How to Communicate Your 5 Parkinson’s Care Needs During a Hospital Visit

People with Parkinson’s disease (PD) are at a higher risk of hospitalization and face many challenges while in the hospital.

Hospital staff may not be familiar enough with PD to understand symptoms or realize they can worsen if you do not receive Parkinson’s medications on time. Careful preparation and clear communication can help minimize complications and recovery time.

People with Parkinson’s and their care partner can use the Five Parkinson’s Care Needs from our Hospital Safety Guide, listed below, to communicate PD needs during a hospital visit, whether planned or unplanned.

1.  I need my hospital chart to include my exact medications and match my at-home schedule.

Why it’s important: Hospitals often follow standardized medication schedules to ensure timely administration for most patients, but this doesn’t prioritize the complex medication routines that people with Parkinson’s follow.

What to look out for: Make sure the hospital records your exact medication times rather than the number of times per day you take them. Otherwise, the hospital will

follow their schedule instead of yours.

What to ask for: Ask to verbally review your hospital medication list and schedule with the hospital care team, confirming that they ordered medications according to the correct specific times. You can also request a printout to review and compare to your Medication Form.

2.  I need to take my Parkinson’s medications within 15 minutes of my usual schedule.

Why it’s important: Delayed or missed doses can lead to falls, difficulty participating in rehabilitation and being less prepared to go home after leaving the hospital.

What to look out for: Many hospitals allow nurses to give medications up to an hour before or after the scheduled time.

What to ask for: Remind nurses when it is almost time for your medications. Ask nurses to help you take your medications according to your home schedule. Describe your symptoms and how they are affected when you do not receive medication on time, every time.

3.  I need to avoid medications that make my Parkinson’s worse. These medications include those that block dopamine, sedatives and certain pain medications.

Why it’s important: Lack of dopamine in the brain is the primary cause of Parkinson’s movement symptoms. When dopamine-blocking medications are given to someone with Parkinson’s, they can worsen the symptoms they are given to treat and cause harmful side effects.

What to look out for: Your care team may prescribe new medications to treat nausea, confusion and psychosis (hallucinations and delusions) without realizing they can worsen Parkinson’s symptoms.

What to ask for: Share the list of harmful medications on the Parkinson’s Care Summary and ask for a safe alternative.

4.  I need to move my body as safely and regularly as possible, ideally three times a day.

Why it’s important: For people with PD, regular movement — often coupled with physical and occupational therapy — is important for controlling PD symptoms, preventing falls and minimizing complications.

What to look out for: In the hospital, your care team may limit your movement to keep you safe, especially if you are weak after surgery, have low blood pressure or have other issues that put you at risk of falling.

What to ask for: Ask for rehabilitation therapy (physical and occupational therapy) if you need help moving safely. If it is safe, continue daily activities, such as dressing, walking to the bathroom, sitting in a chair for meals and taking short walks

5.  I need to be screened for swallowing changes to safely maintain my medication routine and minimize my risk of aspiration pneumonia and weight loss.

Why it’s important: Difficulty swallowing, called dysphagia, is common for people with Parkinson’s. Minor swallowing issues can worsen and create severe complications during a hospital stay.

What to look out for: Staff may order “NPO” (nothing by mouth) with the goal of preventing severe swallowing-related complications, stopping Parkinson’s medications, along with all other food, liquid, and medications. This can make swallowing issues worse!  

What to ask for: Instead of stopping Parkinson’s medications, you want to avoid medication pauses. Ask the nurse about ways to continue Parkinson’s medications safely.

In addition to providing useful information and tools to help you advocate for your best care, and explain the Five Parkinson’s Care Needs to hospital staff, the Hospital Safety Guide provides:

• Forms for you to fill out with personal care details and medication schedules.
• Tips for care partners.
• Parkinson’s care information to share with the hospital care team.

Order and download the free Hospital Safety Guide right now.