Social Interaction and Brain Health: The Parkinson's Connection

Discover why your social connections might be the most powerful medicine you're not taking!  In this evidence-based episode, we dive deep into groundbreaking research showing how maintaining social relationships with Parkinson's isn't just good for your mood—it's prescription-strength medicine for your brain. Whether you're newly diagnosed, have been living with PD for years, or you're a caregiver, this episode contains scientifically-backed strategies that could transform your approach to preventing social isolation and boosting cognitive health. 

 🧠 What You'll Discover: 

• Why social interaction and brain health are more connected than you ever imagined
• The hidden epidemic: 40% of people with Parkinson's experience social withdrawal
• How support groups for Parkinson's can literally slow disease progression
• 5 evidence-based strategies for building meaningful social connections despite PD challenges
• Why your coffee dates and game nights activate the same brain pathways affected by Parkinson's
• Practical solutions for overcoming communication, mobility, and stigma barriers

🆓 Free Resources Mentioned:

Visit liveparkinsons.com to access:

• Monthly newsletter with latest research and practical tips
• 9 Balance Exercises to improve stability and reduce fall risk
• Parkinson's Medication and Symptom Tracker for optimal timing
• Additional tools for living exceptionally with Parkinson's

❤️ Support the Show:

If this podcast adds value to your Parkinson's journey, please consider supporting our mission to reach more people with evidence-based, hope-filled content. Visit ko-fi.com/liveparkinsons to make a contribution and help us continue creating resources for the Parkinson's community.

📖 Learn More:

Dive deeper with "Spectacular Life: 4 Essential Strategies for Living with Parkinson's" for comprehensive action plans and personal stories that complement this episode's research.

 #ParkinsonsDisease #BrainHealth #SocialIsolation  #SocialConnection  #LiveParkinson #ExceptionalLife #ParkinsonsCommunity #ParkinsonsJourney  #SupportGroups #ParkinsonsCaregiver 

Chapters

• 0:10 Welcome and Episode Introduction
• 2:24 Social Isolation and Parkinson's Connection
• 7:33 The Perfect Storm of Social Awkwardness
• 14:14 Brain Science: How Social Connections Help
• 19:12 Evidence-Based Social Strategies
• 25:26 Taking Action and Episode Closing

Transcript

Speaker 1: 0:10

Hello and welcome to Live Parkinson's Live an Exceptional Life. I'm your host, chris Kustenbader, 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 talking about social interaction and brain health the Parkinson's connection. All right, buckle up, because I'm about to share something that completely blew my mind when I first read it. You know how we're always talking about the importance of staying social with Parkinson's. Well, get this. Brand new research from April 2024 found that being socially isolated doesn't just happen after you get diagnosed with Parkinson's. It might actually increase your chances of getting Parkinson's in the first place. Now I'm talking about a massive study of over 192,000 people published in one of the top research journals. The researchers discovered that people who were socially isolated had significantly higher odds of developing Parkinson's down the road. That's pretty mind-blowing, right, but here's the really cool part and why I'm so excited to dive into this with you today. If loneliness can hurt our brains, then connection can heal them, and I've got the research to prove it. So here's what we're diving into today, and, trust me, this is good stuff. First, I'm going to share some eye-opening research about why so many of us with Parkinson's end up feeling isolated and spoiler alert it's not your fault. Then we're going to geek out a little bit and what happens in our brain when we hang out with people you care about. It's like magic, but with science. And finally, I'm going to give you my favorite research-backed tricks for building the kind of social life that makes your brain go, thank you. So, whether you're newly diagnosed and wondering what's ahead, or you've been living with Parkinson's for years and want to shake things up a little bit, or you're a caregiver and you're trying to figure out how, the best way to support someone you love, I promise you're going to walk away from this episode with some seriously useful tools. So if you're ready to discover why your coffee dates and game nights might be the best medicine that you're not taking, then let's jump in.

Speaker 1: 2:22

All right, let's start with some real talk. You know that feeling when you start canceling plans because you're having a Parkinson's day, or when you realize it's been weeks since you've really talked to someone outside your immediate family. Yeah, that's what researchers call social isolation, and it turns out it's way more common and way more serious than most of us realize. Helen Maguda and her research team published some pretty sobering findings in October of 2020 in a paper titled Social Isolation and the Risk of Parkinson's in the UK Biobank Study, and what they discovered was that social isolation among people with Parkinson's isn't just about feeling lonely. It actually makes our symptoms worse and tanks our quality of life. But then, when COVID hit and they got to study what really happens when the whole world goes into isolation mode spoiler alert it wasn't pretty. So here's what really got my attention, though.

Speaker 1: 3:22

Another study found that 40% of people with Parkinson's experienced social withdrawal. That means, if you put 10 of us in a room, four of us are struggling feelings of being disconnected. Now, that's more common than tremor in some groups. Now let that sink in for just a minute. Start thinking. Well, of course, people with chronic illness feel isolated sometimes. Let me tell you why.

Speaker 1: 3:46

Parkinson's creates what I like to call the perfect storm of social awkwardness, and I say this with love, because I've lived every bit of it. So picture this You're at a party and your voice decides to take a coffee break right when someone asks you a question I know that's happened to me. Or you're at a dinner with friends and your hand starts doing its own little percussion on the table and you can't control it. Or maybe you're excited to share a story, but the words are playing hide and seek in your brain. They're just hanging out there on the tip of your tongue. I know that happens to me all the time and it's very frustrating. So these moments can make social situations feel less like fun and more like an obstacle course. So these moments can make social situations feel less like fun and more like an obstacle course.

Speaker 1: 4:27

Now the researchers Rowlandson and colleagues. They published a fascinating study in 2022 titled Social Withdrawal and Parkinson's, a scoping review that showed that we reduce our social activities in two ways. Sometimes we do it by choice, because we're tired or embarrassed, and sometimes not by choice, because we literally can't do what we used to do. It's like Parkinson's is this uninvited guest that keeps changing the rules of the social game. But here's where it gets really interesting and, honestly, to me it's a little heartbreaking. The research shows this creates what scientists call a downward spiral. So think about it like this Parkinson's already makes social stuff harder so that we do less social stuff, which makes us feel more isolated, which actually makes our Parkinson's symptoms worse, which makes us want to socialize even less. It's like a really mean merry-go-round that nobody wants to be on.

Speaker 1: 5:25

And then 2020 happened. The pandemic basically turned the whole world into one giant social isolation experiment. A study in JAMA Network looked at what happened to people with Parkinson's during prolonged isolation and wow, it was like watching dominoes fall. People experienced more depression, worse sleep and their motor symptoms actually got worse, all because they couldn't see their people. But wait, there's actually more, and by more I mean worse. But stay with me because we're getting to the good part here soon.

Speaker 1: 5:59

I don't want to be Mr Downer, but research shows that stigma plays a huge role in why we isolate ourselves. There was a study published in Neurological Sciences that found that many of us literally start hiding from social situations because we're worried about what other people are going to think. Now here's a statistic and it was pretty sobering and it made me put my coffee cup down for a minute and social isolation increases mortality risk by up to 50% in older adults. So for people with Parkinson's it might be even higher, because isolation speeds up both cognitive decline and motor symptoms. Now, I'm not trying to scare you. It's meant as a wake-up call, just to show you how serious that social isolation can actually be. But here's where the plot twists and why I'm actually excited about all this research.

Speaker 1: 6:49

If isolation creates a downward spiral, then connection creates an upward spiral. Right the same brain pathways that get damaged by loneliness can actually be strengthened and rebuilt through meaningful social connections. It's like our brains are just waiting for us to feed them some good, old-fashioned human interaction. So if you've been feeling isolated, first of all, you're definitely not alone. Literally 40% of us are in the same boat and second, there's some incredibly hopeful science out there that we can turn the ship around, so you don't have to feel lonely and isolated. Okay, now we're getting into the really cool stuff, the part where we talk about what's actually happening in our brain while we're hanging out with people that we care about, and, trust me, it's way more amazing than you might think. So there's this incredible study that came out in April of 2024 by Angela Palulu and her team, and it was titled Neurocognitive Impairment and Social Cognition in Parkinson's Disease Patients, and they basically figured out something that changes everything.

Speaker 1: 7:56

Well, you know how Parkinson's affects the parts of your brain that control movement. Well, it turns out, the same brain areas also are super important for social interaction. It's like discovering that your car's engine also runs your radio and suddenly that makes everything seems to make more sense. All right, let me break it down this way. And it doesn't require that you have a neuroscience degree. But your brain has these specialized circuits for social stuff that help us understand jokes, help us read facial expressions on other people, help us figure out if someone's being sarcastic or they're really being sincere when they're giving you a quote compliment. Now these circuits happen to overlap in areas that Parkinson's likes to mess with. So when PD shows up, it doesn't just crash the movement party, it also crashes our social party. But here's the absolutely mind-blowing part A study by ALO and colleagues found that 20% of people with Parkinson's have some social cognition challenges.

Speaker 1: 9:00

But and this is a big but these challenges are often reversible through targeted social engagement. It's like your brain saying hey, if you're going to use these social circuits, I'm going to keep them working in tip-top order. All right. Now let me tell you about dopamine, because this is where things get really exciting. You know how Parkinson's happens because our brains don't make enough dopamine, and we talked about this on other podcasts where the brain cells in the substantia nigra die off. Well, guess what triggers dopamine release? Yep, positive social interactions you nailed it, I knew you would. It's like every good conversation, every shared laugh that you have, every meaningful connection is giving your brain a little hit of the exact medicine that we're missing Now.

Speaker 1: 9:47

A comprehensive review in Frontiers in Aging Neuroscience showed that people with rich social networks maintain better brain function longer, even as Parkinson's progresses. The researchers called it cognitive reverse, which is basically like having a savings account for your brain. Every social interaction that you have is going to make a deposit. But wait, there's actually some more brain science coolness Well, unless if you're a science nerd like I am but Santangelo and colleagues published research in March 2021 that found something fascinating. Social cognition problems often show up before other thinking problems in Parkinson's, but they also respond better to intervention than other cognitive issues. It's like social brain skills are the first to go, but also the easiest to get back.

Speaker 1: 10:39

And here's something that really fascinated me and again I apologize for being a science nerd, but researchers use fancy brain imaging to see what happens during social interactions of people with Parkinson's, and they found that social engagement literally lights up brain networks that had gone dim, areas that were basically taking a nap, are suddenly awake and they start firing when we connect with other people. I thought that was very interesting. There's this concept called the theory of mind, which is just a fancy way of saying your ability to understand what people are thinking and feeling. Now there was some research done by Bora and colleagues and they found that while this ability can get rusty in Parkinson's, it gets significantly better when we participate in structured social activities. It's like think of it like riding a bike the first time. You haven't ridden a bike for a while. You might be wobbly at first, but then the skills come back. Now here's what really got me excited about all the research Longitudinal studies that follow people over time.

Speaker 1: 11:40

One multi-year study found that people with Parkinson's who maintained active social lives showed slower cognitive decline, better motor function and significantly higher quality of life scores. So social interaction isn't just fun. It's literally slowing down disease progression. So think about what happens during a good conversation. Your brain's working overtime because you're processing language, you're reading the emotions on the other person's face, you're pulling up memories and you're planning what to say next. So it's like doing exercise for your brain. Every chat with a friend is basically a workout for your neural networks because you're doing a lot of complex activities at one time. But here's what's really fascinating Research shows that social isolation actually changes brain structure.

Speaker 1: 12:29

Studies using brain imaging found that prolonged isolation leads to shrinkages in areas responsible for learning and memory, the same areas that are already vulnerable in Parkinson's. But the flip side is also true. Rich social engagement is associated with maintained brain volume and even the growth of new neural connections. So your brain literally grows when you socialize. And get this. There was a study published in Movement Disorders that found that people with Parkinson's who participated in regular social activities showed less disease progression over two years compared to those who stayed isolated.

Speaker 1: 13:09

Social isolation and engagement appears to have what researchers call neuroprotective effects. So in other words, your friendships might be better medicine than some of the stuff in your pill organizer. So I think you can start to see the trend here that social isolation can have devastating effects not only on our mood, and it can also affect our Parkinson's symptoms as well. Now here's my favorite way to think about all this research Every time you choose to connect with another person, whether it's a phone call to a friend, a coffee date with someone you haven't met in a while, joining a support group, or even just a good old text conversation, you're literally rewiring your brain for resilience. You're not just being social, you're being therapeutic.

Speaker 1: 13:54

Now the evidence is pretty overwhelming. Social connections aren't just nice to have, but they're prescription strength medicine for your brain. But knowing this and actually building meaningful connections when Parkinson's is throwing curveballs at you and, you know, depending on how you feel each day, that's a whole different challenge, which is exactly what we're going to try to talk about next. All right, now let's get to the fun part. We've talked about the science. Now let's talk about giving some practical solutions to help you stay more socially engaged. All right, this all sounds great, but how do you actually do it? Because, let's be honest, knowing that social interaction and connection is good for you and your brain and actually building these connections when you're dealing with unpredictable symptoms are really two different things, because some days you think I can't do it. First let me just say this If someone has ever told you, just get out more, you have my permission to roll your eyes. That advice is just about as helpful as telling someone with a broken leg, just walk it off.

Speaker 1: 14:54

The research shows we need to be much smarter and more strategic in how we connect socially. So here are some of my favorite evidence-based strategies that I found from the research that actually work in the real world with real Parkinson's challenges All right, strategy number one is make your social time count double. Now here's something cool that researchers discovered Social interactions that have purpose beyond just being social are like getting a bonus points for your brain. So I'm talking about doing things like volunteering, joining advocacy groups, taking classes, participating in clinical research studies. There was a study that was published in Gerontologist that found that people with chronic conditions who engaged in purposeful social activities had better outcomes than those just hanging out socially. It's like your brain is saying to yourself oh, you're just not chatting, we're doing something. Let me bring my A game All right now. The reason I love this is because it takes the pressure off. So instead of thinking I need to be more social, which can feel overwhelming, you can think I wanna help with this thing that I care about, so you can volunteer, and the social connection just happens naturally when you're not thinking necessarily about yourself and how your symptoms feel, but you're seeing that you're able to help somebody else. That's a great thing.

Speaker 1: 16:13

Now strategy number two is embrace your inner tech guru. We talked about a study from earlier about technology barriers. Well, the same research also found solution. Video calls, online support groups and, yes, even social media can be powerful tools when you use them strategically. So here's the key finding that changed how I think about digital connection One meaningful video conversation per week was more beneficial than multiple shallow online conversations. Quality over quantity people Just remember that. So maybe, instead of scrolling through Facebook for an hour, you schedule a 20-minute video call with someone that you really care about. Maybe it's a family member that lives far away, maybe your kids are going to college, whatever it happens to be.

Speaker 1: 17:00

Strategy number three get moving with people. This is where the research really gets exciting. Study after study shows that combining social interaction with physical activity creates what scientists call synergistic benefits Fancy words, for you get way more bang for your buck if you're doing two things at one time than if you're just doing one thing by itself. So things like dance classes, walking groups, tai chi, exercise programs designed for people with Parkinson's, which I've talked about in the past on part of the Momentum and the Punch program. These activities provide social connection and physical therapy in one package. There was a landmark study in movement disorder therapy and it found that people who participated in group exercise programs improved both motor symptoms and social functioning more than people who did either activity alone. Plus, there's something magical about struggling through a workout with other people. Nothing bonds you quite like collectively complaining about how hard balance exercises are All right.

Speaker 1: 18:02

Strategy number four Find your tribe with the right leader. Of course, not all support groups are created equally, and research proves it. Studies show that well-structured groups with trained facilitators are way more effective than informal groups. So if you're looking for a support group, look for groups that are led by a healthcare professional or trained peer leaders. So the most effective groups combine three things trained peer leaders. So the most effective groups combine three things Education, because you're learning stuff. Emotional support, because you're feeling understood, and then practical problem solving. They help you figure out real-world challenges that you're facing day-to-day in your Parkinson's journey. Now they also meet regularly with consistent members so you can actually build relationships instead of starting over each and every time that you meet. All right.

Speaker 1: 18:51

Strategy number five make it a family affair. Now here's something the research really made crystal clear Interventions that include both patients and caregivers work better than patient-only alone approaches. So this means looping your family members on social planning and helping them understand how to support your social life without them taking it over. So sometimes caregivers get so worried about us that they accidentally become social gatekeepers. The research shows that family education is key to successful reintegration. But you don't want it to the point where the caregiver says well, you're taking on too many things or you can't do that.

Speaker 1: 19:30

All right, now let's talk about tackling those pesky Parkinson's specific barriers. Okay, for those of us that have communication challenges I know that's part of the issues that I have from time to time because my voice tends to get soft the research shows that speech therapy combined with social communication practice in group settings works better than traditional one-on-one speech therapy. So just to help you with this, maybe you join a book club or a discussion group. You'll be working on your speech skills while having actual conversations about things that you actually care about. Now, if you have mobility issues, studies prove that social activities can be modified rather than abandoned. So don't feel that you can't take a group fitness class. Just tell the instructor that you have mobility problems and they'll be happy to modify the exercises for you. And then there's also virtual participation and there's always creative solutions, but we just have to go out and look for them, ready for fatigue and timing. Now this is huge.

Speaker 1: 20:31

Research shows that scheduling social activities during your optimal medication times and keeping interactions shorter but more frequent is way more sustainable than long marathon social events. So maybe you keep something to an hour and then you leave. Not, I'm spending all afternoon at the Parkinson's exercise class. All right, just remember. Work with your Parkinson's schedule, not against it. All right now for those of us that get embarrassed and you feel stigma when you go out because you have tremor or maybe your walking is off or your balance off or you're having trouble with your speech, let's talk about how we can address that. The research on this is really helpful. Studies show that gradual exposure in supportive environments helps reduce stigma-related social withdrawal. So it's almost just like exercise Start small, start safe, and then build your confidence back up.

Speaker 1: 21:30

Remember, people are more likely to want to help you than they are to make fun of you. That's just based on my personal experience. So here's my practical framework based on all the research. So start with one meaningful connection and then build slowly. The studies show that going from isolated to overwhelmed doesn't work either. So if you've been hanging around the house and you've become fairly socially isolated, you don't want to start going to these gigantic group settings all at one time. So start small. Maybe you meet a friend or two and then you build on it from there.

Speaker 1: 22:05

So choose activities that match your current reality, not your pre-Parkinson's reality. The research is clear on this. Social activities that match your current reality, not your pre-Parkinson's reality the research is clear on this. Social activities matched to your current capacity are more enjoyable and sustainable. And I know from personal experience and I've heard it from other people as well that we all say, well, I can't do the things that I used to do, and it's understandable. But there's also new things that you can go out and learn and you can do the things that you're capable of doing. So don't limit yourself because you say, oh, I can't do that anymore, all right.

Speaker 1: 22:38

The other next thing is mix routine and novelty. You need both the comfort of regular social connections, same people, same time, same place but then you need the brain boost of new social experiences. So mix it up. So maybe one time you meet for coffee or you play cards, another time you go out to dinner, another time you go to a movie, whatever it happens to be. Just try to mix and match your social activities. And then here's my favorite tip Track your social connections. Studies show that people who monitor their social engagement maintain their gains over time. So it could be as simple as putting a star on your calendar for every social interaction, or you could get a fancy tracking app, or you could just write it in your calendar. You can keep track of it that way too.

Speaker 1: 23:23

But the bottom line from all this research social connection for people with Parkinson's needs to be intentional, flexible and ongoing. Now we're not trying to get you to add your old social life back. We're creating a new one that works with your Parkinson's instead of against it. Now you know what I love most of all about this research it proves that every single time you choose connection over isolation, that means every phone call you make, every coffee date you have, and every time you say yes to an invitation when it would be easier to say no, you're literally giving your brain a gift. You're not just being social, you're being medicinal, and I know that taking that first step back into social connection can feel scary, especially if you've been hiding out for a while. Trust me, I get it. I've been there and I even bought the t-shirt at the gift shop to prove it. But here's the thing that you don't have to figure this out alone. Everyone's here to help you, and that's why I'm trying to build this community, so that everyone can cheer and help each other. So if today's episode has you thinking, okay, I want to try some of this stuff, then I want to make sure you have all the support you need to succeed.

Speaker 1: 24:32

Head on over to liveparkinsonscom and grab my free monthly newsletter, no-transcript. And then this month I'm also starting something new. Joan from the Momentum class loves to write, so each month she's going to have an article, and I wanted to reinforce her because she really likes to write and it's a good opportunity to share her stories. And then, while you're there, don't forget to download the free Parkinson's Medication and Symptom Tracker. Remember that research about timing social activities with your optimal medication windows. So this tracker is going to help you figure out when you're feeling your best, so that you can plan your social adventures accordingly.

Speaker 1: 25:26

All right, now here's your homework for the week. You didn't know you were having homework, oh, I'm sorry, and I'm calling it homework because the research shows that people who commit to specific actions are way more likely to follow through. Now what I'd like you to do is identify one social connection that you can make or strengthen this week. Just one. Just start small and then build from there. Maybe it's texting an old friend, maybe it's joining an online support group, or it's just saying yes to that invitation that you've been avoiding. Remember start small and start somewhere. And remember the journey of a thousand miles begins with a single footstep.

Speaker 1: 26:04

Now, if you find this podcast is helping you live better with Parkinson's and you want to help me reach more people with this kind of evidence-based content, I'd be so grateful. If you consider supporting the show, you can visit my Ko-fi page at ko-ficom slash liveparkinsons so you can help me keep this resource available to everyone who needs it. And hey, if you want to even dive deeper into some of the strategies that I've been using over the last 15 years and you've heard me say spectacular life and exceptional life of Parkinson's then check out my book with the exact title Spectacular Life Four Essential Strategies for Living with Parkinson's. It's packed with practical action plans, research references and personal stories that build on everything that we've talked about today. Now here's what I want you to remember as you head into next week.

Speaker 1: 26:52

Social isolation isn't your destiny with Parkinson's, and neither is cognitive decline. Every single day, you get to choose connection over isolation, engagement over withdrawal and spectacular over ordinary. It's on how you choose your friendships, your family connections, your coffee dates and phone calls and group activities. They're not just nice to have, they're medicine for your brain and therapy for your soul, and they're also a fuel for the kind of living that makes life with Parkinson's just one part of your story, not the whole story. So go out there and get your social prescription filled. Your brain's going to thank you, your heart will thank you and, honestly, the people in your life will thank you too, because connection isn't just good for you, it's good for everyone that's involved. I want to thank you for listening and remember stay healthy, stay strong and, as always, live your best life with Parkinson's. Thanks again, and I hope to see you soon.