July 7, 2025 • 30 mins
When 12-year-old Evie chose to make Parkinson's disease awareness part of her Bat Mitzvah project, she opened a window into how this condition affects not just patients, but entire families across generations. Her grandfather's diagnosis four years ago became a pivotal moment for their family, but not in the way you might expect.
What emerges in this candid conversation is a refreshing perspective on family communication during health challenges. While many families shield children from difficult medical realities, Evie's family took a different approach. They shared the diagnosis immediately, creating space for questions, conversations, and ultimately, a stronger bond between Evie and her grandfather. "I feel like I can talk to him about it more than I could when I was younger," she explains, demonstrating how transparency has allowed their relationship to deepen rather than become strained.
The wisdom Evie shares belies her young age, particularly when she describes her philosophy on chronic illness: "Diseases are sometimes like roller coasters. You sometimes will go up and be happy, but you don't know when it can go down." This insightful metaphor captures the unpredictable nature of Parkinson's while maintaining space for joy and connection. Her mother Leslie complements this perspective by highlighting how her father's proactive approach to managing his symptoms through specialized exercise, his positive outlook, and his willingness to maintain normal family activities like travel has created a template for resilience.
For families navigating similar terrain, this episode offers both practical insights and emotional reassurance. The conversation touches on finding community support, maintaining normality amid health challenges, and the power of intergenerational communication. Most importantly, it demonstrates that a diagnosis doesn't have to define a person or their relationships. As Evie simply yet powerfully states, "Parkinson's is a disease, but it also shouldn't define somebody." Listen, share, and join our community of supporters by subscribing and following our work at PCLA.
- Co-hosts: Judy Yaras & Travis Robinson
- Editor & Audio Engineer: (EP1-100) Spencer Yaras
- Audio Engineering Intern: Ana MacAller
- Social Media Intern: Ana MacAller
www.INDYpodcast.net
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Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Speaker 1 (00:01):
Welcome to I'm Not Dead Yet, with Judy and Travis,
a podcast about living anextraordinary life with
extraordinary circumstances.
Speaker 2 (00:17):
Welcome to the I'm Not Dead Yet podcast.
I'm your co-host, TravisRobinson.
I was diagnosed withParkinson's disease at age 35 in
(00:38):
2014.
Speaker 3 (00:43):
And I'm your other co-host, judy Yarris.
My husband Sandy hadParkinson's disease for 18 years
.
Speaker 2 (00:50):
I was his care partner Today's episode we have
the privilege of talking to twoladies who are intimately
familiar with Parkinson's, asthey are the daughter and
(01:13):
granddaughter of a BD patient.
Speaker 3 (01:20):
That's right, travis.
We're very fortunate.
Today we're doing something alittle bit different.
Today we're speaking withLeslie Grosvenor and her
daughter, evie, and today'sinterview welcome Evie and
Leslie.
And today's interview is alittle bit different because
Evie is actually our main personthat we are going to be talking
(01:42):
with today, and I just want tosay that Evie is 13 and getting
ready to do her bat mitzvah, andso this podcast is going to be
part of her mitzvah project forher bat mitzvah, and we may have
some listeners that don't knowany of this or what it means, so
(02:03):
maybe one of you could describethis to us and kind of let our
listeners know, describe what abat mitzvah is.
Yeah, maybe just give a littlebit of background on it so that
someone is not familiar with it.
Speaker 4 (02:18):
So a bat mitzvah or bar mitzvah is when a girl or
boy is what they call.
It called to the Torah and toread from the Torah, which is
like the Jewish Bible and webasically read apart from the
Torah and after it basicallymeans that you're like,
considered a woman or a man so Iguess the big burning question
(02:52):
is why did you want to do this?
Speaker 3 (02:53):
why did you want to make talking about Parkinson's
part of your mitzvah project?
Speaker 4 (02:56):
I think I have since, like my grandpa was diagnosed,
was it?
I think it was like four yearsago, so I always kind of wanted
to do it.
It means a lot to me.
Speaker 3 (03:09):
I'm guessing from all of our conversations that we've
had previously that you andyour grandpa are pretty close.
Would you say that's okay, soyou've had a pretty good
relationship with him.
Well, that's wonderful.
And how has the ParkinsonParkinson's do you feel like
it's changed your relationshipsince you first started, you
(03:31):
know, in being a little bitolder and and spending more time
with him?
Speaker 4 (03:37):
no, I feel like I can talk to him about it more than
I could when I was younger,because now I feel like I
understand it more, like I likewhen, like he talks about, like
if you notice somethingdifferent that's going on, like
I talk about it with him, orlike when he started noticing it
, like we talk about it, but Ihaven't noticed much of a
(03:57):
difference.
Speaker 3 (03:58):
You haven't.
I'm curious who was the onethat told you that your grandpa
had Parkinson's?
Did he tell you, or did yourparents tell you?
Speaker 4 (04:07):
It was basically it was during Zoom, like during
COVID, and I came down and mymom was sitting on the couch
crying and I didn't know why,and she said that he had
Parkinson's and I just had a lotof questions on what it was.
Speaker 3 (04:23):
So, leslie, was it hard for you to be able to
express your feelings and andall the emotion that you had,
being able to tell your daughter, who was at that time, what
nine?
Speaker 1 (04:35):
Yeah.
Speaker 3 (04:37):
Eight, maybe, yeah.
Speaker 1 (04:38):
It was definitely.
You know, I've I'm one of the,I'm very close with my both of
my parents and I think that myparents are going to live
forever and I want them to liveforever.
So I think, while you know theinitial diagnosis was definitely
(05:01):
shocking, I remember my brothersaying to me you know, it could
be so much worse.
It's not a cancer diagnosis oryou know something that is
imminent, um, and I really kindof took that I can be a real
like catastrophizer and allaspects of my life and kind of
(05:22):
always go to the worst possibleplace.
But we've really been able tostay super positive, mostly
because my dad is so positiveand he is really doing all of
the things that he should bedoing to stay as healthy as long
as possible.
He does, you know, boxing classthree times a week, specific
(05:46):
for Parkinson's patients.
He's has a personal trainer andhe's walking and golfing and,
you know, doing physical therapyand all of the things that I
think have really helped him tobe his best, given his diagnosis
.
Um, and so I think we all feelreally lucky that um he's
(06:10):
putting in so much work to tryto, you know, stay as healthy
and, um as mobile as possible.
He, you know he still loves totravel and we get to go with
them a lot of the time.
So, um, we really feelfortunate that he's, you know,
putting in all the effort thatit takes for him to continue to
(06:31):
be with all of us and, you know,especially with them.
I think the kids really help tokeep him young as well.
Speaker 3 (06:38):
Absolutely so when you go on trips, evie, like, do
you feel like you're, do youever have anxiety about going on
a trip with him, or do everhave anxiety about going on a
trip with him, or do you feelpretty comfortable going on a
trip with him at this point?
Speaker 4 (06:50):
I feel comfortable.
I think because I know ifsomething were to ever happen,
all of us would definitely helpand if we're ever going
downstairs or doing somethingthat could risk him getting hurt
, we always help him.
And I don't get worried because, like my mom said, he's
(07:15):
positive and I feel like he'llbe fine.
Speaker 3 (07:19):
Yeah, and let's take a look at that for a minute too,
because I think, for peoplelistening, we have a lot of
listeners that have Parkinson'sand we have care partners.
But the takeaway from thisconversation thus far is that
because he is so positive and heis assured that it's going to
be okay even though he hasParkinson's he's not letting it
(07:41):
sort of define him at thismoment.
It's making it easier for youall to have a great relationship
with him.
Speaker 1 (07:48):
Yes, yeah, he's very open about his diagnosis and
what he's feeling or when he hashis good days or his harder
days or whatever it is.
He's very communicative aboutit and you know, I think his the
best part about him is hissense of humor, so he can really
(08:13):
kind of make light of all thesituations and you know we all
can laugh and you know it's itmakes it makes a really big
difference, I think, for all ofus to be able to kind of have
that rapport around it and, youknow all of us to really try to
stay positive.
Speaker 3 (08:30):
I think that's wonderful, that's really good.
Speaker 2 (08:36):
Yes, because, given the choice of laughing about it
or crying about it, I prefer theformer.
Speaker 1 (08:53):
Absolutely Both happen, that's for sure.
There's laughs and there'stears, but the laughs Sometimes
it's a mix of both.
Speaker 3 (09:02):
Exactly, yeah, exactly, that's totally true.
It's a laugh for the tears,right, and you feel okay with
that.
It sounds like your, the wayyour family is handling it.
You've um, you've reallyaccepted this and you do it as a
family.
You're together with your, theway you're approaching it, that
no one feels really your, yourgrandpa, doesn't feel isolated.
(09:24):
I'm assuming your grandmotherdoesn't feel isolated and that
you don't feel isolated.
I'm assuming your grandmotherdoesn't feel isolated and that
you don't feel isolated with it.
If you had fears, it soundslike you might be comfortable
expressing them to the family oreven to him directly, which I
think is amazing.
Travis and I have thisconversation all the time with
(09:45):
people about, you know, giving alittle more credit to the
person with Parkinson's to knowwhat's going on with the care
partners, rather than trying tohide your emotions, which I
think sometimes is difficult todo.
Speaker 1 (10:01):
Yeah, I mean my mom, you know doesn't have to do too
much yet but um, you know she's,I can see for her and you know
always just kind of keeping allof us in the loop of things.
You know that are going on andum, and you know for him too,
but Right, which is reallyimportant.
Speaker 3 (10:24):
I can tell you that there's a lot of people that are
have a tendency to not discussit with their children, their
adult children or theirgrandchildren and they want to
keep without.
They think it's going to bemore of a burden.
So I think it's really good tohear the fact that your family
is keeping it very open and howthat that's been really very
(10:47):
therapeutic for all of you.
Speaker 1 (10:48):
Yeah, yeah, we definitely talk.
I think sometimes my parentswill maybe be a little nervous
to share things with me because,as I said, I am a
catastrophizer.
So I think sometimes they waituntil you know not so much with
you know, my any, any, not maybeso much with my dad's stuff,
because now we know what it is,but with other things, I think
(11:11):
sometimes they're like we'regonna wait until we get this
checked out before we share withher.
Right, I will naturally justspin and you know, good old
doctor, google tells me yes,stay off of google.
No, google no, which I'm likeoh yeah, yep, that symptom, that
symptom, that symptom, thatsymptom, yep, which makes it
(11:32):
that yeah, yeah, exactly.
Speaker 3 (11:37):
So from my standpoint , as I'm listening to you, I'm
curious.
When you went into this Evie,you decided bat mitzvah is such
a big step and you study for ayear or more for this important
time.
How did you see yourself, orhow did you see this project
(11:58):
manifest?
What did you want to get fromit for yourself and what did you
want others to see with it?
Speaker 4 (12:07):
I wanted others to almost see that Parkinson's is a
disease, but it also shouldn'tdefine somebody.
I think there's so much morethan that, and also that for me.
I wanted to show that like Ican help the community.
Speaker 3 (12:27):
By sort of sharing your story and maybe help other
teens, which I think is soimportant, because I think a lot
of families, I think, don't lettheir children know what's
going on.
The grandchildren, they'realways trying to shield them
from the information.
And you're clearly smart enoughto see that something is going
(12:47):
on, no question about it.
Speaker 1 (12:50):
I think we overshare in this family.
Speaker 3 (12:54):
I have one of those families too, we were
oversharers.
I understand it, but I do alsoappreciate the fact that there
are other families that have avery difficult time sharing that
kind of information.
Yeah, and medical informationfor many of us can be very
frightening.
(13:14):
So you know it's a scarythought first, and then finding
the right time.
So did he tell you sort of assoon as he got the diagnosis, or
did they wait a little bit?
Speaker 1 (13:26):
No, they told us right away.
Speaker 3 (13:28):
Right away.
Speaker 1 (13:30):
Yeah, he had had a tremor for probably like six or
eight months and he'd gone justto his regular doctor and at
first they said maybe you needmagnesium or like all these.
They were suggesting he takessupplements.
But you need magnesium or likeall these, you know, they were
suggesting he takes supplements.
And then it obviously keptgoing.
And when he went to theneurologist, I mean she looked
(13:54):
at him and immediately it waslike you have Parkinson's.
Speaker 4 (13:56):
Right.
Speaker 1 (13:57):
So it was a very quick diagnosis and he you know,
he, I think called me thesecond they got in the car right
so.
Speaker 3 (14:14):
I think that's great that you were able to be able to
that.
He was able to express himselfso clearly at the beginning and
be so forthright with it yeahnot everyone feels that way.
Speaker 1 (14:30):
Right, right.
Speaker 3 (14:32):
Yeah, another one.
No, I was going to say we'vetalked to a lot of people that
have really had a lot of fearand anxiety over talking to
their friends.
Evie, do you ever talk to yourfriends about it?
Like, have you ever told yourfriends about your grandpa's
Parkinson's, or is thatsomething that you kind of keep
(14:55):
to yourself?
I'm curious.
Speaker 4 (14:57):
I don't just like bring it up and I'm just, I'm
not like, oh, my grandpa hasParkinson's, if it's something
that relates to it somehow.
Or if somebody's like oh, whatare you doing for your Metro
project, I'll explain.
Or like as some, or like that'sall come up like I don't
usually I don't go think aroundgoing like, oh, my grandpa's
parking right right, it's notsomething you brag about yeah I
(15:19):
just got a horse you know, oh,we do know a lot of people who
have parents similarly aged tomine that one of their parents
has Parkinson's.
Speaker 1 (15:35):
We do and I don't know.
I think it's interesting to seehow other families deal with it
.
In fact, one of my very, verygood friends from high school,
who lived not far from myparents, his father had
Parkinson's and he unfortunatelypassed away and he was only.
(15:55):
He'd only been diagnosed maybefive or six years prior to
passing away but his was like uh, well, no, it was more like
mental and psychological stuffand um, the physical aspects of
it, I think, um, you know, itwas a very, it was just a very
(16:20):
different um outcome andexperience the entire time.
But it was nice having him totalk to about it.
His dad had been diagnosed priorto my dad, not by a lot, but
they reconnected in their boxingclass, their Rock City boxing
class, and so I think that myfriend Tyler's mom had said to
(16:43):
Tyler mom, you know, had said toTyler, I think I saw, you know,
leslie's dad and and your dad'sParkinson's boxing class, and
then he reached out and said youknow, it's been a while, but my
mom said that she thinks shesaw your dad and the boxing
class, and you know, I hope thatit wasn't him, but if it is,
you know I would love to connect, and so we really were able to
(17:04):
connect over that, which wasit's.
I think it's nice for like foryou and you know, as, as a care
what's the term you use Carepartner, care partner to have
people that you can, you know,talk to, um, that are going
through similar, similarsituation, um, that you guys can
(17:24):
share.
It's like raising kids.
It's like when you'reexperiencing these things and
your kids are having a sleepregression or they're teething
or all of these things.
It's nice to have someone whocan relate to that, that you can
talk to and they say, well,this is what happened to me, or
just to listen, and that theycan understand.
Speaker 3 (17:40):
Right, I think that's so true.
I mean, this is why we're bigproponents of support groups,
because it can really give youan opportunity to be able to
speak with other people that aregoing through similar not
necessarily the same thing,because, as we know, everybody's
(18:01):
Parkinson's is very different,it manifests differently and it
will behave quite differentlyfrom person to person.
So you know, that's the onething we know for sure.
No two are alike, there'salways.
But it is great to have thatcommon experience and I think,
(18:21):
being a child, an adult child ofsomeone with Parkinson's,
there's a lot of value intalking to a friend or feeling
some camaraderie with it.
You know, I can see that.
Yeah, I can see that that thatwould really make it Support
groups, support groups.
Have you, evie?
(18:41):
I'm curious.
You know we've talked a longtime in PCLA about we'd love to
do a support group for teens.
Is that something?
I'm just curious?
Is that something that wouldever interest you, like if you
heard that there was going to bea support group for teens about
Parkinson's.
Whether it's a grandparent or aparent, would you want to do
(19:02):
something like that?
I'm just kind of throwing thatout to you.
It's an interesting thought tome to see You're pretty evolved.
Speaker 4 (19:10):
Yeah, I'd be down Like I'd be like either.
It was just like like I would,100% yeah.
Speaker 3 (19:20):
You would.
You would feel confident doingthat.
Okay, that's good to know.
I'm making a little mental notehere.
I always like to to ask a fewthings like that.
Okay, that's good to know, I'mmaking a little mental note here
.
Speaker 1 (19:29):
I always like to to ask a few things.
It'd be good too because she's,you know, only 12 that then,
like parents, would also have tobe there.
So it could be a goodopportunity for my generation to
be able to connect as well withyou know people who like, maybe
like can relate to.
Speaker 3 (19:50):
If you were to meet someone you know let's say you
met perfectly.
You met another family, somefamily that you did not know,
but they had a young person intheir family that's somewhere
between the ages of 12 and,let's say, 60, what would be
something you would say to themabout your experience, or would
(20:11):
you have advice for them or anytips, anything like that?
Speaker 4 (20:17):
I would just tell them no matter, even in the hard
times, everything's going toend up being okay.
And you just have to know thatnot everything's full of joy and
like, you just have to likeknow that like not everything's
full of joy.
And also, I feel like I kind ofthought about this like a
little bit ago, but I kind offeel like diseases are sometimes
like roller coasters.
(20:37):
You sometimes will go up and behappy, but you don't know when
it can go down.
You don't know when the rollercoaster will go back down.
Like that's kind of how I thinkof it.
Speaker 3 (20:47):
I think that's a very , very good point and very
astute of you to see that at age12, you know that's pretty
amazing that you recognize thatnot too many people do, and I
think that's really great.
So yeah, in the overall scheme,now we're doing the podcast.
(21:11):
This goes out to a lot ofpeople in a lot of different
countries, as well as the US.
What do you want them to knowabout Parkinson's, or
Parkinson's awareness?
What do you think would helppeople to understand Parkinson's
a little bit?
Speaker 4 (21:29):
I feel like it'd be helpful if I don't know, it's
okay, like, maybe, like, if Iwere like to describe, like a
short summary of what it is, Iguess like did you look on
(21:50):
Google after you found out aboutthe diagnosis?
Speaker 3 (21:53):
Do you do stuff like that, or did you just let your
parents tell you?
Speaker 4 (21:57):
Well, I was little, so like I didn't really know how
to you didn't know at thatpoint, you wouldn't have been
able to do it right.
Speaker 1 (22:03):
Yeah, I think the thing that I've found to be like
the most interesting, as it'shappened, is it feels like it's
actually really common that youknow you can be almost anywhere
and there's someone else therewho has a parent or a
grandparent or somebody who has,you know, that has had
(22:24):
Parkinson's in their family, andI think that is what's it's.
It's crazy how I think that iswhat's it's crazy how you know,
I don't want to say it's common,but it is pretty common.
It is common, it's very common.
Now it's kind of shocking howmany people have it and are
(22:46):
diagnosed with it.
Um, and I think the really crazypart which I talk about you
know with my family but howthey've really made very little
progress in finding any sort ofcure and there's not been any
new.
I know that there's things likeoutside of the U?
(23:07):
S?
Um, but typically they're notuntil you know, I mean and you
guys might know more than me,I'm sure that you do, but that
you know until you're muchfurther along in the progression
of the disease, um, which itwould seem to me like it would
be good to have something thatyou know slows the progression
(23:27):
from the get-go, instead ofbeing at that point where you're
desperate trying to figure out,kind of like grasping at straws
.
Speaker 3 (23:37):
Yeah Right, I mean, the truth of the matter is when
my husband Sandy was diagnosedin the early 2000s, they said oh
, we're very close to a cure.
Then it got to be 2010, 2012,.
We're very close to a cure.
But it got to be 2010, 2012,very close to a cure.
But the truth of the matter is Ithink it's been explained
(23:58):
numerous times by manyinternationally recognized
movement disorder specialiststhat part of the challenge here
with finding the cure is theydon't know exactly what causes
it and for different people,different things.
It may be caused by differentthings.
There can be environmental, itmay start in the gut, it can
(24:21):
start in the brain, it can startin the olfactory bulb.
There's so many different waysit can manifest cognitively as
an issue first.
I mean, there's so many placesand so many different ways.
So I think for those of usliving in the Parkinson's
community and in thisParkinson's space of wanting the
(24:44):
cure in the meantime, we haveto look at what are the things
we can do to help ourselvesright now, and I think what your
dad is doing is fantasticExercise, exercise, exercise,
socialization, exercise,socialization, understanding,
going to support groups,understanding what you have
(25:06):
available to you, and I'm surethat many of our listeners have
tried some clinical trials aswell and that that's always an
opportunity for people to dothings.
So I think that whatever we cando to let people be more aware
of what Parkinson's is andcertainly Travis has opened his
(25:31):
life through this podcast to somany people- I have a request,
evie, had you ever heard ofParkinson's disease before your
grandpa was was diagnosed?
Speaker 4 (25:51):
I don't think so.
Speaker 2 (25:54):
Leslie, had you heard of Parkinson's?
Yes?
Speaker 3 (26:03):
Yes, okay, what did you think it was, or what was
your image of what Parkinson'sdisease was?
Speaker 1 (26:09):
Michael J Fox was my image.
I, you know, grew up watchingFamily Ties and you know those
things.
So that was.
You know what I had.
You can just leave it.
That's what I had sort ofenvisioned.
Obviously, I've known, you know, he's had it for so many years.
(26:30):
So, and the documentary that hedid came out after my dad had
been diagnosed, when I so, butno, I mean, I had known of it
and I knew, you know what it was, but I didn't have anyone that
I was close to that had beendiagnosed before my dad.
Speaker 3 (26:53):
All right.
Well, as we're starting to wrapthis up, evie, is there
anything that you would like tosay to people that you want to
talk about, and do you have agoal for your project?
Or is it just your goal,awareness?
Let's look at what you reallyare thinking about with this.
Speaker 4 (27:12):
Yeah, I think just people should be aware that
Parkinson's is a disease that,like I guess, can not hurt.
I don't know what the rightword would be.
That it can affect.
Speaker 1 (27:34):
Yeah, it can affect not just the person but like
anybody else around them oranybody else who has a
connection to them and that,like parkinson's like, is
something that yeah, I think theother thing we would want to
that we're going to try to do isum to help raise money for pcla
and um have the opportunity totry to help you in your
(27:54):
organization because it's soimportant to what you're doing
and um.
You know I, like I said, Ithink the thing that's helped my
dad so much too, is thecommunity that he has in Seattle
and um.
You know the organizationthat's based there that has
really helped him and introducedhim to um.
You know other Parkinson'spatients and um.
(28:18):
I think for him that's alsobeen really helpful.
And since we're based here inLA, um, and we're just we're
excited to know you and get toknow you even more and continue
to try to help and support whatyou're doing because it's really
so important.
Speaker 3 (28:35):
Thank you so much, and we're just happy to do this.
This has been really great forus.
Travis, do you have any closingthoughts, anything you want to
share?
Speaker 2 (28:47):
No, but I will keep tabs on you, Amy.
I want to know what you decideto grow up to be.
Speaker 3 (29:04):
Absolutely.
Speaker 2 (29:06):
Any thoughts right now.
Speaker 4 (29:09):
On what I want to be when I grow up.
Yeah, an interior designer.
I've been wanting to do itsince I was in like kindergarten
Wow, I love it.
Speaker 1 (29:18):
Yeah, my family.
I grew up in the furniturebusiness, so it's in our blood.
Speaker 3 (29:24):
It's in the blood.
Genetically, you're justpredisposed.
Speaker 1 (29:27):
Exactly, exactly, so we'll keep it going in some way.
That's great yeah.
Speaker 3 (29:31):
Exactly so.
We'll keep it going in some way.
That's great.
It's a wonderful way to do it,very creative.
Speaker 4 (29:35):
Yeah, it was your dad's company, it was.
Speaker 1 (29:38):
My great-grandfather actually started.
Oh, that's fantastic.
Yeah, so my other daughter isalso.
She is in that realm ofinterior design or architecture.
Speaker 3 (29:54):
They're both creative , so we'll channel that, channel
that, and I think that youwould both.
You and your husband are alsocreative.
So, that's great.
Speaker 1 (30:00):
Yeah, that wasn't so far from the tree.
Speaker 3 (30:03):
No, not too far.
Speaker 1 (30:04):
Yeah.
Speaker 3 (30:04):
Well, thank you so much for giving us the time and
spreading the word and thank youfor the opportunity to help
PCLA.
We really appreciate it and,coming on the Indie Podcast, it
means a lot to Travis and myself.
Speaker 2 (30:19):
And that's a wrap, bing.
Welcome to I'm Not Dead Yet, with Judy and Travis,
a podcast about living anextraordinary life with
extraordinary circumstances.
Speaker 2 (00:17):
Welcome to the I'm Not Dead Yet podcast.
I'm your co-host, TravisRobinson.
I was diagnosed withParkinson's disease at age 35 in
(00:38):
2014.
Speaker 3 (00:43):
And I'm your other co-host, judy Yarris.
My husband Sandy hadParkinson's disease for 18 years
.
Speaker 2 (00:50):
I was his care partner Today's episode we have
the privilege of talking to twoladies who are intimately
familiar with Parkinson's, asthey are the daughter and
(01:13):
granddaughter of a BD patient.
Speaker 3 (01:20):
That's right, travis.
We're very fortunate.
Today we're doing something alittle bit different.
Today we're speaking withLeslie Grosvenor and her
daughter, evie, and today'sinterview welcome Evie and
Leslie.
And today's interview is alittle bit different because
Evie is actually our main personthat we are going to be talking
(01:42):
with today, and I just want tosay that Evie is 13 and getting
ready to do her bat mitzvah, andso this podcast is going to be
part of her mitzvah project forher bat mitzvah, and we may have
some listeners that don't knowany of this or what it means, so
(02:03):
maybe one of you could describethis to us and kind of let our
listeners know, describe what abat mitzvah is.
Yeah, maybe just give a littlebit of background on it so that
someone is not familiar with it.
Speaker 4 (02:18):
So a bat mitzvah or bar mitzvah is when a girl or
boy is what they call.
It called to the Torah and toread from the Torah, which is
like the Jewish Bible and webasically read apart from the
Torah and after it basicallymeans that you're like,
considered a woman or a man so Iguess the big burning question
(02:52):
is why did you want to do this?
Speaker 3 (02:53):
why did you want to make talking about Parkinson's
part of your mitzvah project?
Speaker 4 (02:56):
I think I have since, like my grandpa was diagnosed,
was it?
I think it was like four yearsago, so I always kind of wanted
to do it.
It means a lot to me.
Speaker 3 (03:09):
I'm guessing from all of our conversations that we've
had previously that you andyour grandpa are pretty close.
Would you say that's okay, soyou've had a pretty good
relationship with him.
Well, that's wonderful.
And how has the ParkinsonParkinson's do you feel like
it's changed your relationshipsince you first started, you
(03:31):
know, in being a little bitolder and and spending more time
with him?
Speaker 4 (03:37):
no, I feel like I can talk to him about it more than
I could when I was younger,because now I feel like I
understand it more, like I likewhen, like he talks about, like
if you notice somethingdifferent that's going on, like
I talk about it with him, orlike when he started noticing it
, like we talk about it, but Ihaven't noticed much of a
(03:57):
difference.
Speaker 3 (03:58):
You haven't.
I'm curious who was the onethat told you that your grandpa
had Parkinson's?
Did he tell you, or did yourparents tell you?
Speaker 4 (04:07):
It was basically it was during Zoom, like during
COVID, and I came down and mymom was sitting on the couch
crying and I didn't know why,and she said that he had
Parkinson's and I just had a lotof questions on what it was.
Speaker 3 (04:23):
So, leslie, was it hard for you to be able to
express your feelings and andall the emotion that you had,
being able to tell your daughter, who was at that time, what
nine?
Speaker 1 (04:35):
Yeah.
Speaker 3 (04:37):
Eight, maybe, yeah.
Speaker 1 (04:38):
It was definitely.
You know, I've I'm one of the,I'm very close with my both of
my parents and I think that myparents are going to live
forever and I want them to liveforever.
So I think, while you know theinitial diagnosis was definitely
(05:01):
shocking, I remember my brothersaying to me you know, it could
be so much worse.
It's not a cancer diagnosis oryou know something that is
imminent, um, and I really kindof took that I can be a real
like catastrophizer and allaspects of my life and kind of
(05:22):
always go to the worst possibleplace.
But we've really been able tostay super positive, mostly
because my dad is so positiveand he is really doing all of
the things that he should bedoing to stay as healthy as long
as possible.
He does, you know, boxing classthree times a week, specific
(05:46):
for Parkinson's patients.
He's has a personal trainer andhe's walking and golfing and,
you know, doing physical therapyand all of the things that I
think have really helped him tobe his best, given his diagnosis
.
Um, and so I think we all feelreally lucky that um he's
(06:10):
putting in so much work to tryto, you know, stay as healthy
and, um as mobile as possible.
He, you know he still loves totravel and we get to go with
them a lot of the time.
So, um, we really feelfortunate that he's, you know,
putting in all the effort thatit takes for him to continue to
(06:31):
be with all of us and, you know,especially with them.
I think the kids really help tokeep him young as well.
Speaker 3 (06:38):
Absolutely so when you go on trips, evie, like, do
you feel like you're, do youever have anxiety about going on
a trip with him, or do everhave anxiety about going on a
trip with him, or do you feelpretty comfortable going on a
trip with him at this point?
Speaker 4 (06:50):
I feel comfortable.
I think because I know ifsomething were to ever happen,
all of us would definitely helpand if we're ever going
downstairs or doing somethingthat could risk him getting hurt
, we always help him.
And I don't get worried because, like my mom said, he's
(07:15):
positive and I feel like he'llbe fine.
Speaker 3 (07:19):
Yeah, and let's take a look at that for a minute too,
because I think, for peoplelistening, we have a lot of
listeners that have Parkinson'sand we have care partners.
But the takeaway from thisconversation thus far is that
because he is so positive and heis assured that it's going to
be okay even though he hasParkinson's he's not letting it
(07:41):
sort of define him at thismoment.
It's making it easier for youall to have a great relationship
with him.
Speaker 1 (07:48):
Yes, yeah, he's very open about his diagnosis and
what he's feeling or when he hashis good days or his harder
days or whatever it is.
He's very communicative aboutit and you know, I think his the
best part about him is hissense of humor, so he can really
(08:13):
kind of make light of all thesituations and you know we all
can laugh and you know it's itmakes it makes a really big
difference, I think, for all ofus to be able to kind of have
that rapport around it and, youknow all of us to really try to
stay positive.
Speaker 3 (08:30):
I think that's wonderful, that's really good.
Speaker 2 (08:36):
Yes, because, given the choice of laughing about it
or crying about it, I prefer theformer.
Speaker 1 (08:53):
Absolutely Both happen, that's for sure.
There's laughs and there'stears, but the laughs Sometimes
it's a mix of both.
Speaker 3 (09:02):
Exactly, yeah, exactly, that's totally true.
It's a laugh for the tears,right, and you feel okay with
that.
It sounds like your, the wayyour family is handling it.
You've um, you've reallyaccepted this and you do it as a
family.
You're together with your, theway you're approaching it, that
no one feels really your, yourgrandpa, doesn't feel isolated.
(09:24):
I'm assuming your grandmotherdoesn't feel isolated and that
you don't feel isolated.
I'm assuming your grandmotherdoesn't feel isolated and that
you don't feel isolated with it.
If you had fears, it soundslike you might be comfortable
expressing them to the family oreven to him directly, which I
think is amazing.
Travis and I have thisconversation all the time with
(09:45):
people about, you know, giving alittle more credit to the
person with Parkinson's to knowwhat's going on with the care
partners, rather than trying tohide your emotions, which I
think sometimes is difficult todo.
Speaker 1 (10:01):
Yeah, I mean my mom, you know doesn't have to do too
much yet but um, you know she's,I can see for her and you know
always just kind of keeping allof us in the loop of things.
You know that are going on andum, and you know for him too,
but Right, which is reallyimportant.
Speaker 3 (10:24):
I can tell you that there's a lot of people that are
have a tendency to not discussit with their children, their
adult children or theirgrandchildren and they want to
keep without.
They think it's going to bemore of a burden.
So I think it's really good tohear the fact that your family
is keeping it very open and howthat that's been really very
(10:47):
therapeutic for all of you.
Speaker 1 (10:48):
Yeah, yeah, we definitely talk.
I think sometimes my parentswill maybe be a little nervous
to share things with me because,as I said, I am a
catastrophizer.
So I think sometimes they waituntil you know not so much with
you know, my any, any, not maybeso much with my dad's stuff,
because now we know what it is,but with other things, I think
(11:11):
sometimes they're like we'regonna wait until we get this
checked out before we share withher.
Right, I will naturally justspin and you know, good old
doctor, google tells me yes,stay off of google.
No, google no, which I'm likeoh yeah, yep, that symptom, that
symptom, that symptom, thatsymptom, yep, which makes it
(11:32):
that yeah, yeah, exactly.
Speaker 3 (11:37):
So from my standpoint , as I'm listening to you, I'm
curious.
When you went into this Evie,you decided bat mitzvah is such
a big step and you study for ayear or more for this important
time.
How did you see yourself, orhow did you see this project
(11:58):
manifest?
What did you want to get fromit for yourself and what did you
want others to see with it?
Speaker 4 (12:07):
I wanted others to almost see that Parkinson's is a
disease, but it also shouldn'tdefine somebody.
I think there's so much morethan that, and also that for me.
I wanted to show that like Ican help the community.
Speaker 3 (12:27):
By sort of sharing your story and maybe help other
teens, which I think is soimportant, because I think a lot
of families, I think, don't lettheir children know what's
going on.
The grandchildren, they'realways trying to shield them
from the information.
And you're clearly smart enoughto see that something is going
(12:47):
on, no question about it.
Speaker 1 (12:50):
I think we overshare in this family.
Speaker 3 (12:54):
I have one of those families too, we were
oversharers.
I understand it, but I do alsoappreciate the fact that there
are other families that have avery difficult time sharing that
kind of information.
Yeah, and medical informationfor many of us can be very
frightening.
(13:14):
So you know it's a scarythought first, and then finding
the right time.
So did he tell you sort of assoon as he got the diagnosis, or
did they wait a little bit?
Speaker 1 (13:26):
No, they told us right away.
Speaker 3 (13:28):
Right away.
Speaker 1 (13:30):
Yeah, he had had a tremor for probably like six or
eight months and he'd gone justto his regular doctor and at
first they said maybe you needmagnesium or like all these.
They were suggesting he takessupplements.
But you need magnesium or likeall these, you know, they were
suggesting he takes supplements.
And then it obviously keptgoing.
And when he went to theneurologist, I mean she looked
(13:54):
at him and immediately it waslike you have Parkinson's.
Speaker 4 (13:56):
Right.
Speaker 1 (13:57):
So it was a very quick diagnosis and he you know,
he, I think called me thesecond they got in the car right
so.
Speaker 3 (14:14):
I think that's great that you were able to be able to
that.
He was able to express himselfso clearly at the beginning and
be so forthright with it yeahnot everyone feels that way.
Speaker 1 (14:30):
Right, right.
Speaker 3 (14:32):
Yeah, another one.
No, I was going to say we'vetalked to a lot of people that
have really had a lot of fearand anxiety over talking to
their friends.
Evie, do you ever talk to yourfriends about it?
Like, have you ever told yourfriends about your grandpa's
Parkinson's, or is thatsomething that you kind of keep
(14:55):
to yourself?
I'm curious.
Speaker 4 (14:57):
I don't just like bring it up and I'm just, I'm
not like, oh, my grandpa hasParkinson's, if it's something
that relates to it somehow.
Or if somebody's like oh, whatare you doing for your Metro
project, I'll explain.
Or like as some, or like that'sall come up like I don't
usually I don't go think aroundgoing like, oh, my grandpa's
parking right right, it's notsomething you brag about yeah I
(15:19):
just got a horse you know, oh,we do know a lot of people who
have parents similarly aged tomine that one of their parents
has Parkinson's.
Speaker 1 (15:35):
We do and I don't know.
I think it's interesting to seehow other families deal with it
.
In fact, one of my very, verygood friends from high school,
who lived not far from myparents, his father had
Parkinson's and he unfortunatelypassed away and he was only.
(15:55):
He'd only been diagnosed maybefive or six years prior to
passing away but his was like uh, well, no, it was more like
mental and psychological stuffand um, the physical aspects of
it, I think, um, you know, itwas a very, it was just a very
(16:20):
different um outcome andexperience the entire time.
But it was nice having him totalk to about it.
His dad had been diagnosed priorto my dad, not by a lot, but
they reconnected in their boxingclass, their Rock City boxing
class, and so I think that myfriend Tyler's mom had said to
(16:43):
Tyler mom, you know, had said toTyler, I think I saw, you know,
leslie's dad and and your dad'sParkinson's boxing class, and
then he reached out and said youknow, it's been a while, but my
mom said that she thinks shesaw your dad and the boxing
class, and you know, I hope thatit wasn't him, but if it is,
you know I would love to connect, and so we really were able to
(17:04):
connect over that, which wasit's.
I think it's nice for like foryou and you know, as, as a care
what's the term you use Carepartner, care partner to have
people that you can, you know,talk to, um, that are going
through similar, similarsituation, um, that you guys can
(17:24):
share.
It's like raising kids.
It's like when you'reexperiencing these things and
your kids are having a sleepregression or they're teething
or all of these things.
It's nice to have someone whocan relate to that, that you can
talk to and they say, well,this is what happened to me, or
just to listen, and that theycan understand.
Speaker 3 (17:40):
Right, I think that's so true.
I mean, this is why we're bigproponents of support groups,
because it can really give youan opportunity to be able to
speak with other people that aregoing through similar not
necessarily the same thing,because, as we know, everybody's
(18:01):
Parkinson's is very different,it manifests differently and it
will behave quite differentlyfrom person to person.
So you know, that's the onething we know for sure.
No two are alike, there'salways.
But it is great to have thatcommon experience and I think,
(18:21):
being a child, an adult child ofsomeone with Parkinson's,
there's a lot of value intalking to a friend or feeling
some camaraderie with it.
You know, I can see that.
Yeah, I can see that that thatwould really make it Support
groups, support groups.
Have you, evie?
(18:41):
I'm curious.
You know we've talked a longtime in PCLA about we'd love to
do a support group for teens.
Is that something?
I'm just curious?
Is that something that wouldever interest you, like if you
heard that there was going to bea support group for teens about
Parkinson's.
Whether it's a grandparent or aparent, would you want to do
(19:02):
something like that?
I'm just kind of throwing thatout to you.
It's an interesting thought tome to see You're pretty evolved.
Speaker 4 (19:10):
Yeah, I'd be down Like I'd be like either.
It was just like like I would,100% yeah.
Speaker 3 (19:20):
You would.
You would feel confident doingthat.
Okay, that's good to know.
I'm making a little mental notehere.
I always like to to ask a fewthings like that.
Okay, that's good to know, I'mmaking a little mental note here
.
Speaker 1 (19:29):
I always like to to ask a few things.
It'd be good too because she's,you know, only 12 that then,
like parents, would also have tobe there.
So it could be a goodopportunity for my generation to
be able to connect as well withyou know people who like, maybe
like can relate to.
Speaker 3 (19:50):
If you were to meet someone you know let's say you
met perfectly.
You met another family, somefamily that you did not know,
but they had a young person intheir family that's somewhere
between the ages of 12 and,let's say, 60, what would be
something you would say to themabout your experience, or would
(20:11):
you have advice for them or anytips, anything like that?
Speaker 4 (20:17):
I would just tell them no matter, even in the hard
times, everything's going toend up being okay.
And you just have to know thatnot everything's full of joy and
like, you just have to likeknow that like not everything's
full of joy.
And also, I feel like I kind ofthought about this like a
little bit ago, but I kind offeel like diseases are sometimes
like roller coasters.
(20:37):
You sometimes will go up and behappy, but you don't know when
it can go down.
You don't know when the rollercoaster will go back down.
Like that's kind of how I thinkof it.
Speaker 3 (20:47):
I think that's a very , very good point and very
astute of you to see that at age12, you know that's pretty
amazing that you recognize thatnot too many people do, and I
think that's really great.
So yeah, in the overall scheme,now we're doing the podcast.
(21:11):
This goes out to a lot ofpeople in a lot of different
countries, as well as the US.
What do you want them to knowabout Parkinson's, or
Parkinson's awareness?
What do you think would helppeople to understand Parkinson's
a little bit?
Speaker 4 (21:29):
I feel like it'd be helpful if I don't know, it's
okay, like, maybe, like, if Iwere like to describe, like a
short summary of what it is, Iguess like did you look on
(21:50):
Google after you found out aboutthe diagnosis?
Speaker 3 (21:53):
Do you do stuff like that, or did you just let your
parents tell you?
Speaker 4 (21:57):
Well, I was little, so like I didn't really know how
to you didn't know at thatpoint, you wouldn't have been
able to do it right.
Speaker 1 (22:03):
Yeah, I think the thing that I've found to be like
the most interesting, as it'shappened, is it feels like it's
actually really common that youknow you can be almost anywhere
and there's someone else therewho has a parent or a
grandparent or somebody who has,you know, that has had
(22:24):
Parkinson's in their family, andI think that is what's it's.
It's crazy how I think that iswhat's it's crazy how you know,
I don't want to say it's common,but it is pretty common.
It is common, it's very common.
Now it's kind of shocking howmany people have it and are
(22:46):
diagnosed with it.
Um, and I think the really crazypart which I talk about you
know with my family but howthey've really made very little
progress in finding any sort ofcure and there's not been any
new.
I know that there's things likeoutside of the U?
(23:07):
S?
Um, but typically they're notuntil you know, I mean and you
guys might know more than me,I'm sure that you do, but that
you know until you're muchfurther along in the progression
of the disease, um, which itwould seem to me like it would
be good to have something thatyou know slows the progression
(23:27):
from the get-go, instead ofbeing at that point where you're
desperate trying to figure out,kind of like grasping at straws
.
Speaker 3 (23:37):
Yeah Right, I mean, the truth of the matter is when
my husband Sandy was diagnosedin the early 2000s, they said oh
, we're very close to a cure.
Then it got to be 2010, 2012,.
We're very close to a cure.
But it got to be 2010, 2012,very close to a cure.
But the truth of the matter is Ithink it's been explained
(23:58):
numerous times by manyinternationally recognized
movement disorder specialiststhat part of the challenge here
with finding the cure is theydon't know exactly what causes
it and for different people,different things.
It may be caused by differentthings.
There can be environmental, itmay start in the gut, it can
(24:21):
start in the brain, it can startin the olfactory bulb.
There's so many different waysit can manifest cognitively as
an issue first.
I mean, there's so many placesand so many different ways.
So I think for those of usliving in the Parkinson's
community and in thisParkinson's space of wanting the
(24:44):
cure in the meantime, we haveto look at what are the things
we can do to help ourselvesright now, and I think what your
dad is doing is fantasticExercise, exercise, exercise,
socialization, exercise,socialization, understanding,
going to support groups,understanding what you have
(25:06):
available to you, and I'm surethat many of our listeners have
tried some clinical trials aswell and that that's always an
opportunity for people to dothings.
So I think that whatever we cando to let people be more aware
of what Parkinson's is andcertainly Travis has opened his
(25:31):
life through this podcast to somany people- I have a request,
evie, had you ever heard ofParkinson's disease before your
grandpa was was diagnosed?
Speaker 4 (25:51):
I don't think so.
Speaker 2 (25:54):
Leslie, had you heard of Parkinson's?
Yes?
Speaker 3 (26:03):
Yes, okay, what did you think it was, or what was
your image of what Parkinson'sdisease was?
Speaker 1 (26:09):
Michael J Fox was my image.
I, you know, grew up watchingFamily Ties and you know those
things.
So that was.
You know what I had.
You can just leave it.
That's what I had sort ofenvisioned.
Obviously, I've known, you know, he's had it for so many years.
(26:30):
So, and the documentary that hedid came out after my dad had
been diagnosed, when I so, butno, I mean, I had known of it
and I knew, you know what it was, but I didn't have anyone that
I was close to that had beendiagnosed before my dad.
Speaker 3 (26:53):
All right.
Well, as we're starting to wrapthis up, evie, is there
anything that you would like tosay to people that you want to
talk about, and do you have agoal for your project?
Or is it just your goal,awareness?
Let's look at what you reallyare thinking about with this.
Speaker 4 (27:12):
Yeah, I think just people should be aware that
Parkinson's is a disease that,like I guess, can not hurt.
I don't know what the rightword would be.
That it can affect.
Speaker 1 (27:34):
Yeah, it can affect not just the person but like
anybody else around them oranybody else who has a
connection to them and that,like parkinson's like, is
something that yeah, I think theother thing we would want to
that we're going to try to do isum to help raise money for pcla
and um have the opportunity totry to help you in your
(27:54):
organization because it's soimportant to what you're doing
and um.
You know I, like I said, Ithink the thing that's helped my
dad so much too, is thecommunity that he has in Seattle
and um.
You know the organizationthat's based there that has
really helped him and introducedhim to um.
You know other Parkinson'spatients and um.
(28:18):
I think for him that's alsobeen really helpful.
And since we're based here inLA, um, and we're just we're
excited to know you and get toknow you even more and continue
to try to help and support whatyou're doing because it's really
so important.
Speaker 3 (28:35):
Thank you so much, and we're just happy to do this.
This has been really great forus.
Travis, do you have any closingthoughts, anything you want to
share?
Speaker 2 (28:47):
No, but I will keep tabs on you, Amy.
I want to know what you decideto grow up to be.
Speaker 3 (29:04):
Absolutely.
Speaker 2 (29:06):
Any thoughts right now.
Speaker 4 (29:09):
On what I want to be when I grow up.
Yeah, an interior designer.
I've been wanting to do itsince I was in like kindergarten
Wow, I love it.
Speaker 1 (29:18):
Yeah, my family.
I grew up in the furniturebusiness, so it's in our blood.
Speaker 3 (29:24):
It's in the blood.
Genetically, you're justpredisposed.
Speaker 1 (29:27):
Exactly, exactly, so we'll keep it going in some way.
That's great yeah.
Speaker 3 (29:31):
Exactly so.
We'll keep it going in some way.
That's great.
It's a wonderful way to do it,very creative.
Speaker 4 (29:35):
Yeah, it was your dad's company, it was.
Speaker 1 (29:38):
My great-grandfather actually started.
Oh, that's fantastic.
Yeah, so my other daughter isalso.
She is in that realm ofinterior design or architecture.
Speaker 3 (29:54):
They're both creative , so we'll channel that, channel
that, and I think that youwould both.
You and your husband are alsocreative.
So, that's great.
Speaker 1 (30:00):
Yeah, that wasn't so far from the tree.
Speaker 3 (30:03):
No, not too far.
Speaker 1 (30:04):
Yeah.
Speaker 3 (30:04):
Well, thank you so much for giving us the time and
spreading the word and thank youfor the opportunity to help
PCLA.
We really appreciate it and,coming on the Indie Podcast, it
means a lot to Travis and myself.
Speaker 2 (30:19):
And that's a wrap, bing.
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I’m Jay Shetty host of On Purpose the worlds #1 Mental Health podcast and I’m so grateful you found us. I started this podcast 5 years ago to invite you into conversations and workshops that are designed to help make you happier, healthier and more healed. I believe that when you (yes you) feel seen, heard and understood you’re able to deal with relationship struggles, work challenges and life’s ups and downs with more ease and grace. I interview experts, celebrities, thought leaders and athletes so that we can grow our mindset, build better habits and uncover a side of them we’ve never seen before. New episodes every Monday and Friday. Your support means the world to me and I don’t take it for granted — click the follow button and leave a review to help us spread the love with On Purpose. I can’t wait for you to listen to your first or 500th episode!
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.
24/7 News: The Latest
The latest news in 4 minutes updated every hour, every day.