Answering Your Questions about Parkinson’s disease and Coronavirus Disease 2019 (COVID-19)

Answering Your Questions About Parkinson’s Disease and Coronavirus Disease 2019 (COVID-19) – Updated

People with Parkinson’s disease (PD) have been asking a lot of questions about COVID-19 since the pandemic began and APDA has been here with the answers you need.

Additionally, please read APDA’s general information for the PD community about COVID-19. For the most accurate information about the virus, please focus on reliable websites such as the Centers for Disease Control & Prevention (CDC).

Below are some of the questions I have received from our PD community about COVID-19 through our Ask A Doctor website portal.

We also have two great Q&A sessions with APDA’s Dr. Joel Perlmutter that you may find interesting and insightful.  One is about the COVID-19 vaccine and PD, and the other focuses on how to navigate the challenges of returning from COVID lockdown.

Q: Are there any studies of the long-term effects of COVID-19 and people with PD?

A: A recent study examined post-COVID symptoms in a small number of PD patients. Among the symptoms that persisted after COVID infection included worsening of motor function, increased levodopa daily dose requirements, fatigue, cognitive disturbances, and sleep disturbances. More research will need to be done to corroborate and expand on these findings.

Q: Are there any studies of the effects of the COVID-19 vaccine on people with PD?

A: Currently, there is no data that the COVID-19 vaccine has any long-term negative effects on anyone, including those with PD. Some people with PD have reported a worsening of PD symptoms in the short term after vaccination, which then resolve. The Center for Disease Control (CDC) instituted a vaccine safety monitoring system, called v-safe, which captures side effects of the vaccine. If you have side effects from the vaccine and have PD, you can alert the CDC using this system. This will be an invaluable tool for scientists to discover trends in vaccine side effect profiles.

Q: I have Parkinson’s disease. Should I receive a COVID-19 vaccine?

A: For information about the COVID-19 vaccines – how they work, safety, and more — please visit our updated COVID-19 information section.  In general, your age alone increases your risk of complications from COVID-19 infection. Depending on what PD symptoms you have, PD can also increase the risk of complications from the virus. For these reasons, it would be wise to protect yourself as much as possible from COVID-19, which would include getting vaccinated. As always, speak to your doctor about your individual clinical situation and to find out when and where you will be able to get the vaccine.

Q: How does the Delta variant affect someone with PD?

A: We do not have any specific data yet on how the Delta variant affects people with PD.

The COVID-19 virus, like all viruses, is able to mutate and create variants of itself. Many variants of COVID-19 have been identified around the world. Only a few of these variants have been of concern to public health however, because they have a characteristic that makes the virus either more easily transmissible or more likely to cause significant disease. The Delta variant is currently the variant of concern and has been shown to be more easily transmitted from person to person than prior variants of COVID.

The vaccines approved in the US do offer protection against the Delta variant, but not to the extent that was seen in the original trials. That means that fully vaccinated people are more likely to get infected with the Delta variant of COVID-19 than other variants. However, the major goal of the vaccines is to prevent severe illness, hospitalization, and death from COVID-19 and all the approved vaccines are approximately 90% effective in preventing these consequences of infection.  Therefore, vaccination remains extremely valuable.

Q: I have heard from some of my friends with PD that amantadine should not be taken when getting the COVID-19 vaccine. Is this true?

A: Although it may be the case that you should not take the nasal flu vaccine when also taking amantadine (because it might make the vaccine less effective), this is not the case for the COVID vaccine. There should be no issue with taking amantadine while getting the COVID-19 vaccine.

Q: In which arm should I have the vaccine, the one with the PD symptoms or the one without?

A: Since you will likely have some soreness in the vaccinated arm for 1-2 days, it makes sense to get the vaccine in the arm that is less functional.

Q: Should I keep my normal schedule of Parkinson’s medications on the day of a COVID-19 vaccination?

A: There is no reason to change your PD meds on the day of the vaccination.

Q: What side effects can I expect from the COVID-19 vaccine?

A: While there have been some varied reactions, the COVID-19 vaccines are approved by the FDA and considered safe. Some people may simply experience a mildly sore arm and that is it (similar to receiving any other shot). There are some who may have a more noticeable reaction and feel chills, body aches, headaches and/or fatigue for 1-2 days, but these generally clear up quickly. There have also been some anecdotal reports (not published) of PD symptoms temporarily worsening after COVID-19 vaccination.

Weighing the risks of someone with PD getting COVID-19, as well as the significant downsides of all the pandemic-related restrictions on social and physical activities to someone with PD vs. the potential for side effects from the vaccine, I would favor getting the vaccine. As always, discuss all your medical concerns with your neurologist and primary care physician.

Q: I received the COVID-19 vaccine two days ago and my tremors are worse. Do you think it is related to the vaccine?

A: The vaccine is certainly able to cause short term side effects of fatigue, aches and even fever. There isn’t extensive data yet on how it affects PD symptoms, just anecdotal data.  For some people, PD symptoms are worse in the short term. This does not mean that your PD has progressed, and I would expect that you will return to your previous baseline in the next few days. I would talk with your neurologist about your worsened tremor as well.

Q: Could the COVID-19 vaccine negatively affect someone with PD and dementia?

A: The common side effects of the COVID-19 vaccine tend to be a sore arm, fatigue, headache, and the like for 1-2 days. If someone has dementia, they may act or respond differently because they might not feel well. However, this does not mean that there is a worsening of the person’s underlying neurologic condition. Side effects should get better and the person should return to his/her baseline in 1-2 days.

Q: Are there any reasons why a person with PD should not get a COVID-19 vaccine?

A: There are no substantiated scientific concerns to suggest that the vaccines have a different safety profile in people with PD as compared to the general population, so what we know about the vaccines for all-comers would hold true for those with PD.  Having PD might lead to a more complicated infection should you contract COVID-19, plus people with PD also tend to be older which further increases the risk for complicated COVID-19 infection. Because of these issues, vaccination for COVID-19 for people with PD is a good idea. Discuss with your doctor any concerns you have about the COVID-19 vaccine.

Q: Once I am vaccinated, can I go back to doing things as I was doing them before the pandemic? Does the emergence of the Delta variant change anything?

A: The CDC continually updates its guidelines in response to evolving public health conditions.

  • Fully vaccinated people can participate in many of the activities that they did before the pandemic; for some of these activities, they may choose to wear a mask.
  • To reduce the risk of becoming infected with the Delta variant and potentially spreading it to others, everyone, including those who are fully vaccinated, should wear a mask in public indoor settings if they are in an area of substantial or high transmission. The CDC constantly updates the map of US counties for which this applies. You will need to refer to your local public health authorities to determine whether your area is one with substantial or high transmission
  • Fully vaccinated people might choose to mask regardless of the level of transmission in their area, particularly if they or someone in their household is immunocompromised or at increased risk for severe disease, or if someone in their household is unvaccinated. People who are at increased risk for severe disease include older adults and those who have certain medical conditions, such as diabetes, overweight or obesity, and heart conditions.

Q: Can the stress of the COVID-19 situation make Parkinson’s symptoms worse?

A: Stress can definitely increase PD symptoms. I have discussed the relationship between stress, anxiety and PD in general before, and COVID-19 has certainly created a very stressful environment for everyone. There can be stress related to contracting the virus as well as the anxiety and concern about returning to pre-pandemic activities now that life is starting to return to “normal.” The stress is being felt much more acutely by older adults and those with chronic medical issues, members of the population who have an increased risk of complications from COVID-19 infection. Many people with PD experience anxiety as a non-motor feature of their PD, and many are reporting that anxiety has increased since the pandemic began. To help minimize stress and normalize the current situation, be sure to establish daily routines, continue to exercise (at home if that’s more comfortable for you), and stay connected with family and friends in person if you’re ready, or online or on the phone. Be patient with yourself and with others.

Q: My husband has PD with moderate symptoms. Normally, he is independent with all his activities, although he walks slowly. One day, his symptoms worsened dramatically, and he was not able to walk. I took him to the ER where he tested positive for COVID-19. His recovery has been very slow and he is now in rehab. Is this normal? Will he recover?

A: In general, people with PD and other brain illnesses often have 1) worsening of their PD symptoms in the face of inter-current illnesses such as COVID-19, and 2) have a slower recovery to their baseline once they have recovered from the inter-current illness. It sounds like both of these have happened to your husband. However, with proper rehab and some perseverance, there is hope that he will slowly return to his baseline.

Q: What happens if I get a cough from COVID-19? I know that there are particular cough medications that a person with PD is not supposed to take.

A: You are correct that it is important to pay attention to possible medication interactions. Cough and cold medications containing dextromethorphan, pseudoephedrine, phenylephrine, and ephedrine need to be avoided only if you are on a monoamine oxidase inhibitor (MAOI) such as rasagiline, selegiline or safinamide. Be sure to check the product ingredients before purchasing, and if you are unsure ask your doctor or pharmacist to clarify which brands/medications should be avoided. If you are on an MAOI, any other cold medication without these ingredients is safe for you to take. If you are not taking an MAOI, any cold medication is suitable for you.

Here is the list of medications to avoid in PD.

Q: I am on amantadine for my PD. I know that it is also an anti-flu medication. Does it work for COVID-19?

A: We do not have evidence that amantadine acts against COVID-19, so you should continue to assume that it is not effective against this coronavirus.

Tips and Takeaways

  • Most people who are infected with COVID-19 will recover completely. However, older adults and those with underlying medical issues such as advanced PD are at an increased risk of developing serious outcomes from COVID-19 as compared to those who are younger and healthier.
  • Three COVID-19 vaccines have been approved in the US.
  • Getting vaccinated reduces your chances of contracting COVID-19, but those who are vaccinated can still contract COVID-19.
  • Vaccination is about 90% effective in protecting against severe illness, hospitalization, and death, even for the new Delta variant
  • Continue to monitor CDC guidelines for information on COVID-19.
  • Talk with your doctor about any concerns you have about COVID-19 or COVID-19 vaccines.

Do you have a question or issue that you would like Dr. Gilbert to explore? Suggest a Topic

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 COVID-19 & PD, 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.