September 3, 2025 • 28 mins
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
Disclaimer: This podcast is for educational purposes only is not intended to treat or diagnose Parkinson's Disease. Please ensure that you are following the treatment plan developed by your doctor. Please ensure before starting anything new you get approval from your doctor. The information being provided is based on my own personal experiences and does not guarantee that it will benefit everyone.
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To help support the podcast please visit me on my Ko-fi page and buy a cup of coffee if you feel that I am providing information that is relevant and actionable to help you live a better quality of life.
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Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Speaker 1 (00:10):
Hello and welcome to Live Parkinson's Live an
Exceptional Life.
I'm your host, chrisKustenbader, and I've been
living an exceptional life withParkinson's for the past 15
years.
The mission of this podcast isto help as many people as
possible living with Parkinson'sto lead a great quality of life
.
Now, today we're talking aboutsocial interaction and brain
health the Parkinson'sconnection.
All right, buckle up, becauseI'm about to share something
(00:34):
that completely blew my mindwhen I first read it.
You know how we're alwaystalking about the importance of
staying social with Parkinson's.
Well, get this.
Brand new research from April2024 found that being socially
isolated doesn't just happenafter you get diagnosed with
Parkinson's.
It might actually increase yourchances of getting Parkinson's
in the first place.
(00:55):
Now I'm talking about a massivestudy of over 192,000 people
published in one of the topresearch journals.
The researchers discovered thatpeople who were socially
isolated had significantlyhigher 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 excitedto dive into this with you
(01:17):
today.
If loneliness can hurt ourbrains, then connection can heal
them, and I've got the researchto prove it.
So here's what we're divinginto today, and, trust me, this
is good stuff.
First, I'm going to share someeye-opening research about why
so many of us with Parkinson'send up feeling isolated and
spoiler alert it's not yourfault.
(01:38):
Then we're going to geek out alittle bit and what happens in
our brain when we hang out withpeople you care about.
It's like magic, but withscience.
And finally, I'm going to giveyou my favorite research-backed
tricks for building the kind ofsocial life that makes your
brain go, thank you.
So, whether you're newlydiagnosed and wondering what's
(01:58):
ahead, or you've been livingwith Parkinson's for years and
want to shake things up a littlebit, or you're a caregiver and
you're trying to figure out how,the best way to support someone
you love, I promise you'regoing to walk away from this
episode with some seriouslyuseful tools.
So if you're ready to discoverwhy your coffee dates and game
nights might be the bestmedicine that you're not taking,
(02:19):
then let's jump in.
All right, let's start with somereal talk.
You know that feeling when youstart canceling plans because
you're having a Parkinson's day,or when you realize it's been
weeks since you've really talkedto someone outside your
immediate family.
Yeah, that's what researcherscall social isolation, and it
turns out it's way more commonand way more serious than most
(02:42):
of us realize.
Helen Maguda and her researchteam published some pretty
sobering findings in October of2020 in a paper titled Social
Isolation and the Risk ofParkinson's in the UK Biobank
Study, and what they discoveredwas that social isolation among
people with Parkinson's isn'tjust about feeling lonely.
(03:04):
It actually makes our symptomsworse and tanks our quality of
life.
But then, when COVID hit andthey got to study what really
happens when the whole worldgoes into isolation mode spoiler
alert it wasn't pretty.
So here's what really got myattention, though.
Another study found that 40% ofpeople with Parkinson's
(03:25):
experienced social withdrawal.
That means, if you put 10 of usin a room, four of us are
struggling feelings of beingdisconnected.
Now, that's more common thantremor in some groups.
Now let that sink in for just aminute.
Start thinking.
Well, of course, people withchronic illness feel isolated
(03:46):
sometimes.
Let me tell you why.
Parkinson's creates what I liketo call the perfect storm of
social awkwardness, and I saythis with love, because I've
lived every bit of it.
So picture this You're at aparty and your voice decides to
take a coffee break right whensomeone asks you a question I
know that's happened to me.
Or you're at a dinner withfriends and your hand starts
doing its own little percussionon the table and you can't
(04:08):
control it.
Or maybe you're excited toshare a story, but the words are
playing hide and seek in yourbrain.
They're just hanging out thereon the tip of your tongue.
I know that happens to me allthe time and it's very
frustrating.
So these moments can makesocial situations feel less like
fun and more like an obstaclecourse.
So these moments can makesocial situations feel less like
fun and more like an obstaclecourse.
Now the researchers Rowlandsonand colleagues.
They published a fascinatingstudy in 2022 titled Social
(04:32):
Withdrawal and Parkinson's, ascoping review that showed that
we reduce our social activitiesin two ways.
Sometimes we do it by choice,because we're tired or
embarrassed, and sometimes notby choice, because we literally
can't do what we used to do.
(04:53):
It's like Parkinson's is thisuninvited guest that keeps
changing the rules of the socialgame.
But here's where it gets reallyinteresting and, honestly, to
me it's a little heartbreaking.
The research shows this createswhat scientists call a downward
spiral.
So think about it like thisParkinson's already makes social
stuff harder so that we do lesssocial stuff, which makes us
feel more isolated, whichactually makes our Parkinson's
(05:16):
symptoms worse, which makes uswant to socialize even less.
It's like a really meanmerry-go-round that nobody wants
to be on.
And then 2020 happened.
The pandemic basically turnedthe whole world into one giant
social isolation experiment.
A study in JAMA Network lookedat what happened to people with
(05:36):
Parkinson's during prolongedisolation and wow, it was like
watching dominoes fall.
People experienced moredepression, worse sleep and
their motor symptoms actuallygot 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'regetting to the good part here
(05:58):
soon.
I don't want to be Mr Downer,but research shows that stigma
plays a huge role in why weisolate ourselves.
There was a study published inNeurological Sciences that found
that many of us literally starthiding from social situations
because we're worried about whatother people are going to think
.
Now here's a statistic and itwas pretty sobering and it made
(06:19):
me put my coffee cup down for aminute and social isolation
increases mortality risk by upto 50% in older adults.
So for people with Parkinson'sit might be even higher, because
isolation speeds up bothcognitive decline and motor
symptoms.
Now, I'm not trying to scareyou.
It's meant as a wake-up call,just to show you how serious
(06:41):
that social isolation canactually be.
But here's where the plottwists and why I'm actually
excited about all this research.
If isolation creates a downwardspiral, then connection creates
an upward spiral.
Right the same brain pathwaysthat get damaged by loneliness
can actually be strengthened andrebuilt through meaningful
(07:02):
social connections.
It's like our brains are justwaiting for us to feed them some
good, old-fashioned humaninteraction.
So if you've been feelingisolated, first of all, you're
definitely not alone.
Literally 40% of us are in thesame boat and second, there's
some incredibly hopeful scienceout there that we can turn the
ship around, so you don't haveto feel lonely and isolated.
(07:24):
Okay, now we're getting intothe really cool stuff, the part
where we talk about what'sactually happening in our brain
while we're hanging out withpeople that we care about, and,
trust me, it's way more amazingthan you might think.
So there's this incrediblestudy that came out in April of
2024 by Angela Palulu and herteam, and it was titled
(07:49):
Neurocognitive Impairment andSocial Cognition in Parkinson's
Disease Patients, and theybasically figured out something
that changes everything.
Well, you know how Parkinson'saffects the parts of your brain
that control movement.
Well, it turns out, the samebrain areas also are super
important for social interaction.
It's like discovering that yourcar's engine also runs your
radio and suddenly that makeseverything seems to make more
(08:13):
sense.
All right, let me break it downthis way.
And it doesn't require that youhave a neuroscience degree.
But your brain has thesespecialized circuits for social
stuff that help us understandjokes, help us read facial
expressions on other people,help us figure out if someone's
(08:37):
being sarcastic or they'rereally being sincere when
they're giving you a quotecompliment.
Now these circuits happen tooverlap in areas that
Parkinson's likes to mess with.
So when PD shows up, it doesn'tjust crash the movement party,
it also crashes our social party.
But here's the absolutelymind-blowing part A study by ALO
and colleagues found that 20%of people with Parkinson's have
some social cognition challenges.
(09:00):
But and this is a big but thesechallenges are often reversible
through targeted socialengagement.
It's like your brain saying hey, if you're going to use these
social circuits, I'm going tokeep them working in tip-top
order.
All right.
Now let me tell you aboutdopamine, because this is where
things get really exciting.
You know how Parkinson'shappens because our brains don't
(09:21):
make enough dopamine, and wetalked about this on other
podcasts where the brain cellsin the substantia nigra die off.
Well, guess what triggersdopamine release?
Yep, positive socialinteractions you nailed it, I
knew you would.
It's like every goodconversation, every shared laugh
that you have, every meaningfulconnection is giving your brain
(09:42):
a little hit of the exactmedicine that we're missing Now.
A comprehensive review inFrontiers in Aging Neuroscience
showed that people with richsocial networks maintain better
brain function longer, even asParkinson's progresses.
The researchers called itcognitive reverse, which is
(10:03):
basically like having a savingsaccount for your brain.
Every social interaction thatyou have is going to make a
deposit.
But wait, there's actually somemore brain science coolness
Well, unless if you're a sciencenerd like I am but Santangelo
and colleagues publishedresearch in March 2021 that
found something fascinating.
Social cognition problems oftenshow up before other thinking
(10:26):
problems in Parkinson's, butthey also respond better to
intervention than othercognitive issues.
It's like social brain skillsare the first to go, but also
the easiest to get back.
And here's something that reallyfascinated me and again I
apologize for being a sciencenerd, but researchers use fancy
(10:47):
brain imaging to see whathappens during social
interactions of people withParkinson's, and they found that
social engagement literallylights up brain networks that
had gone dim, areas that werebasically taking a nap, are
suddenly awake and they startfiring when we connect with
other people.
I thought that was veryinteresting.
There's this concept called thetheory of mind, which is just a
(11:08):
fancy way of saying yourability to understand what
people are thinking and feeling.
Now there was some researchdone by Bora and colleagues and
they found that while thisability can get rusty in
Parkinson's, it getssignificantly better when we
participate in structured socialactivities.
It's like think of it likeriding a bike the first time.
You haven't ridden a bike for awhile.
(11:30):
You might be wobbly at first,but then the skills come back.
Now here's what really got meexcited about all the research
Longitudinal studies that followpeople over time.
One multi-year study found thatpeople with Parkinson's who
maintained active social livesshowed slower cognitive decline,
better motor function andsignificantly higher quality of
(11:51):
life scores.
So social interaction isn'tjust fun.
It's literally slowing downdisease progression.
So think about what happensduring a good conversation.
Your brain's working overtimebecause you're processing
language, you're reading theemotions on the other person's
face, you're pulling up memoriesand you're planning what to say
(12:11):
next.
So it's like doing exercise foryour brain.
Every chat with a friend isbasically a workout for your
neural networks because you'redoing a lot of complex
activities at one time.
But here's what's reallyfascinating Research shows that
social isolation actuallychanges brain structure.
Studies using brain imagingfound that prolonged isolation
(12:32):
leads to shrinkages in areasresponsible for learning and
memory, the same areas that arealready vulnerable in
Parkinson's.
But the flip side is also true.
Rich social engagement isassociated with maintained brain
volume and even the growth ofnew neural connections.
So your brain literally growswhen you socialize.
(12:53):
And get this.
There was a study published inMovement Disorders that found
that people with Parkinson's whoparticipated in regular social
activities showed less diseaseprogression over two years
compared to those who stayedisolated.
Social isolation and engagementappears to have what researchers
call neuroprotective effects.
(13:14):
So in other words, yourfriendships might be better
medicine than some of the stuffin your pill organizer.
So I think you can start to seethe trend here that social
isolation can have devastatingeffects not only on our mood,
and it can also affect ourParkinson's symptoms as well.
Now here's my favorite way tothink about all this research
(13:35):
Every time you choose to connectwith another person, whether
it's a phone call to a friend, acoffee date with someone you
haven't met in a while, joininga 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.
Now the evidence is prettyoverwhelming.
(13:55):
Social connections aren't justnice to have, but they're
prescription strength medicinefor your brain.
But knowing this and actuallybuilding meaningful connections
when Parkinson's is throwingcurveballs at you and, you know,
depending on how you feel eachday, that's a whole different
challenge, which is exactly whatwe're going to try to talk
about next.
All right, now let's get to thefun part.
(14:17):
We've talked about the science.
Now let's talk about givingsome practical solutions to help
you stay more socially engaged.
All right, this all soundsgreat, but how do you actually
do it?
Because, let's be honest,knowing that social interaction
and connection is good for youand your brain and actually
building these connections whenyou're dealing with
unpredictable symptoms arereally two different things,
(14:39):
because some days you think Ican't do it.
First let me just say this Ifsomeone has ever told you, just
get out more, you have mypermission to roll your eyes.
That advice is just about ashelpful as telling someone with
a broken leg, just walk it off.
The research shows we need to bemuch smarter and more strategic
in how we connect socially.
So here are some of my favoriteevidence-based strategies that
(15:03):
I found from the research thatactually work in the real world
with real Parkinson's challengesAll right, strategy number one
is make your social time countdouble.
Now here's something cool thatresearchers discovered Social
interactions that have purposebeyond just being social are
like getting a bonus points foryour brain.
So I'm talking about doingthings like volunteering,
(15:25):
joining advocacy groups, takingclasses, participating in
clinical research studies.
There was a study that waspublished in Gerontologist that
found that people with chronicconditions who engaged in
purposeful social activities hadbetter outcomes than those just
hanging out socially.
It's like your brain is sayingto yourself oh, you're just not
(15:46):
chatting, we're doing something.
Let me bring my A game Allright now.
The reason I love this isbecause it takes the pressure
off.
So instead of thinking I needto be more social, which can
feel overwhelming, you can thinkI wanna help with this thing
that I care about, so you canvolunteer, and the social
connection just happensnaturally when you're not
thinking necessarily aboutyourself and how your symptoms
(16:08):
feel, but you're seeing thatyou're able to help somebody
else.
That's a great thing.
Now strategy number two isembrace your inner tech guru.
We talked about a study fromearlier about technology
barriers.
Well, the same research alsofound solution.
Video calls, online supportgroups and, yes, even social
media can be powerful tools whenyou use them strategically.
(16:30):
So here's the key finding thatchanged how I think about
digital connection Onemeaningful video conversation
per week was more beneficialthan multiple shallow online
conversations.
Quality over quantity peopleJust remember that.
So maybe, instead of scrollingthrough Facebook for an hour,
you schedule a 20-minute videocall with someone that you
(16:51):
really care about.
Maybe it's a family member thatlives far away, maybe your kids
are going to college, whateverit happens to be.
Strategy number three get movingwith people.
This is where the researchreally gets exciting.
Study after study shows thatcombining social interaction
with physical activity createswhat scientists call synergistic
(17:12):
benefits Fancy words, for youget way more bang for your buck
if you're doing two things atone time than if you're just
doing one thing by itself.
So things like dance classes,walking groups, tai chi,
exercise programs designed forpeople with Parkinson's, which
I've talked about in the past onpart of the Momentum and the
Punch program.
These activities provide socialconnection and physical therapy
(17:37):
in one package.
There was a landmark study inmovement disorder therapy and it
found that people whoparticipated in group exercise
programs improved both motorsymptoms and social functioning
more than people who did eitheractivity alone.
Plus, there's something magicalabout struggling through a
workout with other people.
Nothing bonds you quite likecollectively complaining about
(17:59):
how hard balance exercises areAll right.
Strategy number four Find yourtribe with the right leader.
Of course, not all supportgroups are created equally, and
research proves it.
Studies show thatwell-structured groups with
trained facilitators are waymore effective than informal
groups.
So if you're looking for asupport group, look for groups
(18:22):
that are led by a healthcareprofessional or trained peer
leaders.
So the most effective groupscombine three things trained
peer leaders.
So the most effective groupscombine three things Education,
because you're learning stuff.
Emotional support, becauseyou're feeling understood, and
then practical problem solving.
They help you figure outreal-world challenges that
you're facing day-to-day in yourParkinson's journey.
Now they also meet regularlywith consistent members so you
(18:45):
can actually build relationshipsinstead of starting over each
and every time that you meet.
All right.
Strategy number five make it afamily affair.
Now here's something theresearch really made crystal
clear Interventions that includeboth patients and caregivers
work better than patient-onlyalone approaches.
So this means looping yourfamily members on social
(19:07):
planning and helping themunderstand how to support your
social life without them takingit over.
So sometimes caregivers get soworried about us that they
accidentally become socialgatekeepers.
The research shows that familyeducation is key to successful
reintegration.
But you don't want it to thepoint where the caregiver says
well, you're taking on too manythings or you can't do that.
(19:30):
All right, now let's talk abouttackling those pesky Parkinson's
specific barriers.
Okay, for those of us that havecommunication challenges I know
that's part of the issues thatI have from time to time because
my voice tends to get soft theresearch shows that speech
therapy combined with socialcommunication practice in group
settings works better thantraditional one-on-one speech
(19:50):
therapy.
So just to help you with this,maybe you join a book club or a
discussion group.
You'll be working on yourspeech skills while having
actual conversations aboutthings that you actually care
about.
Now, if you have mobilityissues, studies prove that
social activities can bemodified rather than abandoned.
So don't feel that you can'ttake a group fitness class.
(20:13):
Just tell the instructor thatyou have mobility problems and
they'll be happy to modify theexercises for you.
And then there's also virtualparticipation and there's always
creative solutions, but we justhave to go out and look for
them, ready for fatigue andtiming.
Now this is huge.
Research shows that schedulingsocial activities during your
(20:34):
optimal medication times andkeeping interactions shorter but
more frequent is way moresustainable than long marathon
social events.
So maybe you keep something toan hour and then you leave.
Not, I'm spending all afternoonat the Parkinson's exercise
class.
All right, just remember.
(20:54):
Work with your Parkinson'sschedule, not against it.
All right now for those of usthat get embarrassed and you
feel stigma when you go outbecause you have tremor or maybe
your walking is off or yourbalance off or you're having
trouble with your speech, let'stalk about how we can address
that.
The research on this is reallyhelpful.
(21:15):
Studies show that gradualexposure in supportive
environments helps reducestigma-related social withdrawal
.
So it's almost just likeexercise Start small, start safe
, and then build your confidenceback up.
Remember, people are more likelyto want to help you than they
are to make fun of you.
That's just based on mypersonal experience.
(21:37):
So here's my practicalframework based on all the
research.
So start with one meaningfulconnection and then build slowly
.
The studies show that goingfrom isolated to overwhelmed
doesn't work either.
So if you've been hangingaround the house and you've
become fairly socially isolated,you don't want to start going
to these gigantic group settingsall at one time.
(21:59):
So start small.
Maybe you meet a friend or twoand then you build on it from
there.
So choose activities that matchyour current reality, not your
pre-Parkinson's reality.
The research is clear on this.
Social activities that matchyour current reality, not your
pre-Parkinson's reality theresearch is clear on this.
Social activities matched toyour current capacity are more
enjoyable and sustainable.
And I know from personalexperience and I've heard it
(22:19):
from other people as well thatwe all say, well, I can't do the
things that I used to do, andit's understandable.
But there's also new thingsthat you can go out and learn
and you can do the things thatyou're capable of doing.
So don't limit yourself becauseyou say, oh, I can't do that
anymore, all right.
The other next thing is mixroutine and novelty.
(22:40):
You need both the comfort ofregular social connections, same
people, same time, same placebut then you need the brain
boost of new social experiences.
So mix it up.
So maybe one time you meet forcoffee or you play cards,
another time you go out todinner, another time you go to a
movie, whatever it happens tobe.
Just try to mix and match yoursocial activities.
(23:03):
And then here's my favorite tipTrack your social connections.
Studies show that people whomonitor their social engagement
maintain their gains over time.
So it could be as simple asputting a star on your calendar
for every social interaction, oryou could get a fancy tracking
app, or you could just write itin your calendar.
You can keep track of it thatway too.
(23:23):
But the bottom line from allthis research social connection
for people with Parkinson'sneeds to be intentional,
flexible and ongoing.
Now we're not trying to get youto add your old social life
back.
We're creating a new one thatworks with your Parkinson's
instead of against it.
Now you know what I love mostof all about this research it
proves that every single timeyou choose connection over
(23:45):
isolation, that means everyphone call you make, every
coffee date you have, and everytime you say yes to an
invitation when it would beeasier to say no, you're
literally giving your brain agift.
You're not just being social,you're being medicinal, and I
know that taking that first stepback into social connection can
feel scary, especially ifyou've been hiding out for a
(24:06):
while.
Trust me, I get it.
I've been there and I evenbought the t-shirt at the gift
shop to prove it.
But here's the thing that youdon'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 thateveryone can cheer and help each
other.
So if today's episode has youthinking, okay, I want to try
(24:27):
some of this stuff, then I wantto make sure you have all the
support you need to succeed.
Head on over toliveparkinsonscom and grab my
free monthly newsletter,no-transcript.
(24:51):
And then this month I'm alsostarting something new.
Joan from the Momentum classloves to write, so each month
she's going to have an article,and I wanted to reinforce her
because she really likes towrite 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 andSymptom Tracker.
(25:13):
Remember that research abouttiming social activities with
your optimal medication windows.
So this tracker is going tohelp you figure out when you're
feeling your best, so that youcan plan your social adventures
accordingly.
All right, now here's yourhomework for the week.
You didn't know you were havinghomework, oh, I'm sorry, and
I'm calling it homework becausethe research shows that people
(25:34):
who commit to specific actionsare way more likely to follow
through.
Now what I'd like you to do isidentify one social connection
that you can make or strengthenthis week.
Just one.
Just start small and then buildfrom there.
Maybe it's texting an oldfriend, maybe it's joining an
online support group, or it'sjust saying yes to that
invitation that you've beenavoiding.
(25:55):
Remember start small and startsomewhere.
And remember the journey of athousand miles begins with a
single footstep.
Now, if you find this podcast ishelping you live better with
Parkinson's and you want to helpme reach more people with this
kind of evidence-based content,I'd be so grateful.
If you consider supporting theshow, you can visit my Ko-fi
(26:16):
page at ko-ficom slashliveparkinsons so you can help
me keep this resource availableto everyone who needs it.
And hey, if you want to evendive deeper into some of the
strategies that I've been usingover the last 15 years and
you've heard me say spectacularlife and exceptional life of
Parkinson's then check out mybook with the exact title
(26:37):
Spectacular Life Four EssentialStrategies for Living with
Parkinson's.
It's packed with practicalaction plans, research
references and personal storiesthat build on everything that
we've talked about today.
Now here's what I want you toremember as you head into next
week.
Social isolation isn't yourdestiny with Parkinson's, and
neither is cognitive decline.
(26:57):
Every single day, you get tochoose connection over isolation
, engagement over withdrawal andspectacular over ordinary.
It's on how you choose yourfriendships, your family
connections, your coffee datesand phone calls and group
activities.
They're not just nice to have,they're medicine for your brain
(27:20):
and therapy for your soul, andthey're also a fuel for the kind
of living that makes life withParkinson's just one part of
your story, not the whole story.
So go out there and get yoursocial prescription filled.
Your brain's going to thank you, your heart will thank you and,
honestly, the people in yourlife will thank you too, because
connection isn't just good foryou, it's good for everyone
(27:43):
that's involved.
I want to thank you forlistening and remember stay
healthy, stay strong and, asalways, live your best life with
Parkinson's.
Thanks again, and I hope to seeyou soon.
Hello and welcome to Live Parkinson's Live an
Exceptional Life.
I'm your host, chrisKustenbader, and I've been
living an exceptional life withParkinson's for the past 15
years.
The mission of this podcast isto help as many people as
possible living with Parkinson'sto lead a great quality of life
.
Now, today we're talking aboutsocial interaction and brain
health the Parkinson'sconnection.
All right, buckle up, becauseI'm about to share something
(00:34):
that completely blew my mindwhen I first read it.
You know how we're alwaystalking about the importance of
staying social with Parkinson's.
Well, get this.
Brand new research from April2024 found that being socially
isolated doesn't just happenafter you get diagnosed with
Parkinson's.
It might actually increase yourchances of getting Parkinson's
in the first place.
(00:55):
Now I'm talking about a massivestudy of over 192,000 people
published in one of the topresearch journals.
The researchers discovered thatpeople who were socially
isolated had significantlyhigher 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 excitedto dive into this with you
(01:17):
today.
If loneliness can hurt ourbrains, then connection can heal
them, and I've got the researchto prove it.
So here's what we're divinginto today, and, trust me, this
is good stuff.
First, I'm going to share someeye-opening research about why
so many of us with Parkinson'send up feeling isolated and
spoiler alert it's not yourfault.
(01:38):
Then we're going to geek out alittle bit and what happens in
our brain when we hang out withpeople you care about.
It's like magic, but withscience.
And finally, I'm going to giveyou my favorite research-backed
tricks for building the kind ofsocial life that makes your
brain go, thank you.
So, whether you're newlydiagnosed and wondering what's
(01:58):
ahead, or you've been livingwith Parkinson's for years and
want to shake things up a littlebit, or you're a caregiver and
you're trying to figure out how,the best way to support someone
you love, I promise you'regoing to walk away from this
episode with some seriouslyuseful tools.
So if you're ready to discoverwhy your coffee dates and game
nights might be the bestmedicine that you're not taking,
(02:19):
then let's jump in.
All right, let's start with somereal talk.
You know that feeling when youstart canceling plans because
you're having a Parkinson's day,or when you realize it's been
weeks since you've really talkedto someone outside your
immediate family.
Yeah, that's what researcherscall social isolation, and it
turns out it's way more commonand way more serious than most
(02:42):
of us realize.
Helen Maguda and her researchteam published some pretty
sobering findings in October of2020 in a paper titled Social
Isolation and the Risk ofParkinson's in the UK Biobank
Study, and what they discoveredwas that social isolation among
people with Parkinson's isn'tjust about feeling lonely.
(03:04):
It actually makes our symptomsworse and tanks our quality of
life.
But then, when COVID hit andthey got to study what really
happens when the whole worldgoes into isolation mode spoiler
alert it wasn't pretty.
So here's what really got myattention, though.
Another study found that 40% ofpeople with Parkinson's
(03:25):
experienced social withdrawal.
That means, if you put 10 of usin a room, four of us are
struggling feelings of beingdisconnected.
Now, that's more common thantremor in some groups.
Now let that sink in for just aminute.
Start thinking.
Well, of course, people withchronic illness feel isolated
(03:46):
sometimes.
Let me tell you why.
Parkinson's creates what I liketo call the perfect storm of
social awkwardness, and I saythis with love, because I've
lived every bit of it.
So picture this You're at aparty and your voice decides to
take a coffee break right whensomeone asks you a question I
know that's happened to me.
Or you're at a dinner withfriends and your hand starts
doing its own little percussionon the table and you can't
(04:08):
control it.
Or maybe you're excited toshare a story, but the words are
playing hide and seek in yourbrain.
They're just hanging out thereon the tip of your tongue.
I know that happens to me allthe time and it's very
frustrating.
So these moments can makesocial situations feel less like
fun and more like an obstaclecourse.
So these moments can makesocial situations feel less like
fun and more like an obstaclecourse.
Now the researchers Rowlandsonand colleagues.
They published a fascinatingstudy in 2022 titled Social
(04:32):
Withdrawal and Parkinson's, ascoping review that showed that
we reduce our social activitiesin two ways.
Sometimes we do it by choice,because we're tired or
embarrassed, and sometimes notby choice, because we literally
can't do what we used to do.
(04:53):
It's like Parkinson's is thisuninvited guest that keeps
changing the rules of the socialgame.
But here's where it gets reallyinteresting and, honestly, to
me it's a little heartbreaking.
The research shows this createswhat scientists call a downward
spiral.
So think about it like thisParkinson's already makes social
stuff harder so that we do lesssocial stuff, which makes us
feel more isolated, whichactually makes our Parkinson's
(05:16):
symptoms worse, which makes uswant to socialize even less.
It's like a really meanmerry-go-round that nobody wants
to be on.
And then 2020 happened.
The pandemic basically turnedthe whole world into one giant
social isolation experiment.
A study in JAMA Network lookedat what happened to people with
(05:36):
Parkinson's during prolongedisolation and wow, it was like
watching dominoes fall.
People experienced moredepression, worse sleep and
their motor symptoms actuallygot 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'regetting to the good part here
(05:58):
soon.
I don't want to be Mr Downer,but research shows that stigma
plays a huge role in why weisolate ourselves.
There was a study published inNeurological Sciences that found
that many of us literally starthiding from social situations
because we're worried about whatother people are going to think
.
Now here's a statistic and itwas pretty sobering and it made
(06:19):
me put my coffee cup down for aminute and social isolation
increases mortality risk by upto 50% in older adults.
So for people with Parkinson'sit might be even higher, because
isolation speeds up bothcognitive decline and motor
symptoms.
Now, I'm not trying to scareyou.
It's meant as a wake-up call,just to show you how serious
(06:41):
that social isolation canactually be.
But here's where the plottwists and why I'm actually
excited about all this research.
If isolation creates a downwardspiral, then connection creates
an upward spiral.
Right the same brain pathwaysthat get damaged by loneliness
can actually be strengthened andrebuilt through meaningful
(07:02):
social connections.
It's like our brains are justwaiting for us to feed them some
good, old-fashioned humaninteraction.
So if you've been feelingisolated, first of all, you're
definitely not alone.
Literally 40% of us are in thesame boat and second, there's
some incredibly hopeful scienceout there that we can turn the
ship around, so you don't haveto feel lonely and isolated.
(07:24):
Okay, now we're getting intothe really cool stuff, the part
where we talk about what'sactually happening in our brain
while we're hanging out withpeople that we care about, and,
trust me, it's way more amazingthan you might think.
So there's this incrediblestudy that came out in April of
2024 by Angela Palulu and herteam, and it was titled
(07:49):
Neurocognitive Impairment andSocial Cognition in Parkinson's
Disease Patients, and theybasically figured out something
that changes everything.
Well, you know how Parkinson'saffects the parts of your brain
that control movement.
Well, it turns out, the samebrain areas also are super
important for social interaction.
It's like discovering that yourcar's engine also runs your
radio and suddenly that makeseverything seems to make more
(08:13):
sense.
All right, let me break it downthis way.
And it doesn't require that youhave a neuroscience degree.
But your brain has thesespecialized circuits for social
stuff that help us understandjokes, help us read facial
expressions on other people,help us figure out if someone's
(08:37):
being sarcastic or they'rereally being sincere when
they're giving you a quotecompliment.
Now these circuits happen tooverlap in areas that
Parkinson's likes to mess with.
So when PD shows up, it doesn'tjust crash the movement party,
it also crashes our social party.
But here's the absolutelymind-blowing part A study by ALO
and colleagues found that 20%of people with Parkinson's have
some social cognition challenges.
(09:00):
But and this is a big but thesechallenges are often reversible
through targeted socialengagement.
It's like your brain saying hey, if you're going to use these
social circuits, I'm going tokeep them working in tip-top
order.
All right.
Now let me tell you aboutdopamine, because this is where
things get really exciting.
You know how Parkinson'shappens because our brains don't
(09:21):
make enough dopamine, and wetalked about this on other
podcasts where the brain cellsin the substantia nigra die off.
Well, guess what triggersdopamine release?
Yep, positive socialinteractions you nailed it, I
knew you would.
It's like every goodconversation, every shared laugh
that you have, every meaningfulconnection is giving your brain
(09:42):
a little hit of the exactmedicine that we're missing Now.
A comprehensive review inFrontiers in Aging Neuroscience
showed that people with richsocial networks maintain better
brain function longer, even asParkinson's progresses.
The researchers called itcognitive reverse, which is
(10:03):
basically like having a savingsaccount for your brain.
Every social interaction thatyou have is going to make a
deposit.
But wait, there's actually somemore brain science coolness
Well, unless if you're a sciencenerd like I am but Santangelo
and colleagues publishedresearch in March 2021 that
found something fascinating.
Social cognition problems oftenshow up before other thinking
(10:26):
problems in Parkinson's, butthey also respond better to
intervention than othercognitive issues.
It's like social brain skillsare the first to go, but also
the easiest to get back.
And here's something that reallyfascinated me and again I
apologize for being a sciencenerd, but researchers use fancy
(10:47):
brain imaging to see whathappens during social
interactions of people withParkinson's, and they found that
social engagement literallylights up brain networks that
had gone dim, areas that werebasically taking a nap, are
suddenly awake and they startfiring when we connect with
other people.
I thought that was veryinteresting.
There's this concept called thetheory of mind, which is just a
(11:08):
fancy way of saying yourability to understand what
people are thinking and feeling.
Now there was some researchdone by Bora and colleagues and
they found that while thisability can get rusty in
Parkinson's, it getssignificantly better when we
participate in structured socialactivities.
It's like think of it likeriding a bike the first time.
You haven't ridden a bike for awhile.
(11:30):
You might be wobbly at first,but then the skills come back.
Now here's what really got meexcited about all the research
Longitudinal studies that followpeople over time.
One multi-year study found thatpeople with Parkinson's who
maintained active social livesshowed slower cognitive decline,
better motor function andsignificantly higher quality of
(11:51):
life scores.
So social interaction isn'tjust fun.
It's literally slowing downdisease progression.
So think about what happensduring a good conversation.
Your brain's working overtimebecause you're processing
language, you're reading theemotions on the other person's
face, you're pulling up memoriesand you're planning what to say
(12:11):
next.
So it's like doing exercise foryour brain.
Every chat with a friend isbasically a workout for your
neural networks because you'redoing a lot of complex
activities at one time.
But here's what's reallyfascinating Research shows that
social isolation actuallychanges brain structure.
Studies using brain imagingfound that prolonged isolation
(12:32):
leads to shrinkages in areasresponsible for learning and
memory, the same areas that arealready vulnerable in
Parkinson's.
But the flip side is also true.
Rich social engagement isassociated with maintained brain
volume and even the growth ofnew neural connections.
So your brain literally growswhen you socialize.
(12:53):
And get this.
There was a study published inMovement Disorders that found
that people with Parkinson's whoparticipated in regular social
activities showed less diseaseprogression over two years
compared to those who stayedisolated.
Social isolation and engagementappears to have what researchers
call neuroprotective effects.
(13:14):
So in other words, yourfriendships might be better
medicine than some of the stuffin your pill organizer.
So I think you can start to seethe trend here that social
isolation can have devastatingeffects not only on our mood,
and it can also affect ourParkinson's symptoms as well.
Now here's my favorite way tothink about all this research
(13:35):
Every time you choose to connectwith another person, whether
it's a phone call to a friend, acoffee date with someone you
haven't met in a while, joininga 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.
Now the evidence is prettyoverwhelming.
(13:55):
Social connections aren't justnice to have, but they're
prescription strength medicinefor your brain.
But knowing this and actuallybuilding meaningful connections
when Parkinson's is throwingcurveballs at you and, you know,
depending on how you feel eachday, that's a whole different
challenge, which is exactly whatwe're going to try to talk
about next.
All right, now let's get to thefun part.
(14:17):
We've talked about the science.
Now let's talk about givingsome practical solutions to help
you stay more socially engaged.
All right, this all soundsgreat, but how do you actually
do it?
Because, let's be honest,knowing that social interaction
and connection is good for youand your brain and actually
building these connections whenyou're dealing with
unpredictable symptoms arereally two different things,
(14:39):
because some days you think Ican't do it.
First let me just say this Ifsomeone has ever told you, just
get out more, you have mypermission to roll your eyes.
That advice is just about ashelpful as telling someone with
a broken leg, just walk it off.
The research shows we need to bemuch smarter and more strategic
in how we connect socially.
So here are some of my favoriteevidence-based strategies that
(15:03):
I found from the research thatactually work in the real world
with real Parkinson's challengesAll right, strategy number one
is make your social time countdouble.
Now here's something cool thatresearchers discovered Social
interactions that have purposebeyond just being social are
like getting a bonus points foryour brain.
So I'm talking about doingthings like volunteering,
(15:25):
joining advocacy groups, takingclasses, participating in
clinical research studies.
There was a study that waspublished in Gerontologist that
found that people with chronicconditions who engaged in
purposeful social activities hadbetter outcomes than those just
hanging out socially.
It's like your brain is sayingto yourself oh, you're just not
(15:46):
chatting, we're doing something.
Let me bring my A game Allright now.
The reason I love this isbecause it takes the pressure
off.
So instead of thinking I needto be more social, which can
feel overwhelming, you can thinkI wanna help with this thing
that I care about, so you canvolunteer, and the social
connection just happensnaturally when you're not
thinking necessarily aboutyourself and how your symptoms
(16:08):
feel, but you're seeing thatyou're able to help somebody
else.
That's a great thing.
Now strategy number two isembrace your inner tech guru.
We talked about a study fromearlier about technology
barriers.
Well, the same research alsofound solution.
Video calls, online supportgroups and, yes, even social
media can be powerful tools whenyou use them strategically.
(16:30):
So here's the key finding thatchanged how I think about
digital connection Onemeaningful video conversation
per week was more beneficialthan multiple shallow online
conversations.
Quality over quantity peopleJust remember that.
So maybe, instead of scrollingthrough Facebook for an hour,
you schedule a 20-minute videocall with someone that you
(16:51):
really care about.
Maybe it's a family member thatlives far away, maybe your kids
are going to college, whateverit happens to be.
Strategy number three get movingwith people.
This is where the researchreally gets exciting.
Study after study shows thatcombining social interaction
with physical activity createswhat scientists call synergistic
(17:12):
benefits Fancy words, for youget way more bang for your buck
if you're doing two things atone time than if you're just
doing one thing by itself.
So things like dance classes,walking groups, tai chi,
exercise programs designed forpeople with Parkinson's, which
I've talked about in the past onpart of the Momentum and the
Punch program.
These activities provide socialconnection and physical therapy
(17:37):
in one package.
There was a landmark study inmovement disorder therapy and it
found that people whoparticipated in group exercise
programs improved both motorsymptoms and social functioning
more than people who did eitheractivity alone.
Plus, there's something magicalabout struggling through a
workout with other people.
Nothing bonds you quite likecollectively complaining about
(17:59):
how hard balance exercises areAll right.
Strategy number four Find yourtribe with the right leader.
Of course, not all supportgroups are created equally, and
research proves it.
Studies show thatwell-structured groups with
trained facilitators are waymore effective than informal
groups.
So if you're looking for asupport group, look for groups
(18:22):
that are led by a healthcareprofessional or trained peer
leaders.
So the most effective groupscombine three things trained
peer leaders.
So the most effective groupscombine three things Education,
because you're learning stuff.
Emotional support, becauseyou're feeling understood, and
then practical problem solving.
They help you figure outreal-world challenges that
you're facing day-to-day in yourParkinson's journey.
Now they also meet regularlywith consistent members so you
(18:45):
can actually build relationshipsinstead of starting over each
and every time that you meet.
All right.
Strategy number five make it afamily affair.
Now here's something theresearch really made crystal
clear Interventions that includeboth patients and caregivers
work better than patient-onlyalone approaches.
So this means looping yourfamily members on social
(19:07):
planning and helping themunderstand how to support your
social life without them takingit over.
So sometimes caregivers get soworried about us that they
accidentally become socialgatekeepers.
The research shows that familyeducation is key to successful
reintegration.
But you don't want it to thepoint where the caregiver says
well, you're taking on too manythings or you can't do that.
(19:30):
All right, now let's talk abouttackling those pesky Parkinson's
specific barriers.
Okay, for those of us that havecommunication challenges I know
that's part of the issues thatI have from time to time because
my voice tends to get soft theresearch shows that speech
therapy combined with socialcommunication practice in group
settings works better thantraditional one-on-one speech
(19:50):
therapy.
So just to help you with this,maybe you join a book club or a
discussion group.
You'll be working on yourspeech skills while having
actual conversations aboutthings that you actually care
about.
Now, if you have mobilityissues, studies prove that
social activities can bemodified rather than abandoned.
So don't feel that you can'ttake a group fitness class.
(20:13):
Just tell the instructor thatyou have mobility problems and
they'll be happy to modify theexercises for you.
And then there's also virtualparticipation and there's always
creative solutions, but we justhave to go out and look for
them, ready for fatigue andtiming.
Now this is huge.
Research shows that schedulingsocial activities during your
(20:34):
optimal medication times andkeeping interactions shorter but
more frequent is way moresustainable than long marathon
social events.
So maybe you keep something toan hour and then you leave.
Not, I'm spending all afternoonat the Parkinson's exercise
class.
All right, just remember.
(20:54):
Work with your Parkinson'sschedule, not against it.
All right now for those of usthat get embarrassed and you
feel stigma when you go outbecause you have tremor or maybe
your walking is off or yourbalance off or you're having
trouble with your speech, let'stalk about how we can address
that.
The research on this is reallyhelpful.
(21:15):
Studies show that gradualexposure in supportive
environments helps reducestigma-related social withdrawal
.
So it's almost just likeexercise Start small, start safe
, and then build your confidenceback up.
Remember, people are more likelyto want to help you than they
are to make fun of you.
That's just based on mypersonal experience.
(21:37):
So here's my practicalframework based on all the
research.
So start with one meaningfulconnection and then build slowly
.
The studies show that goingfrom isolated to overwhelmed
doesn't work either.
So if you've been hangingaround the house and you've
become fairly socially isolated,you don't want to start going
to these gigantic group settingsall at one time.
(21:59):
So start small.
Maybe you meet a friend or twoand then you build on it from
there.
So choose activities that matchyour current reality, not your
pre-Parkinson's reality.
The research is clear on this.
Social activities that matchyour current reality, not your
pre-Parkinson's reality theresearch is clear on this.
Social activities matched toyour current capacity are more
enjoyable and sustainable.
And I know from personalexperience and I've heard it
(22:19):
from other people as well thatwe all say, well, I can't do the
things that I used to do, andit's understandable.
But there's also new thingsthat you can go out and learn
and you can do the things thatyou're capable of doing.
So don't limit yourself becauseyou say, oh, I can't do that
anymore, all right.
The other next thing is mixroutine and novelty.
(22:40):
You need both the comfort ofregular social connections, same
people, same time, same placebut then you need the brain
boost of new social experiences.
So mix it up.
So maybe one time you meet forcoffee or you play cards,
another time you go out todinner, another time you go to a
movie, whatever it happens tobe.
Just try to mix and match yoursocial activities.
(23:03):
And then here's my favorite tipTrack your social connections.
Studies show that people whomonitor their social engagement
maintain their gains over time.
So it could be as simple asputting a star on your calendar
for every social interaction, oryou could get a fancy tracking
app, or you could just write itin your calendar.
You can keep track of it thatway too.
(23:23):
But the bottom line from allthis research social connection
for people with Parkinson'sneeds to be intentional,
flexible and ongoing.
Now we're not trying to get youto add your old social life
back.
We're creating a new one thatworks with your Parkinson's
instead of against it.
Now you know what I love mostof all about this research it
proves that every single timeyou choose connection over
(23:45):
isolation, that means everyphone call you make, every
coffee date you have, and everytime you say yes to an
invitation when it would beeasier to say no, you're
literally giving your brain agift.
You're not just being social,you're being medicinal, and I
know that taking that first stepback into social connection can
feel scary, especially ifyou've been hiding out for a
(24:06):
while.
Trust me, I get it.
I've been there and I evenbought the t-shirt at the gift
shop to prove it.
But here's the thing that youdon'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 thateveryone can cheer and help each
other.
So if today's episode has youthinking, okay, I want to try
(24:27):
some of this stuff, then I wantto make sure you have all the
support you need to succeed.
Head on over toliveparkinsonscom and grab my
free monthly newsletter,no-transcript.
(24:51):
And then this month I'm alsostarting something new.
Joan from the Momentum classloves to write, so each month
she's going to have an article,and I wanted to reinforce her
because she really likes towrite 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 andSymptom Tracker.
(25:13):
Remember that research abouttiming social activities with
your optimal medication windows.
So this tracker is going tohelp you figure out when you're
feeling your best, so that youcan plan your social adventures
accordingly.
All right, now here's yourhomework for the week.
You didn't know you were havinghomework, oh, I'm sorry, and
I'm calling it homework becausethe research shows that people
(25:34):
who commit to specific actionsare way more likely to follow
through.
Now what I'd like you to do isidentify one social connection
that you can make or strengthenthis week.
Just one.
Just start small and then buildfrom there.
Maybe it's texting an oldfriend, maybe it's joining an
online support group, or it'sjust saying yes to that
invitation that you've beenavoiding.
(25:55):
Remember start small and startsomewhere.
And remember the journey of athousand miles begins with a
single footstep.
Now, if you find this podcast ishelping you live better with
Parkinson's and you want to helpme reach more people with this
kind of evidence-based content,I'd be so grateful.
If you consider supporting theshow, you can visit my Ko-fi
(26:16):
page at ko-ficom slashliveparkinsons so you can help
me keep this resource availableto everyone who needs it.
And hey, if you want to evendive deeper into some of the
strategies that I've been usingover the last 15 years and
you've heard me say spectacularlife and exceptional life of
Parkinson's then check out mybook with the exact title
(26:37):
Spectacular Life Four EssentialStrategies for Living with
Parkinson's.
It's packed with practicalaction plans, research
references and personal storiesthat build on everything that
we've talked about today.
Now here's what I want you toremember as you head into next
week.
Social isolation isn't yourdestiny with Parkinson's, and
neither is cognitive decline.
(26:57):
Every single day, you get tochoose connection over isolation
, engagement over withdrawal andspectacular over ordinary.
It's on how you choose yourfriendships, your family
connections, your coffee datesand phone calls and group
activities.
They're not just nice to have,they're medicine for your brain
(27:20):
and therapy for your soul, andthey're also a fuel for the kind
of living that makes life withParkinson's just one part of
your story, not the whole story.
So go out there and get yoursocial prescription filled.
Your brain's going to thank you, your heart will thank you and,
honestly, the people in yourlife will thank you too, because
connection isn't just good foryou, it's good for everyone
(27:43):
that's involved.
I want to thank you forlistening and remember stay
healthy, stay strong and, asalways, live your best life with
Parkinson's.
Thanks again, and I hope to seeyou soon.
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