My PD Story

My name is Julie, and I was diagnosed with young-onset Parkinson’s disease (YOPD) in 2018 at the age of 44. Since my diagnosis, my most prominent symptoms have been rigidity, slowness of movement, and foot dystonia.  

Part of my PD journey involves a scary hospital experience in 2023. While my daughter and I were on a cross-country road trip together I began experiencing severe dyskinesia (involuntary, erratic, writhing movements of the face, arms, legs or trunk) and cramping. This is fairly common for me, and sometimes, when this happens, I use THC (medical marijuana) to find relief.  

However, when I did this time, I became unresponsive, which had never happened before. My daughter pulled over to call 911 and an ambulance transported me to the hospital. 

The next thing I knew, I woke up in the ER. I thought I was having a bad dream. My daughter explained to the medical team that I have Parkinson’s, and like many others, use THC to help manage my symptoms.  

The ER team was convinced I was a drug addict and treated me like I had done something wrong. My daughter and I were both shocked and scared. They didn’t believe I had Parkinson’s, and they refused to perform any tests or allow me to take my Parkinson’s medications. 

Unfortunately, it took several hours to convince the medical team that my Parkinson’s medications were essential. Once they realized these weren’t street drugs, my medications were administered, and my symptoms became under control.  

The doctor neglected to contact my neurologist, and further testing was never done. I was treated carelessly and discharged the same day. When I talked with my neurologist after the hospitalization, he said that I experienced a “dystonic storm.”  

Since then, I have taken time to process this traumatic experience and learned how to advocate for myself as a person with Parkinson’s. Most recently, I underwent deep brain stimulation (DBS) surgery that changed my life — and greatly improved my symptoms.  

While we don’t always know when we are headed for a hospital stay or ER visit, there are ways to prepare. The Parkinson’s Foundation Hospital Safety Guide can help you and your loved ones prepare before your next planned or unplanned hospital visit so that you feel prepared to navigate the hospital with confidence. 

Advocate for your best care with the Hospital Safety Guide. Learn more and download the guide now.