wipe everything with alcohol before bringing it into the house.
Stock up. As soon as she could, Hayes called her doctor to request an extra month's supply of antiseizure medication; she now keeps a two-month allotment on hand. Dr. Fleisher has prescribed 90-day refills (instead of 30 days) for her movement disorder patients and has had the medication delivered by their pharmacies. Plan ahead with groceries as well as medications: Try to keep your pantry well stocked and refrigerate perishables so as to maximize their shelf life.
Savor sleep. Establish a regular time to go to bed and wake up, says Dr. Fleisher. "Not getting up at the usual time or going to bed later every night can make you feel out of sorts," she says. Poor sleep can also make symptoms feel more pronounced or less manageable, especially for patients with confusion or dementia. For Hayes, sleep now serves another purpose. "It helps me process the day," she says. "Sleep helps me work through my feelings of grief, loss, and horror. If I couldn't do that, I would disintegrate."
Victoria Erdel, 22, of Mishawaka, IN, has always known the importance of sleep. "Lack of sleep is my main trigger for migraine," she says. "I don't have a strict bedtime, but I always try to get at least eight hours." She also engages in activities that help her sleep well, like practicing yoga, going for regular walks, and eating healthy foods.
Move more. Be sure to exercise regularly even if you're stuck at home, perhaps with the help of an online option introduced during the pandemic. Phil Horton, a 77-year-old Colorado Springs, CO, resident who has Parkinson's disease and stage 4 kidney disease, downloads workout plans from the exercise classes for people with Parkinson's that he used to attend in person at a local university. He also has participated in classes via livestreaming and rediscovered his step-counting watch, with a goal of 10,000 steps every two days. Horton, a self-described "couch potato" before being diagnosed with Parkinson's disease, says that if he can get motivated to exercise at home during the pandemic, anybody can. "Doing steps around the house can be boring, but variations in laps and counting schemes can help," he says. "It took me two months to work up to my goal."
Leslie Krongold, who has myotonic dystrophy and lives in Northern California, takes walks with her spouse and pops in an exercise DVD most afternoons for a pick-me-up. "I've been doing 20-minute yoga routines, chair dances, or tai chi workouts, which ease boredom and stress," says Krongold, 58.
Some patient organizations are now offering exercise programs, like Power for Parkinson's in Austin, TX, which posts weekly exercise and dance classes on YouTube. All the exercises can be done in a chair and using soup cans as light weights, for those who are up to it. A similar program for people with multiple sclerosis (MS) is available at themsgym.com.
Eat well. Horton has been watching his calories because he isn't burning as many in virtual exercise sessions as he did at the in-person classes. He's careful to get the nutrients he needs and avoid foods that are bad for his kidneys, like potatoes and leafy green vegetables, which are high in potassium. Dr. Giesser encourages patients to use the time to create nutritious home-cooked meals. Lisa Cohen, a 51-year-old with MS who lives in New York City, has stocked up on healthy staples like whole wheat pasta, oatmeal, and frozen vegetables. "If I'm not feeling well or am fatigued, I don't want to spend too much time cooking."
Stay hydrated. Drinking fluids is important, especially for people who are prone to dehydration or who have high blood pressure, says Dr. Fleisher. "Fill a big water bottle and set a timer on your phone that pings every hour or so to remind you to drink some water."
Cultivate calm. People with neurologic conditions are particularly vulnerable to the negative impact of stress. Cohen limits how much she watches the news: "It can really amp your anxiety, and watching the number of coronavirus cases increase makes you feel helpless and nervous." Instead, she does uplifting activities like creating art and learning the guitar.
Krongold says leading a virtual support group helps her manage her anxiety. "We do breath work and focus on what we're grateful for and how we can be of service to others," she explains. Erdel, meanwhile, relies on audiotapes about self-compassion and YouTube videos with soothing sounds. "I don't consider myself someone who beats herself up a lot, but when I get a migraine, I tend to be hard on myself," she says. "These tapes have helped me get through a migraine mentally."
"Meditation helps us become aware of negative thought patterns," says Sarah Mulukutla, MD, MPH, a neurologist in New York City and founder of Mindful Neurology. She recommends apps like Stop, Breathe & Think as well as meditation videos from Love Your Brain, a nonprofit organization geared toward people with traumatic brain injury. "These tools can be very helpful for managing anxiety."
Commune with nature. Spending time outdoors is good for body and soul. Ongoing research indicates that interacting with the natural world promotes recovery, lowers stress, and improves well-being. After spending five weeks indoors and having migraines more frequently, Erdel started taking a half-hour walk every day and now gets fewer migraines. "Being outside has helped me in lots of ways, both emotionally and mentally," she says. For Hayes, building a garden over the past few months has been a godsend. "Our garden has become a microcosm of hope and a symbol that a future is possible," she says. "The rabbits and birds and plants don't know about this pandemic. They embody the rhythm of life."
See your doctor. Telemedicine has been used for years in rural areas and for stroke patients, but the pandemic has pushed it into the mainstream. "Some people are apprehensive [about telehealth] beforehand and then pleasantly surprised," Dr. Fleisher says. Virtual visits allow patients to ask important questions and check in about medication and any new symptoms or changes. Erdel scheduled telehealth therapy sessions for her migraines: "They've helped me prioritize tasks and advocate for myself at work," she says. Medicare and other insurance companies are covering online appointments for now, but be sure to check with your insurance provider, as coverage duration may vary. Telemedicine does require some preparation and a good internet connection. "If all technology fails, I go the old-fashioned route and pick up the telephone and call my patients," says Dr. Fleisher.
Find ways to thrive. "In every crisis, there are opportunities to grow and flourish. Think of this as a time for innovation or renovation," says Tesha Monteith, MD, FAAN, associate professor of neurology at the University of Miami School of Medicine in Florida. "Maybe now you have time to focus on nutrition or getting regular sleep or repairing relationships." Hayes says the pandemic has inspired her work. "I'd like to think of my art as serving a purpose in society and not as an object or a commodity or currency," she says. "I'd like it to have more meaning."
Connect with others. "People have to stop saying 'social distancing' and say 'physical distancing' instead," says Cohen. "It really does a number on people emotionally if they end up isolated." She stays in touch with people by posting videos on Facebook Live. Horton enjoys exercise classes and weekly Zoom calls with members of his support group. "It's important to see familiar faces and keep up with what other people are doing instead of becoming isolated in your house." Many organizations are now providing new and expanded opportunities for patient interaction. The Michael J. Fox Foundation offers virtual events on social media and through webinars featuring a medical expert or community member responding in real time to participants' questions or concerns, says Rachel Dolhun, MD, vice president of medical communications for the foundation. The Brian Grant Foundation, which also supports people with Parkinson's disease, started a monthly virtual book club, says executive director Katrina Kahl. "We always provided a lot of resources online, but now people need engagement as well."
Let go a little. "Trying to control everything is only going to make you more anxious and stressed out," says Bodiford, who considers herself a control freak. "What I'm learning to do is just surrender." She explains how she loosens up: "I check the news in the morning and at night, but I don't look at it during the day. I paint with watercolors or meditate, trying to imagine the sun on my face and the wind in my hair. It makes me feel less trapped. I try to be present in the moment and not worry about what's to come, because the truth is nobody knows." Don't overthink every aspect of daily life, she advises. "And it's important to realize that it isn't just you," Bodiford adds. "This is affecting everyone. Having compassion for yourself and others is a huge part of getting through this."