The Dysautonomia Center has put together information for the MSA community about the current outbreak of the novel coronavirus, COVID-19.
COVID-19 is a global pandemic. This means that it is a contagious illness with sustained transmission throughout the world. The numbers in the tri-state area and in the US continue to increase, and will continue to increase for an unknown period of time, possibly months. Given this spread pattern, and the delay in the time it takes for the illness to manifest, you must assume that all locations are at risk of having the virus in the community, and it is present in any area you live. Considering this, everyone with MSA should change their daily lives immediately to prevent contracting or transmitting the virus to others.
According to the CDC, people at increased risk for serious illness from COVID-19 are older adults (>60 years old) and anyone with a serious chronic medical condition. Those with MSA are considered to be in the high risk group for serious illness including death from the infection.
In addition to being older and having a chronic illness, a significant proportion of patients with MSA are prone to developing pneumonia. Around 50-80% of MSA patients have problems with their blood pressure control, and a significant percentage also have problems with breathing, which may further affect their ability to recover. We already know that is difficult for MSA patients to recover from other infections (like influenza or a urinary tract infection), which is why we consider COVID-19 a very serious threat and measures for infection prevention should be followed.
As far as we know, symptoms of COVID-19 infection include: fever, cough, and shortness of breath. Additional emergency warning signs in someone with MSA might include new confusion or inability to arouse, and bluish lips or face. But this is an incomplete list. You and your caregivers are your own best advocate. So please be prudent, and seek help for any departure from your normal health pattern that is concerning.
Answers to Commonly Asked Questions, From Those with MSA and Their Families:
Should I still travel?
The answer is probably no. Avoid all non-essential travel, and if possible avoid all public transportation such as buses, subways, trains, flights. Especially avoid embarking on cruise ships. Also avoid non-essential activities such as volunteering, visiting community centers, going to parties, etc. The general advice is for people with MSA is to stay home, limit their contact with others, and exposure to public spaces and other sources of potential infection.
What about my upcoming doctors visit?
Traveling to the doctor’s office is a time when patients with MSA are outside. Given this spread pattern, you must assume that all locations are at risk of having the virus. Whether you choose to attend a doctor visit depends on a number of factors, including how severe your illness is and whether your visit is to seek urgent care of for a routine follow-up. As general advice, for routine follow-ups, we are recommending that all patients with MSA call their doctor for specific guidance. Many clinics now offer tele-medicine visits so doctors can see the patient through a live video link. It may be a good idea to have a blood pressure cuff at home, so that your doctor can instruct you how to take readings over the phone. If a patient with MSA is acutely ill, they should call their doctor immediately or go to seek urgent care. When out, diligent hand hygiene, avoiding touching public surfaces, and not transmitting the virus to the face in the eyes, nose, and mouth is extremely important.
What should I do if I am in a research study?
Many patients with MSA are currently enrolled in a research study or clinical trial. Most of the research protocols are being rapidly adapted so that patients can complete at least some of the assessments of the trial at home via phone or video visit. Patient’s taking part in a research protocol should call their local study coordinator and determine what the course of action will be. Patients with MSA may be asked to have blood work at a local laboratory (e.g. Quest) instead of having to go to a clinical trial site. Many of these decisions are being made on a case-by-case basis. It really depends on how prevalent the COVID-19 infection is at a particular location and this is an evolving situation. In you have questions, please, call the clinical trial site and ask for advice. Unless instructed otherwise, do not stop taking a study medication. Some medications may need to be tapered down and discontinued slowly. For others, it may be possible for the patient to remain on the study drug and complete the assessments over the phone. The clinical trial sites are prepared to answer these questions and work with you.
Is there anything else that can help prevent serious outcomes from COVID-19 infection?
MSA patients need to be careful to avoid other complications that would place them in the hospital. If you have orthostatic hypotension, using non-pharmacological strategies is something within your power to help prevent fainting and falls (see here: https://dysautonomiacenter.com/2017/05/03/orthostatic-hypotension-a-common-problem-in-parkinson-disease-multiple-system-atrophy-and-related-disorders/). Simple strategies such as setting a timer to remember to take anti-hypotensive medications, being extra vigilant to avoid falling in places like the bathroom with hard surfaces, and always sitting when you have symptoms of lightheadedness are important measures to adopt. Safe swallowing strategies to avoid aspiration and choking are also important precautions. Practice all measures of pulmonary hygiene you have been instructed on, which may include purposeful activity, deep breathing, coughing, and the use of an incentive spirometer or other tools. Staying as active as possible is also important consider going out to the garden or finding physical therapy exercises that you can safely do at home without risk of falling which can include recumbent-bicycling (among others) The bottom line is, adapt your plans and take additional precautions. We always want to keep patients with MSA out of the hospital, which now seems more important than ever.
What about inviting people home?
Patients with MSA should practice social distancing. During this outbreak and global pandemic when risk is so high, it is not prudent to invite people home unless absolutely necessary, as they increase the risk of carrying and transmitting COVID-19. It is possible people can transmit the virus even if they are not actively showing signs of illness, which happens when they unintentionally spread their saliva onto objects or other people through speaking, wiping their mouths, etc. Certainly, no one should enter the home if they have any of the following symptoms: cough, fever, or shortness of breath. Use phone calls or video calls to keep in touch with the grandchildren and other social meetings until the pandemic subsides. Some people with MSA may have home-health aids. It is important that these people, along with all members of the household, follow the CDC recommendations for being around someone who is high risk (listed below).
Is the use of antibiotics any use to prevent the infection?
No. Antibiotics have properties that either destroy bacterial cell walls or prevent them from multiplying. They are specific for different kinds of bacteria. They are not effective against viruses or COVID-19, which is a virus.
Are there any other recommendations for medications, vitamins or supplements (e.g., zinc) that are effective to boost the immune system or prevent contracting COVID-19?
None are known at this time. Being a new virus, there are no supplements, medications, or vaccines to either prevent or treat COVID-19 infection at this time. Some pharmaceutical companies are hurrying to develop vaccines, which may be ready in several months or a year or more to the public, depending on the results of clinical trials.
Do those with MSA have immunodeficiency?
No. The immune system in MSA is not much different from the general population. The total white blood cell count and all the different immune cells should be the same. However, the immune system can be weaker while battling other chronic infections (like a UTI). Once again, this is why it is important to optimize healthy routines and remind yourself of the safety precautions to take when self-catheterizing – for example.
Should I ask my home health nurses to wear special suits or protective gear while caring for me at home? Everyone in the family, not just visiting nurses, should use the same protective measures to reduce the risk of bringing pathogens including COVID-19 into the house. Infectious disease officials stress common-sense precautions for everyone to take that can significantly reduce the risk of transmission. These measures were outlined above. But in addition to these, if clothing or objects like purses and back-packs are touching surfaces in the community, they too can become vectors (carriers) for germs including COVID-19. When entering your house from outside, measures to reduce this risk include taking off your shoes at the door, leaving items like bags at the door or at least not placing them on the kitchen countertop or other areas frequently used, changing your clothes for use around the house after coming inside, and… wash, wash, wash! – your hands, commonly used surfaces, while preparing food, etc.
Further recommendations for those at higher risk:
- Have enough essential medication, groceries, and respiratory supplies (if using) available at home to last at least 1 month if quarantined, or have a mail-delivery service available to replenish them.
- Take everyday precautions
- Keep space between yourself and others (at least 2 meters or 6 feet).
- Avoid close contact with people who are obviously sick.
- Clean your hands often:
- Wash your hands often with soap and water for at least 20 seconds, especially after blowing your nose, coughing, or sneezing, or having been in a public place.
- Soap and water are the best option. If soap and water are not available, use a hand sanitizer that contains at least 60% alcohol.
- To the extent possible, avoid touching surfaces in public places – elevator buttons, door handles, handrails, handshaking with people, etc. Use a tissue or your sleeve to cover your hand or finger if you must touch something.
- Wash your hands with soap and water after touching surfaces in public places.
- Do not touch your face, nose, or eyes without making sure they are clean.
- Clean and disinfect your home to remove germs: practice routine cleaning of frequently touched surfaces (for example: walker frames, tables, doorknobs, light switches, handles, desks, toilets, faucets, sinks & cell phones).
- Avoid crowds, especially in poorly ventilated spaces like elevators, subways, other methods of public transportation. But also avoid large gatherings including parties, bat mitzvah celebrations, etc.
- Avoid all non-essential travel including plane trips, and especially avoid embarking on cruise ships. Also avoid non-essential activities such as volunteering, visiting community centers etc.
- During a COVID-19 outbreak in your community, stay home as much as possible to further reduce your risk of being exposed. If possible and allowed by your employer, consider working from home.
Finally, it may ultimately be difficult or impossible to completely reduce spread of pathogens in our homes at all times, as there are so many entry points. But the final step to infection is transmission to the person at risk. The person at risk should be the most important focus. It is most important for them to not transmit these pathogens to entries to their body including commonly-touched areas on the face: eyes, nose, mouth. This practice of hand hygiene could keep them safe now and become a good habit into the future to prevent other infections.
There is more information available online at the following links:
Centers for Disease Control and Prevention links:
People at Risk for Serious Illness: https://www.cdc.gov/coronavirus/2019-ncov/specific-groups/high-risk-complications.html
Emergency Preparation: https://www.cdc.gov/coronavirus/2019-ncov/community/home/index.html
What To Do If You Are Sick: https://www.cdc.gov/coronavirus/2019-ncov/about/steps-when-sick.html
World Health Organization
The following link includes sources for information on how to protect yourself, frequently asked questions, travel advice, situation reports, and more.
If you have other questions or concerns that are not specifically addressed in this document, please, contact the Dysautonomia Center.
Updated: March 17, 2020