Lewy Body Roller Coaster
Lewy Body Roller Coaster
Lewy Buddy Meet-up Part 3
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.
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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:Okay, hello again. Podcast family. This is the final part three of our Louie Buddy meetup series. If you've listened to part one and two, you heard some pretty powerful answers people sharing what it was like to meet people in person. Sometimes there were a lot of times with this meetup that people with Louie Body actually got to meet somebody else with Louie Body for the first time in person. So I'm hoping you're gonna.
Speaker 1:If you haven't heard the Louie Love from the last two episodes, as we continue to go around the Zoom meeting and have people share, you'll consider joining in on our Zoom one, one of our Zoom meetings.
Speaker 1:They're all posted at the top of our pages and I think somebody said it during one of these meetings that you can just come and listen. You can turn your camera on if you want. You can keep your camera off if you want. You can just say hello and just to meet everybody and see how it's. You can just say hello, just to meet everybody and see how it's—. Many people say they're shy at first and then, once they feel the love everybody has and the way we are with each other in the Zoom meetings, that it doesn't take long for somebody who had their camera off to turn it on and just become part of our on-screen family. But we hope sharing these three episodes we had to break it up into three because our meetings are an hour and a half long, but hopefully you can hear how powerful it is to meet with people caregiver to caregiver, caregiver, hearing from other Lewy Body people or those with Lewy Body talking to other people with Lewy Body.
Speaker 5:This is our last episode of part three of our Lewy Body meetup series, so listen and enjoy it was a big mess at the gate I was leaving from, but I have to say, to take that negative away, all the staff that wheelchaired me through till that gate. They were amazing and loving and funny. Funny I mean, I just joked and laughed.
Speaker 1:Well, if you're listening, for the first time you can go to the guest services counter in an airport and request a lanyard with sunflowers on it that you can wear, and everyone should know that you have an invisible disability, like they can't ask you what it is, and you should get extra services meeting everyone.
Speaker 5:I really say phenomenal love because, second the second, I met everybody. The second I you know, you know Tom and Dory and Megan, and then I think the third person I met, he was Tammy, and our fourth person, whatever, and just from there on, the people didn't get better, but the feelings and the emotions and, and they just did like a snowball, it just got bigger and bigger and bigger and, um me and I don't remember who it was said oh me, and daisy said we wore makeup today, we weren't gonna, but we're hoping it stops it from crying, and it didn't work, it didn't work, it didn't work. And so, yeah, it was laughing, crying, everything, everything.
Speaker 1:It's like our Zoom meetings.
Speaker 5:Yes, yes, only times 10. Yeah, times 10, because you got to touch and we did. You know, I think it was only Matthew. I knew not to grab and hug and that's only because of my grandson, and then he shook, but it was good that you could just touch everyone and hug them multiple times.
Speaker 1: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 jump in? Just share how you felt.
Speaker 6:I better not because I'm already kind of weepy, but it was beautiful. Yes, every single one of you are beautiful, and I yeah.
Speaker 8: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:She's probably just listening. Hi, marilyn, good to see you. Hi, marilyn, I want to say for those listening, and if you decide to join in one of the Zoom meetings, you can just come and listen until you feel comfortable and you want to turn on your camera. Or you don't have to turn on your camera because I'm telling you I'm in my pajamas and nobody cares. But we've had people that come and 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 ask people you know to let you know your camera's not on, because sometimes you don't realize it. Brad's coming in, he went. We're just talking about the event that we had this past weekend and I'm going to post the video that I made for it. And then my daughter doesn't know this yet, but if everybody posts pictures on the Keeney Get Together Facebook page, if you've not joined that and you were there, you upload your photos and things. I'm going to get my daughter to put together pictures.
Speaker 4: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 picture home with me. Matthew and I used to talk two or three times a day every day, yeah.
Speaker 1:And Miriam. I didn't see where she said if any spouses are coming or loved ones are coming and their Louis person has passed to bring a photo. So her and Carol Obie brought one and I didn't see that. But that's a great idea for the next one and it was even though she lost her husband three years ago. It was just very meaningful for people other caregivers to talk to her and get advice from her. And yeah, it was very sweet. And, ray, there were plenty of potato chips. I brought a box, carol brought a box. Well, tammy said we had to have potato chips. It was just funny. It was funny that you said that in your video, because I'm like we got plenty of potato chips here. So, hey, brad, brad was there also. So we're just going around and sharing what the experience meant to people.
Speaker 4:Brad, it was good to finally meet you.
Speaker 9: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 guys and spend some time with you. And we got to hang out with Sharon there at the house and stuff and get to meet you guys and spend some time with you. We got to hang out with Sharon there at the house and stuff and get to know her. It was really neat.
Speaker 3:We laughed what? Until about midnight? Oh man, it was like I've known them forever.
Speaker 9:When she wasn't laughing at me, she was laughing with me you want to tell them why we first started laughing?
Speaker 7:I don't know which one was bathroom thing.
Speaker 9:Oh yeah, ick poo, there was some crud on the carpet, so it was time to drink up.
Speaker 1:I made an announcement, like right after the video, about people that were there that haven't joined in on a Zoom, and I told them that we, you know, we kind of have a drinking game, and then I explained to them what that meant. Somebody always talks about poo, so people drink. It's like my classroom in eighth grade they always talked about poop too. I don't know why.
Speaker 9:It was someone else's poo on the rug when we got there, so yeah, Well, he went into the bathroom and all of a sudden we hear wait.
Speaker 3:So that's the story you're going on and he comes out with this little carpet rug rug and he's carrying it like this to the washer and he washed it.
Speaker 1:This man knows how to use washer and dryer, all right. So the man knows how to use a washer and dryer, Alright. So the two of you. That's the story you're sticking with.
Speaker 3:It was somebody else's poo it was.
Speaker 9:We don't remember anything else.
Speaker 8:Sounds like a forgotten hallucination to me, love you, marsha.
Speaker 1:Everybody say we'll see you next time.
Speaker 5:Marsha, thanks for jumping in. Love you, marsha, we love you.
Speaker 1:Marsha, thanks for making that video it was amazing my Marsha love you. So again sorry those in the podcast if you're listening to this on the podcast, I hope you can hear the love coming from this group, like somebody just needed to leave. And you know we come in laughing, we talk about things we need to talk about. We go out laughing. You know that's to me is what makes this group so special is and we can have our friends stick to stories about someone else's poop.
Speaker 8:It went beyond just the Louis people and the spouses it came from Curry's extended family to the work they did.
Speaker 1: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 I got to meet linda yeah, because curry's linda is very private and shy, but once you get to know her she's you know you're family to her, and it was so many people said. I was so happy to meet Curry's Linda and a couple of the people that don't come into the Zoom that were there were like we thought we were married.
Speaker 1:I'm like I would kill him. He'd be dead by now, he'd be gone, but it was. I would kill him. He'd be dead by now. He'd be gone, but it was. I know for one. So many people came up and said how special it was to meet your wife, the one person who keeps you alive. Thank you yeah.
Speaker 4:I think she's pretty special yeah.
Speaker 1:Even though she has a frying pan attached to her head.
Speaker 4:Even though she's got the frying pan and the keys to the box. I don't know.
Speaker 1: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, lock key. That's not for you, buddy.
Speaker 4:I was planning on having a real sugar rush today, but it ain't going to happen.
Speaker 1:No, yeah, sam, that's not for you, buddy.
Speaker 7: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's okay. The the one word that just keeps popping in my head as we're going around sharing the. The one word for me is understanding. We understand where each other is. We understand what each caregiver goes through through. We understand that the future is unknown, but we're okay with that. It's it's. It's a terrible place to be, but having this family right here, that understands what we're going through, it's a beautiful thing. So to understand is beauty, to recognize the weakness that we have, but together we are strong. That's understanding, that's love, and love in the nth degree. That's understanding. That's love, love in the nth degree. I don't know how to.
Speaker 7:The love in this group is indescribable those who are in the family. We accept each other's words and bones and we accept it because we understand what it means. And I'm just. I was really blown away yesterday. My little son I was is Henry, and I'm not trying to gross anybody out here, but I named him Henry after the baseball super, mega ultra star, hank Aaron, who played with the Atlanta Braves in Milwaukee. When they moved to Atlanta in my childhood, hank Aaron had a presence that was very special. His influence in baseball still goes on and the reality of and I think I shared this with several of y'all yesterday as you're holding a snake for the very first time in your life and henry was being so gentle with everyone. There were a few nerves at first in the first moment, but they just evaporated and there was an acceptance there. Henry is different. Henry helps people think outside the box and accepting and the understanding's that word again.
Speaker 7:But um so, so henry is, is is my comfort pen. He had his first meal on the road. I wasn't sure how that would go, but he ate last night and he ate just like he was at home, just like he didn't have to do anything special. It was just like he was home wherever he was.
Speaker 8:Was he at Brad's Airbnb? Was he at Brad's Airbnb?
Speaker 1:Maybe that's it. Oh, that's the Revisitor. Yeah that's good.
Speaker 8:Dory wants to get me one of those snakes.
Speaker 3:I do, I do. I felt the comfort snake thing when I was holding him. I definitely could feel it.
Speaker 1:But it's just like what Sam was just describing is there's Louis language and we speak Louis language. Those you know from the outside don't get it. And we were all speaking just like we do in the Zoom. Like we, somebody says something and we know what you mean, Somebody knows what you mean or may experience the same thing, and that's kind of what happened there. It was just a zoom meeting in person.
Speaker 9: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 have this disease and you don't have to feel like you're lesser because of it, because everyone is an acceptance of it. That's what you feel.
Speaker 3:Does it not make it worth having Louis? Because you know, if we didn't all have Louis, we wouldn't be friends. Yeah, it's only because we all understand each other, and whether you have it or whether you're someone who's with someone who has it, it doesn't matter. Do you know what it is, linda louis?
Speaker 1:love louis love that's that's our namey namey, who's from ireland, who was gonna make the trip, but she had a family illness. So, um, we had a spot for you. We had a spot at the table for the Louis Love. Yeah, it's just-. Next time for sure, next time for sure, for sure. And Brad, I mean it's funny because when I met Dee, who is a spouse to me, she looked really tall on Zoom. And when I met her, she's like two inches tall, shorter than me, and I'm like what. And then when I met Brad, I was like you're pretty tall, because I'm only 5'4 and something, and I was like, oh, I didn't think you were. So it's funny how like you don't realize how tall people are on Zoom.
Speaker 9:When you put your legs on, it makes you a little taller.
Speaker 1:Yeah, or shorter.
Speaker 9:Or shorter yeah.
Speaker 1:She was only five foot or something. I'm like what you look, taller from the waist up. But it was nice your wife got to come, Brad.
Speaker 9:Thank you, it was good for her. It helps her understand a lot more, I believe, because she just was able to understand a connection now. It was good to meet her too.
Speaker 1:Yeah, I hope she. You know, I don't know if she goes to the Saturdays zoom meeting, so maybe she will.
Speaker 9:Now that she's met, she's went once but she didn't give it enough time to just get involved because it took me some time to open up and start to talk and when you're not used to being on zoom, but she does business on zoom with, so she's used to doing it. So, yeah, I think maybe you know she did talk more about it, so maybe she will. You know, whatever I feel like will help her, you know.
Speaker 9:Yeah, go ahead, go ahead, no it just you know, yeah, because go ahead, go ahead. No, it's just you know, our, our, our spouses are our care. We became caregivers or caretakers and so that it wasn't something they were expecting to do. But but you know, through the process she really became a good caregiver and I appreciate that in her, because I know that she had to take on a different role than what she expected with me.
Speaker 1:Right, yeah, yeah. And it's just as powerful as it was the Louis people in the group to meet face-to-face for caregivers, to meet other caregivers face-to-face and just sit and have that one-on-one talk.
Speaker 3:I was going to say that, as far as a caregiver, it meant so much to me to meet everybody. But when I saw sweet Tracy and Dory and are there any other caregivers on here, tracy and Dory, and are there any other carriers on here? I bawled, because I know that they know what I'm going through and all you that have Louie body know what each other's going through. And I wasn't an outsider when I first came on. What I don't even know if it's been a year or whatever. I absolutely do not feel like an outsider. And from the time I got up Thursday morning I was so excited. And when I got there and I got those hugs and that love, it's just, I can't even explain it. You guys, it meant so much to see you and hug you and touch you and talk. Oh my gosh, you're family. You guys are better than some of my own family.
Speaker 1: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 to you, tom, or not, but I was chained into trash cans because I was getting the Airbnb ready, you know, for us to leave the next day. Or maybe I was just standing there by myself, I don't know, but I I just got this. This is going to make me cry. Now I'm going to get through it, curry, this overwhelming feeling and I said Louis sucks.
Speaker 1:But oh my God, like I now know all of you amazing people and you're all in my life now and it was just I don't know it, just I don't know why it happened while I was changing, changing the trash, but I think I, I think I was alone and it was quiet and you know, and it just kind of yeah. So you know, I always say, like Zoom, people meeting on Zoom, I think COVID, it became more acceptable. So that's a positive came out of COVID, but meeting you people is definitely a positive coming out of this dreadful disease.
Speaker 8:And.
Speaker 1:Carla was there with us.
Speaker 8:Oh, yeah, carla, who there with?
Speaker 1:us. Oh yeah, carla, she is sweetheart. Yeah, yeah, that was special that she flew out. Yeah, it was just Louis. Love, that's what it is, amy.
Speaker 5:And everyone is. I mean, I'm still shocked by this Is so much more beautiful, beautiful and handsome in person. Like that was one of the first things I noticed. Like sorry, zoom, doesn't do you guys justice, because you guys are truly handsome and beautiful. I was just amazed, not that that would have made a difference. I'd have loved a deadly one just as well. Amazed, not that that would have made a difference.
Speaker 1: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 people said that, oh my God, your hair.
Speaker 6:I'm like, yeah, well, I don't have a reason to put it down on Zoom, something I noticed right away with Tom and Dory when I got close to them, but they both have beautiful blue eyes and that's something that you do not see. Yeah, yes, yes, this medium, yeah, so, if you don't know, they both have beautiful blue eyes. They do.
Speaker 1:And amazing hearts and souls. So if you don't know, they both have beautiful blue eyes. They do and amazing hearts and souls, and Tasha and I had some heart and hearts on the back porch. I just want to say you two are in black and white today, tracy and Sam. Does anybody look like they're in black and white today? I think sepia.
Speaker 8:I was like is it me?
Speaker 1:It's no big deal, I'm just. Oh, there you go.
Speaker 8:Yeah, that's better. I thought they were learning protective coloration from this snake.
Speaker 6:We literally, honestly, we literally rolled out of bed, put this table up and yeah, yeah, that's how we're going to say it.
Speaker 1:I brushed my teeth for you people today. So there's that. That's all the time for this week podcast family. So we hope that you enjoyed these, this three-part series, and we'll consider joining in on one of the zoom meetings in the future thanks for listening.