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People with Parkinson's disease are at a higher risk of hospitalization than people without PD. They often face many safety challenges while in the hospital. It is important for all people with PD to be aware of the risks, prepare ahead of time, and know how to advocate for their needs while in the hospital.
This year alone, four out of every 12 people with Parkinson's disease will be hospitalized. Of those hospitalized, three out of four will not get the right medication on time. Two out of three will have complications as a result.
Parkinson's symptom management can be even trickier in the hospital because people often do not get enough movement opportunities. Parkinson's medications may not be given following the at-home schedule. Medications that worsen PD are sometimes prescribed.
These issues can lead to additional complications and set up a vicious cycle that puts you at risk for falls, swallowing challenges, muscle deterioration, medication side effects, mental and physical decline, or decreased independence. This is known as the symptom spiral.
Since hospital staff may not be experienced with PD, people with Parkinson's and care partners often need to play an active role in advocating for their needs.
Once you arrive at the hospital, one, speak up. Plan to communicate the urgency of your Parkinson's needs with each unit. Remind staff you have Parkinson's disease before each procedure or surgery. And if new medications are being prescribed, let your care team know if you have device-specific needs.
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Two, contact your Parkinson's doctor. Let your doctor know why you are in the hospital and ask about the best way to reach out for extra support if needed.
Three, stick to your regular medication schedule. Delayed medications can lead to severe complications. Explain the importance of receiving your medications within 15 minutes of your usual schedule. Ask to use your own supply if the pharmacy doesn't carry your medication or you are waiting too long for your next dose.
Four, ask for referrals to other specialties such as physical, occupational, and speech or swallowing therapies, neurology, or nutritional services. Each specialty has a different role supporting your needs.
The five Parkinson's care needs highlight the most important elements of PD safety in the hospital. Share these with hospital staff as soon as you can.
Need one: I need my hospital chart to include my exact medications and match my at-home schedule.
Need two: I need to take my Parkinson's medications within 15 minutes of my usual schedule.
Need three: I need to avoid medications that make my Parkinson's worse. These medications include those that block dopamine, sedatives, and certain pain medications.
Need four: I need to move my body as safely and regularly as possible, ideally three times a day.
Need five: I need to be screened for swallowing changes to safely maintain my medication routine and minimize my risk of aspiration pneumonia and weight loss.
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If you have trouble communicating your needs or have a care concern, one, discuss your concern with your primary nurse. Two, involve the charge nurse. Three, ask to meet with a hospital doctor who may consult with the hospital neurologist or contact your Parkinson's doctor.
Four, if needed, ask for your concern to be noted in your chart and speak with a patient representative or advocate. Be honest, direct, and respectful when communicating your needs.
Assume your care team is doing the best they can with the information and tools they have. Their goal is to help you get better and return home safely.
The Parkinson's Foundation Hospital Safety Guide is designed to make this process as easy as possible. To get your free copy and explore additional tips and printouts, visit Parkinson.org/HospitalSafety.
