Psychosis Surprised Me: Parkinson's Disease Isn't Just About Movement

My father, Clyde Hill, 78, is a retired farmer and construction business owner who spent his life working on land improvement projects.

However, after being diagnosed with Parkinson’s disease, it was up to me to build a new way of life for my father.

Since my grandfather was also diagnosed with Parkinson’s disease, I knew what was coming when my father’s movements became very rigid and he would freeze up when walking. These were the same initial symptoms that my grandfather experienced when he was diagnosed with the disease.

As my father’s symptoms progressed, my family and I and sought out a neurologist who confirmed the diagnosis in 1992.

Two years ago, my brothers and I started to see a big change in our father’s demeanor. Often in the evening or sundown, he became convinced that the CIA and/or drug dealers were going to hurt him and were inside his house, causing him to become agitated, combative and paranoid. One time when I attempted to reassure him that there were no bad guys in the house and he was safe, he even asked if I was in on “their” plan to hurt him.

My father also frequently believed he was seeing and talking to his parents and sister, despite them having passed away years ago. Honestly, I wish I was surprised that my father was seeing things that weren’t there and believing things that weren’t true, but again, my father followed his father’s footsteps. I remember that my grandfather had visions, too.

Now I know there is a name for this experience. Hallucinations (mostly visual) and delusions (false beliefs) are hallmark symptoms of Parkinson’s disease psychosis (PDP), a common non-motor aspect of Parkinson’s disease affecting more than half of patients over the course of their disease.

Watching my own father struggle with this condition was heartbreaking, but also frustrating. None of us could convince him that what he perceived as real just wasn’t based on fact. Our family found that these non-motor symptoms were more challenging to deal with than the motor symptoms.

We wanted to do everything and anything to help our father better manage the symptoms of PDP. Upon explaining my father’s experiences, his neurologist suggested he try the first and only FDA-approved treatment indicated for the treatment of hallucinations and delusions associated with Parkinson’s disease.

About four weeks after he started taking the medicine, we noticed a dramatic change in our father. His hallucinations declined immensely, which made him more content and less agitated. Suddenly, we were communicating better. If he did have a hallucination, he was more ready to understand that it wasn’t real.

Speaking up about his symptoms and getting him treatment has really helped our entire family. Others might be reluctant to speak up about hallucinations or delusions. There’s still a lot of stigma around symptoms some might call “crazy,” but being open about our experience as a family is important. My father has Parkinson’s disease, and hallucinations and delusions are just a part of that disease.

Through my experience I’ve learned the importance of sharing information with your doctor to ensure your loved one is getting the treatment he or she needs. To learn more about the common signs of hallucinations and delusions your loved one may be experiencing, and find caregiving support visit the National Parkinson's Foundation's section on Thinking & Behavior Changes.