April 28, 2025 • 29 mins
In this episode of The Paid Leave Podcast we discuss Parkinson's disease, what it is, what it does, and how to treat it. Parkinson's Awareness Month is observed in April, and is an opportunity to increase awareness about the ailment and its symptoms, as well as to support victims. National Parkinson's day is observed on April 11 every year to raise awareness about this medical condition and its severity. Muhammad Ali and Michael J Fox are the most well-known people to suffer from Parkinson's disease. Joining in on this conversation is Holly Seymour, the Program Director for the Connecticut Chapter of the American Parkinson's Disease Association, also known as APDA. Heather Pierce joins us as a caregiver. She supported her dad after his diagnosis of Parkinson's in 2019 and was his caregiver and advocate before he passed in 2021. She's now a board member for APDA and leads a support group where she helps those with PD and their care partners navigate the changes of life with PD. She also owns a company called ClearView Senior Living Advisors, where she helps families connect to resources. She's starting school in Vermont to be an end-of-life doula to further the support she can offer families. She's also a community educator for the Alzheimer's Association.
Holly explains Parkinson's symptoms, treatments, and the importance of support groups. Heather recounts her father's personal journey with Parkinson's, highlighting the challenges of caregiving. They emphasize the significance of mental health support and the benefits of Connecticut's Paid Leave program for those diagnosed who are still working, and to their caregivers. The podcast aims to raise awareness and provide resources for those affected by Parkinson's.
To get in touch with or to join a support group with the APDA please go to: apdaparkinson.org/CT or call 860-996-4276.
To get in touch with Heather Pierce go to her website at: Clearviewseniorlivingadvisor.com or call or call 860-733-9506.
For information or to apply for benefits please go to: ctpaidleave.org
https://ctpaidleave.org/s/?language=en_US
https://www.facebook.com/CTPaidLeave
https://www.instagram.com/ctpaidleave/
https://twitter.com/CTPaidLeave
https://www.youtube.com/results?search_query=ct+paid+leave
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Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Nancy Barrow (00:01):
Hello Connecticut, and welcome to The Paid Leave
Podcast. The title basicallysays it all. I'm Nancy Barrow,
and I will be delving into thisnew state program and how it can
help you and your family. Thispodcast will give you
information you should knowabout Connecticut Paid Leave and
maybe just a little bit more.
Connecticut Paid Leave bringspeace of mind to your home,
(00:22):
family and workplace. Welcome toThe Paid Leave Podcast.
Parkinson's Awareness Month isobserved in April, and is an
opportunity to increaseawareness about the ailment and
its symptoms, as well as tosupport victims national.
Parkinson's day is observed onapril 11 every year to raise
(00:43):
awareness about this medicalcondition and its severity.
Muhammad Ali and Michael J Foxare the most well known people
to suffer from Parkinson'sdisease. And joining in on this
conversation about Parkinson'sdisease is Holly Seymour, the
Program Director for theConnecticut Chapter of the
American Parkinson's DiseaseAssociation, also known as
APDA. And Heather Pierce joinsus as a caregiver. She supported
(01:08):
her dad after his diagnosis ofParkinson's in 2019 and was his
caregiver and advocate before hepassed in 2021 she's now a board
member for APDA and leads asupport group where she helps
those with PD and their carepartners navigate the changes of
life with PD. And she also ownsa company called ClearView
(01:29):
Senior Living advisors. Shehelps families connect to
resources, and she's soonstarting school in Vermont to be
an end of life doula to furtherthe support she can offer
families. She's also a communityeducator for the Alzheimer's
Association. So welcome to ThePaid Leave Podcast. Holly and
Heather. I'm so sorry aboutYourDad.
Heather Pierce (01:50):
. Thank you for having us.
Holly Seymour (01:51):
Thank you Nancy.
Nancy Barrow (01:52):
Holly can you give me maybe just a little bit of
background? What was yourjourney that brought you to be
the Program Director of theConnecticut chapter of the APDA?
Holly Seymour (02:00):
Well, thank you so much for having me here
today. I'm honored to representthe Connecticut chapter of APDA
as the program director. I havethe honor of supporting the PD
community with support groups,wellness programs, educational
conferences and more. And I takedirect calls with requests for
information referral servicesfor those impacted by
(02:20):
Parkinson's, and kind of how Ifell into this role, or, or it
was kind of a transition. Backin 2017 I was working in the
assisted living world as a salesand marketing director, and I
would help families who wereinterested in moving their loved
one into assisted living. And Imet a husband named Tony, and he
was caring for his wife withParkinson's, and it was just
(02:43):
becoming more than he couldmanage, and listening to him was
my spark to get Parkinson'ssupport group started at the
community where I worked. So Ireached out to the APDA, and I
let them know that I would loveto start a Parkinson support
group in Glastonbury, where Iworked at the time, and I
(03:04):
started it, and I love thesupport APD offered me the
resources that were available tothe people in my support group.
And I had that group inGlastonbury for a few years
before transitioning toFarmington, Connecticut, and I
was able to facilitate a groupthere, and I still facilitate
that support group. Oh, that'sso nice. So I've been a
facilitator Since 2017 and in2021 I reached out to APDA and
(03:30):
said, I'd really be interestedin joining the board. I thought
that it would allow me to kindof elevate the level of services
and volunteerism I reallycraved. So I was able to join
the board, and loved the abilityto, you know, work with the my
fellow board members to advanceour mission. And, you know, I
(03:50):
just dove right in. It was, itwas post pandemic world, so it
was a little weird. Everythingwas on Zoom, and then we slowly
transitioned back to having, youknow, in person events with
masks. And, you know, wenavigated all of that. And then
they posted a position forprogram director, and I said,
(04:10):
that is me. That is I want, Ilove helping people. That was
kind of when I was in theassisted living sales and
marketing role, I really enjoyedhelping people that was, that
was the most important thing.
And I kind of would put on, I'mnot a social worker, but I put
on the social worker hat, or Iput on my nurse hat, and I would
try to guide people and givethem resources. So I felt like
(04:30):
this was just right up my alley.
So I made that transition twoyears ago, and I'm really proud
of the progress that I have beenable to support in advancing the
services we're able to provideConnecticut residents. What is
Parkinson's disease? It's amovement disorder. It affects,
(04:50):
you know, the ability for peopleto perform common daily
activities. It's a chronic andprogressive disease, so it gets
worse over time and. It'scharacterized by common motor
symptoms such as tremor,stiffness or rigidity in the
muscles, slowness of movement,and it also gives issues with
(05:12):
balance and posture. So thoseare the main hallmark symptoms
of Parkinson's. But then there'sthis. We call it kind of the
iceberg. Everything underneaththe water is all the things you
don't see. So it's the non motorsymptoms which can be issues
with depression, fatigue, sleepproblems, you know, constipation
(05:32):
and orthostatic hypotension, allthese different things that you
can't see on the surface. And Ilike to clear up. Many people
just assume tremor equalsParkinson's. But there are some
differentiators, and there arepeople without tremors that have
Parkinson's. So it's, it's, it'sa snowflake disease. You know,
everybody that you meet withParkinson's, you know, they're,
(05:54):
they have a different journey,they have a different set of
symptoms, different progression.
So it's, it's kind of a trickydisease to treat, and I think
that's why our support groupsand our educational programs are
so important. It's not astandardized progression or
anything like that. So peopleneed a lot of support.
Nancy Barrow (06:12):
And are men more prone to it?
Holly Seymour (06:14):
Yeah, so there are, there's about a one and a
half times more likely to menare more likely to have
Parkinson's, and I think thiscan be for multiple reasons.
There's, you know, environmentalimpacts that are related to
Parkinson's. So veterans whoserved in Vietnam War who were
exposed to Agent Orange, thosetend to be men, so they're going
(06:36):
to have be that they're going toskew the rate of incidents. And
then also just workplaceexposures can also increase the
incidents, but we are seeingquite a few women in our support
groups, and they're there andyeah, and they need a different,
different level of support, Ithink, because, because they're
(06:56):
women, and where they're thecaregivers, usually, so it's a
different, different role.
Nancy Barrow (07:00):
Are there medications or treatments? What
can you do for someone who hasParkinson's?
Holly Seymour (07:05):
So with Parkinson's, thereare over 30
medications currently prescribedfor for Parkinson's, and they
they manage the symptoms, theydo not slow progression, and
they cannot reverse any of thedisease progression thus far. So
they're an important component.
But I do always recommend peopleto participate in physical
therapy and occupational therapyand speech therapy and to be
(07:28):
avid exercisers. Exercise is thebest thing for Parkinson's. It's
neuroprotective. It can reallymake a huge impact on their
disease progression and slowingand flatlining it, and kind of
you want to plateau andprogression, that's a good
thing. So it's very importantthat we we preach that every
chance we get to let people knowthat just in the way that they
(07:51):
take their their medication inthe morning, they need to play
in how they're going to exercisethat day. It can be difficult
for, you know, whatever symptomsare bothering them. But we
really try to encourage anyexercise in any form, whether it
be just walking back and forthto the mailbox, whatever you can
do is really important.
Nancy Barrow (08:12):
A body in motion stays in motion, right?
Holly Seymour (08:14):
That's it. Don't move it don't use it, you lose
it. For your body and yourbrain. You make that
recommendation regularly. Wehave a wonderful network of
movement disorder specialistshere in Connecticut, from
doctors with with Yale, UConn,Hartford Healthcare,Hospital for
Special Care, those centers havemovement disorder specialists,
(08:37):
which are neurologists who tookan extra two years to become
experts on movement disorders,mainly Parkinson's. For movement
disorder specialists, they say80% of their patients have
Parkinson's. So the othermovement disorders that exist
make up the other 20% of theirpractice. So they're experts.
They see it all day. So we dotry to recommend that people
(09:00):
with Parkinson's get in to havea movement disorder specialist,
neurologist as their careprovider. That's not always
possible, just because, youknow, Doctor shortages and
things like that, but you wantto be with a neurologist who is
comfortable in making, you knowthe right recommendations for
your Parkinson's care, because,as I mentioned earlier, it's a
(09:22):
really challenging disease totreat because everybody's so
different. So you want somebodywho understands the nuance of
Parkinson's, and it's not just,oh, here's this pill by seed in
six months or see a year. Sothat's one thing we recommend,
and APD does have kind of thoserecommendations and awareness of
(09:42):
all the doctors who are expertsin the field. And then beyond
Connecticut, we look at thedifferent, you know, movement
disorder, societies and thingslike that, to recommend. I
sometimes get calls of, youknow, a sister or cousin that
lives here in Connecticut andreached out to Connecticut a
PDA, but there. Our loved onelives in Pennsylvania, so I'll
(10:03):
make a record. I'll look up someresources. So we, we try to be
of service to anybody who givesus a call. Plus AP DA national
has a hotline, a helpline, thatcan help people. So, you know,
we have this network across thecountry that can can get people
the information they need.
Nancy Barrow (10:21):
What about research and clinical trials? Do
you have a lot of those?
Holly Seymour (10:26):
Yeah, so APDA, you know, we're a grassroots
organization, community focused,but you know, we have invested
65 million in research since ourinception, and we fund nine
centers of advanced research,one of which is here in
Connecticut. So at the YaleSchool of Medicine, our funding
supports discovery of genetictargets for precision medicine,
(10:50):
drug development using big dataand stem cell avatars, stuff way
above my my pay grade. Butreally, really cool things are
happening.
Nancy Barrow (10:59):
Everything with stem cell to me, is, like,
really interesting, you know,yeah,
Holly Seymour (11:03):
And biomarker discovery, so, you know, I think
there's this research that we'rehelping fund is hopefully going
to bring, you know, get thecause of Parkinson's, you know,
their their ideas, but we haveto get to the root cause before
we can get The cure. So we'reworking with some of the
smartest people in the world tohelp fund their research. And I
(11:28):
actually just yesterday, had theopportunity to visit the Yale
School of Medicine ResearchCenter and listen to some of the
the scientists behind it. Andit's incredible and really
exciting to see what's what'shappening at the forefront of
cutting edge research.
Nancy Barrow (11:46):
So Heather, can you tell me the story of your
dad and his diagnosis withParkinson's and your involvement
in that journey?
Heather Pierce (11:55):
Sure absolutely.
So my dad grew up in WesternMassachusetts, and he raised my
sister and I with my mom inVermont, and he was a hard
worker. He worked six to sevendays a week. He was always
passionate about things that hedid. So if he wanted to build
houses, he would build threehouses, because he wanted to.
That was his passion. He had hisown lawn care business. He was a
(12:18):
pretty famous bartender up atKillington at the ski resort.
Oh, no, I probably know himwell. Based mash was his famous
drink that he brought up, Ithink it was in like the
Bahamas. It was a drink, andthen he brought it to
Killington. So he was social.
Loved being around people. Whenhe'd come and visit me in
(12:39):
Connecticut, he would hang outat the senior living communities
that I would work at, and hangout with the residents, and
they'd ask him, When are youmoving in Bernie? And he just
loved it. He loved the concept.
And so we always kind of hadthis plan that if he ever needed
Senior Living, he would come,you know, come back to me, and I
would help him. So he retired atthe age of 75 he had a condo in
(13:00):
Florida, and my sister and herchildren are down there, so he
decided to permanently retireand spend his full time there.
Shortly after going there, hereally didn't like the hot
weather. He wasn't really intothe the heat. Then he had a fall
with his with his bike, and henoticed he had some problems
with his shoulder was gettingstiff, and he did physical
(13:23):
therapy, and I would go down andvisit him, and I noticed that he
was shuffling as he was walking.
And I would go with him todoctor's appointments and
recommend, can we get him into aneurologist? Things in Florida
just happened a little bitslower. And then one day, I got
a phone call from him, and hesaid, I sold my condo. I'm
(13:46):
coming up to Connecticut. I'mgoing to live with you, and
you're going to help me withsenior living. And I said, oh
boy. So I said, okay, so he cameup, and I was working in
Farmington with Holly, and I hadHolly meet him, and he did not
have a diagnosis at the time. Ithink he had some denial about
it, you know, he just didn'tshare some other symptoms he was
having. And I said, Holly, whatdo you think about this? And I
(14:10):
had an idea, but I needed Hollyjust to kind of look and she
goes, I don't know, but I reallythink it might be Parkinson's.
So we saw a movement specialdisorder, and we went through
the DAT scan, which did showthat he had Parkinson's.
Nancy Barrow (14:25):
is that the only way you can tell you have, you
know, is it hard to diagnose?
Heather Pierce (14:31):
There's a couple new tests. I know Holly, there's
the the skin graft, one thatthey now do. Do you know much
about that?
Holly Seymour (14:37):
So the main way Parkinson's is diagnosed is
through a clinical assessmentfrom a neurologist or a doctor.
So they're going to look at howyou move your hands. They're
going to watch you walk to seeif you have a shuffling gait,
you know, not swinging both armswhen you walk, if you keep one
kind of still at your side andthe other swings. That may be a
(14:58):
sign of Parkinson's. So they'relooking at several of these
things when they do a clinicalassessment. So that was the main
way that Parkinson's wasdiagnosed. And then 2030, years
ago, I don't have that data infront of me, dat scan was
developed, and that's where theydo kind of like an MRI of the
brain, and they're looking atthe dopamine producing center of
(15:21):
the brain and to see if itlights up in a certain way. You
know, you have enough of thedopamine producing cells if it's
diminished in any way that wouldbe indicative of Parkinson's.
And they're also doing thosetypes of scans to rule out other
things that could be causingsome other symptoms. So
sometimes they're trying to, youknow, cross other things off the
list, first, making sure youknow you don't have a you didn't
(15:45):
have a stroke or a tumor orsomething like that that could
be causing those symptoms.
First. And then recently, theydeveloped a skin graft test that
is looking for alpha synucleinin the skin cells, which is a
biomarker for Parkinson's. Sothat's they take, take some skin
(16:05):
cells. I know one of themhappens to be on your hand, and
it can be very helpful inconfirming a diagnosis. And a
lot of times, they'll do aclinical assessment first, and
if they're you don't always haveto get a dad skin or the skin
graft test.
Heather Pierce (16:23):
He did not have the normal symptoms. So he did
not have tremors. He didn'treally what he definitely was
unique with his symptoms.
Nancy Barrow (16:33):
And do like, when you say the dopamine factor of
it, right? Like, is that wherethe depression can come in
because you're not releasingenough dopamine. So that's like,
where you can really bedepressed, is that, yeah, you
said that was one of thesymptoms.
Holly Seymour (16:46):
Yeah depression is definitely a tough symptom.
So the by the time most peopleare diagnosed with Parkinson's,
they've lost 70 to 80% of theirdopamine producing cells. So it
can be a huge change, and thatdopamine kind of helps with
movement. It helps make itsmooth steps to go one in front
(17:06):
of the other. You know, it makesyou more graceful. Versus
without that dopamine, yourmovements are more clunky. They
take more time. And then, youknow that the the drive the
happiness, you know the get upand go, you just don't have
that.
Nancy Barrow (17:24):
Did you see that with your your dad Heather?
Heather Pierce (17:27):
Yeah. I mean, he, he was not sleeping well at
night, so he was really tiredduring the day. He always had a
really great smile on his face.
So he was really hard to see,some depression, maybe later on,
down, down his journey, but hewas definitely tired through the
day. I mean, it was exhaustingfor him,
Holly Seymour (17:48):
and sleep issues are common in Parkinson's as
well.
Nancy Barrow (17:51):
And how was that for you, Heather, you know,
helping him with this. And whatwas the process? Was it like a
six month, like, was he therefor very long before the
diagnosis came.
Heather Pierce (18:02):
So, I mean, I definitely think he had it for a
couple years before, and I justthink that he wasn't very open
about some of the things that hewas experiencing. But it was
hard because it was right beforeCOVID, and it was hard for him
to do the exercises, even thoughhe knew it was good for him, it
was just really he wasexhausted. So then we went
(18:23):
through the lockdown, and so asa caregiver, I had to advocate
for his care, and I had toadvocate for his support. You
know, we don't have I have myimmediate family, my husband and
my children here, but not, youknow, his family's in
Massachusetts, and we had familyin Florida, so it was really
solely on me to really helpadvocate So,
Nancy Barrow (18:45):
But Heather, that must have been super hard for
you knowing what might be comingfor your your dad.
Heather Pierce (18:54):
Definitely, yeah, it was, it was super hard
because it it was very quick,and I thought we would have had
more time with him, but it wasdefinitely very hard.
Nancy Barrow (19:02):
So did it progress faster than a normal case? Well,
I guess there's no normal case,right? Because you said there's
like snowflakes, yeah, they'reall different.
Heather Pierce (19:12):
He did have a fall, and the fall really, you
know, progressed things for him.
So unfortunately, that thatthat, did you know change things
for him when he had that fall.
Nancy Barrow (19:26):
And how did you take care of yourself, knowing
that you know you do all thisfor a living, right? Like you,
you know what is happening, butlike, how did you how did you
give back to yourself? Did youdo that? Did you give yourself
time? Because you did have thetools. But sometimes it's hard
to.
Heather Pierce (19:44):
it's hard because, you know, I think I had
Holly and she like, I mean,every day I had her, and I had
my husband and my family, and Ikept going. I think that's what
got me. Up every day is thatsupport, that immediate support.
But I, you know, turn totherapy. I was doing it
(20:08):
virtually so I'd be in the carbefore work, lunch break after
work, really just helping withcoping strategies and really
helping with trying to be kinderto myself, because I would
always beat myself up over whatjust happened, or I shouldn't
have went away for a coupledays, or this wouldn't have
happened. Those types of things.
I could still see my dad's facewhen I'd walk in the room, and
(20:31):
it would be four in the morningand I'd be there, and he'd be
like, Heather, you're here. Andjust knowing that he was never
alone, or he was never like Ididn't let him down, because it
went from him being my rock tonow I had to be his rock, and I
never wanted to show weakness orsadness around him. So we
laughed a lot, we made a lot ofjokes, because that was how we
(20:54):
coped, like growing up, andthat's how he did so everything,
even to end of life, having thathospice team supported him,
supported me, and it's itcontinued for 13 months after he
passed, and I still have some ofthe things in my office, just as
little signs and, you know,quotes and things to remind
(21:16):
myself that It's okay.
Nancy Barrow (21:20):
Connecticut Paid Leave does cover mental health
and behavioral health like so ifyour doctor says, Hey, listen,
you know you're suffering fromdepression, anxiety, those are
serious health conditions andcan be really life altering,
right? It can be overwhelming.
And when you're a caregiver to aloved one, especially. So how
important is the mental healthwhen you get a diagnosis and
beyond for family members andhow, how important are the
(21:43):
services that Connecticut PaidLeave can do for family members
and for someone who justrecently got a diagnosis and
needs to take some time off andtalk to doctors and go get their
own therapy?
Holly Seymour (21:58):
Yeah, I think mental health needs to be a an
important pillar in the supportthat somebody has. So whether
you know exercise is reallyimportant, mental health, social
support systems, having a reallysolid healthcare team, and you
know that family support isreally crucial when when you're
(22:19):
challenged with Parkinson's andother chronic diseases. So you
have to look at how you can makesure your your cup stays at the
right level. I don't know if ithas to be full, but you want it
to be at least, at least havesomething in the cup, right? And
you know, whether it be talkingto your doctor about the burnout
or the caregiver stress thatyou're dealing with, or
(22:41):
personally, if you're diagnosed,you know, dealing with the
changes, if you need to makeworkplace accommodations, if you
need to, you know, spend sometime away from work to focus on
what your plan is going to benext. I think it's important to
talk to your doctor about thatso that you can get the
(23:01):
services. And we're so luckyhere in Connecticut to have the
paid leave program. It's, it's alifeline for so many families,
and we're just excited to help,you know, spread that to the
Parkinson's community that, youknow, this chronic disease is a
lot to take on and and if youneed to take time away from work
(23:22):
in order to do so, it's here forthat.
Nancy Barrow (23:25):
Yeah the chronic conditions, like Parkinson's,
like, you can take it everyyear, right? So it's 12 weeks in
a year. You can take it all atonce if you need to, if it's,
you know, it's been a veryoverwhelming time, or you're
hospitalized, or whateverhappens. Or you can break it up.
You can do it intermittently.
You can do a couple weeks here.
You can do a couple of weeksthere. Reduce schedule from work
(23:47):
if you know you're going to betaking afternoons off, you know.
So there's real flexibility withthe with the program, but it is
such a wonderful program for thecaregivers too, you know, so
they can take time away fromwork and not worry about paying
the bills and and staying withtheir loved ones so they can,
they can do that, which I love.
This program I do. We're we arereally lucky in Connecticut to
(24:09):
have it. My I
Holly Seymour (24:12):
I have members of my support group who have had
deep brain stimulation, which isa surgery to help manage the
symptoms of Parkinson's, andit's a pretty intense it's brain
surgery, so the recovery afterit can can take several months.
So for example, if they're stillin their working years, in their
40s, 50s or 60s, they can takethe 12 weeks and recover after
(24:37):
having that surgery. Sosomething like that is really
crucial. And it's great to knowthat. You know, if they use
those 12 weeks up this year, andif next year something happens,
it's not, they have it availableagain, that's really great.
Nancy Barrow (24:51):
Yeah I really love that about it. What did you
learn about yourself Heather, Togo through this process with
your father.
Heather Pierce (25:03):
I learned that I'm stronger than I thought I
was. I really am, and I I justlearned that I just can really
go through any tough times, youknow, and reach out to those
people that were there for me.
Because, I mean, I would havebeen really lost without the
(25:26):
support, but I'm a lot strongerYeah!.
Nancy Barrow (25:31):
And, and your, your trajectory of life has sort
of changed too after that,right?
Heather Pierce (25:36):
Yeah, it really did in her own business, yeah, I
know,
Nancy Barrow (25:39):
right, like, so your trajectory changed because
of your dad. What a beautifulgift that was, honestly, you
know what I mean?
Heather Pierce (25:46):
Yeah after 20 years, I left corporate and
started ClearView Senior LivingAdvisor, and I wanted to help
support the families and theseniors that are out there,
helping them navigate whatthey're going through, and maybe
it's staying home, or maybe it'ssenior living, but really, not
all communities can supportsomeone to age in place. So
(26:08):
really help them find the givethem some options that could
really be a great fit for themand the resources that are out
there. A lot of times I talk tofamilies, even in the support
groups setting, where they arelike, I'm at a dead end. I don't
know where else I can go. And Ialso have a podcast that we talk
with resources that come on, andthere are a lot of free
(26:30):
resources here in Connecticutthat can help you. They come to
the home. There's wonderfulveteran services. There's just
so much, and it's hard when yougo on the internet and you
Google, because you can get lostin that, search, you can. So if
I can help people feel lessoverwhelmed and really just be
supportive, that's a win.
Nancy Barrow (26:52):
Yeah. And what advice would you give someone
who may be in a caregiving spacethat you were in for a family
member who was just diagnosedwith Parkinson's. What advice
would you give someone Heather?
Heather Pierce (27:05):
I would say, let them lead, and don't push them
when they say, No, I thinkoffering support without being
pushy or overwhelming, even ifyou believe you know what's best
for them, it's really best tolet them let them lead. This is
their journey, and we're thereto support them.
Holly Seymour (27:24):
Yeah, you know there, there's about 12,000
people living in Connecticutwith Parkinson's, and the more
we can do to reach out andsupport those, the better a well
educated community, I think, cancan take their journey into
their own hands, and we want tobe that support system for them.
We're happy to be at the table.
Heather Pierce (27:45):
They also think that, you know, you're not alone
on this journey. And there'swonderful as we mentioned,
movement disorder programsthroughout Connecticut. There's
so much support through howmany, 36 different support
groups here in Connecticut, theprograms that APDA offers and
(28:08):
the resources to really helppeople feel connected and
supportive. You're not alone.
And I think if we can get theword out for April and touch
some more people, it's great.
Holly Seymour (28:20):
All our events are free. We want to make sure
they're accessible to everybody.
So we bring bring together youknow, our community events, like
our optimism walks, which arefundraising in nature, but still
just a great community event,our education conferences that
we do each year, ask the doctorprograms, art programs, wellness
programs. Our goal is to makemake life better for people with
(28:43):
Parkinson's and and we do thatwith offering these types of
programs.
Nancy Barrow (28:48):
I want to thank my guests, Holly Seymour from the
Connecticut Chapter of theAmerican Parkinson's Disease
Association, and Heather Pierce,who owns a company called
ClearView Senior LivingAdvisors. And thank you for
sharing your personal storyabout your dad and letting me
get to kind of know what kind ofperson he was, I think that's
important to continue keepinghim alive and in the memories
that you have of him. And I justwanted to thank you for sharing
(29:11):
and being so personal about it.
Heather Pierce (29:13):
Thank you so much.
Holly Seymour (29:14):
Thank you, Nancy,
Nancy Barrow (29:15):
For more information or to apply for
benefits. Please go toctpaidleave.org This has been
another edition of The PaidLeave Podcast. Please like and
subscribe so you'll be notifiedabout new podcasts that become
available Connecticut Paid Leaveis a public act with a personal
purpose. I'm Nancy Barrow, andthanks for listening.
Hello Connecticut, and welcome to The Paid Leave
Podcast. The title basicallysays it all. I'm Nancy Barrow,
and I will be delving into thisnew state program and how it can
help you and your family. Thispodcast will give you
information you should knowabout Connecticut Paid Leave and
maybe just a little bit more.
Connecticut Paid Leave bringspeace of mind to your home,
(00:22):
family and workplace. Welcome toThe Paid Leave Podcast.
Parkinson's Awareness Month isobserved in April, and is an
opportunity to increaseawareness about the ailment and
its symptoms, as well as tosupport victims national.
Parkinson's day is observed onapril 11 every year to raise
(00:43):
awareness about this medicalcondition and its severity.
Muhammad Ali and Michael J Foxare the most well known people
to suffer from Parkinson'sdisease. And joining in on this
conversation about Parkinson'sdisease is Holly Seymour, the
Program Director for theConnecticut Chapter of the
American Parkinson's DiseaseAssociation, also known as
APDA. And Heather Pierce joinsus as a caregiver. She supported
(01:08):
her dad after his diagnosis ofParkinson's in 2019 and was his
caregiver and advocate before hepassed in 2021 she's now a board
member for APDA and leads asupport group where she helps
those with PD and their carepartners navigate the changes of
life with PD. And she also ownsa company called ClearView
(01:29):
Senior Living advisors. Shehelps families connect to
resources, and she's soonstarting school in Vermont to be
an end of life doula to furtherthe support she can offer
families. She's also a communityeducator for the Alzheimer's
Association. So welcome to ThePaid Leave Podcast. Holly and
Heather. I'm so sorry aboutYourDad.
Heather Pierce (01:50):
. Thank you for having us.
Holly Seymour (01:51):
Thank you Nancy.
Nancy Barrow (01:52):
Holly can you give me maybe just a little bit of
background? What was yourjourney that brought you to be
the Program Director of theConnecticut chapter of the APDA?
Holly Seymour (02:00):
Well, thank you so much for having me here
today. I'm honored to representthe Connecticut chapter of APDA
as the program director. I havethe honor of supporting the PD
community with support groups,wellness programs, educational
conferences and more. And I takedirect calls with requests for
information referral servicesfor those impacted by
(02:20):
Parkinson's, and kind of how Ifell into this role, or, or it
was kind of a transition. Backin 2017 I was working in the
assisted living world as a salesand marketing director, and I
would help families who wereinterested in moving their loved
one into assisted living. And Imet a husband named Tony, and he
was caring for his wife withParkinson's, and it was just
(02:43):
becoming more than he couldmanage, and listening to him was
my spark to get Parkinson'ssupport group started at the
community where I worked. So Ireached out to the APDA, and I
let them know that I would loveto start a Parkinson support
group in Glastonbury, where Iworked at the time, and I
(03:04):
started it, and I love thesupport APD offered me the
resources that were available tothe people in my support group.
And I had that group inGlastonbury for a few years
before transitioning toFarmington, Connecticut, and I
was able to facilitate a groupthere, and I still facilitate
that support group. Oh, that'sso nice. So I've been a
facilitator Since 2017 and in2021 I reached out to APDA and
(03:30):
said, I'd really be interestedin joining the board. I thought
that it would allow me to kindof elevate the level of services
and volunteerism I reallycraved. So I was able to join
the board, and loved the abilityto, you know, work with the my
fellow board members to advanceour mission. And, you know, I
(03:50):
just dove right in. It was, itwas post pandemic world, so it
was a little weird. Everythingwas on Zoom, and then we slowly
transitioned back to having, youknow, in person events with
masks. And, you know, wenavigated all of that. And then
they posted a position forprogram director, and I said,
(04:10):
that is me. That is I want, Ilove helping people. That was
kind of when I was in theassisted living sales and
marketing role, I really enjoyedhelping people that was, that
was the most important thing.
And I kind of would put on, I'mnot a social worker, but I put
on the social worker hat, or Iput on my nurse hat, and I would
try to guide people and givethem resources. So I felt like
(04:30):
this was just right up my alley.
So I made that transition twoyears ago, and I'm really proud
of the progress that I have beenable to support in advancing the
services we're able to provideConnecticut residents. What is
Parkinson's disease? It's amovement disorder. It affects,
(04:50):
you know, the ability for peopleto perform common daily
activities. It's a chronic andprogressive disease, so it gets
worse over time and. It'scharacterized by common motor
symptoms such as tremor,stiffness or rigidity in the
muscles, slowness of movement,and it also gives issues with
(05:12):
balance and posture. So thoseare the main hallmark symptoms
of Parkinson's. But then there'sthis. We call it kind of the
iceberg. Everything underneaththe water is all the things you
don't see. So it's the non motorsymptoms which can be issues
with depression, fatigue, sleepproblems, you know, constipation
(05:32):
and orthostatic hypotension, allthese different things that you
can't see on the surface. And Ilike to clear up. Many people
just assume tremor equalsParkinson's. But there are some
differentiators, and there arepeople without tremors that have
Parkinson's. So it's, it's, it'sa snowflake disease. You know,
everybody that you meet withParkinson's, you know, they're,
(05:54):
they have a different journey,they have a different set of
symptoms, different progression.
So it's, it's kind of a trickydisease to treat, and I think
that's why our support groupsand our educational programs are
so important. It's not astandardized progression or
anything like that. So peopleneed a lot of support.
Nancy Barrow (06:12):
And are men more prone to it?
Holly Seymour (06:14):
Yeah, so there are, there's about a one and a
half times more likely to menare more likely to have
Parkinson's, and I think thiscan be for multiple reasons.
There's, you know, environmentalimpacts that are related to
Parkinson's. So veterans whoserved in Vietnam War who were
exposed to Agent Orange, thosetend to be men, so they're going
(06:36):
to have be that they're going toskew the rate of incidents. And
then also just workplaceexposures can also increase the
incidents, but we are seeingquite a few women in our support
groups, and they're there andyeah, and they need a different,
different level of support, Ithink, because, because they're
(06:56):
women, and where they're thecaregivers, usually, so it's a
different, different role.
Nancy Barrow (07:00):
Are there medications or treatments? What
can you do for someone who hasParkinson's?
Holly Seymour (07:05):
So with Parkinson's, thereare over 30
medications currently prescribedfor for Parkinson's, and they
they manage the symptoms, theydo not slow progression, and
they cannot reverse any of thedisease progression thus far. So
they're an important component.
But I do always recommend peopleto participate in physical
therapy and occupational therapyand speech therapy and to be
(07:28):
avid exercisers. Exercise is thebest thing for Parkinson's. It's
neuroprotective. It can reallymake a huge impact on their
disease progression and slowingand flatlining it, and kind of
you want to plateau andprogression, that's a good
thing. So it's very importantthat we we preach that every
chance we get to let people knowthat just in the way that they
(07:51):
take their their medication inthe morning, they need to play
in how they're going to exercisethat day. It can be difficult
for, you know, whatever symptomsare bothering them. But we
really try to encourage anyexercise in any form, whether it
be just walking back and forthto the mailbox, whatever you can
do is really important.
Nancy Barrow (08:12):
A body in motion stays in motion, right?
Holly Seymour (08:14):
That's it. Don't move it don't use it, you lose
it. For your body and yourbrain. You make that
recommendation regularly. Wehave a wonderful network of
movement disorder specialistshere in Connecticut, from
doctors with with Yale, UConn,Hartford Healthcare,Hospital for
Special Care, those centers havemovement disorder specialists,
(08:37):
which are neurologists who tookan extra two years to become
experts on movement disorders,mainly Parkinson's. For movement
disorder specialists, they say80% of their patients have
Parkinson's. So the othermovement disorders that exist
make up the other 20% of theirpractice. So they're experts.
They see it all day. So we dotry to recommend that people
(09:00):
with Parkinson's get in to havea movement disorder specialist,
neurologist as their careprovider. That's not always
possible, just because, youknow, Doctor shortages and
things like that, but you wantto be with a neurologist who is
comfortable in making, you knowthe right recommendations for
your Parkinson's care, because,as I mentioned earlier, it's a
(09:22):
really challenging disease totreat because everybody's so
different. So you want somebodywho understands the nuance of
Parkinson's, and it's not just,oh, here's this pill by seed in
six months or see a year. Sothat's one thing we recommend,
and APD does have kind of thoserecommendations and awareness of
(09:42):
all the doctors who are expertsin the field. And then beyond
Connecticut, we look at thedifferent, you know, movement
disorder, societies and thingslike that, to recommend. I
sometimes get calls of, youknow, a sister or cousin that
lives here in Connecticut andreached out to Connecticut a
PDA, but there. Our loved onelives in Pennsylvania, so I'll
(10:03):
make a record. I'll look up someresources. So we, we try to be
of service to anybody who givesus a call. Plus AP DA national
has a hotline, a helpline, thatcan help people. So, you know,
we have this network across thecountry that can can get people
the information they need.
Nancy Barrow (10:21):
What about research and clinical trials? Do
you have a lot of those?
Holly Seymour (10:26):
Yeah, so APDA, you know, we're a grassroots
organization, community focused,but you know, we have invested
65 million in research since ourinception, and we fund nine
centers of advanced research,one of which is here in
Connecticut. So at the YaleSchool of Medicine, our funding
supports discovery of genetictargets for precision medicine,
(10:50):
drug development using big dataand stem cell avatars, stuff way
above my my pay grade. Butreally, really cool things are
happening.
Nancy Barrow (10:59):
Everything with stem cell to me, is, like,
really interesting, you know,yeah,
Holly Seymour (11:03):
And biomarker discovery, so, you know, I think
there's this research that we'rehelping fund is hopefully going
to bring, you know, get thecause of Parkinson's, you know,
their their ideas, but we haveto get to the root cause before
we can get The cure. So we'reworking with some of the
smartest people in the world tohelp fund their research. And I
(11:28):
actually just yesterday, had theopportunity to visit the Yale
School of Medicine ResearchCenter and listen to some of the
the scientists behind it. Andit's incredible and really
exciting to see what's what'shappening at the forefront of
cutting edge research.
Nancy Barrow (11:46):
So Heather, can you tell me the story of your
dad and his diagnosis withParkinson's and your involvement
in that journey?
Heather Pierce (11:55):
Sure absolutely.
So my dad grew up in WesternMassachusetts, and he raised my
sister and I with my mom inVermont, and he was a hard
worker. He worked six to sevendays a week. He was always
passionate about things that hedid. So if he wanted to build
houses, he would build threehouses, because he wanted to.
That was his passion. He had hisown lawn care business. He was a
(12:18):
pretty famous bartender up atKillington at the ski resort.
Oh, no, I probably know himwell. Based mash was his famous
drink that he brought up, Ithink it was in like the
Bahamas. It was a drink, andthen he brought it to
Killington. So he was social.
Loved being around people. Whenhe'd come and visit me in
(12:39):
Connecticut, he would hang outat the senior living communities
that I would work at, and hangout with the residents, and
they'd ask him, When are youmoving in Bernie? And he just
loved it. He loved the concept.
And so we always kind of hadthis plan that if he ever needed
Senior Living, he would come,you know, come back to me, and I
would help him. So he retired atthe age of 75 he had a condo in
(13:00):
Florida, and my sister and herchildren are down there, so he
decided to permanently retireand spend his full time there.
Shortly after going there, hereally didn't like the hot
weather. He wasn't really intothe the heat. Then he had a fall
with his with his bike, and henoticed he had some problems
with his shoulder was gettingstiff, and he did physical
(13:23):
therapy, and I would go down andvisit him, and I noticed that he
was shuffling as he was walking.
And I would go with him todoctor's appointments and
recommend, can we get him into aneurologist? Things in Florida
just happened a little bitslower. And then one day, I got
a phone call from him, and hesaid, I sold my condo. I'm
(13:46):
coming up to Connecticut. I'mgoing to live with you, and
you're going to help me withsenior living. And I said, oh
boy. So I said, okay, so he cameup, and I was working in
Farmington with Holly, and I hadHolly meet him, and he did not
have a diagnosis at the time. Ithink he had some denial about
it, you know, he just didn'tshare some other symptoms he was
having. And I said, Holly, whatdo you think about this? And I
(14:10):
had an idea, but I needed Hollyjust to kind of look and she
goes, I don't know, but I reallythink it might be Parkinson's.
So we saw a movement specialdisorder, and we went through
the DAT scan, which did showthat he had Parkinson's.
Nancy Barrow (14:25):
is that the only way you can tell you have, you
know, is it hard to diagnose?
Heather Pierce (14:31):
There's a couple new tests. I know Holly, there's
the the skin graft, one thatthey now do. Do you know much
about that?
Holly Seymour (14:37):
So the main way Parkinson's is diagnosed is
through a clinical assessmentfrom a neurologist or a doctor.
So they're going to look at howyou move your hands. They're
going to watch you walk to seeif you have a shuffling gait,
you know, not swinging both armswhen you walk, if you keep one
kind of still at your side andthe other swings. That may be a
(14:58):
sign of Parkinson's. So they'relooking at several of these
things when they do a clinicalassessment. So that was the main
way that Parkinson's wasdiagnosed. And then 2030, years
ago, I don't have that data infront of me, dat scan was
developed, and that's where theydo kind of like an MRI of the
brain, and they're looking atthe dopamine producing center of
(15:21):
the brain and to see if itlights up in a certain way. You
know, you have enough of thedopamine producing cells if it's
diminished in any way that wouldbe indicative of Parkinson's.
And they're also doing thosetypes of scans to rule out other
things that could be causingsome other symptoms. So
sometimes they're trying to, youknow, cross other things off the
list, first, making sure youknow you don't have a you didn't
(15:45):
have a stroke or a tumor orsomething like that that could
be causing those symptoms.
First. And then recently, theydeveloped a skin graft test that
is looking for alpha synucleinin the skin cells, which is a
biomarker for Parkinson's. Sothat's they take, take some skin
(16:05):
cells. I know one of themhappens to be on your hand, and
it can be very helpful inconfirming a diagnosis. And a
lot of times, they'll do aclinical assessment first, and
if they're you don't always haveto get a dad skin or the skin
graft test.
Heather Pierce (16:23):
He did not have the normal symptoms. So he did
not have tremors. He didn'treally what he definitely was
unique with his symptoms.
Nancy Barrow (16:33):
And do like, when you say the dopamine factor of
it, right? Like, is that wherethe depression can come in
because you're not releasingenough dopamine. So that's like,
where you can really bedepressed, is that, yeah, you
said that was one of thesymptoms.
Holly Seymour (16:46):
Yeah depression is definitely a tough symptom.
So the by the time most peopleare diagnosed with Parkinson's,
they've lost 70 to 80% of theirdopamine producing cells. So it
can be a huge change, and thatdopamine kind of helps with
movement. It helps make itsmooth steps to go one in front
(17:06):
of the other. You know, it makesyou more graceful. Versus
without that dopamine, yourmovements are more clunky. They
take more time. And then, youknow that the the drive the
happiness, you know the get upand go, you just don't have
that.
Nancy Barrow (17:24):
Did you see that with your your dad Heather?
Heather Pierce (17:27):
Yeah. I mean, he, he was not sleeping well at
night, so he was really tiredduring the day. He always had a
really great smile on his face.
So he was really hard to see,some depression, maybe later on,
down, down his journey, but hewas definitely tired through the
day. I mean, it was exhaustingfor him,
Holly Seymour (17:48):
and sleep issues are common in Parkinson's as
well.
Nancy Barrow (17:51):
And how was that for you, Heather, you know,
helping him with this. And whatwas the process? Was it like a
six month, like, was he therefor very long before the
diagnosis came.
Heather Pierce (18:02):
So, I mean, I definitely think he had it for a
couple years before, and I justthink that he wasn't very open
about some of the things that hewas experiencing. But it was
hard because it was right beforeCOVID, and it was hard for him
to do the exercises, even thoughhe knew it was good for him, it
was just really he wasexhausted. So then we went
(18:23):
through the lockdown, and so asa caregiver, I had to advocate
for his care, and I had toadvocate for his support. You
know, we don't have I have myimmediate family, my husband and
my children here, but not, youknow, his family's in
Massachusetts, and we had familyin Florida, so it was really
solely on me to really helpadvocate So,
Nancy Barrow (18:45):
But Heather, that must have been super hard for
you knowing what might be comingfor your your dad.
Heather Pierce (18:54):
Definitely, yeah, it was, it was super hard
because it it was very quick,and I thought we would have had
more time with him, but it wasdefinitely very hard.
Nancy Barrow (19:02):
So did it progress faster than a normal case? Well,
I guess there's no normal case,right? Because you said there's
like snowflakes, yeah, they'reall different.
Heather Pierce (19:12):
He did have a fall, and the fall really, you
know, progressed things for him.
So unfortunately, that thatthat, did you know change things
for him when he had that fall.
Nancy Barrow (19:26):
And how did you take care of yourself, knowing
that you know you do all thisfor a living, right? Like you,
you know what is happening, butlike, how did you how did you
give back to yourself? Did youdo that? Did you give yourself
time? Because you did have thetools. But sometimes it's hard
to.
Heather Pierce (19:44):
it's hard because, you know, I think I had
Holly and she like, I mean,every day I had her, and I had
my husband and my family, and Ikept going. I think that's what
got me. Up every day is thatsupport, that immediate support.
But I, you know, turn totherapy. I was doing it
(20:08):
virtually so I'd be in the carbefore work, lunch break after
work, really just helping withcoping strategies and really
helping with trying to be kinderto myself, because I would
always beat myself up over whatjust happened, or I shouldn't
have went away for a coupledays, or this wouldn't have
happened. Those types of things.
I could still see my dad's facewhen I'd walk in the room, and
(20:31):
it would be four in the morningand I'd be there, and he'd be
like, Heather, you're here. Andjust knowing that he was never
alone, or he was never like Ididn't let him down, because it
went from him being my rock tonow I had to be his rock, and I
never wanted to show weakness orsadness around him. So we
laughed a lot, we made a lot ofjokes, because that was how we
(20:54):
coped, like growing up, andthat's how he did so everything,
even to end of life, having thathospice team supported him,
supported me, and it's itcontinued for 13 months after he
passed, and I still have some ofthe things in my office, just as
little signs and, you know,quotes and things to remind
(21:16):
myself that It's okay.
Nancy Barrow (21:20):
Connecticut Paid Leave does cover mental health
and behavioral health like so ifyour doctor says, Hey, listen,
you know you're suffering fromdepression, anxiety, those are
serious health conditions andcan be really life altering,
right? It can be overwhelming.
And when you're a caregiver to aloved one, especially. So how
important is the mental healthwhen you get a diagnosis and
beyond for family members andhow, how important are the
(21:43):
services that Connecticut PaidLeave can do for family members
and for someone who justrecently got a diagnosis and
needs to take some time off andtalk to doctors and go get their
own therapy?
Holly Seymour (21:58):
Yeah, I think mental health needs to be a an
important pillar in the supportthat somebody has. So whether
you know exercise is reallyimportant, mental health, social
support systems, having a reallysolid healthcare team, and you
know that family support isreally crucial when when you're
(22:19):
challenged with Parkinson's andother chronic diseases. So you
have to look at how you can makesure your your cup stays at the
right level. I don't know if ithas to be full, but you want it
to be at least, at least havesomething in the cup, right? And
you know, whether it be talkingto your doctor about the burnout
or the caregiver stress thatyou're dealing with, or
(22:41):
personally, if you're diagnosed,you know, dealing with the
changes, if you need to makeworkplace accommodations, if you
need to, you know, spend sometime away from work to focus on
what your plan is going to benext. I think it's important to
talk to your doctor about thatso that you can get the
(23:01):
services. And we're so luckyhere in Connecticut to have the
paid leave program. It's, it's alifeline for so many families,
and we're just excited to help,you know, spread that to the
Parkinson's community that, youknow, this chronic disease is a
lot to take on and and if youneed to take time away from work
(23:22):
in order to do so, it's here forthat.
Nancy Barrow (23:25):
Yeah the chronic conditions, like Parkinson's,
like, you can take it everyyear, right? So it's 12 weeks in
a year. You can take it all atonce if you need to, if it's,
you know, it's been a veryoverwhelming time, or you're
hospitalized, or whateverhappens. Or you can break it up.
You can do it intermittently.
You can do a couple weeks here.
You can do a couple of weeksthere. Reduce schedule from work
(23:47):
if you know you're going to betaking afternoons off, you know.
So there's real flexibility withthe with the program, but it is
such a wonderful program for thecaregivers too, you know, so
they can take time away fromwork and not worry about paying
the bills and and staying withtheir loved ones so they can,
they can do that, which I love.
This program I do. We're we arereally lucky in Connecticut to
(24:09):
have it. My I
Holly Seymour (24:12):
I have members of my support group who have had
deep brain stimulation, which isa surgery to help manage the
symptoms of Parkinson's, andit's a pretty intense it's brain
surgery, so the recovery afterit can can take several months.
So for example, if they're stillin their working years, in their
40s, 50s or 60s, they can takethe 12 weeks and recover after
(24:37):
having that surgery. Sosomething like that is really
crucial. And it's great to knowthat. You know, if they use
those 12 weeks up this year, andif next year something happens,
it's not, they have it availableagain, that's really great.
Nancy Barrow (24:51):
Yeah I really love that about it. What did you
learn about yourself Heather, Togo through this process with
your father.
Heather Pierce (25:03):
I learned that I'm stronger than I thought I
was. I really am, and I I justlearned that I just can really
go through any tough times, youknow, and reach out to those
people that were there for me.
Because, I mean, I would havebeen really lost without the
(25:26):
support, but I'm a lot strongerYeah!.
Nancy Barrow (25:31):
And, and your, your trajectory of life has sort
of changed too after that,right?
Heather Pierce (25:36):
Yeah, it really did in her own business, yeah, I
know,
Nancy Barrow (25:39):
right, like, so your trajectory changed because
of your dad. What a beautifulgift that was, honestly, you
know what I mean?
Heather Pierce (25:46):
Yeah after 20 years, I left corporate and
started ClearView Senior LivingAdvisor, and I wanted to help
support the families and theseniors that are out there,
helping them navigate whatthey're going through, and maybe
it's staying home, or maybe it'ssenior living, but really, not
all communities can supportsomeone to age in place. So
(26:08):
really help them find the givethem some options that could
really be a great fit for themand the resources that are out
there. A lot of times I talk tofamilies, even in the support
groups setting, where they arelike, I'm at a dead end. I don't
know where else I can go. And Ialso have a podcast that we talk
with resources that come on, andthere are a lot of free
(26:30):
resources here in Connecticutthat can help you. They come to
the home. There's wonderfulveteran services. There's just
so much, and it's hard when yougo on the internet and you
Google, because you can get lostin that, search, you can. So if
I can help people feel lessoverwhelmed and really just be
supportive, that's a win.
Nancy Barrow (26:52):
Yeah. And what advice would you give someone
who may be in a caregiving spacethat you were in for a family
member who was just diagnosedwith Parkinson's. What advice
would you give someone Heather?
Heather Pierce (27:05):
I would say, let them lead, and don't push them
when they say, No, I thinkoffering support without being
pushy or overwhelming, even ifyou believe you know what's best
for them, it's really best tolet them let them lead. This is
their journey, and we're thereto support them.
Holly Seymour (27:24):
Yeah, you know there, there's about 12,000
people living in Connecticutwith Parkinson's, and the more
we can do to reach out andsupport those, the better a well
educated community, I think, cancan take their journey into
their own hands, and we want tobe that support system for them.
We're happy to be at the table.
Heather Pierce (27:45):
They also think that, you know, you're not alone
on this journey. And there'swonderful as we mentioned,
movement disorder programsthroughout Connecticut. There's
so much support through howmany, 36 different support
groups here in Connecticut, theprograms that APDA offers and
(28:08):
the resources to really helppeople feel connected and
supportive. You're not alone.
And I think if we can get theword out for April and touch
some more people, it's great.
Holly Seymour (28:20):
All our events are free. We want to make sure
they're accessible to everybody.
So we bring bring together youknow, our community events, like
our optimism walks, which arefundraising in nature, but still
just a great community event,our education conferences that
we do each year, ask the doctorprograms, art programs, wellness
programs. Our goal is to makemake life better for people with
(28:43):
Parkinson's and and we do thatwith offering these types of
programs.
Nancy Barrow (28:48):
I want to thank my guests, Holly Seymour from the
Connecticut Chapter of theAmerican Parkinson's Disease
Association, and Heather Pierce,who owns a company called
ClearView Senior LivingAdvisors. And thank you for
sharing your personal storyabout your dad and letting me
get to kind of know what kind ofperson he was, I think that's
important to continue keepinghim alive and in the memories
that you have of him. And I justwanted to thank you for sharing
(29:11):
and being so personal about it.
Heather Pierce (29:13):
Thank you so much.
Holly Seymour (29:14):
Thank you, Nancy,
Nancy Barrow (29:15):
For more information or to apply for
benefits. Please go toctpaidleave.org This has been
another edition of The PaidLeave Podcast. Please like and
subscribe so you'll be notifiedabout new podcasts that become
available Connecticut Paid Leaveis a public act with a personal
purpose. I'm Nancy Barrow, andthanks for listening.
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