Lewy Body Roller Coaster
Lewy Body Roller Coaster
Welcome to 2025!
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Welcome back podcast family.
Speaker 2:Yes, welcome back y'all.
Speaker 1:Yeah, it's been a minute, huh Curry.
Speaker 2:It has, it sure has.
Speaker 1:It's been a minute to much longer for me to figure out the buttons again. Just another quick shout out to everyone for your continued support and patience and happy 2025.
Speaker 2:Oh yeah, Is this the first one we've done in 2025?
Speaker 1:It is.
Speaker 2:It is, oh, my God.
Speaker 1:Yeah, because we've been posting the, we decided to post the.
Speaker 2:CND.
Speaker 1:Yeah, the CND Life Science is one, because of everybody in the group, that's right, we got a lot of messages. Yeah, so we just decided to do that and then jump back in a couple weeks later.
Speaker 2:Yeah, so thank you all for being so patient and supportive of us.
Speaker 1:Before we start today's episode, we want to remind all of our listeners that it's important for us and for you and for everybody to share with the medical community and those who are affected by this disease, who are affected by this disease. So if you're listening for the first time and someone in your family has been diagnosed or you have been, share the podcast with your family members and every medical person you see, because we've been finding out, there really should be a team of people, just like when someone is diagnosed with cancer, they have that team. So there really should be a team of doctors working for LBD patients. So even your eye doctor or your gynecologist, you know it's good that they know the whole person and not just the one area they're treating. So please feel free to share the podcast name. They can just Google it with all those people.
Speaker 2:Most definitely Also.
Speaker 1:Also, I want to remind y'all that if you'd like to be a guest on our show and share your story in hopes of helping others, just contact lindsay zapula or myself through facebook messenger or our email, which is louisbodyrollercoaster at gmailcom, because we'd love to have you on the podcast yep, and we don't always say this reminder, but remember, if you want to be a supporter of the podcast, there's two ways you can do it patreon, if they're all in that, under the features on the facebook pages, you can do patreon, which is a weekly or one time, or the gofundme link. Remember, curry and I do not use any of the funds for ourselves. We use it to defray the costs of the editing, the monthly podcast hosting site, which went up because we're using AI now, which is good. That really helps us as we're doing this. Thank you again everyone for supporting us, those who have supported us and those who are just listening for the first time.
Speaker 2:Yeah, and as a reminder, folks, I just wanted to point out we're not giving medical advice, we're just sharing our open and honest feelings and thoughts as we live with Lewy Body Dementia. Now, what I usually do, folks, is I give a shout out to all of our supporters and I do thank each and every one of y'all, but I've got some here that I want to give a personal thank you to, and that's Kristen Moss, laura Julecki, fred Pounds, lana Babcock, lori Birdie, craig and Ann Marie and James Hoogie. Okay, so let's get this and James Hoogie. Okay, so let's get this weekend started. Linda.
Speaker 1:Okay, Just like Kari says, when it's just me and him, we call them our fireside chats. So since it's the beginning of the year and we took the holidays off which we really appreciate everyone allowing us to do each year I want to let everybody know how you're feeling, Curry, you can share a little. You're still on hospice, which that could be a whole topic. After our meeting yesterday that someone was denied hospice because they were not incontinent or falling, and you saw me wanting to jump through the screen because Jim was neither of those and he was on hospice. Mm-hmm, and you're. You haven't really fallen since you've been on hospice, right? Not?
Speaker 2:since I've been on hospice. I feel I think I've failed twice since I've been on hospice.
Speaker 1:Mm-hmm.
Speaker 2:But it's been a long time.
Speaker 1:And don't mind me asking are you incontinent?
Speaker 2:Oh yes.
Speaker 1:Okay.
Speaker 2:Not all the time. Not all the time, but I constantly battle it.
Speaker 1:Yeah, yeah, so it's been. Yesterday's meeting was pretty frustrating because we know the person could really use the help, but oh definitely yeah, it's those guidelines. Just, you know, like sticking Lewy body in a box, you know you have to have these checked off to be considered Lewy body, or, like hospice, you have to be, you know, fallen and cotton, I don't know.
Speaker 2:I think they need to just keep calling around to different hospices. They're in a big enough area.
Speaker 1:Yeah, and it's just very frustrating because hospice is handled by Medicare. Medicare is a federal program. Why is hospice requirements different in every state?
Speaker 2:Yeah, I don't know. I know one of the best things that ever happened to me was put on hospice.
Speaker 1:Right, it's really helped me out. Yeah, I mean, it's really. You've come a long way. So let's back up a little. I think one of the last times we recorded we talked about you self-medicating and did yourself in a little bit and wound up in the hospital. And now Linda, your wife, is controlling all those meds Definitely, yeah, which has helped, but I think it was at the end of December when you started having hallucinations again. You want to share about that?
Speaker 2:Yeah, my hallucinations started coming back, not the very, not the scary ones and not the real, vivid ones, but just the mild, mild hallucinations have started coming back. You know, I'd be outside and I'll well. For one instance, one of our neighbor's houses I looked at at night when I had the dogs out. I saw this great, big old picture window in it and they had the curtains open and I could see people walking back and forth inside the house.
Speaker 2:And the next day I was out there and I looked over there and the house doesn't even have a large picture window in it, it's just got a window with the air conditioner unit stuck in it, you know, and I've seen a guy out back uh, as stupid as this sounds raking leaves up and sticking, putting them in a golf cart, you know. And I walked around the building behind our storage building where I couldn't see him, and I walked around the storage building so I could see him, and there he was raking leaves and putting them in a golf cart of all things, you know, and so I didn't want to spook him, so I walked back around to where I was in the first place and then he was gone. Just ones like that, you know, and I still see the little black blobs running to and back from the house. But at least, like I said, they're mild hallucinations now. So that's, that's, that's good.
Speaker 1:Are you still having them today?
Speaker 2:Yeah Well, I haven't had one yet today. No.
Speaker 1:But yesterday I mean it's still yeah.
Speaker 2:I still have them on a regular basis.
Speaker 1:Okay, and when you're having them, do you realize you're having them?
Speaker 2:For the most part I do Now, like the guy wrecking the leaves. He was just real, as ever to me, you know. But yet once he disappeared I realized it was a hallucination. You know, and some of them I realize they're hallucinations, but I don't really get it until I'm out of it, if that makes any sense no, it does, because you said you went out later with the picture window and you looked across and you were like there's no picture window.
Speaker 1:Wouldn't it be great if they were something? Something goofy just popped into my mind. I'm trying to figure out how to say it without it sounding bad. I don't know if I could do it. I might have to share it offline. Curry, go ahead. If you were seeing someone breaking the leaves, that maybe wasn't a man, like some bodacious babe or something like that, I don't know. Say that to your hallucination next time, if you know you're having one be like hey, where's your wife?
Speaker 2:Probably Anthony.
Speaker 1:I know, yeah, I don't know why stuff like that pops in my head. Um, yeah, so you know, you've you've been going through all that and still come into the zoom meetings and you have, oh, did you hear that ding? Okay, sorry, somebody just sent me a message on facebook. Um, so you've been going through all that and hospice has been coming, which I remember when jim had palliative care coming, which everyone on louis body is eligible for, and it just became overwhelming for him because it was like PT, ot, you know too many people coming. How are you adjusting to? I don't think you have that many people coming, but how are you adjusting? Like, tell us what your hospice experience is like in a week.
Speaker 2:Oh well, the uh, the aid that helps me get in and out of the shower. She comes on Monday, wednesdays and Fridays. The nurse comes on Tuesdays and Fridays and then normally the caseworker. She comes either Wednesday or Thursday, and then the preacher either comes either Wednesday or Thursday. Wednesday or Thursday, and then the preacher either comes either Wednesday or Thursday. There's usually one day out of the week that we don't have someone hear from Okay, other than that, they're here every day.
Speaker 1:Well, we know, when Curry comes to his meeting, when he doesn't have his dinky butt anymore yeah, you just know you've had a good day with your aide. Oh yeah, we don't really know everyone listening which just you know. He sometimes comes late and is like my aide was here and we're like, oh, she washed his butt. Yeah, that's just something we mess around with Curry doing so do you think it's?
Speaker 2:It's been a big help to me and Linda.
Speaker 1:But you don't think it's too much.
Speaker 2:No, I don't. I've gotten used to them now.
Speaker 1:That's great, that's great. So how often does the nurse come?
Speaker 2:The nurse comes twice a week and the aide comes three days a week.
Speaker 1:And you said the chaplain comes once a week and the aide comes three days a week and that you said the chaplain comes once a week.
Speaker 2:The chaplain comes, and then so does the caseworker.
Speaker 1:Okay, how long do they stay and what do they— About an hour hour and a half. And what does the chaplain do?
Speaker 2:He just sits down and we just talk like we're neighbors.
Speaker 1:Oh, that's nice, I'm just curious. I'm just curious because I heard that Turn your phone off. I got you the first one of the new year.
Speaker 2:I know right.
Speaker 1:You did really good last year. I remember, of course. Wait, I want to find my phone and turn mine off before I get in trouble. I was just curious, because Jim never had that experience. By the time the chaplain was coming, it was time to give him his, you know.
Speaker 2:Yeah.
Speaker 1:Well, chaplains don't give last rites, but you know to pray for him. Chaplains don't give last rites, but you know to pray for him, mm-hmm. So they don't—we don't talk about anybody's religion on the podcast, but—.
Speaker 2:Right.
Speaker 1:So the chaplain doesn't make you feel like he's there pushing any religion on you. He's just kind of there, like you said, as like a neighbor, to sit down and see how you're doing any religion on you.
Speaker 2:He's just kind of there, like you said, as like a neighbor, to sit down and see how you're doing. Well, on the first time he came out, he asked me. He said now, do you want me to read scripture to you, quote scripture to you, when I come? And I said no, I really don't. And he said okay, and he just comes now and checks in with us see how we're doing. We talk about the weather or grandkids or everything like that, you know, and then at the end we say a little prayer and that's it.
Speaker 1:And you can choose. Now I'm just imagining there's some people that you know wouldn't want to bring the religion into it, but it sounds like you can just kind of tell them what you want to do and what you don't want to do.
Speaker 2:Oh yeah, you can, you can. You know, that's what the caseworker, social worker is for. She makes sure that everything's going okay and she asks you how everyone's treating you and all that good stuff. Yeah, she's really good.
Speaker 1:So if you are uncomfortable with the religion and the praying part, you could just tell the caseworker listen you can just come and be another support. But nope, okay, I mean it's great that that is offered to you.
Speaker 2:Yeah, it really is. It's been real good for me.
Speaker 1:Yeah, I'm very happy you're having a positive hospice experience while you're still able to have the experience, because sometimes when we had the podcast on which I was thinking, we probably should play that, the episode we had a retired hospice nurse on.
Speaker 2:Oh right, Angie Vanjie.
Speaker 1:Yeah, vanjie, we should replay that, because I think what we're finding is some people are just now finding the podcast, so they kind of start where they find us kind of thing Right. I don't know.
Speaker 2:I think that would be a good thing to replay it.
Speaker 1:Yeah, and you know we have like 150 episodes, which is mind-boggling.
Speaker 2:Right.
Speaker 1:You know, for somebody to go all the way back. I don't even know when that was first or second year. We should really go, we should. It should be funny. We should figure out how we can play our first episode and we react to it as we're hearing it. See how far we came.
Speaker 2:We didn't even have any and then our first three episodes.
Speaker 1:Yeah, we didn't even have any of it. And then our first three episodes yeah, we didn't even have video. Then, I don't know, I had some young college kid helping me. It was yeah, we should do that. That would be a funny episode to do and be like what the heck's going on there?
Speaker 2:I know right.
Speaker 1:Anyway, I'm happy that you're having that great experience with them and for you sharing about your hallucinations which you do. All the time on your page you say how you're feeling. I want to say the majority of the time you could be struggling, but in the last couple of days you posted something that was so uplifting to everybody. You want to share what you posted, oh.
Speaker 2:I watched today, saturday, thursday. I woke up and wasn't really with it that morning, but by noon, man, I was having a great time. I mean a wonderful day. I felt good, still having my pain. It's still about a five on a scale of 10, but that's the best it's going to get. But I ended up having Thursday was the best day I'd had in probably two or three years. And then yesterday I woke up, felt the same way, had another good day, same thing.
Speaker 1:And then today, I wake up and I the same way had another good day.
Speaker 2:Yeah, same thing, yeah. And then today I wake up and I can't stay awake.
Speaker 1:Yeah, because he's like I'm ready to record, I'm up, I'm like all right.
Speaker 2:Yeah.
Speaker 1:You know we'll record in an hour and then an hour comes, I'm like hey, yeah, and I'm still asleep and he's sound asleep.
Speaker 2:I'm still asleep.
Speaker 1:And he's sound asleep. I'm like yeah, I went sound asleep, Let me go do some chores.
Speaker 2:Yeah.
Speaker 1:Yeah, but that's great. That's what and we talked about this in our Zoom yesterday is. That's what's so crazy about this disease. You can go and just for those that are having these days where Louie has just got a hold of you every now, and then you're going to get these kind of you know the days you've had the last couple of days and we knew yesterday when you came into Zoom like when you come into Zoom you can tell how you're feeling. Like now you're starting to look a little tired.
Speaker 1:I'm just going to let you know, but your body's probably crashing from having those two really great days.
Speaker 2:I mean, they were good days, they really were. I mean.
Speaker 1:Even your wife said right.
Speaker 2:Yeah, even Linda and the hospice. See, yesterday the nurse didn't come on Friday because she took the day off. So the head of the hospice, instead of coming on Friday, she wanted to come on Thursday, and she couldn't believe how good I was doing that day either.
Speaker 1:Yeah, but I don't. Did you tell her this isn't me every day.
Speaker 2:Yeah, oh yeah, she knew it Okay.
Speaker 1:Yeah, but hopefully it was a learning experience for her too, if she's not dealt with Lewy body patients.
Speaker 2:Well, her dad passed away from Lewy.
Speaker 1:Okay, so she knows, that's good, that's sad I didn't mean to say that's good, but that's sad, but it's good that she is aware of it.
Speaker 2:She's familiar with it, yeah.
Speaker 1:Wow, you really lucked out with getting people that.
Speaker 2:I really have.
Speaker 1:You know that, know it or that doctor you had. I had a good doctor in.
Speaker 2:Texas. When we first got here I got hooked up with a good doctor and then she left and I had to go find another good doctor and she saw me after I fell and was in the hospital and went to go have an appointment with her and she said someone asked her there. Linda may have asked her. Something was said about what would we do, what should we do with him falling all the time? And she just said hospice. And that just started the whole thing.
Speaker 1:And there's been no word of you're having a fairly good day, so you're doing too good to keep hospice.
Speaker 2:Uh-uh.
Speaker 1:No, that's good, Because I'm assuming you're going to be evaluated like every six months.
Speaker 2:But yeah, she evaluates me every three months.
Speaker 1:Okay, okay, yeah, and somebody. That was one of the discussions I just want to share with everyone. If you're listening and you haven't joined in one of our Zooms, I really encourage you to join in because it really has. You've quickly become one of the Louis family members and, like we entered Zoom yesterday, like Kurt and I are usually on first and I, you know, we talk for a few seconds.
Speaker 1:And the way we started. Yesterday's was me I start letting people in, or you start letting people in and I'm still rattling off of why does my husband have so many flashlights everywhere?
Speaker 1:look, there's like men, men he's like, and I started asking all the men like, why do you have so many flashlights? And I mean I showed curry. There's eight of them sitting next to me now and I found three after that meeting. I'm like, why do men? And so you know. So we come in and we're usually laughing about stuff like that. But then it just became such a great discussion and that's usually what you know the first few seconds. If somebody's new, we let them introduce themselves, or you can just listen and have your camera off if you want to try it, because I know a lot of people are nervous the first time they get into Zoom. We don't pressure you to put your camera on or even to talk if you don't want to, but soon you get sucked into the family.
Speaker 2:I tell you one of the and this is so stupid, but it's true One of the things that made me know I was having a good day. Normally when I shave, I buy the disposable razors, but they're three blades, you know, and they last a long time. But normally when I shave I normally have five o'clock shadow by the end of the day. But I had ordered a new razor to come with 19 blades on it from Timu.
Speaker 2:And I've been afraid to try them because, man, they're from China, they're going to cut me like crazy. But I went ahead and opened them up and started using them Thursday and I still got the closest shave I've had in a long time. I mean, just little things like that make you feel good.
Speaker 1:Yeah, yeah, that's what the moral of the story is. That was not a plug for Timu.
Speaker 2:No.
Speaker 1:I haven't. I don't even know. I've heard about it. I don't even know.
Speaker 2:I've heard about it.
Speaker 1:I don't even yeah, Too much other things going on to worry about what Timo is or isn't doing or what it is. But I've heard you get cheap stuff. But that's great though. But do you normally shave yourself or does the AIDS?
Speaker 2:I do.
Speaker 1:Do the AIDS? You do.
Speaker 2:Yeah, I do yeah.
Speaker 1:Yeah, I do, yeah, so go back to our Zoom meeting yesterday and this whole hospice topic that we're talking about, that whole evaluation. Like somebody said, they evaluate you I thought it was six months every three months, as if what you're going to get better. You know, like there have been people, we know people have been on and off hospice, you know, and it's like what's the criteria that's keeping them there for you and if you graduate?
Speaker 2:I don't emulate ambulatory. I'm not very good at.
Speaker 1:Yeah, yeah for moving around. Yeah, yeah, yeah. So you have them, so there's, but you are every now and then you were falling. So that was like the big sign for you. But I forget somebody in the group was saying how frustrating it was that you were evaluated and they felt like the medical, you know, whoever the hospice was at that time and whoever's evaluating that, like at three months, you could be Louie better, you know.
Speaker 2:Oh yeah.
Speaker 1:And if you are not, like if you stopped falling and having incontinence issues, would they? They'll?
Speaker 2:just keep me on.
Speaker 1:They'll keep you on. But if they like, if a certain person doesn't fit into the hospice check boxes, I would hope that they would go down to palliative care, so that you're still getting some kind of care, but that's not AIDS. Palliative care, so that you're still getting some kind of care, but that's not AIDS. Palliative care doesn't have AIDS, it's more.
Speaker 2:Yeah, they said that I could have chose to go on in-home health care and it would have been through the same group of people, the same company.
Speaker 1:But since my doctor said hospice instead of home health care, yeah, wait, but they do offer home health care as well. Where they come to your house.
Speaker 2:Uh-huh.
Speaker 1:Yeah, okay, so that's not part of hospice.
Speaker 2:No.
Speaker 1:Okay, all right. And what I said right before we started is or I may have said it while we were just talking why is hospice different than every state when, when they're paid by medicare, which is a federal program, medicare or medicaid, I I don't get it. I mean that's right yeah, I mean, it's hard enough, when you need something like that, to have to now go research what you know, what is covered and not covered.
Speaker 2:Yeah, and let me back up. They take care of my pain medication as well. They're the ones who put me on morphine and they're the ones who put me on the fentanyl pain pack.
Speaker 1:Yeah, yeah, and that's really helped.
Speaker 2:They had to take me off my. What it was, what made me fall, was taking Valium? We think yeah, and so they changed that part of my meds up. I still get all my regular meds, my maintenance meds and all that, but they take care of all my pain meds now and my anxiety pills.
Speaker 1:Well, it was your fault for thinking that your Valium was Skittles.
Speaker 2:I know right.
Speaker 1:Told your wife to put it in that box. We got you and lock it. Yeah, yeah, yeah. Well, at least they found out what you know, what that was.
Speaker 2:Yeah.
Speaker 1:And I mean even Amy from Ireland who yesterday, like everybody, was just so happy to read your post Thursday and how great you were feeling. I would have, if I was your wife, Linda, I would have whipped out my honey-do list and made you do some of the things on the honey-do list. Did she make you do any?
Speaker 2:No, she didn't.
Speaker 1:I'm going to get all sorry. I'm going to get all over. When you guys are having a good day, whip out that list.
Speaker 2:Yeah.
Speaker 1:Get to fixing something.
Speaker 2:Right, right Fixing. No, she just let me enjoy them.
Speaker 1:Yeah, well, I was happy that she realized that you were having a good day too, which I know made her very happy. Yeah, you know, because I know over the holidays you know people coming and going that probably wore you out and people with everybody out. Yeah, we've heard that from a lot of people, but everybody seems to be, and I'm talking about the people in our support group now. Everybody seems to know now and their loved ones know there has to be a separate area that your loved one with Louie can go when it gets to be too much conversation and you got two little grandbabies now, right or great?
Speaker 2:Great grandbabies.
Speaker 1:Dang, you're. How old are you? You're old.
Speaker 2:No, no, I'm 65.
Speaker 1:Wow, Great great. You have great grandbabies.
Speaker 2:Two great grandbabies.
Speaker 1:Wow, that's crazy. I don't even have one.
Speaker 2:I tell you what this turning 65, it hurt me more than any other birthday I've ever had.
Speaker 1:Why.
Speaker 2:I don't know, I just never. I can't believe I made it to 65. I always. None of the men in our family ever lived past 65. Most of them died in their 50s.
Speaker 1:Okay.
Speaker 2:So I was expecting to die, be dead, before I was 53. You know, and here I am, all of a sudden, I'm 65.
Speaker 1:So it was a positive birthday, it was a good birthday, not a.
Speaker 2:Oh yeah, it was a wonderful birthday. I had a good birthday.
Speaker 1:Yeah, yeah, yeah.
Speaker 2:Grandkids were here. The grandkids was here. My daughter and her husband and their son was here. Yeah, it was a wonderful day.
Speaker 1:Yeah, that's good. I keep seeing the commercials about when you're 60 and over you need to get the shingle shot and all this and I'm like, oh my God, I'm getting close there.
Speaker 2:I'm dreading it, the 60 number, I'm now going on 70.
Speaker 1:Yeah.
Speaker 2:Wow.
Speaker 1:Technically, if you round up, you are 70. Yeah, you know, learn that in math, we'll go with that You're 70.
Speaker 1:Yeah, I'm dreading the 60. I don't know why, and just I think when you're in your 50s you can still lie and say I'm like 53 and get away with it. I'm like ugh. In a few years, when I'm 60, I'm like ugh, but I don't know why. There's commercials. I keep hearing them. It's like subliminal messages. It's coming, your 60th birthday is coming. Make sure you remember these things. I'm glad that that 65 is a good birthday for you.
Speaker 2:Oh yeah, and I'll tell you another thing, knowing I turned 65, I've been post-diagnosed. I've been eight years since I was diagnosed. I'm going on nine years now.
Speaker 1:Right.
Speaker 2:It'll be nine years this year. Boy, that's another step yeah. Yeah.
Speaker 1:Yeah, because you just broke that five to seven year thing that everybody writes about Five to seven, or two to 20.
Speaker 2:Yeah.
Speaker 1:Just don't listen to, don't take what you read as far as the time that you.
Speaker 2:No, don't take that prognosis seriously. Throw it out the window.
Speaker 1:Yeah, I mean take it seriously that you have something, but not the timeline that it's on. I think it's a mindset, it's all mindset I do too.
Speaker 1:Well, part of it's mindset. Yeah, you know, because I, I think I don't know I I want to go back to just encouraging, if you're a new listener, um monday and mondays and fridays at 11 30 to 1 eastern time, we do, we do a zoom, I know it. You didn't hear that ding, but I'm sure. Sorry, andrew, my son's going to have to. Somebody just texted me on the computer, not on my phone. Curry, my phone is off.
Speaker 2:I was getting ready to get on you.
Speaker 1:I know it's just when you go to the Zoom. You may come in there feeling really crappy, but you're going to leave laughing. Yes, we do talk about some serious stuff and people share like, hey, I'm having this symptom. And yesterday we talked about how there was a person in one of our Facebook groups whose husband, I think he fell and they took him to the hospital and they gave him Haldol right away and he hasn't been able to wake up.
Speaker 2:Yeah.
Speaker 1:And whoever told that story, if you could see the faces, everybody was like oh my God. And then I said I started to binge watch ER because it was 30 years ago that was on and there was one part where someone with dementia came in and I guess, living with someone who had dementia and being around people with dementia, like I knew right away the storyline, what was going to happen. This guy has dementia and he was agitated. First thing that doctor said is give him Haldol. Yeah, and I'm yelling at the tv like it was 30 years ago. I'm like, oh my god, the worst thing you can do right, especially for lewy body people.
Speaker 1:Yeah, and you know, I I think that gentleman has other issues going on that caused him to go to the hospital, but he, he's still not awake, you know. So one of the things we really talked about I keep going back to the Zoom meeting, because I just thought it was such a powerful one is have your doctors put on your chart that you are allergic to Haldol. Yeah, because then they will not give it to you because you can't say, yeah, I'm going to say somebody said you can't just.
Speaker 1:There was somebody, a medical person, in the group yesterday and they said you can't just say I don't take it because I don't like the way it feels or I think it might affect my memory. They're going to give it to you if it's not on your chart it has to say allergic to yeah, it's on all my charts.
Speaker 2:I'm allergic to give it to you. If it's not on your chart, it has to say allergic to. Yeah, it's on all my charts that I'm allergic to it.
Speaker 1:It's on the hospital.
Speaker 2:It's a doctor's office. Yeah, so this is if they always give me a little red bracelet.
Speaker 1:Yep, if you have Lewy body or you're a caregiver, listening, call the doctor's offices and just don't wait until your next appointment because you could have a hospital incident between then. Like, get that put on the chart because they don't care if you say you don't want to take it. If it's not written as an allergy, they're going to.
Speaker 2:They're going to give it to you.
Speaker 1:Yeah, and you're agitated. We had somebody on the podcast last year who was sent to the ER and then her husband went to go feed the animals or something, and then she had a hallucination and they gave her. You know, yeah, so it was just a. That's the kind of stuff that happens in our meetings, like it was just so powerful, I mean. But we're always laughing, um, when we come in and when we leave, cause it's just, it's just become a, it's a family that you want to be around, if that makes sense.
Speaker 2:Yeah, and I want to go ahead. I want to say something here in a minute as soon as I find it real quick. I got to look at it real quick.
Speaker 1:Okay.
Speaker 2:Yeah. It's going to take me just a second here.
Speaker 1:Okay, would you like me to sing? I'm not very good at it, though. Go for it. You and everybody else does not want me to sing. That's my son.
Speaker 2:I just want to say one thing. There's a lady in our group who's had a really hard time, and Mary Jo, if you're listening, I'm so glad that you're having a lot better time now and things are going to turn around for you. You've had a rough few years and now everything has turned around for you, so I'm tickled to death.
Speaker 1:Yeah, and she has Louie right.
Speaker 2:Yes.
Speaker 1:Yeah, it's like. I think that's why, when we were recording today, I said I really want you to share about your two good days, because, yeah, you're going to have those crappy, crappy, crappy days, but every now and then you have this bright day. Come your way.
Speaker 2:Yeah, when your bad days outnumber your good days, it's one thing, and sometimes it seems like it can go forever. It seems like mine has. And then Thursday, like my wife even said, she hadn't seen me feel that good in a long time and I hadn't felt that good in two or three years probably.
Speaker 1:Yeah, I mean you do do podcasts, curry. Yeah, I mean, that's the whole you got to. We said you have to patent or not patent. Is it patent?
Speaker 2:Patent, the phrase you know you still have a lot of good life left.
Speaker 1:Copyrighted. Copyrighted Still have a lot of good life left after diagnosis.
Speaker 2:Yes.
Speaker 1:And you could do a lot of good for the world and the people behind us. That's what I think you and I are doing, so other people don't have to struggle as much, all right, well, we just wanted to jump on real quick and really thank everybody for their patience, and every now and then, we're going to be uploading an old episode, since this is like year five for us, which is crazy.
Speaker 2:I know right.
Speaker 1:Technically year four.
Speaker 2:Whoever would have thought that a phone call from who I thought was a crazy lady would end up like this?
Speaker 1:And now you're stuck with me forever.
Speaker 2:Yeah, you can't get rid of me of. He can't get rid of me. You're like I got a little sister yep, yep, yeah and yeah it's.
Speaker 1:You know I like we have I I meet with um several women who are in our support groups before who lost their husbands, and the other night we were talking I've just got like I have five new girlfriends that I know I can call and they understand what I'm going through with the grief. You know what I mean.
Speaker 1:And somebody said the other night if it wasn't for Lewy Body, none of us would have met. So just if it wasn't for COVID, we probably wouldn't be doing Zoom or a podcast. Yeah, so you know. When bad things are happening, you know you can turn them into a positive.
Speaker 2:Yeah, I'm glad you came up with this idea.
Speaker 1:Some days I'm like what was I thinking? Like today, when I had to figure out the buttons again. I'm like, oh, it's been a while Curry, I've got to try to hit the right buttons. Anyway, we just want to jump back in. We do have some people lined up to start new interviews for the new year, so happy 2025. Yeah, definitely.
Speaker 2:Y'all check your Facebook Messenger. Linda's sending out messages to the people who said that they wanted to be on the podcast, so we're trying to get hold of you now. It's been a while, but y'all are hung with us, so just check your Facebook Messenger request. Yep, but, folks, that's all we have time for this week hung with us, so just check your.
Speaker 2:Facebook message request. Folks, that's all we have time for this week, remember, you can email us with suggestions on what you would like us to discuss on a future episode, or you can just ask any questions you have, and we'll sure do our best to help you get the best answer.
Speaker 1:And always remember that we post the link. Curry, post the link of the podcast on both the Louie Body Roller Coaster podcast Facebook page and our Journey with Lewy Body Facebook page and if you're interested in helping as an advocate or a volunteer, please send us an email. I want to give a shout-out to some volunteers real quick. We have Julie who every day post a positive, inspirational message. Um, we had she goes under East garden who volunteers on June. If she really helped out with uh things for the meetup, julie also, I think Julie and somebody else is helping her to send people birthday messages when it's your birthday.
Speaker 2:Right, yeah.
Speaker 1:And it's just me and Curry and we are very thankful that people have stepped up.
Speaker 2:Sam and Megan.
Speaker 1:Sam and Megan, and Dory who's helping with the, and Julie again who's helping with the Saturday meeting. So there's a lot of things that we can still help people, even if you have Lewy body, if you want to volunteer to be somebody to call somebody that's newly diagnosed and just like like our friend Tom Larson, like he's, he came in like hot on that first meeting Like he was such denial and now he's the, he's the guy we have call people when it's new because you know it's stressful in the beginning and it's hard to accept and yeah, so thank you to everybody for all the volunteers.
Speaker 1:We've missed naming anybody. Just know, um, we Just know we're grateful for all your help.
Speaker 2:We sure are. I want to thank everyone, everyone who's helped support us, everyone who listens to us. As a matter of fact, I meant to point out to you, Lyndon I forgot this last time we've posted the three episodes of the CND Life Services. This last time, we've posted the three episodes of the CND Life Services. Mm-hmm, I always post the podcast in a total of 42 groups and I had people in those other groups commenting on it this time, several times this time. So people are listening.
Speaker 1:Oh, and they were asking. Yeah, they're asking questions about it. Wow, wow, that's good. I didn't realize you did that yeah um, I was trying to pull up the stats real quick of the podcast, but okay I just know it's I don't know um all time is 62,885 downloads. Wow, Like who would have thought.
Speaker 2:Yeah.
Speaker 1:Yankee and a Southerner. Differences work people, yeah, but anyway, all right, that's all we have time for, as Kari said, and if you want to learn about how to be a supporter of the podcast, please see the episode notes or at the top of the page under featured. I think it is on the Facebook pages.
Speaker 2:Yes, okay, folks, thanks again for joining us.
Speaker 1:Until next week. This is Linda.
Speaker 2:And Kari signing off.