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October 8, 2024 16 mins

Welcome back Podcast Family!
This week we are sharing part two of 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. We pick up from last episode by sharing again what our friend Tom said about attending the event and meeting everyone- 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.
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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 (01:21):
Welcome back to part two of our Louie Buddy Meetup.
As members of the Zoom groupour Monday Zoom group who
actually attended this Saturdayprior to the meeting, the meetup
in Caney, kansas, all sharewhat it was like meeting the
people, some people that they'veonly seen on a screen, some

(01:43):
people up to three years you'vebeen talking to people on Zoom
and some people were able totravel to the meetup.
We had about 55 people, whichwas a perfect number, because I
think too many more might'vebeen too much.
So it was just a perfect,intimate experience where
everybody got to sit and chatand hopefully, as you hear from

(02:06):
everyone who's been sharing lastweek, this week and next week,
you will feel the Louis love asyou listen.
Enjoy part two.

Speaker 3 (02:22):
It was one of the most moving and beautiful things
that you didn't want to end andyou knew it had to.
And it was just, oh, just,meeting the people.
It was that was so surrealbecause it was a, it was a
feeling of meeting them and yet,and yet you already knew them.
You know it's hard to, it'shard to describe for me because
it was just.
It was like I already know you,I don't need to meet you, but I

(02:45):
get to hug you, I get to hugsharon, I get to hug, oh, you
know megan, and and and and andtracy and sam and carol and and
tammy and and, just, you knowlinda, everybody, and you know
it just.
And then we were lucky enoughto to transport, uh, uh, uh,
carol and megan.
So we got to talk.

(03:06):
Oh, I shouldn't say that, carol, you got to listen to me in the
back seat for I don't knowseveral hours, but you can say
at least we did spend timetogether.

Speaker 4 (03:21):
Yeah, but there's a lady between us, very, very
sweet Emmy.

Speaker 3 (03:29):
Oh, emmy, and we sat on the porch and we talked for
hours.
Yeah, that was nice, it wasreally nice, it was just.
Everything was nice, everythingwas beautiful.
The film was so indescribablymoving.
It was like people just sobbed.
I became totally and noexaggeration, I just became

(03:50):
totally incapacitated after thatfilm.
I just did.
It was that moving.
Thinking about it now almostmakes me weep.

Speaker 1 (03:59):
Yeah, now Tom and Dory watched it.
I just wanted to make sure itwasn't too long so I was like,
can you guys watch it?
So I showed it to them at theranch that we rented.
And Dory what did?
Because you already saw it, butyou shared with me what it was
like watching it with everybody.

Speaker 5 (04:18):
Yeah, we saw it and it was wonderful.
And then when I saw it in theroom with everybody, it was so
powerful.
I mean that room was justfilled with love and gratitude
and I think that's what made iteven so much more moving.
And of course, tipa just pushedit right over the edge at the

(04:39):
end.
It was just incredible and Imean I'm not one to stand and
sing and I'm very reserved andI'm like stand, sing, hug, cry.
I mean it was just unbelievable, it was very powerful.
Being in that room witheverybody really was.

Speaker 1 (05:01):
There's so much energy there yeah, you summed it
up perfectly.
It was just so much love inthat room and like Tom I think
Dory or Tom like the second daywe stayed together in the same
house.
He was like technically we're.
Somebody said, technicallywe're strangers, but here we are
just staying in this house likewe've known each other forever

(05:21):
and it felt it was like no bigdeal.
You know, you know these people.
And yeah, it was.
And Curry's daughter, Lorraine,was asked.
She kept coming over and she'slike another person said when
are we doing the next one?
We're but my car was so fullwith like all the, I stole

(05:43):
Sarah's decorations, just wentaround her little apartment.

(06:03):
I'm like I'm going to borrowthis, come borrow.
She's like you better bring itback.
But her decorations made it.
But I couldn't lay down on thewhole trip.
So, curry, I caught your littlesnidey remark like it's only 10
hours from Indianapolis to here.
Y'all need to get on it.
But it was like when Jim wastraveling we could only go an

(06:26):
hour and a half, three hours ifManny pushed the forward.
There's one time I'm like ifyou don't stop, I'm going to
punch you right in your head,kind of thing.
Yeah, and if I had and I'vetold everybody, if I had to
drive back after all that Iwould have sold my car on

(06:48):
Carvana, bought us both a ticketand I would have bought a new
car in Pennsylvania.
So shout out to Manny though,because he's driving the car
back.
But he likes most guys, likeyou know, like Curry, and like
to drive.
But he just goes exploring sohe's just going to meander his
way back up.
So I was very appreciative andI'm glad everybody got to meet
my Manny.
You know we've been friendssince we were 13.

Speaker 2 (07:12):
He's special.

Speaker 1 (07:13):
And then Dory got to connect with a gal named Andrew,
who hasn't come yet, and Megan,I think you were.
You were the first person thatsat and talked with her and I
you must've I'm assuming youmust've talked, because she said
she doesn't know if herhusband's ready to do that, and
I'm sure you talked about comingto the Thursday group.

Speaker 6 (07:35):
Yes, and we talked about listening to the podcast
and maybe getting a head starton those and introducing them to
her husband.
But just how, when you come tothe meetings, you can show up in
any way you are able to.
You can listen.
You can just have the video offCause.

(07:57):
I mean, I listened for a longtime before I said anything.
When I first joined Cause I waslike I don't know if I belong
here, and it's yes, and justseeing everyone was so
incredible.
I thought I was going to burstinto tears when I saw Carol and
Tom and Dory, but I would thinkI was so overwhelmed that I
didn't know I couldn't cry.
And then the next day and I sawSam and Tracy, and then there's

(08:20):
the waterworks.

Speaker 1 (08:23):
But it's.
It's a good kind of waterworks.

Speaker 6 (08:26):
It was incredible.
Just everything was so warm andjust this incredible feeling of
acceptance and just meeting youwhere you were, whoever it was,
whatever your involvement.
It could not have gone anybetter.
I do not see how it could have.
I mean, just the way it wasplayed, it was great, so

(08:46):
powerful.

Speaker 1 (08:48):
Tammy, you want to jump in?

Speaker 7 (08:51):
Sure, I'm trying to think so many things went on
Walking in.
Well, I met you outside, sothere's where the tears started.
And then I saw Carol frombehind.
I said that has to be Carol.
And so I talked to her, huggedand, you know, cried, and then I
just turned around and startedlooking at everybody and I'm

(09:13):
like I know cried and and then Ijust turned around and started
looking at everybody and I'mlike I know these people.
I feel like I completely knowthem and that I already they're
already family.
When I came up on the porch Itold Tom, you're the first,
first person I've ever met andtouched with Louie Boddy.
So we hugged.
So, because nobody's ever saidthat here, megan, my husband

(09:36):
said you looked awfully young tobe in that group.

Speaker 6 (09:41):
Representing for the youngins?
Yes, here.

Speaker 7 (09:43):
I am.
So I was just overwhelmed.
I had to keep sitting down or Iwould have just fallen.
I was so overwhelmed um gettingready to start crying now.
But and that song, oh my gosh,just I, I don't know.

Speaker 1 (10:03):
I wish that you could , you were able to keep it on
the video, but I know well,we'll see yeah yeah, yeah, I'm
going to post it and then I'mgoing to put a disclaimer on the
music, so we'll see how longthey last.

Speaker 7 (10:18):
So he was taught and he showed me last night.
He said see, I realized Ifinally figured it out.
You see the little C in the box, that's caregiver.
Caregiver yeah, caregiver, and Ithink that meant a lot to him.
I think the whole experiencefor any spouse at least mine,

(10:41):
who seemed before to understandand be devoted and caring, but
even a hundred percent more frombeing there, it was like, wow,
you know, they just I don't know.
Just he just, I think, lookedat me in a different light.
It was, it was the.

(11:02):
I was thinking about it thismorning.
I thought, you know, honestly,next to my children and my
marriage, it was like one of thehighlights of my life.
It was just meeting all ofthese other people that I
already feel are my parents ormy family.
I told Jay, I said you didn'tget to talk to Tom, I wanted you

(11:22):
to talk to Tom.
He's so funny.

Speaker 3 (11:25):
In a different kind of way, I did get to talk to him
a little bit.

Speaker 7 (11:32):
Did you?
Oh, I didn't know you did.

Speaker 3 (11:34):
When he, when he, when he was, when he went inside
, I went out, went over to himand I said I said let's get the
body here.
All the good seats are taken.

Speaker 1 (11:47):
Oh Lord, yeah, I forgot to tell people that the C
in the little corner meantcaregiver, like you just
reminded me.

Speaker 7 (11:55):
Oh, by the way, I thought it was neat that he
figured that out.
Not that it's anything, youknow that's hard to do.
He had looked at it.

Speaker 1 (12:06):
Yeah, my goal was like so caregiver could know,
because sometimes you can't tellwho the person with Louie is,
which is a good thing you know.
So I totally forgot about thataspect.
But, carol, I forget what yousaid to me, that I look so
different from on Zoom and I'mlike, well, first of all I just
rolled out of bed to come toZoom, so I had my hair down and

(12:30):
like actually used a brush on itdown and like actually used a
brush on it.
I think I, I think I took likethis is my pajama top.
It's got stains all over it,like this is the way you people
know me.
And then I showed up like withI used a brush on my hair.
She was just like I forget whatyou said.

(12:53):
Something like you just look sodifferent from Zoom and I'm
like, well, I said you werebeautiful.
Oh well, thank you, but I justremember thinking yeah, because
I'm in my pajamas in Zoom.

Speaker 7 (13:08):
You know one thing I forgot I felt every time I
talked to someone it was likethere were no strangers.
It was a.
I had a personal memory alreadyin my head, a personal.
I knew something we had said toeach other, or a card or just
anything.
There was a connection and Ithought that was really neat,

(13:31):
because a lot of times you meetpeople and it's like meeting
them and you really have norecollection of anything ever
having.
But I felt like I, I was like,oh yeah, Sam has a snake.
So I went out and I told myhusband I said do you do you?
Did you hear Sam?

(13:52):
He said I was doing a reallygood job.
So I haven't had a snake before.

Speaker 1 (13:56):
Yeah, curry Curry, do you remember when, at that one
point, like around two o'clock,that everybody just they weren't
coming to you Cause there was aline outside Tracy's and Sam's
travel van, cause everybodywanted to touch the snake?

Speaker 2 (14:12):
Yeah.

Speaker 1 (14:15):
It was funny.
I didn't know he had it in hispocket the night before.
I thought he was messing withme and I'm like thank God I
didn't know it was in there,because I would have been
screaming and running for thedoor.

Speaker 7 (14:26):
It was the first time I ever thought that a snake was
just downright adorable.
I love them.

Speaker 1 (14:35):
Does it have a name?

Speaker 2 (14:37):
Henry.

Speaker 1 (14:38):
Henry.
All right, henry.
Okay, I didn't know that.
I didn't want to get toointimate with the whole
situation.
I'm like keep it in the van,people can go out there and do
it.
So, carol, you want to share?
Yeah?

Speaker 4 (14:56):
For one.
You asked us to say one word.
I have two Phenomenal love.
From the minute I got off theplane till and Megan's right, we
were just like.
We both thought we were gonnacry, but then it was just like

(15:18):
so overwhelming and so excitingand and then we talked about
that later too.
Um, but uh, I didn't cuss Ray,I, I was.
I was behaved.
I even mentioned that severalpeople.
You gotta be proud of me, nocussing.
And uh, cause Linda was talkingabout all the times we take a

(15:43):
drink and I'm so proud of myself.
Um and uh, the place that westayed in was just sweet, cute.
They thought about everything.
It was comfortable.

(16:04):
I mean in every sense of theword.

Speaker 1 (16:07):
All right, that's all we have time for this week.
Please listen next week for ourfinal part three, as people who
attended the Louis Buddy meetupshare their experiences.
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