CORONAVIRUS DISEASE 2019 AND THE PD COMMUNITY

APDA COVID-19 INFORMATION & RESOURCES:

The American Parkinson Disease Association (APDA) continues to monitor the COVID-19 situation, particularly as it relates to our Parkinson’s disease (PD) community.

This page is updated regularly as new information becomes available.


Vaccines:
Three COVID-19 vaccines have been approved for use in the United States — one manufactured by Pfizer/BioNTech, one manufactured by Moderna, and one manufactured by Johnson & Johnson.

Many other vaccines are in various stages of clinical trial.  The more people understand about how the vaccines are created and work, the more comfortable they may be about taking them.

How do the new COVID-19 vaccines work?  Vaccines work by introducing an element into the body that itself can’t cause illness but is recognized as an infection by the immune system. The immune system then responds to the element, giving the body the ability to defend against the actual infection should it encounter it in the future.

In the past, vaccines were created by taking the actual pathogen and weakening it to the point that it didn’t cause illness or by taking a piece of the pathogen that itself didn’t cause disease. This was then injected into the body, inducing the body to create antibodies, which were protective and long-lasting, and would work in the future, should the live pathogen enter.

Two of the currently approved vaccines, from Pfizer/BioNTech and Moderna, take a different approach and consist of a piece of the mRNA instructions for creating a piece of the virus contained within tiny lipid balls.  Once injected, our own cells turn these instructions into one of the COVID-19 proteins, which by itself is harmless. The protein is recognized as foreign by the body, triggering the protective immune response, which allows it to “remember” COVID-19 as foreign.

mRNA is easier to manufacture in a laboratory in large quantities than a weakened virus, and using mRNA technology allowed for the rapid creation of the vaccines, which typically take many years to develop.

The Johnson & Johnson vaccine works slightly differently. The genetic instructions for creating a piece of the virus are contained within a viral vector. It uses the shell of a virus for the common cold (in which the genetic instructions that cause the common cold have been removed) in order to deliver the COVID-19 genetic material instructions into the body. The lipid beads that contain the mRNA in the Pfizer/BioNTech and Moderna vaccines require extremely cold storage conditions which make distribution of the vaccine more complicated. The viral vector of the Johnson & Johnson vaccine can be kept in regular refrigeration for up to three months.

Are the vaccines safe?  Clinical trials of all three vaccines enrolled tens of thousands of people and all had excellent safety profiles. In addition, the  vaccines have since been given to millions more with excellent safety records. The CDC uses two systems to monitor vaccine reactions, Vaccine Adverse Event Reporting System (VAERS) and V-safe. V-safe is a smartphone-based app that allows the public to submit their vaccine reactions. In a recent report of VAERS,  the number of severe adverse reactions reported from the COVID-19 vaccines was exceedingly small (about 500 reported out of approximately 14 million vaccine doses analyzed) The CDC continuously reviews this data. You should feel confident that the vaccines are very safe.

Because of the VAERS system, it was discovered that 6 people out of 6 million who received the Johnson & Johnson vaccine developed a serious clotting disorder in the brain called sinus venous thrombosis. Because of this, administration of the Johnson and Johnson vaccine was briefly put on pause, but after further review, the vaccine is again being given in the US. This data review demonstrates the benefit of the VAERS system in identifying rare side effects in order to ensure the safety of the vaccination program.

Do the vaccines work?  Clinical trials of the Pfizer/BioNTech and Moderna vaccines found that they were up to 95% effective in protecting people against the virus – an astonishingly good number as compared to vaccines against other illnesses such as influenza. Those at particularly high risk of developing complications from COVID-19 infection, including those over 65 and with chronic medical conditions, were protected as well. To be protected to this degree, two doses of the vaccines were necessary, given three weeks (Pfizer/BioNTech) or four weeks (Moderna) apart.

Clinical trials of the Johnson & Johnson vaccine tested a one-shot vaccine. After one shot, its efficacy of protecting people from the virus was 66%. However, it was 85% effective against severe disease and 100% effective against death (that is, no one in the trial died of COVID-19.)

When can I get a vaccine? Vaccinations are underway across the country. Recently, eligibility for receiving the vaccine was dramatically simplified and now anyone over the age of 16 is eligible to receive the vaccine. The logistics of vaccination distribution are very complicated, however, and the rollout is different from place to place. In some states it has been relatively easy to get a vaccine appointment, while in others it remains a challenge.  We encourage you to ask your doctor any questions regarding the vaccines and your particular clinical situation. Your doctor will also be the main source of information about where and when you can receive the vaccine.

What are the guidelines for those who are vaccinated?

Recently, the CDC updated their guidelines for those who are fully vaccinated.

If you’ve 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, including local business and workplace guidance.
  • If you travel within the United States, you do not need to get tested before or after travel or self-quarantine after travel.

For now, fully vaccinated people should continue to:

  • Follow the guidance at your workplace and local businesses.
  • If you travel, you should still take steps to protect yourself and others. You will still be required to wear a mask on planes, buses, trains, and other forms of public transportation traveling into, within, or out of the United States, and in U.S. transportation hubs such as airports and stations. Fully vaccinated international travelers arriving in the United States are still required to get tested within three days of their flight (or show documentation of recovery from COVID-19 in the past three months) and should still get tested 3-5 days after their trip.
  • 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.

Are there any reasons why a person with PD should not get a COVID-19 vaccine?  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.  There is also no evidence that people with PD should receive one vaccine over another. It is best to receive whichever COVID-19 vaccine becomes available to you.

Why should a person with PD get the COVID-19 vaccine?  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 (see below). 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.

Do the vaccines make you feel ill?  While there have been some varied reactions, the most common is a mildly sore arm (similar to receiving any other shot) and that is it. 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 chance of someone with PD getting COVID-19, as well as the significant downsides of all the pandemic-related restrictions on social and physical activities for someone with PD vs. the potential for side effects from the vaccine; the positive aspects of getting the vaccine despite the side effects outweigh the negative ones.

When will life get back to normal? We are eager to resume in-person events, groups and classes, but we continue to take extra precautions due to the potential increased risk of COVID-19 complications for people with PD. As such, APDA will continue to offer virtual programming for your safety and convenience, postponing all in-person events through May 31, 2021. We hope by that date we will have enough information about vaccination rates and hopefully can safely begin to incorporate some in-person programs going forward. Of course we will continue to follow the guidelines of the CDC and federal and local authorities and we will make all decisions with your safety in mind.

APDA is hopeful that strong vaccination participation across the US will be the turning point that will halt the pandemic and allow for a return to our pre-COVID lives.

Visit APDA’s virtual events calendar to stay supported, engaged and informed at home!

For more information: We will keep our website as up-to-date as possible but we recommend you also consult your local APDA Chapter for the latest virtual class/group schedules and information as we are constantly adding new offerings to help you and support you at home.

For answers to additional COVID-19 questions please visit Dr. Gilbert’s recent blog post

You can also view our Q&A with Dr. Joel Perlmutter about the COVID-19 vaccine and PD.

(Updated May 14, 2021)

Para más información sobre el COVID-19, haga clic aquí

 

Basic Information About COVID-19 & the PD Community:

There have been a number of studies conducted that probe the relationship between COVID-19 and PD which you can review.

The literature supports that:

  • 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.
  • People with early- and mid-stage PD and COVID-19 demonstrated outcomes that were similar to others of the same age with COVID-19 who did not have PD.
  • People with advanced PD did not fare well in the face of COVID-19 with mortality due to COVID-19 among people with PD correlating with more advanced disease.
  • In people with advanced PD, a rapid worsening of PD could mean onset of COVID-19 infection.

What features of PD could increase complications from coronavirus?

PD motor- and non-motor symptoms can be exacerbated by any medical illness, including COVID-19. This means that in addition to the respiratory symptoms of the virus, people with PD may feel that they are slower and stiffer than usual and that their medications don’t seem to be working as well. Hallucinations may start in a person who never experienced that symptom before. Recovery from the illness can be more drawn out.

In addition, some people with PD may have restrictive lung disease which refers to an inability of the lungs to fully expand with air. Restrictive lung disease can occur in PD because of rigidity of the muscles of the chest wall, as well as bradykinesia, or slowness of the muscles responsible for chest wall expansion and contraction. People with PD may also have abnormalities in the posturing of their trunk including head drop, stooped posture, tilting of the trunk and bending at the waist. These postures can restrict the amount that the lungs can fill up with air. PD can also predispose a person to dysfunction of swallow and difficulty clearing secretions from their airway. These issues could contribute to development of complications during a respiratory illness.

People with advancing PD also may start to experience decreased mobility, with more risk of falls. As PD advances it can cause additional problems including urinary dysfunction and weight loss. All of these elements can contribute to general frailty and increased risk of infection, including increased risk from COVID-19.

All things considered, people with PD, because of age and because of their underlying PD symptoms, should consider themselves at increased risk of complications from COVID-19.

Questions?

If you have a question about COVID-19 and PD that is not answered here, please submit your question to our Ask A Doctor web feature.