Lewy Body Roller Coaster
Lewy Body Roller Coaster
Zoom Meeting: Part 2
This week is part one of a three part series. We decided to ask participants form one of our weekly zoom support meting if we could record the meeting and share with you all so you can hear how a meeting goes, what people share and how they share suggestions with one another for certain symptoms. We hope you can hear the love the people in this group have for one another. We all need to lean on one another on this Lewy journey but also keep laughter in your life.
Listen in as Curry, Tom and Dorie, Ray, Dan and Effie, Liz and Sharon share their LBD experiences..A shout out to all of our supporters! We couldn't do this without all of ya'll. xo
ZoomA shout out to all of our supporters! We couldn't do this without all of ya'll. xo
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welcome back podcast family yes, welcome back y'all just another quick shout out to everyone for your continued support and patience 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 um, we just want to remind all of our listeners that's important for us.
Speaker 2:Uh, the medical community can hear from those affected directly, so they hear from more than one person, because the more we share, the more people are going to know, and the less times people get the nobody. What question exactly?
Speaker 3:the Louis body? What Question Exactly? The more we share, 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, do contact Linda Zappula or myself through Facebook Messenger or through our our email, which is louisbodyrollercoaster at gmailcom.
Speaker 2:We'd love to have you on the show yep, and if you want to be a supporter, there are links in the under the announcements show you how you can help us keep the podcast going. Car and 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 3: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 Lewy 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 have donated to GoFundMe.
Speaker 2:Without you all, we couldn't do this thing. Welcome back as we continue to share one of our monday support meetings that we that we were able to record. We hope, after listening to this three-part series, that you might feel more comfortable to jump into one of the support meetings via zoom. And just a reminder we use the same Zoom link for every meeting and it can be found under the featured portion, under the Louis Body Rollercoaster Facebook page and the Our Journey with Louis Body Plus Megan posts reminders with the links as well. Some have said they've even had their spouse save it on their desktop so it's easily accessible. So let's continue with our friend Tammy as she shares how she's feeling, and then Curry jumps in a little more with his continuing symptoms. Tammy, you want to weigh?
Speaker 4:in. Okay, tom and Dory, I, I just I love you. I think you are a couple that seem to have found just where you need to be with each other. Um, I just I just hold you as a, as an example of where the person with louis body should be and where the support should be, and the fact that she's heading up the support group too but you're able to tolerate each other and know when, most of the time, know when you've tolerated enough. I just think you're a very good example of what we're talking about.
Speaker 2:That's it no, yeah, I agree, like you two are and I, doria and I had a long talk on the phone last week, I think and I'm like you two are so made for each other like just you're just perfect together and and being as I've seen you both and we rented that house together it's the sweetest thing to watch the two of you she has to wear something.
Speaker 5:Oh, she put something on, I don't know what it was, and I said, oh, what are those? And she goes don't you remember you? You gave me, you gave them to me for christmas. And I went oh god, I don't remember that and I hadn't given it, and she borrowed it from the person we were with and she did that just to you know, I know. And then, and I love that, I love that because it's like the sense of humor.
Speaker 6:I love that I know he does and I wouldn't do it if I didn't. I would never do that to someone who would be upset somebody would think that was yeah I shit, but my friend asked us to take our shoes off and I didn't have socks, so she let me borrow these big fluffy socks.
Speaker 1:Oh, that's what it was, and he looked at that and I had just.
Speaker 6:I saw you and yeah, our friend, one of the friends, was said that's really mean and it's not not dumb, it's not no I love that it's funny.
Speaker 2:Yeah, humor is great yes, and I assume we were talking about that. Humor is you know what gets you through it.
Speaker 5:Yeah.
Speaker 6:You know it helps to joke about Louie, I think I mean anything like that. It helps to be able to to laugh at it sometimes.
Speaker 5:Well, it was one of that all the time, but sometimes one more thing I wanted to say to Dan was what about a recovery day? When you're doing things like that, plan ahead, not do too much the day before and not too much the day after, and so you can kind of like that's kind of my schedule.
Speaker 1:Well, we're definitely coming around to that kind of approach. I wouldn't say we've done it on a regular basis, but it's more likely that after something like the Celtics game, Effie and I would look at each other and think about what else we still had to do that night and what was coming up in the next morning and we were like, yeah, that was great, but I'm just not sure if it's worth what we're going to pay.
Speaker 2:So maybe for half half of the game or do the second half.
Speaker 1:Or in any case, knowing enough to think about it in advance, and maybe you can reduce the number of stimulating events that are coming up yeah, that's a good idea, but that's amazing.
Speaker 5:That's a such a great idea to do that with friends, you know facetime important to maintain the social stuff, but I mean anything throws us all so badly. I got food poisoning and it knocked me for a loop for a long. You know, it should have been one day.
Speaker 6:Well, that came on the heels of losing our cat and that threw you off.
Speaker 5:But it's just food poisoning, it just beats you up, you know yeah.
Speaker 6:Yeah.
Speaker 6:I try to pace it. I try to pace things like we're going away, we're going to go to um, visit my sister for her 70th birthday, and normally I would pack the day of if we were leaving late enough or the day before. I want to pack at least two days before so that there's not commotion. You know, I don't want the packing commotion to come right before leaving on the trip and I've gotten into the habit of trying to do that. Think ahead, like you know, space things out a lot more than I would have before, and when we're there, if there's two things in a day, we might only do one of them and we try to you know, and I used to be like when we go to boston for um a doctor's appointment, I would always have tried to tack something onto that, and I don't even think about that anymore.
Speaker 5:It was one thing well, that's, that's good idea, well kari says you can, you can live a good life, but it's it's differently. It's going to be a different kind of life. You know it's going to be different. It's going to be different, but it's still good, it's still great, yep, but it's just going to be different and it's going to be uh, limitations right, which brings me to you car.
Speaker 2:Do you think, because you know you were telling us all this stuff you were doing and what's going on in the house. And then you just do, you think maybe all that was you were doing and what's going on in the house. And then you just do, you think maybe all of that was just too much and that threw you where you are now. You just overstimulated yourself for many days in a row.
Speaker 3:I don't know. I was going to butt in while we go in and didn't. Uh, y'all was talking about uh trying to try and do things not, not, not. You don't do it, you're not doing them right and your spouse has to step in. That's what's been going on with me a lot. There's a lot of stuff I can't, I haven't said right or haven't done right, and then Linda has to come in behind me, you know, and either help me or help me get the hell out of the way. She'll do it, but I don't know if that's what's causing this with Linda or not. I really don't.
Speaker 2:Well, if that's the case, then you've just got to give yourself some time downtime.
Speaker 3:Yeah.
Speaker 2:Like you said, ride it out, ride it out this time. I'm tired of riding time. Yeah, like you said, ride it out, ride it out this time.
Speaker 3:I'm tired of riding it yeah.
Speaker 2:What's the most troublesome to you or annoying to you, is it the fatigue?
Speaker 3:Yeah, the fatigue and forgetting steps when I'm doing something.
Speaker 2:Now did hospice come today already.
Speaker 3:Yeah.
Speaker 2:Did that tire you out more when they come?
Speaker 3:Yeah, it does, but I was able to get a nap in after she left. I got a 20-minute nap in.
Speaker 2:Okay, that's good.
Speaker 3:Yeah.
Speaker 2:Just try not. I know it's hard when and you're probably tired of people saying just let your body rest because it needs it.
Speaker 3:Yeah.
Speaker 2:You know, and hydrate.
Speaker 6:I'm looking at that.
Speaker 2:Hydrate? That was the question I was gonna. That's good. Did they test you for UTI?
Speaker 3:we check me uh Friday for UTI.
Speaker 2:Yeah, now, well, you know, you, you, you have UTIs, like I know yeah.
Speaker 3:I really thought that's what was going on, but test was negative.
Speaker 2:Well, test again today.
Speaker 3:Like my incontinence. It's strange because usually I don't know if I piss myself or not. It just happens, you know, and I'll find it later, when Linda looks down at me and says you wet your britches. You know, and I'll find it later, linda looks down at me and says wet your britches, you know. But this time I felt the urgency and the need to go and it was really strange because it's hard to say you're incontinent when you feel the need and feel the urge to. But I noticed that my incontinence had stopped pretty much. But now, here it is, back again.
Speaker 2:Yeah Well, pee on a strip again today and see. You never know, maybe it, you know, takes a bit for it to go up by the time. I'm gonna unmute you. Nope, you gotta unmute yourself. Sorry, I don't know.
Speaker 4:You're the only one I can't unmute um, I was just interested because of what you said about pee on a strip. I've been really confused lately. Just, I mean, I'm always confused, but more confused than in a different way, like I was. I don't know if I was dreaming or just sitting in the chair, and I was. I thought I was in this group, with a room with a group of people, and they were the people I went to high school with. And then you guys, so 50 years apart, and I was like why are we all together? And I thought that I mean that could never happen. But yet it didn't seem that bizarre, but it confused me. Certain things are confusing me easier than others. And when we woke up I told Jay, I said the Zoom group was talking about these strips that you can get at cbs and you take your own um tests and every time I go to the doctor she does a um test on me. It always says negative, but she always has a hunch and she sends it away and the next day she calls me and says, yeah, you definitely have a UTI. So I did that today and it was like test again tomorrow, you know kind of over, and I said, well, maybe that's like the same thing that goes on with the other one, but there was something else. Somebody said that um that they had in the beginning, and then it went away for a long time and it came back. I can't think of what it was, but that just happened to me.
Speaker 4:I'm finding a lot of my early symptoms are coming back. Oh, this shadow man, tom's shadow man. Yes, everywhere Shadow woman, shadow man, but somebody is always there. I look up at the TV and she's standing there. I look over there and he's standing there and occasionally they move and when something goes by on the floor I assume it's a shadow dog or cat. You know, it's like just like it was in the very beginning, before my hallucinations got really bad and I'm thinking I hope that maybe that part won't come. You know, maybe they won't get really bad, but yeah, that's and that was, you know, six years ago since that happened. So I'm like, why is this coming back? I know this, it does come back, circles around, but it's really kind of odd when it's a symptom that was one of your first and it comes back when you're this far in your disease has anybody had the same thing where you had it in the beginning, didn't have it, and it came back, but then it went away.
Speaker 2:That's what happened to you, corey. Right, it has gone away. And then, yeah, yeah, make sure. It's so perplexing, this disease, like, yeah, you know, come and go, and come and go, and you just don't know what's making it do it well we're.
Speaker 4:We were late because we were out self-diagnosing. I've had so much pain. The pain has been awful and I think it's been the Parkinson's, because just my hip joints and I mean it sounds like severe arthritis. It's in every joint, but then it's also in the muscles, so it's like walking in the morning is almost unbearable. It's like walking in the morning is almost unbearable. And so the palliative care doctor did one prescription and that didn't touch it and um, and she did another one and that was like so then she raised it in on that and that one works pretty well. So so I said to him when it went wrong, when I stopped because I was really into exercising and I have been for years. So when it went wrong I stopped exercising because it hurt just to walk. And are you all waving to me? Yeah, Okay.
Speaker 2:He had to jump off.
Speaker 4:Yeah, okay, I had. I thought maybe it's not. Maybe the sudden stopping and working out is what's wrong with me, is why my body's hurting so bad. So today we, um, before getting on here, we went over the mall and we just did one circle, but I did feel a little. My legs were a little weak and like they would have been if I had stopped exercising for a week. Um, I don't think it was that, because this pain has been a little more harsh. So I think it was just pain from Parkinson's or something. I don't think it was. I don't think jumping right back into a full exercise schedule would have helped at all. I don't know if I'm making any sense, but anyway, self-diagnosing.
Speaker 4:So, but I think we came up with an answer.
Speaker 3:Sometimes that's what you got to do.
Speaker 2:Yeah, it is like I said. It's so perplexing this disease, and you're just why what might work Now, sorry, you have a lot of the I'm sorry. Neuropathy pain, right? Yes, yeah, is that what you think?
Speaker 4:yours is like nerve kind of pain, tammy, or but then when it feels like it's in your bones, it's like I can feel my hip bones and I can when I walk, I feel like I can feel like you see the pictures of the skeletons and I feel like I can see that flat part and that curved part and how much each part of that hurts. So I mean, it's all in my head or it actually is, but neuropathy is definitely bad. But we're using the oils now and putting on my feet and that helps a lot. And I'm using the TENS unit more than I was. I got away from that and I should have still been using that. So that helps and I'm on Lyrica. I don't think there's anything else I can do for my neuropathy. I think I've gotten as far with that as possible, but it bothers me a lot, but it bothers me least not as much as hallucinations and shadow people and all of that stuff. So I don't know I was going somewhere with that, but I forget. Okay.
Speaker 2:All right, that's what. Like you, your pain goes deeper. It's not just neuropathy, right, right? Yeah, do you have similar experiences that Tammy's gone through, like that pain, the bone pain? Yeah, do you have similar experiences that?
Speaker 3:Tammy's gone through Like that pain, the bone pain.
Speaker 2:Yeah, yeah.
Speaker 3:That's what I.
Speaker 2:Now is that? Have you always had that type of pain, or is that now new, with what's going on with you now?
Speaker 3:You talking to Tammy? No, I'm talking to you. Oh no, I've always had it yeah, see, I haven't.
Speaker 4:I started out with. The first thing I was diagnosed with was a neuropathy and it was in my feet and my hands and it's just progressively gotten worse, but it's never been to where I felt it in the bones. It's like it's taking over my body and that's what's really kind of scary with it, and it's in my hands and going up my arms and I'm thinking, oh my gosh, pretty soon everything's going to hurt when I move it. But and then you don't know. You don't know if that's the way you're going to spend the next year, or I don't know. At least I found a pain medication that works. Um, when dr spock lets me have it, he'll. You know I have to have a certain amount of pain before he thinks I deserve one. He's just he doesn't want me to get addicted to it.
Speaker 2:I guess I'm not gonna even know. It's not really dr spock, is it no?
Speaker 4:anybody else like what, dr jehu?
Speaker 3:and that's one thing with me. They took me off, uh, uh, took me off morphine just the other day. Why? Why, trying to see if that's what's See? I overdosed again or whatever, and they don't know if it was the morphine that done it. But they said my body is not getting rid of the.
Speaker 2:What you take yeah.
Speaker 3:It's not getting rid of it. My body's not touching the M Metabolism.
Speaker 4:Metabolizing.
Speaker 3:Yeah, it's not metabolizing my meds. So they took me off the morphine, tried to see if maybe it's the morphine that was causing it or something else.
Speaker 2:So that's yeah, days ago, but so how? Couple like you didn't, intentionally, you didn't like you did last time you took med. It's just they're thinking because it's not your body's not metabolizing it, yeah, it.
Speaker 3:Which is what they thought last time too. The first time I blame that on me, yeah. The second time, and this time, no.
Speaker 2:So two days you've been off of it, how is your body feeling? Just copy.
Speaker 1:That same.
Speaker 4:Oh, did they lower it Becauseine's so so high? I wouldn't think you could just jump off no, I just jumped right off, wow oh you.
Speaker 2:your wife said this morning when I texted her that you, you are doing better than you were, yes, this weekend. So maybe, maybe it was the morphine that, yeah, how often do you take that a day? I've only taken morphine at night and then for breakthrough pain during the day. Okay, well, fingers crossed. That's what it was.
Speaker 3:Yeah.
Speaker 4:But again I have to tell you guys something. This is a little off character, but then I'll shut up and get off. I mean I'll mute myself. You know how. I have my jelly beans to keep me awake and it's like a joke between Jehu and Linda and some people. I was doing that seminar on LBD the other day that I had brought up Megan and I had posted something about it anyway, and webinar that's what it's called, and I'm thinking I hope these people can't see me. And Jay was looking at me. He said they can't see you, they can't see you, they can't see anybody.
Speaker 6:I said I hope so, and oh and, oh, my gosh, did I really hope so when I fell asleep and I had two jelly beans on my chest.
Speaker 2:They had fallen out of my mouth, my mouth. So the webinar didn't keep your attention, so I'm gonna have to sugar it up a little bit. But if anybody doesn't know, when she first told us about the jelly beans and then how she eats them, and then she was like, oh, I'm out of jelly beans. So I texted her husband I'm like, tell me the jelly beans, get her some more. So he came in the room with some more.
Speaker 4:That's why she's always falling asleep. I was, and it was just so embarrassing and then they started keeping me awake. But now, now they didn't and I hope. I hope those people couldn't see me, that nobody could see me.
Speaker 2:Yeah on webinars. They really can't see the people unless you know. Okay, they can't see yourself. Anyway, that's, that's funny, but it's not funny. But you have to laugh, like we said, you just gotta laugh, you know yeah you're going through that.
Speaker 4:I don't even know what woke me up, because I'm like I wake up with my mouth wide open and I look down and there's jelly beans did he take a picture of the wet jelly beans on your shirt?
Speaker 4:No, he wasn't upstairs. He didn't even know about it. Dang it. I've woken up with them in my hair before with you guys, but I'm hoping I'm past that. I don't know, I guess it depends on what I get for Easter, but the sugar switch was keeping me awake but it didn't work on this webinar. But hopefully, who knows?
Speaker 2:Yeah, who knows, we're going to stop here for this week. We hope you're enjoying hearing how a support meeting can bring a bunch of people from different parts of the country together to form this new Louis family.
Speaker 3:Okay, folks, you know 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 ask any questions you have and we will sure do our best to help and get the answers you want. And also, if you want, to any questions you have and we will sure do our best to help and get the answers you want. And also, if you want to be a supporter of the podcast, check out the links in the episode notes below for the two ways you can support this podcast. And remember, linda and I do not use any of your support funds for ourselves. It all goes towards the podcast expenses and also we are continuing to work on the advocacy part of our mission. So thanks to those who are already our supporters and thanks to any of you listening, should you decide to become a supporter.
Speaker 2:And remember that we post the links to the podcasts in both the Lewy Body Roller Coaster podcast Facebook page and our journey with Lewy Body page. And if you're interested in helping as an advocate or can lend lead sorry, lead a support group for those caring for a parent please email us at lewybodyrollercoaster at gmailcom. The more people we reach out to, the more people we can help. And just remember we are doing this podcast for all of us and we appreciate that you tune in each week.
Speaker 3:Yes, susan, susan, we want to. We want to thank you for coming back and joining us this week also. So thanks for joining us, folks.
Speaker 2:Until next week.
Speaker 3:This is Linda and Curry signing off.