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Jody Wade: Unexpected Progressions

Parkinson’s disease (PD) has been a part of my life for quite some time now. As a long-time in-home nurse, I regularly interact with patients and their families as they learn to manage life with PD. In 2007, Parkinson’s came to have a whole new meaning to me when my mother, Ruth Ketcham, was diagnosed.  

My mom’s initial symptoms were common for people with Parkinson’s: rigidity and slowness of movement. She managed these motor symptoms well, particularly in light of available medicines and assistive devices. She learned to use a walker with a laser beam, which helped her place her steps more carefully. She was able to keep up with family and friends, ensuring that her social life remained in place.  

However, about a year after diagnosis, her Parkinson’s progressed in a way that I never expected. She started to see things that weren’t there. At first, the things she saw seemed believable. When she told me she saw mice in the house, I called an exterminator for her. But he didn’t see any evidence of rodents. When she saw a person on the roof, she called 911, but nobody was there. Over time her visions would get more elaborate and frequent, and therefore, harder to rationalize as real. For example, she would tell me that every morning a group of people would come into her backyard and practice Tai Chi. I didn’t even know she knew what Tai Chi was!

It wasn’t until she started seeing things that weren’t there when I was in the room with her that I realized she was hallucinating. She also began experiencing delusions (false beliefs), like worrying excessively about her grandchildren’s safety while in her home even when they weren’t there.

Since the onset of these symptoms, I’ve learned that hallucinations (often visual) and delusions are the hallmark symptoms of Parkinson’s disease associated psychosis. Even as a nurse, I was not prepared for these symptoms. Now I’ve learned that this aspect of Parkinson’s affects more than half of people with PD over the course of the disease.

As a result of PD associated psychosis, I witnessed my mom’s quality of life decline. She was often mad and upset because she felt the visions invaded her privacy. She was living in fear, so my teenaged daughters and I took turns spending the night in her home to reassure her she was safe. We also spent the night to help her with her mobility, which is compromised by her PD. We worried that if she were to get up to confront a vision she might accidentally injure herself.

It was manageable to care for my mother’s motor symptoms, but the non-motor symptoms took a toll on our whole family. Being a caregiver for someone with PD psychosis gave me a different set of challenges and obstacles to overcome. At times I was both frustrated and stressed. I wasn’t always able to convince my mom that the visions were not real — especially when she thought she saw a deceased relative in her home. It was incredibly heartbreaking when she could not be convinced that her parents were not in the room with her.

As soon as I realized my mother was experiencing hallucinations and delusions, I spoke with her movement disorder specialist. He told us that her symptoms made her a good candidate to join a clinical trial for what is now the first and only FDA-approved treatment for PD psychosis, NUPLAZID (pimavanserin). My mom decided to participate in the clinical trial because she wanted to help herself and others who have been living with this under-reported aspect of Parkinson’s.

About a month after my mom began the trial, I noticed a change. She did not experience as many hallucinations, and when she did have a vision, she better understood that what she was seeing was not real. My daughters and I agree that since my mom started treatment, she’s been more engaged with us and enjoying her life.

I want to share my family’s experience in caring for my mom with Parkinson’s associated psychosis, because I want other families who might be dealing with similar symptoms to understand they are not alone. Fortunately, there is now a treatment available for those experiencing hallucinations and delusions as symptoms of PD associated psychosis.

For more information about the common signs of hallucinations and delusions your loved one may be experiencing click here.

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