In mid-May, the Parkinson’s Foundation hosted a Facebook Live presentation answering questions on Covid-19 and Parkinson’s disease (PD). The speakers included two movement disorders neurologists: Dr. Alessandro Di Rocco and Dr. Ritesh Ramdhani. They discussed what they have learned so far as movement disorders specialists practicing in New York on the front lines of the Covid-19 pandemic, in terms of risks, symptoms, and specific concerns for those with PD, and answered audience questions. We at Stanford Parkinson’s Community Outreach viewed the webinar and are sharing our notes.
This webinar was recorded and can be viewed here.
If you have questions about the webinar, you can contact the Parkinson’s Foundation by phone at 800-4PD-INFO (473-4636) or via email at firstname.lastname@example.org.
The speakers mentioned some resources from the Parkinson’s Foundation for those with PD who are concerned about Covid-19:
- The free “Aware in Care” hospital kit, which contains useful tools and information in case of a hospital visit. To order your kit for free, visit here.
- A detailed web page on what we know about Covid-19 and PD.
Now… on to our notes from the webinar.
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Covid-19 & Parkinson’s: Lessons learned from the frontlines – Webinar notes
Presented by the Parkinson’s Foundation
May 13, 2020
Summary by Lauren Stroshane, Stanford Parkinson’s Community Outreach
Both speakers, Dr. Alessandro Di Rocco and Dr. Ritesh Ramdhani, are neurologists at Northwell Health in New York. They discussed what they have learned so far from treating people with PD who contracted the novel coronavirus, Covid-19, and answered audience questions.
So far, what we understand is that people with PD are not especially vulnerable to catching Covid-19. Risk factors that we know, such as age, maleness, are also more commonly occurring in those who have PD, but there is nothing specific about PD that will make individuals more vulnerable to contracting Covid-19.
However, there is the possibility that those with PD may have a different presentation of their Covid-19 symptoms than the majority of individuals. They are also at risk to have non-motor and motor symptoms be exacerbated temporarily due to illness. It is important to have a “quick and robust” management of their PD symptoms while they are battling the virus.
Q: How many people with PD have had Covid-19 in the US?
A: We don’t know yet; we know of some patients with PD who were hospitalized for Covid-19, but it is too soon to know what follow up and know what complications have been. Although we don’t have statistics yet, it comes down to the individual in every case. Dr. Di Rocco mentioned a patient of his who is in his 80s and just recovered fully from Covid-19.
Q: Do those with PD experience different symptoms of Covid-19 than others?
A: Any infection in PD may manifest as worsening PD symptoms even before the infection is necessarily detected: extreme tiredness, confusion, worse tremor, balance, or dyskinesias.
If there is any sudden change in your PD symptoms, even if no fever, shortness of breath, or coughing, this may be an early sign of Covid-19. PD itself doesn’t compromise the immune system; any resulting pneumonia is about as likely as for someone without PD. But having the symptoms of PD poses a greater challenge as far as recovery, especially for those who have had PD for a long time and may be more frail.
The sooner you recognize the symptoms and get in touch with your doctors, the better your likelihood of doing well even if you do get sick. Remember that most people who contract Covid-19 recover and do well. We have no evidence that mortality is worse among people with PD who get Covid-19 than among the general population.
Staying on top of your PD medications is especially important during this time, and if you are hospitalized. Dopaminergic medication, such as Sinemet, helps you breathe, allows your muscles to move well and your body to stay active.
In the event of hospitalization, bring your PD medications with you, as well as your cell phone and charger, since most hospitals are not allowing visitors currently. The Aware in Care kit mentioned in the summary intro can be very helpful for informing the inpatient team about your special needs relating to PD.
Q: Do you see any long-term changes in office care due to Covid-19?
A: Yes, and some of those changes may be permanent or last a long time. Telehealth is likely here to stay, or at least will become more common than it was in the past. Most clinics are closed in NY, or only seeing patients for very urgent matters. No family members are allowed into appointments. They have temporarily suspended new DBS surgeries, though urgent battery replacements can still take place.
Offices and surgeries will start to resume but it will likely be different when things reopen, with greater emphasis on telemedicine. There are challenges but also benefits from telemedicine; Dr. Di Rocco acknowledges he prefers the human contact and misses seeing patients in person. This may be partly due to his age, he says; but he recognizes these are changes that need to be in place, likely for months to come, to keep people safe.
Dr. Ramdhani mentioned it also gives the opportunity to consider the patient more in their home environment; we can try to tailor care a little more depending on their home situation.
Q: What has the PD patient experience been like in NYC? Do you think this will become more common across the country?
A: The infection can present as a typical respiratory illness in someone with PD, or it may manifest as worse PD symptoms only: worse fatigue, cognition, or motor symptoms. Again, it is important to contact the healthcare provider as soon as possible. PD patients are not at higher risk of getting Covid-19, but depending on the severity of their PD, may have a slower recovery.
The rest of the country can learn from NYC experience as they experience waves of cases. We are learning more about Covid-19 all the time and have come a long way in our understanding of its transmission and treatment.
Q: What is your opinion about remdesivir, which is currently in a Stage 3 trial?
A: The speakers are hopeful that this drug will help us treat and manage the disease. Not every drug is useful for every person, however. We do not yet know if any of these drugs have any unintended effects on those with PD; it is too soon for this to have been studied at all. Some drugs given for other indications can worsen PD symptoms, negatively impact those with PD or have interactions with any PD medications. Hopeful remdesivir will work; as far as we know, there have not yet been any concerns or interactions for those with PD.
Q: Should those with PD get antibody tests even if they have no symptoms, or should they wait for a more conclusive antibody test before they get checked?
A: Testing for Covid-19 is essential to restore normalcy in our society. Right now there are many antibody tests coming available on the market, but not all have gone through rigorous validation. This means we do not know how accurate they are. Getting antibody testing will be important to get a sense of who is at risk or who may be at lower risk, but for now, there isn’t widespread accessibility of well-validated tests. We also do not yet know if those who show antibodies to Covid-19 are protected from re-infection with the virus, or for how long. For now, follow the CDC’s guidelines and local state board of health recommendations. Keep wearing your mask, and take precautions even if you test positive!
There is also no consensus yet on the best way to reopen; guidelines between states vary quite a lot. Safety should always come first – stay on the safe side, even if businesses in your area start to reopen.
Q: Should I keep attending telehealth appointments? Is it worth it?
A: Telehealth is the way that we can currently provide care. It is an Important vehicle for providers to be able to manage motor and non-motor complications. He recommends all patients follow up with their neurologist or other provders to continue their follow up care as able
You do not want to go many months without seeing your physicians and develop other issues
Q: How should people with PD be reintroduced back into visits with family and friends?
A: Go by the recommendations of the CDC and your local health officers about when it is safe to start visiting loved ones again. Use your best judgment; safety first; be cautious. Don’t throw a big party the minute restrictions are relaxed, but rather, take it gradually. Maybe start seeing grandchildren again, but no hugs and kisses yet.
Q: Any recommendations for precautions for those with PD for post-Covid-19 returning to rehab therapies?
A: Similar to the previous answer. Relaxing social distancing guidelines too soon could result in a resurgence of cases. There are many asymptomatic people out there who are unaware they are spreading it. Returning to outpatient rehab will have to be a gradual process, maintaining some precautions such as distancing, masks, etc. The same goes for other types of groups – support groups, exercise classes.
If there is a message they have learned in New York, it’s to “stay strong”: this means maintaining a strong baseline function (sleep, exercise, good nutrition and hydration), which will give you the best immune function to fight off Covid-19 if you do get it. Do your exercises at home even if you can’t go outside. Maintain a routine and stay on top of your meds. Use your phone, facetime, etc to connect with loved ones, community, and healthcare team. Tend to your mental health.
Remember that the vast majority of people, even those who end up in the hospital for Covid-19, do recover and do well.