Understanding Anxiety in Parkinson’s: Brain Chemistry and Real Solutions

Anxiety affects nearly 40% of people living with Parkinson’s, but most don’t realize why it happens — or what they can do to manage it. In this episode, we break down the real science behind Parkinson’s‑related anxiety, including how changes in dopamine, serotonin, and norepinephrine reshape the brain’s stress response.

You’ll learn the different types of anxiety common in Parkinson’s — from OFF‑period anxiety to rumination and panic — and discover research‑supported strategies that truly help. We explore the role of exercise, CBT, medication timing, and practical daily tools that calm the nervous system and restore confidence.

This episode is designed to help you understand that anxiety in Parkinson’s is not a personal failing — it’s a neurological symptom, and there are effective ways to take back control.

⭐ What You’ll Learn

• Why anxiety is so common in Parkinson’s
• How dopamine, serotonin, and norepinephrine shape emotional regulation
• The difference between generalized anxiety, OFF‑period anxiety, panic, and rumination
• How exercise changes brain chemistry and reduces anxiety
• Why CBT is one of the most effective non‑medication treatments
• Practical, actionable steps you can start today

Important Disclaimer

If you are experiencing anxiety that is impacting your daily life, please talk with your healthcare provider. They can help you identify the right tools, treatments, and support to manage your anxiety safely and effectively.

🔗 Call to Action

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Chapters

• 0:10 Welcome And Mission
• 0:38 Naming The Problem: Anxiety
• 2:01 Types Of Anxiety In Parkinson's
• 5:04 Recognizing Symptoms And Signals
• 5:58 Brain Chemistry Made Simple
• 10:52 Serotonin, Norepinephrine, And Mood
• 14:58 Limbic System, Off Periods, And Gut
• 16:46 Action Steps: Medication And CBT
• 19:21 Exercise, Breathing, And Connection
• 22:23 Sleep, Gut Support, And Routine
• 24:33 Real Stories: Chris And Mark

Transcript

SPEAKER_00: 0:10

Hello, and welcome to Live Parkinson's, Live an Exceptional Life. I'm your host, Chris Custom Butter, and I've been living an exceptional life with Parkinson's for the past 15 years. The mission of this podcast is to help as many people as possible living with Parkinson's to lead a great quality of life. Now today we're diving into a topic that so many people with Parkinson's whisper about, worry about, or quietly battle every single day. But we really get answers. What am I talking about? Anxiety. And it's not just I'm stressed about my to-do list anxiety. I'm talking about the kind that shows up out of nowhere, hits you like a wave, or creeps in during off periods. In social situations where you feel like you have to escape from the situation, or even first thing in the morning before your meds kick in. If you've ever thought, why am I anxious? This isn't me. You're in the right place. Because today we're breaking down the brain chemistry behind Parkinson's anxiety, but in a way that's simple, because I am a simple person, helpful, and backed by real research. And yes, probably the most important piece of all, what you can actually do with this information to help you with anxiety. So let's talk briefly about what we'll be exploring in this episode. We'll lead it off talking about what anxiety looks like in Parkinson's. Then we'll talk about the brain chemistry behind Parkinson's anxiety, so you can dazzle your friends with brilliance and knowledge. Then we dive into real life examples, and then it's on to the key to help us in our daily lives, and we'll provide some action steps to help you reduce your anxiety. Then we'll finish up with a few personal stories about dealing with anxiety, including my own personal experience. So, if you're ready, let's take off the floaties and dive in. So, first things first, you are not alone and struggling with anxiety. In fact, anxiety is extremely common in people living with Parkinson's. According to the Parkinson's Foundation, in their fact sheet on managing anxiety in Parkinson's, about 40% of people with Parkinson's experience anxiety. And other studies have shown up to 53%. Still, four in every 10 people with Parkinson's experience anxiety. Now let's look at some of the types of anxiety commonly seen in Parkinson's. And this is based on the Parkinson's Foundation description and clinical patterns. And we'll start off with generalized anxiety. And generalized anxiety is a constant status of worry, unease, or dread. It often shows up as an ongoing fear, irritability, restlessness, or difficulty concentrating. Now it can appear at any stage of Parkinson's, sometimes even before a diagnosis. Next up is panic attacks or sudden terror. And I'll raise my hand on this one because I used to get panic attacks and they really affect your life. These are episodes of intense fear that can come on quickly. Physical symptoms may include racing heart, dizziness, nausea, sweating, and internal shaking. Now these can occur without a clear trigger. And then sometimes people even go to the emergency room because they think they're having a heart attack. Alright, next is social anxiety, and that's fear of social situations or being around others. It's often tied to motor symptoms like tremor, freezing, facial masking, voice changes, and they make people feel self-conscious. Now the bad part about social anxiety is that it can often lead to avoidance and social isolation, which worsens anxiety. And then we have off-related anxiety. And this is anxiety that spikes when medication wears off and dopamine levels drop. It can appear suddenly and may be accompanied by worsening motor symptoms. Now, this is one of the most unique and under-recognized forms of PD-related anxiety. Health-related anticipatory anxiety, which is next, is worry about the future, disease progression, independence, or symptom unpredictability. Now it's often tied to uncertainty, and it can also show up around medical appointments or when new symptoms appear. Fear of the unknown is also quite common. Sleep-related anxiety, this is anxiety linked to insomnia, fragmented sleep, where you're waking up or having a hard time getting back to sleep, or rapid eye movement sleep disturbances. Now, lack of sleep or poor sleep is going to amplify your anxiety. And I know from a personal point of view, when I don't sleep well, I feel more anxious throughout the day. Anxiety can worsen sleep, causing a vicious cycle. Alright, so now that we know what the different types of anxiety are that we can experience, let's look at some of the common signs or symptoms of anxiety and see if you have experienced any of these personally. Now here's our list of some of the bothersome signs of anxiety. You have ongoing fear or worry, you feel on edge, or you can be overly alert as well, a sense of doom or dread, irritability or restlessness, unwanted repetitive thoughts, you keep thinking about the same thing worrying over and over again, sudden panic or terror, difficulty sleeping, trouble focusing, avoiding situations and places, and physical symptoms like fatigue, racing heart, dizziness or nausea, excessive sweating, and internal shaking or buzzing. Now, if any of these symptoms sound familiar, you're not imagining it, and you're definitely not alone. I've experienced many of these myself. Now, later on in the podcast, we'll talk about how you can manage or overcome these symptoms. All right, now that we understand what anxiety is, the types of anxiety that we can experience, and how to notice the symptoms, let's get a little science nerdy and discuss the brain chemistry behind Parkinson's anxiety. Now, I promised to make this simple. I don't want people's eyes to start rolling in the back of their head, and the next thing you know, they're passing out and hitting their head on the table. All right, so let's lead it off with something we're all familiar with, and that's dopamine. Now, dopamine is the stabilizer. Now, what do I mean by that? Well, we all know that dopamine is involved in our movement. That's why with Parkinson's, we are given medications to help replace dopamine loss or mimic the effects of dopamine to help us with our motor symptoms. But dopamine also plays a huge role in dopamine regulation. There was a 2021 article in current psychiatric reports that explains that dopamine loss disrupts brain circuits that help us stay calm and steady. So when dopamine dips, especially in off periods, anxiety can spike. Alright, next up is serotonin and norepinephrine, which are called the mood regulators. Parkinson's doesn't just affect dopamine. A 2020 study in brain communications mapped how Parkinson's also disrupt serotonin and norepinephrine pathways, the chemicals responsible for mood, stress response, and emotional resilience. So when these systems are off balance, your brain's going to become more reactive to stress. So let's look at each one's role in anxiety and let's start with serotonin. And we'll call that the mood stabilizer system. Serotonin is going to help to regulate your mood, calmness, emotional balance, sleep, and resilience to stress. When serotonin signaling is low or disrupted, anxiety becomes more likely. So what's serotonin's role in anxiety, you ask? Well, low serotonin is strongly linked to generalized anxiety, panic, and rumination. And rumination is the mental loop where the mind gets stuck replaying the same worries, fears, or thoughts over and over again. So this is why selective serotonin uptake reinhibitors, or SSRIs, are considered first-line treatments for anxiety, according to the American Parkinson's Disease Association in their article, Treating Psychiatric Symptoms in Patients with Parkinson's Disease. So, how is serotonin affected in Parkinson's? Well, Parkinson's doesn't only reduce dopamine, it also disrupts serotonin pathways. Serotonin-producing neurons degenerate, contributing to anxiety, depression, sleep problems, and emotional instability. And again, SSIs are commonly used in PD, but research shows that they may sometimes worsen apathy in some individuals because serotonin can suppress dopamine activity in certain circuits, according to the article Parkinson's and Motivation, how SSRIs may affect apathy levels. And that was at the University of Florida at the Norman Fixel Institute for Neurological Diseases. All right, now let's look at norepinephrine's rule. Norepinephrine is the alertness and stress response system. It's going to regulate your energy, your focus, stress response, blood pressure, and the fight or flight system. So, how is norepinephrine involved in anxiety? Too little uh norepinephrine can cause fatigue, low motivation, and brain fog. And too much can trigger hyporausal, causing panic, racks, and physical tension. Many anxiety symptoms like heart pounding, sweating, restlessness are driven by norepinephrine. So, what is norepinephrine's role in Parkinson's? Parkinson's damages the locus cerillus, the brain's main norepinephrine center. This can lead to anxiety and panic episodes, orthostatic dizziness, sleep disturbances, and fatigue, and also low motivation. So I hope you're starting to see that anxiety in Parkinson's isn't just psychological, it's biochemical and should therefore not be considered a personal weakness. Now another system involved in anxiety is the limbic system, which is our emotional control center. The limbic system is the part of the brain that processes fear and emotion, and it becomes more sensitive in Parkinson's. The brain communication study that I referred to earlier showed that degeneration in the emotional circuits can make everyday stress feel bigger and harder to regulate. Now, another contributor to anxiety is something many of us experience, and that's off periods, and they can also trigger anxiety. So if you've ever felt anxious right before your next dose of medication kicks in, then you're experiencing what researchers call off-related anxiety. Now there was a 2020 review in BJ Psych Advances, and they highlight that anxiety during off periods is one of the most common non-motor fluctuations in Parkinson's. So that anxiety that we feel during off periods, it's biology and not because we have a weak personality. Now finally, let's talk about the gut brain access. I've discussed this in other podcasts, but here's a fun fact or a fun twist, whatever you want to call it. Your gut is basically your second brain. The BJ Advances review also noted that gut dysfunction and microbiome changes in Parkinson's can amplify anxiety signals, the vagus nerve, which connects your gut and your brain and acts as the information highway. So, yes, it's true that your gut can literally make your brain feel anxious. All right, now let's switch gears from understanding anxiety to taking action. Because really, let's be honest, it's nice to understand why we get anxiety and that there isn't some kind of character flaw that we have, but it's more important to know how we can manage it and how can we help reduce the impact on our daily lives. So let's look at some of the research-based strategies that you can start using today. And let's lead it off with optimize your medication timing. So, what do I mean by this? You can start to track your anxiety along with your medication schedule. Many people can see improvements when off periods shrink. So bring these notes to your neurologist and show them your notes, and they can use this to potentially adjust your medication schedule so that reduces your off times and then therefore reduces your anxiety. If you visit LiveParkinsons.com, you can get a free medication and symptom tracker. Doing this is the easy thing, and it can be one of the most powerful tools that you have. All right, next up is one that I have personally done myself and I highly recommend it, and that's cognitive behavioral therapy, also known as CBT. Now, if you want more detailed information, I did do a podcast called Parkinson's and Anxiety, how cognitive behavioral therapy can take back control. And that was from April 3rd of 2024. Now, CBT is one of the most effective treatments for Parkinson's anxiety. All right, so what is it you're probably asking yourself? Well, cognitive behavioral therapy is a structured, skills-based therapy that helps people change unhelpful thought patterns and behaviors that fuel anxiety and depression. It teaches practical tools to break cycles of worry, avoidance, and fear, which are all common in Parkinson's. Now, according to the study Cognitive Behavior Therapy for Depression and Anxiety and Parkinson's, that was published in Sage Journals, they found that CBT is effective for reducing anxiety and depression for people with Parkinson's. Alright, so why does CBT work for people with Parkinson's? Well, as we discussed, Parkinson's affects dopamine, serotonin, and norepinephrine, the brain systems that regulate mood, stress, and emotional flexibility. Now, because of these changes, people with Parkinson's are more vulnerable to persistent worry, rumination, and again, that's where you keep thinking the same worrisome thoughts over and over again, panic, avoidance, negative predictions, and fear of symptoms. Or some people also have fear of the future. CBT directly targets these patterns and gives people the tools to regain control. So, what can CBT help with? Well, according to the clinical reviews and meta-analysis, CBT significantly reduces anxiety symptoms and PD. And that was from the study Cognitive Behavioral Therapy for Anxiety and Depressions in Parkinson's. And that was published in frontiers.org. Now, CBT improves coping, confidence, and day-to-day functioning in both in-person and telehealth CBT. They found them both to be effective, whether you did it in person or whether you worked with someone over the phone. So studies show that CBT helps people with Parkinson's feel calmer, more in control, and better equipped to handle daily challenges. And the nice thing is accessible to almost everyone. Alright, let's move on to our next action step to reduce anxiety. And it's one of my favorites, and hopefully it's yours too, and that's exercise. Now, believe it or not, exercise is one of the most powerful anxiety-reducing tools that we have. Not because it's motivational or inspirational, but because it's biological. Exercise boosts your brain chemistry that regulates anxiety. Parkinson's reduces dopamine, serotonin, and norepinephrine, the same chemicals that regulate our mood, stress, and emotional balance. Exercise is going to help increase all three of these, helping the brain's natural ability to calm the nervous system. Now, in the Yale Medicine article, can exercise help people with Parkinson's disease? Four things to know. They note that research shows that exercise can change brain plasticity, strengthen neural pathways, and improve how the brain handles stress. Exercise improves your mood and your quality of life. In fact, there was a large meta-analysis of randomized controlled trials found that exercise improves quality of life, symptom relief, balance, and gait speed. Okay, Chris, so how does that help with anxiety? Well, good question. Well, these improvements reduce the daily stress load that fuels anxiety. And then last but not least, exercise interrupts the anxiety cycle. Now, speaking from personal experience, anxiety creates avoidance, and avoidance increases anxiety. Exercise can break this cycle by activating the body, shifting your attention and focus away from worry and anxiety, reduce rumination, and create positive momentum. Even short bouts can interrupt anxious thinking patterns. Now, all these factors are why exercise is medicine for both the body and the mind. Alright, another step for you to consider is breathing in mindfulness. And you might think to yourself, well, how's that going to help? Well, slow breathing activates the parasympathetic nervous system, your body's natural calm down switch. So one of the things I like to do, and you can do it yourself, is try this simple breathing exercise. You want to inhale slowly for four seconds, hold for two, and exhale for four. Now, if you do that for a minute, you'll feel the shift in your body and your attitude. You can also close your eyes and breathe slowly in through the nose and slowly exhale through the mouth and focus on your breath. And if thoughts pop into your head, just acknowledge them, let them go, and continue focusing on your breath. I try to do this every day, and it really helps. It helps keep you calm and it helps keep anxiety at bay. Alright, moving on to you want to reduce isolation. Now, this is one of my four pillars that I live by, and it's one of the most important that I found, and that's social interaction. Social interaction literally calms the nervous system. So find a support group, a group fitness class, an online community, or find others with similar hobbies and interests. Just get together. Other options is you can meet a friend for coffee or lunch. We have a Parkinson's group that we meet once a month for breakfast. We share stories, we laugh, and we help each other with issues that we're experiencing. Now you don't have to do this alone. Find someone that's there to help you. Alright, next up is sleep hygiene. Poor sleep amplifies anxiety circuits. So try to find a consistent bedtime. Maybe do some light stretching before bed, take a warm shower. And this is one of the big ones that I try to reduce, and that's screen time. That's on your phone, tablet, computer, TV. Try to do that at least 30 minutes, but preferably an hour before bed, because the blue light's going to stimulate your brain to think that it's time to be awake. So all these little things can add up and help you reduce stress and sleep better. Now the next one may cause you to scratch your head and say, What are you talking about? And that is support your gut. Hydration, fiber, and probiotics can regulate your mood through the gut brain axis. Now remember, you want to always talk to your doctor before you add any supplements to ensure that they don't interfere with your current medications. And then finally, and then this one's very important. And that's create a calm daily routine. So take just five to ten minutes each morning, and that can help you stay calm and stabilize your nervous system. So try the breathing techniques I discussed. You can do some light stretching. One of the things I like to do is a gratitude journal. That can really help you. And one of my favorites for looking at what I'm grateful for in my life. And another option is to do a short walk. So try to be consistent with this and you'll notice a difference in how you start your day. It really will make a difference. All right, let's look at a couple real life examples. And I'll start with my own personal story. Now, when I was in my mid-30s, I began to experience panic attacks, and they seemed to start just out of the blue. My heart would beat faster, my hands would get sweaty, my breathing started to get shallow, and it really had a big effect on my life. And after experiencing these for six to nine months, I began noticing that I was starting to avoid people or places and limiting things that I thought were maybe triggering the panic attacks. And it was really taking a toll on me and my family. So I went to a therapist to see if I could get some help. And she suggested cognitive behavioral therapy, CBT, which I talked about. I agreed and I followed the cognitive behavioral therapy plan that she recommended. Now, after doing the CBT program, I noticed the frequency and duration of my panic attacks decreased and then they eventually went away. And I haven't had a panic attack in over 20 years. Later, when I was diagnosed with Parkinson's in my mid-40s, I learned that anxiety can occur years before motor symptoms appear. So that was how I dealt with my panic and anxiety was with cognitive behavioral therapy. All right, the next example is about a friend of mine named Mark who was diagnosed with Parkinson's at 58. And it wasn't the tremor that scared him the most. It was the anxiety that started to creep in afterward. He found that he was waking up nervous, worrying about the future, replaying all the what if scenarios in his mind that he couldn't control. You know, what if I end up in a nursing home? What if someone has to take care of me? Those type of things. And then what finally helped Mark turn the corner was using a combination of small, consistent steps. Mark said that he did a daily morning walk and focusing on what he saw along the way, looking at all the sites in nature and just focusing on that, and that kept his mind from being anxious. And then he learned CBT techniques to interrupt his repetitive thought, what-if thoughts. And he talked to his neurologist about his off periods because he noticed that that's when he was starting to see a lot of anxiety. And what Mark told me was that over time he developed a routine that included daily exercise, breathing exercises, and following the CBT coping tools that the therapist recommended. And that's like me, Mark said his anxiety didn't disappear overnight, but he got a better sense of control when he felt better about life. So you just have to remember, these things take time, but with the right help, you can do it. So as we wrap this up, let me say this clearly. Your anxiety is not your fault. Your brain is doing the best it can with the chemistry that it has. And now you have some tools to help you. You can live a great quality of life with Parkinson's, and understanding your brain is the first step. Now please talk to a healthcare professional if you're experiencing anxiety. They can help get you the right resources to help you manage your anxiety. I did it and it changed my life. You can too with proper professional resources. So if you found this episode helpful, I'd love for you to visit LiveParkinsons.com and subscribe to the free monthly newsletter. You'll get research back tools and resources delivered right to your inbox. And while you're there, check out the free articles, guides, and tools to help you live your best life with Parkinson's. Now, if you want to support the mission of helping other people with Parkinson's and help me continue researching, interviewing experts, and creating resources, you can click the support the show link or visit my Kofi page, kofi.com slash Live Parkinson's, and make a contribution. Every little bit helps me keep this work going. And don't forget to visit my YouTube channel, Live Parkinson's Live an Exceptional Life, where you can join my 30-day tip challenge, which is a series of daily, research-backed, lived experience tips to help you feel stronger, calmer, and more in control. Thank you for being here. Thank you for showing up for yourself. And until next time, stay healthy because there's a lot of stuff going around out there. Stay strong and live your best life with Parkinson's.