Harness Mindfulness To Navigate Parkinson’s

Barbara Pickut, MD, MPH

Thank you, Dr. Sharlin. It’s an honor to be here today to be able to speak about people with Parkinson’s and their experiences with mindfulness-based stress reduction.

Kenneth Sharlin, MD

There is a long history of utilizing this tool in general and understanding how it can help people with chronic diseases. Going back to some very classic studies that have been published looking at cardiovascular disease and prostate cancer, you studied at the University of Massachusetts, which is sort of the Mecca of mindfulness-based meditation. Tell me how you got interested in this in the first place as a neurologist.

Barbara Pickut, MD, MPH

Well, we were performing the clinical studies back in the midnight nineties, and the dopamine agonists that were arriving on the scene were doing important work. We were very interested in being able to offer people with Parkinson’s something beyond sinemet, carbidopa and levodopa. I was very encouraged, and the clinical trials were a good way, as a young resident, to learn the disease very well because we had to pin things down. We did that and worked very hard, and I was left with a sense that, despite the promise and the excitement that we were experiencing with having this opportunity, there were facets of people’s life experiences—the lived experience of Parkinson’s—that weren’t being addressed. People would have traumatic stress events that they would come to us and tell us in very gripping stories. Many of these stories I still remember very vividly, and I would ask us, “Do you think that this event caused my Parkinson’s?” In the academic center that I was in at the time, I found it very difficult because if I were to speak with the people who were there, full professors in the department, they would say, “No, these are anecdotes.”

I carry them with me. I started teaching mindfulness back in the early 2000s, teaching mindfulness-based stress reduction in a stress clinic in a hospital, and I remembered that the folks that I had met earlier in these clinical studies were searching for something to help improve their quality of life. At that time, 2006 was the first cohort in which we offered mindfulness-based stress reduction to people with Parkinson’s, and then along the line, also for people with Parkinson’s and their care partners, which is a very interesting dynamic so that people can realize, recognize, and utilize mindfulness as a tool in daily life.

Kenneth Sharlin, MD

Well, why don’t we step back just a little bit? We’ve used the term mindfulness-based stress reduction several times and just want to help folks understand a little bit what exactly that is. What are we talking about?

Barbara Pickut, MD, MPH

Yes, so mindfulness has become a buzzword. It’s also appeared on TIME magazine covers, mostly with folks that don’t look like me and you. most of us. These are it’s kind of the hype, and there are articles out now in mind the hype about mindfulness. When we talk about mindfulness, we’re talking about an inherent human capacity, and we all have this capacity for mindfulness, and some folks have more than others. It’s this capacity that’s expressed differently in different individuals. The thing is, it can be trained. Mindfulness is a process, and it’s defined as bringing attention and awareness to moment-to-moment experience on purpose without judgment and, most importantly, without cognitive elaboration. It’s seeing what’s there. We feel pain, we feel sorrow, and we feel joy. Those things are there. But it’s about recognizing that fully, not ruminating about the negative, and not going overly into the positive side as well.

Kenneth Sharlin, MD

Yes. My wife does a lot of this work, Valerie. She’s an interviewee at the summit as well. One of the things she talks about is sort of a perception that perhaps some people have that if they’re practicing a mindfulness-based meditation approach, they’re supposed to clear their mind and not think of anything. But you’re saying quite the opposite. It’s okay if these thoughts come in. It’s how we sort of wrap our arms around those thoughts.

Barbara Pickut, MD, MPH

Indeed. Very well put. Yes. It’s not about clearing the mind. It’s about seeing what’s there. The reality is that they’re running away from reality psychologically, which takes a lot of energy. It’s this process of realizing that in the first place. The reason for classes such as mindfulness-based stress reduction or mindfulness training is that, through the training, one gains experience and learns to examine thoughts. It’s one idea. It’s one thing to have the idea; it’s another thing to embody that in a non-judgmental way.

Kenneth Sharlin, MD

As for mindfulness-based stress reduction and maybe associating the word meditation, sometimes it’s easy to just sort of think of being in the lotus position, back straight, and doing some kind of breathwork. That’s a very, very powerful and effective thing to do. But it’s my understanding that mindfulness can be applied in many situations, even if you’re just at the sink washing your hands and letting the water run over your fingers, or if you’re on a walk, for example.

Barbara Pickut, MD, MPH

Most of us don’t have the opportunity to sit in a cave and spend time exclusively meditating. We have life, and one of the things that comes from the training and one of the discussion points during the training is how to apply mindfulness in daily life, how to be mindful more than just the jargon word suggests, but to apply it, and there are tools that people are given. There’s an app that you get a text message from, go from one room to the next, and realize the space, feel the space, sense the space, and see what thoughts and emotions are brought to you. There are ways to apply this to daily life. It’s a work in progress. Dr. Sharlin and I are a work in progress.

Kenneth Sharlin, MD

As human beings, we all are.

Barbara Pickut, MD, MPH

Yes.

Kenneth Sharlin, MD

We talk about folk stories in our brains about the program at Shoreline Health; we talk about folks; we share folk stories. We listen to a lot, but we hear a lot. I just wish I could get back to the way it was before I got sick. I’m like, “Oh, this is the former journey.” We want you to be the best version of yourself. Sometimes we have to say, “Look, the version of yourself before you got sick is sort of how you got here.” We have to continue to grow and evolve. But how does stress play a role as a risk factor in the development of Parkinson’s in the first place and the expression of the symptoms of Parkinson’s disease?

Barbara Pickut, MD, MPH

Yes. Stress is ubiquitous. Stress is everywhere. It’s a natural part of life. In relation to mindfulness, this psychological stress that we have is a matter of using mindfulness, which is how we perceive the stress, the ruminations, and the cognitive load that brings us to ruminate. This is a highly individual quality. Some people worry less than others, but worry is a source of stress, so the idea that stress is a risk factor for Parkinson’s has been debated. It’s been hotly debated. In fact, when I told you earlier about people that I was concerned with—people with Parkinson’s who were serving—they had difficulties with anxiety and stress. leading forth from their experience with Parkinson’s in life. The general feeling at the time was no; stress is not a risk factor. But the idea that stress is a risk factor is not new. In fact, 100 years ago, Sir William Richard Gowers, who is considered by some to be the father of clinical neurology, said that emotional shock and anxiety often precede PD. There was a lot of debate about whether or not that was true in the years that followed. But importantly for us here today, we’re now coming to see that stress is maybe a modifiable risk factor in Parkinson’s, both in the acute stage and the chronic stage, and even in the prodromal stage.

Kenneth Sharlin, MD

Right.

Barbara Pickut, MD, MPH

We learn from our patients who have chronic stress that there is an exacerbation or aggravation of symptoms. We hear this in the clinic all the time when people say, “I’m in a store, and I have my change purse, and there’s a super line behind me at the cash register at the end. The person at the cash register isn’t particularly friendly, and I have to get my card, my change, or whatever out of my wallet, and my tremor just goes. What do I do?”

Kenneth Sharlin, MD

Right.

Barbara Pickut, MD, MPH

It’s in those moments that mindfulness can be applied that people can connect with their own capacity for mindfulness and bring the nervous system back to some rest. I had a gentleman seven years ago who, for example, was someone I followed in a clinic. His daughter was getting married, and he was to have a father-daughter dance with her. This gentleman with Parkinson’s had a freezing gait.

Kenneth Sharlin, MD

Oh.

Barbara Pickut, MD, MPH

You can imagine a huge dance floor and everyone looking at him. The marriage plans were for the next year or so. It wasn’t immediate. Well, he enrolled in one of the mindfulness stress reduction programs that we had, completed the program, did a great job, showed up, and did his practices. He came back to tell me that he was able to stand up and was able to monitor his inner voice, his feelings, and his heart pounding. Recognize that those things are natural and normal. To get beyond that, he was able to get to the dance floor without music because, as you would think, oh, it’s cueing. He’s getting there. Now he was able to get there. Then an upbeat song came on, and he was able to have that dance with his daughter.

Kenneth Sharlin, MD

I’m just curious, and this may be a slight digression, but have you noticed if certain types of rhythms or tempos are better for people with Parkinson’s at all when it comes to dancing? Because there are some data on dance just from a movement therapy perspective.

Barbara Pickut, MD, MPH

Yes, certainly my experience with cueing stress falls within the realm of cueing strategies. There are a lot of publications about cueing strategies, and the work of Beth Bloom and his team is very knowledgeable and helpful in that area. I’m not aware of any particular type of music, but I would just assume that it might be music that has a rhythm to it that is like, let’s say, freezing gait. There used to be devices that people would wear that would tap, and they would give them a tap. But the problem is that the cadence has to be something that is biologically consistent with the person. If we were to play Mozart, it might not sync well with someone—one of the young parakeets, I don’t know. But what I’m trying to say is that it’s highly individual.

Kenneth Sharlin, MD

It would throw them off if we did Beethoven’s Fifth because it just goes on.

Barbara Pickut, MD, MPH

Right. Yes.

Kenneth Sharlin, MD

I wonder if some of this is true. First of all, we do have to emphasize—we talked about this a lot on the summit—that there is a biological stress response system in the body. That’s just part of how we’re wired. It’s connected to our limbic system. There are hormonal and neurotransmitter dimensions to this. then it spills down into the effects on the immune system and mitochondrial function. So stepping back from a disease-centered perspective to more of one to why we get sick in general, this is something that is within our power to an extent, to a large extent, to affect. as we improve overall function because we know that this has effects on the immune system, mitochondria, and gut health, which have been very much connected to Parkinson’s disease. It sort of stands to reason, perhaps without even a clinical trial to back it up, that this can have a very positive effect. There is also a dimension. It’s a little bit like a chicken and an egg, but we know that there are non-motor symptoms of Parkinson’s that are part of that disease. Whether we are sort of that personality type or not, that’s the general concern when coming into that experience. Parkinson’s, there’s also the recognition that sometimes the neurodegenerative changes that are in fact Parkinson’s changes are the wiring of that part of the system. It warrants attention beyond just giving someone levodopa. Would you agree with that?

Barbara Pickut, MD, MPH

Yes. In fact, people with Parkinson’s who do not engage in task-oriented coping strategies may be at a greater risk for developing depression and anxiety and have poorer quality of health measures. With chronic stress in PD, we see that there is more of a risk of depression and anxiety because those publications exist. Coping strategies are very important in mindfulness as a coping strategy. There are others, but we have evidence that these coping strategies can be very helpful, in fact, for depression and anxiety outside of Parkinson’s. There was a recent head-to-head study with mindfulness and escitalopram that’s given as a treatment for anxiety. There was a clinical study, and the conclusion was that mindfulness was not inferior to escitalopram in the treatment of anxiety.

Kenneth Sharlin, MD

This reminds me of some of the studies that were published. going back to the nineties again, looking at prostate cancer or looking at cardiovascular disease, and folks who might be randomized into a group that had more traditional medical therapy versus those that practiced a mindful risk-based approach and integrated other lifestyle factors such as diet and exercise. But they were dramatically able to modify their disease trajectory without some of the traditional interventions. What has been happening? Tell me a little bit about what’s been kind of coming out of the research literature that you’ve done in terms of mindfulness-based stress reduction and some of the metrics that you’ve used.

Barbara Pickut, MD, MPH

It’s important to understand that this perception of stressful events and the processing thereof has an impact, psychologically and physiologically, on the fight or flight mechanisms. It’s the perception and the ensuing processing of stressful events where mindfulness can be useful. We’ve conducted a number of studies on Parkinson’s and mindfulness. Back in 2013, we did an imaging study. To this day, to the best of my knowledge, the only one that’s been done in Parkinson’s and mindfulness is what got us thinking in this way: Sarah Lazard published, I believe, in 2005, a study that she had done on long-term meditators that showed a difference in cortical thickness in long-term meditators as opposed to controls, which were age-matched, education-matched, and socioeconomically matched in the Boston, Cambridge area. There was an increase in cortical thickness. But there are other deep structures—subcortical structures—in the brain that play a role in Parkinson’s. It was an interesting study, and the outcome of that was that the meditators who were in the 40 and 50 year olds had the same cortical thickness in their frontal areas, which is where we often lose cortical thickness in aging, and that their frontal cortices were equal to those of the 20 and 30 year olds.

In this study and the controls of the young age of 20 to 30 year olds, that showed that there was less loss of cortex in these individuals in this study. That was a tagline for the popular press. “Oh, meditation makes the brain grow.” Well, it’s not that simple. That kind of simmered for a while. Then the technique came out to be able to look at the whole brain and subcortical structures, and that’s using a technique called voxel-based morphometry. Using that technique, images of people and long-term meditators started to be studied, and we could identify areas of the brain that were impacted by mindfulness and showed less release. Also the amygdala, for example, in long-term meditators as compared to controls. That was very interesting. Then researchers also published a study on mindfulness in a population of people seeking stress reduction at a stress reduction clinic. We’re not talking Parkinson’s here, and using this VBM, or voxel-based, or morphometry, they could show that after eight weeks, there were measurable brain changes. I said, Just like you.

What did we do? We set up a study to look at people with Parkinson’s. We used a control group whose treatment is usual, which, in retrospect, should have been in active control. But active controls are tricky because what did they learn doing the active control? That’s being worked on. But in any case, back in that time and talking 2013, we used a waitlist control for this population. We enrolled people before and consented to them, and they started. We took a number of clinical measures ahead of time. We updated the unified Parkinson’s rating scale in all its parts. We did the PDQ39 and all its parts, as well as a number of other metric measures. After eight weeks, we found that the order of magnitude of change in the brains of people with Parkinson’s was equal to that found in the general population.

There were also changes in the amygdala, and these people had more right-handed changes in the left cerebellum, which accounts for motor compensation. It was interesting work. I was left with the feeling that we’re not doing enough, that there are things that we’re missing, that this training, this mindfulness training that people had had and were telling us after the fact, in conversations in the hallway or at the follow-up conversations in the clinic, that there were reflections that they had, that we were not capturing the positive reflections, that we were not capturing, that the routine clinical scales weren’t capturing. We decided to do a new study using qualitative measures in the form of a focus group. Some very interesting things came out of that study. We found that people had four bodies. What we did was analyze the data, do the routine measures, and also have the focus group results. We found that there were things that people were saying in the focus group that weren’t picked up by the routine clinical measures. For example, there were some statements in the focus group suggesting that there was an improvement in body sensations, pain reduction, and mobility, but that wasn’t picked up on the UPDRS motor part 3. We had people talk about coordination and coping, and those weren’t picked up in the PDQ39: Coping and Well-Being. We did have some very interesting findings here, and this is also found in the work of other people on social support; in fact, the group effect came out as a very robust finding.

But people said that for the group effect, they expressed gratitude to the group, saying that eight out of ten of them mentioned the importance of social support as a positive outcome of their participation in this group training in mindfulness. They pulled strength from each other. I can read you some of the comments that the folks made. This has been published in abstract, so I’m sort of sitting on it right now. But the participants often expressed gratitude to the group and overwhelmingly expressed positive experiences with their shared understanding. Eight of the ten people in the group mentioned social support as a positive outcome for their family and their future lives. People also found that it was intrinsically tied to this feeling of transcendence or spirituality that they had within the group. They talk about this quote. “The teacher kind of brought us all together, and we kind of just know certain things people say about how to communicate. We all had the same disease, so we all communicated. It’s kind of like whales.”

Kenneth Sharlin, MD

Well.

Barbara Pickut, MD, MPH

Then they continued saying it was nice because we drew on honesty and people. You could tell when something was wrong without speaking. An example of research reciprocity that was empowering. We pulled away from each other. We pulled strings. Everyone wants the other person to succeed and not quit. Another participant described the impact of the MBA training and a group setting and says this group has been wonderful, and I’ve been able to take things from all of them, the other people.

It’s also given me courage, and we see this as an opportunity to provide monthly meetups online for people who have studied Parkinson’s. In the monthly meetups, which are Zoom meetings, we do breakout groups, and people can meet up with each other for some time during the meeting. They really express joy and gratitude by connecting with others in that way. This desire of people with Parkinson’s to connect with others and find emotional support has also been reported in the literature. In the study that Kwok did, she performed a study of people with Parkinson’s and compared mindfulness yoga to physical therapy. They note the importance of mindfulness therapies, specifically as they assist people with Parkinson’s with their symptoms, such as their connection to others. They talk about transcendence as well, and they conclude that this points to a need for interventions that may help people with Parkinson’s effectively manage their disease. There are also two short things that I want to mention in connection with that. There have been surveys published using a multidimensional scale of perceived stress and social support. In these surveys, we see that the social support reported on this scale, in PDQ-39, was a predictor for all the domains of quality of life. That single factor, social support, was predictive of all domains of quality of life. Another survey, the last one, had 238 participants—people with Parkinson’s. Another survey of 124 people found, and these were from three different online support groups, that the perceived emotional support increased the psychological quality of life for these people on these measures.

Kenneth Sharlin, MD

That’s so interesting because one of the dialogs that often comes up in an interview with folks, not just with Parkinson’s, Alzheimer’s, ALS, and multiple sclerosis, but especially with the Alzheimer’s and Parkinson’s patients, is that even if historic, as a personality trait, they tend to be very social individuals with the onset of these illnesses, and very often there’s a withdrawal. There is, “I don’t want people to judge me. I don’t want to be seen like this. I don’t want people to remember me like this.” What I’m hearing from you is, even outside of mindfulness-based meditation, that human connection is so critical for thriving with these conditions.

Barbara Pickut, MD, MPH

Yes. To get the word out, one of the issues that people with Parkinson’s have with going to groups is that they’re afraid of being seen. Sometimes being with your peers is comforting and sharing, and it can open doors. There was a study in 2017 by Shapira, who did a review of patient blogs and found that social support was a big factor in their wellness.

Kenneth Sharlin, MD

Often, people even think of mindfulness work as being an inherently sort of isolationist. I’m not sure if that’s really the right word, but it’s something that we do in our quiet time by ourselves.

Barbara Pickut, MD, MPH

Privately.

Kenneth Sharlin, MD

But in fact, what we’re hearing is that this may not just exclusively apply to mindfulness-based stress reduction. It could be a rock-steady boxing class, a dancing group, or a group cycling, all of which have good, scientific data behind them. But connection—go to a class, connect with other people, find community. That is yet another tool in the toolbox when it comes to thriving.

Barbara Pickut, MD, MPH

You pointed to an aspect of the private yes. In addition, during these mindfulness classes, people meditate together, do mindfulness yoga together, and do body scans together. You can do these practices together in a park. It’s a matter of training. Getting people trained in this trait of mindfulness, which is a trait, is something for which we strive to make a lasting trade. But like learning to play an instrument, one has to practice.

Kenneth Sharlin, MD

As we are getting toward the end of our interview, this is a great summary. If I want to learn how to practice mindfulness, how can I do that? What are your recommendations?

Barbara Pickut, MD, MPH

Yes, choosing a place to work and a teacher is important. I would recommend that people with Parkinson’s discuss this with their health care provider. “I’m thinking of doing this. What do you think?” particularly about people who have on-offs that may be troublesome, to maybe get the medication as stable as possible. There are no regulations on who can teach mindfulness, and I would gently advise people to look into the qualifications of the person who will be teaching them. General speaking teachers that are certified in the big schools say that UMass has that brown that you see in San Diego. There are a number out there, but these training programs are rigorous, and one is required to have practiced for hundreds and hundreds of hours before teaching.

People would be advised to look into the credentials of a teacher, speak with the health care provider, and get their okay on it. In preparing for the sessions, it’d be good if people could be on medication. Not easy to plan, I realize that, but perhaps some refinement of the medication schedule ahead of time will increase the likelihood of being in on there are rescue medications for Parkinson’s, and some people use them, and they could have them close at hand during the sessions. People should show up and be fully present to participate. But that doesn’t mean you need to talk. You can be a silent observer. Most of those people do their practices, but they come loose as time goes by. It’s interactive with the teacher and with the participants. If it’s an online course, people should prepare a quiet place where they will be undisturbed and maybe have something to take notes with.

That would be my advice. We currently teach online. I’m also bringing this material to the International Movement Disorder Society Task Force on Wellness, of which I’m a member. We have a program that we’re teaching now for two people with Parkinson’s exclusively and one with people with Parkinson’s and their caregivers together, and we are planning on teaching a class for caregivers of or care partners that is said of people with Parkinson’s exclusively because sometimes things want to be said in a group of care partners.

Kenneth Sharlin, MD

If someone wants to participate in one of the classes you’re talking about online, how would they find that?

Barbara Pickut, MD, MPH

There is a website; it’s called parkinsonsmindfulness.com, and they can email me at [email protected], which is long but complete.

Kenneth Sharlin, MD

Wonderful. Well, now we have voice recognition and all kinds of adaptive things. Folks can do this, and I certainly encourage it. You come from a long tradition of really high-esteem people like Jon Kabat-Zinn from the University of Massachusetts at Amherst. We really appreciate the work that you’re doing to bring this important skill and this important information to folks who are suffering from Parkinson’s disease. I often say this because we focus on a multimodal approach where we’re focusing on sleep, nutrition, movement, and mindfulness-based stress reduction as well. Folks often want to just sort of pigeonhole and say, “Well, I can really work on my nutrition.” That’s valuable. But if we’re not paying attention to sort of the other muscles that we need to kind of tone up and strengthen, it’d be like, “I’m just going to work on my right arm, but not my left arm, and just going to get one leg strong, but not the other leg strong.” This is a critical part of wellness and is a powerful tool when we think about healing and transformation in Parkinson’s disease. Well, Dr. Barbara Pickut, thank you so much for participating in the Parkinson’s Solutions Summit today. I encourage folks to check out your website, participate in your class, and just become students in general. This long-standing tradition in America has helped many people with a variety of complex chronic diseases.

Barbara Pickut, MD, MPH

Thank you. It’s been an honor. Thank you.