October 13, 2024 • 29 mins
What if the silent heroes of Parkinson's care aren't the patients themselves but the dedicated partners standing beside them? Join us as we uncover the vital, yet often overshadowed, role of care partners in navigating the Parkinson's journey. Hosts Travis Robinson and Judy Yarris, bring our personal experiences to light, highlighting the emotional and physical hurdles faced by those supporting someone with Parkinson's. Our conversation delves into the reality of denial in newly diagnosed individuals and how this can ripple through their support networks, emphasizing the imperative need for community support and the unsung resources that can make all the difference.
We also explore the evolving landscape of independence, where modern transportation options like Uber and Waymo are reshaping the dynamics of care. The episode sheds light on the importance of self-care and open communication for care partners, especially in a world still reeling from the isolation of the COVID era. Through personal stories, we touch on the unique challenges faced by families dealing with young-onset Parkinson's, offering a message of strength and unity. By sharing both struggles and triumphs, we aim to foster a sense of community and inspire listeners to connect, support, and empower each other through the Parkinson's journey.
- Co-hosts: Judy Yaras & Travis Robinson
- Editor & Audio Engineer: (EP1-100) Spencer Yaras
- Audio Engineering Intern: Ana MacAller
- Social Media Intern: Ana MacAller
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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.
Welcome to the I'm Not Dead Yetpodcast.
(00:21):
I'm your co-host, TravisRobinson.
I was diagnosed withParkinson's disease at age 35 in
2014.
Speaker 2 (00:46):
And I'm your other co-host.
I'm Judy Yarris.
My husband, Sandy, hadParkinson's disease for 18 years
.
I was his care partner.
Today's episode will be talkingabout care partners.
This is one of my favoritetopics and one that a lot of
(01:06):
people don't consider.
You know, we talk aboutParkinson's and we're always
thinking about the person thathas PD, but in reality, the
family has PD, yes, and I thinkthat's really important, and the
care partner can be anyone.
It doesn't have to be a familymember, it doesn't have to be a
(01:30):
spouse or a child or a parent.
It can be a friend and a goodfriend that is there for you,
and so I think it's important tosay to the care partner that
you're not alone.
It's a very thankless job.
I just want to say that.
Speaker 1 (01:49):
Yes, there are 90,000 new cases of PD diagnosed every
year, so you are very much notalone.
Speaker 2 (02:11):
That's right, and that number has really gone up
from a few years ago.
It used to be 60,000.
So it's really skyrocketed andmore happening.
I mean I think in someinstances skyrocketed and more
happening.
I mean I think in someinstances I've heard doctors say
that it's a pandemic ofParkinson's that's occurring and
people always say, well, whyare there so many cases?
(02:33):
And I always say there's somany different factors.
It can be environmental, it canbe injury, it can be, and they
don't know where it starts.
I mean, there's a lot of thingsthat happen with it.
I just heard about another NFLplayer that's been diagnosed
with Parkinson's.
Maybe I'm wrong, I think it wasthe Bears, but maybe he's on
(02:54):
another team now, but anyway.
So I think that what happens isthat we're hearing more and more
about it, and I guess that's myquestion hearing more and more
about it, and I guess that's myquestion.
My question is in underservedareas, the areas where we don't
hear from people, how many morepeople with PD are there that
(03:15):
don't go to the doctor, thatfeel there's a stigma?
If you shake or if you have alittle bit of a tremor or if you
are falling over, you havethese falls and you just don't
want to admit that you've gotsomething going on.
So there's definitely anunderserved population that
we're not even counting Right.
And so I think you know to kindof talk today a little bit
(03:42):
about really like what is therole of the care partner.
I know you and I have discussedthis on different levels,
travis, because when someone isnewly diagnosed, I think family
members immediately freak out,just like the person that was
diagnosed freaks out.
Yeah, that's fair and I don'tthink anyone ever talks about it
(04:05):
.
You know they talk about theperson that's having to deal
with it, but what about thepeople that are in the family?
And I think for this thanklessjob of hanging in there with
someone with PD and it's notthat the person with the people
with Parkinson's aren't grateful?
I just want to say that I knowthat Sandy was totally grateful
(04:30):
and he did thank me, but I alsoknow there were times when I
felt like you know you can thankme for this.
You know I'm not doing it toget the thank you because I love
you and you're my partner.
But there's a certain level ofit that I think people with PD
forget to thank the person thatthey're living with for putting
(04:54):
up with some of the shit thatthey do.
And I know you're guilty ofthis because you like to do
stuff that scares people.
So I say that all the time.
It always scares me.
So I think kudos to Sarah, whois understanding and is there
(05:16):
with you by your side.
But I want to let our listenersknow that it's not an easy road
, the feelings that you have ofthis mixed emotion of I love
them, I want to help them, butyou're sort of a helpless person
in this journey.
(05:36):
You can support them in the waythat they would like to be
supported, but you cannot makethem do anything really and
truly.
Speaker 1 (05:50):
Right and it takes a lot to be able to recognize that
, yes, I think.
Speaker 2 (06:03):
And there's a lot of cases where the partner, the
care partner, acknowledges itand accepts it and says, oh, my
partner has PD, but the personwith PD is in total denial and
doesn't want to acknowledge it.
Right, yes, and they think noone knows and they think that
(06:27):
they're not that different, butthey're kind of moving in slow
motion and no one notices it,right?
Speaker 1 (06:39):
Right, I will just sit here in my corner and y'all
won't be able to tell that Ihave had an episode.
Speaker 2 (06:59):
Right, that's exactly right.
And I think that makes itfrustrating for us as care
partners, because we want to beable to support the person.
And how do you do that whenthey won't even acknowledge that
what they're experiencing is PD, the fatigue, the lack of sleep
(07:24):
.
The fatigue, the lack of sleep,the difficulty eating and
swallowing, I mean, I thinkthere's so many components to
this and we have to be there forthe care partner.
And I do want to say there's alot of groups for care partners.
There are a lot of supportgroups, and if you can reach out
(07:48):
to others, if you have friendsthat are close friends, they may
not understand what you'regoing through as a partner to
someone with PD.
Speaker 1 (07:59):
Right, but someone who is also a partner to someone
with PD, they will get it.
When you talk about how hard itis to help someone put on their
(08:25):
socks?
Speaker 2 (08:27):
Yes, absolutely.
I just heard that there's areally cool new device that they
use for helping you get yoursocks on.
I've seen a couple things thatyou sort of you snap on the top
and you pull up, but this soundslike it may be more mechanical
and can really be good.
I'm going to look into itbecause it sounded kind of cool.
(08:47):
I just haven't seen it inaction yet, but I'm going to do
a little investigation on that.
So if there's anyone out therethat's using it, please write in
and let us know how it worksfor you, because I think it
could be very helpful.
Speaker 1 (09:01):
Yes.
Speaker 2 (09:04):
And I think the fact that there's a lot of research
going on now and a lot ofwonderful clinical trials.
I think that some of them youcan encourage your partner to go
and sign up for these things.
But you can't take them there.
I mean, you can't push someoneto do something they don't want
(09:25):
to do.
I sort of look at it.
It's much like someone gettingsober.
You know, when someone has anaddiction issue, you can't make
them get sober.
They have to want to get sober.
And with PD it's the same thing.
If someone is in denial, it'svery hard to get them to see
(09:50):
that other people can see it.
They know that something iswrong and oftentimes they think
maybe you're using drugs oryou're drunk.
They don't know what's going on, but they know something is off
and that part, I think for thecare partner, becomes a loaded
cannon.
How do you approach it?
Speaker 1 (10:12):
Right.
Speaker 2 (10:14):
You know.
So how do you approach it?
So my thing that I did at onepoint when we started to sort of
I call it the takeaway.
You know, when we kind ofdiscuss with Sandy, okay, this
is probably not a safe thing foryou to be doing, like taking a
shower or bathing, getting inthe bathtub when I was not home,
(10:37):
not safe and what I would do is, you know, he would say, well,
I think I'm doing really great,and I would say, yes, you are
doing really great, but I don'tknow if you realize really the
way you're moving these days,and so I would shoot a video and
then he'd always be surprisedof what he looked like.
(11:00):
You know, because you don'tfeel it sometimes it's just like
me.
I don't think of myself as beingmy actual chronological age.
I'm somewhere stuck between.
I don't know.
My friend says I've graduatedto 21 instead of 17, but I'm
somewhere stuck between.
I don't know.
My friend says I've graduatedto 21 instead of 17, but I'm
somewhere a lot younger than Iam in my mind and I don't feel
(11:23):
that different.
I see myself doing things andI'm going, oh, I can do this,
but in reality I probably shouldnot be doing it.
Let's put it this way, and Ithink for the person with
Parkinson's and it certainly wasfor Sandy it took him a while
to acknowledge that it justwasn't safe for him to bathe by
(11:43):
himself or take showers byhimself.
And for some folks they live bythemselves and they don't have
an in-house care partner orsomeone, a live-in, a life
partner.
And then what choice do youhave?
You have to bathe by yourselfand you have to cook and do the
things that a normal personwould do, but you have to find
(12:05):
safe ways to do it.
Speaker 1 (12:08):
Right.
Speaker 2 (12:09):
And that's always my takeaway for everything is what
is safe for you, what is safe inyour house, how are you able to
live independently and be safealong the way?
Speaker 1 (12:23):
Yes, but that also comes down to your risk
tolerance.
Yes, I personally have noproblem chopping vegetables.
(12:46):
Right, my see that knife hassomething to take off a finger
with.
Speaker 2 (13:01):
Yes, but sometimes you can do it safely, like you
probably have a system that youuse, obviously, yes, and so if
(13:38):
you can do it I mean, in ourhouse Sandy was really the cook
for many, many years.
I didn't cook that much untilmuch later to come to grips with
it together, like we sort oftalked about it and decided that
maybe this isn't in your bestinterest to do this, to cook
this way.
Like, I think, when he got somecognitive decline, when he got
some cognitive decline, that'swhen I said nothing with fire.
Does that make sense?
You know, it was like try notto use the stove or the oven
(14:07):
because I know I would come homefrom work and I could smell
that something got burnt and I'mgoing.
Did you almost set the house onfire with the toaster oven?
Because it's an easy thing todo?
I could do it in a minute, it'snot hard to do.
So I think we have to look atwhat are the things that you can
do safely and effectively.
And if you're someone that isuncomfortable watching the
(14:29):
person in your life with PDchopping vegetables, then I say
go into another room, right,right, don't look.
Don't look, yeah, don't look.
There's certain times you justhave to turn away and hold your
breath.
It's not easy to do that, butit is one approach.
(14:52):
You know and and I'm sure I wasfar from the perfect.
I know I was far from theperfect care partner.
Believe me, I was not notperfect in what I did with my
skill level but I know thatthere were certain things I just
had to give into and and I hadto be willing to allow him the
(15:13):
freedom to do what he felt hewas comfortable doing and I
think he was pretty good about.
When he got to the place wherehe just didn't feel comfortable
doing it, he stopped doing it.
You know, like driving, forsure, when his doctor said you
should stop driving, he juststopped driving, like the next
day.
We've talked about that before.
(15:35):
For a lot of people it takes amuch longer time, right, and
that's a big issue, because thatis a sign of independence being
able to drive yourself places,yes, but between Lyft and Uber
and now Waymo, the driverlesscars that make me nervous when
(15:57):
I'm driving next to them orbehind them I think there's a
lot of options for people thatdon't drive any longer and there
isn't the stigma that oh youcan't drive yourself.
I think that's part of it too.
You don't have that stigma.
Speaker 1 (16:14):
Yes, there's been a lot of changes socially and
culturally, at least here in theSouthland, absolutely.
Speaker 2 (16:32):
I mean more young people don't want to drive and
they're willing to take Uberplaces, and I read an article
that Waymo is very busy in theBay Area taking kids to school
because parents are both working.
They can't ride in an Uber or aLyft, but this doesn't have a
driver and people are willing toput their kids in this
(16:55):
driverless car, which thethought of that to me is out of
the question.
But I get it.
I understand what they're doingwith that.
It just would not be me, but Idon't think I've evolved at that
level yet to do it.
I don't want to put anyone in adriverless car, even though I
think the safety rate is prettygood.
(17:18):
I don't hear a lot of complaintsabout it, right, so you know, I
think taking time as a carepartner to also look at what
your needs might be, and I thinkthis is something that we
overlook.
Like, I know, when you have newmoms and everybody said, oh,
(17:40):
don't forget to take time foryourself, and they're going like
when am I supposed to do that?
I can barely go to the bathroomto go pee.
That's almost impossible, and Isometimes feel that when you
are certainly with people thatare more advanced stages that
are not so independent.
That is very much the case that.
(18:03):
Do they have time to really goto a support group?
Do they have time to call afriend and say, hey, I feel like
I'm drowning here?
Do they have time to call afriend and say, hey, I feel like
I'm drowning here?
Do they have time to kind ofhit that reality button of I'm
concerned, my loved one, I seethem losing ground.
(18:24):
I can't really do anything tohelp with that other than just
to be here and watch it, andthat becomes extremely
depressing and difficult thanjust to be here and watch it and
that becomes extremelydepressing and difficult.
Speaker 1 (18:39):
But I also have to recognize that if I'm feeling
totally overwhelmed anddepressed with it, I need to
reach out to someone to help meand give me a hand with it.
Speaker 2 (19:09):
There's an old adage in the climbing community that
you can't help someone if youyourself are incapable or
incapacitated.
I think that's true.
So I think, understanding yourposition as the care partner,
understanding the person withParkinson's, how difficult it is
for them as well, and that youcome together, and I think it's
all about communication Travis.
Speaker 1 (19:33):
Like I know, you and Sarah talk about a lot of stuff
that's uncomfortable yes, we do,but I've had to occasionally
remind her that, as difficult Ifuncle as it may be for her,
(19:55):
it's no picnic for me either.
Speaker 2 (20:01):
Right, that's right, and that doesn't really make her
feel any better, but it justmakes her remind herself.
You know that the two of youare doing this together and I
think that's the point we wantto get across here.
Right Is that even if you liveby yourself, even if you are the
(20:21):
person with PD and you don'tlive with someone, there is
community out here for you.
There are people with PD.
There's this podcast, there'swebinars, there's classes you
know PD exercise classes online.
There's so many options danceclasses, yoga, tai chi.
(20:43):
I mean, there's a millionthings that you can do to
connect with other people.
And we've talked about isolationbefore on earlier episodes,
about certainly coming off ofCOVID, how difficult it was for
people who felt like they wereon their own, by themselves.
But now we have no excuse.
(21:06):
We have to reach out.
And even though COVID seems tobe on an upswing in SoCal and
probably around the globe, Iwould think it's just this is
what we're living with now Ithink we still have to make a
point of getting out andreaching out and trying to be
there for each other.
Yeah, and that's my pointtonight, I think, is to let
(21:31):
people know that if you feelthat you're having difficulty
and you can't make it.
There's plenty of places forresources that you can look
online over 65 or over 60,there's lots of senior centers
(21:58):
in large cities and they havelots of services for families.
And I think where it's reallyhard is like yourself a young
onset person, right?
Yes?
Speaker 1 (22:06):
It is a bitch.
Speaker 2 (22:10):
Yeah, I mean, and I don't see things like you know,
when we talk about, I was saying, like AA, they have things like
allotine and they have thingsfor family members, but PD
doesn't have that.
We don't have groups forteenagers whose parents have PD
and how to cope with it.
And how do you deal with theemotions that you're already, as
(22:35):
a teenager, experiencing highsand lows and now you're dealing
with the fact that you see aparent that is struggling?
Yes, as I am reminded, everytime I visit family that doesn't
(23:06):
see me as often, I can watchtheir shock at my decline, and
that's not easy for any of us Iknow I've heard that many times
in support groups where peoplehave talked about that that that
(23:31):
feeling of, oh, now they seewhat I'm really like, and that
perception because we go into it, feeling we look pretty good,
right, like for you.
You're living with it every day,you know, and and we traveled
together, travis, when we wentto Barcelona last year and we,
you know, and I think, notunderstanding for someone that
(23:54):
does not see you regularly tosee the struggle that you go
through on a daily basis.
It's not easy to watch, but wehave to acknowledge that and
know that you're always going todo the best you can do, that
you're always going to do thebest you can do and as a care
(24:15):
partner, we can only do the bestwe can do what our bandwidth is
to be able to accommodate thischange in life.
My friend Nessa I'm going togive a shout out to my good
friend, nessa Wyman, who alwayssaid it's the new normal.
You know, when there's a changeshe used to say well, I guess
this is the new normal and Iwould remind myself of that that
.
You know, maybe it was reallygreat.
(24:37):
For four years we didn't seemuch of anything, no difference
and now, all of a sudden,there's a big shift, right?
Speaker 1 (24:46):
And that might shift back in a day or a week or a
year Exactly, or it might not.
Speaker 2 (24:59):
And so now we have to face that reality.
What is the new normal?
You know what is my new normalas a care partner?
What am I able to handle, whatam I willing to do partner, what
am I able to handle, what am Iwilling to do?
And I think when you get to aplace where and this is
something that I think is animportant point now if you get
(25:20):
to the place where you feel thatyou are not able to handle it,
there is nothing wrong, there isno shame, there's no brownie
points taken away from you.
If you bring in a paid caregiver, the only thing that that is is
it costs you a lot of money.
It has its downside.
It's financially very difficultand I would say for some
(25:43):
families it is a burden to thefamily to have to bring a care
partner in a caregiver, a paidcaregiver.
But I think it makes itdifficult.
But it is sometimes what youhave to do.
You have to bite the bullet,and I certainly know people that
have had to use paid caregiversfor a short time and then
things get better again and theydon't have the caregiver
(26:06):
anymore.
And I think that's theencouraging part is we don't
know what we're looking at.
I was emailing back and forthwith someone who was saying you
know, parkinson's is just notfor the faint of heart.
It is a tough disease.
It is a hard one to have tocope with and to experience the
(26:30):
hard side of it, which is thatwe don't get to choose what
symptoms we're going to have.
No, we don't Right, and you cando all the right things.
You can exercise, you can eathealthy, you can take your meds,
you can do all the things thatmake you strong and better and
(26:52):
live your best life.
But there will be days andtimes when it's not going to
feel like this is the best thatyou can be, and so it's hard.
It's hard for you and, again,it's hard for the care partner
who's watching you experiencethis, and they just have to know
that.
You know you're always going todo the best that you can do
(27:16):
within the confines of yourabilities, both emotionally and
physically.
Yes, and those are the twoareas that you have to consider.
Speaker 1 (27:26):
Yes.
Speaker 2 (27:48):
Because I can have a rough day physically but
emotionally better off, and viceversa.
So I think it just depends onwhere you are with it and know
that every day is different.
Speaker 1 (28:01):
Every day is a challenge and you can get
through it.
Every day is also anopportunity to not let this
disease take you out.
Speaker 2 (28:16):
Yes, I agree with that, travis.
Your attitude, your perceptionof how you see yourself, the
strength that you bring to thetable, I mean that's inspiring
for people and people look atthat and they look up to you.
Because of that, because you'rewilling to do the hard things,
and you know how I feel aboutthis that I admire you for doing
(28:40):
this and being there for otherpeople to show them that it is a
challenge and it's a bitch andit's not fun.
And you know like you wouldmuch rather be out climbing and
taking photographs, but somedays you just can't do it.
So, you know, for those of youthat are listening, we know
(29:02):
we're with you, we're here foryou and, um, and if you need
resources, check in with us.
You know we, we know a lot ofwhat's going on around the
country and we get notices aboutthings happening around the
world sometimes.
So just check in and see andlet's look at how we bring the
Parkinson's community togetherto make it stronger and more
(29:27):
effective, because I think thepower of unity, of people being
close to each other and sharingand experiencing this, can make
it a lot easier to deal with.
Speaker 1 (29:40):
Yes, 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.
Welcome to the I'm Not Dead Yetpodcast.
(00:21):
I'm your co-host, TravisRobinson.
I was diagnosed withParkinson's disease at age 35 in
2014.
Speaker 2 (00:46):
And I'm your other co-host.
I'm Judy Yarris.
My husband, Sandy, hadParkinson's disease for 18 years
.
I was his care partner.
Today's episode will be talkingabout care partners.
This is one of my favoritetopics and one that a lot of
(01:06):
people don't consider.
You know, we talk aboutParkinson's and we're always
thinking about the person thathas PD, but in reality, the
family has PD, yes, and I thinkthat's really important, and the
care partner can be anyone.
It doesn't have to be a familymember, it doesn't have to be a
(01:30):
spouse or a child or a parent.
It can be a friend and a goodfriend that is there for you,
and so I think it's important tosay to the care partner that
you're not alone.
It's a very thankless job.
I just want to say that.
Speaker 1 (01:49):
Yes, there are 90,000 new cases of PD diagnosed every
year, so you are very much notalone.
Speaker 2 (02:11):
That's right, and that number has really gone up
from a few years ago.
It used to be 60,000.
So it's really skyrocketed andmore happening.
I mean I think in someinstances skyrocketed and more
happening.
I mean I think in someinstances I've heard doctors say
that it's a pandemic ofParkinson's that's occurring and
people always say, well, whyare there so many cases?
(02:33):
And I always say there's somany different factors.
It can be environmental, it canbe injury, it can be, and they
don't know where it starts.
I mean, there's a lot of thingsthat happen with it.
I just heard about another NFLplayer that's been diagnosed
with Parkinson's.
Maybe I'm wrong, I think it wasthe Bears, but maybe he's on
(02:54):
another team now, but anyway.
So I think that what happens isthat we're hearing more and more
about it, and I guess that's myquestion hearing more and more
about it, and I guess that's myquestion.
My question is in underservedareas, the areas where we don't
hear from people, how many morepeople with PD are there that
(03:15):
don't go to the doctor, thatfeel there's a stigma?
If you shake or if you have alittle bit of a tremor or if you
are falling over, you havethese falls and you just don't
want to admit that you've gotsomething going on.
So there's definitely anunderserved population that
we're not even counting Right.
And so I think you know to kindof talk today a little bit
(03:42):
about really like what is therole of the care partner.
I know you and I have discussedthis on different levels,
travis, because when someone isnewly diagnosed, I think family
members immediately freak out,just like the person that was
diagnosed freaks out.
Yeah, that's fair and I don'tthink anyone ever talks about it
(04:05):
.
You know they talk about theperson that's having to deal
with it, but what about thepeople that are in the family?
And I think for this thanklessjob of hanging in there with
someone with PD and it's notthat the person with the people
with Parkinson's aren't grateful?
I just want to say that I knowthat Sandy was totally grateful
(04:30):
and he did thank me, but I alsoknow there were times when I
felt like you know you can thankme for this.
You know I'm not doing it toget the thank you because I love
you and you're my partner.
But there's a certain level ofit that I think people with PD
forget to thank the person thatthey're living with for putting
(04:54):
up with some of the shit thatthey do.
And I know you're guilty ofthis because you like to do
stuff that scares people.
So I say that all the time.
It always scares me.
So I think kudos to Sarah, whois understanding and is there
(05:16):
with you by your side.
But I want to let our listenersknow that it's not an easy road
, the feelings that you have ofthis mixed emotion of I love
them, I want to help them, butyou're sort of a helpless person
in this journey.
(05:36):
You can support them in the waythat they would like to be
supported, but you cannot makethem do anything really and
truly.
Speaker 1 (05:50):
Right and it takes a lot to be able to recognize that
, yes, I think.
Speaker 2 (06:03):
And there's a lot of cases where the partner, the
care partner, acknowledges itand accepts it and says, oh, my
partner has PD, but the personwith PD is in total denial and
doesn't want to acknowledge it.
Right, yes, and they think noone knows and they think that
(06:27):
they're not that different, butthey're kind of moving in slow
motion and no one notices it,right?
Speaker 1 (06:39):
Right, I will just sit here in my corner and y'all
won't be able to tell that Ihave had an episode.
Speaker 2 (06:59):
Right, that's exactly right.
And I think that makes itfrustrating for us as care
partners, because we want to beable to support the person.
And how do you do that whenthey won't even acknowledge that
what they're experiencing is PD, the fatigue, the lack of sleep
(07:24):
.
The fatigue, the lack of sleep,the difficulty eating and
swallowing, I mean, I thinkthere's so many components to
this and we have to be there forthe care partner.
And I do want to say there's alot of groups for care partners.
There are a lot of supportgroups, and if you can reach out
(07:48):
to others, if you have friendsthat are close friends, they may
not understand what you'regoing through as a partner to
someone with PD.
Speaker 1 (07:59):
Right, but someone who is also a partner to someone
with PD, they will get it.
When you talk about how hard itis to help someone put on their
(08:25):
socks?
Speaker 2 (08:27):
Yes, absolutely.
I just heard that there's areally cool new device that they
use for helping you get yoursocks on.
I've seen a couple things thatyou sort of you snap on the top
and you pull up, but this soundslike it may be more mechanical
and can really be good.
I'm going to look into itbecause it sounded kind of cool.
(08:47):
I just haven't seen it inaction yet, but I'm going to do
a little investigation on that.
So if there's anyone out therethat's using it, please write in
and let us know how it worksfor you, because I think it
could be very helpful.
Speaker 1 (09:01):
Yes.
Speaker 2 (09:04):
And I think the fact that there's a lot of research
going on now and a lot ofwonderful clinical trials.
I think that some of them youcan encourage your partner to go
and sign up for these things.
But you can't take them there.
I mean, you can't push someoneto do something they don't want
(09:25):
to do.
I sort of look at it.
It's much like someone gettingsober.
You know, when someone has anaddiction issue, you can't make
them get sober.
They have to want to get sober.
And with PD it's the same thing.
If someone is in denial, it'svery hard to get them to see
(09:50):
that other people can see it.
They know that something iswrong and oftentimes they think
maybe you're using drugs oryou're drunk.
They don't know what's going on, but they know something is off
and that part, I think for thecare partner, becomes a loaded
cannon.
How do you approach it?
Speaker 1 (10:12):
Right.
Speaker 2 (10:14):
You know.
So how do you approach it?
So my thing that I did at onepoint when we started to sort of
I call it the takeaway.
You know, when we kind ofdiscuss with Sandy, okay, this
is probably not a safe thing foryou to be doing, like taking a
shower or bathing, getting inthe bathtub when I was not home,
(10:37):
not safe and what I would do is, you know, he would say, well,
I think I'm doing really great,and I would say, yes, you are
doing really great, but I don'tknow if you realize really the
way you're moving these days,and so I would shoot a video and
then he'd always be surprisedof what he looked like.
(11:00):
You know, because you don'tfeel it sometimes it's just like
me.
I don't think of myself as beingmy actual chronological age.
I'm somewhere stuck between.
I don't know.
My friend says I've graduatedto 21 instead of 17, but I'm
somewhere stuck between.
I don't know.
My friend says I've graduatedto 21 instead of 17, but I'm
somewhere a lot younger than Iam in my mind and I don't feel
(11:23):
that different.
I see myself doing things andI'm going, oh, I can do this,
but in reality I probably shouldnot be doing it.
Let's put it this way, and Ithink for the person with
Parkinson's and it certainly wasfor Sandy it took him a while
to acknowledge that it justwasn't safe for him to bathe by
(11:43):
himself or take showers byhimself.
And for some folks they live bythemselves and they don't have
an in-house care partner orsomeone, a live-in, a life
partner.
And then what choice do youhave?
You have to bathe by yourselfand you have to cook and do the
things that a normal personwould do, but you have to find
(12:05):
safe ways to do it.
Speaker 1 (12:08):
Right.
Speaker 2 (12:09):
And that's always my takeaway for everything is what
is safe for you, what is safe inyour house, how are you able to
live independently and be safealong the way?
Speaker 1 (12:23):
Yes, but that also comes down to your risk
tolerance.
Yes, I personally have noproblem chopping vegetables.
(12:46):
Right, my see that knife hassomething to take off a finger
with.
Speaker 2 (13:01):
Yes, but sometimes you can do it safely, like you
probably have a system that youuse, obviously, yes, and so if
(13:38):
you can do it I mean, in ourhouse Sandy was really the cook
for many, many years.
I didn't cook that much untilmuch later to come to grips with
it together, like we sort oftalked about it and decided that
maybe this isn't in your bestinterest to do this, to cook
this way.
Like, I think, when he got somecognitive decline, when he got
some cognitive decline, that'swhen I said nothing with fire.
Does that make sense?
You know, it was like try notto use the stove or the oven
(14:07):
because I know I would come homefrom work and I could smell
that something got burnt and I'mgoing.
Did you almost set the house onfire with the toaster oven?
Because it's an easy thing todo?
I could do it in a minute, it'snot hard to do.
So I think we have to look atwhat are the things that you can
do safely and effectively.
And if you're someone that isuncomfortable watching the
(14:29):
person in your life with PDchopping vegetables, then I say
go into another room, right,right, don't look.
Don't look, yeah, don't look.
There's certain times you justhave to turn away and hold your
breath.
It's not easy to do that, butit is one approach.
(14:52):
You know and and I'm sure I wasfar from the perfect.
I know I was far from theperfect care partner.
Believe me, I was not notperfect in what I did with my
skill level but I know thatthere were certain things I just
had to give into and and I hadto be willing to allow him the
(15:13):
freedom to do what he felt hewas comfortable doing and I
think he was pretty good about.
When he got to the place wherehe just didn't feel comfortable
doing it, he stopped doing it.
You know, like driving, forsure, when his doctor said you
should stop driving, he juststopped driving, like the next
day.
We've talked about that before.
(15:35):
For a lot of people it takes amuch longer time, right, and
that's a big issue, because thatis a sign of independence being
able to drive yourself places,yes, but between Lyft and Uber
and now Waymo, the driverlesscars that make me nervous when
(15:57):
I'm driving next to them orbehind them I think there's a
lot of options for people thatdon't drive any longer and there
isn't the stigma that oh youcan't drive yourself.
I think that's part of it too.
You don't have that stigma.
Speaker 1 (16:14):
Yes, there's been a lot of changes socially and
culturally, at least here in theSouthland, absolutely.
Speaker 2 (16:32):
I mean more young people don't want to drive and
they're willing to take Uberplaces, and I read an article
that Waymo is very busy in theBay Area taking kids to school
because parents are both working.
They can't ride in an Uber or aLyft, but this doesn't have a
driver and people are willing toput their kids in this
(16:55):
driverless car, which thethought of that to me is out of
the question.
But I get it.
I understand what they're doingwith that.
It just would not be me, but Idon't think I've evolved at that
level yet to do it.
I don't want to put anyone in adriverless car, even though I
think the safety rate is prettygood.
(17:18):
I don't hear a lot of complaintsabout it, right, so you know, I
think taking time as a carepartner to also look at what
your needs might be, and I thinkthis is something that we
overlook.
Like, I know, when you have newmoms and everybody said, oh,
(17:40):
don't forget to take time foryourself, and they're going like
when am I supposed to do that?
I can barely go to the bathroomto go pee.
That's almost impossible, and Isometimes feel that when you
are certainly with people thatare more advanced stages that
are not so independent.
That is very much the case that.
(18:03):
Do they have time to really goto a support group?
Do they have time to call afriend and say, hey, I feel like
I'm drowning here?
Do they have time to call afriend and say, hey, I feel like
I'm drowning here?
Do they have time to kind ofhit that reality button of I'm
concerned, my loved one, I seethem losing ground.
(18:24):
I can't really do anything tohelp with that other than just
to be here and watch it, andthat becomes extremely
depressing and difficult thanjust to be here and watch it and
that becomes extremelydepressing and difficult.
Speaker 1 (18:39):
But I also have to recognize that if I'm feeling
totally overwhelmed anddepressed with it, I need to
reach out to someone to help meand give me a hand with it.
Speaker 2 (19:09):
There's an old adage in the climbing community that
you can't help someone if youyourself are incapable or
incapacitated.
I think that's true.
So I think, understanding yourposition as the care partner,
understanding the person withParkinson's, how difficult it is
for them as well, and that youcome together, and I think it's
all about communication Travis.
Speaker 1 (19:33):
Like I know, you and Sarah talk about a lot of stuff
that's uncomfortable yes, we do,but I've had to occasionally
remind her that, as difficult Ifuncle as it may be for her,
(19:55):
it's no picnic for me either.
Speaker 2 (20:01):
Right, that's right, and that doesn't really make her
feel any better, but it justmakes her remind herself.
You know that the two of youare doing this together and I
think that's the point we wantto get across here.
Right Is that even if you liveby yourself, even if you are the
(20:21):
person with PD and you don'tlive with someone, there is
community out here for you.
There are people with PD.
There's this podcast, there'swebinars, there's classes you
know PD exercise classes online.
There's so many options danceclasses, yoga, tai chi.
(20:43):
I mean, there's a millionthings that you can do to
connect with other people.
And we've talked about isolationbefore on earlier episodes,
about certainly coming off ofCOVID, how difficult it was for
people who felt like they wereon their own, by themselves.
But now we have no excuse.
(21:06):
We have to reach out.
And even though COVID seems tobe on an upswing in SoCal and
probably around the globe, Iwould think it's just this is
what we're living with now Ithink we still have to make a
point of getting out andreaching out and trying to be
there for each other.
Yeah, and that's my pointtonight, I think, is to let
(21:31):
people know that if you feelthat you're having difficulty
and you can't make it.
There's plenty of places forresources that you can look
online over 65 or over 60,there's lots of senior centers
(21:58):
in large cities and they havelots of services for families.
And I think where it's reallyhard is like yourself a young
onset person, right?
Yes?
Speaker 1 (22:06):
It is a bitch.
Speaker 2 (22:10):
Yeah, I mean, and I don't see things like you know,
when we talk about, I was saying, like AA, they have things like
allotine and they have thingsfor family members, but PD
doesn't have that.
We don't have groups forteenagers whose parents have PD
and how to cope with it.
And how do you deal with theemotions that you're already, as
(22:35):
a teenager, experiencing highsand lows and now you're dealing
with the fact that you see aparent that is struggling?
Yes, as I am reminded, everytime I visit family that doesn't
(23:06):
see me as often, I can watchtheir shock at my decline, and
that's not easy for any of us Iknow I've heard that many times
in support groups where peoplehave talked about that that that
(23:31):
feeling of, oh, now they seewhat I'm really like, and that
perception because we go into it, feeling we look pretty good,
right, like for you.
You're living with it every day,you know, and and we traveled
together, travis, when we wentto Barcelona last year and we,
you know, and I think, notunderstanding for someone that
(23:54):
does not see you regularly tosee the struggle that you go
through on a daily basis.
It's not easy to watch, but wehave to acknowledge that and
know that you're always going todo the best you can do, that
you're always going to do thebest you can do and as a care
(24:15):
partner, we can only do the bestwe can do what our bandwidth is
to be able to accommodate thischange in life.
My friend Nessa I'm going togive a shout out to my good
friend, nessa Wyman, who alwayssaid it's the new normal.
You know, when there's a changeshe used to say well, I guess
this is the new normal and Iwould remind myself of that that
.
You know, maybe it was reallygreat.
(24:37):
For four years we didn't seemuch of anything, no difference
and now, all of a sudden,there's a big shift, right?
Speaker 1 (24:46):
And that might shift back in a day or a week or a
year Exactly, or it might not.
Speaker 2 (24:59):
And so now we have to face that reality.
What is the new normal?
You know what is my new normalas a care partner?
What am I able to handle, whatam I willing to do partner, what
am I able to handle, what am Iwilling to do?
And I think when you get to aplace where and this is
something that I think is animportant point now if you get
(25:20):
to the place where you feel thatyou are not able to handle it,
there is nothing wrong, there isno shame, there's no brownie
points taken away from you.
If you bring in a paid caregiver, the only thing that that is is
it costs you a lot of money.
It has its downside.
It's financially very difficultand I would say for some
(25:43):
families it is a burden to thefamily to have to bring a care
partner in a caregiver, a paidcaregiver.
But I think it makes itdifficult.
But it is sometimes what youhave to do.
You have to bite the bullet,and I certainly know people that
have had to use paid caregiversfor a short time and then
things get better again and theydon't have the caregiver
(26:06):
anymore.
And I think that's theencouraging part is we don't
know what we're looking at.
I was emailing back and forthwith someone who was saying you
know, parkinson's is just notfor the faint of heart.
It is a tough disease.
It is a hard one to have tocope with and to experience the
(26:30):
hard side of it, which is thatwe don't get to choose what
symptoms we're going to have.
No, we don't Right, and you cando all the right things.
You can exercise, you can eathealthy, you can take your meds,
you can do all the things thatmake you strong and better and
(26:52):
live your best life.
But there will be days andtimes when it's not going to
feel like this is the best thatyou can be, and so it's hard.
It's hard for you and, again,it's hard for the care partner
who's watching you experiencethis, and they just have to know
that.
You know you're always going todo the best that you can do
(27:16):
within the confines of yourabilities, both emotionally and
physically.
Yes, and those are the twoareas that you have to consider.
Speaker 1 (27:26):
Yes.
Speaker 2 (27:48):
Because I can have a rough day physically but
emotionally better off, and viceversa.
So I think it just depends onwhere you are with it and know
that every day is different.
Speaker 1 (28:01):
Every day is a challenge and you can get
through it.
Every day is also anopportunity to not let this
disease take you out.
Speaker 2 (28:16):
Yes, I agree with that, travis.
Your attitude, your perceptionof how you see yourself, the
strength that you bring to thetable, I mean that's inspiring
for people and people look atthat and they look up to you.
Because of that, because you'rewilling to do the hard things,
and you know how I feel aboutthis that I admire you for doing
(28:40):
this and being there for otherpeople to show them that it is a
challenge and it's a bitch andit's not fun.
And you know like you wouldmuch rather be out climbing and
taking photographs, but somedays you just can't do it.
So, you know, for those of youthat are listening, we know
(29:02):
we're with you, we're here foryou and, um, and if you need
resources, check in with us.
You know we, we know a lot ofwhat's going on around the
country and we get notices aboutthings happening around the
world sometimes.
So just check in and see andlet's look at how we bring the
Parkinson's community togetherto make it stronger and more
(29:27):
effective, because I think thepower of unity, of people being
close to each other and sharingand experiencing this, can make
it a lot easier to deal with.
Speaker 1 (29:40):
Yes, and that's a wrap, bing.
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