Lewy Body Roller Coaster

Lewy Buddy Meet-Up Part 1

Episode 18

Welcome back Podcast Family!
This week we are sharing part one 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.

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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Speaker 1:

welcome back podcast family yes, welcome back y'all and, as always, we want to thank all of you who have been patient with us as we do our best to get on an episode out each week, um, but we know sometimes louie and life get in the way. Our goal is to get caught up and ahead the best we can.

Speaker 2:

Yes, and we always say that if it wasn't for all of you all, we may have stopped after the first few episodes. Because, to be quite honest, for the two of us who knew nothing about doing a podcast and in all fairness, we still don't, but we have helpers it is a lot of planning but worth all of it if someone can learn from what we share or how we feel and they learn that they're not alone on this journey. But we wanted to send a shout out to andrew zapula this week for all he does editing the podcast for us each week. Before start, I want to give a shout out to some of our supporters. This week we've got Fred Pounds, lana Badcock, pia Bedard, michelle Austin, lisa Seavers and all you other good folks who help keep us supported. Thank you all.

Speaker 1:

The next three episodes are going to be a bit different than what we usually do. Carrie and I asked our Monday Zoom members if we could record them for a Zoom meeting after our big Louie Buddy meetup in Caney, kansas, on September 14th 2024. I hope you can hear the love, as those who were there at the event share their feelings on what it was like to meet some of the people. You have been in a Zoom meeting with Some people for up to three years now, so here's part one of our three-part recording called Louie Buddy Meetup. We're recording a live Zoom meeting, the first Zoom meeting after our Caney meetup, so we'll let Andrew do his thing, but it might not sound the same as normal, because I just asked everyone if it would be okay if we record it today so they can share their feelings about last weekend, especially with the couple people that are here right now that couldn't make the trip but were in the video, which, technically, you were there, but anyway. So, curry, how are you feeling, though, because that was….

Speaker 2:

I'm doing pretty good.

Speaker 1:

Yeah, did you crash afterwards?

Speaker 2:

Yeah, yeah. I was up and down all day long. I slept, slept more than I was awake right now you are.

Speaker 1:

When you left the place, uh, you told me to tell Linda and then I, by the time I got to her, like you know, by the time I got there, I totally forgot. I was supposed to tell her for like five minutes and then I was like, oh, curry said he needs to go home and she said, well, he went, he went. And I was like he put the jazzy in his car himself and he drove, and she's like, no, he took his jazzy home. I'm like, oh yeah, so it was. I mean, we literally didn't even remember to record live because I got a selfie stick just for that and I took all the podcasts off there because someone wanted me to record a podcast during the event.

Speaker 2:

Yeah, there was no way.

Speaker 1:

I was like I told them I'm bringing it, but don't be mad at me if I don't show it. And for those of you that weren't there, like Curry thought I needed a screen because I told him my daughter showed me how I can project the podcast logo up on the wall, because he didn't know about the video until like two minutes before and so I went over. I'm like listen, I made you a video, so I just want you to know that's what the screen was really for. And what did you ask me? I don't know. You were like you're not going to embarrass me, are you?

Speaker 2:

Oh, yeah, yeah.

Speaker 1:

So I lean in like all gentle and stuff and I'm like do you think I would? Really embarrass you, and he's like, yeah, yeah, yeah, nami, did you get? I tried this. I don't know if I sent you the video. Did I send you the video yet?

Speaker 3:

Yeah, I did get it and it was amazing to hear and to see and everything but God, how much I missed you. Yeah, but that's the way. Look like you all have fun. I mean, I want to know every single detail.

Speaker 2:

Yeah and we're. I've got to apologize to everyone because I did not. I didn't take a single picture with my phone and I never got a chance to go live. I was. It seemed like I had someone with me all day. Yeah, and I never got a chance to go live. I was, seemed like I had someone with me all day.

Speaker 1:

Yeah well, you were a celebrity and Amy and Dory and Tom. I'm recording this, so I'm going to ask Andrew to just share it. Do what he does and share it.

Speaker 6:

That's why we're not speaking.

Speaker 1:

You need to raise your hand before you speak, Tom.

Speaker 3:

So I know.

Speaker 1:

No.

Speaker 3:

I've got a sensor bar, yeah, sensor bar.

Speaker 1:

Well, that's Andrew, I'll be like three minutes and 12 seconds in top center Bleep out Tom, that kind of thing. But anyway, it was um name me. I was telling the group that there was a girl and her sister there and her husband has louis, but he didn't come and my goal with the video and like I showed the video to tom and dory at at the place I rent it and I was like, all right, my goal is like everybody's just gonna get arm in arm and sing the song together, that would just be very emotional and it was much more than that. Like literally everyone just start walking around hugging each other while singing and it was just I can't even I have the chills just even talking about it. I wish.

Speaker 1:

My only regret is we didn't videotape that and I didn't sit in front of Curry to see his face during the video. But I think one of your childhood friend was taking pictures. So if anybody hasn't joined the Keeney get together page that was there, do that and upload your pictures. I took two pictures and it's what the place looked like after we decorated it and have you any idea how many people were there?

Speaker 3:

Linda?

Speaker 1:

I think we had 52 there was more than one wow yeah, we had a couple like last minute, like the night before, like oh my god, I forgot to send you this and um it what you know what I'm. I think it was the perfect number because I think many, too many more would have been too much so you're saying you're glad I didn't make it you were missed. You really you were very much missed. Oh my god, yeah, we had. I had a spot right next to me on. I put your t-shirt.

Speaker 6:

I'm like that's name, you see, so I have your t-shirt no, the people, the people who weren't there gave such moving messages like marha they really did.

Speaker 2:

Thank you, Marsha.

Speaker 6:

Yeah, and Ray and Rose. There's only one critique. You know that microphone named Olaf? Oh yeah, I got him right here. He should have been renamed, should have been dressed up like a duck and he should have been one of Donald's nephews, huey Dewey and Louie.

Speaker 2:

Huey Dewey and Louie, Huey, Huey and Dewey. He should have been Louie. Well, I'll make sure we get him an outfit.

Speaker 5:

We're staying in Dewey Oklahoma.

Speaker 6:

Yeah, so we were in Dewey Wow.

Speaker 1:

People laughed at your video, for sure, and that was, and we Did. I send you pictures, pictures namey of the ranch, oh god, yeah, yeah, it was just I mean, was it brilliant?

Speaker 3:

did you get in the lake or not?

Speaker 1:

well, so the place that I rented for those listening in podcast land has a lake and dory. What did it say in the book? Like they give you a book, an airbnb book of things. What did it say?

Speaker 5:

I looked at. I looked at it in advance and it said a private lake. But way, way, way down it mentioned once swimming and so I thought, oh, there's something not right about the swimming thing. We brought our bathing suits but we were very cautious. And then in the in the book in the house it said you can swim, but there's snakes. We. We were like, okay, no, thank you.

Speaker 3:

They're okay. You should be so lucky to see one.

Speaker 4:

Oh yeah.

Speaker 1:

It was yeah, so that. But Tom got up every morning and went out and he found fossils and it was just we got to see the sunset. It was just like Martha came.

Speaker 6:

So she's going to be thanking you, naomi, because she came last minute and I'm like naomi said oh brilliant, that's fantastic that is fantastic and carla got to come it was really good and we got to see uh, a leprosy carrying armadillo okay, as you would there was an armadillo hanging around Several armadillos at night Were there really.

Speaker 3:

I have never seen an armadillo.

Speaker 1:

Oh my gosh, that's what Manny saw when he came home late at night and he said there was this big thing and he could see it and it scurried away. But Texas.

Speaker 2:

there's supposed to be more armadillos in Texas than anywhere, but we saw more armadillos when we lived in Oklahoma than we ever did in Texas.

Speaker 1:

Wow, well, I'm glad I didn't see one. I was afraid of Sam Snake, where everybody else stayed.

Speaker 3:

Were they all good? Were all the places that everybody stayed good? Everybody you know end up near enough and it all worked out in that way, yeah.

Speaker 2:

Yeah.

Speaker 1:

Yeah, Like I think Tom and Dory picked up Carol Megan and took them to their Airbnb and they stayed there and chatted a while and it was just.

Speaker 5:

They loved Caney.

Speaker 6:

Oh yeah.

Speaker 5:

Caney was just the nicest small town. What a nice feel it has to it.

Speaker 6:

Yeah, really really pretty, it was absolutely beautiful.

Speaker 5:

Oh yeah, Really nice. The lights over the main street at night are pretty.

Speaker 2:

Yeah, the zigzag yeah.

Speaker 3:

Yeah, carol, and I took a quick jaunt down the main road and took some pictures from the middle of the street.

Speaker 5:

Yeah, I'll post those.

Speaker 1:

Yeah, it was just great, but first Did.

Speaker 2:

Carol behave herself. That's between.

Speaker 5:

Carol and I. What happens in Caney stays in Caney.

Speaker 2:

Okay, that's what I thought. Did your pinky swear on it Of?

Speaker 5:

course that's funny, I thought Did your pinky swear on it? Of course, yeah.

Speaker 1:

Okay, that's funny and the place I run it. We had that saying many times what happens in Kenya stays in Kenya. But I want to ask Marcia, how is Stephen doing how you been doing?

Speaker 4:

We are doing okay. Time goes on and you know there are things that come up. I would have really loved to see Linda and Annie when they drove through Indianapolis, but the night before I had discovered that Stephen had a UTI and I had to attend to that and he was not in real good shape and not up for company. But you know, those are just the things that happen and that's part of Lewy body dementia and you all know that far better than I know it. But our days are good and we're still living a good life, curry, just like you promised.

Speaker 2:

Yeah.

Speaker 4:

But you know, we lead a very quiet life and that's you know. That's why one of the reasons that this group has been so important and what Curry has done has been so important, and what you helped him do, linda, has just been a gift to everybody who has been touched by it, because it's very isolating and this helps break the isolation. Yeah, so I'm glad to see all of your little faces again. Hi, carol, it's so good to see you.

Speaker 6:

Yeah, it really is, it's really good to see you.

Speaker 5:

It was so good to see you on the video Saturday and now here, sort of almost in person.

Speaker 1:

I'm telling you, it was like, oh, like everybody. That was the sound of the whole room when the video came on. It was just very sweet. And then to end it with Teepa Snow Curry, you were I think you were really shocked with that.

Speaker 2:

I was.

Speaker 1:

Yeah, yeah. So it was hard to lie to you, my friend. Easy, not really hard, but yeah. But you know I was trying to get your family like, just tell them I need it to project the podcast logo on the wall.

Speaker 2:

I kept asking Lorraine what the hell she need a projector for. I don't have any idea. She just said she needs one.

Speaker 1:

He just said a bad word Drink up people.

Speaker 2:

Oh yeah.

Speaker 1:

Now I got to edit that out, put a blooper.

Speaker 6:

Whoops, yeah. And the biggest strain on Curry was it was like you should have had a like a North Pole background instead of that big sign, because it was like everybody was getting their picture with Santa outside and then it was well.

Speaker 1:

He went out for his bed habit smoke, but them were like he's been out there a long time and you'd go out the door and there'd be like a line of people just waiting to to say hello to him and I gave him a, because everybody had a lanyard with their name and I. I was like I'm just gonna, I know people are gonna know you, but you got to wear your lanyard. I was like I don't know if people are going to know you, but you've got to wear your lanyard, put it on.

Speaker 6:

Yeah, the only disappointment, curry, was when Martha and Dory were late. I had arranged with Jesse to go outside the building when they came and inform them that the fire marshal had informed them that they'd reached the capacity and that they wouldn't be allowed in. Had informed them that they'd reached the capacity and that they wouldn't be allowed in, but you went out and you took your entourage to smoke and spoiled it.

Speaker 1:

It literally was. And when he would go outside the smoke there'd be like all his peeps, like his would walk outside with him.

Speaker 2:

Yeah, it was nice, it was a fun day.

Speaker 3:

Was there serious amounts of those chocolates that you all liked?

Speaker 2:

I'm sorry.

Speaker 3:

Was there serious amounts of those peanut chocolates that you guys all liked?

Speaker 2:

Oh, I got a bunch of them.

Speaker 3:

Yeah.

Speaker 2:

I got a wooden box full of them RC and peanuts.

Speaker 3:

That's the end of your diet.

Speaker 1:

Yeah that. I would have liked the video too. Tracy and Sam were nice enough to get a box, a really big box, a wooden box, and spray paint it, and we got a lock for it In the box. I put a case of RC Cola, two things of peanuts, his something bar zero bars, reese's. What else was in there, peanuts?

Speaker 2:

his something bar, zero bars, zero bars, yeah.

Speaker 1:

Reese's. What else was in there? There was something.

Speaker 2:

The moon pie.

Speaker 1:

Oh, the moon pies that I brought from Philadelphia. The whole way I had to have ice the whole way for those moon pies. So I, after the video, I presented them this box and then I proceeded to shut the box, lock it with the key, and then I walked the key over to Linda.

Speaker 2:

Which, by the way, she still holds the key.

Speaker 1:

I know I was like here's all your treats from us, but your wife is going to control the key, so yeah, that was pretty.

Speaker 5:

And then Linda put Reese's. Everybody got a bag and it had the NIH pamphlet and a pad of paper to write down contact information and there were four Reese's in there and that got me home. I didn't have to eat the terrible Delta granola bars because I had those nice Reese's.

Speaker 6:

Yeah, well, I didn't get any of those.

Speaker 5:

No, it was huge across the aisle so I got to have them all.

Speaker 1:

So I put a business card and then with the QR code, so I just thought so it was a purple bag with a purple book, with a purple pen, with a purple lanyard, with a purple sticker, so that when you walk around and you start meeting people, people were writing contact and all that stuff. And then just I know there was a gentleman, don Kent, there, and I don't know if anybody's, I would look him up on Facebook. He's a retired lawyer and his wife is a retired judge. So they were there and he, you know he's one of those advocates you know, with Louis, like Curry, and he just did anybody else see the video of him hiking some trail, like he was? He showed me this video of him going on this hike and and it's, he said he's picking up the reins from the gentleman who had Louie for over 10 years that had passed. You might know him, corey, I think you mentioned his name.

Speaker 2:

Robert Bowles.

Speaker 1:

Yeah, because he had this. His theme was ASAP and I thought it was like, oh, you live your life, you know, do what you want to do as soon as possible. But it wasn't. It was an acronym for something else that I wish I could remember. So his name is Don Kent and I remember watching a video of him very, very beginning. I told him that I just don't remember, but it was just very sweet. And there was Kara Colby came because she lost her husband three years ago, and Miriam came with her son, matthew, so that she, just like I, was standing outside the door Next thing I know I saw this person like jumping over the curb at me and she was like Linda. I was like, oh, my God, you're real. You're real. Like with Tammy. She was the first one to make me cry. I just no.

Speaker 1:

I just heard you say Linda, and I was like turn around to you and I was like oh, yeah.

Speaker 2:

And it was the tears. It turns out that Carol Colby. She'd been in the group a long time and she just lives about 45 minutes from here.

Speaker 1:

Yeah, that's what she said. All right, so ASAP means acceptance, socialization, attitude and purpose. So he goes around and gives that speech for the other guy who had passed. So it was. Yeah, I, I've tried, like my friends are saying how did it go? And I'm like I don't even, can't even come up with like the right word to describe it. I don't know, harry, how was I'm going to go around and ask people how was it for you?

Speaker 2:

Oh man, I said there were more people there than what I would even imagine would have showed. And you and the girls, everyone who worked on putting that thing together, Manny included and Jesse and Randy everyone done good, it was just exceptional.

Speaker 1:

Well, I didn't want it to just be. I kept telling and Tracy will attest to this like we went the night before to decorate and I was like, okay, I want three tables here and three tables here and this, this. And she's like, oh, that's a teacher brain right there. But I didn't want it to just be white tables and chairs, like I had envisioned that I wanted to look warm and inviting when people walked in. Envisioned that I wanted to look warm and inviting when people walked in, so it was decorated like autumnal decorations, but getting to meet everyone was just outrageous.

Speaker 2:

It was great.

Speaker 1:

Yeah Well, I didn't think to take one. You know you go to the deli here in the States and you take a number. I was like I probably should have bought one of those so people could take a number to take one. You know you go to the deli here in the States and you take a number. I was like I probably should have bought one of those so people could take a number to go see Carrie, because there was a line.

Speaker 3:

I would have just marched on top of everyone. I'm sorry.

Speaker 1:

No, you would. It was just and you've hugged people more than once Like you'd be walking, like I was making sure the food was everything. I'm like, oh, carol, again give me a hug. You know, it was just that kind of atmosphere and to be able to sit and just like I sat across from Megan I can remember this and like just this close to me and she's in front of me and just everybody just went around and I think everybody made time to sit with everybody. You know what I mean.

Speaker 2:

Yeah.

Speaker 1:

To sit a spell with everyone.

Speaker 2:

And, like Linda just said, the only thing that we really needed and we missed was a sign-in book.

Speaker 1:

Well, curry didn't know who all registered. You know it was kind of we, just you didn't need to know that I need seven. You know gold tablecloths and seven moms and Tracy came to the rescue and put a bow around. It was just. It really was a group effort to make it happen and you didn't really need to know the details, those little details. But his soon-to-be grandson-in-law smoked some of that bologna that Curry always talks about.

Speaker 2:

Yeah.

Speaker 1:

So I got everybody's attention. Once the the food line started, I'm like I just want to you know, give you, let you know. Over here there's peanuts in this stuff, so if you have peanut allergy, be careful. And then I explained we had um. What do we don't the?

Speaker 2:

only thing about his smoked bologna was he didn't get crisp enough on the outside and it wasn't wrapped.

Speaker 1:

And it wasn't wrapped in bacon, right, it wasn't wrapped in bacon. But I was like there's salad, there's chicken finger you know chicken fingers and the baked beans are vegetarian. And you know I was. You know there's coleslaw. I was explaining it and then I'm like and there's some of that bologna that Curry always does, and everyone was like and I did not turn the baloney down either like that was the big hit right there and did you all like finish at 4 o'clock, or what waiters we?

Speaker 1:

around 3, I think people, which was 4 hours there, you know, and so there were still people there around 4.30, but what was good is people knew when they hit their limit and they would leave and that was yeah. So I think two to three was when I think I was getting tired. So I can imagine people with Louie are getting tired, but I think everybody's showtime, because I was hoping Curry would showtime because he hasn't really slept in a while and I'm like I really hope you go home and just don't wake up until Monday. But you did, you finally got some sleep right? Yeah, I did.

Speaker 2:

Yeah, we all got here in snow for a few right? Yeah, I did, and then we all got here and snore for a few minutes.

Speaker 1:

Yeah, you do you have a cute snore. I, on the other hand, she raps for windows, yeah, but Tracy and Sam drove their RV van to the ranch and hooked up, so they got to spend a lot of time there because it was ridiculously big and that was like my goal was and I was going to invite Carol and Megan back, but then Tom and Dory wound up staying and talking with them, which was great afterwards, and I was like, okay, that's good, it was just, I don't know, very powerful.

Speaker 4:

It really was yeah.

Speaker 1:

Because I've been seeing you guys on this screen for three years some of you and to see it in person, yeah. So, tom, why don't you explain what it meant? I'm going to just have a couple people share their thoughts. Tom, why don't you explain what it meant?

Speaker 6:

I'm going to just have a couple people share their thoughts. Well, it would just, it'd be so hard to say in a few minutes, it's just so you know you'd have to say it was surreal and it was powerful and it was extremely, extremely moving and everything was just right. Everything I mean, like all the people involved, all of you know I can't. You know Curry's family, you know you, and Manny and Tracy and Sam, and you know, and Tracy's you know, so you know tasteful and beautiful decoration of the centerpieces and the venue and it was like you know just everything. It was just, and the food Couldn't have been any better.

Speaker 6:

It couldn't have been any better and I was. It was one of the most moving and beautiful things that you didn't want to end and you knew it had to and it was just, oh, just meeting the people. It was that was so surreal because 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's hard to describe for me because it was just a. It was like I already know you, I don't need to meet you, but I get to hug you, I get to hug Sharon, I get to hug all you know Megan and and and and Tracy and Sam and Carol and and Tammy and and just. You know Linda, everybody and you know it just. And then we were lucky enough to transport Carol and Megan, so we got to talk. I shouldn't say that, carol, you got to listen to me in the back seat for I don't know several hours, but you can say at least we did spend time together, yeah.

Speaker 4:

Yeah, but there's a lady between us, very, very sweet Emmy.

Speaker 6:

Oh, emmy, and we sat on the porch and we talked for hours.

Speaker 1:

Yeah, that was nice.

Speaker 6:

It was really nice. It was just, everything was nice, everything was beautiful. The film was so indescribably moving. It was like people just sobbed. I became totally and no exaggeration, I just became totally incapacitated after that film. I just did. It was that moving. Thinking about it now almost makes me weep.

Speaker 1:

That's all the time we have for this week. Please listen next week for part two of our New we Buddy meetup.