Dan Keller 0:00
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.
When people with Parkinson's disease see their neurologists and other members of their health care team, often the focus is on the disease, but a person with PD is more than a body with a disease. People bring with them their personal and social experiences and, of course, their problems that existed before their PD diagnosis. Licensed clinical social worker Kara Barton at the University of Southern California says that while the disease may impose added mental distress, any mental or emotional issues need to be viewed in the context of the whole person. In terms of addressing mental health in a medical setting, do physicians do it, or who should be handling this?
Kara Barton 1:29
Well, in our clinic, it sort of depends where in the office the patient kind of falls apart in the clinic, or who the patient discloses distress to. So sometimes the patients or the caregivers or the people with Parkinson's will say something to the neurologist or cry, or to the nurse practitioner, or they'll call in for a medication issue and then disclose something else. And usually that person will refer to the psychosocial division in our clinic.
Dan Keller 2:04
You're in a fairly good-sized center, so there's lots of resources available, I would think. Is this available to most people who are seeing, say, private community physicians, or how would they access these services?
Kara Barton 2:18
That's a really good question. Where we are, if you have insurance that covers mental health benefits and we are on your plan, you can see us in our clinic. So we have about three or four licensed providers who can be seen if we're on your medical plan. A lot of plans actually carve out their mental health benefits, and there is not parity. Although the law mandates it, there's a huge copay for a lot of people, so they can't do it. So what we do to get around that is, in our clinic, we will refer to our interns who will see the patients for free for the length of an academic year, or we will refer to community resources. I don't know how community neurologists handle these issues, but I would say anyone who's living in a reasonable community that isn't too rural can either call their insurance company or call a local mental health provider and ask for sliding scale. So if there's a financial issue, you can ask for sliding scale, and they'll ask you about your income and you pay what you can pay. And also, if you're near a university, you might be able to get involved with a counseling program, either through the psychology department. So it may not be a permanent situation where you see someone forever, but you could at least get some sessions and work on a plan for wellness.
Dan Keller 3:35
Is there something different about addressing mental health issues in a medical setting, from, say, someone who's not facing a chronic illness?
Kara Barton 3:44
Absolutely. A number of people come into a medical clinic and they want the doctor to fix their body, and they think of their mind and their brain as something separate. And a lot of people culturally believe that mental health issues are crazy people's issues, and you must be calling me crazy. The way we look at it is you are a whole person, and so if you're in distress or you have a major diagnosis, you would want to support your whole being. So sometimes, for people, if the doctor says, “See the counselor, see the therapist,” they'll follow up, because it's a prescription from their doctor, so it can help us reach more people who may not get mental health care.
Dan Keller 4:27
What sort of problems do they come to you with?
Kara Barton 4:30
Well, initially, I would say people come on the pretense that they're distressed about their diagnosis, but because we treat the whole person, when you're dealing with a chronic illness, you're dealing with chronic and perpetual loss, your loss of identity, grief about the things you didn't get to do, or that you did wrong, or you're in a transitional phase of who am I? What does my life mean? What is my sense of purpose? So maybe initially it's about tremor, or it's about I can't write, or my memory's changed, or I don't like being in public, or I can't do what I used to do. And then we get into the deeper issues of being a human being and not having something stable to grab onto.
Dan Keller 5:16
How much do they invest? I know everyone's different. In general, would you say they invest in the illness as a cause of things that have been preexisting anyway? Does this bring out preexisting problems that should be addressed anyway?
Kara Barton 5:36
Absolutely. I mean, one of the difficulties as clinicians for us is when people are in really unhealthy relationships and they feel like they can't get out, or they made poor financial choices. Whether it was disease-oriented or related or not is irrelevant, but certainly Parkinson's lands in your life wherever you are, and then whatever you did or didn't decide before is affected. So we often are trying to work with people to come to grips, so to speak, with wherever it landed in their life.
Dan Keller 6:08
What kind of advice would you give people who are facing emotional, mental issues, even if they don't know that that's what they are, in a medical setting? If they're feeling certain ways, should they recognize those as mental health issues?
Kara Barton 6:24
There's a couple things. One is, you know, if you're just not yourself, you just don't feel like yourself, that's a part of your experience. So share that with your doctor, and then the doctor should be able to screen you for depression or anxiety. We find that a lot of people with a history of anxiety and depression actually get worse with the Parkinson's, but for some people, they don't even know what to call it. So if you're sleeping too much, not sleeping enough, your appetite has changed, you have a lack of interest in things that you normally are passionate about, you feel a loss of purpose or identity, it's a mixed blessing. It's an opportunity for you to say, I'm having trouble, go find some resources, and then restructure how you live your life, because you're still here.
Dan Keller 7:10
How much do you advocate pharmacologic treatment? How much of it is talk therapy?
Kara Barton 7:17
Well, we actually, in our clinic, will refer to a psychiatrist. So we usually start with the neurologist, and it really depends on the mental health history of the patient. So if the patient has a history, we'll refer to psychiatry, and the neurologist and the psychiatrist and the therapist will all work together. But I believe most evidence bears out that if you have mental health distress, that you do better to couple any medicinal treatment with talk therapy, and so some people try one or the other. But if you're really not doing okay, why not tap all the available resources?
Dan Keller 7:55
Is a licensed clinical social worker more apt to engage in talk therapy these days than psychiatrists?
Kara Barton 8:04
Actually, yeah. There was a book that came out a couple years ago. I think only 11% of psychiatrists do talk therapy. So the clinicians who will provide mental health treatment are usually licensed clinical social workers, and we have a systems focus. We look at the person within the environment, not just you or something's wrong with you. We'll look at how you're functioning in the whole setting. And then licensed marriage and family therapists, LMFTs, and psychologists, so any number of those.
Dan Keller 8:35
Anything we've missed or is important to add?
Kara Barton 8:38
One thing I like to think about is I often give my card to people when they're in a crisis, and when they get through the crisis, I say, “Keep me in your back pocket.” You know, as this disease changes or your life changes, reach out. You may come in for some sessions and then disappear for a while and then call me when something else comes up, but then, you know, you've got this system around you that you can tap as you need it. The other thing is, if you're in an environment where you can't get someone who knows about your disease, you can sign a release for your therapist to get permission to speak with your physician, your neurologist, and that way they can maybe get a better understanding of what the issues around your disease are, or you could have them just order the resources from the Parkinson's Foundation, because your therapist could read up on those things. And another thing is, if you're in a rural environment, you might want to look into telehealth. Even in our urban environment in Los Angeles, the School of Social Work is piloting a telehealth program, and sometimes they'll take insurance. And now I have mixed feelings—there's an app for that too. Talkspace is an app where you can get text therapy. So for some people, depending how text-savvy you are, there are lots of ways. And I think the first place to start is, remember you're an entire person. You're not just a person with Parkinson's, and communicate what's going on with you to your physicians.
Dan Keller 10:02
Are there any good screening questions physicians should be using when they see a patient to figure out if they may need further mental health counseling?
Kara Barton 10:12
Generally now, especially with Medicare, there's sort of a mandate to be screening for depression, so mostly asking questions like, “Have you been feeling sad?” not doing your normal activities, and any irregularities in your usual functioning. It's tough with Parkinson's, because if you can't read the facial expressions, you're not getting the visual cues, but the questions about how are you spending your time, what did you used to do, a lot of sort of open-ended questions to explore with a person how they're being now with their diagnosis.
Dan Keller 10:46
Very good. I appreciate it. Thanks. To find out more about PD and mental health, search mental health on our website at parkinson.org and order a free copy of our Mood and Cognition: Mind Guide to Parkinson's Disease publication, and don't miss our upcoming expert briefing on mental health and PD with Dr. Laura Marsh, Professor of Psychiatry and Neurology at Baylor College of Medicine, where she'll focus on the overlap of motor, cognitive, and psychiatric aspects of PD, along with general approaches to treatment. Join us for this free online webinar designed for people living with Parkinson's, care partners, and health professionals next Tuesday, September 18, 2018, at 1 p.m. Eastern Time. Sign up at parkinson.org/expertbriefings. And as always, you can also call our toll-free helpline to speak with our PD information specialists. They can answer questions and provide information about this topic or anything else having to do with Parkinson's. You can reach them toll-free at 1-800-4PD-INFO. If you have any questions about the topics discussed today, or if you want to leave feedback on this podcast or any other subject, you can do it at parkinson.org/feedback. At the Parkinson's Foundation, our mission is to help every person diagnosed with Parkinson's live the best possible life today. To that end, we'll be bringing you a new episode in this podcast series every other week. Till then, for more information and resources, visit parkinson.org or call our toll-free helpline at 1-800-4PD-INFO, that's 1-800-473-4636. Thank you for listening.
