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. 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: I am 65 years old and I have Parkinson’s disease. Should I receive a COVID-19 vaccine?

A: For information about the Pfizer/BioNTech and Moderna 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: You are not adequately protected from COVID-19 until about 2-3 weeks after your second vaccine dose. At that point, protection from COVID-19 infection is about 95% for both the Pfizer and Moderna vaccines for the original strain of COVID-19. This number may be lower for some of the new variants of COVID-19 that are emerging. What we don’t yet know is whether a vaccinated person would still be able to transmit the disease to someone else. For that reason, and because of the concern of emerging COVID variants, masks and social distancing will remain in place for everyone for the foreseeable future (please follow your local health authority guidelines). 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.

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: I have PD. Should I be venturing out for activities such as exercise classes or should I try to stay at home and only go out if I can safely stay six feet away from others?

A:  Hopefully, you will be vaccinated soon, but until then it is important to reiterate that the risk of a complicated course of COVID-19 is not the same for everyone and is not the same everywhere. You should follow the guidance of your local health authorities and your doctor.  People who are over 65 and have underlying medical conditions need to be particularly vigilant. Studies from around the world are examining whether PD is an underlying medical condition that increases the risk factor for worsened COVID-19. For those with advanced symptoms, the answer seems to be yes. The PD community therefore must be more careful than the general population. If you must be in a situation in which there are other people around, wearing masks and staying more than six feet away are important, and don’t forget to wash your hands frequently. These measures reduce (but do not eliminate) the risk of transmission.

Q: I am 60 years old and I have had PD for the past six years. I am very active and work as a school teacher. I taught remotely on a virtual platform for several months, but school is now in-person. Is it safe for me to be in the building, or should I be asking to teach remotely?

A: Hopefully, you will be vaccinated soon, but until then, I strongly advise you to discuss this with your neurologist and primary care physician who know you best. There are many details of your health that should be taken into account, including any other underlying medical conditions you may have and exactly what your PD symptoms are. Having said that, although PD does not seem to increase the chance of contracting COVID-19, depending on many factors, you may be at higher risk for more complicated disease if you do contract COVID-19. Certainly, wearing masks and keeping six feet apart from others, especially important for activities indoors, does lower (although does not eliminate) the risk of contracting COVID-19, and frequent hand washing also helps. However, it would be very reasonable to ask to teach remotely under the circumstances.

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. Should I eliminate this care because of the concern that these aides will inadvertently infect him?

A: Hopefully, you and your husband will be vaccinated soon. Healthcare workers are also likely to be vaccinated soon and you should inquire as to whether the home health aides have already been or plan to be vaccinated. Until then, there are no easy answers. It does not seem realistic to make you the sole caretaker of your husband who typically needs multiple people in addition to you to help him over the course of the week. It does not seem that this would be a good solution for him or you. Of course every time someone comes into your house they could be bringing the virus in, even if they are asymptomatic, but he would be at increased risk of falling for example, if you were solely responsible for all his care. So, there are risks in both directions, but in this case, it is likely that the benefits of aides outweigh the risks, and you should continue to have at least some of the aides come to your house.

I would make sure 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.

Q: My mother has advanced PD and has been much more anxious since the start of the COVID-19 pandemic and its restrictions. Do you have any advice on how to help her?

A: Hopefully, your mother will be vaccinated soon, but until then she should go outside at least once a day, making sure that she stays 6 feet away from anyone (except immediate family or whoever is living with her in the house, as long as they are feeling well and taking proper risk-reduction efforts.) Getting fresh air and exercise is vital for everyone. It would be great if she can go for a walk each day, or even just sit outside in the yard or front porch for a while.

Even if she does this, she is still likely spending more time inside than before the pandemic and this has been very difficult for people. I would recommend creating a schedule for her – with online activities. Does she like to play card games? Listen to audio books? Interact with her grandchildren? All these things and more can be done online. There are online gaming sites, libraries which are offering their entire collection for download, an audio book app like Audible, a video chat service like Skype or Zoom to see grandchildren, and much more.

There are many online exercise and therapy classes which are very important to stay active even when inside – check out APDA’s virtual events calendar for upcoming classes and programs.  Be sure to build some movement into her daily routine. I hope these ideas help your Mom fill her days productively!

Tips and Takeaways

  • Two 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.

 

 

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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 APDA News, 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.