Dan Keller 0:02 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 someone is first diagnosed with Parkinson's, medications are often the first thing that comes to mind, but it's just as important to talk about complementary or non-medication options with your healthcare team to build a care plan that fits your needs. In today's episode, we'll explore mindfulness, one example of a complementary therapy that may help manage Parkinson's symptoms. Mindfulness is a technique that involves noticing what's happening within yourself and in your surroundings in the present moment without judgment. The American Psychological Association says mindfulness can help people avoid destructive or automatic habits and responses by learning to observe their thoughts, emotions, and other present moment experiences without judging or reacting to them. It can give a sense of calm, help manage pain, reduce stress, and improve clarity of thought and mental well-being. I spoke with Crista Ellis, a yoga and meditation teacher and senior manager with the Community Engagement Department at the Parkinson's Foundation. She described what mindfulness is, the different types of practices, and how practicing can help reframe periods of stress, while encouraging a sense of control. She also offers a short mindfulness practice, so you can join in during the podcast if you wish. How did you get going with people with Parkinson's disease?
Crista Ellis 2:21 Oh, the history is almost a decade old now. I've been working in the Parkinson's community my entire professional career, and it really started with clinical research for people with Parkinson's, and as I was developing my own mindful meditation and yoga practice, I started noticing how these tools that I was using to help navigate my own life would be extremely beneficial for the community that I was serving. In the wake of Covid 19, I found an opportunity to pitch a mindfulness program to the Parkinson's Foundation, and we've been mindfully connecting ever since,
Dan Keller 3:03 I guess, just to set the stage for our listeners, what is mindfulness? And then why, especially, would it be helpful in Parkinson's?
Crista Ellis 3:13 Oh, that's such a good question, Dan. So mindfulness is this abstract idea that sounds really simple when you define it, but it really is a practice that that can feel very complicated and very challenging. So, as part of a definition, mindfulness is the intentional act of paying attention on purpose to the present moment, and when I say that, I mean listening to the sounds that are around you, the sensations on your skin, the way that you're breathing, recognizing what thoughts might be in your mind. So perhaps now saying that out loud, it doesn't sound so simple, but in a world that you know is constantly pulling us towards distractions and worries, and trying to fill every moment of our time with some kind of stimuli, some kind of activation or activity. Mindfulness can really be a game changer, and giving us a sense of calm and ease in the flow of day-to-day life. Is
Dan Keller 4:16 it also to really have no distraction, no impinging things on you. I know if you walk through a forest and you just stop after about 30 seconds, birds start chirping and you hear wind rustling through trees. So, is it a way to escape from daily grind?
Crista Ellis 4:41 I like how you, I appreciate, I admire the word that you used. Escape, mindfulness is not necessarily escaping or trying to numb out the realities of life. It's really being fully present with it all. I love the example that you gave, Dan, of stopping a. You're walking and taking a moment to hear the wind in the trees, to listen to the birds start chirping, and for people with Parkinson's specifically, mindfulness, this sense of paying attention on purpose in the present moment really supports anyone's stress management, but especially for people with Parkinson's, it can help us enhance our focus. It can improve movement, so if walking through the woods, if walking on sidewalk, or riding a bike is something that we want to do, doing it mindfully can give us more of a safety net around the activity that we're choosing, because we have greater body awareness. So, coming back to the word escape that you shared, it's not necessarily trying to rule out the noise of the world, but becoming intimately aware of it and not allowing it to consume the thought that internal narrative, you know, as we sit here, we're both having our own discussion in our minds alone by ourselves, and when we pay attention to that narrative, we learn to kind of not grip onto those negative thought patterns so much. There's this - I'm using this hand gesture of pulling my fingers into a tight grip, and when I start to feel that mindful awareness come in, my fingers start to loosen, and that grip starts to get a little bit softer, so using that sense of mindfulness allows us to be aware of the noise of the world, while intimately attuned to the internal noise that happens in our bodies and in our minds. Really beneficial for people with Parkinson's.
Dan Keller 6:39 Are there different ways to practice mindfulness.
Crista Ellis 6:43 Oh my gosh, there's so many ways. I was digging a hole earlier today in frozen ground, and I started noticing my mind, my thought patterns going, my gosh, this is hard. I can't believe I'm digging dirt in the middle of winter, and and then I paused and took a moment, and I was like, wait a minute, this is beautiful. I am digging dirt. Look, how beautiful this dirt is here. So, that is a mindful pause. Is one of the ways that I really love to start a mindfulness practice. When we think about the significance of mindfulness, there's so many ways to practice it. You could do formal meditation, you know, you think about sitting on the ground or in your easy chair and focusing on your breath, or tuning into someone who's guiding you through a practice. There's body scans, which so many research articles have published to be beneficial for people with Parkinson's. So, body scans is really this slowly tuning into each part of your body, noticing sensations, and trying not to change or shift these sensations with judgment, or noticing that tremor, and wishing it to be away, but really being attuned to each part of your body. There's mindful movement, gentle yoga, tai chi, walking mindfully. So, coming back to that example that you shared, Diana, walking through the forest, you know, really feeling your feet on the ground. What does it feel like to feel your feet, as Thich Nhat Hanh says, "Kiss the earth, and really paying attention how your body feels when you're moving it mindfully. Something really simple to do that is a mindfulness practice is gratitude, so reflecting on what you're grateful for can shift your perspective. And for those listening, I invite you to think of one, two, maybe three things that you're truly grateful for right now in this moment. And mindful listening is a great way to practice some form of mindfulness, so putting the phone away, turning the TV off, and listening to this podcast with your full presence, listening with this exquisite skill of the ears, really listening to the words and the sounds that you hear. Those are just a few examples of how you can practice mindfulness throughout the day.
Dan Keller 8:59 We all have negative fixations, something we have to do, an appointment pressure here or there, an interpersonal relationship, aches and pains. Is there a way to use mindfulness to reframe negative fixations?
Crista Ellis 9:16 Yeah, this is something that is really profound in those of us who are living with Parkinson's disease, this negative thinking, these thought patterns that seem to really attach to use a word here, rumination, that the mind gets so fixated on a particular pattern of thinking, a particular thing that you said that you wish had changed, or a different trajectory that you wish life had gone, and just really fixating on this negative thought pattern, and getting stuck, and mindfulness helps us break free of that negative thinking by increasing our awareness of. Of these thoughts, so the first step is noticing that's a negative thought. It's called thought work, and using mindfulness as a tool to reframe it. So, again, that first step is being mindfully aware of when you're noticing that you're having a negative thought. The first step is awareness. Don't fight it, don't try to judge it, just notice that thought is here, it doesn't make me feel good. And a good question to ask is, is it true? Is this thought true? And the second step would be trying to reframe that mindset, so ask yourself again, is this thought true? What's another way to look at this? For example, instead of fixating on what you can't do, and this seems to be a common theme in our community of those living with Parkinson's. What you can't do, focus on what you can do. The other day I was at the grocery store, and there was a spot available close. It's very cold here where I am. There's a spot very close to the door, and I decided, you know what, I can walk, I can walk. I parked far out into the grocery store because I can, and so thinking of this as an example in your thoughts, instead of succeeding on what you can't do, focus on what you can do. And another step that can help us reframe these negative thought patterns is practicing compassion using affirmations like I am doing the best I can, or I have tools to support me, saying these things out loud while looking at yourself in the mirror, it can be hard looking at ourselves in the mirror, but say something like I am doing the best I can, I have tools to support me and using these three steps, first awareness, acknowledging the negative thought, reframing, and then using positive self-talk over time. These small shifts can lead to big changes, and how the thinking mind really starts to shift the way we move in our worlds day to day,
Dan Keller 12:02 does it help to realize what you can change and what you can't change? Say you have a negative thought, oh, I never should have said that to so and so. Well, you already said it, you can't take it back. I mean, you could apologize, you could do a good deed for them, but you really can't take back what you said, so does it help to recognize what you can't change?
Crista Ellis 12:27 Oh, absolutely, Dan, that is such a good follow-up question. You're talking now about another mindfulness practice called acceptance, accepting that which we cannot change and being empowered by the things that we can. It also gives you a lot of energy, you know. Think about how much energy and time and effort you put into thinking about, I shouldn't have said that, I shouldn't have done this. All these, these shoulds. There's this popular phrase going around right now. It goes something like, don't should on yourself when you think of not shoulding. Let's not should on ourselves. Okay, so the thing was said, the thing was done. What can I do now? And I really appreciate you bringing up that idea of acceptance. I said the thing that I said, what can I do now? What's next? What can I do? This is really empowering for us, accepting that which has been already done, and giving us an opportunity to see what can be done still, so thanks for that, Dan.
Dan Keller 13:27 What do you say you try to lead our listeners through a short awareness practice or mindfulness? Is that possible in a couple of minutes?
Crista Ellis 13:38 Oh my gosh, yes, let's try and do it in like three ish minutes, just to show everyone how practical a simple mindful pause can be in our day to day. You ready, Dan?
Dan Keller 13:51 Yep.
Crista Ellis 13:53 All right, so find a comfortable seat, can lie down if you prefer, just shift and shimmy anything that might need to be shaken, and if you're driving, keep your eyes on the road. If you're not driving and you're in a comfortable place of stillness, an invitation to close your eyes or lower your gaze, looking down at your toes or the ground. And let's start with three deep breaths, so we'll breathe together. Take a breath in through your nose and then out through your mouth. Good. Let's do two more together. Breathe in and breathe out, and then this third one will pause in between the inhale and the exhale, breathe in through your nose, pause at the top of your inhale, and then slowly breathe out through your mouth. And softening your shoulders and feeling the tiny little muscles of your face start to relax, you can bring your attention to your body, notice how your feet feel on the ground, or how your body feels against the chair. Just notice how your body feels, and now shift your focus to your breath. How are you breathing, your natural rhythm, not trying to change it, just noticing how you breathe in, how you breathe out, and and I'll ask, where do you feel your breath the most? Is it in your chest? Maybe you notice your breath is deep into the belly, or perhaps for you, you are exquisitely aware of the breath through your nose, and keep breathing, and if your mind wanders, that's okay, and simply notice that your mind has trailed off, and then bring your focus back to your breath, breathing in, breathing out, and and take one more deep breath in and a slow breath out, and when you're ready, you can twinkle your eyelids open, maybe roll the shoulders around, twirl your fingers, lick your lips, take a swallow, and that is a mindful pause, less than three minutes of recalibrating the breath and becoming deeply aware of your body and your breath in just a few moments. How are you feeling, Dan?
Dan Keller 17:45 Good,
Crista Ellis 17:49 good,
Dan Keller 17:53 relaxed. Yeah, anything? Did
Crista Ellis 18:01 you notice anything, Dan?
Dan Keller 18:04 Well, as you suggested, focusing on different parts of your body, feeling gravity on my couch. I'm sitting on a couch, certainly the breath. It's like when she's gonna let me exhale, you know, your chest is expanded, you know, things like that, not uncomfortable, just aware. Yeah, the sensory input just tells you, yep, there's all these parts seem to be in sync, working.
Crista Ellis 18:43 Yeah, yeah, yeah. Well, good. I'm happy to offer that moment of pause for you.
Dan Keller 18:50 Are there more mindfulness programs people can avail themselves of?
Crista Ellis 18:57 Great question. If you feel that practicing mindfulness would support you, and you want some accountability for showing up in community. The Parkinson's Foundation offers Mindfulness Mondays just about every Monday of the week, and I encourage you to check it out. It's designed for our community of people navigating and impacted by Parkinson's, and it's really a special community, and it's open to everyone, whether it's your first time practicing mindfulness or you're a seasoned practitioner. Mindfulness Mondays is for everyone in our community, so come breathe with me
Dan Keller 19:42 to take it it's at parkinson.org/something's
Crista Ellis 19:47 yeah, parkinson.org/pd's Health, and you'll scroll and find the Mindfulness Mondays link. You can sign up for all the sessions each Monday, or you can sign up just for the ones that feel. Particularly of interest to you, there's different themes, different sort of modalities, different techniques that we practice every Monday. So, if one week you're not really into sort of the visualization or the imagery meditation, the next week we'll probably, I don't know, practice mantra or affirmations or loving kindness. There's all kinds of different ones that we propose and practice together, because, like, you people resonate with different voices, different styles, different ways of practicing what feels easy and supportive to them. So, if one week it doesn't match, yeah, we'll come back and see if the next one does. So, parkinson.org/pd's Health,
Dan Keller 20:41 so any particular take-home message in a nutshell.
Crista Ellis 20:47 Mindfulness is a journey, that's why they call it a practice, not something we master. It's not a destination, and mindfulness, it's about showing up for yourself one moment at a time, and if we can do that in this sacred life that we're living with Parkinson's, now would be the time. So, thank you for sharing this opportunity with me, Dan. And I look forward to seeing everyone on Mindfulness Mondays and continuing this journey together, one moment at a time,
Dan Keller 21:21 very good. I appreciate it. Thanks. The Parkinson's Foundation hosts a live Mindfulness Monday webinar each week as part of PD Health at Home. Just go to parkinson.org/pd Health to find a session that interests you and continue your mindfulness journey. If you prefer to practice on your own, we also have recorded videos on our YouTube channel at parkinson.org/youtube's or feel free to use the internet to find other mindfulness programs near you, whether virtual or in person. If you'd like to leave feedback on this episode or let us know what other topics you'd like us to cover, visit parkinson.org/feedback's Be sure to subscribe and rate us 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 month. Till next time, for more information and resources, visit parkinson.org's or call our toll-free helpline at one 804 pd info, that's 1-800-473-4636 Thank you for listening.
