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Singing in the Rain — Caring for My Family Members with Parkinson’s Disease Psychosis

Parkinson’s disease is unfortunately a part of my life story. My father was diagnosed with Parkinson’s disease, and my mother had Alzheimer’s disease and then developed Parkinsonism. In 1985, I moved to Detroit with The Nashville Network with an opportunity to go to Nashville, my dream. Instead I made the decision to give up that dream and move back home to care for my parents for the next ten years.

My parents were both vibrant, active people who were limited not only by motor control challenges typical of Parkinson’s disease, but also because they each experienced hallucinations and delusions.

My father helped this country reach great heights as the production manager of the control panels on Mercury, Gemini, and Apollo, but my heart sank the day I walked into the kitchen and he introduced me to his co-worker. I looked to where he was pointing and all I saw was an empty chair.

I learned that hallucinations (often visual), in addition to false beliefs, known as delusions, are hallmark symptoms of Parkinson’s disease psychosis, a common non-motor aspect of Parkinson’s disease affecting more than half of people over the course of their disease. Surprised? So was I.

And now, I am helping to support my sister who was diagnosed with Parkinson’s disease in 2014. Where once my sister was full of life and quick witted, today her personality is overshadowed by seeing images that aren’t really there. Frequently, she will see a snake on her hand, men in the trees outside, babies upstairs, dogs at the door, or even barbershop quartets in walls.

As you can imagine, caring for someone who is seeing or believing something that is not real can be very emotionally draining. Last Christmas, it took a toll on us all when her hallucinations diverted her from spending time with the family. Given her progression, I knew it would probably be the last Christmas that she would be able to stay in her home without care as no treatment options were available. At the time, there was nothing I could do but what I know best — sing about it. I wrote and performed a song at the Light of Day, a non-profit to fight Parkinson’s disease.

Then, shortly thereafter, I was told about a clinical trial for a medication to specifically treat hallucinations and delusions associated with PD psychosis. Although my sister did not have access to this medication during the trial, I was given the opportunity to share my story as a caregiver with the U.S. Food and Drug Administration (FDA) expert panel that decides whether to approve the drug.

After thirty years of dealing with PD psychosis, and feeling helpless all that time, I felt empowered to be a force for change. I was overflowing with emotion that FINALLY someone understood my story and was listening.

Much to my delight, several weeks ago the first treatment for PD psychosis was approved by the FDA. I don’t know how the approved treatment will work for my sister yet, but it’s hope. It’s hope for all patients, but for me as a caregiver, that by hearing my story another family won’t suffer the loss and uncertainty that I have.

My advice to other families is to learn more about non-motor control symptoms and to talk to a doctor. Families might also visit the National Parkinson’s Foundation to watch a video on PD psychosis or The Michael J. Fox Foundation for Parkinson’s Research to watch a recent webinar. Reach out for support and know you’re not alone.

All Caregiver Stories here.