November 15, 2025 • 46 mins
Are you searching for effective, accessible ways to manage Parkinson's symptoms while fostering a strong social community? This episode is a must-listen for anyone living with Parkinson's, their care partners, and healthcare professionals.
In this powerful interview on the Live Parkinson's - Live an Exceptional Life podcast, host Chris Kustanbauter sits down with Dr. Nina Mosier, co-founder of the life-changing Power for Parkinson's program.
✨ What You Will Learn in This Episode:
- The Origins of Power for Parkinson's: Hear the inspiring story behind the creation of this free and vital program, born from the mission to help people with PD live their best lives.
- Comprehensive Symptom Management: Discover how the program uses a multi-faceted approach to directly address common PD challenges. We dive into core components, including:
- Dance & Move Classes: Improving mobility and coordination.
- Vocal Components: Strengthening the voice and improving communication.
- Stretching, Balance, & Flexibility: Essential for fall prevention and daily function.
- The Power of Community: Learn about the profound social and emotional benefits of connecting with others who understand the journey, turning exercise into a shared, joyful experience.
If you are looking for Parkinson's exercises at home, free Parkinson's programs, or ways to improve quality of life with PD, Dr. Mosier provides actionable insights and resources.
🔗 Resources Mentioned & Calls to Action
Connect with Power for Parkinson's:
- Website: www.powerforparkinsons.org
- YouTube Channel: Find tons of free classes and exercises! Search Power for Parkinson's on YouTube.
Support the Live Parkinson's Mission:
- Stay Informed: Visit liveparkinsons.com to subscribe to our free monthly newsletter for the latest strategies, research, and Parkinson's insights!
- Support the Show: Help us continue to deliver high-quality, free content designed to help you live an exceptional life! Click the SUPPORT THE SHO
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.
Disclosure: I discuss and promote products in this podcast that pay me a small commission at no cost to you. I use the commissions to help support this podcast and my website Liveparkinsons.com. I make you aware of any affiliate links by adding AFFLIATE Link right beside the link. Thank you for supporting this podcast.
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_00 (00:13):
Hello and welcome to Live Parkinson's Live an
Exceptional Life.
I'm your host, ChrisKustenbotter, and I've been
living an exceptional life withParkinson's for the past 15
years.
And the mission of this podcastis to help as many people as
possible living with Parkinson'sto lead a great quality of life.
Today I'm honored to introduce avery special guest, Dr.
Nina Mosier.
And Dr.
Mosier is a dedicated leaderwith the Powerful Parkinson's
(00:36):
program.
It's an organization that hasbeen transforming lives through
free, accessible, exercise andwellness programs designed
specifically for people withParkinson's.
With her expertise and passion,she has helped countless
individuals discover the powerof movement, connection, and
resilience in their journey withParkinson's.
So in our conversation today,we'll dive into her work, The
(00:57):
Science Behind Exercise andCommunity, and how Parkin how
powerful for Parkinson's ismaking a global impact.
And I know you'll find herinsights both empowering and
practical as we continue toexplore what it means to live an
exceptional life withParkinson's.
Well, welcome, uh Dr.
Mojer.
SPEAKER_01 (01:14):
Well, thanks so much, Chris.
And you can call me Nina.
Um today.
I'm excited to have thisconversation.
SPEAKER_00 (01:24):
Oh, great.
Well, I want to start out withyour background.
Can you share what inspired youto transition from being an
internal medicine doctor toleading up the Power for
Parkinson's program?
SPEAKER_01 (01:36):
Sure.
Well, it was it was quite ajourney.
I kind of look at this as my ummy third, my third career, my
third act, because I practiceduh internal medicine for about
10 years.
And then when I had my kids, um,as they were getting a little
bit older, I it got a littlechallenging.
(01:58):
So I took off time to raise mykids.
And by the time my son, mysecond child, was in high school
and you know, very independent,I started looking for something
else to do.
And at that time, my dad wasreally struggling with his
Parkinson's, and one thing ledto another, and uh Power for
(02:19):
Parkinson's was born.
SPEAKER_00 (02:22):
Okay, so you mentioned your dad had
Parkinson's.
That's what I was gonna ask youabout.
How did his experience shape theimportance of exercise as part
of living well with Parkinson's?
SPEAKER_01 (02:33):
Yeah, so I think he really my dad had really had
Parkinson's, well, at least 15,probably longer years.
I wasn't diagnosed until youknow about um let's see, maybe
he was like seven years into it,but really had this progressive
(02:54):
decline and really I ended upseeing like the whole gamut.
And he had, if you name asymptom, he had he had it.
So um around that time uh he hadstarted, well, it was 2012, I
guess, when he had done a courseof the of the big program, and
he made dramatic progress.
(03:17):
And I just um, you know, justseeing him, like he was was able
to walk better, his mood wasbetter, he just seemed like just
everything seemed to beimproving.
But as soon as it was done, hedidn't really have a way to keep
it up.
And because he isn't wasn't notthe kind of person that was
(03:38):
self-motivated to exercise, itjust started to dwindle.
And we started exercise.
I tried to get him to do the bigprogram online on Skype because
we didn't live in the same city,and we kept it up for a while,
but it was really hard because Ihad seen and I always was a
believer in exercise.
And I'd done a lot of researcharound that time just trying to
(04:00):
see what was available forpeople with Parkinson's.
And there were a few studies atthe time, um, you know, talking
about forced exercise and how itreally can change the trajectory
of Parkinson's, but thereweren't that many resources out
there.
And he was in a big city inPhiladelphia.
I was in Austin, Texas, andneither city really had
(04:25):
sufficient resources for someonewith Parkinson's.
And that's when I startedbrainstorming Power for
Parkinson's.
SPEAKER_00 (04:33):
Okay, so how did that lead into then starting a
program from scratch?
So, you know, you saw thebenefits that your dad had, but
how did that translate to, wow,geez, I really need to start a
program to help other people aswell?
SPEAKER_01 (04:47):
I think just all the stars aligned.
I was just really ready to getback to, I wanted to work, I
wanted to do something.
And then in medicine, one of thethings that was always the thing
that was really the mostimportant to me is just the
people.
I was an internist, so I got toknow my patients, and I just
liked that that feeling working.
(05:09):
I didn't like necessarily loveall the other parts of medicine,
but that was really important tome.
And so this just seemed like mylike something I could really
connect to.
And then my a good friend ofmine, Susan Stahl, her father,
also had Parkinson's andactually had recently passed
away after many years.
You know, he was in his 80s, andwe had been friends for for
(05:32):
years.
Somehow I convinced her to geton board with me, and we just
started brainstorming.
We were at just at the perfecttime in our lives, and we were
able to pull it together with alot of support from community
members.
I was on the board, I was thevice president of the Capital
Area Parkinson Society at thattime because I was already
(05:54):
getting involved with the localorganization.
So I was, no, I could see whatthe benefits were.
I mean, I could see what theneeds were.
There was a there was a holethere.
And I just felt like we reallyhad the opportunity to fulfill
that deficit.
SPEAKER_00 (06:12):
Nice.
So can you tell me about theearly days?
How did you get started thenfrom the idea generation stage
to actual putting it intopractice and and getting people
to come and be part of theprogram?
SPEAKER_01 (06:25):
Yeah.
Well, uh, one of my roles at thelocal organization, uh Cap the
Capital Area Parkinson Society,was to bring in speakers and we
would have monthly uheducational events.
And so we had a it had beenaround for quite a while, so
we'd usually have at least 100to 130 people each month.
(06:47):
So we had an audience already.
We knew that there were peoplewith Parkinson's, you know, um
looking for resources.
And so that was a really helpfulsituation to be in.
And they were very supportive aswell for this new program.
(07:08):
And then we got three differentlocations were donated to us the
space to hold the classes, andwe had instructors.
We we fortunately met one of ourinstructors around the same time
who had just taken dance for PD,the course.
She's a longtime dancer, so sheand had a lot of experience in
the nonprofit sector.
(07:29):
So she helped us, you know,being in that community, and it
just uh we got a couple otherinstructors who are really
interested, longtime groupfitness instructors, and we kind
of trained them aboutParkinson's.
And as much as we knew and asreally knowing a lot about the
big program, because I hadworked so much with my father
(07:51):
with those exercises, usingtheir knowledge, it all kind of
came together.
And, you know, it it was anorganic process.
And we were really lucky.
No one, you know, everyoneworked for free, the space was
free, and then there were peoplethat were that I knew already
that were really excited aboutit.
SPEAKER_00 (08:11):
Oh, great.
Now, do you see a difference increating exercise programs for
people with Parkinson's versusthe I don't want to call it the
regular population, but peoplethat exercise on it on a daily
basis because there are, youknow, with symptoms and you
know, people have differentstruggles.
So so is the program designedwith different types of
exercises that other peoplemight not be involved in?
SPEAKER_01 (08:33):
Yeah, so I think that is a great question, and I
think it's really important thatum, you know, what we do with
power for Parkinson's is alwayssymptom directed.
And when I say symptom, so whatthe difference with Power for
Parkinson's versus maybe anotherclass and why it's important is
(08:58):
because all of our instructorshave a very thorough
understanding of Parkinson's.
And when the exercises, our leadinstructor always says, Lauren
Lewis, she is always says, Ididn't invent these exercises.
But the way she's like, anyonecan copy me, that's why we put
it out on YouTube.
She said, but the way you putthem together and how you
(09:21):
present them is different.
So a lot of what we work on isbuilding neuroplasticity, and
that means using differentexercises to develop these new
neural pathways, and also bytargeting the symptoms.
You may do a certain exerciselike in a regular class that you
(09:41):
don't know what it's fornecessarily.
But I think what's the beauty ofour program is that the people
with that you understand whyyou're doing an exercise, it's
motivating, and they're tiedtogether.
Like let's say we're working ongait.
So there's a lot of differentaspects of gait.
(10:04):
So we want to help overcomeshuffling, we want to overcome
bradykinesia.
Um, so we want to be able tolift your leg up higher, we want
to be able to swing your arms,opposite arms, and we want to
have increase our pace.
So the exercises are targeted inthat way, as opposed to saying,
okay, we're gonna build yourquads, or we're going to uh, you
(10:26):
know, we're doing it forspecific muscle group, or um,
and then also um, you know,we're not talking weight loss or
anything like that.
It's all about let's improvethese symptoms.
And all of our classes include acardio, I mean, not a cardio.
(10:47):
Well, yes, we do include cardio,but also a cognitive component.
So the exercises arecomplemented by some kind of
cognitive challenge.
So there's a lot of liketriggering the multitasking in
the brain.
SPEAKER_00 (11:04):
Yeah, we do I've I'm a part of two different
Parkinson's groups.
One's called momentum and theother one's called punch.
And but we do a lot of that aswell, where if you're doing an
exercise, maybe you're spellinga word forward and backwards
while you're doing it, oryou're, you know, you're
counting to 60 by threes orwhatever.
So I think it helps train us tothat.
Number one, it helps with ourcognitive function, but number
(11:26):
two, it helps us.
We're not we're doing exercisesthat help us in our daily lives
as well.
It's not just we're doing anexercise just to do an exercise.
And I think that's what you'resaying, and that's that's what I
really liked about the program.
SPEAKER_01 (11:38):
Yeah, exactly.
So we're not there to get, Imean, of course, we want people
to get strong, that's part ofit, but it's just building, you
know, the it's strength tomanage your symptoms.
So it's it's combining a lot ofdifferent aspects of exercise
(11:59):
together and in different ways.
We use a lot of patterns also inour classes.
So they're we're working inmemory and coordination.
So we're trying to target a lotof the issues that people with
Parkinson's do struggle with.
SPEAKER_00 (12:15):
So I guess the question I have is when you have
new people come into theprogram, I notice the groups
that I was in, a lot of timespeople are a little reluctant
because they think, well, thesepeople have been doing it for a
long time.
How do you get people maybe thathaven't exercised or they're
nervous about exercising to comeand feel comfortable and
participate in the group?
SPEAKER_01 (12:35):
Yeah.
That's been very, veryinteresting.
And we had a lot of naysayersearly on saying we couldn't do
that, but people wouldn't come.
They said if we offered ourclasses for free, people aren't
going to come.
And truly what happens is thatour community is so strong and
so warm and welcoming that wejust encourage everyone, and
(13:01):
there's a feeling that you dowhat you can.
And so we can't when someonewalks into the class, I mean,
getting to the class is is thehardest part, stepping in the
door.
But I would say, in general,once somebody walks into one of
our classes, they they come backbecause that you feel that sense
(13:23):
of community, and ourinstructors are so talented and
they're the way they cue people,and they're um anyone can be
successful.
And whether you are doing itwith a you know, big open arms,
big range of motion.
We have a gentleman who hasfrozen shoulder, but he still
(13:46):
does whatever he can.
And we're not ever looking forperfection, and we let people
know that as soon as they comein the door.
Like they're there to just, youknow, it's gonna take a little
time.
People have been there.
And we also have the other thingthat we do have is we call it
our hotline, and we actuallyanswer the phone.
We have a great our programcoordinator, Kevin Curtin, is
(14:09):
amazing.
He answers the phone, he'll talkto people, you know, kind of get
them in the right direction,whether it's on YouTube or in
person, and kind of guide themas to which class would be the
best and how to, you know, getstarted on a program.
You know, we and we see more andmore people because neurologists
now, even it's becoming more, Iwouldn't say mainstream, but
(14:34):
more and more doctors andneurologists are recognizing
that exercise truly is medicinefor someone with Parkinson.
So as soon as they're diagnosed,they're often in Austin, they're
sent to us.
The doctors know we're here, andwe have so many different
locations.
So we're very accessible.
And so they know that this issomething they need to do.
(14:56):
So they're they're ready to doit.
SPEAKER_00 (15:00):
And just to camaraderie, you mentioned
social interaction, and I Ithink that's one of the key
pieces too.
And the groups that Iparticipate in, we actually
we've become such close friendsthat we go out to breakfast once
a month and we do socialactivities together.
So it sounds like that's withyour power for Parkinson's group
that you've got you're buildingthis for a lack of a better
(15:20):
term, a family that really looksforward to helping each other
out.
SPEAKER_01 (15:25):
Yes.
Yeah, and it's amazing.
I mean, sounds like you do havethat experience, and just that
um having others that are kindof in this similar situation, it
just I mean, people are just sowarm and welcoming, and you
know, in this time in our worldthat's so divisive to come to a
(15:47):
class together, sharing this youknow, unusual, different
condition, same condition.
We don't talk politics, it's notnegative, it's very just a
supportive atmosphere.
And I think people feel, youknow, when you're first
diagnosed with Parkinson's, it'sshocking.
(16:10):
Like this is the end of my life.
But really, that doesn't have itdoesn't have to be that way.
And I think a lot of people havefound that you know, getting
involved in a group orexercising and feeling better
about yourself in general canreally help, you know, give you
a new lease on life.
(16:31):
You can reclaim who you are.
And I think that's reallyimportant.
SPEAKER_00 (16:36):
Yeah, exactly.
So caregivers are allowed toparticipate in your program as
well, is that correct?
And can you talk a little bitabout how that fits in?
Because I think that's an one ofthe pieces that often gets
forgotten, the caregiver, andyou know, that with all the
struggles that they go through.
SPEAKER_01 (16:51):
Well, I'm glad you brought that up because that
since the beginning has beenvery important to us.
And Susan, like I said, my myco-founder, she helped with her
father.
And I was a caregiver from afar,but you know, of course, I knew
the struggles because of mymother.
And so we could never forget thecaregiver.
So we always welcome thecaregivers or family member, a
(17:16):
friend, whoever that is,somebody, you know, they're open
to bringing somebody, but it'sso, and a lot do come.
Uh, but they also, you know,some people choose, like this is
when they're gonna go groceryshopping or their little respite
period or read a book.
So we just wanted to make surethat they felt part of it
because I think you and I knowlike Parkinson's has like a
(17:38):
disease of the family.
Everyone's impacted, whetherit's the spouse, the children,
the grandchildren, everybody.
So we try to get everybodyinvolved.
And I think we have a lot ofsocial events.
We have 11 locations currently,and so at each location we'll
have different events andparties and all kinds of things
(18:00):
throughout the year.
And we always encourage, youknow, them people to bring their
loved ones with them.
So it's really good experience.
SPEAKER_00 (18:12):
And you have volunteers as part of the
program as well to help out, isthat correct?
SPEAKER_01 (18:15):
Yeah, and that's really another key element of
our programming, and that's fromthe start, it's been essential
to manage our classes because wenot only are all our classes
free, there is, you know, peopledon't need any, they don't need
a formal, they don't need toprove to us that they have
Parkinson's, they don't need adoctor's note, they don't need
(18:38):
to have insurance, there's noinsurance involved.
And so they don't have to signup necessarily.
We tried to get people to signup, but they don't have to sign
up.
So we never know how many peopleare coming.
We don't necessarily so far wehave not put a cap on our
classes, but we could haveanywhere from, depending on the
location, 20 to 60 people in aclass.
(18:59):
And you know, some of our biggerlocations can get really full.
And we want it to be safe.
So most of our classes um haveare seated, the majority have
chairs for everybody, but wealways try to have a standing
section, and we want to havevolunteers to spot people, the
(19:20):
people because we really wantpeople to be able to stand if
they're if possible.
So we've we train ourvolunteers, they're very
dedicated, and our volunteersalso help with equipment and
they're very warm and welcoming,and they help us build the
community so they really feelpart of it, and many of them
have been with us for years.
(19:42):
Plus, we have greatrelationships with several
universities in our area.
There's uh this year we arereally proud because the uh
University of Texas just starteda student chapter of Power for
Parkinson's, and it started offwith a bang because we have over
40 students in that group.
So they help us.
(20:02):
We have uh two otheruniversities in the area that
send either like physicaltherapy, occupational therapy
students, and kinesiologystudents to help out.
So from all parts of the city,we have volunteers and then just
you know community members thatare interested in helping.
SPEAKER_00 (20:21):
Great.
Do people ask you how you canrun a free Power for Parkinson's
program?
How do you do that and offer itas a free service?
SPEAKER_01 (20:30):
Yeah, people ask us that all the time.
And early on, uh, we presentedthe World Parkinson's Congress,
or we had an we had a um poster.
And like I mentioned before,people couldn't believe that it
would really could really work.
But I mean it's hard to start,but we really rely on we're
(20:55):
almost fully communitysupported.
We have been since thebeginning, which means the
people that use our program,whether they're on YouTube or in
person, tend to support us indifferent ways, you know,
financially.
And then the locations have beendonated to us.
So that all of that funding goesback toward um, you know, mostly
(21:19):
for staff, which were really asmall staff, and for our
instructors.
It was it happened kind oforganically.
SPEAKER_00 (21:27):
How do you balance then you have oh, I'm sorry, you
have 11 locations in Austin, butthen you also have all these
YouTube subscribers that followyou all over the globe.
So how do you balance thebetween the two?
SPEAKER_01 (21:44):
Well, we're um we have a studio in our office, and
what happens is that the sameinstructors that are teaching
the in-person classes are onYouTube, and so they will often
teach their class and for theweek, and then they come into
the office and redo it.
(22:06):
So we never have a class that'sthe same.
So right now, Lauren Lewis andPolly Caprio are kind of our
regulars that are filming, andthey use these different
different patterns and will usedifferent themes or focus on a
specific symptom, and that's howthey develop their classes, and
they both are and well, really,everyone that works for us has
(22:30):
so much experience that they andthey're doing it every single
week, so they know how peoplerespond.
We recently kind of talked aboutit like we have a lab almost
because they can see what'ssuccessful, and sometimes we get
every now and then someone inYouTube is saying, Oh, this is
so hard, I can't keep up, andwe're like, Well, you just need
(22:53):
to practice because you you willget it.
It just takes a little time.
So, because we see that peoplecan everyone can be successful.
SPEAKER_00 (23:03):
And then you also, in in addition to exercise, you
also offer other programs aswell, right?
Voice and and other things.
Can you talk a little bit aboutthat?
SPEAKER_01 (23:11):
Sure.
So again, what I was mentioningfrom the beginning is that our
whole mission is to be symptomdirected.
And so that's you know, that'sthat's kind of a big umbrella if
you think about it.
So our I want to kind of focuson our YouTube uh first because
(23:32):
I think probably your audienceis not in Austin.
What we've done um there is justum we've added these, so we have
a rhythm and moves class, whichis a dance class primarily, or
dance moves, and that we alsohave that class here in Austin.
(23:53):
And then we have what else?
We have a relax and reset class,which is yoga, meditation,
stretching, and of course, allof those things are great for
people with Parkinson's, butwhen you think about it, we're
targeting symptoms.
So anxiety, depression,rigidity, all those things,
(24:16):
those are that's the reason forthat.
So it still is really part ofour mission and targeting
symptoms.
And then let's see, and thenhere in Austin, we also have a
ping pong class.
So I don't know how much you'veread about ping pong or if you
play at all, but again, thatworks on balance, it works on
(24:38):
flexibility and againstbradykinesia.
So it's really, you know, you'recrossing the midline, you have
to think, you're doing likemultiple things at one time.
So it's that multitasking, andthat has been a really fun
addition to what we do.
And then online we have somesinging classes or vocal
(25:01):
classes.
Kind of put a pause on itbecause our instructor um she
has isn't with us any longerbecause she had children and she
is taking time off.
But we're about to launch a newsinging class here in Austin or
vocal.
I'm trying to remember what wehad.
We're launching it in January.
That's gonna be an in-person.
(25:21):
But we also have move and shout,so that's one of our online
classes, and that is targeted tovocals, so increasing your vocal
strength.
So we're trying to really comefrom a lot of different angles.
SPEAKER_00 (25:38):
Yeah, that's what I really liked about your Powerful
Parkinson's program.
It encompasses everythingexercise, movement, flexibility,
and stretching, and then workingon your you know, voice
projection and and things likethat, you know, coming from a
person that's living withParkinson's.
Have you had uh people that havebeen with you from the beginning
that are still participating inthe program?
SPEAKER_01 (26:02):
We do.
We definitely do.
In fact, we just had a reallyspecial event over the weekend.
Uh it's called our creativeshowcase.
And what we did is, and again,this has to do with support and
social activities, but alsobecause we know people with
Parkinson's often develop thisnew creative streak.
(26:24):
And so we turned our office intoan art gallery, and we had, I
think we had about 12 uh visualartists that displayed their
artwork, and then about eightperformers, and it was it was
just an incredible communityexperience for everybody.
I mean, just we had a backingband, so four or five people
(26:47):
sang with the backing band wherethey had would never have that
opportunity normally.
We had a couple people tellstories and poetry, and just
seeing all the artists feelingso empowered was incredible.
And one of the reason I'mtelling that story is because
Michael Ray is one of those, oneof the people who was attending,
(27:10):
and his wife also, who had beenwith us since the very first
class, he came up to me and he'sjust like, Can you believe how
this has evolved?
Because he was reallyinstrumental in kind of helping
me develop that community, thatbig sense of community.
(27:30):
Because he wanted to start, hestarted a support or a lunch
group early on.
And he's like, We need this.
And you know, that was soanyway.
And what I wanted to mention,because I just want your
(27:52):
audience to know that by usingour YouTube channel, I think
people feel less alone becausewe do we premiere our videos.
So that means when we firstrelease them, you can chat, you
can talk to other people duringthat release.
And we have uh someone from myoffice who's usually on there,
(28:14):
and also another participantwho's in Rochester, New York,
who has taken on the facilitatorrole, which is Heidi, on our
YouTube channel.
And she has been exercising onYouTube.
She's probably missed twosessions since we started during
the pandemic.
And so she's on there, she knowsmore than we do, probably, about
(28:37):
the schedule, but she's alwayson there, and so there's a lot
of communication, and thenpeople leave us comments and we
answer every comment.
We have a lot of comments.
It's it's kind of a nonstopstream, but there's
communication, so we're alwaysresponding to people.
Wanted to actually I I savedifferent videos and different
comments, but do you think Icould read you one that we just
(29:00):
got?
SPEAKER_00 (29:01):
Oh, absolutely.
SPEAKER_01 (29:02):
Okay, well, this one, and we get these.
I can't tell you how many weget, but I love this one.
And this is from Sandra inCyprus.
And she said, I love thisworkout.
It reminds me how far I've comesince starting these exercises,
especially the rainbow leg nearthe end.
I used to be really unsteady andcouldn't stand on one leg, and
(29:25):
now I can do it easily.
It makes my day, so I go back tothis routine to remind myself
how far I've come.
Thank you, Lauren, and the restof your team.
I'm truly grateful.
SPEAKER_00 (29:36):
So that's incredible.
SPEAKER_01 (29:38):
These are the type of comments we get from places
all over the world, which don'ttypically have any Parkinson's
resources.
And so people are using thechannel every day and they feel
so connected that they sharethis information.
And this person in particular,we hear from her quite often,
(29:58):
and I know she feels verycomfortable in communicating
with us.
So there are still thatcommunity.
SPEAKER_00 (30:06):
Yeah, that's what's great.
You can see the the results ofhelping someone improve their
life.
It's it's it's reallyheartwarming.
I teach a pedaling forParkinson's class and uh
everybody in in the group whenwhen someone's not there we get
concerned and so we have thissense of community.
But one of the things I'venoticed just over I think I've
(30:27):
been doing it a year and a halfnow is just how much people have
improved.
And it's it's great to watch andthey push themselves further
than they think they can.
And then it when they think backand say wow when I started I
couldn't do this and now I cando do sprints or whatever it
happens to be and it's it reallyit's it's great to see them
light up and see that wow thishas really had an impact on my
(30:49):
life.
So that's that's great to hear.
SPEAKER_01 (30:51):
I know it's I'm so glad that you feel that way also
because we we see that so muchand just like and and I think
the other thing that's reallyincredible is for us when the
in-person classes like yourexperience um you know of course
one of the symptoms ofParkinson's is that mask faces
(31:13):
and fewer smiles but I cannottell you how many people we see
smiling.
SPEAKER_00 (31:19):
I mean you would think you wouldn't believe it's
a room full of people withParkinson's because people are
happy and laughing and it's it'sreally really moving and just so
much fun not to put you on thespot but can you think of
anybody that well you gave methe example with Sandra but
anybody else that's in yourlocal community that you've seen
(31:41):
just blossom from the time theystarted till now well there are
so many stories but one that isstriking happens to be one of
our our biggest supportersfinancial supporters but the
reason is his name is Joe and heand I know he wouldn't mind me
(32:02):
saying that but he moved toAustin from Ohio after his wife
passed and he moved here to bewith his family and when he
first came to class and he hadbeen going to classes um he had
always been kind of a fitnessbuff but when he first walked in
he was really shuffling using awalker you know not you couldn't
(32:25):
see a smile on his face and heyou know you could just see he
was like really focusing andtrying to improve and each week
he would come and you could seethe moves were getting easier
for not easier but smoother forhim and um sure enough you know
after about four to six weeksyou could just see like a more
(32:47):
like lightness in his stuff andhe was always happy to be there.
SPEAKER_01 (32:52):
And a few months after that he told me it's like
you know what I couldn't use mymouse for my computer when I got
to Austin.
And he's like after coming toyour classes and exercising
twice a week with you I'm usingmy mouse again and I could be on
(33:13):
the computer which is somethinghe loved.
And that was so transformativefor him and really well it turns
out it's transformative for allof us because he's such a big
supporter but it really I thinkthat's like such an amazing
example and something that Inever really thought about using
the mouse.
So I think that's uh was areally striking example.
(33:33):
But we see so many othersbecause we also see people who
come in who are really shufflingor using a walker or a cane and
after just a few weeks oftenthey'll end up forgetting they
even have one and just walk outof class they feel so strong and
secure.
So it's an occur it really is Ican't even tell you there's just
(33:57):
so many people that I see likethat.
And and I also see maybe you'veseen this as well with your
pedaling for Parkinson's butthere's a really a delay I don't
see people progress very quicklyat all.
I mean obviously we have youknow people are getting older so
of course you see there's thattoo that you're dealing with but
(34:18):
um we have so many people thatare I mean we have the whole age
the whole gamut of people but wehave several people in their 80s
and you wouldn't believe howgreat they're doing.
They blow me away.
SPEAKER_00 (34:33):
So how how would you say Power for Parkinson's is
different from maybe some of theother programs that just focus
on exercise that are out there.
SPEAKER_01 (34:41):
Yeah I think what we're doing is we uh well first
of all you know we have and thisis something I actually was
listening to your podcast aboutuh aerobic exercise which I
thought was great I love that umpodcast and I just have to say
that we really really pushcardio in our classes so I think
(35:06):
since we do teach the majorityof our classes are seated I
think that's one big differencealthough they can be modified
for standing but they arechallenging in a way that
because each class is differentwe're not doing the same moves
(35:27):
in any class we use alldifferent props we use different
music and the sequencing isevery time we're going to give
you something brand new andwe're pushing the concept of
neuroplasticity and that'sbehind everything that we do.
So it's just I think the wholeidea of learning something new
(35:50):
helps your brain so that's oneof the things that I think that
we have to offer plus you knowwe have the there's the
Parkinson's foundation exerciserecommendations and the Michael
J.
Fox exercise recommendations.
And if you take one class withpower for Parkinson's you're
(36:10):
gonna reach all those targets inone one hour class.
So um you know we work oncrossing the midline using
opposites lifting your legs andwe work help on rigidity
flexibility coordination allthose multitasking all of that
in one we also don't abilitygroup either so our classes are
(36:35):
designed for anybody withParkinson's so we're not saying
like oh you belong in group oneand you belong in group two this
is for everybody we're all inthe same boat.
We have students from UT thatcome and can't follow our
classes you know it takes a lotit's a lot of focus it's really
(36:58):
amazing so I think that's kindof what what makes us a little
different and we also are alwaysresponding to the latest
studies.
So you know there's been a lotof um a lot of um new research
on cardio aerobic activity Imean we've known that for a long
(37:22):
time we've always incorporatedit but we're doing it even more
and in different ways and youcan actually I was going to um
let you know that taking one ofour classes you will get your
cardio in because we put it inin everything and it's not like
(37:43):
and what I've seen over theyears from just the people that
I work with is that there arepeople that come in they're
diagnosed with Parkinson's andmaybe they've already been
exercising or they're a littlebit they're on the younger side
and they're have their balanceis still okay.
So they can do a lot like soyoung people often will even
(38:06):
start doing extreme sports andmarathons and triathlons and all
of that which of course is greatbut you don't have to to do
that.
And then there's sort of anothergroup of people that either
haven't exercised much in theirlives or their disease has
progressed and they're nervousbecause of their balance.
(38:27):
So the walking and running andbiking is not really something
they feel comfortable or can getas much cardio as they need.
And then of course then thereare people that are even older
that that's even more difficult.
So by doing the way we'vestructured our classes by having
(38:47):
them in a chair they're they'revery challenging you will get
your cardio in and so I thinkthat's that's all been really
helpful.
And that's something that wehope maybe your you and your
audience recognize that a powerfor Parkinson's is something a
little different that's outthere that's a free resource for
(39:10):
people with Parkinson's whereyou can get accomplished all
those goals and they'remodifiable.
So if you don't want to stayseated you can do those same
exercises standing.
And we often will show you howto do those I liked what you
said about neuroplasticity.
SPEAKER_00 (39:29):
I talk about that on the podcast pretty frequently
but you know it's I think when alot of times when people get
diagnosed with Parkinson's theythink oh I can't do this anymore
and it's I always think you canalways learn something.
I decided after seven years Iwanted to learn to play guitar
when it was a little bit of astruggle but I I just look at it
as I break it down into smallsteps and and then build on it.
(39:50):
And I think you can learnanything I've always I hated the
word I can't because I think ifyou really want to do it you you
can do it.
It's just you just have tofigure out how to do it and
neuroplasticity will help youbuild those you know neural
pathways that you know enableyou to continue to do what you
do.
So I'm glad you brought that upso yeah that was important.
SPEAKER_01 (40:09):
That sounds like you're really driven.
SPEAKER_00 (40:12):
Oh yeah I like well I've I well it went back to what
you said earlier about having asense of purpose.
When I had to stop working I Ifelt like maybe for a year I'd
lost my sense of purpose and Ihad a mentor and that's where
she mentioned about doing apodcast and she had me write a
book and I just it gave me asense of purpose again because
(40:35):
I've always liked to help peoplemy grandfather was a a family
doctor when I was growing up andthis was back in the late 60s
early 70s and I would go onhouse calls with him and there
was a lot of the people couldn'tafford to pay him and he he
didn't do it because he wasgetting paid.
He did it because he was wantedto help people and I've kind of
lived that my whole life and I Ithink I've I felt like I lost
(40:56):
that when I uh had to stopworking but uh you know
podcasting and talking to otherpeople and volunteering those
things you know really help giveyou a sense of purpose and
whatever somebody's passion isjust go after it if you want to
learn something new you can doit if if you have the mind to do
it just break it down into smallsteps.
SPEAKER_01 (41:16):
So well I love how you break things down for people
because I love the way yousummarize all the research and
latest studies for people you'reyou are doing exactly that
breaking it down into smallsteps though for your audience
and that's really cool that youhave that capability of doing
that.
It's a great service yeah it's agreat way of helping people get
(41:40):
through all the dense scientificliterature so if I could ask you
what gives you the most joy andfulfillment of working with
Power for Parkinson's I thinkjust seeing the the community
the way people respond and howempowered people become I just
it makes me feel good andinspired every single day.
(42:04):
And I think that's the way it isfor our whole staff sometimes
we're we're working and tryingto get a lot of stuff done
behind the scenes but we alwaystry to go to a couple classes a
week and it's just you walk inand you just know that you're
helping people and it just it'sa great feeling.
SPEAKER_00 (42:23):
And I think that there's a lot of hope for people
Parkinson's oh absolutely so ifyou could have just a couple key
messages on somebody that justgot diagnosed or maybe they've
been living with Parkinson's andthey feel isolated or what would
you tell them?
SPEAKER_01 (42:38):
Well I would tell them that don't give up hope and
that staying engaged socialbeing social trying to in
whatever capacity be aroundpeople and stay active and I
would invite them to use ourYouTube channel because that
(42:59):
will help and get into theunderstand the movement and if
there's something in their areatry to get involved in a group
take a course do something thatkeeps your mind active I think
that would be the most importantthing.
Okay great and we also I want tooh go ahead I just wanted to
(43:19):
just put in a little plugbecause we're about to launch a
uh a virtual support group andthat will be pretty soon because
we've had a lot of requests forthat so if anyone's interested
and just wants to have anopportunity to talk with others
could be from anywhere we willbe having that soon so they can
(43:41):
sign up on our on our websiteget our newsletter we have a
weekly newsletter I know you dotoo we try not to bombard people
but just so they know what'sgoing on.
SPEAKER_00 (43:52):
Great so if people wanted to get in touch with
Power for Parkinson's can tellus what your YouTube what they
would look up on YouTube, whatyour website would be and if
they wanted to support you aswell.
SPEAKER_01 (44:03):
Okay.
So it's pretty easy you caneither go to our website which
is www.power for fourparkinsonsdot org or on YouTube they can
go just look up power forParkinson's words YouTube slash
power for Parkinson's.
We also have a Spanish channelwhich I didn't mention earlier
(44:26):
uh but as we try to reach asmany people as possible with
Parkinson's that is our goalthis is something that we've
just launched in the last year.
So we have a designated YouTubechannel for people who speak
Spanish and that's Power forParkinson's in español.
And our social channels onFacebook and Instagram and
(44:47):
LinkedIn are extremely activealmost a hundred thousand people
following us on there and wepost really fun videos on there
as well so there's a lot of waysto get in touch and like I
mentioned our hotline our phonenumbers on our website if there
are any questions people cangive us a call.
SPEAKER_00 (45:08):
And I really like that you get back you respond to
all comments I think that'sthat's great and I think it's
very important it it makespeople feel like they're
appreciated and someone'slistening to what they have to
say.
Yeah well we're here for youwe're here for anyone who has PD
and we're ready to help out andguide you you know in any way we
(45:28):
can so I want to thank you somuch for being on today I want
to thank you so much for beingon today and I I want to ask
people to go and visit yourwebsite visit your YouTube
powerforparkinsons.org and go tothe YouTube channel and
participate in the classes thatare online and if you're in the
Austin Texas area then show upand participate and you'll feel
(45:53):
you'll get a great sense ofcommunity.
So I want to thank you again forbeing on the program I really
appreciate it.
SPEAKER_01 (45:59):
Well thank you so much for what you're doing and I
really appreciate theopportunity all right well
thanks and uh hope everybody hasa great weekend and thanks for
listening.
Thanks by the way
Hello and welcome to Live Parkinson's Live an
Exceptional Life.
I'm your host, ChrisKustenbotter, and I've been
living an exceptional life withParkinson's for the past 15
years.
And the mission of this podcastis to help as many people as
possible living with Parkinson'sto lead a great quality of life.
Today I'm honored to introduce avery special guest, Dr.
Nina Mosier.
And Dr.
Mosier is a dedicated leaderwith the Powerful Parkinson's
(00:36):
program.
It's an organization that hasbeen transforming lives through
free, accessible, exercise andwellness programs designed
specifically for people withParkinson's.
With her expertise and passion,she has helped countless
individuals discover the powerof movement, connection, and
resilience in their journey withParkinson's.
So in our conversation today,we'll dive into her work, The
(00:57):
Science Behind Exercise andCommunity, and how Parkin how
powerful for Parkinson's ismaking a global impact.
And I know you'll find herinsights both empowering and
practical as we continue toexplore what it means to live an
exceptional life withParkinson's.
Well, welcome, uh Dr.
Mojer.
SPEAKER_01 (01:14):
Well, thanks so much, Chris.
And you can call me Nina.
Um today.
I'm excited to have thisconversation.
SPEAKER_00 (01:24):
Oh, great.
Well, I want to start out withyour background.
Can you share what inspired youto transition from being an
internal medicine doctor toleading up the Power for
Parkinson's program?
SPEAKER_01 (01:36):
Sure.
Well, it was it was quite ajourney.
I kind of look at this as my ummy third, my third career, my
third act, because I practiceduh internal medicine for about
10 years.
And then when I had my kids, um,as they were getting a little
bit older, I it got a littlechallenging.
(01:58):
So I took off time to raise mykids.
And by the time my son, mysecond child, was in high school
and you know, very independent,I started looking for something
else to do.
And at that time, my dad wasreally struggling with his
Parkinson's, and one thing ledto another, and uh Power for
(02:19):
Parkinson's was born.
SPEAKER_00 (02:22):
Okay, so you mentioned your dad had
Parkinson's.
That's what I was gonna ask youabout.
How did his experience shape theimportance of exercise as part
of living well with Parkinson's?
SPEAKER_01 (02:33):
Yeah, so I think he really my dad had really had
Parkinson's, well, at least 15,probably longer years.
I wasn't diagnosed until youknow about um let's see, maybe
he was like seven years into it,but really had this progressive
(02:54):
decline and really I ended upseeing like the whole gamut.
And he had, if you name asymptom, he had he had it.
So um around that time uh he hadstarted, well, it was 2012, I
guess, when he had done a courseof the of the big program, and
he made dramatic progress.
(03:17):
And I just um, you know, justseeing him, like he was was able
to walk better, his mood wasbetter, he just seemed like just
everything seemed to beimproving.
But as soon as it was done, hedidn't really have a way to keep
it up.
And because he isn't wasn't notthe kind of person that was
(03:38):
self-motivated to exercise, itjust started to dwindle.
And we started exercise.
I tried to get him to do the bigprogram online on Skype because
we didn't live in the same city,and we kept it up for a while,
but it was really hard because Ihad seen and I always was a
believer in exercise.
And I'd done a lot of researcharound that time just trying to
(04:00):
see what was available forpeople with Parkinson's.
And there were a few studies atthe time, um, you know, talking
about forced exercise and how itreally can change the trajectory
of Parkinson's, but thereweren't that many resources out
there.
And he was in a big city inPhiladelphia.
I was in Austin, Texas, andneither city really had
(04:25):
sufficient resources for someonewith Parkinson's.
And that's when I startedbrainstorming Power for
Parkinson's.
SPEAKER_00 (04:33):
Okay, so how did that lead into then starting a
program from scratch?
So, you know, you saw thebenefits that your dad had, but
how did that translate to, wow,geez, I really need to start a
program to help other people aswell?
SPEAKER_01 (04:47):
I think just all the stars aligned.
I was just really ready to getback to, I wanted to work, I
wanted to do something.
And then in medicine, one of thethings that was always the thing
that was really the mostimportant to me is just the
people.
I was an internist, so I got toknow my patients, and I just
liked that that feeling working.
(05:09):
I didn't like necessarily loveall the other parts of medicine,
but that was really important tome.
And so this just seemed like mylike something I could really
connect to.
And then my a good friend ofmine, Susan Stahl, her father,
also had Parkinson's andactually had recently passed
away after many years.
You know, he was in his 80s, andwe had been friends for for
(05:32):
years.
Somehow I convinced her to geton board with me, and we just
started brainstorming.
We were at just at the perfecttime in our lives, and we were
able to pull it together with alot of support from community
members.
I was on the board, I was thevice president of the Capital
Area Parkinson Society at thattime because I was already
(05:54):
getting involved with the localorganization.
So I was, no, I could see whatthe benefits were.
I mean, I could see what theneeds were.
There was a there was a holethere.
And I just felt like we reallyhad the opportunity to fulfill
that deficit.
SPEAKER_00 (06:12):
Nice.
So can you tell me about theearly days?
How did you get started thenfrom the idea generation stage
to actual putting it intopractice and and getting people
to come and be part of theprogram?
SPEAKER_01 (06:25):
Yeah.
Well, uh, one of my roles at thelocal organization, uh Cap the
Capital Area Parkinson Society,was to bring in speakers and we
would have monthly uheducational events.
And so we had a it had beenaround for quite a while, so
we'd usually have at least 100to 130 people each month.
(06:47):
So we had an audience already.
We knew that there were peoplewith Parkinson's, you know, um
looking for resources.
And so that was a really helpfulsituation to be in.
And they were very supportive aswell for this new program.
(07:08):
And then we got three differentlocations were donated to us the
space to hold the classes, andwe had instructors.
We we fortunately met one of ourinstructors around the same time
who had just taken dance for PD,the course.
She's a longtime dancer, so sheand had a lot of experience in
the nonprofit sector.
(07:29):
So she helped us, you know,being in that community, and it
just uh we got a couple otherinstructors who are really
interested, longtime groupfitness instructors, and we kind
of trained them aboutParkinson's.
And as much as we knew and asreally knowing a lot about the
big program, because I hadworked so much with my father
(07:51):
with those exercises, usingtheir knowledge, it all kind of
came together.
And, you know, it it was anorganic process.
And we were really lucky.
No one, you know, everyoneworked for free, the space was
free, and then there were peoplethat were that I knew already
that were really excited aboutit.
SPEAKER_00 (08:11):
Oh, great.
Now, do you see a difference increating exercise programs for
people with Parkinson's versusthe I don't want to call it the
regular population, but peoplethat exercise on it on a daily
basis because there are, youknow, with symptoms and you
know, people have differentstruggles.
So so is the program designedwith different types of
exercises that other peoplemight not be involved in?
SPEAKER_01 (08:33):
Yeah, so I think that is a great question, and I
think it's really important thatum, you know, what we do with
power for Parkinson's is alwayssymptom directed.
And when I say symptom, so whatthe difference with Power for
Parkinson's versus maybe anotherclass and why it's important is
(08:58):
because all of our instructorshave a very thorough
understanding of Parkinson's.
And when the exercises, our leadinstructor always says, Lauren
Lewis, she is always says, Ididn't invent these exercises.
But the way she's like, anyonecan copy me, that's why we put
it out on YouTube.
She said, but the way you putthem together and how you
(09:21):
present them is different.
So a lot of what we work on isbuilding neuroplasticity, and
that means using differentexercises to develop these new
neural pathways, and also bytargeting the symptoms.
You may do a certain exerciselike in a regular class that you
(09:41):
don't know what it's fornecessarily.
But I think what's the beauty ofour program is that the people
with that you understand whyyou're doing an exercise, it's
motivating, and they're tiedtogether.
Like let's say we're working ongait.
So there's a lot of differentaspects of gait.
(10:04):
So we want to help overcomeshuffling, we want to overcome
bradykinesia.
Um, so we want to be able tolift your leg up higher, we want
to be able to swing your arms,opposite arms, and we want to
have increase our pace.
So the exercises are targeted inthat way, as opposed to saying,
okay, we're gonna build yourquads, or we're going to uh, you
(10:26):
know, we're doing it forspecific muscle group, or um,
and then also um, you know,we're not talking weight loss or
anything like that.
It's all about let's improvethese symptoms.
And all of our classes include acardio, I mean, not a cardio.
(10:47):
Well, yes, we do include cardio,but also a cognitive component.
So the exercises arecomplemented by some kind of
cognitive challenge.
So there's a lot of liketriggering the multitasking in
the brain.
SPEAKER_00 (11:04):
Yeah, we do I've I'm a part of two different
Parkinson's groups.
One's called momentum and theother one's called punch.
And but we do a lot of that aswell, where if you're doing an
exercise, maybe you're spellinga word forward and backwards
while you're doing it, oryou're, you know, you're
counting to 60 by threes orwhatever.
So I think it helps train us tothat.
Number one, it helps with ourcognitive function, but number
(11:26):
two, it helps us.
We're not we're doing exercisesthat help us in our daily lives
as well.
It's not just we're doing anexercise just to do an exercise.
And I think that's what you'resaying, and that's that's what I
really liked about the program.
SPEAKER_01 (11:38):
Yeah, exactly.
So we're not there to get, Imean, of course, we want people
to get strong, that's part ofit, but it's just building, you
know, the it's strength tomanage your symptoms.
So it's it's combining a lot ofdifferent aspects of exercise
(11:59):
together and in different ways.
We use a lot of patterns also inour classes.
So they're we're working inmemory and coordination.
So we're trying to target a lotof the issues that people with
Parkinson's do struggle with.
SPEAKER_00 (12:15):
So I guess the question I have is when you have
new people come into theprogram, I notice the groups
that I was in, a lot of timespeople are a little reluctant
because they think, well, thesepeople have been doing it for a
long time.
How do you get people maybe thathaven't exercised or they're
nervous about exercising to comeand feel comfortable and
participate in the group?
SPEAKER_01 (12:35):
Yeah.
That's been very, veryinteresting.
And we had a lot of naysayersearly on saying we couldn't do
that, but people wouldn't come.
They said if we offered ourclasses for free, people aren't
going to come.
And truly what happens is thatour community is so strong and
so warm and welcoming that wejust encourage everyone, and
(13:01):
there's a feeling that you dowhat you can.
And so we can't when someonewalks into the class, I mean,
getting to the class is is thehardest part, stepping in the
door.
But I would say, in general,once somebody walks into one of
our classes, they they come backbecause that you feel that sense
(13:23):
of community, and ourinstructors are so talented and
they're the way they cue people,and they're um anyone can be
successful.
And whether you are doing itwith a you know, big open arms,
big range of motion.
We have a gentleman who hasfrozen shoulder, but he still
(13:46):
does whatever he can.
And we're not ever looking forperfection, and we let people
know that as soon as they comein the door.
Like they're there to just, youknow, it's gonna take a little
time.
People have been there.
And we also have the other thingthat we do have is we call it
our hotline, and we actuallyanswer the phone.
We have a great our programcoordinator, Kevin Curtin, is
(14:09):
amazing.
He answers the phone, he'll talkto people, you know, kind of get
them in the right direction,whether it's on YouTube or in
person, and kind of guide themas to which class would be the
best and how to, you know, getstarted on a program.
You know, we and we see more andmore people because neurologists
now, even it's becoming more, Iwouldn't say mainstream, but
(14:34):
more and more doctors andneurologists are recognizing
that exercise truly is medicinefor someone with Parkinson.
So as soon as they're diagnosed,they're often in Austin, they're
sent to us.
The doctors know we're here, andwe have so many different
locations.
So we're very accessible.
And so they know that this issomething they need to do.
(14:56):
So they're they're ready to doit.
SPEAKER_00 (15:00):
And just to camaraderie, you mentioned
social interaction, and I Ithink that's one of the key
pieces too.
And the groups that Iparticipate in, we actually
we've become such close friendsthat we go out to breakfast once
a month and we do socialactivities together.
So it sounds like that's withyour power for Parkinson's group
that you've got you're buildingthis for a lack of a better
(15:20):
term, a family that really looksforward to helping each other
out.
SPEAKER_01 (15:25):
Yes.
Yeah, and it's amazing.
I mean, sounds like you do havethat experience, and just that
um having others that are kindof in this similar situation, it
just I mean, people are just sowarm and welcoming, and you
know, in this time in our worldthat's so divisive to come to a
(15:47):
class together, sharing this youknow, unusual, different
condition, same condition.
We don't talk politics, it's notnegative, it's very just a
supportive atmosphere.
And I think people feel, youknow, when you're first
diagnosed with Parkinson's, it'sshocking.
(16:10):
Like this is the end of my life.
But really, that doesn't have itdoesn't have to be that way.
And I think a lot of people havefound that you know, getting
involved in a group orexercising and feeling better
about yourself in general canreally help, you know, give you
a new lease on life.
(16:31):
You can reclaim who you are.
And I think that's reallyimportant.
SPEAKER_00 (16:36):
Yeah, exactly.
So caregivers are allowed toparticipate in your program as
well, is that correct?
And can you talk a little bitabout how that fits in?
Because I think that's an one ofthe pieces that often gets
forgotten, the caregiver, andyou know, that with all the
struggles that they go through.
SPEAKER_01 (16:51):
Well, I'm glad you brought that up because that
since the beginning has beenvery important to us.
And Susan, like I said, my myco-founder, she helped with her
father.
And I was a caregiver from afar,but you know, of course, I knew
the struggles because of mymother.
And so we could never forget thecaregiver.
So we always welcome thecaregivers or family member, a
(17:16):
friend, whoever that is,somebody, you know, they're open
to bringing somebody, but it'sso, and a lot do come.
Uh, but they also, you know,some people choose, like this is
when they're gonna go groceryshopping or their little respite
period or read a book.
So we just wanted to make surethat they felt part of it
because I think you and I knowlike Parkinson's has like a
(17:38):
disease of the family.
Everyone's impacted, whetherit's the spouse, the children,
the grandchildren, everybody.
So we try to get everybodyinvolved.
And I think we have a lot ofsocial events.
We have 11 locations currently,and so at each location we'll
have different events andparties and all kinds of things
(18:00):
throughout the year.
And we always encourage, youknow, them people to bring their
loved ones with them.
So it's really good experience.
SPEAKER_00 (18:12):
And you have volunteers as part of the
program as well to help out, isthat correct?
SPEAKER_01 (18:15):
Yeah, and that's really another key element of
our programming, and that's fromthe start, it's been essential
to manage our classes because wenot only are all our classes
free, there is, you know, peopledon't need any, they don't need
a formal, they don't need toprove to us that they have
Parkinson's, they don't need adoctor's note, they don't need
(18:38):
to have insurance, there's noinsurance involved.
And so they don't have to signup necessarily.
We tried to get people to signup, but they don't have to sign
up.
So we never know how many peopleare coming.
We don't necessarily so far wehave not put a cap on our
classes, but we could haveanywhere from, depending on the
location, 20 to 60 people in aclass.
(18:59):
And you know, some of our biggerlocations can get really full.
And we want it to be safe.
So most of our classes um haveare seated, the majority have
chairs for everybody, but wealways try to have a standing
section, and we want to havevolunteers to spot people, the
(19:20):
people because we really wantpeople to be able to stand if
they're if possible.
So we've we train ourvolunteers, they're very
dedicated, and our volunteersalso help with equipment and
they're very warm and welcoming,and they help us build the
community so they really feelpart of it, and many of them
have been with us for years.
(19:42):
Plus, we have greatrelationships with several
universities in our area.
There's uh this year we arereally proud because the uh
University of Texas just starteda student chapter of Power for
Parkinson's, and it started offwith a bang because we have over
40 students in that group.
So they help us.
(20:02):
We have uh two otheruniversities in the area that
send either like physicaltherapy, occupational therapy
students, and kinesiologystudents to help out.
So from all parts of the city,we have volunteers and then just
you know community members thatare interested in helping.
SPEAKER_00 (20:21):
Great.
Do people ask you how you canrun a free Power for Parkinson's
program?
How do you do that and offer itas a free service?
SPEAKER_01 (20:30):
Yeah, people ask us that all the time.
And early on, uh, we presentedthe World Parkinson's Congress,
or we had an we had a um poster.
And like I mentioned before,people couldn't believe that it
would really could really work.
But I mean it's hard to start,but we really rely on we're
(20:55):
almost fully communitysupported.
We have been since thebeginning, which means the
people that use our program,whether they're on YouTube or in
person, tend to support us indifferent ways, you know,
financially.
And then the locations have beendonated to us.
So that all of that funding goesback toward um, you know, mostly
(21:19):
for staff, which were really asmall staff, and for our
instructors.
It was it happened kind oforganically.
SPEAKER_00 (21:27):
How do you balance then you have oh, I'm sorry, you
have 11 locations in Austin, butthen you also have all these
YouTube subscribers that followyou all over the globe.
So how do you balance thebetween the two?
SPEAKER_01 (21:44):
Well, we're um we have a studio in our office, and
what happens is that the sameinstructors that are teaching
the in-person classes are onYouTube, and so they will often
teach their class and for theweek, and then they come into
the office and redo it.
(22:06):
So we never have a class that'sthe same.
So right now, Lauren Lewis andPolly Caprio are kind of our
regulars that are filming, andthey use these different
different patterns and will usedifferent themes or focus on a
specific symptom, and that's howthey develop their classes, and
they both are and well, really,everyone that works for us has
(22:30):
so much experience that they andthey're doing it every single
week, so they know how peoplerespond.
We recently kind of talked aboutit like we have a lab almost
because they can see what'ssuccessful, and sometimes we get
every now and then someone inYouTube is saying, Oh, this is
so hard, I can't keep up, andwe're like, Well, you just need
(22:53):
to practice because you you willget it.
It just takes a little time.
So, because we see that peoplecan everyone can be successful.
SPEAKER_00 (23:03):
And then you also, in in addition to exercise, you
also offer other programs aswell, right?
Voice and and other things.
Can you talk a little bit aboutthat?
SPEAKER_01 (23:11):
Sure.
So again, what I was mentioningfrom the beginning is that our
whole mission is to be symptomdirected.
And so that's you know, that'sthat's kind of a big umbrella if
you think about it.
So our I want to kind of focuson our YouTube uh first because
(23:32):
I think probably your audienceis not in Austin.
What we've done um there is justum we've added these, so we have
a rhythm and moves class, whichis a dance class primarily, or
dance moves, and that we alsohave that class here in Austin.
(23:53):
And then we have what else?
We have a relax and reset class,which is yoga, meditation,
stretching, and of course, allof those things are great for
people with Parkinson's, butwhen you think about it, we're
targeting symptoms.
So anxiety, depression,rigidity, all those things,
(24:16):
those are that's the reason forthat.
So it still is really part ofour mission and targeting
symptoms.
And then let's see, and thenhere in Austin, we also have a
ping pong class.
So I don't know how much you'veread about ping pong or if you
play at all, but again, thatworks on balance, it works on
(24:38):
flexibility and againstbradykinesia.
So it's really, you know, you'recrossing the midline, you have
to think, you're doing likemultiple things at one time.
So it's that multitasking, andthat has been a really fun
addition to what we do.
And then online we have somesinging classes or vocal
(25:01):
classes.
Kind of put a pause on itbecause our instructor um she
has isn't with us any longerbecause she had children and she
is taking time off.
But we're about to launch a newsinging class here in Austin or
vocal.
I'm trying to remember what wehad.
We're launching it in January.
That's gonna be an in-person.
(25:21):
But we also have move and shout,so that's one of our online
classes, and that is targeted tovocals, so increasing your vocal
strength.
So we're trying to really comefrom a lot of different angles.
SPEAKER_00 (25:38):
Yeah, that's what I really liked about your Powerful
Parkinson's program.
It encompasses everythingexercise, movement, flexibility,
and stretching, and then workingon your you know, voice
projection and and things likethat, you know, coming from a
person that's living withParkinson's.
Have you had uh people that havebeen with you from the beginning
that are still participating inthe program?
SPEAKER_01 (26:02):
We do.
We definitely do.
In fact, we just had a reallyspecial event over the weekend.
Uh it's called our creativeshowcase.
And what we did is, and again,this has to do with support and
social activities, but alsobecause we know people with
Parkinson's often develop thisnew creative streak.
(26:24):
And so we turned our office intoan art gallery, and we had, I
think we had about 12 uh visualartists that displayed their
artwork, and then about eightperformers, and it was it was
just an incredible communityexperience for everybody.
I mean, just we had a backingband, so four or five people
(26:47):
sang with the backing band wherethey had would never have that
opportunity normally.
We had a couple people tellstories and poetry, and just
seeing all the artists feelingso empowered was incredible.
And one of the reason I'mtelling that story is because
Michael Ray is one of those, oneof the people who was attending,
(27:10):
and his wife also, who had beenwith us since the very first
class, he came up to me and he'sjust like, Can you believe how
this has evolved?
Because he was reallyinstrumental in kind of helping
me develop that community, thatbig sense of community.
(27:30):
Because he wanted to start, hestarted a support or a lunch
group early on.
And he's like, We need this.
And you know, that was soanyway.
And what I wanted to mention,because I just want your
(27:52):
audience to know that by usingour YouTube channel, I think
people feel less alone becausewe do we premiere our videos.
So that means when we firstrelease them, you can chat, you
can talk to other people duringthat release.
And we have uh someone from myoffice who's usually on there,
(28:14):
and also another participantwho's in Rochester, New York,
who has taken on the facilitatorrole, which is Heidi, on our
YouTube channel.
And she has been exercising onYouTube.
She's probably missed twosessions since we started during
the pandemic.
And so she's on there, she knowsmore than we do, probably, about
(28:37):
the schedule, but she's alwayson there, and so there's a lot
of communication, and thenpeople leave us comments and we
answer every comment.
We have a lot of comments.
It's it's kind of a nonstopstream, but there's
communication, so we're alwaysresponding to people.
Wanted to actually I I savedifferent videos and different
comments, but do you think Icould read you one that we just
(29:00):
got?
SPEAKER_00 (29:01):
Oh, absolutely.
SPEAKER_01 (29:02):
Okay, well, this one, and we get these.
I can't tell you how many weget, but I love this one.
And this is from Sandra inCyprus.
And she said, I love thisworkout.
It reminds me how far I've comesince starting these exercises,
especially the rainbow leg nearthe end.
I used to be really unsteady andcouldn't stand on one leg, and
(29:25):
now I can do it easily.
It makes my day, so I go back tothis routine to remind myself
how far I've come.
Thank you, Lauren, and the restof your team.
I'm truly grateful.
SPEAKER_00 (29:36):
So that's incredible.
SPEAKER_01 (29:38):
These are the type of comments we get from places
all over the world, which don'ttypically have any Parkinson's
resources.
And so people are using thechannel every day and they feel
so connected that they sharethis information.
And this person in particular,we hear from her quite often,
(29:58):
and I know she feels verycomfortable in communicating
with us.
So there are still thatcommunity.
SPEAKER_00 (30:06):
Yeah, that's what's great.
You can see the the results ofhelping someone improve their
life.
It's it's it's reallyheartwarming.
I teach a pedaling forParkinson's class and uh
everybody in in the group whenwhen someone's not there we get
concerned and so we have thissense of community.
But one of the things I'venoticed just over I think I've
(30:27):
been doing it a year and a halfnow is just how much people have
improved.
And it's it's great to watch andthey push themselves further
than they think they can.
And then it when they think backand say wow when I started I
couldn't do this and now I cando do sprints or whatever it
happens to be and it's it reallyit's it's great to see them
light up and see that wow thishas really had an impact on my
(30:49):
life.
So that's that's great to hear.
SPEAKER_01 (30:51):
I know it's I'm so glad that you feel that way also
because we we see that so muchand just like and and I think
the other thing that's reallyincredible is for us when the
in-person classes like yourexperience um you know of course
one of the symptoms ofParkinson's is that mask faces
(31:13):
and fewer smiles but I cannottell you how many people we see
smiling.
SPEAKER_00 (31:19):
I mean you would think you wouldn't believe it's
a room full of people withParkinson's because people are
happy and laughing and it's it'sreally really moving and just so
much fun not to put you on thespot but can you think of
anybody that well you gave methe example with Sandra but
anybody else that's in yourlocal community that you've seen
(31:41):
just blossom from the time theystarted till now well there are
so many stories but one that isstriking happens to be one of
our our biggest supportersfinancial supporters but the
reason is his name is Joe and heand I know he wouldn't mind me
(32:02):
saying that but he moved toAustin from Ohio after his wife
passed and he moved here to bewith his family and when he
first came to class and he hadbeen going to classes um he had
always been kind of a fitnessbuff but when he first walked in
he was really shuffling using awalker you know not you couldn't
(32:25):
see a smile on his face and heyou know you could just see he
was like really focusing andtrying to improve and each week
he would come and you could seethe moves were getting easier
for not easier but smoother forhim and um sure enough you know
after about four to six weeksyou could just see like a more
(32:47):
like lightness in his stuff andhe was always happy to be there.
SPEAKER_01 (32:52):
And a few months after that he told me it's like
you know what I couldn't use mymouse for my computer when I got
to Austin.
And he's like after coming toyour classes and exercising
twice a week with you I'm usingmy mouse again and I could be on
(33:13):
the computer which is somethinghe loved.
And that was so transformativefor him and really well it turns
out it's transformative for allof us because he's such a big
supporter but it really I thinkthat's like such an amazing
example and something that Inever really thought about using
the mouse.
So I think that's uh was areally striking example.
(33:33):
But we see so many othersbecause we also see people who
come in who are really shufflingor using a walker or a cane and
after just a few weeks oftenthey'll end up forgetting they
even have one and just walk outof class they feel so strong and
secure.
So it's an occur it really is Ican't even tell you there's just
(33:57):
so many people that I see likethat.
And and I also see maybe you'veseen this as well with your
pedaling for Parkinson's butthere's a really a delay I don't
see people progress very quicklyat all.
I mean obviously we have youknow people are getting older so
of course you see there's thattoo that you're dealing with but
(34:18):
um we have so many people thatare I mean we have the whole age
the whole gamut of people but wehave several people in their 80s
and you wouldn't believe howgreat they're doing.
They blow me away.
SPEAKER_00 (34:33):
So how how would you say Power for Parkinson's is
different from maybe some of theother programs that just focus
on exercise that are out there.
SPEAKER_01 (34:41):
Yeah I think what we're doing is we uh well first
of all you know we have and thisis something I actually was
listening to your podcast aboutuh aerobic exercise which I
thought was great I love that umpodcast and I just have to say
that we really really pushcardio in our classes so I think
(35:06):
since we do teach the majorityof our classes are seated I
think that's one big differencealthough they can be modified
for standing but they arechallenging in a way that
because each class is differentwe're not doing the same moves
(35:27):
in any class we use alldifferent props we use different
music and the sequencing isevery time we're going to give
you something brand new andwe're pushing the concept of
neuroplasticity and that'sbehind everything that we do.
So it's just I think the wholeidea of learning something new
(35:50):
helps your brain so that's oneof the things that I think that
we have to offer plus you knowwe have the there's the
Parkinson's foundation exerciserecommendations and the Michael
J.
Fox exercise recommendations.
And if you take one class withpower for Parkinson's you're
(36:10):
gonna reach all those targets inone one hour class.
So um you know we work oncrossing the midline using
opposites lifting your legs andwe work help on rigidity
flexibility coordination allthose multitasking all of that
in one we also don't abilitygroup either so our classes are
(36:35):
designed for anybody withParkinson's so we're not saying
like oh you belong in group oneand you belong in group two this
is for everybody we're all inthe same boat.
We have students from UT thatcome and can't follow our
classes you know it takes a lotit's a lot of focus it's really
(36:58):
amazing so I think that's kindof what what makes us a little
different and we also are alwaysresponding to the latest
studies.
So you know there's been a lotof um a lot of um new research
on cardio aerobic activity Imean we've known that for a long
(37:22):
time we've always incorporatedit but we're doing it even more
and in different ways and youcan actually I was going to um
let you know that taking one ofour classes you will get your
cardio in because we put it inin everything and it's not like
(37:43):
and what I've seen over theyears from just the people that
I work with is that there arepeople that come in they're
diagnosed with Parkinson's andmaybe they've already been
exercising or they're a littlebit they're on the younger side
and they're have their balanceis still okay.
So they can do a lot like soyoung people often will even
(38:06):
start doing extreme sports andmarathons and triathlons and all
of that which of course is greatbut you don't have to to do
that.
And then there's sort of anothergroup of people that either
haven't exercised much in theirlives or their disease has
progressed and they're nervousbecause of their balance.
(38:27):
So the walking and running andbiking is not really something
they feel comfortable or can getas much cardio as they need.
And then of course then thereare people that are even older
that that's even more difficult.
So by doing the way we'vestructured our classes by having
(38:47):
them in a chair they're they'revery challenging you will get
your cardio in and so I thinkthat's that's all been really
helpful.
And that's something that wehope maybe your you and your
audience recognize that a powerfor Parkinson's is something a
little different that's outthere that's a free resource for
(39:10):
people with Parkinson's whereyou can get accomplished all
those goals and they'remodifiable.
So if you don't want to stayseated you can do those same
exercises standing.
And we often will show you howto do those I liked what you
said about neuroplasticity.
SPEAKER_00 (39:29):
I talk about that on the podcast pretty frequently
but you know it's I think when alot of times when people get
diagnosed with Parkinson's theythink oh I can't do this anymore
and it's I always think you canalways learn something.
I decided after seven years Iwanted to learn to play guitar
when it was a little bit of astruggle but I I just look at it
as I break it down into smallsteps and and then build on it.
(39:50):
And I think you can learnanything I've always I hated the
word I can't because I think ifyou really want to do it you you
can do it.
It's just you just have tofigure out how to do it and
neuroplasticity will help youbuild those you know neural
pathways that you know enableyou to continue to do what you
do.
So I'm glad you brought that upso yeah that was important.
SPEAKER_01 (40:09):
That sounds like you're really driven.
SPEAKER_00 (40:12):
Oh yeah I like well I've I well it went back to what
you said earlier about having asense of purpose.
When I had to stop working I Ifelt like maybe for a year I'd
lost my sense of purpose and Ihad a mentor and that's where
she mentioned about doing apodcast and she had me write a
book and I just it gave me asense of purpose again because
(40:35):
I've always liked to help peoplemy grandfather was a a family
doctor when I was growing up andthis was back in the late 60s
early 70s and I would go onhouse calls with him and there
was a lot of the people couldn'tafford to pay him and he he
didn't do it because he wasgetting paid.
He did it because he was wantedto help people and I've kind of
lived that my whole life and I Ithink I've I felt like I lost
(40:56):
that when I uh had to stopworking but uh you know
podcasting and talking to otherpeople and volunteering those
things you know really help giveyou a sense of purpose and
whatever somebody's passion isjust go after it if you want to
learn something new you can doit if if you have the mind to do
it just break it down into smallsteps.
SPEAKER_01 (41:16):
So well I love how you break things down for people
because I love the way yousummarize all the research and
latest studies for people you'reyou are doing exactly that
breaking it down into smallsteps though for your audience
and that's really cool that youhave that capability of doing
that.
It's a great service yeah it's agreat way of helping people get
(41:40):
through all the dense scientificliterature so if I could ask you
what gives you the most joy andfulfillment of working with
Power for Parkinson's I thinkjust seeing the the community
the way people respond and howempowered people become I just
it makes me feel good andinspired every single day.
(42:04):
And I think that's the way it isfor our whole staff sometimes
we're we're working and tryingto get a lot of stuff done
behind the scenes but we alwaystry to go to a couple classes a
week and it's just you walk inand you just know that you're
helping people and it just it'sa great feeling.
SPEAKER_00 (42:23):
And I think that there's a lot of hope for people
Parkinson's oh absolutely so ifyou could have just a couple key
messages on somebody that justgot diagnosed or maybe they've
been living with Parkinson's andthey feel isolated or what would
you tell them?
SPEAKER_01 (42:38):
Well I would tell them that don't give up hope and
that staying engaged socialbeing social trying to in
whatever capacity be aroundpeople and stay active and I
would invite them to use ourYouTube channel because that
(42:59):
will help and get into theunderstand the movement and if
there's something in their areatry to get involved in a group
take a course do something thatkeeps your mind active I think
that would be the most importantthing.
Okay great and we also I want tooh go ahead I just wanted to
(43:19):
just put in a little plugbecause we're about to launch a
uh a virtual support group andthat will be pretty soon because
we've had a lot of requests forthat so if anyone's interested
and just wants to have anopportunity to talk with others
could be from anywhere we willbe having that soon so they can
(43:41):
sign up on our on our websiteget our newsletter we have a
weekly newsletter I know you dotoo we try not to bombard people
but just so they know what'sgoing on.
SPEAKER_00 (43:52):
Great so if people wanted to get in touch with
Power for Parkinson's can tellus what your YouTube what they
would look up on YouTube, whatyour website would be and if
they wanted to support you aswell.
SPEAKER_01 (44:03):
Okay.
So it's pretty easy you caneither go to our website which
is www.power for fourparkinsonsdot org or on YouTube they can
go just look up power forParkinson's words YouTube slash
power for Parkinson's.
We also have a Spanish channelwhich I didn't mention earlier
(44:26):
uh but as we try to reach asmany people as possible with
Parkinson's that is our goalthis is something that we've
just launched in the last year.
So we have a designated YouTubechannel for people who speak
Spanish and that's Power forParkinson's in español.
And our social channels onFacebook and Instagram and
(44:47):
LinkedIn are extremely activealmost a hundred thousand people
following us on there and wepost really fun videos on there
as well so there's a lot of waysto get in touch and like I
mentioned our hotline our phonenumbers on our website if there
are any questions people cangive us a call.
SPEAKER_00 (45:08):
And I really like that you get back you respond to
all comments I think that'sthat's great and I think it's
very important it it makespeople feel like they're
appreciated and someone'slistening to what they have to
say.
Yeah well we're here for youwe're here for anyone who has PD
and we're ready to help out andguide you you know in any way we
(45:28):
can so I want to thank you somuch for being on today I want
to thank you so much for beingon today and I I want to ask
people to go and visit yourwebsite visit your YouTube
powerforparkinsons.org and go tothe YouTube channel and
participate in the classes thatare online and if you're in the
Austin Texas area then show upand participate and you'll feel
(45:53):
you'll get a great sense ofcommunity.
So I want to thank you again forbeing on the program I really
appreciate it.
SPEAKER_01 (45:59):
Well thank you so much for what you're doing and I
really appreciate theopportunity all right well
thanks and uh hope everybody hasa great weekend and thanks for
listening.
Thanks by the way
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