In early April, the Parkinson’s Foundation offered a Facebook Live presentation on hospitalization and Parkinson’s disease (PD), featuring Dr. Michael Okun, a movement disorders specialist at the University of. He answered questions about PD and hospitalization, provided tips about what to do if you or your loved one with PD is hospitalized, and discussed how to get the best care possible during an anticipated or emergency hospital stay. 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 at firstname.lastname@example.org.
Resources mentioned in the presentation:
Parkinson’s Foundation Hotline for questions: 1-800-4PD-INFO
The “Aware in Care” Kit, a free kit containing useful forms and handouts to help you get the best care if you do end up in the hospital:
For additional information and resources on Covid-19, visit this page on the Stanford Parkinson’s Community Outreach website.
Now… on to our notes from the webinar.
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Ask the Expert: Parkinson’s and Hospitalization – Webinar notes
Presented by the Parkinson’s Foundation
April 8, 2020
Summary by Lauren Stroshane, Stanford Parkinson’s Community Outreach
It is a time of great uncertainty, and speaker Dr. Michael Okun acknowledged that many are afraid of what may happen if they or their loved one with PD gets sick – how to get medical care, what will happen with their medications, will the doctor’s office be open? The focus of this presentation is on hospitalization in the context of PD and Covid-19. The hospital is not the safest place for PD patients, but sometimes it is necessary to go there. He recommended obtaining one of the “Aware in Care” kits mentioned in the summary introduction. The goals of the kit are to help you be prepared in the event of an unexpected hospitalization and to help communicate with the inpatient care team.
He drew comparisons between the current pandemic and the past poliomyelitis (polio) epidemics in the 1950s. Like now, individuals practiced forms of social distancing; churches and swimming pools closed. In 1952, polio struck 58,000 Americans, paralyzing 21,000 and killing 3000. These numbers are not even close to what we are experiencing today.
Iron lung devices kept many alive, as do our ventilators today. But neither represented the solution to either of these deadly viruses. Researchers first had to identify the virus responsible for polio, and determined that there were actually several strains of the disease. With this information, the scientists Jonas Salk and Albert Sabin led efforts to make the first polio vaccine available. He felt this was an important context through which to understand what is happening now with regards to Covid-19.
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Question & Answer Session
Q: Can my service dog come to the hospital with me?
A: Service dogs can provide incredible therapy to their people. He has never seen a patient turned away due to reliance on a service animal. In most areas, service dogs can still come to the hospital, but it’s a good idea to call the hospital you will be going to, to confirm it is okay and to find out what additional rules or precautions they may be taking given the Covid-19 pandemic.
Q: Will coronavirus treatments conflict with my PD medications?
A: Emphatically no – the main treatment for coronavirus right now is supportive care. This means supporting your body while it fights the infection, such as by maintaining isolation, helping you breathe, and keeping you hydrated. If you have Covid-19 but are still at home, of course you will need to limit your activity since you are sick, but Dr. Okun encourages you to move around a little bit every day as able – stretching every day, slowly walking from one room to the other, to encourage your lungs to keep moving.
If you do need to be hospitalized, you will receive supportive care, isolation, helping with your breathing, and ensuring that any other medical conditions you have are stable. Then it’s a lot of watchful waiting.
Q: Can I take hydroxychloroquine for Covid-19 or will it conflict with my PD medications such as carbidopa-levodopa (Sinemet) or rasagiline (Azilect)?
A: So far, we do not have evidence that any coronavirus treatments that we currently know about – which are preventative and supportive – would conflict with any PD medications. Hydroxychloroquine has been in the news recently as a possible treatment for Covid-19; it is typically used for treatment of certain types of malaria, as well as some auto-immune conditions such as lupus and rheumatoid arthritis.
Over the years, the speaker has seen certain drugs come up over and over and be tested for a number of different uses in multiple diseases, only to show limited or no results. Lithium for different degenerative conditions is one example; researchers spent a lot of money studying this drug, but it didn’t pan out.
Antimalarial drugs mess with ribonucleic acids, part of our DNA, and scientists theorize it could have an effect symptomatically on Covid-19 infection. But when it comes to hydroxychloroquine and other antimalarial drugs, the data so far is not encouraging. In addition, these drugs have serious toxicities associated with various organs, and can be dangerous themselves. Some individuals are going to get better anyway, whether they take hydroxychloroquine or not; thus, when they recover, they may erroneously attribute their recovery to the drug.
Hydroxychloroquine is also a drug that requires precise dosing and titration, depending on the condition and the individual being treated. So even if it did anything to help with Covid-19 infection, of which we have no evidence, it would be quite unsafe to take it without strict medical supervision. He has heard some people say, “Well, it can’t do any harm, so I’ll go ahead and try it.” But he wants to emphasize that this drug can in fact do harm, by damaging organs in the body.
All the experts Dr. Okun has spoken with are not excited about hydroxychloroquine for this disease. We do not know if it may conflict with PD medications as this has not yet been studied. For all these reasons, he emphatically discourages the use of hydroxychloroquine for Covid-19 right now. All 12 of the other neurologists at the University of Florida Medical Center agree.
Q: Should I avoid taking ibuprofen if I have Covid-19 or suspect I have it?
A: Some people with Covid-19 have taken ibuprofen and gotten better; others have done poorly. This is an association, but we do not yet have any evidence that it is a cause of individuals doing better. It is unlikely to be a significant concern, but for those who are worried, you can simply refrain from taking it. For those who have a high fever and want to avoid ibuprofen, you can simply take instead extra strength Tylenol (acetaminophen) or other types of NSAIDs (non-steroidal anti-inflammatory drugs) besides ibuprofen, such as Naproxen (Aleve).
Q: For those with Deep Brain Stimulation (DBS) who are preparing for a potential hospitalization, what do you recommend to get ready?
A: Great question! As mentioned, the Parkinson’s Foundation offers these very helpful resources for those preparing for hospitalization:
Order a free Aware in Care kit, which includes materials for those with DBS.
[Editor’s note — It’s also a good idea to bring your DBS patient remote in case any testing or surgery needs to be done that would require you to turn off your DBS system.]
Q: If I need to go to the hospital, I am really worried about not getting my PD medications on time as the staff is busy taking care of other patients. A lot of hospitals are no longer allowing visitors due to the pandemic, so I wouldn’t have anyone to advocate for me. Do you have any advice?
A: This is probably the number one concern for most PD patients who end up in the hospital, even under ordinary circumstances. During the Covid-19 crisis, this is particularly challenging as most hospital systems are overloaded and not allowing any visitors or family, due to safety concerns. A study by the Parkinson’s Foundation suggested that 75% of PD patients do not receive their medications on time, every time while they are hospitalized.
It generally isn’t that the nursing staff is unwilling or uncaring, but rather that they may not have experience specifically with PD and may not understand how essential it can be for PD patients to receive their dopaminergic medications as scheduled. Inside the Aware in Care kit, there are a lot of resources that will help educate the staff if needed.
If you respectfully ask the care team to re-write the orders for your PD medications to authorize you to have the bottle and dispense them to yourself on time, often they may be willing to do that, as long as there is no concern that you may have any cognitive impairment or memory issues. If not, simply explaining to the staff what happens to your PD symptoms if you not receive your medications right on time will help them to understand and make the best effort they can to prioritize the timing of your medications amongst their other responsibilities.
Q: Given that there are many stages of PD illness, are all stages considered to be at high risk and how is this determined?
A: The best that we know currently, PD patients have roughly the same risk of getting Covid-19 as those without PD. The immune system is working pretty normally in PD, as compared to those who are truly immunocompromised.
But once you get Covid-19, those with PD are at higher risk for pneumonia and other complications that can occur, because the lungs don’t work quite as well in PD. The same is true for any other respiratory illness as well. Even for those with young-onset PD, or who are early in the disease process, recovery is still going to be a bit more difficult.
The best thing to do is take precautions and try to avoid getting Covid-19 (or other respiratory illness) in the first place. He encourages everyone to get their pneumococcal vaccine (Pneumovax) if they haven’t had it already.
It’s better to get “cabin fever” rather than coronavirus fever! Do your best to avoid going out of your house; get groceries delivered if at all possible, and avoid any non-essential outings. If you do go out, avoid other people as much as possible, and wear a mask whenever you go out.
Q: I read the Washington State health department guidance on when to transfer patients out of an acute care setting and into a hospice setting. How do healthcare providers decide who lives and who dies, for instance, if there is a shortage of medical supplies or equipment?
A: In PD, when you experience an “off” state, you may not look as robust as when you’re “on.” The fear of some with PD is that those with PD will be judged as less likely to survive and won’t receive as much care. This is about resource allocation. Supply chains for essential equipment such as ventilators have been radically re-drawn to try to prevent such scenarios from happening. Dr. Okun feels that the states in general are doing a better job than initially at the start of the pandemic.
On an individual basis, if you are in a virus hot spot that is experiencing shortages, then it will come down to the physician who is treating you. No doctor wants to have to make these decisions. Dr. Okun recommended this article from The New Yorker that describes the experience of a physician confronting Covid-19 in the neuro ICU at a Manhattan hospital.
Q: As a movement disorder specialist, do you personally have any PD patients who have become infected with Covid-19? Have they needed hospital care?
A: He does have patients from his clinic who have been diagnosed with Covid-19. As of the recording, all of his PD patients had been able to stay in their homes and hadn’t required hospitalization. Many of them had already recovered. Take all precautions to avoid getting the virus, but if you do get it, remember that the virus isn’t necessarily a death sentence.
Q: If I do end up in the hospital and need a breathing tube, how will I get my oral PD medications?
A: One solution that has been used for this in the past, in patients who are on a ventilator for other reasons, is insertion of a yellow Dobhoff nasogastric tube that goes through the nose, down the throat, and into the stomach. The PD meds can be crushed and administered down the tube.
Some PD medications have a patch formulation. A feeding tube inserted into the stomach or intestines is sometimes necessary for some patients; keep in mind that a feeding tube can often be a temporary solution.
Q: If I do have Covid-19 symptoms but I’m still at home for now, and I have PD, what can I do to maximize my chances of being able to avoid hospitalization?
A: We absolutely want to try to keep you at home as long as it’s safe. First step: call your neurologist, who will come up with a monitoring plan (Dr. Okun, for example, calls each of his patients who have tested positive for Covid-19 every day to check on them). He or she will also determine if you should be tested or not, and if so, where you can get tested for the virus. In monitoring your symptoms, they will determine each day if it remains safe for you to stay at home. Those with PD may be prone to getting demoralized or apathetic, due to their neurologic illness, so it’s important to try to boost one’s outlook as well. Drinking plenty of fluids will help maintain a healthy blood pressure and keep your pulse from getting too fast. If you have a high fever, take Tylenol or ibuprofen (or another NSAID such as naproxen, if you are concerned about taking ibuprofen). Walk around a little bit in your home each day, as you are able, and stretch gently to help with your circulation and lung expansion. Don’t fatigue yourself, just don’t be completely stationary each day. Check in regularly with your healthcare provider, and above all, hydrate, hydrate, hydrate!