Welcome back everyone!
This week, we wanted to share about the Lewy Buddy and Cargiver Meet-Up happening September 14, 2024 in Caney Kansas.
Gather 'round the warmth of our virtual fireside, as Linda and I, in a rare moment of quiet reflection, express our heartfelt thanks to you, our dedicated listeners. We're thrilled to extend an invitation to our first annual Lewy Buddies and Caregivers Meetup in Caney, Kansas, a beacon of connection and support in the tempest of Lewy Body Dementia. As we navigate the ebb and flow of this condition together, we welcome your stories and insights, bolstering our mission to educate and unite.You will hear all the details on this event first.
And then , Curry share about his newest Lewy dip and what symptoms he has been experiencing.
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/c416ecb6
Thank you for listening.
Don't forget to join our Lewy Body Roller Coaster Podcast Facebook page.
Welcome back everyone!
This week, we wanted to share about the Lewy Buddy and Cargiver Meet-Up happening September 14, 2024 in Caney Kansas.
Gather 'round the warmth of our virtual fireside, as Linda and I, in a rare moment of quiet reflection, express our heartfelt thanks to you, our dedicated listeners. We're thrilled to extend an invitation to our first annual Lewy Buddies and Caregivers Meetup in Caney, Kansas, a beacon of connection and support in the tempest of Lewy Body Dementia. As we navigate the ebb and flow of this condition together, we welcome your stories and insights, bolstering our mission to educate and unite.You will hear all the details on this event first.
And then , Curry share about his newest Lewy dip and what symptoms he has been experiencing.
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/c416ecb6
Thank you for listening.
Don't forget to join our Lewy Body Roller Coaster Podcast Facebook page.
Welcome back podcast family.
Speaker 2:Yes, welcome back y'all.
Speaker 1:Just another quick shout out to everyone for your continued support and patience.
Speaker 2:Yeah, we want to thank y'all for being so patient and supportive of us as we try to get these things out every week.
Speaker 1:Yeah, we did pretty good for the first, like eight, seven or eight weeks this year.
Speaker 2:Yeah.
Speaker 1:But well, we're going to share some of the reasons why we've had a hiccup in the last week or so, but we just want to remind all of our listeners that's important for us. The medical community can hear from those affected directly, so they hear from more than one person, and we've been told a couple of our new people in our groups have said that they heard about it from their doctors. So good job to everybody that keeps sharing, because the more we share, the more people are going to know and more the less time people get the know. We body what question?
Speaker 2:Yeah, exactly, the more we share, the more, the more we're getting out there, yep. But, folks, I also want to remind y'all that if you'd like to be a guest and share your story and hopefully helping others, you contact Linda Zipula or myself through Facebook Messenger or through our email, which is Louis Body Roller Coaster at gmailcom. We'd love to have you on the show.
Speaker 1:Yep, and if you want to be a supporter, there are links in the under the announcements that show you how you can help us keep the podcast going. And just a reminder real quick the current. I do not use any of the funds for ourselves. They're used to defray the costs of editing, recording the zoom meetings and to help others behind the scenes as well. So thank you all who have continued to support us.
Speaker 2:Yeah, and as a reminder, I just want to tell you we're not giving medical advice, but we're just rather sharing our open and honest feelings and thoughts as we live with Louis Body, dementia and folks right now. I always say now for a shout out to some of our supporters. Well, this week I decided just to thank everyone. I thank everyone who's donated to Patreon and all the ones who donated to GoFundMe. Without you all, we couldn't do this thing. Yep, so y'all, let's get this week started. It's just me and Linda today having a fireside chat, as I call them, when it's just the two of us.
Speaker 1:Yeah, I like that name that you came up with. So there's one big thing we want to share with everybody, and then we want to get to some things that are going on with Curry. So do you want to start telling what's happening on September 14th of this year?
Speaker 2:And September 14th this year, everyone needs to come to Canaan, kansas. We're having a big Louis Body, dementia I'm sorry, louis Buddies, dementia and caregiver meet up for the first time. We've always all talked about how we wished we could find one location and meet up with everyone. Well, caney's pretty much in the center of the United States, so we're hoping that everyone shows up. We've got so far. We've got people from California, rhode Island, over on the East Coast, out of New York, and we've got one coming from Ireland even to be here.
Speaker 2:So y'all need to sure. Try to show up if you can. That's September 14th.
Speaker 1:Now is that why you moved to Canaan, Kansas, so you can be in the middle of the country and people could come visit.
Speaker 2:You bet you should. I wish that was the case.
Speaker 1:I think you had an ulterior motive, young man, yeah, yeah, but we've just been. We've been talking about this a lot and can't. Obviously Curr lives in Caney. So we're going to and we've been posting about it and we'll keep posting once a week at least the little flyer that goes with the first annual Louis Buddies and Caregivers Meetup. It's going to be from 11 to seven. We've rented the Caney Recreation Center.
Speaker 2:Which is a very nice building.
Speaker 1:Yeah, and it's not a lunch will be served. We'll have water and soda. No alcohol, but water and soda there's plenty of. There are many hotels within a 15 mile radius. I can't Caney, kansas. The nearest airport is Tulsa, if you need to know that. But all of this is on the flyer that we've been posting. It lists a few of the local hotels, but we know, you know, curr and I were like let's look up hotels and I'm like people are just going to Google and find which one works for them. But there are a lot of hotels within 15 miles, yeah, From Caney.
Speaker 2:We have listed some of them on the flyer, some that I know people have used when they've come to visit me.
Speaker 1:So Right, so it's September 14th of 2024. And on the bottom of the flyer we need to watch, everybody will understand we need to know a headcount for the food and we're asking everybody to register by July 1st. And it's $10 per person to help offset the food and the drinks. And if you're driving, on the flyer you'll read you want to bring a dessert? That's great, because everybody, when we mentioned it in our zoom meetings, people were like you know what can we bring? And we're like well, let people bring their favorite dessert that they like to make. You know, that would be really nice. So there's going to be plenty of food. We're going to, you know, have a cater and $10 per person is serves two purposes honestly, to offset some of the food and drink cost, but to Confirm your reservation, so to speak. So we can, we can get a headcount, yeah, and just real quick If you're driving or flying and you want to bring a dessert.
Speaker 2:If you can't do it, if you're driving, there's a really good bakery here in town and it's top notch, I guarantee you. Yeah, what I know you're going, is that the?
Speaker 1:way you get your favorite donuts. No, I get my donuts just around the corner here.
Speaker 2:Oh, ok, ok, I thought you were, which I got my maple donuts. My daughter knocked on the door Seven o'clock day before yesterday and still in her pajamas she had gone, got me donuts and brought them to me. Oh, that's great. Yeah, yeah.
Speaker 1:And feel free to bring Linda some Reese's, but don't let Curry see them. Any Reese's are appreciated.
Speaker 2:No for me.
Speaker 1:You stick to your maple donuts you bet you I may share if anybody else has any.
Speaker 2:You bet you.
Speaker 1:I may share if anybody brings me some. Yeah, but on the bottom of the, the flyer that we've been posting is just on the very bottom, it's very short says complete the registration names of those attending, the state or area you're from and if you can bring a dessert, yes or no, and then it has my mailing address on it so you can send it to me. So we're asking everybody like unofficially we have about 70 people that are unofficial that said yes. So you know we're not going to set it up like a, like a conference where you're going to, you know, register and go, do things and be educated.
Speaker 2:It's more for Just a meet and greet.
Speaker 1:Meet and greet. It's more.
Speaker 2:Give hugs.
Speaker 1:Yes, give hugs and it's. We're going to. You know. We say bring tissues, because it's. It is very powerful when you meet people that you've been on Zoom with for now, for three years, some people we've been on Zoom with.
Speaker 2:Yeah, it really is.
Speaker 1:Yeah, and just sit around and just talk amongst one another and just be in each other's presence. That's the whole idea behind it. So again, it's September 14th of this year.
Speaker 2:I will say my doctor will be there In case you all have any questions. We also have the local pharmacist. He has three pharmacies and he also owns the clinic that my doctor works at. Okay, he's pretty up to date on Louie Bode to mention. So is she. She's got several patients with Louie.
Speaker 1:Yeah, yeah, yeah. It'll be great for them to meet other people. I know you said your doctor's inviting other Louie patients. That is it a he or she? I don't remember now.
Speaker 2:Yes, she is.
Speaker 1:She is Okay. Sorry I can't remember, as I know you switched Anyway, so we're pretty excited about it. We can't wait to see everybody and we'll keep posting the flyer once a week on our pages. For those that don't always go to the page every day, it's under the announcements right Up top.
Speaker 2:Yes.
Speaker 1:Yeah, it's also up there. The way we made it is that you can print it. You have all the information right in front of you the day, the time, my contact information, my phone number, my email, the address of the place, so that you, if you print it out, you'll have it with you. You don't have to keep searching on the page.
Speaker 2:You can take a screenshot of it, send it to the lender or me, either one.
Speaker 1:Yeah. Yeah, that's a good idea. Yeah Well, they have to send in their registration fee, right, but feel free to send me a message through Facebook Messenger, or you can text my phone or send me an email. I can get an unofficial list going. It's kind of what Kara and I did. We just were spitfire on who we knew. It said that they would come, and then we'll finalize things after July 1st just to get.
Speaker 2:If you all don't have the $10 right now, when you want to go ahead and send in your registration, just let me know. Yeah.
Speaker 1:Yeah, so that's going to be a pretty amazing day for sure. And we did it at 11 am to 7 because we'll probably serve lunch around 12-ish 12-30. And then people can come and go. If you need to go rest, and then you could come back. Yeah, so it should be a pretty powerful event. So that's the first thing we wanted to share. You know what we've been up to behind the scenes, but I would like Kerry to talk about what he's going through right now. And we were talking a little bit before I hit the record button and I said to him I said to you, kerry, you know you're in a Louis dip right now. I am, yeah, you are.
Speaker 2:I'm probably in the biggest dip I've ever taken.
Speaker 1:So I wanted people, I wanted you to share with people because you know you have been sharing on the pages always how you feel when you know Louis got a hold of you, so I think you've been. It's been at least two or three weeks that he's got a hold of you. It's been about three weeks now. So first started with the sleep problem, right, yeah.
Speaker 2:Yeah.
Speaker 1:Not being able to sleep while you are having those intermittent hallucinations again.
Speaker 2:Yeah, I was.
Speaker 2:My hallucinations had come back, I was seeing weird things. But then it got to where, when I and I wasn't able to sleep at the time, I would only sleep like an hour and wake up, and wake up another hour and then sleep a little bit longer and then wake up again, and I never was able to nap during the day. During that time I was pretty much deprived of sleep. But what happened? I would wake up and first off I wouldn't realize which house I was in which I talked about before. I didn't, didn't recognize this house and I wasn't sure if it was our old house we sold in 2006 or the home we had before that. But I just knew that this house did not look familiar to me and I would have to sit there a while and finally think about it. And then I would realize, yeah, okay, I'm at this new home in Canary, kansas. But that's a really weird feeling to wake up and not know where you're at. And then I got to waking up and I would, haller and my mom, and my mom passed away in 2006. But yet I knew this wasn't the house we lived in, but yet it seemed like it was. When my mom died. It seemed like a house I lived in when we were growing up. I was Haller and mom and she never would come to. Then I'd Haller at dad and he never would come. I would sit there a little bit and then it would finally dawn on me well, dad died in 87 and mom died in 2006. I hate to say this, but during that time I never thought of Linda. All I could think about was mom and dad. That was really weird.
Speaker 2:Then I got to where, well, I've gotten real unsteady on my feet. Last night I fell twice in the bathroom. I bent over to empty my urinal and I always bend over and put it down in the bowl so it doesn't splash out. But when I've been over, I just kept going. Luckily, the mode is right up against the bathtub, almost, so my head went between the commode and the tub and I couldn't get my hands to get me up out of it. I really had to fight to get up out of it. I finally got up out of it and I stood there for a couple of minutes and I thought, okay, I can do this Once again. I've been over empty the urinal and dad gumed if I didn't go down again. This time Linda heard me and she came in there. But by that time she got in there, I was working my way back up, so we let that pass and I was so unsteady that she was having to grab ahold of my shirt from back. Even though I stand up awkward, I was still so unsteady she was having to grab ahold of me and to keep me from falling. That happened all day yesterday, all day. Then she decided she was going to sleep in the living room with me instead of in the bedroom. I kept telling her no, we don't need you to, I'll be fine.
Speaker 2:Well, about five o'clock this morning I got up. Well, first off, about three o'clock I got up and I was able to get outside and smoke a cigarette and come back in on my own. Then, about five o'clock, I needed to get up and go pee. So I got up and I didn't use my walker, I just came on through the bedroom door and the dog Goldie is normally laying there. So I thought I saw her laying there. So I went to step over her and I just fell over.
Speaker 2:When I fell, I hit my head on the shelving that we had there and got a big old knot on my knee now on the side of my knee where it hit. But I couldn't get myself up. So about that time Linda hollered at me. She said where are you? I said I'm in here on the floor. So she came in and helped me get up and then proceeded to chew my ass for not using my walker and for not waking her up. But I took a pretty good fall, took a pretty good fall this morning and I'm still sore from it and I'm still real unsteady on my feet even with my stand-up walker.
Speaker 2:But I tell you it turns out, my doctor gave me diazepan, which is Valium, and what I had done? I had taken it and my pain pill together and last night my daughter called and said you're not supposed to do that. You can't take them within two hours of each other. So you either have to take your pain pill and wait two hours and take the Valium, or take the Valium and wait two hours to take the pain pill. I'm hoping that's all it was.
Speaker 1:Yeah, we were talking. We usually talk a little bit before we start recording and it sounds like it. Yeah, I don't know, Just make sure you have Linda. Call her again. I mean, I'm no medical doctor, but I would think you wouldn't want to take anything after the Valium.
Speaker 1:Because, the Valium is supposed to be in your system for a while. I personally would give you the pain pills first and then, two or three hours later, I'd give you the Valium. But I said to him do you think it's that combination of medicine that made you unsteady? And it could be. We're hoping that's what it was.
Speaker 2:I'm still unsteady and it should be out of my system by now.
Speaker 1:Yeah, Well, you took a fall and you know you're going to be hurt tomorrow, because it's usually that two days after you fall you start to feel so good.
Speaker 2:I've got 10 milligram Valium, I've got five milligram Valium and I've got some of the five milligram broken in half.
Speaker 1:Yeah, yeah, maybe go back to half.
Speaker 2:I'm going to start with the two and a half, the half dose of the five milligram now and work my way up. Yeah.
Speaker 1:Yeah, and I know we always say start slow, low and slow. But you know you weren't taking this med before, but you know you were out of it for a bit, so even that little bit could cause your body that you took too much at first.
Speaker 2:Yeah, I hadn't had a fall like that since I fell back here when I fell out in the gope pen in Rio Medina before removed. Right, you know.
Speaker 1:So when you knocked your head, did it knock any sense into you this time?
Speaker 2:No, it didn't.
Speaker 1:I knew you were going to say that.
Speaker 2:Yeah, no, it didn't do anything like that.
Speaker 1:You saved Linda from getting the frying pan for Right.
Speaker 2:Wacking up.
Speaker 1:Well, she yelled at you the time before you fell. You know the second time you fell, but she won't bless her heart.
Speaker 2:She wanted to sleep in there so I could wake her up when I needed to get up. Yeah, I just couldn't see waking her up because I didn't think I needed her you know Right. Turns out, I did need her.
Speaker 1:Oh, are you going to wake her up next time?
Speaker 2:Yeah, definitely.
Speaker 1:Yeah, yeah. It's just especially right now, when you're in this Louis dip, it's better to be, safe. Better be safe. And you know she could fall back to sleep and if she needs to catnap during the day, she will.
Speaker 2:Yeah, yeah. You know, but the good thing is, it stopped me. It stopped me. When I wake up now, right now, I haven't wondered which house I'm in, hmm, so that's a good thing.
Speaker 1:I traded it off for thinking, calling mom and dad. Do you think it's because she's we have to call them my mom and dad. When you wake up, you see her first thing, you think it's because when you wake up, when you open your eyes, she's right there on the sofa.
Speaker 2:Yeah, probably so.
Speaker 1:Yeah.
Speaker 2:Well, it's really weird to wake up and I sit up in my chair and get up on the edge of it and call her mom, because I think mom should be there, mm-hmm. And then, when she doesn't answer, I holler at dad and he should be there, right, even though the house doesn't look familiar, you know. And then finally it dawns on me no, this is our house. So then I holler at Linda. It's really weird.
Speaker 1:Have you had that ever before where you called out to mom and dad?
Speaker 2:No no.
Speaker 1:Yeah, I think I-. Well, you've been, you've moved, and we all know that that's hard for anybody to get used to, let alone somebody with Lewy body, because you got used to your old place and-.
Speaker 2:Yeah.
Speaker 1:But I know, Linda, you have that reclining sofa so she can get good sleep out there with you.
Speaker 2:Oh yeah, she was stressed out on that reclining sofa.
Speaker 1:Yeah, and just you know, don't fight that, because it's you saying, okay, sleep out here is not gonna stress her out as much as her being in the bedroom, Like-.
Speaker 2:Yeah.
Speaker 1:I can imagine her like very lately sleeping.
Speaker 2:Oh, it really stressed her out when I fell. She said it. I fell real loud, that's why I woke her up, yeah.
Speaker 1:Cause you have a hard head.
Speaker 2:Yeah, I hit them, shells going down.
Speaker 1:Did you leave a dent?
Speaker 2:On the shells Nah.
Speaker 1:Yeah, I'm just. I don't know. I thought maybe you hit the wall first. Leave your facial imprint.
Speaker 2:But yeah, it's been a rough day today. Even I'm still very unsteady on my feet.
Speaker 1:Yeah, and this is another like are you sure you wanna record? And I've learned my lesson when he says he wants to do it. And, to be honest, you know, we said we're gonna do it at a certain time and then it so happened that my daughter was on her way home, so I texted him let's do it like a half hour later, cause when she walks through the door the dogs will bark, and he was down to sleep. So you know, which was fine, you know, I knew you needed your sleep. And then I know, once we're done you'll crash. So that I will.
Speaker 2:You gonna crash again.
Speaker 1:Yeah, strangely, that makes me happy to know that this has taken it all out of you Cause very good show time. I mean, I'm sure you can all hear it in his voice that he's super tired, which is, I mean, monday you looked great in Zoom. This is, I mean, this is the whole. And Friday you were pretty tired. And then Monday, like you, you're, you know you look like I don't know what normal looks like, but you know more lively and you're even in your facial expressions, and then this just shows Louis, he's all over the place. He can be all over the place.
Speaker 2:Yeah, he's kind of kicking my butt this week. Yeah, I think it has for about the last three weeks total. Yeah.
Speaker 1:Yeah, yeah, and I know your mind is on. I know you're very excited about the September event.
Speaker 2:I am I'm very excited about it.
Speaker 1:I can't wait to see everyone. I am asking you, on behalf of all of our listeners, to not push yourself, so that you know you're going to be well rested for that when the time comes.
Speaker 2:Well, I really got excited yesterday. There's a widow who lost her husband about a year ago. Her and I used to. She used to ask me questions through messenger and I would answer her back and we did this all the time and it was different things her husband was doing and saying. And she contacted me yesterday and she lives down here in Pompkins City, oklahoma. I had no idea that's where she lives and so she's about an hour away and she said she'll be there, so that I'm excited to finally be able to meet her?
Speaker 1:Yeah, it's going to be. It's going to be pretty amazing. Yeah, and even when with the event, if you think you know, preliminarily thinking, because we know it's six months out.
Speaker 2:Yeah.
Speaker 1:And we're going to be close to flyer once a week If you want to say you know we'll be there and I'll jot your name down and of course I'll follow up to make you know, to make sure as time gets closer. You know that would be great and we're going to have name tags on. You know name tags that can be made for everybody. So when you get there it's just going to be food and friendship.
Speaker 2:Yeah, and just looking forward to it and hugs.
Speaker 1:And hugs.
Speaker 2:Yeah, a lot of hugs.
Speaker 1:Yeah, lots of hugs, lots of Reese's, reese's for me. What's your favorite? Yeah, what is your favorite? Maple donut, besides maple donut, because you can't Reese's. No, you got to watch it.
Speaker 2:Reese's or a zero bar. I love zero bars.
Speaker 1:What is a zero bar?
Speaker 2:Oh, man, I love them.
Speaker 1:I have never is that before my time.
Speaker 2:I've loved those things since I was a kid.
Speaker 1:You know I'm going to look it up right now. What is a zero bar?
Speaker 2:It's white chocolate with kind of a chewy nugget inside. It's so good.
Speaker 1:Do they still sell them?
Speaker 2:Yeah, I thought they'd quit making them, but we found them up here at the Dollar General Store.
Speaker 1:There you go. Hit the dollar store on your way if you're driving down.
Speaker 2:They're really good.
Speaker 1:Look, I just looked it up real quick. I've never even heard of them, but made from her shape, they're really good.
Speaker 2:I'll take those over Reese's any day.
Speaker 1:That's great. That's what I was looking for. Why do they call it a zero bar? Zero bar was first launched by Hollywood brands Candy in Minneapolis, minnesota, in 1920 as a double zero bar, and it was renamed in 34 as zero. The name double zero was implied to suggest the zero bar was cool, as in low temperatures.
Speaker 2:They're good, they really are good.
Speaker 1:That's okay, there you go, dollar General. Is it going to be cheaper than mine then? Yeah, definitely. We're going to put buckets there, reese's, and then zero bar.
Speaker 2:Yeah, instead of bringing, they can just make contributions.
Speaker 1:Right, instead of bringing money just put in the candy. I think that would be hilarious. You know I did that on the day before Halloween. Well, the kids knew from September 1, that Reese's were my favorite and I would always tell them listen, if you really got on my nerves, you're going to know I'm going to. You got on my nerves because I'm going to tell you you got on my nerves and because I never yell. This is my tone all the time. I said but if you want to make it up to me tomorrow when you come in, you slip me some Reese's and I'll forget it ever happened.
Speaker 1:And then the day before well Halloween day, I would put out a big pumpkin and I'm like remember, you all can't eat all that candy. Bring in as many Reese's as you can and give them to me. And I don't even. I think the last time I Well Halloween, the day after Halloween, would come in and there was a big round table and where the kids came in and I would have a bowl of dry ice going and then a big bowl for all the Reese's. The last time I did it it was like I can't remember the exact number like 549 Reese's I got. Oh, wow, and I have pictures of it and I'm like, check or treat me to some Reese's. I had to sign up as they were leaving to remind and I wouldn't eat them all, I would freeze them and then when we did, like when the kids balanced chemical equations, it was hard for them and then, as they would get it, I'd give them a Reese's.
Speaker 2:Oh, they're good if you keep them in the refrigerator.
Speaker 1:Yeah, and at the end of the year I mean 500 and some I would have at the last day of school. I'd give them all out.
Speaker 2:Not me. I'd have kept them all.
Speaker 1:No well, I did keep some in my filing cabinet, top drawer, and all the teachers knew where their stress food was. It was there, you know, and they would just walk in my room, not even say anything, to the drawer and grab one. I'm like gotcha.
Speaker 2:I do want to stress about our meetup here in September. Folks, if it's the cost of a motel that's bothering you, just send me a message and let me know. If it's the $10 that's bothering you, send me a message and let me know. Just send it to me through messenger. And we'll see what we can do.
Speaker 1:Can I ask them to send it to me? Sure, yeah, just because you know when Louis got you, you don't need to worry about keeping track of things, yeah.
Speaker 2:So you know, but we want everyone. We want everyone who can. They can. Yeah, that's the thing. Yeah, I don't want the cost of a motel to stop someone. I know how it is.
Speaker 1:Yeah, because we can. We have some people in the group we know can help out with that kind of thing yeah and yeah, it's going to be pretty powerful and hopefully it's, you know, the first of many and you know even if Kareen and I can't keep doing it every year and it'll come to a point where we can't you know one of us can't do it that it'll be kept going.
Speaker 1:You know, yeah, and you know it could move around, it could stay in Caney or you know, it's just. There's a lot of things that could happen with this meetup, but we're hoping, you know.
Speaker 2:I think every one of us, I think every one of us in this group, has said at one time or another I wish we could all meet up in one central location, and this is about as central as you're going to get. Yeah, I know we've got people coming from California and we've got people coming from New York, you know and. Florida. We've got people coming from Florida.
Speaker 1:Yeah, and we've got people from both coasts and all because we had brought it up. Curry brought it up in our support group before we were ready. Yeah, I was ready, you know, and everybody was throwing out their suggestions. But someone said you got to make sure the hotels are, you know, handicapped equipped if needed that's. I don't know of any hotel. That's not nowadays, but that's where you know, you guys Google and there are some, like I know.
Speaker 2:I think they just about all have to have.
Speaker 1:Yeah, it's by law yeah.
Speaker 1:And then, because we were going to start listing prices and everything, and I said, carrie, you know what people are going to go on, they're going to Google, they're going to find what works best for them, either price wise or, as, like my sister-in-law, she was a hotel snob she wouldn't stay anything less than a five star, which is fine. You know you can afford that and that's what you. You know her work paid for it. But you know me personally, as long as there's no bugs in my bed and there's a shower, I'm good to go.
Speaker 2:There's a real good, clean motel in Coffeeville and the good thing about them is they have a diner kind of in their parking lot. It's just right next door to them. Yeah, excellent food.
Speaker 1:That one is. That one is called Travel Lodge Coffeeville. Hey, I was in Coffeeville once, yeah.
Speaker 2:Yeah, how many days was I there? Yeah, you were.
Speaker 1:That's where the hospital.
Speaker 2:Was that they?
Speaker 1:dumped me.
Speaker 2:You were a higher price motel. Yeah, I was there for like four days of free food and I know Ann Marie and James stayed at that Travel Inn and they gave it a thumbs up oh, great, great. And then we all went over there and ate. It was really good food.
Speaker 1:Oh, okay, all right, there you go. Yeah, got to get them as a sponsor. Yeah, yeah, cause I know I've organized events like this before and like for science teacher conventions and things like that, and normally you could like get them to block out rooms, but I think there's enough within a 15 mile radius that people can, you know, do their own research and find what works best for them. Yeah, but, but anyway, there's a main thing. We were just going to come in and talk, come on, as we can talk about the Louis buddies and caregivers meet up. But I said to Kerry you know you want to talk about what's going on, and of course he said yes, and so before we stop, I'm just going to touch on the spot, because you're going through a Louis dip right now. What would you tell others that are going through a Louis dip?
Speaker 2:And just hang on tight and hope you come back up. You know, I would hate to think that I'm gonna stay like this. I hope I bounce back up, Because I'm not enjoying this at all. It's so unsteady on my feet you just can't imagine.
Speaker 1:Well, you've been in a lot of pain. You've had a lot of Parkinson's pain lately.
Speaker 2:I've had a lot of Parkinson's pain and that's why I told my doctor yesterday and she just kind of gave me the look like there's nothing I can do, you know.
Speaker 1:Well, if you are, you ride the roller coaster better than anyone. I know because you've been, you've had the dips before and you've I mean you went, I mean you dipped with COVID and you came out of that. Yeah, but you just have to promise me that you're gonna rest and let you know somebody wants to come visit. Just say, you know, give me a week or so, and I know you love when people come visit, but I did, I really did.
Speaker 1:Yeah, but you know what tires you out, which is tires you out and a mental care.
Speaker 2:And Miriam came back over the day before yesterday and it was great to see her and she brought her son, her oldest son and her youngest son Right, and we had a real good visit. We really did, you know, and that's a long way. She travels about three and a half hours each ways. Yeah, you know, but I'm glad she does it.
Speaker 1:Yeah, her husband and her were on a podcast, I think in our first year, and Matthew also had, at the end, had ALS mix in with everything. So but you know what I'm saying, right, Like, just you know, give yourself time to rest.
Speaker 2:Oh yeah.
Speaker 1:Cause I know where you live and I know where your frying pan is.
Speaker 2:Well, the good thing is, the garage got painted and the storage building got painted, and those were my last two projects. It's great.
Speaker 1:Yeah, that's why we didn't record last week, I think, cause you were, you had company and I totally get it, you know when it we're painting the garage. When you have somebody cause. You know most people know I've been working on my basement now for four months, more than since I moved in, and that's not going wood. Well, 90% done. But when people can do it, you got to do it you can't.
Speaker 2:You know, it was very important to me because the insurance company would not insure the garage or the storage building until they got painted Right. And we got a lot of stuff stored in both of them, you know, and it's almost catch fire or something you know we really needed insured Right.
Speaker 1:Yeah, I totally understand, you know. You know we've I think our listeners understand you know with Louis and life, and we're not doing this as profession doing the best we can to help people, and we'll keep doing it the best we can, cause I have a really, really good idea for our next hopefully our next recording that I need to work on today. But I am thankful that I stretched this out a little bit with you so that you know you're he always he show times everybody at the caregivers on here that you know, you know what that means, and his brain is firing at all cylinders right now. Did you hear that? Yeah, oh, well, um, and I know don't anybody take well, this doesn't come in out for a couple of days, but I won't text you for the rest of the day cause I really want you to sleep. So turn off your, keep your ringer off for a little bit.
Speaker 2:Yeah.
Speaker 1:I'll text your wife and ask her to remind you later to turn it back on. So thank you for pushing yourself today, curry, cause you know I know you do it. Cause sharing what you just shared is going to be helpful for others who have Louie.
Speaker 2:You know to know them, I appreciate you to opportunity, first off, to come on and talk about our get together in September. That means so much to me I just can't explain it. But you know I want to meet. I've always said I want to meet these people in person and now I have a chance, so I hope everyone does come and can come.
Speaker 1:Yeah, I think, I think we're going to have a good turnout, Curry.
Speaker 2:Yeah.
Speaker 1:I really do. All right, let's end this so you can go get some rest.
Speaker 2:Yeah, folks, that's all we have time for this week. Remember, you can email us with suggestions on what you'd like us to discuss on a future episode, or you can just ask any questions you have. We'll sure do our best to get the best answer for you.
Speaker 1:Yep and we post the links to the podcasts on both the Louis Body Roller Coaster and our journey with Louis Body Facebook pages. And if you're interested in helping as a volunteer and advocate or you want to you think you'd come into town the day before the event in September you can send me an email saying, hey, you need help setting up the tables or tearing things down after seven. That would be great. I think we're going to have a lot set up and tear down just tables and chairs and clean up after the food. But anything that you think you can help with, whether it's the event or if you've lost someone with Louis and you want to be a Louis Buddy to another caregiver or to somebody with Louis, there's a lot of ways that you can really help out.
Speaker 2:And also I forgot to mention. I told a couple of people that I know are bringing their RVs. They can stay here at the house, but if we have more people bringing RVs, we have the local pharmacist. They're building a new pharmacy right next door or it backs up to the old one. The old one, the mansion center and he said there's no utilities there, but they're more than welcome to park there.
Speaker 1:Oh, that's great.
Speaker 2:Yeah.
Speaker 1:Well, people in RVs, the generators.
Speaker 2:If they need it, it's going to be September, so it's probably going to be really nice there and I've got a generator if anyone doesn't have one and they need to use one.
Speaker 1:Yeah, Well, they usually come on board with the RVs yeah. Yeah, that's great. I didn't know that. Did have information, but that's great. You know, if you have an RV and drive it, we got a place for you to like the Walmart parking lot. That's usually where RVers can stay for free overnight, although they crack down on that, but that's another story.
Speaker 2:Yeah.
Speaker 1:Anyway.
Speaker 2:Yeah, we'd make room for just about any RVs, mm-hmm. Sounds good, it's a big parking lot up there. The building's already there, they're just going to remodel it. Yeah, but it's got a big parking lot.
Speaker 1:Okay.
Speaker 2:It's all concrete, so All right Sounds awesome. Well, folks, if you want to learn how you can be a supporter of the podcast, just be the episode notes, as we post the information on that there. But, folks, thanks again for joining us and I hope to see you all all in September.
Speaker 1:Yep Until next week. This is Linda.
Speaker 2:And Curry signing off.