Answering Your Questions about Parkinson’s disease and Coronavirus Disease 2019 (COVID-19)

Answering Your Questions about Parkinson’s disease and Coronavirus Disease 2019 (COVID-19) – Updated

With the continued spread of Coronavirus Disease 2019, also known as COVID-19, in the United States and throughout the world, Parkinson’s disease (PD) patients have been reaching out and asking questions and we’re here with the answers you need. As such, we have updated our blog post again with additional questions that have come in, along with some new information that has been released.  We will continue to add new questions as needed, so keep checking back. The newest questions are listed first, and some general updates have been made throughout.

Additionally, please read APDA’s general information for the PD community about COVID-19. The 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). In addition, the President’s Coronavirus Guidelines for America can be found here.

Here are some of the questions I have received from our PD community about COVID-19 through our Ask A Doctor website portal (newest questions at the top):

Q: Can the stress of the COVID-19 situation make Parkinson’s symptoms worse?

A: Stress can definitely increase PD symptoms. I have discussed the relationship between stress, anxiety and PD in general before and COVID-19 has certainly created a very stressful environment for everyone right now. It is being felt much more acutely by older adults and those with chronic medical issues, members of the population who have an increased risk of complications from COVID-19 infection. Many people with PD experience anxiety as a non-motor feature of their PD, and many are reporting that anxiety has increased during this very tense time. To help minimize stress and normalize the current situation, be sure to establish daily routines, continue to exercise at home, and stay connected with family and friends online or on the phone.  Also, take a break from the non-stop news coverage of the pandemic and enjoy a good book or fun TV show.

In addition to a potential worsening of PD symptoms from the overall stress of the COVID-19 situation, people with PD should also be aware that PD symptoms would also be expected to worsen if they were to contract the COVID-19 virus. In general, it is very common for PD symptoms to get worse when there is any inter-current illness. In the pre-COVID era, if PD symptoms worsened suddenly, a clinician would be suspicious that an infection was brewing such as a UTI, the flu or bacterial pneumonia. So there is every reason to believe that symptom worsening would also occur with a COVID-19 infection as well.

Q: My husband is prone to urinary tract infections (UTI), which have often led to hospitalizations in the past. I really want to avoid the ER and the hospital now because of COVID-19. Is there anything I can do?

A: I agree that avoiding ERs and hospitals if possible is very important in the time of COVID-19, to keep your husband away from those who are possibly infected. I would definitely talk with your husband’s neurologist and urologist now to come up with a plan. For example, should symptoms develop, you may be able to have a telemedicine visit with your husband’s neurologist or urologist (via video chat or phone call) at which time antibiotics can be prescribed for your husband to take at home. His doctors might consider putting him on prophylactic antibiotics to try to stay one step ahead and prevent the next UTI. However, if in the end your husband does need to go to the ER, rest assured that ERs and hospitals are doing everything in their power to isolate possible COVID-19 patients from those who are in the hospital for other reasons and taking extraordinary precautions to keep all patients and staff safe. It will be important for his UTI to be treated, so you may have to take him to hospital if that is what is needed.

Q: If a PD patient is on a ventilator due to COVID-19, how do they get their Parkinson’s medications?

A: This is a huge challenge anytime someone with PD is not able to take their medications when hospitalized. Often in this situation a tube is placed through the nose and into the gastro-intestinal tract for delivery of medication and food. The doctors will assess each situation individually to determine the best way to proceed. It is important for you to inform the hospital about all medications the person is taking as well as the dosing/timing so they can make the best decisions for the health of the patient.

Q: I am a nurse in a hospital and my husband is 71 and has moderate PD. Is it OK for me to be around him?

A: As a health care worker, you are at greater risk than the general population to be infected with coronavirus. You are likely interacting with a lot of people in the hospital setting and even if none of them have been diagnosed with COVID-19 because so many people have mild symptoms or no symptoms when they are infected, you could still bring the virus back to your husband and not know it. This is a challenging situation and there is not a clear or easy answer about what to do. This virus is affecting so many things and so many lives, often in ways we haven’t thought of. Every day there are new scenarios that we’re trying to navigate, and it can be hard to know the best way to proceed.

Just like you have a protocol at the in the hospital, you might want to create a careful protocol at home. Of course, when you return home from the hospital, be extra vigilant with hand hygiene and disinfect everything you touch.

If you are close to your husband’s age, you yourself are in a higher risk group for complications from the virus. It might be wise to talk with your employer about the difficult situation you are in and see what they can suggest to help you. It is very possible that you are not the only employee with a high-risk family member at home.

Q: Many hospitals are limiting surgeries to urgent cases only. Patients with PD who have deep brain stimulation (DBS) may require battery replacement during this health crisis and they may have anxiety that they will not be able to get this surgery if needed. What should a person with DBS do?

A: If the battery for a DBS system stops working completely and the DBS is no longer effective, a person with PD may experience a significant return of PD symptoms. Not only would this be very uncomfortable and potentially dangerous in its own right, but could put this person at increased risk of complications were they to be exposed to COVID-19. I would talk with your neurosurgeon now to clarify the policy of your hospital. In many hospitals, both the surgeon and patient need to agree that the surgery is “elective” before it is postponed. I would make a strong case that replacement of a DBS battery, if it is at the end of its life, is not an elective procedure. However, if replacement of the DBS battery is not possible, then PD medications would need to be increased until a replacement is possible. Talk with your neurologist now about what changes in medications would be reasonable to try if your DBS fails.

Q: Who is more at risk from coronavirus: a person with PD and no other health issues, or someone with diabetes, heart disease or lung problems?

A: Without more specific information about PD and COVID-19, it is difficult to evaluate this question. 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.

PD is a very variable disease. Some people who are young and have very mild PD may not have any increased risk from coronavirus. However, we don’t know that for sure.

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, 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. 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 one is already in clinical trial).

People with more 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 from COVID-19.

Q: I am a 70-year-old woman who was diagnosed with PD four years ago.  I am scheduled for an upcoming colonoscopy. My father had colon cancer and I have an increased risk for colon cancer too. Do you think it is safe for me to interact with the medical staff at this time or should I postpone the procedure?

A: It’s possible that your doctor’s office may cancel this procedure, because of the coronavirus situation. But if it does not, it is important to note that you are at higher risk of complications from COVID-19 — because of your age and because of your PD as well.

A colonoscopy suite is not a particularly high-risk place for coronavirus (as opposed to an ER for example), but it is a public place, so it is more problematic than staying at home.

This is a situation in which you have to weigh risks and benefits and get the input of your personal physicians. The decision of whether to proceed with the colonoscopy would need to take into account several things:

  • your personal risk of colon cancer given your family history (which should not be ignored in the concern for coronavirus)
  • your overall health aside from your PD
  • whether you live in an area in which coronavirus is now rapidly spreading where extra precautions should be taken
  • Your medical teams’ opinion of the urgency of the procedure

If the procedure can be safely postponed, then it might be wise to do so.

Q: I swim regularly in my home pool to help with my PD symptoms. Should I stop doing that now because of COVID-19?

A: Swimming pools have to contend with all sorts of infectious agents that people can transmit to each other and therefore pools are always chlorinated or have some other substance in the water that kills pathogens. However, because COVID-19 is a new virus, we can’t be sure of how it behaves in a chlorinated pool. In the absence of data specifically about COVID-19 and swimming pools, current policies rely on the fact that COVID-19 has similar biochemical and physical properties to other members of the family of coronaviruses that are effectively killed by current swimming pool disinfection policies. COVID-19 and other coronaviruses are enveloped viruses, surrounded by an outer lipid membrane which makes them easier to be killed than non-enveloped viruses (such as poliovirus). The assumption therefore is that current swimming pool disinfection techniques are sufficient to kill COVID-19. As more is understood about COVID-19, we will have more information to answer this question.

Q: Should I try to stay away from my grandchildren because of COVID-19?

A: According to the CDC, children are not more susceptible to COVID-19 than adults, and when they are infected they typically have mild symptoms (or no symptoms at all). A child who is infected with COVID-19 therefore may not appear ill, while still being able to transmit COVID-19 to someone else. This makes it complicated for older adults who want to be near children. In addition, children are less likely to practice good infection control procedures like covering their mouth and nose when coughing and sneezing, throwing away dirty tissues and washing or sanitizing hands frequently. For these reasons, as much as possible, it is advisable for older adults or people with underlying medical issues to stay away from children in general, and especially those who have any symptoms of respiratory illness.

Q: Is it ok to go to my PD support group or exercise class? Do I really need to stay home?

A: In most cases, yes, you really need to stay at home with your immediate family only, as much as possible. You are encouraged to take walks outside if you stay 6 feet away from others. The CDC revised their guidelines and recommend that in-person events that consist of 50 people or more throughout the United States get postponed or cancelled” to help prevent transmission of the virus (through early May). They also recommend avoiding “gatherings of more than 10 people for organizations that serve higher-risk populations”. The President’s Coronavirus Guidelines for America takes it a step further and states “If you are an older person, stay home and away from other people.” The same is true for those with underlying medical conditions. APDA has cancelled all groups, classes, and events through May 11. Extraordinary times call for extraordinary measures.

Tips and Takeaways

  • COVID-19 is a novel virus and information on how it behaves is continuously evolving.
  • Most people who are infected with COVID-19 will recover completely. However, older adults and those with underlying medical issues are at an increased risk of developing serious outcomes from COVID-19 as compared to those who are younger and healthier.
  • It is incredibly important for everyone, especially the PD community, to follow all recommended risk-reduction guidelines and adhere to local regulations.
  • PD symptoms such as balance problems/falls, swallowing difficulties, urinary dysfunction and weight loss contribute to general frailty and increased risk of infection, including increased risk from COVID-19.
  • Talk with your doctor about any concerns you have about COVID-19.

 

 

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Dr. Rebecca Gilbert

APDA Vice President and Chief Scientific Officer

Dr. Gilbert received her MD degree at Weill Medical College of Cornell University in New York and her PhD in Cell Biology and Genetics at the Weill Graduate School of Medical Sciences. She then pursued Neurology Residency training as well as Movement Disorders Fellowship training at Columbia Presbyterian Medical Center. Prior to coming to APDA, she was an Associate Professor of Neurology at NYU Langone Medical Center. In this role, she saw movement disorder patients, initiated and directed the NYU Movement Disorders Fellowship, participated in clinical trials and other research initiatives for PD and lectured widely on the disease.

A Closer Look ArticlePosted in APDA News, Living with Parkinson's, Risk Factors for Parkinson's

DISCLAIMER: Any medical information disseminated via this blog is solely for the purpose of providing information to the audience, and is not intended as medical advice. Our healthcare professionals cannot recommend treatment or make diagnoses, but can respond to general questions. We encourage you to direct any specific questions to your personal healthcare providers.