Emergency Room Preparedness for People with Parkinson's

Norika Malhado-Chang, MD and Kristina Hart, DO

UC Davis Health, Department of Neurology

While it is always the goal to keep people with Parkinson's functioning as well as possible at home for as long as possible, there may be instances when this is not possible. In fact, people with Parkinson's (PwP) have higher rates of emergency room and hospital visits than those the same age that do not have Parkinson's. Common reasons for emergency room visits for PwP include: infections (pneumonia or UTI), falls (either with or without injury), gastrointestinal issues (such as trouble swallowing or severe constipation), worsening of Parkinson's motor symptoms, sudden changes in thinking (may include confusion, hallucinations, or severe anxiety), as well as other non-PD related conditions (such as heart disease, lung disease, or other medical problems). Many acute issues, such as those mentioned above, may result in sudden worsening of Parkinson's motor symptoms (such as rigidity and bradykinesia), can cause delirium or confusion, and can increase risk of falling. It is important to be prepared for the possibility of an emergency room visit or hospitalization.

There are some things that PwP can do to be prepared for an unanticipated ER visit. First, be sure to have a designated family member or friend who knows you well to be the point of contact in case you are not able to communicate for yourself. Keep your information, along with the contact information for your Parkinson's disease doctor, easily accessible, such as on a card in your wallet or purse. If you do have to spend time in the emergency room or be admitted to the hospital, it is very important not to miss your Parkinson's medications. In order to help make sure you get all of your medications, tell your doctors and nurses that you are taking medications for Parkinson's and that you need doses on time, every time. Keep a detailed and updated list of your medications in your wallet or purse. Include the name of your medication(s), the dosage amount, and the time(s) of day you take each dose. Be aware that not all Parkinson's medications are available in every hospital. For this reason, we recommend that you have some extra doses of all of your medications set aside in an “emergency pack” in case you need to make a trip to the hospital.

It is also important to know that some medications commonly used in the ER may not be safe for PwP. These include a class of medications called dopamine blockers. Medications that block dopamine are often used to treat conditions such as confusion or nausea but should be avoided in PwP. Safer medications for nausea in PwP include Ondansetron, Granisetron, or Trimethobenzamide. Medications that can be used safely for management of confusion or delirium in PwP include Quetiapine (low dose), Clozapine, or Pimavanserin. There may be instances in which patients are unable to safely swallow medications. In the event that this occurs, a temporary tube that is passed through the nostril and into the stomach may be necessary in order to administer medications. Furthermore, there may be some alternative forms of medications, like a dissolving form of carbidopa/levodopa, dopamine patches, and (in the event that you are already using these at home), dopamine injections that go under your skin.

If you have a surgically implanted device to treat your Parkinson's disease such as a Deep Brain Stimulator (DBS) or a Duopa pump, you should also prepare for how to handle these in the event of an emergency visit. If you have DBS, talk to your Parkinson's doctor ahead of time and ask them to teach you or a family member how to check if your DBS is on and how to turn it off if you need to. Be sure to bring your Patient Programmer with you to the hospital. There may be some instances (i.e, to obtain an EKG or surgery), in which you may need to turn your DBS off using your patient programmer. If you have DBS, you should not have an unplanned MRI without talking to your Parkinson's doctor or device representative first. Other types of imaging such as CT scans or X-rays are generally safe and can be performed in the emergency setting if needed. If you have a rechargeable DBS, you should also bring your charging system with you to the hospital. Keep the information for your device company available and give this to your doctors or nurses so they may contact the company if they need assistance. If you have a Duopa pump you should bring your pump and extra medication cartridges with you to the hospital. Some symptoms that suggest you are having a problem with your Duopa pump include abdominal pain, new nausea or vomiting, severe constipation, or signs of infection around your stoma. If you are experiencing these symptoms, be sure to tell the physicians in charge of your care. If assistance is needed managing your Duopa pump at any time, you or your providers may call Duo Connect at 1-844-386-4968.

Another special circumstance that PwP may encounter is the need to have surgery. It is important to know that some medications used to treat Parkinson's can interact with anesthesia and pain medications. One such class of medications is called MAOI-B's, including Selegiline (Eldepryl, Emsam, Zelapar), Rasagiline (Azilect), or Safinamide (Xadago), or medications used to treat depression and anxiety. Be sure to tell your surgeon and anesthesiologist the names of all the medications that you are taking. If surgery can be planned ahead of time, ask your Parkinson's specialist whether any of your medications should be held prior to surgery. Following surgery, restart your Parkinson's medications as soon as possible. It is also important that you get out of bed and work with a physical therapist as soon as possible. Another issue that can be particularly troublesome for PwP following surgery is slowed bowel motility resulting in severe constipation. We recommend you ask for medications to help you have regular bowel movements while you are in the hospital, especially if you are using any opioid medications to treat pain.

If you or your emergency room doctor or surgeon have any questions or concerns regarding the management of your Parkinson's while you are in the emergency room or admitted to the hospital, we encourage you to talk to your Parkinson's disease specialist or consult with a neurologist available at the facility.