Surprised by Psychosis: Our Journey With Parkinson's Disease

I expected motor problems. I did not expect hallucinations and paranoia.

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I've been by Jay's side for more than 50 years. I smile as I look back at our wonderful marriage – we were just two young artists in love. Jay and I raised our daughter while I worked in graphic design and later became a marriage and family therapist. And when he could be pulled away from his painting easel, Jay taught art at several community colleges and curated art exhibitions.

Living in Southern California, we both also loved to explore the outdoors. In 2009, I thought it would be fun to surprise Jay with a kayak lesson for his birthday. That's when I started to notice that he just wasn't himself. His hands were shaking and he couldn't complete the lesson because his limbs were stiff. After this incident, he also told me that he had been having trouble concentrating at work – which ultimately led to his retiring earlier than we both expected.

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We decided to see Jay's doctor, which is where we heard the two words that have changed our lives forever: Parkinson's disease.

After several years of working with Jay's doctor to manage his symptoms, the progression of his disease took a rather alarming turn. First, Jay started having hallucinations, or seeing objects and people who aren't actually there, such as black cats, groups of people in the living room at night, and sometimes his brother, with whom he will carry on a conversation for an entire afternoon.

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He also sometimes has trouble recognizing me. After so many years of marriage, it broke my heart when he walked right up to me for the first time and asked, "Where's Diane?" Now, I try to find some humor in the situation and call him on my cell phone (even as I'm standing right in front of him) to let him know that I'll be back soon. This makes us both feel better.

Jay also experiences paranoid thoughts, or delusions. Once, I left for just an hour in the afternoon and when I returned, I discovered that Jay was in the hospital. Convinced he was late for a party, he had left the house, tripped down our concrete steps, and suffered deep abrasions.

Diane and Jay Sagen have been together for more than 50 years.

I've learned that hallucinations and delusions are hallmark symptoms of Parkinson's disease psychosis (PDP), a common non-motor aspect of the disease that more than half of all people with Parkinson's will experience. I was shocked. We only expected the disease to affect Jay's mobility.

And we are certainly not alone. In fact, Jay's neurologist told us that most patients and their caregivers don't even report symptoms of PDP to their doctors, possibly because it's embarrassing to confide that your partner is acting "crazy." There is a lot of stigma associated with seeing things that aren't there and believing things that aren't true. But I'm glad we took the leap of faith to talk to Jay's doctor because now we work together to manage the condition as best we can.

Unfortunately, there are no FDA-approved treatment options right now for PDP, though one may be on the horizon.

As you can imagine as a caregiver, PDP also takes its toll on me. Not only have I had to come to terms with the changed dynamic of our relationship, but I am also left worrying constantly. In order to look after Jay, I've dramatically reduced the time I spend maintaining my therapy practice and on activities I enjoy, such as gardening, yoga, and playing the cello.

While it's important, it is also hard to ask for help with PDP. My daughter visits as often as she can to help me care for Jay, and I try to attend local support groups to care of my own mental and emotional health. But most people just don't understand our day-to-day life. There is a lack of awareness about PDP and the burden it puts not only on the people living with the disease, but on the caregivers, as well. 

That's why I found the courage to share my story. I hope that by educating others about PDP, I can help people who are in the same situation realize they are not alone. I also look forward to the day when Jay and I can find better relief for this challenging condition.

For now, we are learning the new "art" of truly appreciating each moment and the importance of love to carry you through difficult times.  

For more information on caring for someone with advanced stage Parkinson's disease, visit the National Parkinson Foundation's CareMAP resource at caremap.parkinson.org.  

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