ACT Like You Mean It: How Acceptance & Commitment Therapy Can Transform Life with Parkinson's Disease

What if the key to living better with Parkinson's disease wasn't about eliminating every difficult thought or feeling — but changing your relationship with them? In this episode of Live Parkinson's: Live an Exceptional Life, we break down Acceptance and Commitment Therapy (ACT) — one of the most evidence-backed psychological tools available for people living with Parkinson's — and show you exactly how to put it to work in your daily life.

ACT isn't about giving up. It's about stopping the exhausting battle against your own mind so you can redirect that energy toward what actually matters: living fully, moving boldly, and connecting deeply — even with Parkinson's.

In this episode, you'll discover:

• 🧠 What ACT therapy is — and how it differs from traditional CBT (hint: it's not about "thinking positive")
• 🔑 All 6 core ACT principles (the Hexaflex) explained in plain language with real Parkinson's examples: 
  • Acceptance — Stop fighting your inner experience and reclaim your energy
  • Cognitive Defusion — Unhook from fear, anxiety, and catastrophic thinking
  • Present-Moment Awareness — How mindfulness helps break the anxiety spiral
  • Self-as-Context — Why you are so much more than your diagnosis
  • Values Clarification — Discover what truly drives you and use it as your compass
  • Committed Action — How to keep showing up for your life, even on the hardest days
• ✅ 4 actionable "Try This Today" techniques you can start using immediately — no therapist required.

 Whether you're newly diagnosed, years into your Parkinson's journey, or a care partner supporting someone you love, this episode delivers powerful tools to help you build psychological flexibility — the research-proven ability to keep living a rich, meaningful life in the face of a progressive condition. 

🌐 Want more research-backed strategies for living exceptionally with Parkinson's? Visit liveparkinsons.com and subscribe to the free monthly newsletter

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Transcript

Welcome And The Acceptance Problem

SPEAKER_00 0:09

Hello, and welcome to Live Parkinson's Live an Exceptional Life. I'm your host, Chris Custombauter, and I've been living an exceptional life with Parkinson's for the past 15 years. And this podcast is where we're going to take the science, the strategies, and yes, even the hard stuff about Parkinson's disease, and we turn it into fuel. Fuel to move better, think better, connect better, and just flat out live better. So if you're brand new here, welcome to the family. And if you're a returning listener, you're absolute legends, and thank you for being here. All right, now today's topic, we're talking about act, acceptance and commitment therapy. And I want to be up front with you right away. Now, when I first heard the word acceptance in the context of Parkinson, my gut reaction was acceptance of what exactly? I'm not going down without a fight. I'm not giving in until the very end. I think a lot of us feel that way. And that's part of the fighting spirit that we have. That's actually part of who we are. But here's what ACT taught me. There's a really important difference between fighting Parkinsons and fighting yourself. Now, one of those battles you can win, the other, well, it's exhausting, it's futile, and it's actually stealing your energy away from the life that you want to live. So today we're going to break down exactly what ACT is, look at the clinical research that supports it for people living with Parkinson's, and then because on this show we always give you something that you can use, I'm going to walk you through four specific action steps that you can start today. Alright, so let's get into it. Okay, first things first, what exactly is acceptance and commitment therapy? Well, ACT, which therapists actually pronounce in the single word, ACT, and not the initials ACT, was developed in the late 1980s by a psychologist named Stephen Hayes at the University of Nevada. Hayes actually developed ACT partly to help himself deal with his own panic disorder. So right out of the gate, this isn't some ivory tower theory. This is a guy who was in the trenches with his own mental health who built something that worked. Now, ACT is what they called third wave cognitive behavioral therapy. Now I know that sounds fancy, so let's break it down. Old school therapy, or the first wave, was all about changing behaviors. Then along came the second wave, and that's traditional cognitive behavioral therapy. And that was about identifying and changing your negative thoughts. So if you were thinking, I'm worthless, CBT says, let's challenge that thought. Is it really true that you're worthless? No. And then you you reinforce it with a positive thought. ACT takes the different approach entirely. Act says, you know what? You're going to have negative thoughts, you're going to feel anxious, you're going to feel grief, frustration, fear. That's just part of being human. And it's especially part of living with a progressive neurological condition. So instead of trying to eliminate the thoughts and feelings, ACT teaches you to change your relationship with them. Stop letting them run the show. Now the goal of ACT isn't a happy mind. The goal is a flexible mind. What researchers call psychological flexibility. That's the ability to present and to hold your difficult thoughts and feelings lightly, and to keep moving in the direction of what matters most to you. And here's where it gets really relevant to our community. Parkinson's doesn't just give us the option of a symptom-free life, the tremor, the stiffness, the off periods, the anxiety, the sleep issues, because those are real. ACT doesn't pretend that they're not. But ACT gives us a framework to stop letting those realities shrink our world. That's the promise. Now let's look at how. ACT is built on six core principles, sometimes called the hexaflex, because they're arranged on a hexagon diagram. Now I'm a fan of the visual, but don't worry, you don't need to see it to understand it. So I'm going to walk you through each one and make it immediately real life for those of you living with Parkinson's. Now here are the six key principles: acceptance, cognitive diffusion, present moment awareness, self as context, values, and committed action. Each one builds on the others, and together they create what researchers define as psychological flexibility, not the give up and wave the white flag kind of acceptance. Now I can't stress this enough. In act, acceptance means allowing your inner experiences, your thoughts, your feelings, sensations, memories, to exist without fighting them or letting them dominate your behavior. So think about this. How much energy do you spend fighting the thought, I hate that my hands shake? Or I'm scared about what's coming? I hear that one a lot. Or I'm angry that this is my life. Every time you go to war with those thoughts, you're burning energy. And those thoughts, they don't leave. They just come back louder. So Axe says, What if you let that thought be there like a radio in the background without letting it be the DJ of your day? Now for people with Parkinson's, acceptance is a radical act of self-compassion. It means acknowledging our reality without surrendering to it. Okay, that's principle number one. That was acceptance. Principle number two, cognitive diffusion. Okay, so here's one of my favorite concepts in all of Act. The name sounds intimidating, but I promise it's not. Cognitive diffusion is about unhooking from your thoughts. When we're fused with a thought, we treat it as an absolute truth. The thought, I'm a burden to my family, shows up, then suddenly you're a burden. That thought is you, it's real, and it controls you. And how many of you have felt like that? I'm I know that we all probably have. Diffusion teaches you to step back and see the thought for what it is. It's just a bunch of words your brain produced. It's not a fact, it's not a command, and it's not a thought. Now a classic act diffusion technique, instead of saying, I'm a burden to my family, you say, I notice I'm having that thought that I'm a burden to my family. Sounds simple, it's actually powerful. You created a little bit of distance, a little breathing room between you and that thought. So you're the observer, you're not the victim. For Parkinson's, this is gold because our brains can become world-class generators of catastrophic thoughts. My balance is getting worse. What happens when I can't walk? What happens when I can't take care of myself? Diffusion makes those thoughts disappear. It means that you can have the thought and still choose to get up, lace your shoes, and go to your boxing class anyway. Alright, principle number three, present moment awareness. You've heard of mindfulness. Now, this is mindfulness act style. Present moment awareness is about bringing your full, non-judgmental attention to whatever is happening right now. Not the doctor's appointment six months from now, not the worst case scenario you've played out in your head 47 times right now. And look, I get it. Living with a progressive condition means the future is always on your mind. That's not a weakness, that's a survival instinct. But when we spend most of our time living in that future anxiety or that past grief, we miss the actual life that's happening right in front of us. ACT teaches that the present moment is the only place where meaningful action is possible. We can't change our future and we can't change our past, but we can enjoy the moment that we're living in now. It's the only place where you can connect, laugh, love, move, and live. Alright, principle number four, self as context. Alright, now this one gets a little bit philosophical, but I love it. So stay with me. Self as a context is the idea that you are not your thoughts, you're not your feelings, or you're not even your diagnosis. You are the observer of all of those things. Act therapists use this metaphor. So imagine the sky. The sky is always there, storms come through, dark clouds, lightning, thunder, heavy rain, but the sky itself, it's never damaged by the storm. It holds the storm, and the storm always passes. So you are the sky. Parkinson's is a storm. A relentless, frustrating, and sometimes terrifying storm, but you, the person, the consciousness, the you who has loved, struggled, laughed, and lived, you're bigger than your diagnosis. So this context helps people with PD maintain a stable sense of identity, even as symptoms change. You're not your tremor, you're not your off period, you're a whole person that never changes. All right, principle number five is values. Now here's where act gets really exciting because it shifts everything from what's wrong with your life to what matters in your life. And let me say that again. It shifts everything from what's wrong with your life to what matters in your life. Values in Act are different from goals. Goals can be achieved or not achieved. Values are directions, ongoing guides for how you want to live. Things like being a present and loving parent, being someone who faces hard things with courage, being part of your community, staying curious, and my favorite, having fun. Your values don't go away when Parkinson shows up. In fact, if you clarify your values when life gets hard, it's one of the most powerful things that you can do, because it gives you a compass when everything else feels uncertain. Now, a person whose value is being a loving grandparent can express that value even on a hard symptom day. Maybe it's not playing basketball with the grandkids, but it's sitting on the couch, listening to their stories, being fully present. Maybe it's having them help you cook a meal or you're sitting in, you're playing a game or doing coloring. Same value, different expression. Act asks, what do you want your life to be about? Not what do you want your Parkinson's to look like, what do you want your life to look like? That question is life-changing. So you're turning it from focusing on Parkinson's to taking control and saying, what do I want my life to look like? And then principle number six is committed action. And this is where it all comes together. All the acceptance, all the diffusion, all the mindfulness. Act isn't some passive shift. Sit in a chair and contemplate your naval philosophy. It's about doing. Now committed action means taking concrete steps towards your values, even when it's uncomfortable. Even when your anxiety says, Don't. Even when your tremor is more visible today, and even when that voice in your head says, What's the point? Committed action is going to your Rocksteady boxing class when you really don't want to. It's calling your friend, even though you're embarrassed about how your voice sounds. It's signing up for the choir, even though your Parkinson's makes it harder. It's doing the life that you want, aligned and with who you are, despite the discomfort. It's being worried about something and doing it anyway, because that's what you want to do. You're not letting Parkinson's hold you back. This principle is where ACT becomes a complete game change. Because at the end of the day, living exceptionally with Parkinson's isn't just about managing symptoms. It's about choosing to show up for your values, your community, your life over and over again. Alright, now the research. Alright, let's talk science. Because I know many of you want to bring this to your care team, and for that you need more than a podcast host who finds this inspiring. You need receipts. So here are the receipts. Alright, first some context. ACT has now been evaluated in over 900 randomized controlled trials globally, covering everything from anxiety and depression to chronic pain and serious physical illness. Now, a major review published in the journal Behavior Therapy found strong evidence for ACTES effectiveness across depression, anxiety disorders, chronic pain, substance use, and importantly, for our community, coping with chronic health conditions. Now the reviews consistently show that ACE achieves its results by increasing what researchers call psychological flexibility. So in other words, the therapy works the way it's supposed to work. Now, specifically for Parkinson's disease, the research is younger, but it's growing fast and what's there is generally exciting. A notable pilot randomized controlled trial by Gillian and colleagues found significant improvements in psychological quality of life for people with Parkinson's who received ACT compared to those who receiving treatment as usual. That's quality of life. Not just mood, but the whole picture of how people are experiencing their lives. Now here's one that really grabbed my attention. There was a 2024 study published in BMJ Neurology Open, authored by GWAC and Park, designed a prospective multi-center randomized controlled trial specifically to test ACT's impact on fear of falling and physical activity in people with Parkinson's. Now this is a big deal because fear of falling is one of the most debilitating non-motor symptoms of PD. People stop moving because they're afraid of falling. And then the inactivity makes the Parkinson's worse. So it's just a brutal cycle. The ACT intervention includes specific work on cognitive diffusion around catastrophic falling-related thoughts, helping participants notice and separate from thoughts like if I fall, everything will fall apart. Early evidence from the trial design and literature review strongly supports ACT as a non-pharmacological approach for breaking this exact cycle. And then there's this. So here are four specific things that you can do starting today to begin bringing act printables into your daily life with Parkinson's. Alright, action step number one, the leaves on a stream exercise. This deals with cognitive diffusion. Alright, so the next time that you notice a difficult thought about Parkinson's, a fear, a frustration, or a what if thought, because they tend to spiral out of control, try this classic ACK diffusion exercise. So close your eyes. Imagine you're sitting beside a gently flowing stream. Now imagine placing each thought on a leaf and watching it float away downstream. You're not chasing the leaves, you're not jumping in after them, you're just sitting on the bank and watching them go. This exercise physically helps your brain create distance from the thought. It's one of the most used techniques and act practice, and you can do it in five minutes, anywhere, anytime. Try it tonight before bed if your mind starts spinning. So the next time you think, what if I'm a burden to my family? Close your eyes, think that you're sitting beside a flowing stream, and put that thought on a leaf and just watch it go away. Alright, action step number two. Write your personal values list. So grab a notebook or your phone and answer this question. What kind of person do I want to be? What matters most to me in my life? Don't write goals. Don't write I want to not have Parkinson's. Write values. Things like courage. I want to spend time with my family. I want to keep a sense of humor. I want to be creative and learn new things. I want to be involved in community service, faith, friendship, and adventure. So pick your top three. Put them somewhere you'll see them every morning. And then ask yourself each day, even on the hard days, what's one small thing I can do today that expresses one of these values? That's committed action. That's act in real life. Action step number three. I notice I'm having the thought that, so we need to reframe that. So I feel like I'm having that thought that I'm gonna fall or that people are looking at me because I have a tremor. So for one week, practice adding this phrase in front of your most persistent negative thoughts about Parkinson's. Instead of I'm getting worse, say, I notice I'm having the thought that I'm getting worse. Instead of I'm a burden, say, I notice I'm having the thought that I'm a burden. So you're the observer rather than letting your brain think that that's actually a true and fact statement. So this isn't denial. You're saying that the thought isn't there. You're just creating a tiny bit of space, the observer and the thought, instead of the thought being you. So do this consistently and you will notice a real shift in how much power those thoughts have over your day. And then action step number four, one values-based commitment this week. So pick one thing this week that is aligned with your values and commit to doing it, regardless of how you feel when the day arrives. So if it's community service and you told somebody you'd be there, but you wake up and you say, Oh, I don't feel like it today. Just do it anyway. Maybe it's going to your exercise class, even though you're anxious about how your symptoms look. Might be calling a friend you've been avoiding. Maybe it's signing up for that class or joining that support group, trying a new restaurant. Say yes to that outing. Just do it. Write it down, tell someone about it, and when the day comes and your brain says, maybe I shouldn't, you go anyway, because that's committed action. And that's how you live an exceptional life with Parkinson's. All right, now let's bring it on home. Act is not magic. It's not going to stop the progression of Parkinson's or make the tremors disappear. But what it can do, and what the research is increasingly confirming, is change your relationship with the disease. It can help you stop wasting energy fighting your own thoughts, and redirect that energy toward things that make your life rich and meaningful. The six principles, acceptance, cognitive diffusion, present moment awareness, self as context, values, and committed action aren't just therapy buzzwords. They're a practical toolkit for building what researchers call psychological flexibility. And psychological flexibility at its core is the ability to keep. Choosing the life that you want even when life doesn't look the way you planned. Now, you know what I love most about Act for Our Community? It starts with the assumption that you are already capable. It doesn't see you as broken, it doesn't try to fix you. It says you're human. You're gonna have painful thoughts, but you're also powerful enough to hold those thoughts lightly and keep moving forward. That's live Parkinson's Creed. That's the exceptional life. That's you. Now, if you want to explore ACT further, I encourage you to look up a therapist trained in ACT. The Association for Contextual Behavioral Science at Contextualscience.org has a therapist finder. And you can look for ACT-based apps and workbooks. Now, if you found today's episode hit home for you, then share it. Text it to a friend in your Parkinson's community. Post it in your support group. Because we're all in this together, and the more tools we put in each other's hands, the better we all live. And hey, try at least one of these four actions this week. Let me know how it goes, and you can find me at online at liveparkinsons.com and I'd love to hear from you. Until next time, keep moving, keep connecting, and keep living exceptionally. Thanks again for listening, and I hope to see you soon.