Disclaimer
**The following disclaimer is from my legal department:
All events or experiences described in this blog are solely based on Perky Parkie’s life adventures. And while some Parkies might have similar events, we are all snowflakes, and no individual can replicate her exact experiences. Besides, who would want to? She is a bit nutty.
Furthermore, although freakishly smart, Perky is unable to diagnose, treat, or predict the progression of any individual’s Parkinson’s disease. Also, I want to remind you that my blog is strictly for entertainment purposes.
I’m not a doctor, so you should probably follow up with someone a little more serious than me.
Let’s break it down:
After my experience with having delusions, I wondered if this was a Parkinson’s thing or something more. Are Parkies more likely to hallucinate? And what’s up with illusions vs delusions? Aren’t they all the same? Well, after my hospital stay, which I wrote about in the post “It is what it is”, I wanted to get to the bottom of it, so I started a deep dive into how these experiences impact those with Parkinson’s.
Illusions:
Everyone can see a visual illusion. This is not an individualized experience. An example of an illusion is waking up from a dream in which you were riding on the back of a Capybara. Fun Fact: Capybara is the world’s largest rodent, and they look like giant guinea pigs… abnormally adorable creatures. But when you wake up, turn on the lights, you see in the corner of the room what looks like a magical rodent ready for a trot around your house, it’s just the pile of laundry that you were too lazy to fold and put away the night before. Illusions are distorted perceptions of real objects. And yes, Parkies are more likely to get them as our condition worsens, issues can arise, such as blurred vision, dry eyes, spatial awareness, or double vision, which can make illusions more probable.
Hallucinations:
It is a false perception. A person sees, hears, feels, or perceives something that is not real. Just like my recent blog post, “It is what it is,” where I detail watching a man get killed. Now that was a serious hallucination, and we now know why that happened, but that wasn’t my first adventure with seeing things that weren’t real. I describe what happened one night when I was on medications from the class of drugs for Parkinson’s disease called dopamine agonists, which are known for their high rate of reported side effects such as compulsive or impulsive behavior, hypersexuality, hallucinations, delusions, or gambling.
An excerpt from a previous post, “My Hallucinations.”
It was a late Saturday evening when I awoke suddenly from a bad dream. I couldn’t recall what the nightmare was about, but unbeknownst to me, the horror was just about to begin. I open my eyes to a blurry silhouette of a small lady with long black hair, sitting on my legs, with her back to me. Think of the girl from “The Ring” … no joke. Now I could attribute this to just good ol’ Hallucinations, but I was terrified when I realized that I could feel the weight of the girl on my legs. Eekkkk!
I tried to move, but my legs were pinned by this very real girl who was just chilling there, probably contemplating stealing my soul…I’m just guessing. I tried to reach for the lamp on my nightstand, but I couldn’t move my body. So I did what any rational person would do in this situation… I screamed. My roommate came busting through my bedroom door and flicked on the light switch, which I now know your regular LED light bulb immediately destroys creepy girls trying to steal your soul. A little piece of valuable information for you to keep…you’re welcome. The next day, I discontinued the dopamine agonist… with my Neurologist’s direction, of course.
Delusions :
Delusions are a fixed conviction that something is real when it is not. One of my patients was sure that her husband was having an affair with Miss Lulu, his secretary at his office. This caused irreparable damage to their marriage. It didn’t help that she also had impulsive behaviors and was constantly trying to prove the suspected infidelity.
Paranoia is a delusion dominated by suspiciousness, fear, and concern about safety. This was also something I experienced when I thought the nursing staff at the hospital was planning something devious that would ultimately hurt my recovery. I heard whispers and comments about how they would bring me down.
When researching these disorders, I found out that people with Parkinson’s disease are at a higher risk of experiencing hallucinations, illusions, and delusions. It‘s thought that up to 20-40% of Parkies will experience visual hallucinations. This can be due to infections, such as a UTI. Medications, either due to adjustment of dosing, Sinemet, or side effects from various PD medications. So the takeaway? Not only has Parkinson’s impaired your movements, moods, bowel movements, sense of smell, vision, your handwriting, and even your voice, giving you tremors, gait, and balance issues. But now it wanted to mess with your reality?
Well played Parkinson’s. Well played.
My husband recently changed to a medication called Crexont. This has been giving him intense, compulsive behaviors for the last few weeks. His are strange though…he talks for hours and has no idea about social cues anymore. He will interrupt people and not realize he is being rude. We have spoken to his neuro who suggested to reduce toe dose of his new medication. My husband is hesitant because the new med makes him feel so good otherwise.
He has since changed to texting people for hours rather than talking. He senses people are upset with him when they are not, and does not believe me when I tell him they are not upset. We need to check in with his pharmacist again soon and I am hopeful he will reduce the dose as suggested and that this will help him. It is very scary to go through this with him, but I can’t imagine how he feels.
Hello Melissa, I haven’t heard of that side effect. But we’re still learning about these newer drugs. Hopefully they can lower his meds and still give him some help without side effects. Thanks for sharing your story. Wishing you and your husband the best.
As always Allison your writing is most compelling, entertaining and also newsworthy for us, i.e. by sharing what you have experienced we may benefit. To paraphrase Plato, he believed “We should learn from those on a road we have not yet trod, but by our respective destinies’ we will trod”. Advance information allows us to research, coordinate with our respective neurologists and prepare to potentially meet with those sibyllic illusory figures likely to evaporate in the sunlight. I think you did a great job handling those deceptive illusions and may we do as well if faced with similar challenges. Well done!
Hi Wayne,
Plato was a cool dude! Thanks for the comment!
Hi Alison, I had my first “event” several days ago, and I’m unsure what type it should be designated as. I woke up hearing two animals fighting somewhere near me, but I was unsure if it was inside or outside my second-floor bedroom. After awhile of looking throughout the housse I surmized it was my imagination that created the event. It was all audio, no visual event. Always, something new with PD.
Hi Karol,
What a way to wake up! That would be alarming.
Yes it’s not any fun as it progresses. You have been through so much you’re an inspiration to me
Keep fighting & keep your positive attitude & sense of humor.
Take care
Hi Ralph,
Thank you for the comment. Hope you are doing well!
Yikes, sounds like it would be good to get “Alexa” set up so you can control the lights or music with a verbal command? Watching “Walking Dead” before going to bed might be risky. 👀
Hi Allison. I know you’ve been in and out of commission lately. One of my clients asked me if you’re still teaching exercise classes for Parkies. Jay loved your class. He’s been gone since 2016 but i have good memories of your class at the Newport YMCA.
Diane Sagen
Hi Diane,
Oh, how I do miss seeing you and Jay! 2016? Time flies by, eh? Thanks for reaching out to say hello! It made my evening!
I also experienced hallucinations while on a dopamine agonist. But as soon as I stopped taking it with my doctors permission I stopped hallucinating this is very real stuff and you describe it so eloquently.
Hello Twylla,
Those Dopamine Agonists get you every time!
Thanks for the lesson Allison. As I think you know Sharon had a lot of hallucinations, none dangerous fortunately. Originally we believed they were being caused by amantadine, which her MDO took her off. She got some temporary relief, but they started up again. Often she knew what she was seeing wasn’t real. In fact, we joked about it sometimes. But it was a challenge learning to work with her when they happened.
Hello Jer-Bear,
I remember Sharon telling me about little bunnies biting her toes. I thought that was such a cute, but weird hallucination to have. But bunnies are supposed to be cuddly!
Yes, that was a good one. She would talk to Kim as if she was there. I asked her once how old Kim was, and she said “4”.
Oh wow! Such a trip.