COVID-19 and Parkinson’s disease: what is the international community learning?

Sharing the latest research on Parkinson’s and COVID-19

In December 2019, only about six months ago, a novel virus to which no one in the world had immunity started to appear in China. Since then, our lives have completely changed while the world races to contain the spread, treat those infected, understand how the virus works, and develop treatments so that the virus ceases to be a danger for humanity. The loss of life has been devastating, but on the positive side, it has been jaw-dropping to watch the impressive pace of advancement as scientists begin to understand the Severe Acute Respiratory Syndrome Coronavirus 2 (SARSCoV2) which causes the disease COVID-19.

As COVID-19 was spreading across America in March, concern spread as well and our APDA community started asking – what are the specific ramifications of this virus on people with Parkinson’s disease (PD)? Are we at increased risk?

Since the virus was completely new, we did not have many definite answers, but provided guidance based on our understanding of PD in the context of other respiratory viruses and inter-current illnesses. We also have been providing support and resources to help people with PD feel engaged, informed and motivated while they stay at home.

What the initial research data tells us

Over the past several months, physicians and scientists with expertise in PD have gathered their preliminary data on the experience of people with PD with COVID-19. These findings have begun to be published in journals for others to learn from. This type of work is not unique to PD of course. Physicians are collating the data on how COVID-19 affects different people with the entire array of human conditions.

The new data falls into two general categories:

  • Data regarding the lived experience of people with PD during the era of the pandemic COVID-19 (meaning the effect of the COVID-19 situation at large on their lives, not the effects of having contracted the virus)
  • Data regarding people with PD who have contracted COVID-19

Please note that all the papers summarized below only studied small groups of people with PD. The data generated is not enough to form a complete picture and inform public health decisions regarding PD and COVID-19. However, we want to keep you updated as new information is released and therefore have summarized these new studies and their findings for you. Please note that APDA continues to strongly encourage our community to abide by all local laws with regards to social distancing, sheltering in place, and all recommended risk-reduction measures. As an organization, APDA  will take extra precautions as it relates to our activities, due to continued concerns that people with PD may be at increased risk of complications from COVID-19 infection, due to age and other factors (please see here for further discussion).

The lived experience of people with Parkinson’s during the COVID-19 era

  1. A study of anxiety during the pandemic was conducted in Iran. Patients with PD were asked to fill out questionnaires to rate their levels of anxiety. Questionnaires also contained questions related to PD and COVID-19. Data was collected from patients, caregivers and controls. The study showed that:
    • Levels of moderate and severe anxiety were significantly increased in PD patients over caregivers or controls
    • 20% of patients that were polled felt that the COVID-19 pandemic exacerbated their PD symptoms
    • 12% increased their PD medication use during the pandemic.
  1. A study of the impact of the COVID-19 lockdown on PD patients was conducted in Egypt. Patients from the movement disorders clinic were assessed over the phone. The study demonstrated that:
    • Compared to controls, PD patients had significantly increased levels of stress, depression and anxiety along with decreased measures of quality of life, as compared to controls.
    • PD patients also reported a significant decline in physical activity as compared to pre-lockdown.

People with Parkinson’s who contracted COVID-19

  1. Two movement disorders groups – one in London and one in Italy – published a case series of 10 patients with advanced PD symptoms and COVID-19. The average age of the group was 78 with a 12-year duration of disease. The study showed that:
    • Most of the group that was studied required additional levodopa during their infection.
    • Anxiety, fatigue, orthostatic hypotension, cognitive impairment, and psychosis worsened during the infection.
    • Four patients (40%) died.
    • The case series was not large enough to statistically determine if risk of death is increased in people with advanced PD over other patients of the same age.
  1. Another study took a different approach and did not report on the known cases of people with PD and COVID-19 (which would skew the people studied to ones who were sicker and thereby came to the attention of their movement disorders physicians). Instead, they selected a non-biased sample of people with PD in Northern Italy and interviewed them to determine their experience with COVID-19. Of the group of PD patients that were randomly selected for interview, 8.5% were found to have contracted COVID-19.

An analysis of this group of people with PD and COVID-19 showed that:

  • They were statistically of a similar age (approximately 66) and had a similar disease duration (approximately 8 years) as compared to those with PD that did not contract COVID-19
  • Most has mild COVID-19 illness
  • One needed to be hospitalized
  • No one died.
  • The number of patients with PD and COVID-19 who were interviewed was small which limits the ability to draw statistically meaningful conclusions. However, hospitalizations and deaths for this group were similar to those with COVID-19 in Northern Italy who did not have PD. While ill with COVID-19 however, , there was worsening of both motor and non-motor PD symptoms, which required changes in medication in one third of cases. The most significant non-motor issues were urinary problems and fatigue.
  1. A case series was published which detailed the cases of two patients with advanced PD whose PD symptoms suddenly worsened right before a diagnosis of COVID-19 infection. The symptom worsening included increased falls, increased speech disturbances, and increased swallowing difficulties.

This study confirmed a well-known reality, that sudden worsening of PD can indicate that an inter-current medical illness is brewing.  In the past, urinary tract infection was often considered first, but today, COVID-19 must be strongly considered among the possible illnesses that could be responsible for the worsening of PD symptoms.

As additional studies are published, the above observations may need to be modified and expanded. Stay tuned for updates as they become available!

Tips and Takeaways

  • Since COVID-19 is so new, we are all learning more about it on a continual basis. APDA is monitoring the information closely and sharing the most relevant and credible information with you.
  • A number of small studies have been published so far which have investigated both the lived experience of people with PD during the COVID-19 pandemic and lockdown, as well as the experience of people with PD who contracted COVID-19
  • As more data is collected, the situation will become clearer. However, so far these studies present the following observations:
  • People with PD demonstrated more anxiety and depression as well as decreased levels of quality of life and physical activity as compared to controls during the COVID-19 lockdown.
  • A random sampling of a small group of PD patients with COVID-19 demonstrated outcomes that were similar to others of the same age with COVID-19 who did not have PD.
  • A case series of 10 patients with more advanced PD however, demonstrated that these patients did poorly in the face of COVID-19. Four of this group died. The number of patients studied however, was not large enough to determine if advanced PD increases the mortality rate of COVID-19.
  • Even people with less advanced PD showed worsening of motor and some non-motor symptoms when infected with COVID-19.
  • In advanced PD, a rapid worsening of PD could mean onset of COVID-19 infection.

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Dr. Rebecca Gilbert

APDA Vice President and Chief Scientific Officer

Dr. Gilbert received her MD degree at Weill Medical College of Cornell University in New York and her PhD in Cell Biology and Genetics at the Weill Graduate School of Medical Sciences. She then pursued Neurology Residency training as well as Movement Disorders Fellowship training at Columbia Presbyterian Medical Center. Prior to coming to APDA, she was an Associate Professor of Neurology at NYU Langone Medical Center. In this role, she saw movement disorder patients, initiated and directed the NYU Movement Disorders Fellowship, participated in clinical trials and other research initiatives for PD and lectured widely on the disease.

A Closer Look ArticlePosted in Living with Parkinson's, Risk Factors for Parkinson's

DISCLAIMER: Any medical information disseminated via this blog is solely for the purpose of providing information to the audience, and is not intended as medical advice. Our healthcare professionals cannot recommend treatment or make diagnoses, but can respond to general questions. We encourage you to direct any specific questions to your personal healthcare providers.