Behavioral Health Challenges Facing Patients with Parkinson’s Disease

Podcast Transcript

Introduction: Neuro Pathways, a Cleveland Clinic podcast exploring the latest research discoveries and clinical advances in the fields of neurology, neurosurgery, neuro rehab, and psychiatry.

Glen Stevens, DO, PhD:

Chemical changes to the brain as a result of disease progression and medication interaction presents significant behavioral health challenges for patients with Parkinson's disease. In today's episode, we're discussing these challenges and how they're best managed in an interdisciplinary setting. I'm your host, Glen Stevens, neurologist/neurooncologist in Cleveland Clinic's Neurological Institute. I'm very pleased to once again be joined by Taylor Rush. Dr. Rush is a Clinical Health Psychologist and Director of Behavioral Services and Interdisciplinary Programs in the Cleveland Clinic Center for Neurological Restoration. Taylor, welcome to Neuro Pathways.

Taylor Rush, PhD:

Thank you for having me, Glen.

Glen Stevens, DO, PhD:

So Taylor, why don't you tell us a little bit about your background and how you found your way to CCF?

Taylor Rush, PhD:

Sure. So my background is in clinical health psychology. I received my PhD from East Carolina University 10 years ago, and I ventured up to Cleveland for my fellowship, which I did in our headache center actually. And I loved Cleveland, I loved the clinic. I loved that there is such a priority on interdisciplinary care that I chose to stay and have been here ever since. And at the time, while there was certainly some need in our headache center, we also had an incredible need for behavioral health services within our movement disorder section. So I was asked to be part of an initiative to start more regular and consistent behavioral health services within that section. And so, after learning about movement disorders and Parkinson's disease, Huntington's disease, essential tremor and some of the things that these individuals can go through, it seemed like such a perfect fit. So I've been there ever since. So it's been eight years now since I've been working with movement disorders.

Glen Stevens, DO, PhD:

Well, great. They're fortunate to have you.

Taylor Rush, PhD:

Thank you.

Glen Stevens, DO, PhD:

So it's an unfortunate reality that many of the patients we treat in the Neurologic Institute experience behavioral health challenges along with the physical manifestations of their diseases. For this conversation, we're going to focus on patients with Parkinson's disease. But I wondered if first we could take a step back and broad brush talk about the challenges that face patients with movement disorders. Are there commonalities or differences among them?

Taylor Rush, PhD:

Absolutely. So a commonality that tends to run between different movement disorders is that they do tend to be neurodegenerative and progressive. So for many of our patients, whether it's Huntington's disease or Parkinson's or essential tremor or dystonia, a lot of times symptoms may start out mild and as the years go on, become more intense, more advanced, and more disabling. And so, for many of our patients, it's a moving target in terms of learning how to cope. So there are some definite similarities in that way. But within each different type of movement disorder, there are definite differences in terms of the types of symptoms that they may experience as well as some of the mental health symptoms that they may be more prone to experience as well.

And some of that depends on how quickly their disease progresses. So with someone who has Parkinson's disease versus someone who has multiple system atrophy, some of their symptoms may progress much faster with m MSA. And therefore, adjustment in coping needs to look very different. And some involve a great deal of pain like dystonia where others involve a lot of inconvenience and social embarrassment like essential tremor. So what ends up being difficult and disabling for people can vary depending on the symptoms and how they progress.

Glen Stevens, DO, PhD:

And not only is the disease itself a problem, but of course, some of the treatments that we give are medications that we use can also cause problems. Dopamine agonist, obviously a very common drug used for treating patients with Parkinson's disease. What types of problems do you see with patients on dopamine agonists that you would help with?

Taylor Rush, PhD:

So a lot of times patients may get referred to me if their neurologist finds out that they may be developing an impulse control issue. So these are patients who they're placed on a dopamine agonist to help with some of their Parkinson's symptoms. But the combination of the dopamine agonist along with the advancing Parkinson's can create issues with executive functioning that then make them more likely to engage in risky behavior or behavior out of character. So for some people, it's as mild as I'm eating a whole lot more ice cream than I used to, which is I start and I can't stop. And for others, it's buying a lot more lottery scratch off tickets. And then for others, it may be experiencing hypersexuality or increased seeking of pornography. Or it can escalate to the point where people are gambling or spending money to the extent that they take out hundred thousands of dollars of lines of credit on their homes that no one knows about until it's already done.

So it can range wildly in terms of presentation, and this may occur in somewhere between 10 to 20% of our patients. And so, we really want to ask about that early after they're placed on dopamine agonists and keep asking to keep an eye on things. And so, I will get referrals to help with behavioral management, especially surrounding supporting the patient and their family and educating them on what impulse control disorders are and that it's not a conscious choice that they're making. And how do we set up their environment so that some of these things are not accessible or only accessible in limited quantities like money or certain foods or things like that.

And making sure that families understand that it's not something, again, that they're doing intentionally or that their personality has just wildly changed. It's that with having Parkinson's in addition to this medication, there just may be behaviors that we have to monitor and sometimes limit. And then in other cases we just have to eventually wean them off the dopamine agonist because the cost is too high. And so, I get to talk to the patient and the family but also be able to reiterate some of the concerns and monitor the symptoms with the neurologist.

Glen Stevens, DO, PhD:

Excellent. What about psychosis?

Taylor Rush, PhD:

So psychosis can be an incredibly scary event for patients. And again, it can range in terms of very mild, very benign symptoms. So they may see a dog or a cat even though they don't own a pet, or it can range into some really severe and distressing delusional behavior like people are breaking into my home or Capgras syndrome where my wife is not actually my wife, it's an impersonator. And so, we can see psychosis in up to 50% of our patients over the course of their Parkinson's disease journey. And so, that can be a scary number to people. And for a lot of people, they may experience some of these visual or auditory hallucinations or some of these delusional beliefs. But they don't actually disclose it to their provider. And so, in some research, they say only somewhere between 10 and 25% of people spontaneously disclose some of those symptoms, and others kind of keep them under wraps until they become more severe.

And so, we want to work in close coordination with the neurologist and usually one of our psychiatrists, and luckily we have one here that is a geriatric psychiatrist that works specifically with folks who have Parkinson's, so they know the population well. And we work together on medication management as well as are there other factors that may be contributing? Because sometimes people develop psychosis because they have a urinary tract infection or upper respiratory infection. Or sometimes their medication is titrated a bit too high and that can cause psychosis. So it's a combination of being able to educate them about the symptoms, make sure there aren't other factors that may be contributing to their exacerbation. And making sure family knows how they can support their loved one through the process.

Glen Stevens, DO, PhD:

So I'm just going to back the bus up a little bit here. So if we dive into the Parkinson's disease group, talk to me about the first time you see patients. I imagine you're involved very early on with these patients, but tell me, typically a new patient comes to see me if I'm one of the movement disorders physicians. At what point in the journey would you typically see the patient and what's the discussion? How does it move along?

Taylor Rush, PhD:

First points of contact can often be after someone is diagnosed with Parkinson's, they're still accepting this diagnosis and what it is because usually at this point, they still have fairly mild symptoms and those symptoms may have been around for a few years and they just kind of dismiss them as something quirky that's just going on with their body. But then things start to escalate and after they're diagnosed, they're still saying, "Gosh, this is Parkinson's. Oh, my goodness." And they think about not only what that means for them now, but what that might mean for them in the future. And for many of our patients, they're being diagnosed right around the time that they're possibly retiring or their kids are grown, this time of their life that they have preserved for themselves. This is when they're going to go on vacations, this is when they're actually going to relax.

This is when they're going to catch up on all the books they wanted to read for the past 20 years. And now, they're being diagnosed with this neurodegenerative disease that sounds very scary. And they don't know what the future may hold or how to make plans. And so, that can certainly instigate some feelings of anxiety, some feelings of helplessness, and they're not always sure how to communicate it to their loved ones. How do I talk about this? How do I tell them? But make sure that they don't treat me differently or tiptoe around me about it. And so, we end up having a lot of conversation about how to communicate it to others, how to discuss the diagnosis, how to live with some of the ambiguity of what the future may or may not hold and how to enjoy today for what it is.

Glen Stevens, DO, PhD:

And what's your journey with the patient? I mean, obviously, it'll be different for different patients, but what's your typical journey with the patient?

Taylor Rush, PhD:

So let's say if I see someone after they're initially diagnosed and we kind of work through some of those initial adjustment issues. It may be a few years before I would see someone again, they kind of learn to adjust and they continue on with their life. And I talk about psychology and behavioral health as a revolving door. You come, you see me, you get what you need, you go and live your life. And then something comes up and then you come back and see me and we figure it out and then you go live your life. And so, after a few years of their diagnosis, they may start to notice symptom escalation. So their tremor worsens, they're getting more rigidity, they're slower to get around. Their coordination isn't what it used to be, it's affecting their golf game, it's affecting their social life, it's affecting their ability to button their shirts.

So those things start to get under their skin and they may notice that it's starting to affect their quality of life. And often, it's at this point that we can see some increases in depression and anxiety symptoms, one in part because of functional limitations, but two, also because of how there is dopamine loss in the brain. And so, we can see higher rates of depression and anxiety in these individuals. And so, they may come back to learn how to manage that because for many, they're not necessarily familiar with depression or anxiety. They may never have had that before, and they may never have seen a psychologist or have been to see a psychiatrist before because it was never necessary. And so, we talk about how to manage anxiety and depression, how to adjust and pace activity differently, how to tackle sleep concerns if they're starting to develop insomnia or some develop rum behavior disorder where they kick and punch and sometimes yell or talk at night.

And so, working with psychiatry as well as neurology on ways to manage that medically and being able to learn how to maintain independence as much as possible by communicating with loved ones, what they want them to help with and maybe what they don't want them to help with, even if it takes them twice as long to do half as much. So we end up kind of tackling different areas of functioning, different areas of life that may get affected by Parkinson's and figuring out how to manage it as best as possible, even if life does need to look different than it used to.

Glen Stevens, DO, PhD:

Do you do shared medical appointments or no?

Taylor Rush, PhD:

I do. We don't have any currently for our Parkinson's patients, but it's something that we're working on because there are a lot of commonalities in terms of the different struggles that people experience. And I think that group visits can be an incredibly helpful part of their treatment because they get to actually see that other people deal with the same things that they are. And so, there's a sense of universality and a sense of connection that they may not get in their everyday life could be because they may not know others with Parkinson's. So it's definitely something I would like to see grow.

Glen Stevens, DO, PhD:

So a number of these patients as their disease progresses, may do something surgical. They may do deep brain stimulation. I know Dr. Nagel's doing a lot of high intensity focused ultrasounds specifically for the tremor patients. What's your role there?

Taylor Rush, PhD:

So anyone who comes through for a DBS or high frequency ultrasound evaluation is seen by one of the psychologists. So we have two, myself and one other Dr. Hasnie. And so, anyone that comes through has an appointment with us. And how I describe it to the patient is that we have you jump all these hoops because we're trying to get to know you better. So you're seen by surgery, you're seen by neurology, you get all these different tests. And you're seen by us because we want to make sure we have a well-rounded understanding of who you are as a person, because living with Parkinson's is not easy and it can wear on you. And we want to make sure that we can support you in every way we can through the journey. So I kind of preface it with that education. And then I ask about everyday life and how they're functioning and how their symptoms are getting in the way.

I ask about what supports they have in their life and what expectations they have related to surgery. What symptoms do they want to see get better, what would they like to be able to do if those symptoms were to improve and how they feel about the surgical process. Because as I tell my patients, if you're coming in contemplating brain surgery, this is obviously affecting you pretty profoundly. And the idea of brain surgery is not always a settling thought. And so, for some people, they do experience some significant anticipatory anxiety leading up to surgery. Or they may have a longstanding history of claustrophobia or possibly medical anxiety or trauma from past procedures, in which case we will often meet with them for a few sessions in preparation for surgery to discuss relaxation techniques, cognitive behavioral techniques, self soothing techniques to help them manage during the surgery as most patients are typically awake for about 20 to 30 minutes in the middle of the surgery when they're doing the lead implantation so that we can make sure we're exactly where we need to be.

And so, there are times where I will accompany a patient into surgery and I'll be there to kind of help talk them through the awake portion. So behavioral health can really be a very helpful and integrated member of the team for the surgical prep as well as during surgery and then as well as after, because it's a marathon for patients. It's not just we turn a switch on and DBS works magically. It's a process of trial and error with adjustments and making sure the programming is optimized. And so, for some people, it gets a little war and they get anxious or concerned about it not working or is it going to help as much as I hope? And so, we can be there to help support them through that process as well.

Glen Stevens, DO, PhD:

And let's talk a little bit about the caregiver. Your involvement with the caregiver, which is I'm sure needed.

Taylor Rush, PhD:

Yeah, that's a special area of interest of mine. So I think often, care partners are acknowledged as important members of the healthcare team, but we don't necessarily always acknowledge their needs in the process. And so, often, I may get referrals sometimes from our neurologist to talk to a care partner, not just the patient. And oftentimes, that happens when patients are starting to get into their stage of disease where they're becoming a bit more dependent, where their symptoms are a bit more profound. And for some, they may start to develop dementia. And so, it's at that point that the care partners are really starting to feel the weight of some of the responsibilities that they've are gladly carrying through because they love their family member. But at the same time, day to day, it's hard. And so, I will talk to family members about what that can look like to make sure that they're taking the time they need for themselves, making sure that they're utilizing supports that are available to them.

And we have two amazing social workers who help to ensure that people are connected to the right resources in their communities. Recently, one of our nurse practitioners and I, Ellen Walter, who's an amazing Parkinson's advocate, have started a care partner symposium that's annual, that is an education event for care partners to be able to participate in and hear about ways in which to not just be a good care partner to their loved one, but how to make sure that they're caring for themselves. And we also did a pilot of a care partner support group and education group that went exceedingly well, and we're planning on offering that again on a continual basis. So it's something that I think is needed and we're starting to turn a corner on how to provide the care that's necessary for care partners so that they can provide the care that they need to for their loved one.

Glen Stevens, DO, PhD:

And is there a specific support group?

Taylor Rush, PhD:

So we had done one last year as a pilot. And so, we're hoping to get one started again in the next few months. Also in the community, there are several Parkinson's support groups throughout Cleveland here. And then offer also supports for care partners, including InMotion, which is an amazing freestanding nonprofit facility that gear all services towards those with Parkinson's. And so, they also have care partner support groups. So there are things that are available. The Parkinson's Foundation also has resources for care partners that are specific to them in terms of education and support and help. So they're an amazing resource for patients and their loved ones as well.

Glen Stevens, DO, PhD:

I think you've probably touched on some of this, but practical tools for Parkinson's patients to manage their condition, they're home, they're out and about.

Taylor Rush, PhD:

So for a lot of our patients, one thing that they sometimes have trouble with accepting is that they may need some sort of assistive device. So whether that's a cane or walking sticks or a walker or a scooter or a wheelchair. And they really have trouble coming to terms with some of those devices. And we have an amazing occupational therapy team who helps people get introduced to those devices and how to manage them appropriately and successfully. And I sometimes work with patients on how to accept it mentally that this is something that may actually help improve their independence so that they can get out more and they can do more.

Physical therapy also, to me, is an amazing godsend for patients because they can learn more about how to keep themselves strong, how to make sure that they're exercising appropriately, how to make sure they can maintain their balance, maneuver stairs, maneuver crowds. And I've seen patients go into PT with some pretty debilitating symptoms and come out looking so much better. It can be incredible. And speech therapy as well, and making sure that they're exercising their voice, exercising their diaphragm, and keeping that strong. And again, can go into speech with a bare whisper of a voice and come out being able to enunciate and speak clearly and feel confident about being out in social settings again. And from my perspective, the more that people can do to keep themselves connected and engaged with the world, the better.

And so, often, those supportive treatments make such a difference. And so that's something that I tell people. And also, when it comes to getting out and doing things, take your time. Don't feel like the pressure of the clock needs to dictate the terms under which you live, because so often we think, well, it's always taken me 10 minutes to get ready, so it should still only take me 10 minutes. When in fact, it may take two to three times as long, and in which case, that's fine. Luckily, there are ways to accommodate and adjust, and just because it has been one way, it doesn't mean it has to stay that way forever if it means that you can give yourself a little bit of breathing room.

Glen Stevens, DO, PhD:

So other than hiring you, our listeners who care for patients with Parkinson's disease and want to implement some type of behavioral health program into their practice, what advice do you have to them? I suppose just do it, right?

Taylor Rush, PhD:

So one I would say is listen to your patients and their needs. That sounds pretty obvious, but sometimes when we're looking at patients, we may see one thing that they really need based on appearance and what we see as debilitating when they're actually bothered by things that we can't necessarily see. So there can be a lot of non-motor symptoms associated with Parkinson's, including GI symptoms, incontinence issues, visual issues, things like that, that you can't always tell, and that may actually be bothering them more than something observable like tremor. And so, really making sure that you dig into what it is that they need and what's bothering them, and to what extent and do you see it worsening over time in terms of their sense of control. And really making sure that they have some sense of what they can do to empower themselves for management of their symptoms.

So whether that is making sure that you give them PT or speech or occupational therapy orders, I've unfortunately seen it happen more than once. Luckily not in our center, our neurologists are really awesome. But in other places where people have told me stories about how they ask for speech therapy or they ask for physical therapy and they're told, "Well, but you have Parkinson's, it's a neurodegenerative disease, it's not going to get better." And so, they kind of get shut down on being able to learn some of those skills that would actually be incredibly helpful for them. So making sure that, you know, recognize that even though these symptoms, yes, over time will get worse, as much as we can empower our patients to utilize the tools that may be out there so that they can have the best quality of life for as long as possible.

Glen Stevens, DO, PhD:

So, Taylor, it was great having you here today. I think that the word that I would use as a village, sounds like it takes a village to look after these patients. So if physicians are out there alone, I think they need to look for resources because it sounds like these patients require it and really need it. And it's probably a disservice of it's not being offered to them. So I found it very insightful, I learned a lot. If I ever unfortunately get myself in that situation, I will advocate for myself for all the resources. And thank you for joining us today. It was a pleasure.

Taylor Rush, PhD:

Thank you so much, Glen.

Conclusion: This concludes this episode of Neuro Pathways. You can find additional podcast episodes on our website, clevelandclinic.org/neuropodcast, or subscribe to the podcast on iTunes, Google Play, Spotify, or wherever you get your podcasts. And don't forget, you can access real-time updates from experts in Cleveland Clinic's Neurological Institute on our Consult QD website. That's consultqd.clevelandclinic.org/neuro, or follow us on Twitter @CleClinicMD, all one word. And thank you for listening.