Lewy Body Roller Coaster
Lewy Body Roller Coaster
Curry Update
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welcome back podcast family yes, welcome back folks okay, fingers crossed, curry. What would? We should really put together a blooper with me trying to push the right buttons as usual. Anyway, just another quick shout out to everyone for your continued support and patience with us.
Speaker 2:Yeah, so thank you all for being patient and supportive to us while we're still trying to get caught up here.
Speaker 1:Yeah, I'm just going to tell everybody that Curry looks really tired today, so you're probably going to sleep when we're done this.
Speaker 2:Most likely.
Speaker 1:Yeah, and we always lately have been asking you to just share the episode with your family members. If you're listening, because you have a louis body or you have someone with louis body, um, it seems like people find us and that's where they start. So if that's you, there's so many amazing because we just played the three-part hospice, uh, replayed it because it was it's been a big topic in our support groups so we were like we need to play that again because that was a pretty powerful one. But anyway, we just want to thank everybody again for your patience. Like Curry and I just mentioned and yeah, you all know Louie, louie, and Mother Nature seems to be taking a hold of you, curry, sure does.
Speaker 2:Yeah, also, I want to remind you all that if you'd like to be a guest and share your experience with others, just contact Linda Zappula or myself through Facebook Messenger or through our email, which is louiebodyrollercoaster at gmailcom. We'd love to have you on the podcast, or through our email, which is louiebodyrollercoaster at gmailcom. We'd love to have you on the podcast. And we do have a bunch of people ready. Just been little small things keeping us from getting it started so far. But yeah, we do have others ready.
Speaker 1:We're going to share about that and, as always, we post the Patreon and GoFundMe links at the bottom of the episode notes and they're under the I think it's events or announcements. Nate page at the top of the two Facebook pages. And please remember, Cara and I do not use any of the funds. The funds are there to help people, to help with the podcast cost, but also to help people. So we really appreciate everybody who has become a supporter.
Speaker 2:Yeah, and as a reminder folks, we're not giving medical advice. We're just sharing our open and honest feelings and thoughts as we live with Lewy Body Dementia. So now I want to do something that we always do. I want to give a shout-out to some of our good supporters. You're all good supporters, but I just like to give out shout-outs to some, especially each week. This week we've got Lori Birdu-Craig, ann and Mark, ann Marie and James I'm sorry, ann Marie and James Boogie, carol McNeely and all of our other supporters. We appreciate the heck out of y'all.
Speaker 1:Yeah, I'm just jumping with Erica G Skye, sharon Hammond, ellen Gordy I think it is Linda Minyard, eben Stewart Ray and Rose Brad Patricia. We just really appreciate everybody's support and, like Curry said, everybody that supported us from the beginning.
Speaker 2:You bet, okay, folks.
Speaker 1:It's going to be a short one today, I think, because we. It's going to be a short one today, I think, because we usually, when we don't have a guest on, that usually means that I want to talk. I want you to share how you're feeling, Curry. So what's been going on with you, with your health? Your hallucinations are back.
Speaker 2:Yeah, hallucinations are back, not real strong. No, they're mild, mild hallucinations, thank God. But I had a lot of soreness muscle pain and joint pain both, and doctors are trying to get that under control. I just upped my fentanyl patch this week to a stronger strength, so maybe that'll help. But, yeah, I'm sorry.
Speaker 1:The patch when they upped it to the next dose. Have you felt any relief from that?
Speaker 2:Yeah, I think I felt a little bit. We just did it two days ago. Okay, I do think it's really helping this time.
Speaker 1:Yeah, do you think it's making you tired?
Speaker 2:I don't know, Something is yeah. Like I said, I went to bed last night and I didn't get up until, according to my watch, 15 until 1. But my watch was about an hour behind, so it was actually 15 until 2.
Speaker 1:Yeah, I was going to find the message that you texted me. Can you believe? I just woke up and I'm like, yes, I can believe it. So you go from having days with no sleep and then you haven't really had a lot of long. Have you had long periods where you slept a lot? Not in a while I used to so just the fentanyl patches, all they've changed with you yes, ma'am well, I think stress might be affecting you too, because we've had a lot going on here yeah, tell them what mother nature has been knocking on your door with yeah, we got a tree out back, that's.
Speaker 2:It's actually three, uh three parts of the tree, huge pieces of tree, and the first one came down and wiped out part of our chain link fence. And then, about a week later, the second one came down and knocked out more of our chain link fence, and this tree is like 90 foot tall folks. And this tree is like 90 foot tall folks. So the other day Tuesday I believe, it was Linda and I were in there getting ready to shut down and go to bed. It was 1030. And all of a sudden our house shook and we couldn't figure out what happened. So we went outside and looked and the third part of that tree fell and it landed on our house and took out our meter, our electric meter, our meter loop and everything, just laid it all right there on the ground. Geez and uh.
Speaker 2:Luckily, somehow our electric stayed on, though, oh. So we called the electric company to have them come put it back up or do what they could, because I knew they wouldn't put it back up. It was going to be up to us, but anyway, he was going to leave it on and go ahead and put it back up for us. You know out there at 2 o'clock in the morning Until he found out this couple of the wires had been chafed a little bit and he said man, I hate to do it, but I got to shut you all off and that was one of the coldest nights we've had here lately. Couldn't happen on a nice day.
Speaker 1:That heater you have on the porch? Is that it plugged into electricity or is that propane or something it's?
Speaker 2:plugged into electric.
Speaker 1:Yeah, yeah, electricity or is that propane or something that's plugged into electric. Yeah, yeah, that's a bummer, because you could have camped on your front porch with that. Oh yeah, it was propane.
Speaker 2:Yeah, yeah. So anyway, we got all the trees down. All the trees are down. Now it's just a matter of our son-in-law and grandson getting over here and cutting them all up for us.
Speaker 1:Yeah, that's crazy oh it was. Yeah, I mean, we had a windstorm here last month-ish and it knocked out half of our power and it was the half that worked the heater Right. And I literally live on a corner and I'm telling you I'm going to have to videotape. Right now it's still windy. You open my screen door and it just pulls it out of your hand. So that's broken. I'm like I don't even know how to fix that.
Speaker 2:Right.
Speaker 1:Because the wind is just. It's been a really, really windy year so far in our state and you guys have just been getting pummeled.
Speaker 2:Yeah.
Speaker 1:Cold and the rain and the weather, Well, spring's coming, they claim.
Speaker 2:Oh yeah, it's just right around the corner.
Speaker 1:Yeah, it's coming. Yeah, just right around the corner. Yeah, that's coming. Yeah, so you've just been.
Speaker 2:So when all this happens, there was something in plumbing or something you had to do too right our our drain line for our kitchen sink and our washing machine is the pot collapsed and it's it's under concrete, so we're got to figure out another way to go about re-plumbing it, and we just haven't got around to it yet yeah, I just want to.
Speaker 2:I've been going through this like I thought, when we got older, life was supposed to be a little bit easier we thought so too, but the strange thing is, uh, our washing machine had quit on us the same night that, uh, oh my gosh, what am I trying to say? Anyway, our washing machine stopped up on us I mean, quit on us the same night that the sewer line backed up, oh geez. So what I was doing? I had to hook the water lines and run them inside the washing machine and just leave them dripping. Well, linda was doing our laundry at our daughter's house and then bringing the clothes back home to dry them. Well then, our dryer went out, oh Lord. So we still got a broke-down dryer and a broke-down washing machine in our laundry room that we can't do anything with until we get that sewer line fixed.
Speaker 1:Right, it's just like this domino thing.
Speaker 2:Yeah, it just is.
Speaker 1:It's just part of it um, just, people don't buy an old house. I want to say we built our house 25 years ago. Um, you know, we had an architect draw it up, and this is like you do one thing and you're like, just, for instance, my brother said, I'm gonna, I'll paint your first floor, but you know, you're going to have to go up your steps. And I'm like, why? And then, if you go up the steps, you're going to have to do the hallway up there. And I'm like, oh, my God Right, it's just never, never ending.
Speaker 1:And we had so many issues with my brother pretty much said that jim would have gutted the house and started over with electric. Yes, we, when we pulled, we were just putting up new cabinets. So when we put, pull them down, the sheet rock came with it, and so it was cabinet, sheet rock, stone wall, not a licking ounce of insulation, which makes sense why my house is so cold. And he was running a. He was running. What he did was just put on on new wiring. There was a junction box, a steel, a metal one, behind the wall, with wires that weren't even capped and they were live. We were like we don't even know. So that I mean we had inspectors coming on and the house is much safer. But he went to find this one line to the switch for the outside and he followed it up in the ceiling and he just didn't even touch it hard and it came through the ceiling. So when they ran that the ceiling was already up.
Speaker 1:When they ran that the ceiling was already up, so they just poked a little hole, put it up there, and then they stuffed it with tissue and painted it. It's just nonstop stuff like that.
Speaker 2:That's a funny thing. You talk about no insulation in your house. We've we found out. None of our exterior walls have insulation in them, neither does our attic.
Speaker 1:So they're going to come here march 26th and insulate everything yeah, you're lucky that's the same here, like I literally can see the nails where the in the room, like when I go look up in the attic yeah, I don't know, it's, it's just, it's just been. I just want it to be done now.
Speaker 2:We're just you know it's been a lot. We're just kind of taking it in stride and doing what we can when we can.
Speaker 1:Yep, yeah, it's hard not to let it get to you, yeah, when it's so many things and I know I talked to you about getting tradesmen to come in and give estimates once they realize you don't have a man with you, right they? Take advantage of you try to anyway one guy wanted $67,000 for my kitchen and they take advantage of you. Try to yeah. Anyway, one guy wanted $67,000 for my kitchen and plus flooring, plus appliances.
Speaker 2:And I'm like oh.
Speaker 1:Because in Jersey Jim built me my dream house. I had a 12-foot island in that kitchen Maybe doing that one over with 67, but I said I don't even have 12 foot in my kitchen right now. And then two out of three told me the wall between my kitchen and dining room was not load bearing, and it clearly is. But I will say one thing. I don't know if I shared this with you when we pulled the cabinets off first of all, the house was built in 1954 and that's the year Jim was born. And then when my brother pulled the cabinets off the wall they're all sitting in the kitchen.
Speaker 1:And I walked into the kitchen and I just froze because on the back of every cabinet it said Jimmy. And I said did you write why? Like I know what to do? And he's like I guess the guy named Jimmyimmy put these in. So that was like freaky um. So I'm trying to be patient, um, and get this place where I kind of feel like it's home, because I'm still my rv feels more like home than anywhere. But I'm gonna. I'm getting ready to sell it. So if anybody's looking for an RV, send me a message. It's an 80.
Speaker 2:There you go.
Speaker 1:What is it? 80. Oh gosh, it's a 2018 Winnebago Sunstar 29 VE. Totally redone inside, but you've been in it.
Speaker 2:Yeah, it's a nice motorhome.
Speaker 1:Yeah, it's very homey and cozy. So that's catching you up with me and Curry what's going on. I am glad you're getting some sleep, yeah me too.
Speaker 2:I was getting very little sleep the last month or two, right, and so it kind of irritated me today when I slept so late.
Speaker 1:You're not used to it.
Speaker 2:I had some things I wanted to get done and now I put them off another day.
Speaker 1:Yeah, it's always tomorrow. Yeah, that's, you know, it's always tomorrow.
Speaker 1:Yeah. So we just thought we'd jump on and you know, update where we are, both of us with everything. But I also wanted we thought it was important to talk about caregivers this week. It was a pretty big topic that we discussed this past Friday in Zoom, because a gal came in who's caring for her mom and she's new into it and it's just I'm going to say you hear from every as a caregiver, you hear from everyone. You have to take care of yourself, because if you don't take care of yourself, you can't take care of your loved one. And I just I know if you haven't watched the news, is it Gene Hackman? Is that who passed away?
Speaker 2:Yes.
Speaker 1:And they just found out that his wife passed away first, like 10 days before him. Right, she was probably cleaning up rat poop or something. It was some disease that had to do with that.
Speaker 2:Spoon to virus.
Speaker 1:Yeah, and I didn't know he had dementia. I don't know if they I think they said he had Alzheimer's. I'm not sure, but they said he was pretty advanced, so he probably didn't even know.
Speaker 2:Didn't even know she was dead.
Speaker 1:Yeah, missing, and the poor couple of the pups were still in their cages and they were lost. But it was amazing that when the girl came in this last week how the caregivers just even those with Lewy body that were in the group just really wrapped love around that girl and loved her. Stress that you need to take time for yourself as a caregiver, I will say, easier said than done. Sure, I, if I like I had to go to Kansas to do that. The filming, the guilt I had of leaving Jim behind, it was really hard. So I had trouble with the self-care I mean I would take, take walks like that was my go out and, you know, catch my breath, but um, I'd say, if you can, for sure I think.
Speaker 1:I think it would have been easier for me if I was still in new jersey to give myself self-care because I moved myself to a place I only knew, my son and his wife, but Carla Pryor, who's in the documentary which they connected with AARP to show it this past week, and some people couldn't get in because they weren't expecting 2,500 people more than that to try to watch the film at the same time, which is pretty amazing. So what does Linda do for herself? Your?
Speaker 2:wife Linda. Wow, she really doesn't Right. When she's sick she still gets up and goes. You know, she just takes it all in and just keeps going. Really I'll tell you something that did happen to us, talking about the caregiver. Friday morning hospice was here and I got my shower and then the nurse was here and she did everything she does, and then I mean they couldn't have been out of the door three seconds.
Speaker 1:Can I say it? Yeah. And his wife said to him let me ask you something. Yeah, I wrote it down. What's that mean, when she says that?
Speaker 2:Usually that means I'm in trouble. When she says well, let me ask you a question, normally I'm in trouble, and that's the first thing that hit me was oh my God, what have I done? So anyway, she said do you remember anything about 3 o'clock last night going out to the van? I said no, I don't why are you talking about? She said well, you went outside and were smoking, and then next thing, I knew you came in and you're looking all through all your pockets and everything.
Speaker 2:And she said I asked you what you were doing. You said looking for the van keys. And she said she jumped up and said van keys, what are you doing with the van keys? I said I don't know. I don't have any idea why I was out there and I didn't If she hadn't told me I was outside. You didn't even know you were outside, didn't know I was. Yeah, you know. So she's hiding the van keys from me now with the chocolate and candy, just to keep from anything. Actually, what if you'd gotten in the car, the van and decided to go to the door or something you know?
Speaker 1:yeah, but have you done that before, where you've done something and you have no memory of it at all?
Speaker 2:Oh yeah, I've done stuff like that, but nothing that's major. Has taken the car keys with me.
Speaker 1:Yeah, because you haven't really driven it in a long time.
Speaker 2:I haven't driven since 2016.
Speaker 1:Right right, Maybe you were in the middle of a dream or something.
Speaker 2:Yeah, I don't know, but it sure was weird.
Speaker 1:Well, it's good that she does that. So that's good. And it's also good that you shared for those listening, and we've done many episodes where we talked about once you're diagnosed well, I don't know if the word is beg you to stop driving or just because you don't know what Louie's going to do yeah, that it's just safer if you stop driving. Yeah, and when Jim was maybe a year or two into it which I don't know why I did this I should have just lent. I just sort of just asked somebody to hold all of his power tools because I gave them to his drummer friend and to sell or just give to friends. Now Sarah and I need power tools and we're buying all of them, but I got rid of them because if I ran to the supermarket I didn't want, I didn't want the worry of coming home and he's using a hand saw or something.
Speaker 1:I mean, my older neighbor to the right of us had the beginning of dementia too, and he was like 85. And I ran to the supermarket and came home and him and Jim were standing on the top of a ladder trying to cut a branch that was five feet over their heads. It was like great. I'm like what are you guys doing? Let me call somebody. But I totally understand. Just like with you, no matter how tired you've been, you just want to fix things yourself and you don't want to have to burden anybody else.
Speaker 2:Yeah, where I was going, I have no idea.
Speaker 1:Well, it's good that you put the keys away, and if you're listening and you're worried about your loved one driving with Louie Boddy, that's a good idea is to put the keys somewhere.
Speaker 2:Yeah, I had the garage keys and the van keys. Who knows what I was up to? Yeah, I had the garage keys and the van keys. Who knows what I was up to?
Speaker 1:Yeah, probably no good.
Speaker 2:Yeah, I'm sure.
Speaker 1:So what would you like Linda to do for herself?
Speaker 2:Oh wow, she really needs a day off. She needs a day or two away from me. She really does. But then that's on my right hand saying that and my left hand is saying no, she's happy just doing what she is, what she's doing now. She is and she is. I don't think she would take a day off if they offered it to her well, you would need somebody to stay with you for sure which the hospice said they would do that yeah but she would have to go somewhere with maybe your granddaughter or something like that.
Speaker 1:So hospice would come to the house 24-7. Yeah, they said, anytime Linda needs to go somewhere, they'll come and watch me.
Speaker 2:So, hospice would come to the house 24-7?.
Speaker 1:Yeah, yeah, wow.
Speaker 2:They said anytime Linda needs to go somewhere, they'll come and watch me while she's gone.
Speaker 1:But did they say how long though?
Speaker 2:No, they did say at one time that I could have five days in a rehab facility to give Linda some time away from me.
Speaker 1:See, I know your wife, I would not have done that with Jim either.
Speaker 2:But as far as the stay, they've got volunteers at the hospice that will just come and stay as long as you need them. Yeah.
Speaker 1:Wow, and for her to run the supermarket or something? Yeah, because we know you, if you listen, several years ago, at that time where you tripped over your dog.
Speaker 2:Oh yeah.
Speaker 1:Because you do think you're not supposed to do.
Speaker 2:Yeah, I was catching up with me.
Speaker 1:Yeah, and if you're really tired or you're having what happened the other night with the car keys, yeah, with a stranger in the house, that probably isn't. Oh yeah, I was the same way with Jim and I knew taking a break would have helped me. But for me, the guilt of taking the break, yeah, when we went, I went to Kansas for the filming and I was like ugh, you know just, it was hard, but Manny was with him. Like ugh, you know just, it was hard but Manny was with him. So I knew he was, you know, with somebody he really liked and being taken care of. It's just a thing, you know. But if you can take a break, I would recommend it Definitely, especially with you. When she needs to go to the supermarket, have somebody sit with you so she can go and take her time there, yeah.
Speaker 2:I tell you, anyone who doesn't have hospice, you need to check into it.
Speaker 1:It's available for anyone who has louis and this is coming from a man who's like I don't need that, yeah, but now that you have it, because you don't realize until you get it you know, and remember hospice.
Speaker 1:That's why we played that three part episode about hospice. It doesn't mean you're you're on your last couple days of life, right, you know? I mean you're getting so much help, yeah, and if you're not to the point where you need all of that hospice care, palliative care is the step before hospice and I really wish I would have done that when I went to New Jersey and gotten into a hospice. And I really wish I would have done that when I went to New Jersey and gotten into a hospice agency, because I was like behind the eight ball trying to do it, you know, and then I knew what services they were supposed to provide, which they. You got to go back and listen to that episode because that was a little nuts but I'm happy to hear you're having a great experience with them.
Speaker 2:Yeah, couldn't ask for a better group, yeah.
Speaker 1:Couldn't ask for a better group. So we just wanted to do a quick one today, because you know Curry's been busy trying to fix his house, and me too actually, and I know you're really tired because you look really tired. Hopefully this will put you back to sleep. I hope so. Anyway, that's what we wanted to talk about today, just to catch everybody up and then we're hoping to get back on track.
Speaker 2:Yeah, I hope that's all the time we have for this week, remember? You can email us with suggestions on what you'd like to discuss on a future episode, or you can ask any questions you have, and we'll do our best to get you the right answer.
Speaker 1:Yep, and remember, we post the link to the podcast in both the Lewy Body Rollercoaster Facebook page and our Journey with Lewy Body page, and if you're interested in helping as a volunteer or an advocate, please send us your email at lewybodyrollercoaster at gmailcom. The more people who reach out, the more people we can help.
Speaker 2:Yes, and if you want to learn how you can be a supporter of the podcast, just see the episode notes at the bottom of the link there, and we post all the information there of how you can help support the podcast. Yep, and we really appreciate you.
Speaker 1:Sure do.
Speaker 2:So thanks again for joining us.
Speaker 1:Yep Until next week. This is Linda.
Speaker 2:And Curry signing off.