Pandemic takes a toll on people with Parkinson’s disease
“Everything worsened.”
The COVID-19 pandemic has made it harder to live with Parkinson’s disease, according to a survey of more than 7,000 people who have the disease or care for someone with it.
This spring, people with Parkinson’s had more trouble moving, and more mood swings, anxiety and depression – all typical symptoms of the chronic illness. Most also reported difficulties attending medical appointments, receiving in-home care, getting adequate exercise, obtaining their medications and participating in social activities, according to the survey conducted by the Michael J. Fox Foundation for Parkinson’s Research.
“Everything worsened,” said Dr. Carlie Tanner, a professor of neurology at the University of California, San Francisco, who helped lead the study.
About 1 million Americans have the progressive disease, which is characterized by tremors, slow movement, stiffness and loss of balance.
The survey included 51 Parkinson’s patients who said they caught COVID-19. Just over half of them reported worsening of their symptoms, including tremors, loss of balance, mood issues, digestive problems, pain and fatigue.
Those with both diseases were more likely to be former or current cigarette smokers and to have lung disease, Tanner said.
“There wasn’t really a suggestion that people with Parkinson’s were more likely to have other bad outcomes,” she said.
Not much information exists about the two diseases in combination, although the risk of Parkinson’s increases with age, so most people with the condition are also at higher risk for a serious case of COVID-19, she noted.
Dr. Carlie Tanner, a professor of neurology at the University of California, San Francisco, who helped lead the survey of more than 7,000 people
Tanner said she was surprised at the toll that living through pandemic – even without catching COVID-19 – took on people with Parkinson’s, “because of social isolation, and a change in access to many services.”
People of color and those with low incomes suffered the most disruption of services including medical care, exercise classes and access to food, the survey found.
While acknowledging the difficulties, Tanner said people with Parkinson’s should make a particular effort during the pandemic to be in touch with others “in whatever ways are possible” – via phone, internet and socially distant visits – to maintain their social connections.
Respondents completed the survey between April 23 and May 23, although the foundation plans to keep it open indefinitely to continue collecting information from people with the disease.
The survey is part of the Fox Insight online clinical study, a 3-year-old research project that explores the lived experience, genetics and variability of Parkinson’s. It includes more than 50,000 volunteers, and de-identified data from the study is made available to qualified researchers.
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