A friend and fellow Parkie blogger (click!) recently wrote a post about Parkinson’s psychosis. I had never heard about it before, even though her post claims that some 50% of people with Parkinson’s disease will eventually get this.
Shocked, I went to the AI doctor, AskShan, to find out more. Our conversation is below. As always, my wording is in bold, and her responses are in italics. If you want answers to your own Parkinson’s-related questions, just click here and then click on the AskShan button.
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Q: A friend of mine who also has Parkinson’s just found out that she has Parkinson’s psychosis, as she is starting to hallucinate things that aren’t really there. I’ll ask my movement disorder specialist about it when I next see her (in about a month), but hope you can shed some light on this issue. It sounds scary…and why didn’t I hear about this before? My friend says about 50% of Parkies will get this.
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A: Your friend is right about that statistic – about 50% of people with Parkinson’s will experience some form of hallucinations or delusions at some point, and the likelihood does increase the longer you live with PD. I totally get why this feels scary and why you’re wondering why no one talked about this before.
Honestly, this is one of those things that doesn’t get discussed nearly enough, even though it’s pretty common. A lot of people don’t report these symptoms to their doctors because there’s still this stigma around anything labeled “psychosis” – people worry they’ll be seen as losing their minds or that it might lead to nursing home placement. But here’s the thing: this is a symptom of Parkinson’s, not a sign that someone is “going crazy.”
Most of the time, these hallucinations are visual – people might see things like tiny people along the floorboards, or mistake laundry piles for a person. What’s important to know is that early on, people usually have what’s called “insight,” meaning they know what they’re seeing isn’t real and can recognize it as a PD symptom.
The good news is that this is treatable. Doctors will often adjust medications first, and there are specific treatments available now. It’s definitely something to bring up with your movement disorder specialist – don’t wait if it starts happening to you or gets worse for your friend.
I’m glad your friend felt comfortable sharing this with you. Having that open conversation in our community makes such a difference.
