Parkinson’s and Immunity: What does this look like during COVID-19?

Erika Adelman, LMSW Social Work Resource Liaison of the Parkinson's and Movement Disorders Program at New York Presbyterian Brooklyn Methodist Hospital and Program Coordinator of the APDA Information & Referral Center shared some information on building immunity for folks with Parkinson’s and how engaging activities can be helpful in doing so.

What role does immunity play with folks with Parkinson’s?

Living with Parkinson’s Disease (PD) doesn’t necessarily put you at a higher risk of contracting COVID-19. However, if someone with PD was to contract the COVID-19 virus, it may be harder for that individual to recover from it. It’s important to remember that no two people with Parkinson’s are the same and unfortunately, people of all different ages, races, ethnicities, genders, backgrounds, and diagnoses have contracted COVID-19 during the course of this pandemic. While there are many people who have and/or will recover from the virus, those who have more advanced PD or that have underlying medical issues do have an increased risk of developing more serious symptoms and outcomes. Please keep in mind that any medical illness or infection can exacerbate the motor- and non-motor symptoms of PD, including COVID-19, which means that in addition to the respiratory symptoms of the virus, people with PD may feel like they are slower and stiffer than usual and that their medications don’t seem to be working as well if they contract the virus. Hallucinations may also start in a person who never experienced that symptom before.

However, before an individual automatically assumes that they have contracted COVID-19, it’s important for that person to assess other variables that could possibly make them more symptomatic such as whether or not they have any of the symptoms of the COVID-19 virus as outlined by the CDC, if they have been hydrating, taking their PD medications on-time and as prescribed, whether they are experiencing “off” episodes, and/or whether they  have an underlying infection such as a Urinary Tract Infection or Pneumonia. If you are having a hard time differentiating your PD symptoms from COVID symptoms, I’d encourage you to reach out to your primary care doctor or neurologist as soon as possible instead of rushing to the ER so that they can help you rule out any of the aforementioned variables.

What recommendations would you give someone with Parkinson’s to help build immunity, especially now with COVID?

The best advice for those who are living with PD is to focus on prevention, which includes regular handwashing, social distancing, avoiding crowds, and staying home. Before venturing out, see if any of the things that you need or want could be delivered. Thus, if you do have to go out to a public place, please continue to wear a mask, frequently sanitize your hands, and do not touch your face, whether you have COVID or not.

As it relates to being in your home, unless it’s medically necessary to have visitors in your home, such as a home health aide or therapists for treatment, try to limit visitors, and ideally take in no other outside visitors for the time being. If you have providers coming into your home, just be cautious, and speak with your providers to see what safety measure are being put into place by their respective agencies to try to maintain the safety of their safety and to keep you and your loved ones safe. Whether we are in the middle of a pandemic or not, it also remains just as important to ensure that you/your loved one are staying hydrated, are eating healthy, taking vitamins, medications as prescribed, and that you/your loved ones have a daily routine setup. Aside from eating, sleeping, taking the PD medications on-time, and keeping up with regular scheduled doctors visits, even if the visit is being done via telehealth, you/your loved ones routine should incorporate periods throughout the course of the day that include, but aren’t limited to, exercise, socialization, practicing daily self-care, brain stimulation, and things that you/your loved one enjoy.

As many of you already know, stress exacerbates the symptoms of PD so it’s important to stay busy and stay connected to reduce the risk of experiencing anxiety, depression, social isolation, loneliness, and changes in one’s cognition. There are many programs being offered right now on-line and over the phone for socialization, learning, support, stimulation, and leisure (perhaps even more than before the pandemic) so I would encourage you to learn more about what’s being offered and take advantage of all of these programs while they are available to you.

Furthermore, I would recommend speaking with your physician about getting the pneumonia shot, flu shot, and the COVID-19 vaccine now that that it’s slowly being made available to the general public. While the vaccine may not protect you from getting COVID, it will reduce the severity of your symptoms if you get virus, and more importantly, it will help reduce the risk of experiencing a more severe outcome.

What type of engaging activities do you feel are most benefit someone with Parkinson’s to boost mental stimulation and help with physical engagement?

The short answer is that I would encourage you to do activities that you enjoy and/or always wanted to try. Granted, some people may have physical and/or cognitive limitations that serve as barriers to doing something that they enjoy or once enjoyed, but perhaps that activity can be done in a different way that you never even imagined. With that being said, I’d encourage you to remain open-minded, focus on what you CAN DO, and inquire about your options with your care team or social worker in terms of ways in which you can enjoy these activities in a different way before closing the doors to these options. It takes time getting use to adjusting, adapting, and trying new things, but if this pandemic has taught us anything, it has shown us that we have the capacity to do all of the above, with time, patience, and compassion for ourselves as well as others.  

What resources would you have for folks for both mental and physical engagement, and for those with Parkinson’s?

The American Parkinson Disease Association, National Parkinson’s Foundation, Davis Phinney Foundation, Michael J. Fox Foundation, PMD Alliance, and Brian Grant Foundation are all hosting a variety of educational events, webinars, on-line exercises classes, support groups, symposiums, activities, podcasts, and on-line threads that you and your loved ones can take advantage of at this time. On these sites, you can also find information about COVID, resources, and the most up-to-date information regarding PD that may be useful to you/your loved ones.

At NYP-Brooklyn Methodist Hospital, we have a PD Exercise and Wellness Program where we are currently offering Chair Yoga Classes and Dance Classes, twice a month each, a bi-weekly PD Brain Training Class, monthly support group, and a caregivers support group that are all being held via ZOOM, are free, and are open to anyone living with PD and their caregivers. We also host an Information & Referral Center for the American Parkinson Disease Association so if you/your loved one are seeking resources in Brooklyn, please feel free to contact our hotline at 646-704-1792. If you/your loved one live outside of Brooklyn, you could always call the national APDA hotline at 1-800-223-2732 to get connected to resources within your community or state.

If you are living in NYC and are seeking resources to help you with basic necessities such as food, financial assistance, bills, housing, etc., I’d encourage you to contact 3-1-1 or contact your local community board to see what’s being offered within your area.

To learn more about how to use technology, I’d recommend checking out www.seniorplanet.org. They have a lot of on-line classes that could teach you how to use various technologies and on-line platforms. They also have a national tech hotline 1-1-920-666-1959 where they can assist you over the phone with setting up a slew of technologies right within your home. Don’t have a computer? No problem…you can get connected to a variety of activities, exercise classes, and support groups right over the phone with programs being offered by Mather (ph:1-847-492-7500), DOROT Without Walls (ph:1-877-819-9147), and Dance for PD (ph: 1-800-957-1046).

At the end of the day, it’s important to remember that we are all in this together and that you are not alone. If you find yourself feeling socially isolated, anxious, depressed, and/or lonely please do not hesitate to reach out to your friends, family, care team, local support group, and/or the national associations for additional support. Even if you are someone who has limited or even no supports, know that there are resources that are available to you so that you can stay socially connected, engaged with others, and not go thru anymore of this pandemic by being/feeling alone. After 10 months of being home, many of us are getting tired of it so it’s just as important to take care of your mental health as your physical health whether it’s by practicing daily self-care, going for therapy, reaching out to the NYS COVID-19 Emotional Support Hotline (ph: 1-844-463-9314) , NYC Well (ph: 1-888-692-9355) , or if things get really hard, the national suicide prevention hotline (ph: 1-800-273-8255) because if the mind gives up, your body will. Therefore, I encourage you to do the best that you can to take care of yourselves and to just take one day at a time because with thousands of vaccines already being administered over the past few weeks alone, there is some light shining at the end of this tunnel, and when this is all over, you will see how resilient you’ve truly become, not just thru this pandemic, but also with your own personal journey living with PD as well so keep going. This too shall pass….