Psychosis and Parkinson’s: Season 2, Episode 2

– Hi and welcome to ParkinsonTV, an educational series that
brings you diverse perspectives of Parkinson disease and
its many possible symptoms. Season one focused on the basics of living with Parkinson’s. In season two, we’re
exploring an important topic that’s not discussed often
enough: mental health. In our first episode of season two, we talked about depression and anxiety. In our second episode,
we’ll discuss psychosis, a less common but potentially very severe symptom of Parkinson’s. (music) Joining us today is series
creator and neurologist Dr. Bas Bloem from the Netherlands. Thank you for being here today. – It’s a pleasure. Thank you for inviting me. – We’re also delighted
to introduce our guests Dr. Allison Willis and Carol Vizzini. Allison is an Assistant
Professor of Neurology and Epidemiology at the
Perelman School of Medicine at the University of
Pennsylvania in Philadelphia. Allison, we’re so glad to have you here. – I’m glad to be here as well. Thank you. – Carol has Parkinson’s and she’s experienced forms of psychosis in addition to anxiety. Carol, we are looking so forward to hearing your story today. – Thank you, I’m glad to be here and talk about it. – Bas, let’s start with the big picture. There is so many things going on today with Parkinson’s. What specifically can we talk about when it comes to psychosis? Do we know a cause? – Well first of all, what are we talking about? I always separate psychosis
from hallucinations. Hallucinations is typically seeing things,
sometimes hearing things that other people don’t see or hear where the patient
thinks they’re real but there is at least some
form of insight retained. In psychosis, things
get a little bit worse and the insight is gone. And you can imagine how
this can be very scary. Sometimes, the psychosis can bring back memories from the past in a very lively fashion and it can be very scary for patients. If you think about the cause, there’s a number of things
you need to think about. One is the disease itself. We increasingly realize that hallucination or psychosis is a sign of more advanced long standing disease. Medication can definitely play a role. Dopaminergic medication
can make things worse. And some pills are worse than others and we
can talk about that later. And thirdly, whenever a patient develops
hallucinations or psychosis, I always check out the
general medical condition because a bladder infection, just a simple thing can trigger a cascade of events that also manifests itself as psychosis. – Carol, can you tell us
what you have experienced? – I’ve experienced two… Well, I guess I’ve had three experiences. But, the first one I didn’t even recognize it as anything. – You told me when we spoke that you saw things? – Yes, but they were things that were there in the living room. I have a rug that’s pretty densely populated with flowers. And these creatures on the, on the pillows changed from being beautiful and normal into something that was a
little bit more malevolent. – Allison, is this common? I mean, obviously, people wouldn’t think that they would have
something like psychosis. – People with Parkinson disease are especially vulnerable to psychosis. So just as Bas mentioned, you can have psychosis as a manifestation of later disease or commonly, you can have psychosis as a symptom, sometimes your only symptom of an infection, of an imbalance in your blood chemistries, it can be a symptom of another medical condition. And when we would think about psychosis for Parkinson disease patients, we always first think about whether there’s an underlying factor that’s precipitating it especially if the person
doesn’t have advanced disease. – The patients that you see, what do you see most often? Is there a common thread with the type of psychosis? – In general, people that we identify
as having psychosis have hallucinations, they see things that aren’t there, or things that they see appear different, as you mentioned, your beautiful flowered carpeting looked different. They may hear noises that aren’t, that no one else can hear or hear people whispering to them. Sometimes, people can have thoughts that are frightening, such as paranoia, or thinking someone is
coming in their house, or someone is trying to hurt them. All of those symptoms can fall under psychosis for Parkinson
disease patients. – And what should people do if they’re experiencing these symptoms? – Well, if you say, what should people do? It’s families because the insight is not always retained and it’s scary and it’s maybe not always something
patients always report. So the spouse and other
family members should be very alert to this and report it to the physician. Because as Allison said, you know, you want to search for an
underlying treatable condition. And if there is an infection, if there is an imbalance
in your blood chemistry, often times, that can be treated. Sometimes you need to tweak the medication or start new medications to
suppress the psychosis. So, it’s a treatable condition. I’m not saying it’s always treatable and I’m not saying it’s easy, but certainly, there are things
that can and should be done. – Carol, what was done in your case? Did you talk about it? Did you ask for help? – I talked to my neurologist and also to a psychiatrist who works closely with that neurologist. And I don’t think they saw anything particularly worrisome. – [Patrice] So you didn’t have to… – It’s something that we could keep an eye on. – [Patrice] Get a
treatment or anything? In addition, Allison, to what Bas said, what other things work for treatment? If you can identify, you know, if it isn’t a medical, you know, an infection
or something like that? – I ask myself, “Does this patient have the
right support system right now “to get them through the
assessment and evaluation process “for psychosis?” As Bas mentioned, it can be frightening to experience psychotic symptoms. And a patient may be afraid to share with their doctor, with their family member that they are seeing things that are frightening or seem out of the ordinary. Then, as Bas mentioned and I mentioned, we look for reversible causes. We look for reversible causes using blood tests, or x-rays if indicated. We always review medications. There are many medications
that can trigger psychosis. If we don’t find a reversible cause, there are several medications
that are available that can treat the symptoms of psychosis. And we generally will discuss with the patient the risks and benefits of
using one of those medications and then decide together on a course of treatment. – We also had a chance recently to speak with Robert Sanders, he also has Parkinson’s. We talked to him about his experiences and what he does to
cope with his psychosis. Let’s take a look. (music) – [Patrice] Daily walks with his dog Blue help Robert Sanders clear his head. – The fresh air helps. It does, it really does. I like to be outside and I can’t wait for the weather to get better so I can be outside
more and sit on my deck. – [Patrice] Robert was
diagnosed with Parkinson’s five years ago after noticing a tremor in his arm. His symptoms are both physical and mental. – So I think most people don’t really know exactly what Parkinson’s is and how it affects people. It’s a lot deeper than just like having a tremor. – [Patrice] He also
suffers from psychosis. – I have had some strange hallucinations, I guess
you would call them. There’s a man that lives
in my mirror in my bedroom. I see him every once in a while, he’s kind of creepy. – [Patrice] Robert says at night, he sometimes sees aliens in his backyard. – There’s these little creatures
running around at night in my backyard and they were just kind of nondescript, I can’t
really describe them to you but they were aliens. Well I took the dog out, I was standing on the
deck and I could see them running around in the bushes out there. It was late at night. – [Patrice] He says these delusions usually happen at night when he’s tired. – I don’t really know, it comes and goes. Though I haven’t had an
episode for quite a while now. But it could happen at any time. So I don’t really know what causes it and I don’t know what controls it. – [Patrice] This psychosis
doesn’t scare Robert because he knows it isn’t real. New medicines are helping
him sleep better at night and that means fewer psychotic episodes. – I would just say you have to keep your mind open and realize that it’s not reality. That it’s not really gonna affect you, I mean, not gonna hurt you at all, it’s just there. And sometimes you see things that you know, you don’t wanna see but you can’t help it. (music) – So let’s talk about Robert’s experience. In what ways are his symptoms typical of someone with Parkinson’s
and psychosis, Allison? – Robert’s experiences of seeing someone who wasn’t there, thinking that someone
was trying to hurt him, seeing things in the mirror, those are typical for visual
hallucinations and paranoia that we can see with patients who have
Parkinson’s and psychosis. You can also have changes in behavior, agitation, and fearfulness, which
usually results from internal paranoia that the person isn’t able to express. – How would you treat somebody like Rob? I know you haven’t met him but seeing that his symptoms
are at a certain level. – If we’ve identified reversible causes, we address those. If we are unable to identify reversible causes and the person is experiencing
harmful, frightening hallucinations, like Robert, it would lead us to consider more strongly starting a medication for the psychosis as opposed to continuing to watch them or monitor. – And Carol, I know
that you haven’t had to get any treatment. – Right. – How do you work this out? I mean, how do you deal with this? – I think there are things that we all experience that maybe isn’t real, real like the fruit in the basket. – Can you talk to somebody about it? Is it something you can discuss with somebody else? Or you keep it to yourself? – So far, I’ve kept it to myself. But I think I have a lot of friends. (laughs) – Well, and I know you
have a great caregiver who’s also with you today and a good support system. That is so important. How does she help? You can talk to her
probably about anything. – Yes. I think she’s my best friend. It feels much better if something is shared with someone else. – So I think for caregivers, it’s important to know that one of the ways you can support your loved one through this experience is to ask. Don’t rely on them to share, they may feel uncomfortable sharing even when you are close. To ask about the things that
they’re seeing or thinking so you can have an understanding of whether hallucinations are worsening. And it may be time to consider a treatment. – Just a little bit more
about the treatment. Of course, we totally agree on the treatment. In the old days, it’s maybe important to emphasize, we tended to withdrawal
dopaminergic medication because we know that pushing the dopaminergic system hard is another way of inducing psychosis. We also know that the disease itself is largely responsible and if you reduce the medication, psychosis may get a little bit better but patients pay a price by more stiffness, more slowness, more motor problems. So that’s why in general, if you can reduce any medication that’s likely to be responsible and likely to have a very small effect on Parkinson’s. Like amantadine, is a drug that is likely
to induce or worsen the hallucinations, but not likely to have a huge effect on your Parkinson’s. You’d withdraw it but otherwise, mainstay treatments like levodopa, I tend to keep them intact and then resort to specific treatments to
suppress the psychosis. – I will add that it is rare that I find a patient who has psychosis who doesn’t have another medication for
another medical condition on their medication list that is capable of inducing psychosis or tipping someone over the edge if they’re close to psychosis. So you really have to think about all of your medications, not just your Parkinson
disease medications. – I was just gonna say, and
you’re referring to other things that you might be taking. – Correct. Allergy medications, bladder medications, cardiac medications, there
are many, many medications that can push someone over
the threshold for psychosis. – Carol, have you changed anything about your medications or talked to the doctor because of these or it hasn’t been enough to really make a change? – Well I’ve been on
some kind of medication for about three years, I think. Yeah, it’s gone through changes. You know, let’s tweak it here, let’s tweak it there. My doctors know all my
medications I’m taking. – And so important, isn’t it? – Yes. It’s extremely important. – And the other thing we’ve
talked about a little bit is exercise, staying busy. Do you find that helps you at all? – Yes, I think so. First of all, if you’re
keeping yourself strong, doing some maybe yoga is very good I think for maintaining good sense of balance. – Does it help you in terms of your level of activity and your… The way you feel, too? – Yes, I feel I think much happier because instead of going down, down, down, I’m coming up. – New in season two, we’re debuting a caregiver perspective segment. We interview people
from around the country who are caring for
someone with Parkinson’s. (music) For this episode, we’re joined remotely by Nancy Coning. Nancy, thanks for being here with us from Delaware. – Thank you for having me. – From your experience, what are the biggest challenges that those with Parkinson’s and psychosis as well as their caregivers
face on a daily basis? – Well the biggest thing that I noticed, of course, I can’t speak for my husband, but the things that I noticed was that his behavior was very erratic. He would be fine with eye to eye contact, left to his own devices,
he would get bored easily, he had cut down trees thinking that he was saving me from having the tree pruners come in. He was climbing ladders to repaint what painters had
already done on the house. He was arguing with neighbors who were not argumentative. He would get ideas in his head that he had to do certain things and there was no rationale for, nor could he explain why
he was doing the things other than, he felt like he had to. The end came for him being on the loose and being able to do things for himself when he decided he wanted a cheesesteak and went two states away to get it. He got two buses, then hopped a train, went to Philadelphia,
had his cheesesteak, and promptly forgot how to get home. He’s in a nursing home
now, needless to say, for his own safety and
for everyone else’s. – Does your loved one
have any of the symptoms that are unusual or especially noteworthy? – Well, I don’t know too much about what typical symptoms are, but at one point, when he
reached the nursing home, he’s in a veterans nursing
home and he is a vet, he’s a past officer, they had the Honor Guard. And when anyone passed away, Tom was the head of the Honor Guard. So, whether it was day or
night, he would get up. And then he started to
envision the angel of death on his closet door. That was always the precursor of somebody going to die. So that was the most unusual thing that we encountered. – Can you offer any thoughts and advice for our viewers about caring for someone with Parkinson’s and psychosis? And also share your hope for the future. – Well, my best advice is
to keep a sense of humor. Sit back and don’t get too agitated, and that’s hard to do. Find things to keep yourself occupied outside of the illness. Make sure that you maintain
contacts with friends, join support groups, I’ve
started support groups so that I would have people that were in the same boat, or I always look for people
that were farther down the line so that I could see what was coming ahead and be a little bit prepared
for what I might find down the road. And what I found was
the hardest for me was deciding that I needed to make the break. That he needed to be in a
nursing home for his own safety and that for my sanity, he needed to be there as well. – Ladies and gentlemen, Nancy Coning. Nancy, thank you so much for your time. – Thank you so much for having me, I appreciate being here. – Thinking about hope for the future, let’s have a look forward, Bas, what is the prognosis for people who suffer from psychosis? – Well first of all, it’s critical to get good treatment. We know that during a psychotic episode, patients may start to wander about. These events typically happen
in the evening or at night. People may sustain a fall
while they’re psychotic and even fracture a bone or have some other type of injury. So treatment is critical. In terms of general prognosis, it really depends on the underlying cause. If it’s a simple change in medication and Allison keeps hammering on reviewing medication,
reviewing medication… – It’s important. – It’s key. If it’s simply reducing the medication, taking away culprit drugs, then your prognosis is fine. If it’s an underlying infection or a metabolic disorder
and you can treat it, your prognosis is fine. We have to be fair and honest. If it’s the disease itself, we know that the psychosis
in that case is a sign of a more advanced disease. And people will notice that not
only the psychosis is there, it tends to coincide with more difficult gait and balance and it’s a time when Parkinson’s becomes a little bit more problematic. Having said that, it is treatable, and I’m not the type of
person to ever give up. So yes, it is a more complicated phase, but even then, there’s a
lot we can do to help people and their families. – And Allison, I know there
are some adverse treatments. Could you talk a little bit about that? – Some medications are riskier than others in treating psychosis and Parkinson’s because they can make the
symptoms of Parkinson’s worse. In general, neurologists and doctors familiar with treating
Parkinson disease patients avoid those medications. Where that can be problematic is if you find yourself
in an emergency situation or in the emergency room where you’re unable to give
a lot of health information and you could be exposed to an anti-psychotic that can
worsen your Parkinsonism. One classic medication that does this is called haloperidol and it is often given for psychosis in emergency
situations in the hospital and for Parkinson disease patients, it can make their Parkinson’s symptoms much worse in the short-term. As the medication wears off, you will have recovery, but it can make for a very
uncomfortable couple of days. – The other problem I see
is general undertreatment. So yes, you know, anti-psychotics can make
Parkinson’s symptoms sometimes worse, but the other side of the coin is that there is a large group of patients undertreated for their psychosis and I see lots of doctors too scared or just reducing dopaminergic medication instead of resorting to an anti-psychotic which can be effective so undertreatment is another issue. – Carol, I know you’re
hearing all about medications and what has helped you the most would you say of any of your treatments? – I think it was a better day for me when Rytary came around. And I think it’s important when you have, when you are in a group, let’s say, an exercise class, you know, talk about, I mean, you’re all there
because you have Parkinson’s and so, there’s your chance to talk. – What has been the hardest part for you throughout your experience? – Realizing that I was going to have to, or I thought I was going to have to give
up playing the cello. I’m a professional musician. – Do you still play? – Yeah, I was gonna say the same… Are you still playing? – I just made a decision about three weeks ago to start playing again. – Oh wow. Good for you.
– After a year. – So you’re feeling better then? – Yes, I think I am. – [Patrice] That’s great. – I’m a strong believer in the beneficial effects of music, dance, art, creativity, and I’m always amazed by what patients do and how they perform. So good for you for starting again. – For each episode, we ask our viewers beforehand what questions they have about this topic. “I have Parkinson’s and I suffer “from visual hallucinations. “Is it normal?” Bas. – No, it’s not normal. It’s a part of the disease, as we said. So for one reason we
don’t fully understand, visual hallucinations, seeing things, is more common than for example, hearing things or thinking things. One thing that we didn’t address yet is sometimes eye problems, poor eyesight can lead to what people think
is visual hallucinations, but it’s actually a problem in the eyes and not in the brain. So it’s always good to
have your eyes checked out when you have visual hallucinations. – “How important is it for people “to be willing to take part in research “and clinical trials?” I’m going to ask you, Carol. – Oh, absolutely. I mean, what would we do without that? I mean, this is how we learn. – Have you done this? – [Carol] Yes. – Tell us about that, it’s been very successful for you. – Yes, I learned about a about several techniques for depression and… – We want to get Parkinson’s off the planet and while we’re waiting for that, get better treatment. We need research for that. And we researchers and clinicians can only do it together
with patients like Carol. The only way to treat this disease is to do it together. Trials are critical and I know we are often times
asking a lot of our patients, but it’s critical. And for example, an
initiative like Fox Insight by the Michael J. Fox Foundation is a wonderful way for patients to try and find a trial that suits their own interests. It’s sort of a matchmaking place where trialists can find patients
and the other way around. – Great. “How far off is a cure?” You just talked about that. That’s gotta be one of the biggest questions you’re asked too. When are you gonna find a cure? I mean, are we looking at years? – Step number one is
better treatment today. And I think that’s within reach. It gets better already day by day. It needs to get better. Second one, is hopefully
maybe slowing down the progression of the disease. And there’s some interesting
work in that area. The next thing’s maybe
stopping the disease from progressing even further. And then, prevention, or a cure, I think is not within close reach. It may take 10, 20, 30 years. I don’t know. I don’t want to make any false promises. But I want to tell all the
people watching this program, Parkinson’s today is not the same as Parkinson’s 10 years ago. And I predict Parkinson’s
10 years from now will again be different. And it will be a better world. – Any final thoughts, Allison? – Well, I think it’s very important to communicate with your doctor, to be open about the
symptoms that you’re having, and to be encouraged that
Parkinson disease research of all types, including drug trials,
and clinical trials that help you understand how to
live better with Parkinson’s are all coming together to improve your day to day life. – And, Carol, your hope for the future. – Well my hope is that, that there’ll be better treatments while we’re looking for a cure. – Thank you. That wraps up this episode
of ParkinsonTV on psychosis. We want to thank our panelists, Bas, Allison, and Carol,
for sharing their knowledge and experience with all of our viewers. Thanks so much for joining us today. We also would love to thank Robert and Nancy for sharing their
stories and perspectives. To close, we’re going to hear an overview of the whole episode in 60 seconds from Bas in an all new Parkinson’s Minute. (clock ticking) – Another hugely important topic today on ParkinsonTV, psychosis
in Parkinson disease. And not the easiest one. Not the easiest one because it’s complex and it’s debilitating. We talked about the various presentations, we separated hallucinations, where some form of insight is retained from an outright psychosis where things are totally real for patients. We talked about that fact that it is always critical to review the medication and to remove culprit medication. This can be Parkinson’s medication, but often times, it can be other medication. We talked about the importance of doing a general work-up, looking for maybe a bladder infection, a metabolic disorder, any other blood chemistry disorders, which is treatable, and if that’s all not the case, then it could be the
Parkinson disease itself which we know can cause
hallucinations or psychosis. In that case, the reflex should probably not be to reduce the dopaminergic medication because it may worsen
the Parkinson symptoms but rather to resort to symptomatic treatments
to make things better. If it’s mild, if it’s hallucinations, could be a cholinesterase inhibitor, if it’s a more severe psychosis, then anti-psychotics can be a serious consideration. You always need to find the
right dose for the right person and the right symptom, and in doing so, even psychosis can be improved with the right management. (cello and piano music)


  1. My father was diagnosed with PD in December of 1999, after a recent hospitalization and now a three week stay in a SNF, he started having hallucinations about a week ago. They aren't scary to him. But he absolutely believes they are real and even told me he can tell I don't believe him. In early June, his neurologist gave him a cognitive test because I mentioned that I had been noticing a lot of confusion and off behaviors. So are his hallucinations/delusions different than those mentioned in the video in that his aren't bothersome or scary to him? Or are hallucinations and delusions are categorized the same?

  2. ive had P.D. since 2000, i'm 54 now—had DBS surgery 2 years ago—I'm on Amantadine, Ropinirole, previously Mirapex—as well as others, curious of anyone else's thoughts on these meds—my thoughts "they should be banned!!1

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