From Fear to Care: How to Address Parkinson’s Hospital Risks

People with Parkinson’s disease (PD) are at a higher risk of hospitalization and face many challenges while in the hospital. It is important for all people with Parkinson’s to be aware of the risks, prepare ahead of time and know how to advocate for their needs while in the hospital.  

To raise awareness of how quickly things can go wrong, we highlight three hospital experiences from people with Parkinson’s below. The Parkinson’s Foundation is committed to helping people like Cindy, Ron and Julie, receive better hospital care. Get to know them and their stories. We’re thankful for their willingness to share their share to help educate and empower our community.  

Cindy’s Story  

Cindy prepared for a routine surgery. An avoidable medication interaction still caused hallucinations. 

I recently had a total knee replacement. Beforehand I did everything I was told that was needed to prepare. I had gone to my primary doctor and my neurologist to get clearance and felt calm going into surgery.  

My neurologist wrote notes on what medications I should not take. But when I went to the hospital for my surgery, the nurse doing my intake didn’t know I had Parkinson’s disease (PD). Not one person I spoke to had looked at the notes my doctor sent. I was left feeling fearful and alone.  

I went in thinking maybe there would be some glitch during my hospitalization, but it wasn’t just one thing. I didn’t get my Parkinson’s medications when I woke up from surgery, they didn’t have my medications available that night and they gave me a medication that I should have never been given, which led to a major reaction. 

After being discharged, at home I took the pain medication prescribed at the hospital and became delirious. I was hallucinating and had a 103-degree fever. My husband and I didn’t know what was wrong. I found out later that I had a medication interaction caused by Serotonin Syndrome, which is rare but can be fatal. This was a worst-case scenario for me and set my recovery back.  

I was shocked that this happened even after everything I did to prepare for my surgery. I am a PD advocate, and I am very involved in the Parkinson’s community. I heard bad hospitalization stories before, but you just don't realize how bad things can be until they happen to you.  

I’m happy to share that since this happened, I spoke to the patient liaison about my experience, and have since joined their patient advocacy council. Through participating I will be able to help the hospital address the problems I experienced and help ensure that others will not go through what I went through.  

Cindy shares her story in this video: 

Julie’s Story  

An unexpected reaction to THC sent Julie to the emergency department in an unknown city. When she arrived, the team didn’t believe she had Parkinson’s.  

Julie was on a cross-country road trip with her daughter when she began experiencing severe dyskinesia and cramping. This was a fairly common experience for her, and sometimes, she used THC (a form of medical marijuana) to find relief. However, when she did this time, she became unresponsive, and her daughter had to pull over to call 9-1-1.  

When they arrived at the hospital, the emergency room (ER) team didn’t believe her when she said that she had Parkinson’s disease. They refused to perform any tests or allow her to take her Parkinson’s medications. Unfortunately, it took several hours to convince the medical team that Parkinson’s medications were essential.  

Once they realized that her Parkinson’s medications were not street drugs, she was finally allowed to take them get her symptoms under control.  

Read Julie’s Full Story Now

Ron and Amy’s Story 

Ron and Amy prepared for an emergency room visit. But when Covid-19 sent Ron to the hospital it still took too long for him to receive his Parkinson’s medications. 

Ron and Amy experienced an unthinkable hospital stay in 2023 after Ron, diagnosed with Parkinson’s in 2019, developed a severe case of Covid-19.  

Prior to the emergency visit, they prepared for the unexpected with resources from the Parkinson’s Foundation Hospital Safety Guide. They asked for these materials to be scanned into his electronic chart, knowing that it was essential that the medical team understood Ron’s diagnosis and the importance of administering his Parkinson’s medications in a timely manner.  

Despite being assured that Ron’s chart had been updated, they later learned that this had not been the case — the medical team was unaware of his Parkinson’s diagnosis. 

Despite Amy’s pleading, Ron did not receive any of his Parkinson’s medications on time. After going into respiratory failure, a life-or-death situation, a new doctor took over, and made time to listen to Amy. He agreed to administer Parkinson’s medications and took great care of Ron for several days throughout the recovery period. In the end, Ron recovered and the new doctor declared that by advocating for Ron’s Parkinson’s needs, Amy had made him an even better doctor.  

Read Ron and Amy’s Full Story Now

Hospital Safety Tools Designed to Help  

Prepare for your next planned or unplanned hospital stay with the below resources designed to help you.  

1. Share the Parkinson’s Care Summary for Health Professionals with attending hospital staff (from nurses to doctors) to alert them of medications to avoid and safe alternatives.    

2. Keep the Medical Alert Card in your wallet so that you have it in case you need to show that you have Parkinson’s.  

3. Bring your Doctor’s Letter: Parkinson’s Hospital Care Needs, signed by your primary Parkinson’s care provider, to emphasize the importance of getting your Parkinson’s medications.  

These tools and more can all be found in the Parkinson’s Foundation Hospital Safety Guide, designed to help you prepare for and navigate a hospital stay.   

Order or download a free copy of the Hospital Safety Guide now.