Dan Keller 0:08
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.
The brain contains two highly intertwined functions. On the one hand, it perceives the environment through the senses, and it controls many bodily functions. On the other, it is the seat of the mind, the psyche, and the emotions. Clinical psychologists focus on this aspect to diagnose and treat mental health problems. Neuropsychologists go further, seeing how the brain and the rest of the nervous system influence someone's thinking and behavior. They typically work closely with physicians to evaluate and treat people with nervous system disorders to assess their skills and abilities in the context of their disease or disorder. A person is typically referred to a neuropsychologist if a healthcare provider becomes concerned with their thinking, problem-solving, language, perceptual, or social-emotional skills. When I asked neuropsychologist Dr. Travis Turner how one becomes qualified as a neuropsychologist, he explained that a PhD-level clinical psychologist goes on for further scientific training
Dr. Travis Turner 1:56
in neurosciences, neurology, and how various neurologic conditions can affect a person's ability to think quickly and clearly, or impact mood and anxiety.
Dan Keller 2:08
How do people find you? Are they referred, or do they come to you on their own?
Dr. Travis Turner 2:12
For the most part, patients are referred to me from their movement disorders neurologist. It is true that some people will find providers like myself out in the community, or they will come directly to me with concerns, but because I focus in Parkinson's disease, they're really coming from within our clinic.
Dan Keller 2:33
What's an evaluation like? How does it start?
Dr. Travis Turner 2:37
Well, typically patients will come in with a very close family member or their spouse, and I'll just begin a general discussion by asking them if they have noticed any changes in their memory or their problem-solving ability or their speech, and kind of take it from there, so that I can really understand what the concerns are that led to the referral. I will also ask the person who came with them, because they'll have additional perspective that could potentially be very useful. It's not to say one person's right and one's wrong; it's just more to go by.
After I have a good understanding of the things that a person is able to do well and the things that are giving them trouble, I'll also ask about mood and anxiety. Certainly, we know that people with Parkinson's oftentimes have problems with depressed mood and feeling anxious, and when a person's depressed, they tend to notice their mistakes more and perhaps catastrophize the meaning of a minor slip-up. And when people are anxious, they're not able to be present in the moment and really think through things quickly, so it's very important for us to understand if there are any issues going on with mood or anxiety. How might they be relating to what appears to be a problem with cognition?
After getting a sense as to what is going on with memory and cognition and mood and anxiety, I'll also get a bit more background information—some medical history that I perhaps wasn't able to find in the chart notes that could relate to the problems at hand, such as a history of head injury with loss of consciousness, seizure diagnosis, or history of stroke, review brain MRIs, and make sure that our list of medications is accurate. I'll also get family history that could be important in terms of genetics that may be at play, then just a bit of personal context—who you are and where you're from—so I've got something to put all this information into.
Dan Keller 4:35
Is there formal testing where you get scales, so you can compare this point in time to a later point in time?
Dr. Travis Turner 4:42
Absolutely, and certainly no patients look forward to going through this formal testing. If a patient has ever had a screener done during one of their visits with a neurologist—like where they're asked to remember three things and then count backwards by sevens—the testing that we do is similar to that, but greatly expanded, so that we can really drill down and understand that if there does seem to be a problem with memory, why? Is it because of problems just paying attention, problems with comprehension, problems recalling the things that a person knows, or problems just storing new material? And we will look at, in addition to memory: attention, concentration, visual-spatial abilities, language, and executive functioning—all the domains that the Movement Disorder Society task force has really identified as being oftentimes affected by Parkinson's disease, so that we can feel very certain in making a statement about, okay, what things are going well, and where might problems be?
Dan Keller 5:45
How long does this all take? Is it a daunting task?
Dr. Travis Turner 5:49
I think from the patient perspective it does feel daunting, and so part of my role is to be a bit of a cheerleader as we go through this. It doesn't feel good to be asked questions that you don't know the answer to, and so even when people are doing really, really well, they often don't feel like they're doing well. And while the testing itself may only take about an hour and a half, it probably feels a bit longer for the patient. I always encourage a bathroom break and make sure there's water. The general idea is that we want to do all the testing that is necessary to understand if there is a problem, and if so, what can we do about it? But we certainly do not want to do testing just for the sake of gathering numbers.
Dan Keller 6:32
What do the results mean? What can you do with them?
Dr. Travis Turner 6:35
Sure, so I've been working with the movement disorders program for about 13 years now, and generally I know when a score on a particular test is good, or when it might be problematic, but the way that we formally score this up is that we compare a person's scores to their peers. So their peers would be other people of a similar age, education, sometimes even gender and ethnicity are related to what a quote "normal" score would be, so that we can really see a profile of strengths and weaknesses.
Dan Keller 7:09
I guess the question is, so what do you do about it when you identify a problem area, or if the family or the person themselves with Parkinson's says, "I'm really having trouble with this or that," what kind of things can you do for them?
Dr. Travis Turner 7:22
I think the first thing is to provide very clear feedback, and so no one will walk away from an evaluation with me not knowing what my impressions are. My impressions may change when I go and score everything up, and they will be the first to know if that is the case, but it's very helpful, I believe, for people to know really how they did and what this might mean.
So we will look at these results, and first we might say, okay, does this look like the typical kinds of changes that we see or expect with Parkinson's disease, or might this be something else? Is there something else going on that we need to be aware of? We will then also take a look at perhaps medications that could make a difference, that could help with memory or cognitive functioning, or help improve upon a person's mood, or help them better manage anxiety. And then also look at medications that might be clouding things up, or things that they might be doing that are not so helpful—for instance, not socializing or being physically active enough, or problems with having a regular sleep pattern, what we like to call sleep hygiene.
And for a number of the patients that I see, deep brain stimulation, or DBS surgery, is something that is being considered, and we can use these results first to say, is this a good idea, or might this not be such a good idea for a particular person? And we then also establish a very clear baseline, so that if a person does have the DBS surgery and experiences an untoward change afterwards, we can go back, retest, and see if, in fact, anything has changed, and then address it very specifically.
Dan Keller 9:03
Since you bring up DBS, is there a role for you in helping them adjust their expectations—what DBS might do for them, what it might not do for them, especially from the neuropsychological standpoint?
Dr. Travis Turner 9:16
Fantastic question. And yes, when a person is considering DBS surgery, they will have discussions with their general neurologist, their movement disorder neurologist, the neurologist who is in the operating room with the patient, and the neurosurgeon. And when we have our team meetings, it often is the case that patients have told different things to all of these people in terms of what they're hoping to gain from the surgery, what their expectations are, and when these are discrepant—and oftentimes I'll hear something that's different—we can go back and have a direct conversation with the patient, so that they are not left feeling disappointed, like the surgery didn't address the problems that they came there for.
Dan Keller 9:58
Are there difficult discussions? I mean, one thing might be social interaction, driving, whether it's recommended or not.
Dr. Travis Turner 10:06
Yeah, you really hit on a big one there. Driving is one of my least favorite conversations. The other that I see more in South Carolina than I did in California is handguns and other guns in the home. So, with driving, the laws vary state by state, but in South Carolina, we strongly recommend that someone who has significant cognitive issues that show up on testing also go through a formal on-the-road assessment. It's not necessarily the case that struggling on cognitive testing means that driving isn't safe, but it certainly can be, especially when you consider that there may be movement problems as well that could interfere with driving.
And certainly with gun safety, problems with being able to systematically do things and having attention to detail—I have seen them lead to a number of problems with different individuals in cleaning their guns, loading their guns, and things like that. So that's another challenging discussion. Other things that we'll recommend would be maybe not doing certain tasks, like using powerful household chemicals or power tools, if the focus and the ability to multitask isn't there anymore.
Dan Keller 11:14
It seems that these tests and evaluations are a snapshot in time, in the present. Do they have any prognostic value?
Dr. Travis Turner 11:22
They do, and certainly, as everyone with Parkinson's, or who knows someone with Parkinson's, has seen, it's variable, and we have a hard time predicting change in how quickly the disease may progress. But certainly when we see problems with more severe impairment in memory or more severe impairment with speed of thinking, that usually tells us that we may be ready to see some more significant changes in a person's ability to do everyday tasks. When we see problems, for example, with visual-spatial functioning, they may also go hand in hand with the visual hallucinations that can sometimes come up, and that oftentimes is not a good prognostic indicator.
Dan Keller 12:06
Do you do repeat testing at some interval, or any regular intervals?
Dr. Travis Turner 12:11
Not necessarily. In some centers, people are seen on a yearly basis, at the very least, to put a finger on the pulse, if you will, of how someone's doing in terms of memory and cognition. We simply don't have the personnel to do all of this testing for all of our patients, and I'm not entirely sure it would necessarily be all that helpful. We will do repeat testing when someone feels like there has been a significant decline, or they're no longer able to do something efficiently that they could once do before—for example, bills, or could perhaps be driving or continuing to work. Then we'll want to do a repeat assessment and use the numbers that we got from the prior assessment as a baseline, which is really very nice for surveilling for changes that could potentially come up.
Dan Keller 13:00
Before someone avails themselves of your services, should they mention that they would consider doing neuropsychological testing, or they think they could benefit by it, with a neurologist or movement disorder specialist, or should they come straight to a guy like you?
Dr. Travis Turner 13:16
In my particular case, it would be a little challenging to come straight to a guy like me just because of the way that patients are referred to me. If someone is being seen in a movement disorders center, it would probably be best that concerns of changes in cognition are mentioned during those visits, and that perhaps a more thorough evaluation would be desirable. And I think that most folks will find that that referral is put in pretty quickly.
If someone is not being seen by a movement disorders neurologist, but is instead being followed in the community by a neurologist, it would be good for them to not only request the neuropsychological testing, but also request that any of the records from their visits with a neurologist are sent over, and that the neurologist also be very clear in that referral information about how Parkinson's and the treatments they've had may be affecting cognitive functioning.
I'm very privileged to be working in a movement disorder center around movement disorder neurologists who can continually educate me on new drugs that may be coming up in therapies and things that are being learned. That's not always the case for someone like myself who is out in the community and seeing kids with ADHD, people who have had head injuries and stroke, and the like—they're not going to be able to have that in-depth understanding, so the more information that a patient can bring to their visit, the better.
Dan Keller 14:44
Is there anything important we've missed?
Dr. Travis Turner 14:47
I don't think so. I would just encourage folks who are going to have a neuropsychological evaluation to try their best to get a good night of sleep before coming in, to take their medications as they normally would, to have a good meal. If there is travel that's involved, maybe consider trying to get there a day early if they're able to sleep well in a hotel, or there's friends or family who live nearby. We really want to see people at their best, and while going through this can be a stressful process, to the extent that we can reduce that stress and really see someone at their best, our numbers will most accurately reflect brain function at the time we see them.
Dan Keller 15:31
Very good, I appreciate it. Thanks.
Dan Keller 15:41
As Dr. Turner mentioned, if you think you could benefit from a neuropsychological evaluation, mention your concerns to your healthcare provider and see if a referral would be a good idea, especially if you are seeing a general neurologist and not a movement disorder specialist.
To learn more about building your Parkinson's care team, you can listen to episode 30 in this series, titled "Team Care for PD: Why It's Important." Also, Episode 27 discusses cognitive and behavioral changes in PD, and numbers 36 and 37 cover depression and mental health. For information on finding healthcare professionals with special expertise in PD, including neuropsychologists, you can call our toll-free helpline.
Dr. Turner was featured on the mental health panel of the 2020 Care Partner Summit, which you can view in English or Spanish at parkinson.org/summit. Many of our expert briefing webinars involve topics that neuropsychologists deal with, such as cognition, sleep, and mental health. For a listing of these webinars, just go to parkinson.org/eb and you will see the option to view our archived webinars, available on demand. Many of these topics, and more, are covered in our library, available at parkinson.org/library.
And, as a reminder, our free Mindfulness Mondays continue online as part of our PD Health @ Home virtual educational and wellness programs. To register for upcoming Mindfulness Mondays, go to parkinson.org/pdhealth. New Mindfulness Mondays are coming up, and past ones are archived on our website as well. Both podcasts 78 and 80 are good introductions to what mindfulness is and what it can do for you.
As always, our PD Information Specialists can answer questions and provide information in English or Spanish about today's topics or anything else having to do with Parkinson's. You can reach them at 1-800-4PD-INFO. To receive news and updates about future events and resources, you can opt into our email list at the bottom of our website's homepage. If you have questions or want to leave feedback on this podcast or any other subject, you can do it at parkinson.org/feedback, or if you prefer, email us at podcast@parkinson.org.
If you enjoyed this podcast, be sure to subscribe and rate and review the series on Apple Podcasts, or wherever you get your podcasts. 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. Until 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. This episode is supported by a grant from Genentech, a member of the Roche Group. Thank you for listening.
