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. As such, we have updated our blog post again with additional questions that have come in, along with some new information that has been released. We will continue to add new questions as needed, so keep checking back. The newer questions are listed first, and some general updates have been made throughout.
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 (newest questions at the top).
You can also view our Q&A with Dr. Joel Perlmutter about the COVID-19 vaccine and PD.
Q: Are there any studies of the long-term effects of COVID-19 and people with PD?
A: Even though we’ve been living with the SARS-CoV2 virus for a year, the virus still remains very new and there is much we still don’t know. There have been small studies that have investigated the effects of active COVID-19 infection on those with PD which you can read about in this article. There is also data being collected currently on those who have “long-haul” symptoms –symptoms that remain present from a long time after virus infection. There is no data to suggest that long-haul symptoms affect people with PD differently than others who have had COVID-19, and time will tell if this remains our understanding.
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 am 65 years old and 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: 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, as far as I am aware. 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: Does having a diagnosis of PD make you eligible for a COVID-19 vaccine, even if you are younger than 65 years old?
A: This depends on the state. In NY State, as of Feb 15, 2021, those of any age with neurologic problems are eligible. In other states, this may not be the case, but the guidelines are changing as more of the older population gets vaccinated. Please consult your local guidelines to be sure.
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.
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 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 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, and to find out when and where you can receive the vaccine.
Q: Once I am vaccinated, can I go back to doing things as I was doing them before the pandemic?
A: For the Pfizer and Moderna vaccines, you are not adequately protected from COVID-19 until about 2-3 weeks after your second vaccine dose. For the Johnson & Johnson vaccine, adequate protection occurs by about 2-3 weeks after the one required dose. Protection may be lower for some of the new variants of COVID-19 that are emerging. Masks and social distancing therefore remain in place for fully-vaccinated people when they are in public for the foreseeable future. You should also continue to avoid medium and large sized in-person gatherings. However, you can feel comfortable that your chance of getting the virus decreases significantly after you are fully vaccinated. In addition, even those who do get the virus after vaccination tend to have a milder course, which is another reason to seek vaccination.
The CDC has put together some guidelines of public health recommendations for fully vaccinated people. These include the new guideline that fully vaccinated people can socialize with other fully vaccinated people indoors without wearing masks or socially distancing. In addition, a fully vaccinated person can visit with unvaccinated people from a single household (grandkids!) who are at low risk for severe COVID-19 disease, indoors without wearing masks or socially distancing.
Q: I am not vaccinated against COVID-19 yet. I have a new rash and would like to see my doctor. Is it safe?
A: Hopefully, you will be vaccinated soon, but until then, you should seek medical care if you need it. The pandemic has been in progress for close to a year now, so at this point you should no longer be delaying the in-person doctor’s visits or medical procedures that you need. You should discuss with your doctor how to proceed. Doctor’s offices and hospitals are taking many precautions to keep patients safe. In addition, if you have not already, consider telemedicine as a way to see your physician for routine care without being there in person. You can read more about telemedicine here.
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.
Q: I have multiple home health aides who come into my home to help in the care of my husband with very advanced PD. My husband and I have been fully vaccinated. Is it safe for the aides to be in my house now?
A: Healthcare workers are eligible to be vaccinated in all states so you should inquire as to whether the home health aides have already been or plan to be vaccinated.
Until they are vaccinated, I would make sure that the aides are scrupulous about their hand hygiene throughout the day and remind them to avoid touching their face, nose, and eyes. Frequently-touched surfaces should be cleaned often and disinfected. Of course, if any of the aides are not feeling well, they should NOT come to the house.
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 right now. It 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 during this tense time. To help minimize stress and normalize the current situation, be sure to establish daily routines, continue to exercise at home, and stay connected with family and friends online or on the phone.
In addition to a potential worsening of PD symptoms from the overall stress of the COVID-19 situation, people with PD should also be aware that PD symptoms would also be expected to worsen if they were to contract the COVID-19 virus. In general, it is very common for PD symptoms to get worse when there is any inter-current illness. In the pre-COVID era, if PD symptoms worsened suddenly, a clinician would be suspicious that an infection was brewing such as a UTI, the flu or bacterial pneumonia. PD symptom worsening can also occur with a COVID-19 infection as well.
Q: If a PD patient is on a ventilator due to COVID-19, how do they get their Parkinson’s medications?
A: This is a huge challenge any time someone with PD is not able to take their medications when hospitalized. Often in this situation a tube is placed through the nose and into the gastro-intestinal tract for delivery of medication and food. The doctors will assess each situation individually to determine the best way to proceed. It is important for you to inform the hospital about all medications the person is taking as well as the dosing/timing so they can make the best decisions for the health of the patient.
Tips and Takeaways
- Three COVID-19 vaccines have been approved in the US, with others likely on the way.
- Distribution of the vaccine is underway, but logistically complicated, and you will need to contact your health care provider to learn how and when you will be able to receive it.
- Most people who are infected with COVID-19 will recover completely. However, older adults and those with underlying medical issues are at an increased risk of developing serious outcomes from COVID-19 as compared to those who are younger and healthier.
- It is incredibly important for everyone, especially the PD community, to follow all recommended risk-reduction guidelines and adhere to local regulations, even after being vaccinated.
- PD symptoms such as balance problems/falls, swallowing difficulties, urinary dysfunction and weight loss contribute to general frailty and increased risk of complications from COVID-19 infection.
- Talk with your doctor about any concerns you have about COVID-19.