A post-COVID world with Parkinson’s Disease

Since March 2020, we have been navigating the strange COVID-19 reality, a reality that kept shifting and continues to keep shifting. The impact of COVID-19 affected every part of our lives. First and foremost, it changed how we interacted with friends and family, but also changed how we shopped, how we exercised, how we gathered, how we travelled. As the year unfolded, we learned a whole new vocabulary – social distancing, lockdowns, quarantine, Zoom, and gained knowledge that we never thought we would ever need – about viruses, pandemics, and vaccinations.

We are now at a new crossroads. All Americans over the age of 12 are currently eligible for free COVID-19 vaccines, and although some may continue to have trouble securing a vaccination appointment for themselves, there are many places around the country where walk-ins for the vaccines are now available. With this new reality in place, we are looking toward a future in which COVID-19 might become a thing of the past.

But how to best navigate this return to normal? Many of our constituents still have numerous unanswered questions about what the future will hold. Many have concerns and anxieties about returning to regular life after a year of limited social interaction.

Dr. Joel Perlmutter, medical director of the APDA Greater St Louis Chapter and APDA Scientific Advisory Board member answered your questions on this topic recently during a live webinar, which you can view here. I will also dedicate this blog to a discussion of these questions pertaining to a post-COVID world.

Q: If I am vaccinated, can I return to my normal pre-COVID activities?

A: If you are vaccinated, you can take comfort in the fact that if you encounter a person infected with COVID-19, there is a high chance that you will be protected from contracting it. This is reflected in the recently updated CDC guidelines for the vaccinated.

CDC guidelines for the vaccinated:

If you have been fully vaccinated*:

  • You can resume activities that you did prior to the pandemic.
  • You can resume activities without wearing a mask or staying 6 feet apart, except where required by federal, state, local, tribal, or territorial laws, rules, and regulations – this includes following the guidelines of local business and your workplace
  • Guidelines for travel need to be followed as well
  • You should still watch out for symptoms of COVID-19, especially if you’ve been around someone who is sick. If you have symptoms of COVID-19, you should get tested and stay home and away from others.
  • People who have a condition or are taking medications that weaken the immune system, should talk to their healthcare provider to discuss their activities. They may need to keep taking all precautions to prevent COVID-19.

CDC guidelines for the unvaccinated:

If you are not vaccinated, you need to continue wearing a mask and practicing social distancing since you are not protected and could contract the virus and could also pass the virus to someone else.

Q:  Are there any reasons to remain cautious?

A:  Although the Moderna and Pfizer COVID-19 vaccines are 95% effective in preventing transmission, they are not 100% effective. It is definitely possible to contract COVID-19 even after being fully vaccinated. (The good news is that if a vaccinated person does contract COVID-19, the disease course is more likely to be mild than in an unvaccinated person.)

The COVID-19 virus, like all viruses, is able to mutate and create variants of itself. Many variants have already been identified and are in circulation in different places in the world. So far, the vaccines approved in the US seem to be protective against the identified variants, but it is definitely possible for a variant to emerge that outsmarts the vaccines. The vaccine developers are well aware of this likelihood. Some anticipate that an annual booster vaccine will be necessary to cover the prevalent variants, similar to an annual flu shot.

Because of these caveats, some physicians remain cautious and recommend that a vaccinated person who is inside with others who are not vaccinated or whose vaccination status are not known, should remain masked. People who live in areas where vaccination rates are low and COVID rates are high or rising, may feel more inclined to wear a mask inside even if they are vaccinated.

However, every decision you take in life comes with its own set of risks and benefits and before you make every decision, you conduct a subconscious risk/benefit analysis. The decisions of how to re-engage after COVID-19 are no different.

Being vaccinated profoundly reduces the risks of contracting COVID-19, although it does not eliminate all risk. Therefore, for some vaccinated people, the small possibility of contracting COVID-19 despite vaccination and the potential introduction of a COVID-19 variant that may not be covered by the current vaccines, is enough to keep them wearing masks when they are inside and avoiding crowded indoor events altogether. However, even those who are cautious feel that it’s ok for some behaviors to change, such as not wearing a mask outside or not wearing a mask inside if all the people at the event are vaccinated.

Also, due to the rapidly changing guidelines and constantly updated data, it can be confusing and hard to know the best way to proceed in some scenarios. If you’re concerned, or unsure, you always have the option to err on the side of caution and wear your mask, or not attend an indoor event, especially if it makes you, or the people you’re with, more comfortable. We’re all finding our way back to normal and it will happen at different rates for different people.

The CDC as well as public health officials around the country are continuing to closely monitor the situation and will change guidelines should something change the risk/benefit ratio again– such as the introduction of a variant that is not covered by current vaccines.

Q:  Will COVID-19 ever completely go away?

A:  The answer is probably no. Experts are now saying that COVID will likely become endemic, circulating at low levels in the population, much like many viruses. We may need a yearly COVID vaccine that is adapted every year to cover the prevalent variants that are circulating at that time.

Q:  I still feel uneasy at activities. What should I do?

A:  Transition slowly. Do what makes you feel comfortable. It is OK to ease back into things at your own pace. It might help to remind yourself of the positive benefits of being vaccinated and getting back to your pre-pandemic life. Social stimulation is important for our mental, physical, and emotional health. Embrace the opportunity to see friends and family you haven’t seen all year. Use the energy of an in-person fitness class to motivate you to get moving again. You can take it as slowly as you need, but it could help to think of it as a positive thing to be excited about. Here are some of the activities that you may be wanting to return to:


Returning to regular exercise may be one of the more important things that you can do. Many people with PD feel that they have suffered setbacks during the pandemic because they stopped exercising on a regular basis. Many of you joined the phenomenon of virtual exercise classes and were motivated to “show up” and to exercise maximally by the other participants in the online classes. But there are many others who did not continue their exercise at the same frequency, or to the same degree, when they were home. If you are among those people but are hesitant about returning to your in-person activities all at once, consider starting with an exercise class.

When you do start, you might notice that you are not able to exercise to the level that you did before the pandemic. This can be frustrating and disheartening. But hang in there and have patience with yourself. Do your best, and with effort and consistency you will hopefully be able to return to your pre-pandemic level of fitness. Consider hiring a personal trainer to work with you one-on-one to get your fitness level to where you want it to be.

Social gatherings

The next thing to consider returning to are social gatherings. Besides any unease you may feel about contracting COVID-19, you may be feeling self-conscious about the possibility of seeing people whom you have not seen in a long time, because they may notice that your condition has worsened.

This is a real concern for some – they do not want people to feel sorry for them and don’t want people to notice a decline. But take heart – everyone, whether they have PD or not, is in the same boat to one degree or other. Some people may have gained weight. Or are having more trouble walking because of their own health concerns. Or simply feel out of practice socially. So, the people you are scheduled to meet could very well be feeling self-conscious too!

Returning to life post-COVID is certainly a positive development overall, but don’t ignore the anxiety and frustration that this transition may bring. Consider counseling to talk through the issues that you are experiencing. And remember that it is perfectly fine to take things slowly and incrementally.

Q:  If I have PD and also had COVID, will I have long-term problems as a result? Is my PD going to be worse than it would have been?

A:  Long-haul COVID definitely occurs, but not for everyone. Congress just dedicated funds to and tasked the National Institutes of Health (NIH) with studying this phenomenon so that we will know more as the research is done. There has been one recent study which 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. Be sure to talk with your doctor about any new issues you may be having.

*Fully-vaccinated means you are two weeks out from your second Pfizer or Moderna shot, or two weeks out from your Johnson and Johnson shot. 

Tips and Takeaways

  • Navigating the world with PD as COVID-19 restrictions are lifted can be stressful and anxiety-provoking
  • The CDC has revised their guidelines which now state that fully-vaccinated people can resume activities without masking or social distancing, unless where required by other authorities
  • Despite this, some who are vaccinated remain apprehensive and will choose to continue to wear masks and remain socially distanced when they are around those who are not vaccinated.
  • Some will need to ease back into their old lives incrementally and slowly. Be patient with yourself, and each other
  • Public health officials continue to monitor the situation and will change guidelines as needed
  • For more discussion on returning to life post-COVID, view our recent webinar with Dr. Joel Perlmutter

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 Living with 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.

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