Prior to the night in November 2017 when Jane Percy had a stroke, she never thought of herself as an anxious person. Indeed, the wellness coach considered herself adept at helping others handle their stress. The stroke, which occurred while Percy was asleep, paralyzed her left side and affected her emotional equilibrium. Although Percy made what her doctor deemed a complete recovery, she began feeling anxious. "For the first time, I couldn't stop focusing on my heart racing, and a month after the stroke I had my first panic attack."
That started a cycle of constant worrying. "My doctors told me that having one stroke increases my risk of having another one," Percy says. "If that isn't a setup for feeling vulnerable, I don't know what is." The COVID-19 pandemic has intensified her stress. "Now there's a persistent sense of dread and anxiety that we're all feeling—along with grief for losing our way of life," says Percy, 73, who lives in Stonington, CT.
It's natural to feel anxious after a stroke, or after a diagnosis of a chronic neurologic condition like multiple sclerosis (MS) or Parkinson's disease, where the course can be uncertain and possibly debilitating. But when the whole world is experiencing a collective surge of anxiety about their health and the health of loved ones, it can add an emotional burden.
"As someone with MS, I've had to get used to coping with the unknowns of my disease," says Ali Salama, 46, a former publishing executive in New York City who was diagnosed a decade ago. "But at least I've been able to rely on medicine and treatments to help keep my symptoms under control. This global pandemic has made me more anxious than usual. It's definitely triggered insomnia and stress eating."
She's also worried about her vulnerability to the virus. Because of the disease-modifying therapies she takes, her immune system is compromised. "That makes me concerned about how my body would handle the coronavirus."
Many of us are distressed right now, but there's a difference between normal concern and worry that interferes with sleep or with the ability to work or focus, to enjoy food, or to find moments of happiness. "It's a matter of degree," says Anjail Z. Sharrief, MD, associate professor of neurology at the McGovern Medical School at UTHealth in Houston.
"After a stroke, most people are concerned about having another one," says Dr. Sharrief, who co-authored a 2019 study in the Journal of Stroke and Cerebrovascular Diseases that found that nearly 21 percent of stroke survivors experienced symptoms of moderate to severe anxiety. "But when patients tell me they can't sleep because they're afraid they'll have another stroke, or they're hesitant to engage in activities, that's when it needs to be addressed."
Anxiety also can be caused by the disease itself, which may affect brain chemistry and bring about emotional changes. "With Parkinson's, at least a third of patients will experience anxiety, depression, or both," says Irene Richard, MD, FAAN, professor of neurology and psychiatry at the University of Rochester School of Medicine and Dentistry in New York. "We believe it's a result of the underlying disease, which disrupts brain circuitry and neurochemistry." In fact, she says, increased anxiety is a common early symptom of Parkinson's disease. "Parkinson's disease is labeled a movement disorder, but it affects every domain of brain function, including cognition and emotions," Dr. Richard says.
Sheryl Jedlinski, a freelance journalist in Palatine, IL, has always been a worrier. When she was diagnosed with Parkinson's disease in 1997 at age 44, her anxiety only worsened. "I was obsessed with thinking about what was going to happen to me and if I would live to see my grandchildren," she says. Her neurologist enrolled her in a few clinical trials involving exercise and prescribed medication with anti-anxiety properties. "Then I started meeting people with Parkinson's who could see a future with it, and I began to realize that it was a manageable disease." She also got involved in advocacy for Parkinson's research, which helped distract from her fears.
Don't Ignore Anxiety
Although poststroke anxiety is common and associated with worse health outcomes and higher mortality rates, it's often undertreated. "After a patient has a stroke, doctors usually focus on whether the person can walk or see," says Dr. Sharrief. "But even patients who recover all neurologic function may still worry, because they don't function as well as they did before."
Percy found that she kept comparing her recovered self with her prestroke self. "After my stroke, I struggled to dress myself. Anything that involved using both hands and balancing was a challenge," she says. "With every task or activity, I'd hear a little observer in my head whispering, 'You used to be able to do that.'" That whisper was like a constant feedback loop that was exhausting and stressful. And it's become louder due to COVID-19.
Yet the pandemic could have a positive impact for neurologic patients in one respect, Dr. Sharrief believes. "Health care providers are focusing more on patient-centered outcomes like quality of life and emotional state, including anxiety. Because of that, we may come up with more helpful and effective interventions."
With many activities now being conducted online instead of in person, "there may be an upside to this crisis," adds Dr. Richard. "Many people with neurologic issues experience anxiety about going out or being in a group. For them, using this opportunity to participate in virtual activities could end up being a good thing, even when the pandemic is over."
During the coronavirus shutdown, many people with neurologic conditions worry about doctors' appointments or medication refills. "We are doing phone calls and telemedicine visits via video, and we can arrange to get medications to patients," says Dr. Richard.
Jedlinski says she's been a nervous wreck since the pandemic began. "The unpredictability of the virus makes me panic," she says. To settle her fears, she employs several strategies: She checks the news only one hour a day, calls friends regularly, and looks for humor in every situation. She also writes about her experiences on her blog, LivingWellWithParkinsonsDisease.com. "My husband also helps," she says. "He's a very calming person."
Percy has shared her worries with her physician and has been managing her anxiety in a variety of ways. She occasionally takes a very low dose of the benzodiazepine lorazepam (Ativan) when she's feeling overwhelmed, and she practices qigong, a martial art that combines gentle movements with breathing exercises and mindfulness.
Basic breathing exercises are also useful: inhaling through the nose for a count of four, holding for four, and exhaling for a count of eight through the mouth. "Sometimes when I do my mindful breathing, I imagine peaceful music in my head, which I find soothing," says Percy, who also does short high-intensity interval workouts. "Besides improving my endurance, they really help with my mood."
She loves taking walks, too. But what benefits Percy most is thinking about what she's grateful for—even at this time. "Having a 'gratitude attitude' was especially important in my early days of recovery," she says. "And with COVID-19, it still is."
Wise Ways to Whittle Away Worries
Anxiety, whether it's caused by a neurologic condition or the COVID-19 pandemic or both, is nothing to be ashamed of. In many cases, anxiety can be caused by the neurologic disease. Tell your doctor when you experience symptoms such as feelings of nervousness, tension, or a sense of impending danger; rapid breathing; trouble sleeping or concentrating; or gastrointestinal problems.
"It's important that doctors look for these symptoms and patients bring them up," says Anjail Z. Sharrief, MD, associate professor of neurology at the McGovern Medical School at UTHealth in Houston. "Even if our stroke patients can walk, talk, and see, if they are too anxious to work, socialize, or interact with loved ones, they end up feeling miserable."
Treating anxiety often requires a customized, multipronged plan. These are possible approaches to discuss with your physician.
Medication. Your doctor may prescribe an antidepressant—such as citalopram (Celexa), fluoxetine (Prozac, Sarafem), or venlafaxine (Effexor)—or a benzodiazepine like lorazepam (Ativan), which can provide temporary relief during especially stressful situations. Be careful about starting benzodiazepines, because you can develop a tolerance for these sedatives and they can become addictive. They also can cause delirium and poor balance in older people.
Not all medications are appropriate for all neurologic conditions. "For a long time, doctors assumed that drugs like venlafaxine and paroxetine (Paxil) would work well for anxiety in people with Parkinson's disease since they are used to treat both depression and anxiety in the general population," says Irene Richard, MD, FAAN, professor of neurology and psychiatry at the University of Rochester School of Medicine and Dentistry in New York. "We did a large study of these drugs for Parkinson's patients with depression and found that these medications resulted in improvement in feelings of depression. However, we were surprised to see that they didn't do much for anxiety."
Buspirone (Buspar), another drug widely used to treat anxiety, may also not be the best choice for patients with Parkinson's. In a small pilot study by Dr. Richard and her colleagues of Parkinson's patients taking buspirone, many participants were unable to complete the trial due to the drug's side effects, including a worsening of Parkinson's symptoms.
Therapy. Talking to a therapist about your fears may help ease them. Cognitive behavioral therapy (CBT), a type of short-term talk therapy designed to alter unhealthy emotional responses to stimuli by changing patients' thoughts and behaviors, is also effective, says Dr. Sharrief. For instance, when feeling anxious, patients might learn to focus attention elsewhere by calling a friend, listening to upbeat music, taking a walk, or engaging in a pleasurable activity like cooking. While medications may work faster than therapy, CBT may be more sustainable, which is why some patients opt for both, says Dr. Sharrief.
Exercise.Regular physical activity has been shown to have calming benefits. A 2019 meta-analysis in Depression & Anxiety reported that vigorous exercise helps stave off anxiety. It also can ease symptoms associated with many neurologic conditions, including Parkinson's disease. "More than any medication we have tried, daily cardiovascular exercise seems to slow functional decline and may even modify disease progression in Parkinson's patients," says Dr. Richard, who recommends that during COVID-19, patients look for online fitness classes appropriate for their abilities or disease. (For at-home exercise ideas, read "8 Ways to Stay Active at Home.")
Mindfulness.Yoga and meditation are being studied for their impact on poststroke anxiety and depression, says Dr. Sharrief. "We do not yet have enough evidence to say they produce significant benefits, but some of our patients enjoy these mindfulness techniques and have reported good results." According to one of the few clinical trials that have been conducted, a 2019 study in JAMA Neurology, patients with Parkinson's disease who participated in a mindfulness yoga program for eight weeks reported greater psychological relief and a more improved quality of life than patients who did a program consisting of stretching and resistance training. And a 2019 study in the journal Stroke co-authored by Dr. Sharrief found that mind-body interventions showed promise for easing anxiety in stroke patients, though more research is needed. After having a stroke in 2017, wellness coach Jane Percy, 73, started practicing a loving-kindness meditation. "Being compassionate toward myself and others helps me deal with that noisy radio playing in my head." (For more information and resources on mindfulness, read "How Practicing Mindfulness Can Ease Stress.")
Connection. Sometimes the simplest things are the most effective in alleviating anxiety. For Ali Salama, a former publishing executive in New York City who was diagnosed with multiple sclerosis 10 years ago and who frequently feels overwhelmed by anxiety, that means connecting with friends and family through video calls or sharing funny memes or amusing videos. "It can be tough being cooped up inside," she says. "But talking and texting with friends has really provided some levity. Even if we can't physically be in the same room, it helps to know we are all in this together, and that we will get through it together."