At times, those of us with Parkinson's may need to elect to have a procedure done, or unexpectedly need to be hospitalized due to an injury, infection, or illness. Having a hospital action plan in place and ready to go will help to prepare your medical teams to give you the best treatment options for you as someone living with Parkinson's. You and your care partner will need to advocate for your own health - and it is best to assume anyone you are working with during a hospital stay is unaware of Parkinson's - in most cases they are.
Make sure you arrive at the hospital with a complete and updated list of your medications, dosages, and the times of day you take them. Be sure your hospital care team understands how important it is that you take your Parkinson's medications on time. You can keep track of your medications by downloading this form and completing it. Make several copies, and pass it to everyone you are working with in the hospital.
Your motor symptoms can worsen when you are coping with a medical illness in addition to your Parkinson's, so during a hospital stay, you might not be able to move as well as you usually can, and you might find that some symptoms, such as tremor, dyskinesia, and freezing worsen. Similarly, confusion and hallucinations can occur or worsen in the setting of medical stress or because of new medications, such as narcotics for pain or sedatives for sleep, even anxiety or agitation. Being aware that these symptoms might appear or worsen can help you feel more prepared and just as importantly, help you to inform others about what might occur and how to treat your symptoms.
Sometimes, treatments in a hospital cause difficulty with swallowing or eating. If this is the case, ask your providers about taking dissolvable carbidopa/levodopa tablets instead of regular pills.
The experience of staying in a hospital, whether planned or unplanned, is stressful for anyone. For people who live with PD, hospital stays can be especially challenging. Research shows that when people with PD are admitted to the hospital, they have longer stays and more often need rehabilitation afterwards, compared to people without PD.
Despite these challenges, your healthcare team wants to give you the best care. Confusion can be a major problem for hospitalized patients. This is unfortunately common and does not mean that your loved one had a major setback. Many things happen in the hospital that can contribute to confusion. Any infection in a person with PD can cause confusion. The introduction of new medications frequently results in disorientation and memory problems, especially with pain medications. Lack of sleep can also contribute to a confused state. For some people, especially for those who have intermittent confusion at home, being in a different or unfamiliar environment may cause these problems. Finally, confusion is common following a surgical procedure due to the combined effects of anesthesia and pain medications.
It is important that you have an advocate or team of advocates by your side throughout your hospital stay to help you safely navigate medications and reactions.
Click on each box to learn more about how you can be your best advocate during a hospitalization. Know what Anesthesia and medications to avoid, download our check-lists to help you prepare, and find out what questions you need to ask prior to being discharged.
Disclaimer: At PAA, our desire is to be a GO TO Resource for everything you need for the Parkinson's diagnosis to live a quality life with PD. We want to make sure you have all resources you need as you plan your journey with Parkinson's now and into the future so that you can reflect and discern what decisions you want to make with the appropriate insights to help you choose and build a plan that is unique as your journey. The PAA, nor the contents on this website, should never be a replacement for professional expertise and guidance from medical, legal, or financial professionals. Our goal is to equip you for those conversations. As such, the PAA cannot be held accountable for your choices and outcomes while navigating your Parkinson's condition.