My PD Story

Everyone has a moment that stays with them. For me, it was the moment I realized Parkinson's disease (PD) would change everything. It wasn't the day of my father's diagnosis, it was in a hospital room, watching the man I saw as a solid, unshakeable face experience a crisis that didn't have to happen.

I remember thinking, something is wrong. And right behind it: Am I seeing this as a nurse, or as his daughter?

My father was the kind of person who made things feel okay just by being in the room. He didn't need to say much. He was steady in a way I will always remember, in his favorite chair, with his music, his dog, and his grandchildren. Back then, those moments felt ordinary. Now they feel like everything.

Parkinson's crept in slowly. A tremor here, slower movements there. It was hard to take in at first but eventually became something he and my family accepted as a new normal. I didn't decide to become a caregiver. It just happened, gradually, until one day that's simply what I was.

Underneath it all was the fact that I'm also a nurse. That combination sounds like it should help, and sometimes it did. However, it was also its own burden, because I couldn't turn that part of my brain off. I was always watching, always noticing things others might not have. And then I would go back to just being his daughter.

There were so many times I second-guessed myself. Am I overreacting? Am I being ‘that’ family member? I know that person. I've been on the other side of that interaction. I didn't want to be her.

During my father's hospitalization, his medication schedule slipped: doses were delayed or missed entirely. I watched, torn between knowing what to say and fearing I would undermine an already stretched team I respected, or the system I was part of because of my career.

Medication timing in Parkinson's is not a suggestion. It is the difference between stability and a crisis. The medications work because they are taken on schedule. Because of those missed and delayed doses, my father developed Neuroleptic Malignant Syndrome, known as NMS.

It's a rare but potentially fatal neurological emergency that occurs in Parkinson’s patients when their medications are abruptly reduced or stopped. When the brain is suddenly deprived of dopamine, it triggers a response that is frightening to witness: spiking fever, severe muscle rigidity, rapid and unstable heart rate, dangerously fluctuating blood pressure, and a level of confusion that can escalate into something far worse. It can look like a stroke, a seizure, a dozen other things that can be deadly if not recognized and treated right away.

NMS is preventable, and it doesn't have to happen at all. The single most important factor is painfully simple: give the medications on time. Every dose. Everyday. No exceptions.

After that, I was searching for answers one night, and what I found stopped me cold. I found the Parkinson's Foundation website and their hospital care initiative.

It laid out everything: the critical importance of on-time medication administration, the dangers of hospital routines overriding a patient's established schedule, and the ways well-meaning providers cause harm by not knowing what they don't know. It was my father's experience written out in clinical language.

What happened to him wasn't a fluke, but a system-wide gap in healthcare, and it was happening to other families. That realization didn't make me angry, but it gave me a direction.

I became a Parkinson's Foundation Ambassador for the New Jersey Pennsylvania chapter, talking to patients and their families about how to advocate for themselves. I joined the Foundation's Continuing Education Advisory Board to help shape education opportunities for professionals working with people with PD.

I completed my Bachelor of Science in Nursing capstone on medication safety in the inpatient setting and learned that delayed doses aren't just a minor inconvenience; they can have major implications for patients' lives. That project fueled my desire to further my education, and I will be starting my Master of Science in Nursing in nursing education this summer because if providers and nurses don't know enough, someone needs to teach them.

Beyond that, I have a vision for standardized protocols for Parkinson's patients built directly into hospital Electronic Medical Records, so the guidance doesn't live only in a training module someone completed once and half-remembers. It surfaces at the moment of care, prompting the right questions and actions for every nurse to take with every patient with Parkinson's who comes in.

My father passed away in November 2024. There's a particular quiet that comes after caregiving ends, when all of the routines and rhythms just stop. But that time gave me something I will spend the rest of my career honoring: in every patient I care for, every nurse I teach, every family I sit with and say, "Here's what you need to know: Speak up. Ask questions. You know your person better than anyone else."

Being both the nurse and the daughter was never a weakness. It was what gave me the strength to fight for him and continue fighting for others like him.

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