Dan Keller 00:08
Welcome to this episode of Substantial Matters: Life and Science of Parkinson's. I'm your host, Dan Keller at the Parkinson's Foundation. We want all people with Parkinson's and their families to get the care and support they need. Better care starts with better research and leads to better lives.
In this podcast series, we highlight the fruits of that research, the treatments and techniques that can help you live a better life now, as well as research that can bring a better tomorrow.
Our last episode with Dr. Joe Quinn of the Oregon Health and Science University, a Parkinson's Foundation Center of Excellence, focused on hallucinations and how to treat them. Today, we continue the discussion of sensory misperceptions in Parkinson's disease.
Hallucinations, illusions, and delusions can all occur in people with PD, especially in the advanced stages of the disease. They can interfere with your everyday activities, and they might be scary, but they are treatable with coping strategies and medication adjustments, so it's important to talk about them. If you experience them, there is even a new medication on the market that may help.
Dr. Martha Nance is the director of the Parkinson's Foundation Center of Excellence at the Struthers Parkinson's Center in Minneapolis. She identifies four questions for you and your healthcare team to think about when figuring out the best way to manage hallucinations. And she says, while hallucinations may affect any of the senses, most often they are visual.
Dr. Martha Nance 01:53
So people will see things that aren't really there. Often it's people or animals. People with Parkinson's can also have things that are sort of a variation on the theme of hallucinations, something that we might call an illusion.
The classical illusion would be a mailbox that looks a little bit like a short person. And a more disturbing kind of false experience that a person with Parkinson's can have is a delusion, sort of a false belief, the sense that somebody's spying on them, or that there's infidelity on the part of a spouse.
Dan Keller 02:27
So the main ones are visual, but they can also have auditory paresthesias. Those also?
Dr. Martha Nance 02:33
Yeah. So as I said, commonly, interestingly, it's visual symptoms, but some patients will have a feeling of things crawling on the skin.
I had one patient who had a funny taste in their mouth that would come on at certain times of the day, and she was also convinced that somebody was trying to poison her because of this funny taste that she would have. So it was accompanied by this sort of paranoid or suspicious thought.
Dan Keller 02:57
Possibly for good reason if you're having a taste that you didn't induce. Are the hallucinations mainly from the drugs to treat Parkinson's, or does the disease itself involve them?
Dr. Martha Nance 03:09
It can really be a combination of both. What's interesting is that most people with Parkinson's don't develop hallucinations until a number of years into their course—10 years, 12 years, or even more.
If hallucinations begin right at the beginning of the disease course, right at the onset of the motor symptoms, we actually use a different name for that. We call that Lewy body disease.
So in people with more typical Parkinson's disease, hallucinations develop later on, probably partly due to the total brain injury or the effects of Parkinson's disease on the parts of the brain that create these images or create our perceptions.
But all Parkinson's pills—all of the pills that we use to treat the motor symptoms—will tend to promote hallucinations, so it's often a combination of both.
Dan Keller 04:03
Is it worthwhile trying to separate out the origin, or it doesn't matter whether it's the disease or the drugs? At least the drugs you might be able to modify, I would think.
Dr. Martha Nance 04:12
Sure. So the obvious question: how do you treat a hallucination?
The first thing that the neurologist would think of is to cut back on any unneeded medications that might be contributing to the problem. Of all of our Parkinson's pills, levodopa is probably the most effective at treating the motor symptoms and may be somewhat less likely to trigger hallucinations, whereas some of the other drugs, such as amantadine or the MAO inhibitors like selegiline or rasagiline, or the dopamine agonists, are somewhat more likely to promote hallucinations.
So sometimes the best treatment for a hallucination is to cut back on some of the Parkinson's medicine.
Dan Keller 04:56
Do people tolerate that well? Do they then have more motor symptoms?
Dr. Martha Nance 05:00
Yes, it depends on the patient, and I often talk about prioritizing the symptoms.
I think most people, if they had to make a choice between moving a little bit less well but having a clearer understanding of the world around them versus being able to move a little bit better but seeing strange people in the room, would rather be more clear-headed and put up with a little bit worse movement.
Plus, sometimes people are on medications that they've been on for 10 or 15 years, and as the disease progresses, they then add other medications on top of that. It may be that the other medication that was added is doing 98% of the work, and that medication you started 15 years ago, you don't even notice if it's not there anymore.
So sometimes you really can get away with taking away or at least reducing the dose of one or another of the Parkinson's meds.
Dan Keller 05:56
Besides changing medications or doses, are there coping mechanisms? Can people deal with them even if they're having hallucinations?
Dr. Martha Nance 06:04
Sure, as with every other aspect of Parkinson's disease, the details are critical, and I think there are four questions in particular to sort of ask or think about as you're understanding hallucinations.
One is whether the hallucinations are occurring at a certain time of day, or is it all day long? Well, we all hallucinate at night—we just call it dreams—and so I leave a little more latitude for people to have funny experiences during the night. Sometimes people will have a pattern where the hallucinations escalate in the evening, and other people will have hallucinations all day long; that might make a difference in how you treat it.
Are the things that you're experiencing close by here in this room—the strange man standing in the corner—or is it some kids outside across the street with balloons that other people don't think are there? Things that are here in the room are inherently more threatening than something across the street.
Number three is, are the things nice things, or are they scary things? I sometimes keep a little puppy dog in my office—you can't see him, but I kind of like having him there. He keeps me company. He's my pretend friend, and I like him. But six men with knives standing in the corner, and one of them under the bed—that’s when I’m calling the police.
And the fourth thing is whether the person experiencing these things knows that they’re not real. Insight makes a big difference.
Dan Keller 08:09
So what do you advise patients or their care partners to do about this?
Dr. Martha Nance 08:14
Absolutely, the number one thing is to talk about it. Patients and their caregivers are often afraid to mention it to the doctor because they’re afraid the doctor is going to think they’re crazy, but this can be part of the disease or the treatment—and it’s treatable.
If reducing medications doesn’t help, or reassurance doesn’t help, there are medications that we use to treat hallucinations. These are typically antipsychotic or neuroleptic medications.
Most of them work by blocking dopamine, which can worsen Parkinson’s motor symptoms. So we’ve always had to balance treating hallucinations without worsening movement.
A newer drug, approved in 2016, works differently—it targets serotonin instead of dopamine. That drug is pimavanserin, specifically developed for Parkinson’s-related hallucinations.
Dan Keller 10:05
Do you have experience with it? How well does it work in the real world?
Dr. Martha Nance 10:07
I have a very small experience with the drug because it’s fairly new, and like all drugs, it’s not perfect. It can have side effects.
It may take time to work, and symptoms may not go away completely, but they may become less severe or less threatening.
Dan Keller 10:53
Any final words or advice?
Dr. Martha Nance 10:55
It’s very important for people to feel comfortable talking about this with their doctor. It is a treatable problem, and addressing it can really improve quality of life.
Dan Keller 11:18
Sure. Very good. Thank you.
Dan Keller 11:29
Hallucinations are a hot topic these days, and the Parkinson’s Foundation has many free resources to help you learn more.
If you didn’t listen to our previous episode yet, start there at parkinson.org/podcast. The episode is called Do You See What I See?
You can also read our book Psychosis at parkinson.org/books or call our helpline at 1-800-4PD-INFO.
Our PD information specialists can guide you to resources, webinars, and care providers experienced in managing hallucinations.
For questions or feedback, visit parkinson.org/feedback.
Our mission is to help every person with Parkinson’s live the best possible life. New episodes are released every other week.
For more information, visit parkinson.org or call 1-800-473-4063.
Thank you for listening.
