Lewy Body Roller Coaster
Lewy Body Roller Coaster
Lewy Buddy Meet-Up Part 2
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!
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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:Welcome back to part two of our Louie Buddy Meetup. As members of the Zoom group our Monday Zoom group who actually attended this Saturday prior to the meeting, the meetup in Caney, kansas, all share what it was like meeting the people, some people that they've only seen on a screen, some people up to three years you've been talking to people on Zoom and some people were able to travel to the meetup. We had about 55 people, which was a perfect number, because I think too many more might've been too much. So it was just a perfect, intimate experience where everybody got to sit and chat and hopefully, as you hear from everyone who's been sharing last week, this week and next week, you will feel the Louis love as you listen. Enjoy part two.
Speaker 3: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. 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, oh, you know megan, and 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 to transport, uh, uh, uh, carol and megan. So we got to talk. Oh, 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.
Speaker 4:Yeah, but there's a lady between us, very, very sweet Emmy.
Speaker 3:Oh, emmy, and we sat on the porch and we talked for hours. Yeah, that was nice, 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:Yeah, now Tom and Dory watched it. I just wanted to make sure it wasn't too long so I was like, can you guys watch it? So I showed it to them at the ranch that we rented. And Dory what did? Because you already saw it, but you shared with me what it was like watching it with everybody.
Speaker 5:Yeah, we saw it and it was wonderful. And then when I saw it in the room with everybody, it was so powerful. I mean that room was just filled with love and gratitude and I think that's what made it even so much more moving. And of course, tipa just pushed it right over the edge at the end. It was just incredible and I mean I'm not one to stand and sing and I'm very reserved and I'm like stand, sing, hug, cry. I mean it was just unbelievable, it was very powerful. Being in that room with everybody really was.
Speaker 1:There's so much energy there yeah, you summed it up perfectly. It was just so much love in that room and like Tom I think Dory or Tom like the second day we stayed together in the same house. He was like technically we're. Somebody said, technically we're strangers, but here we are just staying in this house like we've known each other forever and it felt it was like no big deal. You know, you know these people. And yeah, it was. And Curry's daughter, Lorraine, was asked. She kept coming over and she's like another person said when are we doing the next one?
Speaker 1:We're but my car was so full with like all the, I stole Sarah's decorations, just went around her little apartment. I'm like I'm going to borrow this, come borrow. She's like you better bring it back. But her decorations made it. But I couldn't lay down on the whole trip.
Speaker 1:So, curry, I caught your little snidey remark like it's only 10 hours from Indianapolis to here. Y'all need to get on it. But it was like when Jim was traveling we could only go an hour and a half, three hours if Manny pushed the forward. There's one time I'm like if you don't stop, I'm going to punch you right in your head, kind of thing. Yeah, and if I had and I've told everybody, if I had to drive back after all that I would have sold my car on Carvana, bought us both a ticket and 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, like you know, like Curry, and like to drive. But he just goes exploring so he's just going to meander his way back up. So I was very appreciative and I'm glad everybody got to meet my Manny. You know we've been friends since we were 13.
Speaker 2:He's special.
Speaker 1: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 that sat and talked with her and I you must've I'm assuming you must've talked, because she said she doesn't know if her husband's ready to do that, and I'm sure you talked about coming to the Thursday group.
Speaker 6:Yes, and we talked about listening to the podcast and maybe getting a head start on those and introducing them to her husband. But just how, when you come to the meetings, you can show up in any way you are able to. You can listen. You can just have the video off Cause. I mean, I listened for a long time before I said anything. When I first joined Cause I was like I don't know if I belong here, and it's yes, and just seeing everyone was so incredible. I thought I was going to burst into tears when I saw Carol and Tom and Dory, but I would think I was so overwhelmed that I didn't know I couldn't cry. And then the next day and I saw Sam and Tracy, and then there's the waterworks.
Speaker 1:But it's. It's a good kind of waterworks.
Speaker 6:It was incredible. Just everything was so warm and just this incredible feeling of acceptance and just meeting you where you were, whoever it was, whatever your involvement. It could not have gone any better. I do not see how it could have. I mean, just the way it was played, it was great, so powerful.
Speaker 1:Tammy, you want to jump in?
Speaker 7:Sure, I'm trying to think so many things went on Walking in. Well, I met you outside, so there's where the tears started. And then I saw Carol from behind. I said that has to be Carol. And so I talked to her, hugged and, you know, cried, and then I just turned around and started looking at everybody and I'm like I know cried and and then I just turned around and started looking at everybody and I'm like I know these people. I feel like I completely know them and that I already they're already family. When I came up on the porch I told Tom, you're the first, first person I've ever met and touched with Louie Boddy. So we hugged. So, because nobody's ever said that here, megan, my husband said you looked awfully young to be in that group.
Speaker 6:Representing for the youngins? Yes, here.
Speaker 7:I am. So I was just overwhelmed. I had to keep sitting down or I would have just fallen. I was so overwhelmed um getting ready to start crying now. But and that song, oh my gosh, just I, I don't know.
Speaker 1: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'm going to put a disclaimer on the music, so we'll see how long they last.
Speaker 7:So he was taught and he showed me last night. He said see, I realized I finally figured it out. You see the little C in the box, that's caregiver.
Speaker 7:Caregiver yeah, caregiver, and I think that meant a lot to him. I think the whole experience for any spouse at least mine, who seemed before to understand and be devoted and caring, but even a hundred percent more from being there, it was like, wow, you know, they just I don't know. Just he just, I think, looked at me in a different light. It was, it was the. I was thinking about it this morning. I thought, you know, honestly, next to my children and my marriage, it was like one of the highlights of my life. It was just meeting all of these other people that I already feel are my parents or my family. I told Jay, I said you didn't get to talk to Tom, I wanted you to talk to Tom. He's so funny.
Speaker 3:In a different kind of way, I did get to talk to him a little bit.
Speaker 7:Did you? Oh, I didn't know you did.
Speaker 3:When he, when he, when he was, when he went inside, I went out, went over to him and I said I said let's get the body here. All the good seats are taken.
Speaker 1:Oh Lord, yeah, I forgot to tell people that the C in the little corner meant caregiver, like you just reminded me.
Speaker 7:Oh, by the way, I thought it was neat that he figured that out. Not that it's anything, you know that's hard to do. He had looked at it.
Speaker 1:Yeah, my goal was like so caregiver could know, because sometimes you can't tell who the person with Louie is, which is a good thing you know. So I totally forgot about that aspect. But, carol, I forget what you said to me, that I look so different from on Zoom and I'm like, well, first of all I just rolled out of bed to come to Zoom, so I had my hair down and like actually used a brush on it down and like actually used a brush on it.
Speaker 1:I think I, I think I took like this 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 with I used a brush on my hair. She was just like I forget what you said. Something like you just look so different from Zoom and I'm like, well, I said you were beautiful. Oh well, thank you, but I just remember thinking yeah, because I'm in my pajamas in Zoom.
Speaker 7:You know one thing I forgot I felt every time I talked to someone it was like there were no strangers. It was a. I had a personal memory already in my head, a personal. I knew something we had said to each other, or a card or just anything. There was a connection and I thought that was really neat, because a lot of times you meet people and it's like meeting them and you really have no recollection 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 my husband I said do you do you? Did you hear Sam? He said I was doing a really good job. So I haven't had a snake before.
Speaker 1: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 a line outside Tracy's and Sam's travel van, cause everybody wanted to touch the snake?
Speaker 2:Yeah.
Speaker 1:It was funny. I didn't know he had it in his pocket the night before. I thought he was messing with me and I'm like thank God I didn't know it was in there, because I would have been screaming and running for the door.
Speaker 7:It was the first time I ever thought that a snake was just downright adorable. I love them.
Speaker 1:Does it have a name?
Speaker 2:Henry.
Speaker 1:Henry. All right, henry. Okay, I didn't know that. I didn't want to get too intimate 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:For one. You asked us to say one word. I have two Phenomenal love. From the minute I got off the plane till and Megan's right, we were just like. We both thought we were gonna cry, but then it was just like so overwhelming and so exciting and 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 several people. You gotta be proud of me, no cussing. And uh, cause Linda was talking about all the times we take a drink and I'm so proud of myself. Um and uh, the place that we stayed in was just sweet, cute. They thought about everything. It was comfortable. I mean in every sense of the word.
Speaker 1:All right, that's all we have time for this week. Please listen next week for our final part three, as people who attended the Louis Buddy meetup share their experiences.