Lewy Body Roller Coaster

Compulsive Behaviors and New Hallucinations- Part 1

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This week Curry shares how he is feeling and discussed the new hallucinations he is having and how he is feeling overall including not remembering visitors. We also discuss compulsive behaviors people with LBD may have as this was a big discussion during one of the zoom meetings.


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SPEAKER_02:

I hit the right button. Welcome back, Podcast Family.

SPEAKER_00:

Yeah, welcome back, y'all.

SPEAKER_02:

You were waiting so patiently. Anyway, um, just another quick shout out to everyone for your continued support and patience.

SPEAKER_00:

Yeah, so thank you all for being so patient and supportive with us as we try to get these podcasts out now.

SPEAKER_02:

Yep. We have three that this one and two other ones. We're we're in the edit editing phase, so that's good. Um do you want to jump and do um shout-outs to the people?

SPEAKER_00:

Sure. Yeah, now for shout out to some of our supporters. I want to thank the fallen people, and and then Lynn is gonna thank some more, but uh, I want to thank Adele Gilmore, Carol McNelly, Amy Rock, and Julie Salamon.

SPEAKER_02:

Yep, and I want to thank um some of the people I'm gonna thank were part of helping us get uh that quick message out when we were doing that last minute trip to Caney to see Curry, where I realized we're gonna have five to seven people at Louie Body in one spot. So we sent a message to the film director saying, Hey, we have these people here, can anyway you can get a camera crew there so that I can ask like all seven of them the same questions. Um so because of our listeners, Curry, and the people on our on our podcasts, not podcast, Facebook pages, um, you guys help us raise the money in less than 48 hours, which was pretty awesome. And some of those people include Jennifer Nestor, uh, I'm sorry, Cindy Nestor, Jennifer DeFrancesco, Marilyn Stevens, and Maria Turch, Lori Droxler, Aileen Sherwood, Courtney, I'm sorry, I think it's Gorder. I might have I can't read my own writing. And then next episode we'll be sure to make sure we um we got to everybody and did the shout-out.

SPEAKER_00:

So yeah, if we missed you, yeah. If we missed you, we're sorry, we'll get you next time.

SPEAKER_02:

Yep, yep, yep, yep. Um so our goal is to have um ask the film crew to do all the editing. It's not gonna be a like a movie like facing the wind film that we did, Curry. It's gonna be probably something we can attach to the Facebook pages and YouTube. You know, just for people because I asked everyone the same exact questions, and even the camera girl who drove out eight hours to get to us in um where were we? What countr country? What state was I staying in?

SPEAKER_00:

Oh Kansas. You were staying in Oklahoma.

SPEAKER_02:

Oklahoma. See, I just have to ask I don't when you get there. Um I don't remember which state I'm in when I'm visiting you. But anyway, the girl uh drove drove at hours to to help us do this filming, and she was amazed that we asked the same questions. I asked the same question to everybody, and no two people's answers were the same.

SPEAKER_00:

Yeah, she was from Austin, wasn't she?

SPEAKER_02:

Oh, yeah, maybe. Yeah.

SPEAKER_00:

Yeah, pretty sure it's Austin.

SPEAKER_02:

Um and that's you know, I still have I still feel an enormous weight of guilt that even though the the documentary Facing the Wind, if you haven't seen it, you can just type facing the windfilm.com. I think you can rent it for$4.99. Um that my our goal doing that was to hear from those with Louis Body, not just caregivers. And because Jim dying, the film had to take a different turn. So I've I've had this enormous gonna make me don't make me cry guilt that that didn't happen, you know, that it because of Jim and Louie Body taking.

SPEAKER_00:

And Jim and Patrick both passed away.

SPEAKER_02:

Yeah, and just um that happening so fast, I just you know, I was and I didn't just for everybody listening, and hopefully his his wonderful wife Linda, I just assumed Curry was telling Linda everything that we were coming, and I don't know, I you know, Curry because I think you're my Superman and you're gonna always remember everything, and and you know, you've been struggling lately. And um, so I apologize to his wife for not letting her onto the loop to the day before. She was like, What? She's wonderful though. She's wonderful. Everybody smiled. I mean, you did one of your Thursday Zoom meetings in your living room, which was kind of amazing. Now, do you remember that?

SPEAKER_01:

No.

SPEAKER_02:

Yeah, see. Um, you you attend the meetings and you talk like like you are okay, just like you just remember where that girl from the the the film girl was from, and I had no clue.

SPEAKER_00:

Yeah, I can remember stuff. Uh it seemed like I forget what what happens in the morning, and I may forget it for a week or two, and then something will be said that jogs my memory about it.

SPEAKER_02:

Mm-hmm. And how long's that been going on?

SPEAKER_00:

Oh, it's been going on several months.

SPEAKER_02:

Okay, yeah. Now, what do you remember from us? So, what happened for listeners? We were in a Zoom meeting, and uh Tom and Dory had said that they were gonna they want to go visit Curry like less than two weeks later, and I was like, hey, I'll go. And just like that, it was not that we we didn't throw it out to everybody on the Facebook pages because we knew it was a last minute thing. And I don't know how I think we kind of kept it to the Zoom meeting group, the Monday Friday group. Um I think we had like 18 people come. I'm not really sure of the number. Now, what do you remember from the you remember everyone visiting you?

SPEAKER_00:

No, I don't I you know I I didn't remember meeting Tom and Dory from the first get together, and I don't remember meeting them this last time. The only thing I remember about this last time is uh Marnie falling asleep sitting on her own seat.

SPEAKER_02:

Yeah, we had her, well, she did do a lot of flying the day before, and then yeah, and then came um she did a lot of traveling. Yeah, but you know what? Most meetings at some point somebody with Louie nods out if they need to, you know, and and people don't even say anything about it, you know.

SPEAKER_00:

Right.

SPEAKER_02:

Um yeah, she was super tired because she had just flown from Seattle.

SPEAKER_00:

I just thought it was cute that she felt comfortable enough to go ahead and go to sleep there.

SPEAKER_02:

Well, that's the thing. Like we keep saying, you know, nobody should go through this alone. Like you, if you haven't attended one of the support meetings, just come and leave your camera off and we'll say hello to you. And you don't have to say a word, you know, just listen in. Because once I think everybody who has attended once has come back, and it it I'm hoping we do make everybody feel like me, you, and everybody else in the group, like you're just now in this Louis family, and fall asleep if you want to fall asleep, you know. That's right. Yeah, yeah, that's that that was a good point. You know, she just felt comfortable enough because everybody, even though I did meet some people new for the first time, like Marnie in person.

SPEAKER_00:

Um, we felt like I do remember Ro. I just now remembered seeing Ro there. And uh what I remember about her is right when everyone was leaving, she said, I've been waiting to have a cigarette with you, Curry. Let's get one together. And she she got about half of it down and she had to leave.

SPEAKER_02:

Oh, I didn't know that was happening. Yeah, she had to catch a ride. Oh, well, I'm just telling you that where did you say I stayed? What state?

SPEAKER_00:

You stayed in Bartlesville, Oklahoma.

SPEAKER_02:

Oklahoma. So we stayed in Bartlesville, Oklahoma, and it sounds the it's just like it sounds, it's like a very rural country area, and I'm not kidding. There are to go go to the Airbnb, we rented, there are four, like they made the road so it literally, as you were driving slow, it looked like you were going up and down on a roller coaster, right? So coming back from your place, I had Dory and Tom, I think, in the backseat. And I was like, You guys want to go on a real roller coaster ride? And now I was safe because I could see nobody was coming because it was, you know, the back roads. I don't think I ever saw anybody on that road, but man, I floored it and they they caught air, everyone, and Dory left. I can still hear her giggle. She was giggling like she was eight, you know, and and even pulling into the driveway and her getting out of the car I was in uh that we were driving, and she was giggling all the way in. So people did get to go on. I took some Louis people on people on a roller coaster ride, Megan and and Marnie. So had a little fun there. So I would definitely, definitely go back there just because of the roads.

SPEAKER_00:

Um, yeah, there was I I don't remember meeting Tom and Dory even on this last one. I do know they kept they let they left their bowl here that they was giving their dog water in. They left it here. Uh I know that belongs to them, but that's about it. That's about all I remember. I and I wish I could remember. I last time I asked Tom if I hugged him, and he said I did, so I'm hoping I did this last time too.

SPEAKER_02:

Oh, you did. Yeah, you everybody got a hug the minute we showed up. Um yeah. Well, you were on your best behavior, and that's the thing, is with this disease, like even now, I'm gonna text you in a few hours and ask you if you remember we did this. You know? Um But it's new for you though, that you're not remembering things that you were you're doing.

SPEAKER_00:

Or yeah, and and I I'm having a lot more hallucinations now and and delusional periods. I'm I'm having a lot of that going on according to Linda.

SPEAKER_02:

Um, anything new, hallucinations or delusions?

SPEAKER_00:

Uh don't yeah, I actually it is new because uh I I'm I can be sitting in my recliner and she says I talk to people sitting on the love seat and there's no one there. And she said I talked to them just like they were here.

SPEAKER_02:

How long have you been doing that? A couple months?

SPEAKER_00:

Yeah, a couple months.

SPEAKER_02:

Yeah, because I know your hallucinations the last uh time in August, I think we were talking about that. Um that they had come back. Any anything new there are they pretty much the same hallucinations or the hallucinations uh they're still about the same.

SPEAKER_00:

Uh I I'm having them like daily now, you know. Uh, but they're not not bad hallucinations like I had before uh when I was first diagnosed. Well I may see neighbors in their yard when they're really not out there, you know, stuff like that. But uh it's it's hard to realize it's harder to realize what's real and what isn't.

SPEAKER_02:

Is it happening? Because I remember before you were having them, you would kind of realize at some point they weren't real.

SPEAKER_00:

Right. So is that getting harder now? I I have to depend on my wife, Linda, to tell me if they're real or not. Because to me, it's all real.

SPEAKER_02:

And have you had this kind of you know, Louie dip before where you're not remembering?

SPEAKER_00:

No.

SPEAKER_02:

But I'm gonna tell you, you come to the Zoom meetings and people when the way you talk, no one would ever know you're struggling right now. Yeah. Except except for you what you post, you know, on Facebook, which still amazes me that you're able to do that because Jim It takes me it takes me a couple days to get a post out, though.

SPEAKER_00:

It really does.

SPEAKER_02:

It does. Okay. I thought you did a lot of talk texting posts.

SPEAKER_00:

I do talk text.

SPEAKER_02:

Oh, you just don't post it right until well, even a couple days.

SPEAKER_00:

You can go on there and you can make a post and then go to the top left and click on it and save it for later.

SPEAKER_02:

Hmm. I just learned something new. I didn't know you could do that.

SPEAKER_00:

Yeah.

SPEAKER_02:

Huh.

unknown:

Yeah.

SPEAKER_00:

Save draft is what it says. Save draft.

SPEAKER_02:

But the fact that you remember you even started one, you know, that's what it's it's kind of it's kind of crazy you can remember that. You know what I mean?

SPEAKER_00:

Not I have to really concentrate.

SPEAKER_02:

Yeah.

SPEAKER_00:

Uh when I go on the group pages now, it's it's it's really hard.

SPEAKER_02:

Yeah, and I don't mean crazy isn't bad. I mean Yeah. But nobody took that the wrong way. But you know what I mean.

SPEAKER_00:

Yeah, I know what you meant.

SPEAKER_02:

You you are crazy. So that's we've already established that. We knew we knew that from before Louie. But I'm just like you talking now, you know. If somebody came into this Zoom for the first time, they wouldn't think anything, anything's wrong.

SPEAKER_00:

Right, that's the thing. I can I can I can uh sit here and and do like I'm doing, but yet I won't remember it.

SPEAKER_01:

Yeah.

SPEAKER_00:

Sometimes I don't even remember it by the time I get out of this room, and Linda asks me how it was. I can tell her it was good, or I can say it was bad, but she will say, What'd you talk about? And I don't have any idea what we talked about.

SPEAKER_02:

Yeah, and there lies where I didn't. I still feel bad I didn't reach out to her sooner about what you know, us coming there and you know, oh, that's all right. Taking over your porch. Yeah, she did. She's amazing, amazing, amazing. Um, I think everybody had a good time there. Everybody was sitting out on your porch and just talking. And we had Namie and her husband Frank made it from Ireland, which was pretty amazing.

SPEAKER_00:

That was cool.

SPEAKER_02:

Yeah, because she was supposed to come last year, but her best friend mentioned.

SPEAKER_00:

I forgot about that.

SPEAKER_02:

Yeah, yeah, very sweet. It's and and we keep saying this. If you haven't met anybody else with Louie Body, like I don't know how I need to get a hold of the doctors where Jim went. I don't know how the doctors, yeah. The chances you meeting someone else face to face with Louie Body is very slim unless you come to meetings, you know, one of our support meetings, or even you know, the LBDA one, and you make a plan to do that if they live close. But you know, I I don't know if doctors can say how how can they connect their patients without do you know what I mean? Stepping over that line, like yeah, hey, hey Curry, I want you to meet Jim. Well, why do you want to meet Jim? I have you know, that kind of thing. I don't know how to get around that. Uh besides saying if you're listening, find a find a support group online where you can oh, or in person, just drop me right off the screen, or in person. Not a lot of places have um in-person Louie body meetings, but go to a Zoom meeting and like we have I don't know how many we have, like six a week or more now. Um and meet other people with the disease because it's um you can attest to this. It makes I I I believe that you like you meeting somebody else with Louie body for the first time, how did it make you feel?

SPEAKER_00:

I was yeah, you can't explain it. Uh word you don't have the words to explain it. It was just so terrific. Yeah, it still is.

SPEAKER_02:

It's it's um I can imagine, well, for me as a caregiver meeting another caregiver in person, we don't have to say anything and we're saying and we're we're talking the same language. Do you know what I mean? You meet so if you're out there and you're listening and you have Louie Body or a caregiver, you know, try to find somebody with um, we should try to figure out how to. There's got to be a button you can push on Facebook where people can say where they're from so that other people, I'm gonna put down my to-do list so people know what state people are from, you know.

SPEAKER_00:

We've uh gone on the groups three times now and asked people to list where they were from.

SPEAKER_02:

Yeah.

SPEAKER_00:

And then it we get a lot of people answering that.

SPEAKER_02:

Yeah, but the problem is then there's like 10 other posts that day and the chances of people going back. So I'm gonna I'll do some research and see, or if anybody listening knows, you know, gonna shoot me an email at LouieBodyRollercoaster at gmail.com. Um, so it's Louybody Rollercoaster no spaces at gmail.com, if you know. I'll I'll do some YouTube Google searching when we're done. Yeah, because it would be great for people to know if there's somebody like in the next town over, you know.

SPEAKER_00:

I do know uh one thing that's gone on since you left here. Uh my wife's sister uh diagnosed with part, she started having shakes, tremors in her left hand, left arm. And she's been since been diagnosed with uh uh Parkinson's and dementia. And she's been forget forgetting things. She now she's older than my wife, she's 78, I think she is, but she gets around just like my wife does. I mean, both of them get around just great. But uh her sister has gotten real forgetful. Uh and she'll she'll talk about their mama trying to find her their mama, and she passed away in 2010, you know. Uh but yeah, so she's I'm sure she's got Louis body. They just told her it was dementia.

SPEAKER_02:

Yeah.

SPEAKER_00:

Uh Parkinson's dementia.

SPEAKER_02:

So where does she live?

SPEAKER_00:

Claremore, Oklahoma.

SPEAKER_02:

Okay.

SPEAKER_00:

About an hour south of us.

SPEAKER_02:

Well, she needs to be going to your family doctor that you found.

SPEAKER_00:

I know, right?

SPEAKER_02:

You know? Hmm. Yeah, you should share that. I'm sure Linda already shared it though.

SPEAKER_00:

Yeah.

SPEAKER_02:

Um yeah. But anyway, um it's it's just very powerful for you to try to meet somebody else uh with this disease. Let me try to pull up what I want to talk about. And you know, we keep boasting about the support meetings, and it's not for us to say, oh, we had all this many people come because that's not what we're about, even though um like I I think the podcast Facebook page hit 3,500 subscribers or something, and then they, you know, when that happens, they they post it on your page, you know, and great if we were doing it for ratings and all, but it's still it still makes me sad. And we curry and I were just talking a bit before we started. We have almost 72,000 downloads. Um, which is great, but not really. Um, you know.

SPEAKER_00:

Go ahead.

SPEAKER_02:

No, I was gonna say, I'm just thankful people are finding the podcast to listen to and you know, hope it helped hope it's help continuing to help people.

SPEAKER_00:

I'll tell you, it's it's hard for me to explain what's going on with me right now. Uh because I can sit here and just like you mentioned Naimi and her husband coming, that made me remember them being here. But uh if you hadn't mentioned that, I wouldn't have known they were here. So it's it's really hard to explain how my brain is working right now. Uh it just really, really weird.

SPEAKER_02:

Have you had any medicine changes since but this all started? Or no. No. How about your pain? How's your pain?

SPEAKER_00:

I I stay in pain. I'm on a scale of one to ten, I'm about a five.

SPEAKER_02:

Oh, well, that's better than that nine ten you were at for a business.

SPEAKER_01:

Oh yeah. Yeah.

SPEAKER_02:

Yeah, but I know what it's like to be in pain all the time. Um I was also sharing that we have crossed the hundred mark for countries. I think we're at 101 countries. And we're almost at our 150th episode. It's either this one or the next one. It depends on we have three um that we can we can post up. So eventually we'll hit that number. Um, so everybody did we just want to thank everybody for continuing to listen and being patient. And I do encourage people if you're just finding the podcast for the first time and that like this is your first one, go back. Like you can go back and listen to all of them. And I also recommend going back and starting, you know, listening to the ones in the beginning again, because as you're in different phases of this disease, or your loved one is, you if you listen to them before, you're gonna forget what it was about. And because there was a book I was reading about um, I'm not sure if it was Louie Body, but every time I read it, like every six months, it connected with me in a different way, according to where Jim was at the time. That's all we have time for this week. We'll be back next week and continue our discussion on attending support meetings and one of the topics that was brought up at one of the meetings.