100th Episode Special: How the PUNCH Program Transforms Parkinson's Lives Through Movement, Mentorship & Hope
🎉 Milestone Episode Alert! Join us for our 100th episode celebration of Live Parkinson's - Live an Exceptional Life as we welcome two extraordinary guests who have transformed countless lives in the Parkinson's community.
Meet Susannah and Megan, certified personal trainers and creators of the groundbreaking PUNCH Program (Parkinson's Unified Neurologic Conditioning and Health). These movement experts have dedicated years developing specialized fitness programs for people with Parkinson's disease, and they've been instrumental mentors in my own 15-year Parkinson's journey.
What You'll Discover:
✅ The Science Behind Movement - How exercise creates neuroplasticity and slows Parkinson's progression
✅ PUNCH Program Secrets - training methods designed specifically for neurological conditions
✅ Practical Home Exercises - Simple movements you can do daily to improve symptoms
✅ Overcoming Exercise Barriers - Expert strategies for motivation, fear of falling, and adapting routines
✅ Community Power - Why group fitness classes create healing beyond physical benefits
✅ Real Success Stories - Inspiring transformations from the PUNCH program participants
Perfect for:
- People newly diagnosed with Parkinson's seeking exercise guidance
- Parkinson's warriors looking to optimize their fitness routine
- Caregivers and family members supporting loved ones
🎯 Take Action Now:
📖 Get FREE Resources: Visit liveparkinsons.com for exclusive articles, exercise guides, and evidence-based strategies for living exceptionally with Parkinson's.
📧 Join Our Community: Subscribe to our FREE monthly newsletter at liveparkinsons.com and never miss empowering content, expert interviews, and practical tips delivered directly to your inbox.
❤️ Support the Mission: Help us reach more people in the Parkinson's community! Your support at ko-fi.com/liveparkinsons helps us continue creating life-changing content and expanding our reach to those who need it m
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.
Please visit me at Liveparkinsons.com
Get my book - Spectacular Life - 4 Essential Strategies for Living with Parkinson's - My Journey to Happiness
Mark as Played
Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Speaker 1 (00:10):
Hello, 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
.
Today, I'm blessed and honoredto be recording my 100th podcast
.
I'm truly in awe of having theopportunity to connect with so
(00:33):
many wonderful people livingwith Parkinson's who inspire me
every day.
I want to thank all of you thathave listened and connected
with me.
Your support has helped keep megoing and generating content
that helps you live your bestquality of life with Parkinson's
.
Over the last year and threequarters, I've been able to help
other people with Parkinson'sbecause you've tuned in and
(00:54):
interacted with me.
Two years ago, with nudging fromone of my guests on today's
show, I began researching how tocreate and launch a podcast.
I followed one of the quotesfrom a coffee mug that I
received from one of my formermanagers that said life begins
at the edge of your comfort zoneby Neil Donald Walsh, and I
(01:16):
really took that to heart andjust threw caution to the wind
and decided to launch the liveParkinson's live exceptional
life podcast.
Now my hope was that I couldhelp a few people live a great
quality of life with Parkinson's, thinking that maybe there
would be a few people in thelocal area where I live that
would listen.
Little did I know that I wouldhave a supportive community to
(01:37):
continue to push me to createnew content.
So, from the bottom of my heart, I want to thank each and every
one of you for tuning in on aweekly basis.
Now my commitment to you is tostrive to continue producing
content that helps you live yourbest life with Parkinson's.
Now I understand the dailystruggles and challenges that we
all face living withParkinson's on a daily basis,
(02:00):
but when we all stick together,share success stories and then
just bond with others that aregoing through similar challenges
Together, we're unstoppable ifwe stick together.
Now I want to switch gears andtalk about today's 100th episode
and why I chose to have twospecial friends on, because not
only have they been a tremendoushelp on my Parkinson's journey,
(02:22):
but their expertise andexperience is something that we
can learn from so that we canlive our best life with
Parkinson's.
So hopefully, after today'sepisode, you'll have some
information that's actionableand you can use that to improve
your life.
Now, I've always believed indivine intervention and
sometimes people come into ourlives when we need them most to
teach us, to guide us and tohave a positive impact on our
(02:45):
lives.
I've been fortunate to have twopeople come into my life who I
consider dear friends andmentors.
Now, I know we often think ofmentors as people who are
significantly older than we are,with more life experiences, but
a lot of times when we havethat mindset, we can limit
ourselves to the impact peopleyounger than we are can have on
our lives.
So, you see, it's not the ageof the person that defines a
(03:08):
good mentor, but it's thepersonal connection and the
learning that you get from yourmentor.
So today I want to introduceyou to two wonderful people who
are my mentors and friends andhave not only helped me to live
my best life with Parkinson's,but have also touched the lives
of others struggling with thedaily challenges of Parkinson's
and enabled them to live theirbest lives.
(03:31):
So let me introduce you toSusanna Gillespie and Megan
Anderson.
Susanna is the Vice Presidentof Membership and Recreation at
the Jewish Federation of GreaterHarrisburg.
She has a master's degree andis currently a doctoral
candidate, with her researchbeing conducted on female
caregivers and the overalleffect on their mental and
(03:53):
physical wellness in peopleliving with Parkinson's.
Now she's a certified fitnesstrainer and co-developer of the
Momentum and Punch programs forpeople living with Parkinson's,
and she's been married to herhusband, robert, for 22 years
and has two children, ethan andCharlotte.
Megan is the fitness andwellness director at the Jewish
(04:13):
Federation of Greater Harrisburgand she's a graduate of
Albright College and is acertified fitness trainer and
co-developer of the Punchprogram for Parkinson's and she
leads on the intakes of newpeople to the program.
She was a college lacrosseplayer and she still coaches for
the local high school lacrosseteam Now I've had the
(04:33):
opportunity to know and workwith both Susanna for about
eight years and Megan for fiveyears, through both group
fitness classes and Parkinson'sindividualized trainings and
mentor discussions, so I'd liketo welcome both of them to the
show.
All right, I wanted to lead itoff by asking you what initially
sparked your interest inworking specifically with people
(04:54):
who have Parkinson's.
Speaker 2 (04:55):
So I started working with people with Parkinson's
back when I worked with theMomentum program.
I was just a new personaltrainer trying to get experience
with all populations andSusanna was one of the people
that persuaded me to startteaching a group fitness class,
and it was specifically withthis group.
I had no idea what I was doing.
I literally learned everythingfrom Susanna, jen Shannon and
(05:19):
the other instructors there tohelp me engage a class with this
disease and after that I kindof fell in love with the program
and the people.
Speaker 3 (05:30):
I was part of.
I was personal training at thetime and I had gotten my degree
in biology and then, when theopportunity came up where we
wrote a grant to develop theMomentum program Pennsylvania is
one of the leading states withindividuals diagnosed with
Parkinson's disease due tochemical and agricultural runoff
, so it was a great opportunityto learn more about the
(05:53):
condition.
So that was really how I firstgot involved in it and then,
working with that knowledge andbeing able to personal train
individuals and then develop theactual classes, it was a great
experience to be able to look atit from an individual and group
mentality and then also to beable to help new instructors and
new trainers come up throughthe program as well.
(06:15):
That's really how I learnedabout it and fell in love with
it.
Speaker 1 (06:18):
That's great Thanks for sharing.
So how has your understandingof Parkinson's and movement
evolved over your years ofexperience?
Speaker 3 (06:26):
I think for me, at first we were really looking at
it from just the symptoms themotor symptoms and the cognitive
symptoms and then, as we gotdeeper into learning about the
individuals themselves, werealized the 360 degree effects
of what Parkinson's meant withmedication management, at-home
life and long-term care, and howthis really affected them on a
(06:48):
day-to-day basis with their carepartners, their families,
transportation issues and all ofthe things that really went
into what having Parkinson'smeant and what that really meant
for us as program developersand how we could best serve them
for us as program developersand how we could best serve them
(07:08):
.
Speaker 2 (07:08):
Yeah, at first, understanding the basics and
just the overlying blanket ofsymptoms of Parkinson's disease,
I was able to start training myclass the way that I thought
was just like the blanketstatement of everything.
And then with, unfortunately,the progression of disease, some
people have symptoms that aremore severe.
So I have to adjust the classor my one-on-one training.
So my understanding ofParkinson's has grown because I
(07:36):
realize it's not just XYZsymptoms.
They can become like XYZ pluslike a few more things that you
haven't seen before and you haveto adjust that way.
So every day could be differentfor each class and each
individual.
Great.
Speaker 1 (07:47):
Now, do you have a client?
Or can you think of a momentover your years working with
Parkinson's patients where yousaid to yourself geez, this is
my calling.
This is really.
What I want to do is work withpeople with Parkinson's.
Speaker 3 (08:01):
Well, I think for sure, Chris, you is one of them
for me, and then we've had acouple others, definitely in the
Momentum program, that havetouched us.
We've created really goodrelationships and seen firsthand
what the interaction with theirexercise and development has
been able to do with slowingtheir progression.
And I think one of the thingsthat I always love to see is
(08:24):
when they see themselves gettingbetter and then, conversely,
when they think they've beencured on some levels and they
stop coming and then theyrealize that the exercise must
be continual and then they stopcoming, then all of a sudden
they start coming back and wesee the change and the symptoms
have gotten worse and we canhave those those really hard
heart to heart conversations andthen bring them back and they
(08:44):
realize this is for the long runand we're going to be together
in it for forever.
Speaker 2 (08:51):
Yeah, there's a bunch of people I can think of, but
one individual that really stuckwith me was Dr Jay, who was a
cardiologist, and he came intothe program just very down on
himself and him moving and justbeing able to say I can complete
an hour class was just a bigthing for him.
And then he started theone-on-one training and we were
(09:13):
working on functional movementsjust being able to get out of
the car smoothly, getting up anddown the stairs.
When he did those one-on-onetrainings he was able to say
confidently that he was able todo these things better versus
those who just don't takeadvantage of the one-on-one
training.
So individuals like that andseeing them just improve
(09:33):
physically after those sessionswas a big impact on me, great
Thanks.
Speaker 1 (09:38):
Well, as you can see, they both have a lot of
experience dealing withParkinson's patients and I've
been fortunate to participate intwo different programs.
One was Momentum, and now theymoved to Harrisburg and they
started a program called Punch.
Can you tell us a little bitabout the Punch program and how
you and we'll talk maybe in aminute about enrollment, but how
(10:00):
does the Punch program helppeople with Parkinson's?
Speaker 3 (10:04):
So Punch is a little bit different, where we've
really combined a number ofdifferent formats.
When we arrived, they were justusing Rocksteady Boxing as a
format twice a week, which isgreat.
Rocksteady Boxing is awonderful class.
We came in and added in powermoves, flexibility training,
yoga, athletic movements.
(10:24):
We've since added in pedalingfor Parkinson's, which is a
class that Chris and Brandonteach.
We've also, through a grant,been able to offer move away PD,
which is creative movement, andlive music with a classically
trained pianist.
We've also been adding in artwith our artists in residence.
We're looking to add in evenmore with stretching classes.
(10:48):
So again, being able to reallyattack Parkinson's from the
total body and mind, being ableto offer red light therapy now
the assisted stretching,obviously personal training and
being able to completelyreimagine all of the things that
we know everybody needs andbeing able to offer it to our
(11:09):
participants and give them theabsolute best outcomes we
possibly can.
Speaker 1 (11:14):
So I'm personally involved with the Punch Program
as an instructor for Pedalingfor Parkinson's, but also as a I
don't want to say patient, butan enrollee, I guess I should
say and it has benefited me.
I've done several classes andit's helped me with my balance,
my gait and a bunch of otherthings.
But how do you incorporatebalance, strength, flexibility,
(11:39):
cognitive training into yoursessions but still make it fun
so that people actually want tocome?
Speaker 2 (11:45):
So I'm able to balance all those things by just
gauging what the class isphysically feeling and
emotionally feeling, because Ialways ask them on a scale of
one to 10, how they're feelingthat day, because there's going
to be some people who arefeeling like a 10, they can
tackle every exercise we'regoing to do.
Then we have some individualswho feel like a two.
So I always try to keep myselfupbeat and encourage everyone to
(12:08):
encourage each other.
The participants are reallygood at keeping each other
motivated in class and we're allsticking together making sure
we're okay.
I'm always playing fun music.
We're either singing or dancing.
I make the stations work ondifferent aspects, so a station
is balance or flexibility,hand-eye coordination, some
(12:31):
cognitive pieces.
I do a lot of numbers with theclass.
We'll do some math and there'ssome times where even Susanna
does this.
We'll spell out words whenwe're doing power moves and that
just gets your brain thinkingand your muscles moving.
So that mind body connection aswell.
One of the most importantpieces that I try to throw out
to everybody in class is thestrength piece, because you need
(12:52):
the muscle mass to help withappropriate reception of
movement and that is just, Ithink, one of the biggest pieces
for them, because when you'reaging you are unfortunately
losing muscle mass.
So if you keep up with thestrength program and you keep
yourself motivated, find funthings out of it, you're still
going to show up to class.
Speaker 1 (13:11):
How do you do intakes ?
When someone calls up and saysthey want to be, you participate
in the punch program.
Are there certain tests thatyou do and how do you measure
success?
Speaker 3 (13:24):
Yeah, so when they call in and request some
information, we've got a coupleof different people that can
answer a lot of the questionsand then individuals will meet
with either Megan or myself.
We go through a pretty standardbrief medical history.
We find out when you werediagnosed, what symptoms you
initially had, what symptoms younow have, what medications
(13:44):
you're on.
Then we run through a timed upand go walking backwards one
foot balance, on and off thefloor test.
Those are also tests that we'llcomplete every three months and
track your progress, and we canshare those tests back with you
so you can share those backwith your neurologist or
movement disorder specialist.
We also do some qualitativetests where we're asking you how
you're feeling about startingthe program, your faith that
(14:07):
exercise can help you change,how you feel like your
neurologist or movement disorderspecialist is listening to and
addressing your concerns, whoyou have as a care partner along
the process, and we also askthese of your care partner if
they're present too, because oneof the things that I think
we're both really passionateabout is making sure that you
are advocating for yourself, andif you're not advocating for
(14:29):
yourself, we're making sure thatwe are the ones to empower you
to do that, because Parkinson'sis very serious and we want to
make sure that you are takingthe best care of yourself and
that your care team is workingas hard as you're going to be
working in your class foryourself.
So you really have to know thatyour medical team works for you,
and if they're not working foryou, then it's time to fire them
(14:52):
and move on to a care teamthat's going to be your biggest
advocates, because your medicinehas to work, your exercise has
to work and your mind has to bein the right place.
So we really try to assess thaton your intake as part of the
process.
Speaker 1 (15:07):
Now one of the things that I've noticed being a part
of both of the programs is justthe camaraderie and almost a
family type of setting.
Would you agree that in termsof the punch program, that you
see the same thing, that peopleconnect because we share similar
challenges and then evencaregivers can get involved?
(15:28):
But can you think of a successstory from the punch program
where someone started and theymight not have had the
confidence to think, oh, I cando this, and then now you've
seen a vast improvement?
Can you share a success storyfrom someone in the program?
Speaker 2 (15:47):
I actually recently talked to one of our
participants is.
I'll keep his name confidential, but he has been following more
.
He's super eager to do stuff,he wants to be able to do all
the things and his mind goes ahundred miles per minute versus
(16:07):
his body.
His body's moving slower thanit wants to and we've talked
about him going to his doctorand asking for an ADHD diagnosis
.
It took weeks and weeks andweeks for him to realize like he
actually needs to go, advocatefor himself, and the other day
he comes up to me and goes I gotthe diagnosis, I'm taking the
medication, my mind's movingslower but my body's moving more
(16:31):
intentionally because he wouldmove again, like he would move
so quick and his mind's quickerwhere he'll have this tendency
to tumble and take falls, buthe's one to always get back up
and try again.
He's never down on himself Likehe's funny when he falls because
he's like I'm fine, I'm fine,I'm fine.
But it's one of those thingswhere, if you know your mind's
(16:52):
going faster than your body, yougot to be intentional with your
movement.
And the whole mind-bodyconnection thing plays a big
part, especially with theParkinson's disease, because you
need to be able to control yourmovements, taking deep breaths,
stuff like that.
But having this diagnosis forhim to help him improve just
slow him down and having moreintentional movements is huge.
Speaker 3 (17:13):
And.
Speaker 2 (17:13):
I know who you're talking about.
Speaker 3 (17:14):
So it's really important too, because we see
these individuals multiple dayseach week and he's been doing a
great job because he's beentaking advantage of many of our
different aspects of the programbetween classes and assisted
stretching and red light andpersonal training.
So we notice really greatsuccess when people interact
(17:35):
with us on more than justclasses but the additional
services.
But he's definitely one of theindividuals where we notice when
he's not there and other peoplein class notice when he's not
there.
So when I came in to teachclass the one day, I said, hey,
we're so-and-so, and people arelike, oh yeah, he hasn't been
here for a couple of days and sowe were calling him and making
sure that he's OK.
So we are always looking outfor each other, the class
(17:58):
members are looking out for eachother and the socialization is
such a huge part of anyParkinson's program Because
obviously there's tons ofYouTube videos, there's tons of
exercise programs that you couldaccess over a video or a DVD.
But being together it helps tomotivate you when you're having
a bad day.
You can help encourage otherswhen you're having a great day.
(18:18):
That really involves the mindand it gets your heart involved
and with that emotion comes evengreater success.
Speaker 1 (18:25):
Great Thanks.
Let's switch gears a little bitnow, if we can, and talk a
little bit about how exercisecan really help your movement.
And you know, I know a lot ofpeople when they're first
diagnosed, they think I don'twant to exercise because it's
going to make me tired, I'mgoing to be fatigued or I don't
feel like it.
But one thing I've learned over15 years is that exercise is
(18:47):
the key to helping you staymobile, helping you continue to
be able to participate in thethings that you like to do.
So, if we can, let's talk alittle bit about what the
research says on exercise andmovement.
Can you share a little bit ofyour experience, of what, maybe
what you've seen?
Speaker 3 (19:06):
So we definitely know the exercise, like Chris was
saying, parkinson's just makesyou want to slow down, makes you
a little bit more apathetic togetting up and moving.
So it is a huge challenge andyou really have to kind of fake
it till you make it.
And we'll.
We'll have this conversationwith a lot of people, especially
when those days when you're notfeeling it and I tell people
just promise, promise me,promise us that you're going to
(19:27):
show up for five minutes.
If you show up for five minutesyou're probably going to stay
for 10.
And if you stay for 10, then 15is not so hard and then by the
end of it you're probably goingto stay for that 50 minute class
.
So we know that exercise, justlike our brains, is that muscle
that has to come in and bestretched, be flexed and become
permanent in your body.
(19:48):
Our muscles also have thatmuscle memory and the more you
do things, the more your body isactually going to crave the
energy our flexibility to theflexibility builds.
You can't just do work onflexibility one day and have
those results last, because withParkinson's we know the
rigidity keeps on trying toattack and make you tighter and
tighter and tighter, so you keepon having to work against it,
(20:10):
to keep on, if nothing else,maintaining baseline.
But to see improvements you'regoing to have to really work to
fight after it.
So the science is definitelyshowing that we have to be
working on the exercise daily.
We joke that it's the one drugthat we can't overdose on.
So the more exercise you do,the better, and we know we
really have to diversify theexercise.
So it's not just one kind ofexercise.
(20:30):
We have to be doing balanceexercise, things like Tai Chi,
yoga.
We need to be doing bigathletic, explosive movements.
We need to be doing bigathletic, explosive movements.
We need to be doing things thatmake our movements bigger.
We need to be doing athleticdrills.
We need to be doing endurancework, strength work.
You can't just do one.
You have to do a littlepotpourri of everything and
varying it throughout the day,and that actually works well,
because there are some days thatyou're going to feel good and
(20:51):
you're going to have a lot ofenergy.
So you capitalize on that anddo the harder things and on the
days when you're not feeling asgreat, you can slow down and
work on the less intense things,like the Tai Chi and the dance
and the balance work andeventually, hopefully, it all
evens out.
Speaker 2 (21:06):
Yeah.
So there was a research studydone recently that plyometrics
is huge for those withParkinson's disease.
So when I say plyometrics, it'slike jumping and single leg
work and that explosive piece,because it's working on that
balance it.
It makes it fun because you'renot thinking like, oh, I'm doing
this for balance reasons andwhatnot.
(21:26):
You're doing athletic movementsthat make you feel like good
afterwards, like if you're ableto jump on a, like on your foot,
on your left foot, like onetime, do two times, then three
times, your confidence goes upand then you're coming to the
next class saying, okay, whatcan I do today?
Am I able to do five jumpstoday?
Am I able to do a ski jump for10 repetitions?
(21:48):
Those endorphins that are goingthrough your brain after
exercise is what's going to keepyou coming back and making
yourself better, going to keepyou coming back and making
yourself better.
So yeah, the research isshowing so much how exercise
really does improve theParkinson's symptoms.
Speaker 1 (22:04):
I know when a lot of people are diagnosed that they
think I don't like going to agym.
I'm intimidated when I go to agym.
So how do you overcome thatinertia to get people to say I
can do this, I can come to thefitness center and I can work
out with other people in it andnot feel embarrassed?
Because I know a lot of usliving with Parkinson's.
(22:26):
If you're having a tremor oryour balance is off, a lot of
times people don't want to goout in public because they
they're self-conscious.
So, and especially then to agym, because there are people
when you say, oh, let's go tothe gym or the fitness center,
they're thinking of these peoplelifting these big, heavy
weights and they're thinking Ican't do that.
So do you have suggestions foron how to get people to become
(22:50):
engaged in these programs?
Speaker 3 (22:52):
I think one of the great things is just like when
you want to go out to eat, youkind of think, what do I want to
eat today?
And if you want to eat Chinesefood, you go to a Chinese food,
you don't go to a Mexicanrestaurant.
And, just like Chris is saying,you need to find the fitness
center that's going to supportyour needs, and there are
definitely certain gyms that arecatering more towards a very
(23:13):
heavy duty weightlifting crowd.
There are gyms that are morecatering towards, just like, a
Pilates crowd.
So you want to find a gymthat's going to be catering and
have specific programming to aParkinson's crew.
So I'd say, definitely Googlethings, look for reviews, reach
out, talk to your neurologist alot of them, and we've done a
lot of effort to reach out toneurologists to make sure that
(23:35):
they know what we're offering.
Being able to find and talk topeople that have some already
good knowledge of whatfacilities have a good program
is going to be key.
And then, if you have otherpeople maybe in a support group
or maybe through the practicesthat you're going to that you
can talk to in advance to say,hey, is this a good place, while
I feel at home here.
(23:55):
I think that really helps tospeak to that as well.
Go on a tour, find out, seek itout.
One thing that when the JewishFederation where we are now it's
the Simons Family FitnessCenter is what the actual gym is
called.
When we moved locations lastyear into the new building, the
actual Parkinson's program thepunch program actually moved
locations into a place that wasa little bit more out in the
(24:16):
open where it kind of had beenoff, into a side room, and one
of the individuals came up to me.
They was like well, how is thisgoing to work?
Like people are going to know Ihave Parkinson's.
I first looked at him and Isaid well, they're only going to
know you have Parkinson's a ifyou tell them.
And I said, b, I think it'sgreat, because then you're going
to have a bunch.
And now nobody even mentions it.
Because as soon as they walk inthe door they know that
(24:37):
everybody is there to supportthem and make sure that they're
okay Extra sets of eyes andeverybody is there to make sure
they're having the absolute bestexperience.
And now it's not even a thing.
Now nobody even thinks twiceabout it.
We have T-shirts that are madethat say Punch Program on it,
has a big fist on it, and theywear them with pride and so we
have birch for them and itbecomes a club and becomes part
(25:01):
of their source of belonging,and it's not something ever to
be ashamed of or to cower awayfrom.
It becomes something that makesthem know that we love them,
that they have a place and thattheir place is of huge
importance to us and it's partof our mission.
Speaker 1 (25:17):
Now one of the things I I've seen over the years,
especially participating in alot of the group Parkinson's
fitness classes is people thatthink they can't do something.
And then when you give them thatpush or nudge and they actually
they see that step change andall of a sudden their face
lights up and they think, wow, Ican do this.
(25:37):
And you know, I've seen itmultiple times where someone
comes in and they're very,they're intimidated, or because
they look at what other peoplein the group are doing and they
and they and they're thinking tothemselves I can't do that.
When you, when you challengethem, then all of a sudden they
start to realize that I can dothis, and then you push them,
then all of a sudden they startto realize that I can do this,
(25:58):
and then you, you push them moreand then pretty soon they're
down the road a lot farther thanthey ever thought they would be
.
So can you talk a little bitabout how you develop your
program so that you push peopleto a point that they they're
capable of doing it, but notgoing too far where it's going
to cause some type of setback?
Speaker 2 (26:19):
Yeah, one of the things I do in class is if we're
doing multiple sets of anexercise, I will tell them to
start off how they feelcomfortable with If the squat is
only knees at 90 degrees, it'sknees at 90 degrees the last set
.
If they're feeling really good,they're warmed up.
I'm like push yourself a littlebit, try to sit down a little
lower, try to jump a littlefurther.
(26:41):
It's all based on yourcomfortability, but I'm always
going to be sitting therelooking at you saying I know you
can do more, let's do it.
I'm going to be right therenext to you and making sure
you're okay.
And once they're able to dolet's say, squat down a little
lower or take a lunge a littlebit bigger they feel confident
in themselves and then the nextclass they come in and they're
(27:02):
doing that big step right away.
It's just having that supportsystem of one everybody and
having us as instructors beingthere to motivate and push them.
They find themselvesprogressing in the exercise
versus regressing findthemselves progressing in the
exercise versus regressing.
Speaker 1 (27:23):
One of the things that I've learned from both of
you is incorporating multipletypes of exercises into one
exercise, so doing cognitivebalance, strength, and it might
all be incorporated into oneexercise.
So can you, if you had threeexercises, or could you, give us
three exercises that you mightbe able to incorporate a
strength, a balance and acognitive exercise so that
(27:45):
people that aren't fortunateenough to have a program in
their area might be able to doat home after they get approval
from their doctor?
Speaker 3 (27:51):
One of my classic ones that I love, and you can
kind of titrate this one to yourability.
If you're sitting on a chairand if you were to have a pillow
at home, you could put onepillow under one foot and your
other foot's on the floor andyou can do your squat sit to
stand that way.
So one foot on the pillow, onefoot on the floor.
Stand up.
When your foot is on the pillowyou have a little bit more of a
(28:14):
balance challenge because yourfoot is interacting with the
pillow a much different way thanyour foot is interacting with
the floor.
So already your foot is alittle bit different.
You've got the balancechallenge.
Every time you stand up and sitdown, I want you to spell a word
and then you want to spell itbackwards.
So by how long that word is?
It's going to change howcomplicated that cognitive
challenge is.
Then, if you're feeling evenbetter about how you're standing
(28:37):
up and sitting down, take thepillow away and just be on
tiptoes on the one foot.
So the ball of your foot isdown, the heel of your foot is
up.
Stand up, sit down.
If that still feels good.
When you stand up, lift yourknee up and balance on one foot.
Put the foot down, sit down andkeep on doing that, either with
saying words forwards andbackwards, or counting forwards
(28:57):
and backwards.
Skip counting.
Counting by fractions.
Counting by fractions isprobably one of our most hated
activities in class, but alsothen probably one of the ones
that we all need to work on themost, because it is so tricky.
And if it's tricky, that meansit's working.
Our brain and a lot ofdifferent neurons are firing.
Speaker 2 (29:14):
One of the drills I do in class I have these colored
dots.
They're like rubber dots thatstick to the floor.
At home you can take differentcolored painter's tape and just
tape them around in a circle.
So there's like I have a reddot, blue dot, orange dot, green
dot, like the rainbow, and whatI do is I write a pattern of
(29:34):
the color.
So you have to lunge to red,lunge to green, lunge to purple.
You have to do that both withthe left and right foot.
That's challenging you to onework on your lunge, have that
weight shift and balance pieceand you're also cognitively
trying to memorize that pattern.
So once you're comfortable witha three color pattern, go up to
four.
(29:54):
If you're comfortable with four, go up to five and that will
help also with the repetitionsand just working on that
strength, that single legstrength and that weight shift.
Speaker 1 (30:03):
Just as a personal example, one of the ones that
always sticks in my head is Iwas training with Susanna and
she had me stand on a Bosu balland hold a kettlebell and then I
had to say the states inalphabetical order and went
through that one and I thought,oh, I'm done with that.
And then she said, okay, well,now let's do all the state
(30:24):
capitals in alphabetical order.
So I think she was trying tokill me that day.
But no, just seriously.
But it really did.
It was a challenge.
I couldn't even do that one.
I was impressed that you could.
So I felt so much.
I mean, it was like, wow, Icould actually do that.
So a lot of times we think thatwe can't do something, but when
someone's there to push you,you'd be surprised at the things
(30:45):
that you can achieve, andthat's one of the reasons that I
highly suggest.
If you can get into groupfitness classes whether it's a
Parkinson's class or not you'regoing to see great improvement
and they can always modifythings to make it so that you
can participate.
So don't ever feel like youcan't participate in any type of
class.
(31:05):
You tell the instructor thatyou need some modifications and
they're always happy to help youout.
So that was one of the onesthat really stuck in my mind
over the last couple of years.
And then the other one wasMegan had us walking on there's
these plastic rocks and we wouldhave to walk on and then skip
to different colors and saydifferent and maybe come up with
(31:28):
a fruit or something at thesame time.
So it's definitely great toincorporate a lot of different
exercises into one type ofactivity, but again, you always
want to make sure that you getclearance from your doctor first
and let them know what type ofexercise program that you're
participating in.
All right, so let's changecourse again, and I want to talk
a little bit about mentorship,and I mentioned at the beginning
(31:50):
that a lot of times we thinkthat, oh well, a mentor has to
be someone that has more lifeexperience or is older than you.
But both Megan and Susanna aremy mentors and they're great at
helping me with questions that Ihave and just giving me overall
guidance.
So again I want to ask both ofyou what's it been like working
(32:12):
with me over the years and howhave you seen me grow and
improve or adapt?
Speaker 3 (32:19):
It's always been a joy to work with Chris because
Chris has always attackedeverything I think that we've
ever given him to work on.
I always laugh because he getsup early and he's always
accomplished about 17 thingsbefore, I think, I've even
started my day, so that's alwaysbeen impressive.
But he takes everything and heworks really, really hard at
things about 17 things before, Ithink, I've even started my day
, so that's always beenimpressive.
But he takes everything and heworks really, really hard at
things.
We all have our ups and downsand he's had moments where he
(32:41):
feels like he needs a newchallenge, and he needed a new
challenge and I said, hey, whydon't you share your knowledge?
Because he has a lot of greatknowledge from his education and
his work experience, and so Iloved it that he had written his
book and he's working throughthis podcast and now impacting
people all over the world andhundreds of countries and
(33:02):
hundreds of cities.
And whenever I think the thingthat I think we've both noticed
whenever we've had individualsthat start the program and are
unsure or don't have a lot ofself-belief that they can either
do it or be a part of somethingwhere other people are around,
we'll just ask them like hey,can you talk to this person?
And without a doubt he's.
(33:23):
You know, he's like yep, giveme their name and he goes and
talks to them.
And people that don't thinkthat they can do it, after
talking to Chris for you know,15 minutes all of a sudden
really see belief in their ownability to do something, and
it's been wonderful to see himstep into those roles and share
not only his ability but hisfaith in others, and he, I know,
(33:45):
also believes in the two of usa whole lot, which has helped us
in so many ways through overthe course of years.
So just being able to share ourlove and our ability to try to
help as many people as we canthrough this process has been
great.
Speaker 2 (33:58):
Yeah, working with Chris has been amazing.
He is a motivator for me butalso a motivator for all the
people he's touched in his life,like the momentum program.
I just remember you being inclass and just motivating those
who are still just a little shy,a little timid of pushing
themselves out of their comfortzone.
And even with the punch program, with starting move away, pd,
(34:20):
you stepped in and you took theclass and you told everyone
about it and everyone followedyou after.
So people really do trust youand they listen to you, which is
amazing.
Speaker 1 (34:29):
Well, thanks.
What recommendations would youhave for people that are newly
diagnosed?
Then I mean, because it's it'sreally's really a shocking thing
when your doctor tells you, oh,you have Parkinson's disease,
and you're thinking, oh great,what do I do next?
Where do I go?
So what type of recommendationswould you have for people that
are newly?
Speaker 3 (34:47):
diagnosed is either we found from talking with a lot
of our participants is theyfeel like they've been left with
the diagnosis and not a lot ofdirection from their doctor or
provider, whoever that may be orthey're told they need to do a
lot of things, but then theydon't know where to start.
(35:09):
They're overwhelmed, they'rescared, they feel like they have
a huge new mountain to climband they have no direction.
Other countries have a muchmore organized system and a much
more unified system to say thisis what you need to do, here's
the phone number, here's thetimes that you show up X, y and
Z and it's all laid out for you.
(35:29):
So I think really either beingvery upfront with your doctor
about either concerns, fears,questions and really kind of
planting yourself in the chairand being the squeaky wheel to
find out exactly what you feellike you need to know, because,
especially with a diagnosis asbig as this, you have a lot of
(35:49):
questions and don't rely on DrGoogle to try to solve all those
problems for you, becausethere's way too much information
, a lot of it's conflicting.
You don't know exactly who youcan trust at this point and you
really need to talk with yourlocal providers to be able to
find out, especially in yourarea, where you can go for your
(36:11):
next steps and then starttalking to other people.
Get involved in a support group, because a lot of them have
already tried different programs, reached out for other supports
and have either found the goodones or found the ones that may
not feel like there is quality,and so save yourself a lot of
that legwork and then reach outto your local gyms and find out
(36:35):
who is offering programs andthen just try Talk to them.
Within a few minutes of askingsome questions, you'll find out
A who has a lot of knowledge onthe subjects, who's really
invested in it.
People, I think, come away fromus and they tell us that
they're like wow, you guysreally, really care, you guys
(36:57):
have really developed a reallycomprehensive program and you're
really doing this for us.
One thing that I'm incredibly,incredibly proud of is the fact
that you don't have to pay extrato be part of our program.
It's all included in membership.
We know your medications areincredibly expensive.
We know your doctor's copaysare incredibly expensive.
We know your doctor's co-paysare incredibly expensive, and
the biggest barrier to entry foryou should not be a gym
(37:20):
membership or programparticipation fees.
We want you to be here and wewant you to be here as
frequently as possible, so wewant to.
We want this to be an easy yesfor you and for us.
To be able to have supportgroups, art programs, music, six
day a week, fitness and all theother holistic opportunities
(37:41):
for you right in one placeshould make it an easy yes, and
we have the scientific and thephysical fitness and all of that
knowledge in one place, and ifwe could replicate this across
the country, that would be mydream to be able to have that be
easy for everybody who getsthat diagnosis.
Speaker 1 (38:00):
What role would you say community plays in the whole
process?
In terms of a person's beendiagnosed with Parkinson's, how
important is it for them to stayengaged and join groups like
the Punch Program?
But if they don't happen tohave one in their area, do you
have suggestions for peoplebased on your experience working
but with both of these groups,that they can join to stay
(38:23):
engaged?
Speaker 2 (38:24):
Yeah, the sense of community and just like that
sense of friendship, because youguys are all going through the
same diagnosis.
Everybody is in a differentstage of it, but having
everybody show up to class andknow like you're here for a
reason, I'm here for the samething, let's do this.
It's a very motivating mindset.
And then you create theseclose-knit friend groups where
(38:47):
you might go out for lunch, youmight take you and your loved
one out to a hike or a littleevent.
It's this great collaborativecommunity where you can do more
than just the exercise hike or alittle event.
It's this great collaborativecommunity where you can do more
than just the exercise programsor the support groups in, like
our facility itself.
You can take these friendshipsoutside.
Speaker 1 (39:04):
And just from a from personal experience
participating in both groupsthat we've actually it's you
know really become a family andwe've expanded beyond just the
group fitness class we do.
We get together weekly forpickleball, we started a walking
group.
One of the people in the punchprogram I went fly fishing with
because we've developed a goodfriendship, and then I'm going
(39:25):
out to Denver for the peddlingfor Parkinson's workshop through
the Davis Finney foundation andBrandon, who's the other
instructor that I was fortunateenough to meet in the
Parkinson's class, is going withme.
So it's really been a familytype of atmosphere, and so one
of the things that I wouldrecommend is that if you're
diagnosed with Parkinson's isstay engaged and continue to do
(39:47):
the hobbies and activities thatyou love to do, but try to find
other people with Parkinson's,and you'll find that a lot of
times you have similar interestin.
You know it'll go beyond just aclass and you might find
yourself going out and doingthings outside of class.
As we wind up here, I justwanted to get some practical
wisdom from both of you.
If you could give someone threeexercises that you would
(40:11):
recommend that they do on aregular basis to help them on
their Parkinson's journey.
What would it be?
Speaker 2 (40:17):
Mine would be a sit to stand, squat kind of motion
practices with stepping up onlike your staircase to help
mimic getting up on curves andgetting in and out of the car,
and another one would be justreaching up like a push press
kind of motion, shoulder presskind of motion.
(40:38):
That will help you continuebeing able to reach up something
for like a glass in yourcabinet or putting away dishes,
stuff like that.
Speaker 3 (40:46):
All right, I love Megs and I'm not going to steal
hers.
So I'm going to go a completelyopposite direction and I'm
going to say an everydaypractice of gratitude to focus
on all the good things that arestill going on in life Every day
.
Work on your flexibilitybecause again Parkinson's is
trying to steal it, so you haveto work on it.
And if you have a care partnerin your life, take at least a
(41:10):
one-day vacation from yourParkinson's with that care
partner every single week andjust don't even talk about it
and just be a couple again.
Go on a date, do things andjust don't even talk about
Parkinson's.
Speaker 1 (41:25):
All right.
So we've talked about peoplewith Parkinson's.
I think sometimes we I don'twant to say neglect, but a lot
of times in the shadow is thecaregiver.
I don't want to say neglect,but a lot of times in the shadow
is the caregiver.
So what advice would you havefor families, family members and
caregivers in terms of helpingsomeone on their Parkinson's
journey but then also being ableto take care of their own
(41:47):
personal needs?
Speaker 3 (41:49):
So I just completed my interviews for my research
candidates and it's been a veryinteresting process to learn
from a lot of wonderful womenacross the country.
What their expectations wereare what their needs are, and I
think one of the biggest thingsis, if you're a family member
(42:09):
and maybe not necessarily a carepartner, don't wait for
somebody to ask for help.
Just say give me a list ofthings that you need.
Take on automatically groceryshopping for these families,
lawn mowing, house cleaning, theboring stuff that we ourselves
don't want to do for our ownselves, but all the things that
(42:30):
just take up time, becausethere's so much that goes into
being somebody with Parkinson'sand being that care partner that
they are exhausted and theyjust need help.
And when they have downtime,their downtime should not be
laundry and grocery shopping andall of those things.
The thing that keeps on poppingup time after time when I ask
(42:53):
them questions is this is nothow I expected life to be.
This is not how I expectedretirement to be.
So if there's any way that youcan help them with having
something fun helping promotesomething fun in their day or
helping them if they want to goon a trip and help facilitate
that I know that's a bigger ask,but helping them to either go
on hikes or things that theyenjoy already, and just asking,
(43:19):
even just making phone calls.
We were talking about trying tofind these good programs out
there.
Be like, I'm going to makephone calls for you.
Who can I make phone calls for?
Do the research online, becausethat stuff takes time and it
doesn't seem like it's a bigdeal, but it's a huge deal.
And if you were the one thatresearched all those phone
numbers or made all those phonecalls and found out that the Y
has a program on this day and itcosts this much to attend, and
the J has a program on thesedays or this martial arts studio
(43:42):
is offering this class on thesedays, put it all together,
write it all up, email it tothem that would be humongous.
Speaker 1 (43:48):
All right, as we wrap up, I have one more question
for you.
If you dig deep into therecesses of your brains, working
with Parkinson's patients andfamilies, what's one piece of
advice that you would think ismost important that people could
walk away with and use as anaction step if they've been
diagnosed with Parkinson's?
(44:09):
Whether it's for the patient orthe family, or both?
Speaker 3 (44:13):
Keep a symptom tracker.
Chris has a great one on hiswebsite, livesatparkinsonscom.
Do it every single day, whetheryou think it's helpful or not,
because even the good days aregood to track, because then we
know it's working.
I think that's one of thebiggest things Show up for
yourself every day, show up foryour family every day, making
(44:36):
sure that you trust the process.
So if you have industry expertslike Megan and myself telling
you you need to do this, do this.
We're not telling you becausewe're trying to convince you to
do something that we don't thinkis helpful.
We do it because we have workedwith hundreds of people and we
know what the outcomes are goingto be if you do it and again,
sometimes you have to fake ittill you make it.
(44:56):
And if you're feeling crappysomeday, you still show up.
And even if you give 10% ofyour best effort, it's still
going to be better than if youdidn't show up, because the act
of showing up and continuingthat routine is the single most
important thing you can do tokeep yourself going, because
once you stop, it's so muchharder to get back on and start
(45:19):
up again.
Speaker 2 (45:20):
Yeah, continue doing what you love, keep pushing
yourself, whether it's joining anew exercise group or finding a
new support group, because youliving inside your own head and
as soon as you start havingthose negative thoughts it's
really hard to get out of.
So continue doing what you love, continue finding those support
groups.
Exercise those endorphins areso good for you.
Speaker 1 (45:42):
Well, I want to thank Susanna and Megan for being on
the podcast today and, to buildon what they said, I highly
recommend that you find a mentorif you can, because they push
you, they challenge you and theyget the best out of you, and
they've both been wonderful inhelping me on my Parkinson's
journey and I you know I'm veryfortunate and very grateful.
(46:04):
So thanks again for listeningand, before we leave, if you go
to visit liveparkinsonscom andsubscribe to the free monthly
newsletter, theparkinsonscom andsubscribe to the free monthly
newsletter, there's a lot ofinformation in there that you
can use on a daily basis andactionable information as well,
including upcoming webinars fromsome of the big foundations.
(46:24):
And then I want to thank youagain.
Thank you for listening and, asalways, stay healthy, stay
strong, keep a positive attitudeand live your best life with
Parkinson's.
Thanks again.
Hello, 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
.
Today, I'm blessed and honoredto be recording my 100th podcast
.
I'm truly in awe of having theopportunity to connect with so
(00:33):
many wonderful people livingwith Parkinson's who inspire me
every day.
I want to thank all of you thathave listened and connected
with me.
Your support has helped keep megoing and generating content
that helps you live your bestquality of life with Parkinson's
.
Over the last year and threequarters, I've been able to help
other people with Parkinson'sbecause you've tuned in and
(00:54):
interacted with me.
Two years ago, with nudging fromone of my guests on today's
show, I began researching how tocreate and launch a podcast.
I followed one of the quotesfrom a coffee mug that I
received from one of my formermanagers that said life begins
at the edge of your comfort zoneby Neil Donald Walsh, and I
(01:16):
really took that to heart andjust threw caution to the wind
and decided to launch the liveParkinson's live exceptional
life podcast.
Now my hope was that I couldhelp a few people live a great
quality of life with Parkinson's, thinking that maybe there
would be a few people in thelocal area where I live that
would listen.
Little did I know that I wouldhave a supportive community to
(01:37):
continue to push me to createnew content.
So, from the bottom of my heart, I want to thank each and every
one of you for tuning in on aweekly basis.
Now my commitment to you is tostrive to continue producing
content that helps you live yourbest life with Parkinson's.
Now I understand the dailystruggles and challenges that we
all face living withParkinson's on a daily basis,
(02:00):
but when we all stick together,share success stories and then
just bond with others that aregoing through similar challenges
Together, we're unstoppable ifwe stick together.
Now I want to switch gears andtalk about today's 100th episode
and why I chose to have twospecial friends on, because not
only have they been a tremendoushelp on my Parkinson's journey,
(02:22):
but their expertise andexperience is something that we
can learn from so that we canlive our best life with
Parkinson's.
So hopefully, after today'sepisode, you'll have some
information that's actionableand you can use that to improve
your life.
Now, I've always believed indivine intervention and
sometimes people come into ourlives when we need them most to
teach us, to guide us and tohave a positive impact on our
(02:45):
lives.
I've been fortunate to have twopeople come into my life who I
consider dear friends andmentors.
Now, I know we often think ofmentors as people who are
significantly older than we are,with more life experiences, but
a lot of times when we havethat mindset, we can limit
ourselves to the impact peopleyounger than we are can have on
our lives.
So, you see, it's not the ageof the person that defines a
(03:08):
good mentor, but it's thepersonal connection and the
learning that you get from yourmentor.
So today I want to introduceyou to two wonderful people who
are my mentors and friends andhave not only helped me to live
my best life with Parkinson's,but have also touched the lives
of others struggling with thedaily challenges of Parkinson's
and enabled them to live theirbest lives.
(03:31):
So let me introduce you toSusanna Gillespie and Megan
Anderson.
Susanna is the Vice Presidentof Membership and Recreation at
the Jewish Federation of GreaterHarrisburg.
She has a master's degree andis currently a doctoral
candidate, with her researchbeing conducted on female
caregivers and the overalleffect on their mental and
(03:53):
physical wellness in peopleliving with Parkinson's.
Now she's a certified fitnesstrainer and co-developer of the
Momentum and Punch programs forpeople living with Parkinson's,
and she's been married to herhusband, robert, for 22 years
and has two children, ethan andCharlotte.
Megan is the fitness andwellness director at the Jewish
(04:13):
Federation of Greater Harrisburgand she's a graduate of
Albright College and is acertified fitness trainer and
co-developer of the Punchprogram for Parkinson's and she
leads on the intakes of newpeople to the program.
She was a college lacrosseplayer and she still coaches for
the local high school lacrosseteam Now I've had the
(04:33):
opportunity to know and workwith both Susanna for about
eight years and Megan for fiveyears, through both group
fitness classes and Parkinson'sindividualized trainings and
mentor discussions, so I'd liketo welcome both of them to the
show.
All right, I wanted to lead itoff by asking you what initially
sparked your interest inworking specifically with people
(04:54):
who have Parkinson's.
Speaker 2 (04:55):
So I started working with people with Parkinson's
back when I worked with theMomentum program.
I was just a new personaltrainer trying to get experience
with all populations andSusanna was one of the people
that persuaded me to startteaching a group fitness class,
and it was specifically withthis group.
I had no idea what I was doing.
I literally learned everythingfrom Susanna, jen Shannon and
(05:19):
the other instructors there tohelp me engage a class with this
disease and after that I kindof fell in love with the program
and the people.
Speaker 3 (05:30):
I was part of.
I was personal training at thetime and I had gotten my degree
in biology and then, when theopportunity came up where we
wrote a grant to develop theMomentum program Pennsylvania is
one of the leading states withindividuals diagnosed with
Parkinson's disease due tochemical and agricultural runoff
, so it was a great opportunityto learn more about the
(05:53):
condition.
So that was really how I firstgot involved in it and then,
working with that knowledge andbeing able to personal train
individuals and then develop theactual classes, it was a great
experience to be able to look atit from an individual and group
mentality and then also to beable to help new instructors and
new trainers come up throughthe program as well.
(06:15):
That's really how I learnedabout it and fell in love with
it.
Speaker 1 (06:18):
That's great Thanks for sharing.
So how has your understandingof Parkinson's and movement
evolved over your years ofexperience?
Speaker 3 (06:26):
I think for me, at first we were really looking at
it from just the symptoms themotor symptoms and the cognitive
symptoms and then, as we gotdeeper into learning about the
individuals themselves, werealized the 360 degree effects
of what Parkinson's meant withmedication management, at-home
life and long-term care, and howthis really affected them on a
(06:48):
day-to-day basis with their carepartners, their families,
transportation issues and all ofthe things that really went
into what having Parkinson'smeant and what that really meant
for us as program developersand how we could best serve them
for us as program developersand how we could best serve them
(07:08):
.
Speaker 2 (07:08):
Yeah, at first, understanding the basics and
just the overlying blanket ofsymptoms of Parkinson's disease,
I was able to start training myclass the way that I thought
was just like the blanketstatement of everything.
And then with, unfortunately,the progression of disease, some
people have symptoms that aremore severe.
So I have to adjust the classor my one-on-one training.
So my understanding ofParkinson's has grown because I
(07:36):
realize it's not just XYZsymptoms.
They can become like XYZ pluslike a few more things that you
haven't seen before and you haveto adjust that way.
So every day could be differentfor each class and each
individual.
Great.
Speaker 1 (07:47):
Now, do you have a client?
Or can you think of a momentover your years working with
Parkinson's patients where yousaid to yourself geez, this is
my calling.
This is really.
What I want to do is work withpeople with Parkinson's.
Speaker 3 (08:01):
Well, I think for sure, Chris, you is one of them
for me, and then we've had acouple others, definitely in the
Momentum program, that havetouched us.
We've created really goodrelationships and seen firsthand
what the interaction with theirexercise and development has
been able to do with slowingtheir progression.
And I think one of the thingsthat I always love to see is
(08:24):
when they see themselves gettingbetter and then, conversely,
when they think they've beencured on some levels and they
stop coming and then theyrealize that the exercise must
be continual and then they stopcoming, then all of a sudden
they start coming back and wesee the change and the symptoms
have gotten worse and we canhave those those really hard
heart to heart conversations andthen bring them back and they
(08:44):
realize this is for the long runand we're going to be together
in it for forever.
Speaker 2 (08:51):
Yeah, there's a bunch of people I can think of, but
one individual that really stuckwith me was Dr Jay, who was a
cardiologist, and he came intothe program just very down on
himself and him moving and justbeing able to say I can complete
an hour class was just a bigthing for him.
And then he started theone-on-one training and we were
(09:13):
working on functional movementsjust being able to get out of
the car smoothly, getting up anddown the stairs.
When he did those one-on-onetrainings he was able to say
confidently that he was able todo these things better versus
those who just don't takeadvantage of the one-on-one
training.
So individuals like that andseeing them just improve
(09:33):
physically after those sessionswas a big impact on me, great
Thanks.
Speaker 1 (09:38):
Well, as you can see, they both have a lot of
experience dealing withParkinson's patients and I've
been fortunate to participate intwo different programs.
One was Momentum, and now theymoved to Harrisburg and they
started a program called Punch.
Can you tell us a little bitabout the Punch program and how
you and we'll talk maybe in aminute about enrollment, but how
(10:00):
does the Punch program helppeople with Parkinson's?
Speaker 3 (10:04):
So Punch is a little bit different, where we've
really combined a number ofdifferent formats.
When we arrived, they were justusing Rocksteady Boxing as a
format twice a week, which isgreat.
Rocksteady Boxing is awonderful class.
We came in and added in powermoves, flexibility training,
yoga, athletic movements.
(10:24):
We've since added in pedalingfor Parkinson's, which is a
class that Chris and Brandonteach.
We've also, through a grant,been able to offer move away PD,
which is creative movement, andlive music with a classically
trained pianist.
We've also been adding in artwith our artists in residence.
We're looking to add in evenmore with stretching classes.
(10:48):
So again, being able to reallyattack Parkinson's from the
total body and mind, being ableto offer red light therapy now
the assisted stretching,obviously personal training and
being able to completelyreimagine all of the things that
we know everybody needs andbeing able to offer it to our
(11:09):
participants and give them theabsolute best outcomes we
possibly can.
Speaker 1 (11:14):
So I'm personally involved with the Punch Program
as an instructor for Pedalingfor Parkinson's, but also as a I
don't want to say patient, butan enrollee, I guess I should
say and it has benefited me.
I've done several classes andit's helped me with my balance,
my gait and a bunch of otherthings.
But how do you incorporatebalance, strength, flexibility,
(11:39):
cognitive training into yoursessions but still make it fun
so that people actually want tocome?
Speaker 2 (11:45):
So I'm able to balance all those things by just
gauging what the class isphysically feeling and
emotionally feeling, because Ialways ask them on a scale of
one to 10, how they're feelingthat day, because there's going
to be some people who arefeeling like a 10, they can
tackle every exercise we'regoing to do.
Then we have some individualswho feel like a two.
So I always try to keep myselfupbeat and encourage everyone to
(12:08):
encourage each other.
The participants are reallygood at keeping each other
motivated in class and we're allsticking together making sure
we're okay.
I'm always playing fun music.
We're either singing or dancing.
I make the stations work ondifferent aspects, so a station
is balance or flexibility,hand-eye coordination, some
(12:31):
cognitive pieces.
I do a lot of numbers with theclass.
We'll do some math and there'ssome times where even Susanna
does this.
We'll spell out words whenwe're doing power moves and that
just gets your brain thinkingand your muscles moving.
So that mind body connection aswell.
One of the most importantpieces that I try to throw out
to everybody in class is thestrength piece, because you need
(12:52):
the muscle mass to help withappropriate reception of
movement and that is just, Ithink, one of the biggest pieces
for them, because when you'reaging you are unfortunately
losing muscle mass.
So if you keep up with thestrength program and you keep
yourself motivated, find funthings out of it, you're still
going to show up to class.
Speaker 1 (13:11):
How do you do intakes ?
When someone calls up and saysthey want to be, you participate
in the punch program.
Are there certain tests thatyou do and how do you measure
success?
Speaker 3 (13:24):
Yeah, so when they call in and request some
information, we've got a coupleof different people that can
answer a lot of the questionsand then individuals will meet
with either Megan or myself.
We go through a pretty standardbrief medical history.
We find out when you werediagnosed, what symptoms you
initially had, what symptoms younow have, what medications
(13:44):
you're on.
Then we run through a timed upand go walking backwards one
foot balance, on and off thefloor test.
Those are also tests that we'llcomplete every three months and
track your progress, and we canshare those tests back with you
so you can share those backwith your neurologist or
movement disorder specialist.
We also do some qualitativetests where we're asking you how
you're feeling about startingthe program, your faith that
(14:07):
exercise can help you change,how you feel like your
neurologist or movement disorderspecialist is listening to and
addressing your concerns, whoyou have as a care partner along
the process, and we also askthese of your care partner if
they're present too, because oneof the things that I think
we're both really passionateabout is making sure that you
are advocating for yourself, andif you're not advocating for
(14:29):
yourself, we're making sure thatwe are the ones to empower you
to do that, because Parkinson'sis very serious and we want to
make sure that you are takingthe best care of yourself and
that your care team is workingas hard as you're going to be
working in your class foryourself.
So you really have to know thatyour medical team works for you,
and if they're not working foryou, then it's time to fire them
(14:52):
and move on to a care teamthat's going to be your biggest
advocates, because your medicinehas to work, your exercise has
to work and your mind has to bein the right place.
So we really try to assess thaton your intake as part of the
process.
Speaker 1 (15:07):
Now one of the things that I've noticed being a part
of both of the programs is justthe camaraderie and almost a
family type of setting.
Would you agree that in termsof the punch program, that you
see the same thing, that peopleconnect because we share similar
challenges and then evencaregivers can get involved?
(15:28):
But can you think of a successstory from the punch program
where someone started and theymight not have had the
confidence to think, oh, I cando this, and then now you've
seen a vast improvement?
Can you share a success storyfrom someone in the program?
Speaker 2 (15:47):
I actually recently talked to one of our
participants is.
I'll keep his name confidential, but he has been following more
.
He's super eager to do stuff,he wants to be able to do all
the things and his mind goes ahundred miles per minute versus
(16:07):
his body.
His body's moving slower thanit wants to and we've talked
about him going to his doctorand asking for an ADHD diagnosis
.
It took weeks and weeks andweeks for him to realize like he
actually needs to go, advocatefor himself, and the other day
he comes up to me and goes I gotthe diagnosis, I'm taking the
medication, my mind's movingslower but my body's moving more
(16:31):
intentionally because he wouldmove again, like he would move
so quick and his mind's quickerwhere he'll have this tendency
to tumble and take falls, buthe's one to always get back up
and try again.
He's never down on himself Likehe's funny when he falls because
he's like I'm fine, I'm fine,I'm fine.
But it's one of those thingswhere, if you know your mind's
(16:52):
going faster than your body, yougot to be intentional with your
movement.
And the whole mind-bodyconnection thing plays a big
part, especially with theParkinson's disease, because you
need to be able to control yourmovements, taking deep breaths,
stuff like that.
But having this diagnosis forhim to help him improve just
slow him down and having moreintentional movements is huge.
Speaker 3 (17:13):
And.
Speaker 2 (17:13):
I know who you're talking about.
Speaker 3 (17:14):
So it's really important too, because we see
these individuals multiple dayseach week and he's been doing a
great job because he's beentaking advantage of many of our
different aspects of the programbetween classes and assisted
stretching and red light andpersonal training.
So we notice really greatsuccess when people interact
(17:35):
with us on more than justclasses but the additional
services.
But he's definitely one of theindividuals where we notice when
he's not there and other peoplein class notice when he's not
there.
So when I came in to teachclass the one day, I said, hey,
we're so-and-so, and people arelike, oh yeah, he hasn't been
here for a couple of days and sowe were calling him and making
sure that he's OK.
So we are always looking outfor each other, the class
(17:58):
members are looking out for eachother and the socialization is
such a huge part of anyParkinson's program Because
obviously there's tons ofYouTube videos, there's tons of
exercise programs that you couldaccess over a video or a DVD.
But being together it helps tomotivate you when you're having
a bad day.
You can help encourage otherswhen you're having a great day.
(18:18):
That really involves the mindand it gets your heart involved
and with that emotion comes evengreater success.
Speaker 1 (18:25):
Great Thanks.
Let's switch gears a little bitnow, if we can, and talk a
little bit about how exercisecan really help your movement.
And you know, I know a lot ofpeople when they're first
diagnosed, they think I don'twant to exercise because it's
going to make me tired, I'mgoing to be fatigued or I don't
feel like it.
But one thing I've learned over15 years is that exercise is
(18:47):
the key to helping you staymobile, helping you continue to
be able to participate in thethings that you like to do.
So, if we can, let's talk alittle bit about what the
research says on exercise andmovement.
Can you share a little bit ofyour experience, of what, maybe
what you've seen?
Speaker 3 (19:06):
So we definitely know the exercise, like Chris was
saying, parkinson's just makesyou want to slow down, makes you
a little bit more apathetic togetting up and moving.
So it is a huge challenge andyou really have to kind of fake
it till you make it.
And we'll.
We'll have this conversationwith a lot of people, especially
when those days when you're notfeeling it and I tell people
just promise, promise me,promise us that you're going to
(19:27):
show up for five minutes.
If you show up for five minutesyou're probably going to stay
for 10.
And if you stay for 10, then 15is not so hard and then by the
end of it you're probably goingto stay for that 50 minute class
.
So we know that exercise, justlike our brains, is that muscle
that has to come in and bestretched, be flexed and become
permanent in your body.
(19:48):
Our muscles also have thatmuscle memory and the more you
do things, the more your body isactually going to crave the
energy our flexibility to theflexibility builds.
You can't just do work onflexibility one day and have
those results last, because withParkinson's we know the
rigidity keeps on trying toattack and make you tighter and
tighter and tighter, so you keepon having to work against it,
(20:10):
to keep on, if nothing else,maintaining baseline.
But to see improvements you'regoing to have to really work to
fight after it.
So the science is definitelyshowing that we have to be
working on the exercise daily.
We joke that it's the one drugthat we can't overdose on.
So the more exercise you do,the better, and we know we
really have to diversify theexercise.
So it's not just one kind ofexercise.
(20:30):
We have to be doing balanceexercise, things like Tai Chi,
yoga.
We need to be doing bigathletic, explosive movements.
We need to be doing bigathletic, explosive movements.
We need to be doing things thatmake our movements bigger.
We need to be doing athleticdrills.
We need to be doing endurancework, strength work.
You can't just do one.
You have to do a littlepotpourri of everything and
varying it throughout the day,and that actually works well,
because there are some days thatyou're going to feel good and
(20:51):
you're going to have a lot ofenergy.
So you capitalize on that anddo the harder things and on the
days when you're not feeling asgreat, you can slow down and
work on the less intense things,like the Tai Chi and the dance
and the balance work andeventually, hopefully, it all
evens out.
Speaker 2 (21:06):
Yeah.
So there was a research studydone recently that plyometrics
is huge for those withParkinson's disease.
So when I say plyometrics, it'slike jumping and single leg
work and that explosive piece,because it's working on that
balance it.
It makes it fun because you'renot thinking like, oh, I'm doing
this for balance reasons andwhatnot.
(21:26):
You're doing athletic movementsthat make you feel like good
afterwards, like if you're ableto jump on a, like on your foot,
on your left foot, like onetime, do two times, then three
times, your confidence goes upand then you're coming to the
next class saying, okay, whatcan I do today?
Am I able to do five jumpstoday?
Am I able to do a ski jump for10 repetitions?
(21:48):
Those endorphins that are goingthrough your brain after
exercise is what's going to keepyou coming back and making
yourself better, going to keepyou coming back and making
yourself better.
So yeah, the research isshowing so much how exercise
really does improve theParkinson's symptoms.
Speaker 1 (22:04):
I know when a lot of people are diagnosed that they
think I don't like going to agym.
I'm intimidated when I go to agym.
So how do you overcome thatinertia to get people to say I
can do this, I can come to thefitness center and I can work
out with other people in it andnot feel embarrassed?
Because I know a lot of usliving with Parkinson's.
(22:26):
If you're having a tremor oryour balance is off, a lot of
times people don't want to goout in public because they
they're self-conscious.
So, and especially then to agym, because there are people
when you say, oh, let's go tothe gym or the fitness center,
they're thinking of these peoplelifting these big, heavy
weights and they're thinking Ican't do that.
So do you have suggestions foron how to get people to become
(22:50):
engaged in these programs?
Speaker 3 (22:52):
I think one of the great things is just like when
you want to go out to eat, youkind of think, what do I want to
eat today?
And if you want to eat Chinesefood, you go to a Chinese food,
you don't go to a Mexicanrestaurant.
And, just like Chris is saying,you need to find the fitness
center that's going to supportyour needs, and there are
definitely certain gyms that arecatering more towards a very
(23:13):
heavy duty weightlifting crowd.
There are gyms that are morecatering towards, just like, a
Pilates crowd.
So you want to find a gymthat's going to be catering and
have specific programming to aParkinson's crew.
So I'd say, definitely Googlethings, look for reviews, reach
out, talk to your neurologist alot of them, and we've done a
lot of effort to reach out toneurologists to make sure that
(23:35):
they know what we're offering.
Being able to find and talk topeople that have some already
good knowledge of whatfacilities have a good program
is going to be key.
And then, if you have otherpeople maybe in a support group
or maybe through the practicesthat you're going to that you
can talk to in advance to say,hey, is this a good place, while
I feel at home here.
(23:55):
I think that really helps tospeak to that as well.
Go on a tour, find out, seek itout.
One thing that when the JewishFederation where we are now it's
the Simons Family FitnessCenter is what the actual gym is
called.
When we moved locations lastyear into the new building, the
actual Parkinson's program thepunch program actually moved
locations into a place that wasa little bit more out in the
(24:16):
open where it kind of had beenoff, into a side room, and one
of the individuals came up to me.
They was like well, how is thisgoing to work?
Like people are going to know Ihave Parkinson's.
I first looked at him and Isaid well, they're only going to
know you have Parkinson's a ifyou tell them.
And I said, b, I think it'sgreat, because then you're going
to have a bunch.
And now nobody even mentions it.
Because as soon as they walk inthe door they know that
(24:37):
everybody is there to supportthem and make sure that they're
okay Extra sets of eyes andeverybody is there to make sure
they're having the absolute bestexperience.
And now it's not even a thing.
Now nobody even thinks twiceabout it.
We have T-shirts that are madethat say Punch Program on it,
has a big fist on it, and theywear them with pride and so we
have birch for them and itbecomes a club and becomes part
(25:01):
of their source of belonging,and it's not something ever to
be ashamed of or to cower awayfrom.
It becomes something that makesthem know that we love them,
that they have a place and thattheir place is of huge
importance to us and it's partof our mission.
Speaker 1 (25:17):
Now one of the things I I've seen over the years,
especially participating in alot of the group Parkinson's
fitness classes is people thatthink they can't do something.
And then when you give them thatpush or nudge and they actually
they see that step change andall of a sudden their face
lights up and they think, wow, Ican do this.
(25:37):
And you know, I've seen itmultiple times where someone
comes in and they're very,they're intimidated, or because
they look at what other peoplein the group are doing and they
and they and they're thinking tothemselves I can't do that.
When you, when you challengethem, then all of a sudden they
start to realize that I can dothis, and then you push them,
then all of a sudden they startto realize that I can do this,
(25:58):
and then you, you push them moreand then pretty soon they're
down the road a lot farther thanthey ever thought they would be
.
So can you talk a little bitabout how you develop your
program so that you push peopleto a point that they they're
capable of doing it, but notgoing too far where it's going
to cause some type of setback?
Speaker 2 (26:19):
Yeah, one of the things I do in class is if we're
doing multiple sets of anexercise, I will tell them to
start off how they feelcomfortable with If the squat is
only knees at 90 degrees, it'sknees at 90 degrees the last set
.
If they're feeling really good,they're warmed up.
I'm like push yourself a littlebit, try to sit down a little
lower, try to jump a littlefurther.
(26:41):
It's all based on yourcomfortability, but I'm always
going to be sitting therelooking at you saying I know you
can do more, let's do it.
I'm going to be right therenext to you and making sure
you're okay.
And once they're able to dolet's say, squat down a little
lower or take a lunge a littlebit bigger they feel confident
in themselves and then the nextclass they come in and they're
(27:02):
doing that big step right away.
It's just having that supportsystem of one everybody and
having us as instructors beingthere to motivate and push them.
They find themselvesprogressing in the exercise
versus regressing findthemselves progressing in the
exercise versus regressing.
Speaker 1 (27:23):
One of the things that I've learned from both of
you is incorporating multipletypes of exercises into one
exercise, so doing cognitivebalance, strength, and it might
all be incorporated into oneexercise.
So can you, if you had threeexercises, or could you, give us
three exercises that you mightbe able to incorporate a
strength, a balance and acognitive exercise so that
(27:45):
people that aren't fortunateenough to have a program in
their area might be able to doat home after they get approval
from their doctor?
Speaker 3 (27:51):
One of my classic ones that I love, and you can
kind of titrate this one to yourability.
If you're sitting on a chairand if you were to have a pillow
at home, you could put onepillow under one foot and your
other foot's on the floor andyou can do your squat sit to
stand that way.
So one foot on the pillow, onefoot on the floor.
Stand up.
When your foot is on the pillowyou have a little bit more of a
(28:14):
balance challenge because yourfoot is interacting with the
pillow a much different way thanyour foot is interacting with
the floor.
So already your foot is alittle bit different.
You've got the balancechallenge.
Every time you stand up and sitdown, I want you to spell a word
and then you want to spell itbackwards.
So by how long that word is?
It's going to change howcomplicated that cognitive
challenge is.
Then, if you're feeling evenbetter about how you're standing
(28:37):
up and sitting down, take thepillow away and just be on
tiptoes on the one foot.
So the ball of your foot isdown, the heel of your foot is
up.
Stand up, sit down.
If that still feels good.
When you stand up, lift yourknee up and balance on one foot.
Put the foot down, sit down andkeep on doing that, either with
saying words forwards andbackwards, or counting forwards
(28:57):
and backwards.
Skip counting.
Counting by fractions.
Counting by fractions isprobably one of our most hated
activities in class, but alsothen probably one of the ones
that we all need to work on themost, because it is so tricky.
And if it's tricky, that meansit's working.
Our brain and a lot ofdifferent neurons are firing.
Speaker 2 (29:14):
One of the drills I do in class I have these colored
dots.
They're like rubber dots thatstick to the floor.
At home you can take differentcolored painter's tape and just
tape them around in a circle.
So there's like I have a reddot, blue dot, orange dot, green
dot, like the rainbow, and whatI do is I write a pattern of
(29:34):
the color.
So you have to lunge to red,lunge to green, lunge to purple.
You have to do that both withthe left and right foot.
That's challenging you to onework on your lunge, have that
weight shift and balance pieceand you're also cognitively
trying to memorize that pattern.
So once you're comfortable witha three color pattern, go up to
four.
(29:54):
If you're comfortable with four, go up to five and that will
help also with the repetitionsand just working on that
strength, that single legstrength and that weight shift.
Speaker 1 (30:03):
Just as a personal example, one of the ones that
always sticks in my head is Iwas training with Susanna and
she had me stand on a Bosu balland hold a kettlebell and then I
had to say the states inalphabetical order and went
through that one and I thought,oh, I'm done with that.
And then she said, okay, well,now let's do all the state
(30:24):
capitals in alphabetical order.
So I think she was trying tokill me that day.
But no, just seriously.
But it really did.
It was a challenge.
I couldn't even do that one.
I was impressed that you could.
So I felt so much.
I mean, it was like, wow, Icould actually do that.
So a lot of times we think thatwe can't do something, but when
someone's there to push you,you'd be surprised at the things
(30:45):
that you can achieve, andthat's one of the reasons that I
highly suggest.
If you can get into groupfitness classes whether it's a
Parkinson's class or not you'regoing to see great improvement
and they can always modifythings to make it so that you
can participate.
So don't ever feel like youcan't participate in any type of
class.
(31:05):
You tell the instructor thatyou need some modifications and
they're always happy to help youout.
So that was one of the onesthat really stuck in my mind
over the last couple of years.
And then the other one wasMegan had us walking on there's
these plastic rocks and we wouldhave to walk on and then skip
to different colors and saydifferent and maybe come up with
(31:28):
a fruit or something at thesame time.
So it's definitely great toincorporate a lot of different
exercises into one type ofactivity, but again, you always
want to make sure that you getclearance from your doctor first
and let them know what type ofexercise program that you're
participating in.
All right, so let's changecourse again, and I want to talk
a little bit about mentorship,and I mentioned at the beginning
(31:50):
that a lot of times we thinkthat, oh well, a mentor has to
be someone that has more lifeexperience or is older than you.
But both Megan and Susanna aremy mentors and they're great at
helping me with questions that Ihave and just giving me overall
guidance.
So again I want to ask both ofyou what's it been like working
(32:12):
with me over the years and howhave you seen me grow and
improve or adapt?
Speaker 3 (32:19):
It's always been a joy to work with Chris because
Chris has always attackedeverything I think that we've
ever given him to work on.
I always laugh because he getsup early and he's always
accomplished about 17 thingsbefore, I think, I've even
started my day, so that's alwaysbeen impressive.
But he takes everything and heworks really, really hard at
things about 17 things before, Ithink, I've even started my day
, so that's always beenimpressive.
But he takes everything and heworks really, really hard at
things.
We all have our ups and downsand he's had moments where he
(32:41):
feels like he needs a newchallenge, and he needed a new
challenge and I said, hey, whydon't you share your knowledge?
Because he has a lot of greatknowledge from his education and
his work experience, and so Iloved it that he had written his
book and he's working throughthis podcast and now impacting
people all over the world andhundreds of countries and
(33:02):
hundreds of cities.
And whenever I think the thingthat I think we've both noticed
whenever we've had individualsthat start the program and are
unsure or don't have a lot ofself-belief that they can either
do it or be a part of somethingwhere other people are around,
we'll just ask them like hey,can you talk to this person?
And without a doubt he's.
(33:23):
You know, he's like yep, giveme their name and he goes and
talks to them.
And people that don't thinkthat they can do it, after
talking to Chris for you know,15 minutes all of a sudden
really see belief in their ownability to do something, and
it's been wonderful to see himstep into those roles and share
not only his ability but hisfaith in others, and he, I know,
(33:45):
also believes in the two of usa whole lot, which has helped us
in so many ways through overthe course of years.
So just being able to share ourlove and our ability to try to
help as many people as we canthrough this process has been
great.
Speaker 2 (33:58):
Yeah, working with Chris has been amazing.
He is a motivator for me butalso a motivator for all the
people he's touched in his life,like the momentum program.
I just remember you being inclass and just motivating those
who are still just a little shy,a little timid of pushing
themselves out of their comfortzone.
And even with the punch program, with starting move away, pd,
(34:20):
you stepped in and you took theclass and you told everyone
about it and everyone followedyou after.
So people really do trust youand they listen to you, which is
amazing.
Speaker 1 (34:29):
Well, thanks.
What recommendations would youhave for people that are newly
diagnosed?
Then I mean, because it's it'sreally's really a shocking thing
when your doctor tells you, oh,you have Parkinson's disease,
and you're thinking, oh great,what do I do next?
Where do I go?
So what type of recommendationswould you have for people that
are newly?
Speaker 3 (34:47):
diagnosed is either we found from talking with a lot
of our participants is theyfeel like they've been left with
the diagnosis and not a lot ofdirection from their doctor or
provider, whoever that may be orthey're told they need to do a
lot of things, but then theydon't know where to start.
(35:09):
They're overwhelmed, they'rescared, they feel like they have
a huge new mountain to climband they have no direction.
Other countries have a muchmore organized system and a much
more unified system to say thisis what you need to do, here's
the phone number, here's thetimes that you show up X, y and
Z and it's all laid out for you.
(35:29):
So I think really either beingvery upfront with your doctor
about either concerns, fears,questions and really kind of
planting yourself in the chairand being the squeaky wheel to
find out exactly what you feellike you need to know, because,
especially with a diagnosis asbig as this, you have a lot of
(35:49):
questions and don't rely on DrGoogle to try to solve all those
problems for you, becausethere's way too much information
, a lot of it's conflicting.
You don't know exactly who youcan trust at this point and you
really need to talk with yourlocal providers to be able to
find out, especially in yourarea, where you can go for your
(36:11):
next steps and then starttalking to other people.
Get involved in a support group, because a lot of them have
already tried different programs, reached out for other supports
and have either found the goodones or found the ones that may
not feel like there is quality,and so save yourself a lot of
that legwork and then reach outto your local gyms and find out
(36:35):
who is offering programs andthen just try Talk to them.
Within a few minutes of askingsome questions, you'll find out
A who has a lot of knowledge onthe subjects, who's really
invested in it.
People, I think, come away fromus and they tell us that
they're like wow, you guysreally, really care, you guys
(36:57):
have really developed a reallycomprehensive program and you're
really doing this for us.
One thing that I'm incredibly,incredibly proud of is the fact
that you don't have to pay extrato be part of our program.
It's all included in membership.
We know your medications areincredibly expensive.
We know your doctor's copaysare incredibly expensive.
We know your doctor's co-paysare incredibly expensive, and
the biggest barrier to entry foryou should not be a gym
(37:20):
membership or programparticipation fees.
We want you to be here and wewant you to be here as
frequently as possible, so wewant to.
We want this to be an easy yesfor you and for us.
To be able to have supportgroups, art programs, music, six
day a week, fitness and all theother holistic opportunities
(37:41):
for you right in one placeshould make it an easy yes, and
we have the scientific and thephysical fitness and all of that
knowledge in one place, and ifwe could replicate this across
the country, that would be mydream to be able to have that be
easy for everybody who getsthat diagnosis.
Speaker 1 (38:00):
What role would you say community plays in the whole
process?
In terms of a person's beendiagnosed with Parkinson's, how
important is it for them to stayengaged and join groups like
the Punch Program?
But if they don't happen tohave one in their area, do you
have suggestions for peoplebased on your experience working
but with both of these groups,that they can join to stay
(38:23):
engaged?
Speaker 2 (38:24):
Yeah, the sense of community and just like that
sense of friendship, because youguys are all going through the
same diagnosis.
Everybody is in a differentstage of it, but having
everybody show up to class andknow like you're here for a
reason, I'm here for the samething, let's do this.
It's a very motivating mindset.
And then you create theseclose-knit friend groups where
(38:47):
you might go out for lunch, youmight take you and your loved
one out to a hike or a littleevent.
It's this great collaborativecommunity where you can do more
than just the exercise hike or alittle event.
It's this great collaborativecommunity where you can do more
than just the exercise programsor the support groups in, like
our facility itself.
You can take these friendshipsoutside.
Speaker 1 (39:04):
And just from a from personal experience
participating in both groupsthat we've actually it's you
know really become a family andwe've expanded beyond just the
group fitness class we do.
We get together weekly forpickleball, we started a walking
group.
One of the people in the punchprogram I went fly fishing with
because we've developed a goodfriendship, and then I'm going
(39:25):
out to Denver for the peddlingfor Parkinson's workshop through
the Davis Finney foundation andBrandon, who's the other
instructor that I was fortunateenough to meet in the
Parkinson's class, is going withme.
So it's really been a familytype of atmosphere, and so one
of the things that I wouldrecommend is that if you're
diagnosed with Parkinson's isstay engaged and continue to do
(39:47):
the hobbies and activities thatyou love to do, but try to find
other people with Parkinson's,and you'll find that a lot of
times you have similar interestin.
You know it'll go beyond just aclass and you might find
yourself going out and doingthings outside of class.
As we wind up here, I justwanted to get some practical
wisdom from both of you.
If you could give someone threeexercises that you would
(40:11):
recommend that they do on aregular basis to help them on
their Parkinson's journey.
What would it be?
Speaker 2 (40:17):
Mine would be a sit to stand, squat kind of motion
practices with stepping up onlike your staircase to help
mimic getting up on curves andgetting in and out of the car,
and another one would be justreaching up like a push press
kind of motion, shoulder presskind of motion.
(40:38):
That will help you continuebeing able to reach up something
for like a glass in yourcabinet or putting away dishes,
stuff like that.
Speaker 3 (40:46):
All right, I love Megs and I'm not going to steal
hers.
So I'm going to go a completelyopposite direction and I'm
going to say an everydaypractice of gratitude to focus
on all the good things that arestill going on in life Every day
.
Work on your flexibilitybecause again Parkinson's is
trying to steal it, so you haveto work on it.
And if you have a care partnerin your life, take at least a
(41:10):
one-day vacation from yourParkinson's with that care
partner every single week andjust don't even talk about it
and just be a couple again.
Go on a date, do things andjust don't even talk about
Parkinson's.
Speaker 1 (41:25):
All right.
So we've talked about peoplewith Parkinson's.
I think sometimes we I don'twant to say neglect, but a lot
of times in the shadow is thecaregiver.
I don't want to say neglect,but a lot of times in the shadow
is the caregiver.
So what advice would you havefor families, family members and
caregivers in terms of helpingsomeone on their Parkinson's
journey but then also being ableto take care of their own
(41:47):
personal needs?
Speaker 3 (41:49):
So I just completed my interviews for my research
candidates and it's been a veryinteresting process to learn
from a lot of wonderful womenacross the country.
What their expectations wereare what their needs are, and I
think one of the biggest thingsis, if you're a family member
(42:09):
and maybe not necessarily a carepartner, don't wait for
somebody to ask for help.
Just say give me a list ofthings that you need.
Take on automatically groceryshopping for these families,
lawn mowing, house cleaning, theboring stuff that we ourselves
don't want to do for our ownselves, but all the things that
(42:30):
just take up time, becausethere's so much that goes into
being somebody with Parkinson'sand being that care partner that
they are exhausted and theyjust need help.
And when they have downtime,their downtime should not be
laundry and grocery shopping andall of those things.
The thing that keeps on poppingup time after time when I ask
(42:53):
them questions is this is nothow I expected life to be.
This is not how I expectedretirement to be.
So if there's any way that youcan help them with having
something fun helping promotesomething fun in their day or
helping them if they want to goon a trip and help facilitate
that I know that's a bigger ask,but helping them to either go
on hikes or things that theyenjoy already, and just asking,
(43:19):
even just making phone calls.
We were talking about trying tofind these good programs out
there.
Be like, I'm going to makephone calls for you.
Who can I make phone calls for?
Do the research online, becausethat stuff takes time and it
doesn't seem like it's a bigdeal, but it's a huge deal.
And if you were the one thatresearched all those phone
numbers or made all those phonecalls and found out that the Y
has a program on this day and itcosts this much to attend, and
the J has a program on thesedays or this martial arts studio
(43:42):
is offering this class on thesedays, put it all together,
write it all up, email it tothem that would be humongous.
Speaker 1 (43:48):
All right, as we wrap up, I have one more question
for you.
If you dig deep into therecesses of your brains, working
with Parkinson's patients andfamilies, what's one piece of
advice that you would think ismost important that people could
walk away with and use as anaction step if they've been
diagnosed with Parkinson's?
(44:09):
Whether it's for the patient orthe family, or both?
Speaker 3 (44:13):
Keep a symptom tracker.
Chris has a great one on hiswebsite, livesatparkinsonscom.
Do it every single day, whetheryou think it's helpful or not,
because even the good days aregood to track, because then we
know it's working.
I think that's one of thebiggest things Show up for
yourself every day, show up foryour family every day, making
(44:36):
sure that you trust the process.
So if you have industry expertslike Megan and myself telling
you you need to do this, do this.
We're not telling you becausewe're trying to convince you to
do something that we don't thinkis helpful.
We do it because we have workedwith hundreds of people and we
know what the outcomes are goingto be if you do it and again,
sometimes you have to fake ittill you make it.
(44:56):
And if you're feeling crappysomeday, you still show up.
And even if you give 10% ofyour best effort, it's still
going to be better than if youdidn't show up, because the act
of showing up and continuingthat routine is the single most
important thing you can do tokeep yourself going, because
once you stop, it's so muchharder to get back on and start
(45:19):
up again.
Speaker 2 (45:20):
Yeah, continue doing what you love, keep pushing
yourself, whether it's joining anew exercise group or finding a
new support group, because youliving inside your own head and
as soon as you start havingthose negative thoughts it's
really hard to get out of.
So continue doing what you love, continue finding those support
groups.
Exercise those endorphins areso good for you.
Speaker 1 (45:42):
Well, I want to thank Susanna and Megan for being on
the podcast today and, to buildon what they said, I highly
recommend that you find a mentorif you can, because they push
you, they challenge you and theyget the best out of you, and
they've both been wonderful inhelping me on my Parkinson's
journey and I you know I'm veryfortunate and very grateful.
(46:04):
So thanks again for listeningand, before we leave, if you go
to visit liveparkinsonscom andsubscribe to the free monthly
newsletter, theparkinsonscom andsubscribe to the free monthly
newsletter, there's a lot ofinformation in there that you
can use on a daily basis andactionable information as well,
including upcoming webinars fromsome of the big foundations.
(46:24):
And then I want to thank youagain.
Thank you for listening and, asalways, stay healthy, stay
strong, keep a positive attitudeand live your best life with
Parkinson's.
Thanks again.
Popular Podcasts
Dateline NBC
Current and classic episodes, featuring compelling true-crime mysteries, powerful documentaries and in-depth investigations. Special Summer Offer: Exclusively on Apple Podcasts, try our Dateline Premium subscription completely free for one month! With Dateline Premium, you get every episode ad-free plus exclusive bonus content.
The Breakfast Club
The World's Most Dangerous Morning Show, The Breakfast Club, With DJ Envy, Jess Hilarious, And Charlamagne Tha God!
Crime Junkie
Does hearing about a true crime case always leave you scouring the internet for the truth behind the story? Dive into your next mystery with Crime Junkie. Every Monday, join your host Ashley Flowers as she unravels all the details of infamous and underreported true crime cases with her best friend Brit Prawat. From cold cases to missing persons and heroes in our community who seek justice, Crime Junkie is your destination for theories and stories you won’t hear anywhere else. Whether you're a seasoned true crime enthusiast or new to the genre, you'll find yourself on the edge of your seat awaiting a new episode every Monday. If you can never get enough true crime... Congratulations, you’ve found your people. Follow to join a community of Crime Junkies! Crime Junkie is presented by audiochuck Media Company.