Yesterday, the Michael J. Fox Foundation (MJFF) offered a webinar on the novel coronavirus, COVID-19, for the Parkinson’s disease (PD) community, featuring a panel of speakers including neurologists, an infectious disease expert, and MJFF executives. They discussed what we currently know about COVID-19 and PD, how social distancing may help prevent spread, and how to manage challenges and isolation, touching briefly on the potential impacts of the situation on PD research. The webinar ended with a Q&A session. We at Stanford Parkinson’s Community Outreach listened to the webinar and are sharing our notes.
The speakers on the panel included Dr. David Aronoff, an infectious disease expert; Dr. Katherine Leaver, a movement disorders specialist at Mount Sinai; Dr. Caroline Tanner, a movement disorders specialist at UCSF; Ted Thompson, JD, Senior VP of Public Policy with Michael J. Fox Foundation (MJFF); and Maggie Kuhl, Director of Research Communications with MJFF.
To watch this webinar, follow this link to MJFF where you can register and watch for free:
If you have questions for MJFF about content in this webinar, you can contact them via email or via phone at 800-708-7644.
Here are some reliable resources for up-to-date information on the COVID-19 pandemic:
We also recently listened to a conference call about coronavirus and caregiving. (This call was not specific to PD caregiving.) You can find our notes here.
Now… on to our notes from the webinar.
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Information on coronavirus for the PD community – Webinar notes
Presented by the Michael J. Fox Foundation
March 19, 2020
Summary by Lauren Stroshane, Stanford Parkinson’s Community Outreach
The speakers on the panel included:
- David Aronoff, MD: Director of the Division of Infectious Diseases, Vanderbilt University
- Katherine Leaver, MD: Assistant Professor of Neurology, Mount Sinai
- Caroline Tanner, MD, PhD: Professor of Neurology, University of California San Francisco, Director of the San Francisco Veterans Affairs PADRECC
- Ted Thompson, JD: Senior Vice President, Public Policy, The Michael J. Fox Foundation
- Maggie Kuhl: Director, Research Communications, The Michael J. Fox Foundation
The panelists began by addressing the most pressing question for many within the Parkinson’s disease (PD) community: are people with PD considered to be at higher risk from COVID-19?
As of now, we have no evidence that people with PD are at higher risk of falling ill or of developing severe illness from COVID-19. Many with PD are already considered higher risk solely based on their age (typically those over the age of 60 or 65 are deemed higher risk). That said, PD is a chronic illness and does affect many of the body’s normal functions; as we learn more about COVID-19, we will gain a better understanding of how it affects those with pre-existing health conditions.
Vulnerable populations include those over the age of 65, those with serious health conditions such as respiratory or heart disease, and those who have compromised immune systems. For instance, those who have received bone marrow or organ transplants, who are receiving treatment for cancer, or who have diabetes are all considered higher-risk. While young, healthy people are also being sickened by COVID-19 and do sometimes require hospital-level care for the virus, in general, most younger individuals are more resilient and not getting as severely ill. People of any age can be infected with COVID-19.
What do we currently know about the novel coronavirus?
- Symptoms typically include fever, cough, and shortness of breath.
- It is usually fairly mild but, in some cases, becomes serious and has caused deaths.
- It can lead to pneumonia in some cases.
- Older adults and people with serious medical conditions (heart disease, diabetes, and lung disease for instance) could be at higher risk for more serious illness.
- Over 200,000 cases have been documented around the world.
- A lot is still unknown about how the coronavirus spreads, but it may be possible to spread the disease even before symptoms arise.
Some within the PD community have asked how to determine whether symptoms are being caused by PD or by COVID-19. Fortunately, there isn’t much overlap between symptoms! Fever, cough, and shortness of breath are not typical features of PD. Those with swallowing issues may want to be particularly thoughtful because that could lead to coughing. In general, if you are concerned that you may have been exposed to COVID-19, watch for symptoms that are different than usual, out of the ordinary for you.
Can you say more about how the virus spreads and how we might test for it?
The novel coronavirus spreads via respiratory droplet, meaning tiny droplets from our mouths or noses that spread through the air when we sneeze or cough. Even in people who do not feel sick or display symptoms, small droplets sometimes come out of our mouth when we laugh or talk. Scientists believe it may be possible to spread the illness even if you are not having symptoms. This is why social distancing is so important to keep from spreading COVID-19! We are also learning that the virus can stay infectious on surfaces for hours to days – including your hands! This is why hand hygiene and not touching each other during greetings is essential.
Even if we feel well, we should ALL be operating on the assumption that we may be carriers, and protect others through isolation and hand hygiene as much as possible. Only leave your home for essential errands such as getting food or medication, and try to stay 6 feet apart from others. Don’t touch your face, and wash your hands as often as you can. Socialize with loved ones remotely, via phone or video.
Regarding testing for COVID-19, a major barrier to accurate testing is that the virus doesn’t seem to shed much before symptoms, so the diagnostic test probably doesn’t work well when we are asymptomatic. As has been widely reported, the United States is experiencing a severe shortage of the necessary tests
If you have symptoms consistent with possible COVID-19 infection, such as fever and dry cough, contact your healthcare provider to get their advice. In many areas, tests for the virus are only being administered to those who are extremely ill in the hospital or to healthcare workers, due to the shortage of available tests. Your doctor will be able to tell you where there are testing facilities and whether you will likely meet criteria to be tested. It is also important to consider whether the test results will change your behavior or treatment; there is currently no treatment available for COVID-19 beyond supportive care.
What measures is the government taking?
The news is developing on government response to the COVID-19 pandemic every hour.
The speakers emphasized that the federal government is fully galvanized at this point and has declared this a national emergency, allowing the distribution of funds to state and local governments to help with their response.
As of yesterday evening, Governor Newsom issued a statewide shelter-in-place order that aims to slow the spread of COVID-19 within California. New York followed suit today. Check with your county health department to learn more about the response in your area. There are nationwide shortages of essential medical equipment such as gloves, masks, and ventilators. Suppliers are working to step up production as fast as possible. As of March 6th, Medicare has agreed to cover healthcare delivered via Telemedicine. Physicians are being encouraged to practice medicine remotely.
What if I test positive for COVID-19 and I have PD?
Like any other illness that occurs on top of your PD, you may notice a temporary change or worsening of your PD symptoms, which is very common. If you have tremor or rigidity, this is likely to be worse. Non-motor symptoms such as anxiety can also temporarily worsen when you are ill. There isn’t a sudden worsening of your actual baseline PD, it’s just that your body is under increased stress due to the virus and has a harder time coping. Once you start to recover and improve, your PD symptoms should return to baseline.
Be aware that some cough and cold medications may interact with PD prescriptions, particularly Azilect (rasagiline), so check with your neurologist or primary care doctor first before starting new drugs, even if they are over-the-counter. In many cases, the doctor can recommend adjustments to make it safe.
PD will not necessarily make your recovery from COVID-19 slower; recovery time will depend on how healthy or frail you are in general.
If I have a fall or other new health issue, what guidance do you recommend in terms of seeking medical attention right now?
Know your regional situation and county/state guidelines. Be in touch with your neurologist or primary care doctor to get advice in that situation about how to proceed. Unless it’s a true emergency – then call 911!
Controversy about taking ibuprofen (Advil) and other NSAID medications
Non-steroidal anti-inflammatory medications (NSAIDs) such as ibuprofen (Advil) are commonly used to treat swelling, pain, and fever. A report came out of France suggesting that some COVID-19 patients who developed severe illness had been taking NSAID and advising the use of acetaminophen (Tylenol) to reduce fever instead. Acetaminophen (Tylenol) is a different type of drug, not an NSAID.
Because we don’t have access to the actual data, we don’t know much about the cases that were reported. It may be that patients who took NSAIDs on a chronic basis were at higher risk of severe COVID-19, rather than that the NSAIDs worsened their viral infection. We do not yet know whether there was correlation or causation. The current recommendation is that those who have been on stable doses of NSAIDs long-term do not need to do anything different right now. For those seeking to address new symptoms they are having now, it is always a good idea to limit the number of new medications that you add to what you are taking. Check with your physician and consider using acetaminophen (Tylenol) if you have pain or fever, but be cautious and make sure you don’t exceed the daily dose listed on the bottle or you could risk liver damage. Also be aware that many combination medications – such as Nyquil or Mucinex – also contain acetaminophen! Keep track of how much total you are getting, to prevent accidental overdose.
Supply of PD medications
Some are concerned that the manufacture and distribution chains of prescription medications may be disrupted during the pandemic. The Food and Drug Administration (FDA) is monitoring these issues and trying to prevent shortages from occurring. Your own personal supply is also an important concern; often, insurance won’t let you have more than a 30-day supply. However, a lot of insurance plans are waiving this currently, given the situation and to prevent extra trips to the pharmacy. And many pharmacies are offering free home delivery as well. Call your pharmacy and insurance to see if you receive a larger supply of your PD medications to have on hand.
Flattening the curve
You should reschedule elective or nonessential medical appointments or procedures for now. The goal is to avoid overwhelming the healthcare system by having large numbers of sick individuals at the same time. Slowing the spread (and hopefully decreasing the number of cases overall) will give the healthcare system the time to respond and provide care to each individual, not get completely overwhelmed all at once.
How can we adapt and manage challenges?
Lots of people with PD rely on family members, home health aides, or other caregivers for help. The panelists do not have a blanket recommendation in that situation; decisions should be on a case-by-case basis. Focus on mitigating risks: which is more concerning, the possible risk of exposure to COVID-19, or the need for help to maintain safety, quality of life, and mobility?
You can also discuss your concerns with caregivers to ask what measures they are taking to avoid infection.
For people in assisted living who may not have as much say over their environment, this can be a big challenge. You may need to speak with facility management to understand how they are dealing with COVID-19. What are their policies, and how are they handling staff who have symptoms or may have been exposed? Have there been any confirmed cases? At this point, all group living facilities should be limiting visitors and making sure soap, hand sanitizer, and personal protective equipment is available as needed
Keep moving! Keep up your exercise routine. Walking outside, as long as you can maintain distance between other people, is very beneficial. Be proactive about reaching out to friends and family virtually, via phone or video such as Skype.
How will COVID-19 affect PD research?
The pandemic will unfortunately slow down PD research temporarily. Research will now take longer to begin and to complete. The good news is that once COVID-19 is under control, trials should be able to resume.
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Question & Answer Session
Q: Can we take any supplements or probiotics to help prevent catching COVID-19?
A: Hopefully within the next 12-18 months we may have a vaccine. For now, as far as we know, there is theoretical benefit but no demonstrated benefit for taking these.
Q: For caregivers of someone with cognitive impairment or dementia, any tips for how to approach or explain what is going on?
A: Use simple language, give reassurance that you are still there for them. They will notice the disruption in their normal routine. Try to make some kind of daily routine or reassure them, reorient them with other topics and activities to provide some relief from the news.
Q: For someone who was in the process of being evaluated or gearing up for surgery for Deep Brain Stimulation (DBS), do you recommend they proceed?
A: This should be decided on a case by case basis, and depends on where you are located. Those who need an urgent battery replacement for their existing DBS system, for instance, will be prioritized. Those who were scheduled for surgery to get the DBS implant, this will depend on the surgical center. You may get rescheduled farther out to undergo the surgery when healthcare systems are not so overwhelmed.
Q: When will it be safe to go back to normal? What if you have been quarantined for 2 weeks and have no symptoms – is that long enough?
A: It depends on the region. Some areas of the country have implemented mandatory shelter-in-place policies, encouraging all residents to stay at home except for essential trips such as the grocery store or pharmacy. It is very important to listen to your county’s department of health for the “all clear.” Just because you have been under quarantine and doing fine, doesn’t mean you won’t be re-exposed if you go out and about.
- Try not to get wrapped up in the hysteria. Use reputable, non-biased news sources.
- Telemedicine is being jumpstarted by this crisis and this may be helpful long-term, particularly for many PD patients who have to travel long distances to see specialists, or have mobility challenges that make in-person doctor’s visits difficult.
- Focus on maintaining your safety and quality of life on a day-to-day basis.
- Remain calm; recognize that help is available through family or friends, healthcare professionals, and county services. A lot of services are being mobilized right now.