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The Parkinson’s Disease Refrain: Do You See What I See?

by Guest Blogger
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Mobile dating apps aren’t just for millennials. Ricky N., 78, met his future wife Glynda G., 71, online more than two years ago. His diagnosis of Parkinson’s disease never deterred her from their relationship, and themotor symptoms that are characteristic of Parkinson’s disease did not stop them from enjoying suburban Nashville or engaging in activities they enjoy.

Some of the Parkinson’s symptoms Ricky experienced were more visible than others. His vocal range changed, becoming deeper, but that did not prevent him from singing in choruses at the local community center and with his local Parkinson’s disease organization. In addition, in certain situations, he would develop a tremor in his right hand, arm, and leg. Thankfully, the Parkinson’s medications typically prescribed to target these motor symptoms helped control his symptoms for many years.

Experiencing Hallucinations and Delusions

With his motor symptoms under control, Ricky and Glynda were not prepared for the onset of non-motor symptoms that followed.Beginning a little more than a decade after his Parkinson’s diagnosis, Ricky started to experience illusions, perceiving objects differently from what they actually are. He would see things he believed were fleeting shadows against the curtain blinds and wonder if a person was about to enter the room, but no one ever did. Later, he would also begin to experience hallucinations, which is seeing, hearing, or experiencing things that others do not. Sometimes, he would feel the sensation of a mouse brushing against his legs while he was in bed. He would “know” it was there but could not see it.

To convince Ricky that the mouse wasn’t there, Glynda once left a piece of cheese at the edge of the bed. She hoped that when Ricky saw the cheese in the morning, he might realize the mouse was not real. Yet when he saw the cheese, he still remained fixated on the idea that it might be there, anyway. This experience of believing something that is not true is called a delusion, and it was challenging for Ricky and Glynda to understand why Ricky truly believed in the presence of a mouse that was not there.

Parkinson’s disease Psychosis

Even though most people know Parkinson’s disease as a movement disorder, around 50 percent of people with Parkinson’s may experience hallucinations and delusions over the course of their disease. These, along with other non-motor symptoms, can be more troublesome than motor symptoms, in terms of quality of life. Despite the onset of hallucinations and delusions associated with Parkinson’s, only 10-20 percent of those experiencing these non-motor symptoms proactively report them to their health care providers. According to a recent survey conducted by the Parkinson and Movement Disorder Alliance (PMDA), care partners are about two times more likely to report hallucinations and four times more likely to report delusions than people with Parkinson’s.

Managing the non-motor symptoms

Upon sharing Ricky’s symptoms with his neurologist, Ricky was prescribed NUPLAZID® (pimavanserin) in early 2018 for the treatment of hallucinations and delusions associated with Parkinson’s disease psychosis. After a few weeks, Ricky realized that he wasn’t feeling concerned about mice anymore. While he still sees shadows in the early evening hours, he knows they are not real and is not bothered by seeing something that is not there. Both Ricky and Glynda feel that NUPLAZID is “making a difference” and are happy with Ricky’s response to the medication. It’s important to remember that everyone responds to medications differently, so it may take some time for NUPLAZID to start working. Not everyone will respond to NUPLAZID.

Ricky is now more knowledgeable about his symptoms of Parkinson’s disease psychosis, and working with his doctor found a way to manage these non-motor symptoms and a treatment plan that is right for him. If you believe your loved one is experiencing hallucinations or delusions, talk to their neurologist and learn more at MoretoParkinsons.com.

Talk to your doctor to find out if NUPLAZID is right for you.

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