My PD Story

My name is Karen, I am 58 years old, and I was diagnosed Parkinson’s disease (PD) in 2019, right before the global Covid-19 pandemic. At the point of my diagnosis, I was experiencing advanced symptoms that were previously masked by a busy life of motherhood and exercise. I attributed many of my symptoms, such as back stiffness and shaking, to overtraining, excessive caffeine and stress. I never thought an active person like me might develop Parkinson’s. 

Upon my diagnosis, I connected with a wonderful neurologist who determined that my Parkinson’s was caused by genetics. Unfortunately, over the course of several months, I began to experience severe symptoms of dystonia (repetitive muscle twisting, spasm or cramp), falling and stiffness on the left side of my body. My Parkinson’s medications help, but to this day, I still experience severe symptoms, which can be troubling to my loved ones as my medication wears off.  

As a result of Parkinson’s disease, I have found myself in many Emergency Room (ER) situations. I am a “clock watcher” when it comes to taking my medications on time, meaning that I take them frequently, every day, at the same exact time. Dystonia and stiffness hit me with a deep and painful heaviness, which is why I must stick to a strict medication schedule.  

Last fall, my neurologist believed I was a good candidate for a new extended-release Parkinson’s medication to alleviate my worst symptoms, which I eagerly agreed to try. After taking it for the first time, I quickly realized something was not right — my throat began to close due to severe dystonia, and my speech became increasingly slurred.  

I called my neighbor for help, and they quickly called an ambulance to transport me to the ER. I brought all my old Parkinson’s medications and everything else I might need for a hospital stay. I was having a bad reaction to the new medication.  

Unfortunately, things became a fiasco when the ER did not give me my medication on time. I was admitted to the hospital for observation overnight due to low blood pressure, and the medical team refused to give me my Parkinson’s medications.  

Between the ER and Admitting, hospital error of staff and pharmacy miscommunicated my list of medications in their computer system. I had clearly provided them a list of my medications and the schedule, yet they did not enter them into their computer system correctly. The inpatient nurse locked my medications from home in a drawer. It took me multiple attempts and worsening symptoms to convince the medical team to administer my medications.  

Many medication doses were missed and then given delayed 12 hours. When I finally left the hospital, my symptoms were significantly worse than before my hospital stay. Months later, I am still recovering.  

I share my story not to frighten anyone, but to encourage people with Parkinson’s and their loved ones to advocate for themselves while in the hospital. Medical teams are not always educated on the PD or Parkinson’s medications timing and care, and this can be a scary reality when you are alone.  

Lack of awareness in the hospital setting exists for how Parkinson’s presents itself in younger people. My story is an example of not judging a book by its cover. The Parkinson’s Foundation Hospital Safety Guide is designed to equip you for your next hospital stay. 

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