CORONAVIRUS DISEASE 2019 AND THE PD COMMUNITY Posted on March 20, 2020September 17, 2020 by Phil FranchinaSuggest a Topic | Subscribe News CORONAVIRUS DISEASE 2019 AND THE PD COMMUNITY APDA COVID-19 INFORMATION & RESOURCES: The American Parkinson Disease Association (APDA) is closely monitoring the Coronavirus Disease 2019 (also known as COVID-19) situation. We are eager to resume in-person events, groups and classes, but only when we are confident that it is truly safe to do so. Your safety is our number one priority and we are taking extra precautions due to the potential increased risk of COVID-19 complications for people with Parkinson’s disease. As such we will continue to offer virtual programming for your safety and convenience (see details below), postponing all in-person events for the remainder of the 2020 calendar year. While we know restrictions are being lifted at varying rates across the country, we do not want to take the chance of putting even one person in our community at risk. APDA closely monitors the guidance of local governments and will only begin in-person gatherings when we feel comfortable and confident that it is in the best interest of our Parkinson’s constituents and staff. 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. (Updated August 24, 2020) Para más información sobre el COVID-19, haga clic aquí APDA Parkinson’s disease and COVID-19 resources: COVID-19 Patient Assistance Program Application COVID-19 Patient Assistance Program Application (SPANISH) Free online exercise and therapy options Facebook LIVE Q&A about COVID-19 & PD: you can see the full video here Gilbert’s A Closer Look blog posts: COVID-19 and Parkinson’s disease: what is the international community learning? Q&A about COVID-19 and PD (recently updated) Great ways you can stay connected during these challenging times Importance of exercising at home during the COVID-19 era Maintaining mental health during the COVID-19 Crisis Online educational opportunities: Dr. Gilbert Hosts: Q&A sessions with experts: Monday, October 19, 12 p.m. ET — Dr. Gilbert Hosts: Being a PD Caregiver with Lianna Marie Thursday, November 5, 12 p.m. ET — Dr. Gilbert Hosts: Advances in DBS with Dr. Alon Mogilner (see list of previously recorded sessions below) Let’s Keep Moving with APDA: fitness-focused sessions with Q&A from participants. View previously-recorded sessions here. Dr. Gilbert Hosts recorded sessions: Dr. Gilbert Hosts: Gene Therapy and Parkinson’s Disease with Dr. Tim Greenamyre Dr. Gilbert Hosts: Intentional Optimism – A Conversation with Bill Rasmussen Dr. Gilbert Hosts: Stems Cells & Parkinson’s Disease with Dr. Evan Snyder Dr. Gilbert Hosts: How COVID-19 is Affecting PD Research with Dr. Joel Perlmutter (recorded session available here) Dr. Gilbert Hosts: Medication Management & COVID-19 with Cathi Thomas, MS, RN (recorded session available here) Dr. Gilbert Hosts: Advanced PD & COVID-19 with Dr. Pravin Khemani (recorded session available here) Dr. Gilbert Hosts: Introduction to Telemedicine with Dr. Jason Aldred (recorded session available here) Dr. Gilbert Hosts: COVID-19 & the Underserved with Dr. Natalie Diaz and Rosa Peña, MSW. This program is presented primarily in Spanish. (recorded session available here) Dr. Gilbert Hosts: DBS & COVID-19 with Dr. Jill Ostrem (recorded session available here) Basic Information About COVID-19 & the PD Community: Coronavirus disease 2019 (COVID-19) is a new viral respiratory illness which has been detected around the world, including the United States. Spread of the disease has been closely documented in the media, but for the most accurate information about the virus, please focus on reliable websites such as the Centers for Disease Control & Prevention (CDC). Many people with Parkinson’s disease (PD) may be wondering if this virus will affect them any differently because they have Parkinson’s disease. It is very clear from the data emerging from the ongoing pandemic that the risk of complications from COVID-19 rises steeply with age and with co-morbid medical conditions such as diabetes, heart disease and lung problems. We do not have similar data yet for people with PD. Although some small studies have been conducted that probe the relationship between COVID-19 and PD, there is much more information that we need to learn. PD is a very variable disease. Some people who are young and have very mild PD may not have any increased risk from COVID-19. However, we don’t know that for sure. We do know that there is no evidence that having PD makes you immunosuppressed and more susceptible to becoming infected with the virus. However, if you do get infected with the virus, it can make your course more complicated. What features of PD could increase complications from coronavirus? Although we do not have enough data regarding COVID-19 and PD specifically, we can extrapolate from experiences of people with PD and other viral respiratory illnesses PD and other viral respiratory illnesses PD motor- and non-motor symptoms can be exacerbated by any medical illness, including a viral respiratory illness. 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. Since COVID-19 is a viral respiratory illness, it would be reasonable to assume that someone with PD who contracts COVID-19 could experience these complications as well. 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. Because of these reasons, people with PD are always strongly encouraged to protect themselves from any infection as much as possible. Vaccines such as the flu vaccine and the Pneumovax vaccine (for bacterial pneumonia) are strongly recommended. (COVID-19 does not yet have a vaccine, but many are already in clinical trial). People with moderate 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, it is good practice for those with PD, because of age and because of their underlying PD, to consider themselves at increased risk of complications from COVID-19. Steps to take to prevent contracting COVID-19 Everyone should be taking serious precautions to avoid contracting the disease – even more so if you are at higher risk for serious illness from COVID-19 because of your age or because you have a serious long-term health problem. Per the information above, people living with PD should be taking all possible precautions. For those at higher risk from the virus (and really, everyone else), the CDC and the President’s Coronavirus Guidelines for America recommend: Frequent hand washing (this is the best way to stop transmission of this and most other viruses). Stay home as much as possible to further reduce your risk of being exposed, especially for older adults and those with underlying health issues. Take precautions to keep 6 feet of space between yourself and others, also known as social distancing. Wear a covering over your mouth and nose when you are with other people, especially if you are not able to maintain 6 feet of distance between you and other people Especially avoid close contact with people who are sick. Avoid touching your eyes, nose, and mouth. Cover your cough or sneeze with a tissue, then throw the tissue in the trash. Clean and disinfect frequently touched objects and surfaces using a regular household cleaning spray or wipes. If you have to go out in public, avoid any crowds, limit close contact and wash your hands often. Avoid all non-essential travel. Consider ways of getting food brought to your house through family, social, or commercial networks. It is important to note that the risk of COVID-19 varies depending on where you live in the country and this information is changing rapidly day by day. In some communities it is spreading more rapidly than in others so stay tuned to information from your local health authorities to determine specific risks, guidelines and/or restrictions within your community. What if you are quarantined? People who have had contact with someone who is a confirmed case of COVID-19, or who is diagnosed themselves with COVID-19 (and has disease mild enough that does not need hospitalization), will need to be quarantined for 14 days. This means you are confined to your home or a specific area in order to slow an infection from spreading. If you are under quarantine, then you are under even stricter limitations to your movement than what is recommended for older adults in general. In anticipation of possible quarantine, people should make sure now that they have enough medication and supplies on hand to get through a 14-day quarantine, just in case. 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.