October 15, 2024 • 26 mins
Welcome back Podcast Family!
This week we are sharing part three where some of those who were able to attend the Lewy Buddy Meet-Up in Caney Kansas on September 14, 2024 share how they felt meeting people they have only seen on zoom. For some, it was the first time they meet another person with Lewy Body Dementia in person. I know you will hear the Lewy Love shared by those who attended in Kansas. This needs to be in three parts because we recorded our first zoom meeting after the event and we wanted to give each person the opportunity to share how the meet-up made them feel- so very powerful!
Thank you all for your continued support and patience with us as we try really hard to get a new podcast done- hoping we get one a week but as you all know, Lewy and life sometimes get in the way. We know you all understand and support us anyway and for that we thank you!!! xoxo
Remember...We are doing this for all of us and we thank you from the bottom of our hearts.
Should you wish to bless us with your support for the podcast, you can use links below.
Copy and paste link, if needed
https://patreon.com/lewybodyrollercoasterpodcast
the GoFundMe page at
https://gofund.me/c416ecb65
Mark as Played
Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Speaker 1 (00:11):
welcome back podcast family yes, welcome back y'all
and, as always, we want to thankall of you who have been
patient with us as we do ourbest to get on an episode out
each week, um, but we knowsometimes louie and life get in
the way.
Our goal is to get caught upand ahead the best we can.
Speaker 2 (00:30):
Yes, and we always say that if it wasn't for all of
you all, we may have stoppedafter the first few episodes.
Because, to be quite honest,for the two of us who knew
nothing about doing a podcastand in all fairness, we still
don't, but we have helpers it isa lot of planning but worth all
of it if someone can learn fromwhat we share or how we feel
(00:52):
and they learn that they're notalone on this journey.
But we wanted to send a shoutout to andrew zapula this week
for all he does editing thepodcast for us each week.
Before start, I want to give ashout out to some of our
supporters.
This week we've got Fred Pounds, lana Badcock, pia Bedard,
(01:13):
michelle Austin, lisa Seaversand all you other good folks who
help keep us supported.
Thank you all.
Speaker 1 (01:22):
Okay, hello again.
Podcast family.
This is the final part three ofour Louie Buddy meetup series.
If you've listened to part oneand two, you heard some pretty
powerful answers people sharingwhat it was like to meet people
in person.
Sometimes there were a lot oftimes with this meetup that
(01:45):
people with Louie Body actuallygot to meet somebody else with
Louie Body for the first time inperson.
So I'm hoping you're gonna.
If you haven't heard the LouieLove from the last two episodes,
as we continue to go around theZoom meeting and have people
share, you'll consider joiningin on our Zoom one, one of our
(02:07):
Zoom meetings.
They're all posted at the top ofour pages and I think somebody
said it during one of thesemeetings that you can just come
and listen.
You can turn your camera on ifyou want.
You can keep your camera off ifyou want.
You can just say hello and justto meet everybody and see how
it's.
You can just say hello, just tomeet everybody and see how
(02:27):
it's—.
Many people say they're shy atfirst and then, once they feel
the love everybody has and theway we are with each other in
the Zoom meetings, that itdoesn't take long for somebody
who had their camera off to turnit on and just become part of
our on-screen family.
But we hope sharing these threeepisodes we had to break it up
(02:51):
into three because our meetingsare an hour and a half long, but
hopefully you can hear howpowerful it is to meet with
people caregiver to caregiver,caregiver, hearing from other
Lewy Body people or those withLewy Body talking to other
people with Lewy Body.
Speaker 5 (03:09):
This is our last episode of part three of our
Lewy Body meetup series, solisten and enjoy it was a big
(03:31):
mess at the gate I was leavingfrom, but I have to say, to take
that negative away, all thestaff that wheelchaired me
through till that gate.
They were amazing and lovingand funny.
Funny I mean, I just joked andlaughed.
Speaker 1 (03:47):
Well, if you're listening, for the first time
you can go to the guest servicescounter in an airport and
request a lanyard withsunflowers on it that you can
wear, and everyone should knowthat you have an invisible
(04:07):
disability, like they can't askyou what it is, and you should
get extra services meetingeveryone.
Speaker 5 (04:13):
I really say phenomenal love because, second
the second, I met everybody.
The second I you know, you knowTom and Dory and Megan, and
then I think the third person Imet, he was Tammy, and our
fourth person, whatever, andjust from there on, the people
(04:37):
didn't get better, but thefeelings and the emotions and,
and they just did like asnowball, it just got bigger and
bigger and bigger and, um meand I don't remember who it was
said oh me, and daisy said wewore makeup today, we weren't
gonna, but we're hoping it stopsit from crying, and it didn't
(05:02):
work, it didn't work, it didn'twork.
And so, yeah, it was laughing,crying, everything, everything.
Speaker 1 (05:13):
It's like our Zoom meetings.
Speaker 5 (05:15):
Yes, yes, only times 10.
Yeah, times 10, because you gotto touch and we did.
You know, I think it was onlyMatthew.
I knew not to grab and hug andthat's only because of my
grandson, and then he shook, butit was good that you could just
(05:36):
touch everyone and hug themmultiple times.
Speaker 1 (05:43):
And yeah, you really felt like I think I've done it
to Tom.
I'm like you are really real,I'm touching you, I'm touching
you and they didn't.
They didn't smack me back.
Tracy and Sam, you want to jumpin?
Just share how you felt.
Speaker 6 (06:01):
I better not because I'm already kind of weepy, but
it was beautiful.
Yes, every single one of youare beautiful, and I yeah.
Speaker 8 (06:17):
We're going to change your nickname from Sweet Tracy
to the Rainmaker.
That's great.
I got a question.
Who's Marilyn?
Speaker 1 (06:33):
She's probably just listening.
Hi, marilyn, good to see you.
Hi, marilyn, I want to say forthose listening, and if you
decide to join in one of theZoom meetings, you can just come
and listen until you feelcomfortable and you want to turn
on your camera.
Or you don't have to turn onyour camera because I'm telling
(06:59):
you I'm in my pajamas and nobodycares.
But we've had people that comeand say and they'll text listen,
I'm just having a rough day,I'm just going to listen.
So that's possible.
We do try to remember to askpeople you know to let you know
your camera's not on, becausesometimes you don't realize it.
Brad's coming in, he went.
We're just talking about theevent that we had this past
(07:22):
weekend and I'm going to postthe video that I made for it.
And then my daughter doesn'tknow this yet, but if everybody
posts pictures on the Keeney GetTogether Facebook page, if
you've not joined that and youwere there, you upload your
(07:42):
photos and things.
I'm going to get my daughter toput together pictures.
Speaker 4 (07:47):
You know, well, you know that picture, uh, uh, uh,
matthew Groschi, that was there,that uh anyway, uh, she, she
made sure and sent that picturehome with me.
Matthew and I used to talk twoor three times a day every day,
yeah.
Speaker 1 (08:06):
And Miriam.
I didn't see where she said ifany spouses are coming or loved
ones are coming and their Louisperson has passed to bring a
photo.
So her and Carol Obie broughtone and I didn't see that.
But that's a great idea for thenext one and it was even though
(08:28):
she lost her husband threeyears ago.
It was just very meaningful forpeople other caregivers to talk
to her and get advice from her.
And yeah, it was very sweet.
And, ray, there were plenty ofpotato chips.
I brought a box, carol broughta box.
Well, tammy said we had to havepotato chips.
(08:51):
It was just funny.
It was funny that you said thatin your video, because I'm like
we got plenty of potato chipshere.
So, hey, brad, brad was therealso.
So we're just going around andsharing what the experience
meant to people.
Speaker 4 (09:06):
Brad, it was good to finally meet you.
Speaker 9 (09:09):
It was nice to meet you all too.
It was a real special day.
I don't know how to describe it, but it really meant something
to me to get to meet you guysand spend some time with you.
And we got to hang out withSharon there at the house and
stuff and get to meet you guysand spend some time with you.
We got to hang out with Sharonthere at the house and stuff and
get to know her.
It was really neat.
Speaker 3 (09:31):
We laughed what?
Until about midnight?
Oh man, it was like I've knownthem forever.
Speaker 9 (09:41):
When she wasn't laughing at me, she was laughing
with me you want to tell themwhy we first started laughing?
Speaker 7 (09:50):
I don't know which one was bathroom thing.
Speaker 9 (09:52):
Oh yeah, ick poo, there was some crud on the
carpet, so it was time to drinkup.
Speaker 1 (09:59):
I made an announcement, like right after
the video, about people thatwere there that haven't joined
in on a Zoom, and I told themthat we, you know, we kind of
have a drinking game, and then Iexplained to them what that
meant.
Somebody always talks about poo, so people drink.
It's like my classroom ineighth grade they always talked
about poop too.
I don't know why.
Speaker 9 (10:19):
It was someone else's poo on the rug when we got
there, so yeah, Well, he wentinto the bathroom and all of a
sudden we hear wait.
Speaker 3 (10:30):
So that's the story you're going on and he comes out
with this little carpet rug rugand he's carrying it like this
to the washer and he washed it.
Speaker 1 (10:41):
This man knows how to use washer and dryer, all right
.
So the man knows how to use awasher and dryer, Alright.
So the two of you.
That's the story you'resticking with.
Speaker 3 (10:48):
It was somebody else's poo it was.
Speaker 9 (10:51):
We don't remember anything else.
Speaker 8 (10:54):
Sounds like a forgotten hallucination to me,
love you, marsha.
Speaker 1 (10:58):
Everybody say we'll see you next time.
Speaker 5 (11:00):
Marsha, thanks for jumping in.
Love you, marsha, we love you.
Speaker 1 (11:04):
Marsha, thanks for making that video it was amazing
my Marsha love you.
So again sorry those in thepodcast if you're listening to
this on the podcast, I hope youcan hear the love coming from
this group, like somebody justneeded to leave.
And you know we come inlaughing, we talk about things
(11:28):
we need to talk about.
We go out laughing.
You know that's to me is whatmakes this group so special is
and we can have our friendsstick to stories about someone
else's poop.
Speaker 8 (11:50):
It went beyond just the Louis people and the spouses
it came from Curry's extendedfamily to the work they did.
Speaker 1 (12:01):
They're just such wonderful people, Curry thank
you I mean I just you know,jesse, and randy and oh yeah and
linda and and the elusive and Igot to meet linda yeah, because
curry's linda is very privateand shy, but once you get to
(12:24):
know her she's you know you'refamily to her, and it was so
many people said.
I was so happy to meet Curry'sLinda and a couple of the people
that don't come into the Zoomthat were there were like we
thought we were married.
I'm like I would kill him.
He'd be dead by now, he'd begone, but it was.
I would kill him.
He'd be dead by now.
He'd be gone, but it was.
(12:46):
I know for one.
So many people came up and saidhow special it was to meet your
wife, the one person who keepsyou alive.
Thank you yeah.
Speaker 4 (12:57):
I think she's pretty special yeah.
Speaker 1 (13:01):
Even though she has a frying pan attached to her head
.
Speaker 4 (13:03):
Even though she's got the frying pan and the keys to
the box.
I don't know.
Speaker 1 (13:09):
She loved that.
She's like that's perfect.
Because your eyes are like oh,look at all those treats.
I know, right, like lock, lockkey.
That's not for you, buddy.
Speaker 4 (13:20):
I was planning on having a real sugar rush today,
but it ain't going to happen.
Speaker 1 (13:31):
No, yeah, sam, that's not for you, buddy.
Speaker 7 (13:32):
I was planning on having a real sugar rush today,
but it ain't gonna happen.
No, yeah, sam, you want to?
I didn't thank you, I was.
I'm sorry I cut you off.
Yeah, I didn't forget, it'sokay.
The the one word that justkeeps popping in my head as
we're going around sharing the.
The one word for me isunderstanding.
We understand where each otheris.
(13:54):
We understand what eachcaregiver goes through through.
We understand that the futureis unknown, but we're okay with
(14:15):
that.
It's it's.
It's a terrible place to be,but having this family right
here, that understands whatwe're going through, it's a
beautiful thing.
So to understand is beauty, torecognize the weakness that we
(14:35):
have, but together we are strong.
That's understanding, that'slove, and love in the nth degree
.
That's understanding.
That's love, love in the nthdegree.
I don't know how to.
(14:58):
The love in this group isindescribable those who are in
the family.
We accept each other's wordsand bones and we accept it
because we understand what itmeans.
And I'm just.
(15:19):
I was really blown awayyesterday.
My little son I was is Henry,and I'm not trying to gross
anybody out here, but I namedhim Henry after the baseball
(15:41):
super, mega ultra star, hankAaron, who played with the
Atlanta Braves in Milwaukee.
When they moved to Atlanta inmy childhood, hank Aaron had a
presence that was very special.
(16:02):
His influence in baseball stillgoes on and the reality of and
I think I shared this withseveral of y'all yesterday as
you're holding a snake for thevery first time in your life and
henry was being so gentle witheveryone.
(16:24):
There were a few nerves atfirst in the first moment, but
they just evaporated and therewas an acceptance there.
Henry is different.
Henry helps people thinkoutside the box and accepting
(16:49):
and the understanding's thatword again.
But um so, so henry is, is is mycomfort pen.
He had his first meal on theroad.
I wasn't sure how that would go, but he ate last night and he
(17:12):
ate just like he was at home,just like he didn't have to do
anything special.
It was just like he was homewherever he was.
Speaker 8 (17:24):
Was he at Brad's Airbnb?
Was he at Brad's Airbnb?
Speaker 1 (17:30):
Maybe that's it.
Oh, that's the Revisitor.
Yeah that's good.
Speaker 8 (17:36):
Dory wants to get me one of those snakes.
Speaker 3 (17:39):
I do, I do.
I felt the comfort snake thingwhen I was holding him.
I definitely could feel it.
Speaker 1 (17:45):
But it's just like what Sam was just describing is
there's Louis language and wespeak Louis language.
Those you know from the outsidedon't get it.
And we were all speaking justlike we do in the Zoom.
Like we, somebody sayssomething and we know what you
mean, Somebody knows what youmean or may experience the same
(18:06):
thing, and that's kind of whathappened there.
It was just a zoom meeting inperson.
Speaker 9 (18:13):
Um, there's an acceptance that I felt like he
was talking about that that you,you can just be yourself, you,
you, you can, you can say I havethis disease and you don't have
to feel like you're lesserbecause of it, because everyone
(18:33):
is an acceptance of it.
That's what you feel.
Speaker 3 (18:38):
Does it not make it worth having Louis?
Because you know, if we didn'tall have Louis, we wouldn't be
friends.
Yeah, it's only because we allunderstand each other, and
whether you have it or whetheryou're someone who's with
someone who has it, it doesn'tmatter.
Do you know what it is, lindalouis?
Speaker 1 (18:54):
love louis love that's that's our namey namey,
who's from ireland, who wasgonna make the trip, but she had
a family illness.
So, um, we had a spot for you.
We had a spot at the table forthe Louis Love.
Yeah, it's just-.
Next time for sure, next timefor sure, for sure.
And Brad, I mean it's funnybecause when I met Dee, who is a
(19:17):
spouse to me, she looked reallytall on Zoom.
And when I met her, she's liketwo inches tall, shorter than me
, and I'm like what.
And then when I met Brad, I waslike you're pretty tall,
because I'm only 5'4 andsomething, and I was like, oh, I
didn't think you were.
So it's funny how like youdon't realize how tall people
(19:39):
are on Zoom.
Speaker 9 (19:40):
When you put your legs on, it makes you a little
taller.
Speaker 1 (19:43):
Yeah, or shorter.
Speaker 9 (19:45):
Or shorter yeah.
Speaker 1 (19:47):
She was only five foot or something.
I'm like what you look, tallerfrom the waist up.
But it was nice your wife gotto come, Brad.
Speaker 9 (19:58):
Thank you, it was good for her.
It helps her understand a lotmore, I believe, because she
just was able to understand aconnection now.
It was good to meet her too.
Speaker 1 (20:11):
Yeah, I hope she.
You know, I don't know if shegoes to the Saturdays zoom
meeting, so maybe she will.
Speaker 9 (20:18):
Now that she's met, she's went once but she didn't
give it enough time to just getinvolved because it took me some
time to open up and start totalk and when you're not used to
being on zoom, but she doesbusiness on zoom with, so she's
used to doing it.
So, yeah, I think maybe youknow she did talk more about it,
(20:40):
so maybe she will.
You know, whatever I feel likewill help her, you know.
Yeah, go ahead, go ahead, no itjust you know, yeah, because go
ahead, go ahead.
No, it's just you know, our,our, our spouses are our care.
We became caregivers orcaretakers and so that it wasn't
(21:01):
something they were expectingto do.
But but you know, through theprocess she really became a good
caregiver and I appreciate thatin her, because I know that she
had to take on a different rolethan what she expected with me.
Speaker 1 (21:20):
Right, yeah, yeah.
And it's just as powerful as itwas the Louis people in the
group to meet face-to-face forcaregivers, to meet other
caregivers face-to-face and justsit and have that one-on-one
talk.
Speaker 3 (21:35):
I was going to say that, as far as a caregiver, it
meant so much to me to meeteverybody.
But when I saw sweet Tracy andDory and are there any other
caregivers on here, tracy andDory, and are there any other
(21:56):
carriers on here?
I bawled, because I know thatthey know what I'm going through
and all you that have Louiebody know what each other's
going through.
And I wasn't an outsider when Ifirst came on.
What I don't even know if it'sbeen a year or whatever.
I absolutely do not feel likean outsider.
And from the time I got upThursday morning I was so
(22:19):
excited.
And when I got there and I gotthose hugs and that love, it's
just, I can't even explain it.
You guys, it meant so much tosee you and hug you and touch
you and talk.
Oh my gosh, you're family.
You guys are better than someof my own family.
Speaker 1 (22:40):
I know we're the family we choose.
We choose to be.
And I'm just going to like,name me what you said.
I don't know if I said it toyou, tom, or not, but I was
chained into trash cans becauseI was getting the Airbnb ready,
you know, for us to leave thenext day.
Or maybe I was just standingthere by myself, I don't know,
but I I just got this.
(23:00):
This is going to make me cry.
Now I'm going to get through it, curry, this overwhelming
feeling and I said Louis sucks.
But oh my God, like I now knowall of you amazing people and
you're all in my life now and itwas just I don't know it, just
I don't know why it happenedwhile I was changing, changing
(23:22):
the trash, but I think I, Ithink I was alone and it was
quiet and you know, and it justkind of yeah.
So you know, I always say, likeZoom, people meeting on Zoom, I
think COVID, it became moreacceptable.
So that's a positive came outof COVID, but meeting you people
(23:43):
is definitely a positive comingout of this dreadful disease.
Speaker 8 (23:48):
And.
Speaker 1 (23:48):
Carla was there with us.
Speaker 8 (23:49):
Oh, yeah, carla, who there with?
Speaker 1 (23:50):
us.
Oh yeah, carla, she issweetheart.
Yeah, yeah, that was specialthat she flew out.
Yeah, it was just Louis.
Love, that's what it is, amy.
Speaker 5 (24:05):
And everyone is.
I mean, I'm still shocked bythis Is so much more beautiful,
beautiful and handsome in person.
Like that was one of the firstthings I noticed.
Like sorry, zoom, doesn't doyou guys justice, because you
guys are truly handsome andbeautiful.
I was just amazed, not thatthat would have made a
(24:27):
difference.
I'd have loved a deadly onejust as well.
Amazed, not that that wouldhave made a difference.
Speaker 1 (24:31):
I'd have loved an ugly one just as well.
I think we all showered and,like I said, I actually used a
brush on my hair for the event.
I'm like because so many peoplesaid that, oh my God, your hair
.
Speaker 6 (24:44):
I'm like, yeah, well, I don't have a reason to put it
down on Zoom, something Inoticed right away with Tom and
Dory when I got close to them,but they both have beautiful
blue eyes and that's somethingthat you do not see.
Yeah, yes, yes, this medium,yeah, so, if you don't know,
(25:08):
they both have beautiful blueeyes.
They do.
Speaker 1 (25:10):
And amazing hearts and souls.
So if you don't know, they bothhave beautiful blue eyes.
They do and amazing hearts andsouls, and Tasha and I had some
heart and hearts on the backporch.
I just want to say you two arein black and white today, tracy
and Sam.
Does anybody look like they'rein black and white today?
I think sepia.
Speaker 8 (25:26):
I was like is it me?
Speaker 1 (25:29):
It's no big deal, I'm just.
Oh, there you go.
Speaker 8 (25:31):
Yeah, that's better.
I thought they were learningprotective coloration from this
snake.
Speaker 6 (25:37):
We literally, honestly, we literally rolled
out of bed, put this table upand yeah, yeah, that's how we're
going to say it.
Speaker 1 (25:48):
I brushed my teeth for you people today.
So there's that.
That's all the time for thisweek podcast family.
So we hope that you enjoyedthese, this three-part series,
and we'll consider joining in onone of the zoom meetings in the
future thanks for listening.
welcome back podcast family yes, welcome back y'all
and, as always, we want to thankall of you who have been
patient with us as we do ourbest to get on an episode out
each week, um, but we knowsometimes louie and life get in
the way.
Our goal is to get caught upand ahead the best we can.
Speaker 2 (00:30):
Yes, and we always say that if it wasn't for all of
you all, we may have stoppedafter the first few episodes.
Because, to be quite honest,for the two of us who knew
nothing about doing a podcastand in all fairness, we still
don't, but we have helpers it isa lot of planning but worth all
of it if someone can learn fromwhat we share or how we feel
(00:52):
and they learn that they're notalone on this journey.
But we wanted to send a shoutout to andrew zapula this week
for all he does editing thepodcast for us each week.
Before start, I want to give ashout out to some of our
supporters.
This week we've got Fred Pounds, lana Badcock, pia Bedard,
(01:13):
michelle Austin, lisa Seaversand all you other good folks who
help keep us supported.
Thank you all.
Speaker 1 (01:22):
Okay, hello again.
Podcast family.
This is the final part three ofour Louie Buddy meetup series.
If you've listened to part oneand two, you heard some pretty
powerful answers people sharingwhat it was like to meet people
in person.
Sometimes there were a lot oftimes with this meetup that
(01:45):
people with Louie Body actuallygot to meet somebody else with
Louie Body for the first time inperson.
So I'm hoping you're gonna.
If you haven't heard the LouieLove from the last two episodes,
as we continue to go around theZoom meeting and have people
share, you'll consider joiningin on our Zoom one, one of our
(02:07):
Zoom meetings.
They're all posted at the top ofour pages and I think somebody
said it during one of thesemeetings that you can just come
and listen.
You can turn your camera on ifyou want.
You can keep your camera off ifyou want.
You can just say hello and justto meet everybody and see how
it's.
You can just say hello, just tomeet everybody and see how
(02:27):
it's—.
Many people say they're shy atfirst and then, once they feel
the love everybody has and theway we are with each other in
the Zoom meetings, that itdoesn't take long for somebody
who had their camera off to turnit on and just become part of
our on-screen family.
But we hope sharing these threeepisodes we had to break it up
(02:51):
into three because our meetingsare an hour and a half long, but
hopefully you can hear howpowerful it is to meet with
people caregiver to caregiver,caregiver, hearing from other
Lewy Body people or those withLewy Body talking to other
people with Lewy Body.
Speaker 5 (03:09):
This is our last episode of part three of our
Lewy Body meetup series, solisten and enjoy it was a big
(03:31):
mess at the gate I was leavingfrom, but I have to say, to take
that negative away, all thestaff that wheelchaired me
through till that gate.
They were amazing and lovingand funny.
Funny I mean, I just joked andlaughed.
Speaker 1 (03:47):
Well, if you're listening, for the first time
you can go to the guest servicescounter in an airport and
request a lanyard withsunflowers on it that you can
wear, and everyone should knowthat you have an invisible
(04:07):
disability, like they can't askyou what it is, and you should
get extra services meetingeveryone.
Speaker 5 (04:13):
I really say phenomenal love because, second
the second, I met everybody.
The second I you know, you knowTom and Dory and Megan, and
then I think the third person Imet, he was Tammy, and our
fourth person, whatever, andjust from there on, the people
(04:37):
didn't get better, but thefeelings and the emotions and,
and they just did like asnowball, it just got bigger and
bigger and bigger and, um meand I don't remember who it was
said oh me, and daisy said wewore makeup today, we weren't
gonna, but we're hoping it stopsit from crying, and it didn't
(05:02):
work, it didn't work, it didn'twork.
And so, yeah, it was laughing,crying, everything, everything.
Speaker 1 (05:13):
It's like our Zoom meetings.
Speaker 5 (05:15):
Yes, yes, only times 10.
Yeah, times 10, because you gotto touch and we did.
You know, I think it was onlyMatthew.
I knew not to grab and hug andthat's only because of my
grandson, and then he shook, butit was good that you could just
(05:36):
touch everyone and hug themmultiple times.
Speaker 1 (05:43):
And yeah, you really felt like I think I've done it
to Tom.
I'm like you are really real,I'm touching you, I'm touching
you and they didn't.
They didn't smack me back.
Tracy and Sam, you want to jumpin?
Just share how you felt.
Speaker 6 (06:01):
I better not because I'm already kind of weepy, but
it was beautiful.
Yes, every single one of youare beautiful, and I yeah.
Speaker 8 (06:17):
We're going to change your nickname from Sweet Tracy
to the Rainmaker.
That's great.
I got a question.
Who's Marilyn?
Speaker 1 (06:33):
She's probably just listening.
Hi, marilyn, good to see you.
Hi, marilyn, I want to say forthose listening, and if you
decide to join in one of theZoom meetings, you can just come
and listen until you feelcomfortable and you want to turn
on your camera.
Or you don't have to turn onyour camera because I'm telling
(06:59):
you I'm in my pajamas and nobodycares.
But we've had people that comeand say and they'll text listen,
I'm just having a rough day,I'm just going to listen.
So that's possible.
We do try to remember to askpeople you know to let you know
your camera's not on, becausesometimes you don't realize it.
Brad's coming in, he went.
We're just talking about theevent that we had this past
(07:22):
weekend and I'm going to postthe video that I made for it.
And then my daughter doesn'tknow this yet, but if everybody
posts pictures on the Keeney GetTogether Facebook page, if
you've not joined that and youwere there, you upload your
(07:42):
photos and things.
I'm going to get my daughter toput together pictures.
Speaker 4 (07:47):
You know, well, you know that picture, uh, uh, uh,
matthew Groschi, that was there,that uh anyway, uh, she, she
made sure and sent that picturehome with me.
Matthew and I used to talk twoor three times a day every day,
yeah.
Speaker 1 (08:06):
And Miriam.
I didn't see where she said ifany spouses are coming or loved
ones are coming and their Louisperson has passed to bring a
photo.
So her and Carol Obie broughtone and I didn't see that.
But that's a great idea for thenext one and it was even though
(08:28):
she lost her husband threeyears ago.
It was just very meaningful forpeople other caregivers to talk
to her and get advice from her.
And yeah, it was very sweet.
And, ray, there were plenty ofpotato chips.
I brought a box, carol broughta box.
Well, tammy said we had to havepotato chips.
(08:51):
It was just funny.
It was funny that you said thatin your video, because I'm like
we got plenty of potato chipshere.
So, hey, brad, brad was therealso.
So we're just going around andsharing what the experience
meant to people.
Speaker 4 (09:06):
Brad, it was good to finally meet you.
Speaker 9 (09:09):
It was nice to meet you all too.
It was a real special day.
I don't know how to describe it, but it really meant something
to me to get to meet you guysand spend some time with you.
And we got to hang out withSharon there at the house and
stuff and get to meet you guysand spend some time with you.
We got to hang out with Sharonthere at the house and stuff and
get to know her.
It was really neat.
Speaker 3 (09:31):
We laughed what?
Until about midnight?
Oh man, it was like I've knownthem forever.
Speaker 9 (09:41):
When she wasn't laughing at me, she was laughing
with me you want to tell themwhy we first started laughing?
Speaker 7 (09:50):
I don't know which one was bathroom thing.
Speaker 9 (09:52):
Oh yeah, ick poo, there was some crud on the
carpet, so it was time to drinkup.
Speaker 1 (09:59):
I made an announcement, like right after
the video, about people thatwere there that haven't joined
in on a Zoom, and I told themthat we, you know, we kind of
have a drinking game, and then Iexplained to them what that
meant.
Somebody always talks about poo, so people drink.
It's like my classroom ineighth grade they always talked
about poop too.
I don't know why.
Speaker 9 (10:19):
It was someone else's poo on the rug when we got
there, so yeah, Well, he wentinto the bathroom and all of a
sudden we hear wait.
Speaker 3 (10:30):
So that's the story you're going on and he comes out
with this little carpet rug rugand he's carrying it like this
to the washer and he washed it.
Speaker 1 (10:41):
This man knows how to use washer and dryer, all right
.
So the man knows how to use awasher and dryer, Alright.
So the two of you.
That's the story you'resticking with.
Speaker 3 (10:48):
It was somebody else's poo it was.
Speaker 9 (10:51):
We don't remember anything else.
Speaker 8 (10:54):
Sounds like a forgotten hallucination to me,
love you, marsha.
Speaker 1 (10:58):
Everybody say we'll see you next time.
Speaker 5 (11:00):
Marsha, thanks for jumping in.
Love you, marsha, we love you.
Speaker 1 (11:04):
Marsha, thanks for making that video it was amazing
my Marsha love you.
So again sorry those in thepodcast if you're listening to
this on the podcast, I hope youcan hear the love coming from
this group, like somebody justneeded to leave.
And you know we come inlaughing, we talk about things
(11:28):
we need to talk about.
We go out laughing.
You know that's to me is whatmakes this group so special is
and we can have our friendsstick to stories about someone
else's poop.
Speaker 8 (11:50):
It went beyond just the Louis people and the spouses
it came from Curry's extendedfamily to the work they did.
Speaker 1 (12:01):
They're just such wonderful people, Curry thank
you I mean I just you know,jesse, and randy and oh yeah and
linda and and the elusive and Igot to meet linda yeah, because
curry's linda is very privateand shy, but once you get to
(12:24):
know her she's you know you'refamily to her, and it was so
many people said.
I was so happy to meet Curry'sLinda and a couple of the people
that don't come into the Zoomthat were there were like we
thought we were married.
I'm like I would kill him.
He'd be dead by now, he'd begone, but it was.
I would kill him.
He'd be dead by now.
He'd be gone, but it was.
(12:46):
I know for one.
So many people came up and saidhow special it was to meet your
wife, the one person who keepsyou alive.
Thank you yeah.
Speaker 4 (12:57):
I think she's pretty special yeah.
Speaker 1 (13:01):
Even though she has a frying pan attached to her head
.
Speaker 4 (13:03):
Even though she's got the frying pan and the keys to
the box.
I don't know.
Speaker 1 (13:09):
She loved that.
She's like that's perfect.
Because your eyes are like oh,look at all those treats.
I know, right, like lock, lockkey.
That's not for you, buddy.
Speaker 4 (13:20):
I was planning on having a real sugar rush today,
but it ain't going to happen.
Speaker 1 (13:31):
No, yeah, sam, that's not for you, buddy.
Speaker 7 (13:32):
I was planning on having a real sugar rush today,
but it ain't gonna happen.
No, yeah, sam, you want to?
I didn't thank you, I was.
I'm sorry I cut you off.
Yeah, I didn't forget, it'sokay.
The the one word that justkeeps popping in my head as
we're going around sharing the.
The one word for me isunderstanding.
We understand where each otheris.
(13:54):
We understand what eachcaregiver goes through through.
We understand that the futureis unknown, but we're okay with
(14:15):
that.
It's it's.
It's a terrible place to be,but having this family right
here, that understands whatwe're going through, it's a
beautiful thing.
So to understand is beauty, torecognize the weakness that we
(14:35):
have, but together we are strong.
That's understanding, that'slove, and love in the nth degree
.
That's understanding.
That's love, love in the nthdegree.
I don't know how to.
(14:58):
The love in this group isindescribable those who are in
the family.
We accept each other's wordsand bones and we accept it
because we understand what itmeans.
And I'm just.
(15:19):
I was really blown awayyesterday.
My little son I was is Henry,and I'm not trying to gross
anybody out here, but I namedhim Henry after the baseball
(15:41):
super, mega ultra star, hankAaron, who played with the
Atlanta Braves in Milwaukee.
When they moved to Atlanta inmy childhood, hank Aaron had a
presence that was very special.
(16:02):
His influence in baseball stillgoes on and the reality of and
I think I shared this withseveral of y'all yesterday as
you're holding a snake for thevery first time in your life and
henry was being so gentle witheveryone.
(16:24):
There were a few nerves atfirst in the first moment, but
they just evaporated and therewas an acceptance there.
Henry is different.
Henry helps people thinkoutside the box and accepting
(16:49):
and the understanding's thatword again.
But um so, so henry is, is is mycomfort pen.
He had his first meal on theroad.
I wasn't sure how that would go, but he ate last night and he
(17:12):
ate just like he was at home,just like he didn't have to do
anything special.
It was just like he was homewherever he was.
Speaker 8 (17:24):
Was he at Brad's Airbnb?
Was he at Brad's Airbnb?
Speaker 1 (17:30):
Maybe that's it.
Oh, that's the Revisitor.
Yeah that's good.
Speaker 8 (17:36):
Dory wants to get me one of those snakes.
Speaker 3 (17:39):
I do, I do.
I felt the comfort snake thingwhen I was holding him.
I definitely could feel it.
Speaker 1 (17:45):
But it's just like what Sam was just describing is
there's Louis language and wespeak Louis language.
Those you know from the outsidedon't get it.
And we were all speaking justlike we do in the Zoom.
Like we, somebody sayssomething and we know what you
mean, Somebody knows what youmean or may experience the same
(18:06):
thing, and that's kind of whathappened there.
It was just a zoom meeting inperson.
Speaker 9 (18:13):
Um, there's an acceptance that I felt like he
was talking about that that you,you can just be yourself, you,
you, you can, you can say I havethis disease and you don't have
to feel like you're lesserbecause of it, because everyone
(18:33):
is an acceptance of it.
That's what you feel.
Speaker 3 (18:38):
Does it not make it worth having Louis?
Because you know, if we didn'tall have Louis, we wouldn't be
friends.
Yeah, it's only because we allunderstand each other, and
whether you have it or whetheryou're someone who's with
someone who has it, it doesn'tmatter.
Do you know what it is, lindalouis?
Speaker 1 (18:54):
love louis love that's that's our namey namey,
who's from ireland, who wasgonna make the trip, but she had
a family illness.
So, um, we had a spot for you.
We had a spot at the table forthe Louis Love.
Yeah, it's just-.
Next time for sure, next timefor sure, for sure.
And Brad, I mean it's funnybecause when I met Dee, who is a
(19:17):
spouse to me, she looked reallytall on Zoom.
And when I met her, she's liketwo inches tall, shorter than me
, and I'm like what.
And then when I met Brad, I waslike you're pretty tall,
because I'm only 5'4 andsomething, and I was like, oh, I
didn't think you were.
So it's funny how like youdon't realize how tall people
(19:39):
are on Zoom.
Speaker 9 (19:40):
When you put your legs on, it makes you a little
taller.
Speaker 1 (19:43):
Yeah, or shorter.
Speaker 9 (19:45):
Or shorter yeah.
Speaker 1 (19:47):
She was only five foot or something.
I'm like what you look, tallerfrom the waist up.
But it was nice your wife gotto come, Brad.
Speaker 9 (19:58):
Thank you, it was good for her.
It helps her understand a lotmore, I believe, because she
just was able to understand aconnection now.
It was good to meet her too.
Speaker 1 (20:11):
Yeah, I hope she.
You know, I don't know if shegoes to the Saturdays zoom
meeting, so maybe she will.
Speaker 9 (20:18):
Now that she's met, she's went once but she didn't
give it enough time to just getinvolved because it took me some
time to open up and start totalk and when you're not used to
being on zoom, but she doesbusiness on zoom with, so she's
used to doing it.
So, yeah, I think maybe youknow she did talk more about it,
(20:40):
so maybe she will.
You know, whatever I feel likewill help her, you know.
Yeah, go ahead, go ahead, no itjust you know, yeah, because go
ahead, go ahead.
No, it's just you know, our,our, our spouses are our care.
We became caregivers orcaretakers and so that it wasn't
(21:01):
something they were expectingto do.
But but you know, through theprocess she really became a good
caregiver and I appreciate thatin her, because I know that she
had to take on a different rolethan what she expected with me.
Speaker 1 (21:20):
Right, yeah, yeah.
And it's just as powerful as itwas the Louis people in the
group to meet face-to-face forcaregivers, to meet other
caregivers face-to-face and justsit and have that one-on-one
talk.
Speaker 3 (21:35):
I was going to say that, as far as a caregiver, it
meant so much to me to meeteverybody.
But when I saw sweet Tracy andDory and are there any other
caregivers on here, tracy andDory, and are there any other
(21:56):
carriers on here?
I bawled, because I know thatthey know what I'm going through
and all you that have Louiebody know what each other's
going through.
And I wasn't an outsider when Ifirst came on.
What I don't even know if it'sbeen a year or whatever.
I absolutely do not feel likean outsider.
And from the time I got upThursday morning I was so
(22:19):
excited.
And when I got there and I gotthose hugs and that love, it's
just, I can't even explain it.
You guys, it meant so much tosee you and hug you and touch
you and talk.
Oh my gosh, you're family.
You guys are better than someof my own family.
Speaker 1 (22:40):
I know we're the family we choose.
We choose to be.
And I'm just going to like,name me what you said.
I don't know if I said it toyou, tom, or not, but I was
chained into trash cans becauseI was getting the Airbnb ready,
you know, for us to leave thenext day.
Or maybe I was just standingthere by myself, I don't know,
but I I just got this.
(23:00):
This is going to make me cry.
Now I'm going to get through it, curry, this overwhelming
feeling and I said Louis sucks.
But oh my God, like I now knowall of you amazing people and
you're all in my life now and itwas just I don't know it, just
I don't know why it happenedwhile I was changing, changing
(23:22):
the trash, but I think I, Ithink I was alone and it was
quiet and you know, and it justkind of yeah.
So you know, I always say, likeZoom, people meeting on Zoom, I
think COVID, it became moreacceptable.
So that's a positive came outof COVID, but meeting you people
(23:43):
is definitely a positive comingout of this dreadful disease.
Speaker 8 (23:48):
And.
Speaker 1 (23:48):
Carla was there with us.
Speaker 8 (23:49):
Oh, yeah, carla, who there with?
Speaker 1 (23:50):
us.
Oh yeah, carla, she issweetheart.
Yeah, yeah, that was specialthat she flew out.
Yeah, it was just Louis.
Love, that's what it is, amy.
Speaker 5 (24:05):
And everyone is.
I mean, I'm still shocked bythis Is so much more beautiful,
beautiful and handsome in person.
Like that was one of the firstthings I noticed.
Like sorry, zoom, doesn't doyou guys justice, because you
guys are truly handsome andbeautiful.
I was just amazed, not thatthat would have made a
(24:27):
difference.
I'd have loved a deadly onejust as well.
Amazed, not that that wouldhave made a difference.
Speaker 1 (24:31):
I'd have loved an ugly one just as well.
I think we all showered and,like I said, I actually used a
brush on my hair for the event.
I'm like because so many peoplesaid that, oh my God, your hair
.
Speaker 6 (24:44):
I'm like, yeah, well, I don't have a reason to put it
down on Zoom, something Inoticed right away with Tom and
Dory when I got close to them,but they both have beautiful
blue eyes and that's somethingthat you do not see.
Yeah, yes, yes, this medium,yeah, so, if you don't know,
(25:08):
they both have beautiful blueeyes.
They do.
Speaker 1 (25:10):
And amazing hearts and souls.
So if you don't know, they bothhave beautiful blue eyes.
They do and amazing hearts andsouls, and Tasha and I had some
heart and hearts on the backporch.
I just want to say you two arein black and white today, tracy
and Sam.
Does anybody look like they'rein black and white today?
I think sepia.
Speaker 8 (25:26):
I was like is it me?
Speaker 1 (25:29):
It's no big deal, I'm just.
Oh, there you go.
Speaker 8 (25:31):
Yeah, that's better.
I thought they were learningprotective coloration from this
snake.
Speaker 6 (25:37):
We literally, honestly, we literally rolled
out of bed, put this table upand yeah, yeah, that's how we're
going to say it.
Speaker 1 (25:48):
I brushed my teeth for you people today.
So there's that.
That's all the time for thisweek podcast family.
So we hope that you enjoyedthese, this three-part series,
and we'll consider joining in onone of the zoom meetings in the
future thanks for listening.
Popular Podcasts
Cold Case Files: Miami
Joyce Sapp, 76; Bryan Herrera, 16; and Laurance Webb, 32—three Miami residents whose lives were stolen in brutal, unsolved homicides. Cold Case Files: Miami follows award‑winning radio host and City of Miami Police reserve officer Enrique Santos as he partners with the department’s Cold Case Homicide Unit, determined family members, and the advocates who spend their lives fighting for justice for the victims who can no longer fight for themselves.
24/7 News: The Latest
The latest news in 4 minutes updated every hour, every day.
Crime Junkie
Does hearing about a true crime case always leave you scouring the internet for the truth behind the story? Dive into your next mystery with Crime Junkie. Every Monday, join your host Ashley Flowers as she unravels all the details of infamous and underreported true crime cases with her best friend Brit Prawat. From cold cases to missing persons and heroes in our community who seek justice, Crime Junkie is your destination for theories and stories you won’t hear anywhere else. Whether you're a seasoned true crime enthusiast or new to the genre, you'll find yourself on the edge of your seat awaiting a new episode every Monday. If you can never get enough true crime... Congratulations, you’ve found your people. Follow to join a community of Crime Junkies! Crime Junkie is presented by audiochuck Media Company.