Lewy Body Roller Coaster
Lewy Body Roller Coaster
Navigating Sleep Disturbances in Lewy Body Dementia: Practical Tips and Community Support
This week, Curry and I share about REM Sleep Disorder and the importance of having your loved on video tape your sleep patterns.
This episode also digs into the frustrating journey of finding effective sleep aids, featuring personal experiences with melatonin, Seroquel, Clonazepam, and CPAP machines. We discuss the challenges of distinguishing between dream states and reality, and the impact of sleep disturbances on daily life and relationships. Caregivers will find invaluable tips on tracking symptoms with checklists and journals, and the importance of providing clear evidence to doctors through videotaping behaviors. Lastly, we underscore the power of community, especially through Zoom support groups, as a vital resource for shared experiences and mutual understanding in coping with Lewy Body Dementia.
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welcome back podcast family yes, welcome back all of y'all as always, we want to thank all of our supporters who have been so patient with us, as we do our best to get an episode off each week, but sometimes Louie and I get in the way and Linda forgetting to push certain buttons and thinking I lost it when I didn't lose it. But it is what it is. We're doing our best.
Speaker 2:Yes, and we always say that if it wasn't for all of you, we may have stopped after the first few episodes because, be quite honest, the two of us knew nothing about doing a podcast and, in all fairness, we still don't, but we have helpers. It is a lot of planning but worth all of it if someone can learn from what we share or feel like and they learn that they're not alone on this journey. But wanted to send a shout out to andrew zapula this week for all he does editing the podcast for us each week. But before we start, I want to give a shout out to some of our supporters. This week we've got Rosh Crossan, fred Pounds, lana Badcock, pia Bedard, michelle Austin and Lisa Severs.
Speaker 1:A good list. Now, before Curry gets into what we're doing, just a quick reminder we're recording this May of 2024, and we're posting on the Facebook pages about the Louie, buddies and Caregivers Meetup in Caney, kansas, september 14, 2024. And we really appreciate there are some people I think some of the people you just read off who might not be able to make the trip that are donating money towards helping us.
Speaker 2:Yes, I think that's very cool.
Speaker 1:Yeah, yeah, because it's only $10 registration, which isn't going to cover meals someone's full meal. So we really appreciate, yeah, that's something special that people are doing Like, hey, we can't come, but here you go.
Speaker 1:Exactly, yeah, that's something special that people are doing like, hey, we can't come, but here you go, you know exactly, you maybe help somebody else, you know, help us to take care of what's needed to pull the event off and maybe helping a couple people who can't afford the ten dollars. We can help them that way too. So thank you yeah you're on the bottom of the page. Okay, y'all, it's just me and podcast linda today. Did I miss you, miss it?
Speaker 2:okay, y'all, it's just me and podcast linda today doing one of our fireside chats if we could listen.
Speaker 1:I just want to say, before we start, I asked you a question twice in today's zoom and you I thought you were frozen. I was frozen and everybody else was laughing at himself. So I'm like, why is he not responding? And I'm like somebody else asked the question that I just asked, so megan did. And then you responded. That's why tom was like oh no, we have to tell linda what he said, because I don't know responded. That's why Tom was like, oh no, we have to tell Linda what he said, because I don't know whether you froze up. But I was like all right, somebody else asked because I've already asked twice and he's ignoring me.
Speaker 2:I didn't hear you.
Speaker 1:I know that's what that was all about. But then you answered Megan, and I'm like, yeah, anyway, today we wanted to share information on a question someone recently posts and, before we start recording, kari was chiming in on it, not even knowing what the topic was going to be. So it kind of all worked out. But I first want to say it's amazing how much, when someone posts a question, how people just jump on and share their experiences and their advice. It's pretty amazing to see, especially when somebody new comes on and asks a question. So thanks everyone for helping each other on the Facebook pages. We're all in this together, so it's nice to see that. So here's nice to see that.
Speaker 1:So here's what someone posted Said that she's waking up and still feeling like she's in a dream. He or she I'm not sure if it's a male or female which led to this question that was posted. Doctors at the last visit said I do not violently act out my dreams, so there is zero chance I have lily body to mention. Well, everybody, just let that sink in for a minute. It's you just, it's not funny, but you just have to be like um it's amazing that some of them are like that yeah.
Speaker 1:So here's what the person explained what their sleep is like. I never feel like I have slept when I wake up. I never feel rested when I open my eyes and they have been asleep for six hours, but I feel like I just closed them.
Speaker 1:You've you've shared that many times that happens to you and it takes me hours to fall asleep. I will lay there and it feels like my body is paralyzed, but my brain has this intense paranoid stream of it I get sometimes she could hear she gets scared to fall asleep and you've mentioned that too before. Um, I can't move, but I can't stop the train of thought not like racing thoughts and anxieties, it's just steady one train of thought, um, and that he or she has horrible nightmares when they sleep. They could be intense and have had like ptsd nightmares for many years, but but the last few years they have been different. It takes me hours to feel like I'm out of a dream, so I don't act out my dreams, but I have sleep disturbances and do others have sleep like mine? And how do you explain it to your doctor? Right now, they're writing off my sleep as depression and anxiety, but it doesn't feel like that. You see why I pulled this question.
Speaker 2:I do, I do.
Speaker 1:It's just, and it was just ironic, you started talking about the same topic before we even started.
Speaker 2:Yeah. And she goes on to say my boyfriend says it's like sleeping next to someone who's shivering all night I vibrate, and he can feel it. Plus, he says most nights I'm tense when I'm asleep. I'm still trying to decipher that one, though.
Speaker 1:And then someone and this is where people started sharing their ideas and experiences and thoughts Someone said that at least your boyfriend is an actual witness to what you are doing during your sleep and that doctors need to listen and accept and not dismiss what you're describing. And that's where I recommend having your loved one videotape you even during your sleeping. That's going to be your best ammunition.
Speaker 2:And someone replied you need to find another doctor who actually knows something about LBD.
Speaker 1:Some of the stuff you've heard us talk about before. But I just thought the responses people were giving this person were very powerful. I'm like, okay, we've got to bring this up again and hopefully there are doctors listening and just that whole. Because let me see what that last comment was they didn't violently act out the dream, so there's zero chance of everybody.
Speaker 2:What right that's you know that's on the original list of symptoms and you know they need to get away from that, they need to get off that yeah, oh is on the original list of violently acting out yeah oh, I didn't realize that, because Because it's not true, not everybody violently acts them out.
Speaker 1:I don't know. So that doctor is referring to a specific type of REM behavior disorder which is common in Louis. However, this is what someone responded. However, there are many different types of REM disorder andie can cause any of them. There is no different from the docs who insist something has the wrong type of tremor. I've experienced internal resting, postural spastic and intention tremors at different times since diagnosis. So which ones are wrong?
Speaker 2:Yeah, that was a good point, that one now that you don't have. I think someone had told us they didn't have lbd because they didn't have a sitting chamber right right and now she says I'm going to see if I can schedule with the louis center in columbus. I can't see myself going back to work in a few months.
Speaker 1:I'm not okay and it's not just fine like he says yeah yeah, um, and a theme throughout this is, you know, we were never in our minds would cross the thought would cross that you need to not not be mean and say fire your doctor, but go to a different doctor. Like get second opinions, cause there's we're so used to. Just okay. The doctor said that's what it is, that's what it is. But with this disease, don't be afraid to to say I'm going to go get a second opinion, don't even tell the doctor, just so I, they're just um. So I think it was powerful for her.
Speaker 1:All these reasons, him or her I can't remember whether it's male, female, opposed to this um, to hear everybody's feedback. So someone had said I've only been diagnosed with louis for a year and a half, but if there's one thing I've learned, it is that louis is sneaky disease that manifests itself in many different ways. Everyone is different. It just depends on where in the brain the lily decides to attack. And another person said I like the reference in the Robin Williams movie. It picks off neighborhoods in the brains and no two people get the same pattern. I don't remember that, but yeah.
Speaker 2:I don't either, but it's been such a long time since I watched it.
Speaker 1:Yeah, it's been such a long time since I watched it. Yeah, yeah, it's free on YouTube now.
Speaker 2:Yeah.
Speaker 1:It's Sparks, right Sparks.
Speaker 2:Robin's Wish? Sparks isn't yet. Yeah, sparks are mainly using it in colleges and medical schools.
Speaker 1:Yeah, so if you haven't watched Robin's Wish, it's about Robin Williams' story, but it's hearing about him after he passed away.
Speaker 2:Right, right, and then another person said incorrect on the doctor's part. My husband wakes up and is still in his dream state. It takes a while for him to distinguish between the two worlds and so on, with a bunch of emoji emojis.
Speaker 1:You can imagine her saying him or her saying what is wrong with these doctors? It's just we need to help educate them. That's you know and that's you know. Sadly, we. We need well, we just need to educate. Um, someone had mentioned I don't act out my dreams, but I do have dreams. I don't know dreams, everything that are called dream hallucinations. They're always weird and sometimes I remember them and other times I don't. Before she took two medicines and remember. We're not giving medical advice or suggestion suggesting we take any specific medicines. We're just sharing what other people and we go through. But this person said before Seroquel and Clonazepam I couldn't get to sleep. I wake up and hear music I heard from the previous day and I think about the person I dreamed about. My husband says it's anxiety as well. I would try to get a doctor to try you on some sleep meds Now I know a lot of people take take um, trazodone, sir.
Speaker 1:Well, yeah, over to the counter now. No, no, melatonin, melatonin, yeah, yeah, that's what jim took. Um, my husband took melatonin and then towards the end that was trazodone. Um, so there the thing with louis is no's no cure, but there are medications to help with the symptoms. And then the flip coin of that is that some medications will help you and might not help others. So it's kind of this trial and error until you find out what's going to work best for you.
Speaker 2:And it's like Linda tried. I tried melatonin about four years ago and it didn't phase me, didn't do a thing for me, and so I just didn't do it anymore. And then here recently uh, within the last six months, I ordered some melatonin in from my pharmacy and, man, they knocked me out. Now I can take one and that's the last thing I remember when I wake up is that I took it. I don't remember anything after that wasn't that crazy yeah yeah, I don't know this.
Speaker 1:Yeah, this disease, for sure, is um yeah.
Speaker 2:One person said they talk like people with paper heads. I don't think they know jack about it.
Speaker 1:Did you write that?
Speaker 2:No.
Speaker 1:It sounded like something you would say it does sound like me, doesn't it?
Speaker 1:I know. Anyway, always wanting sleep studies, this person said heck, no, I have plenty of videos. Good for you for having so many videos. Someone said it Louie is a sneaky disease. Someone said it took them 20 years to get diagnosed and that this person had told the doctors what my husband had. I can't imagine 20 years, but I was the same. I told Jim's doctors, I told him Louie body, and they're like no, it's Alzheimer's. And then it got changed to Louie body. I had a home sleep study done, which most people that's one of the main things they send you. Did you have a sleep study?
Speaker 2:No, ma'am.
Speaker 1:No, not even at home.
Speaker 2:Nope.
Speaker 1:Yeah, and you don't have a CPAP machine.
Speaker 2:No, I don't have a sleep apnea.
Speaker 1:Yeah, well, they had Jim do a sleep study and something at home too, and they wound up giving them the CPAP because they said he's on borderline to have an apnea. So here we're going to put you on this machine. I didn't think he needed it but he used it. So someone said I had a home sleep study done. I had close to 20 events per hour. I'm on a CPAP now. That's what we're talking about. Sleep doctor said to make sure to tell my neuro it was central sleep apnea and not obstructive. There is some obstructive but mostly central sleep apnea going on. I have it during the day. Now I just stopped breathing. We keep telling him it's not anxiety and that this person's hoarding um, I think it's a female her breath, uh, and again her loved one videotaped it. That pause for like 10, a second, 10 to 20 seconds, several times. I'm gonna stop breathing. That sounds like apnea to me.
Speaker 1:It's like the whole body goes on pause um, nor says. It sounds more like incurable fnd. I don't know. I don't know, I I'm.
Speaker 2:I'm real lucky that I do not have sleep apnea. Uh, and why I don't, I don't know, but I'm sure glad that I don't.
Speaker 1:Did they ever suggest you getting a test? No no, no.
Speaker 2:He asked me if I had sleep apnea and I said no, and the only kind of thing I had, like that was I do a sleep-deprived EEG, you know, and I just had to stay up all night. She had them wires hooked up to me. But yeah, this other person says yes, I've had everything you're saying. I've had the neuropsychologist dismiss what I told him about waking up, talking all the time, and I can't wake up from my dream for hours and I'm in a stuporous state. The doctor asked my daughter if she had seen me flailing around. She said no, but she did not ever see me sleeping. When my husband was alive, he witnessed me waking up and talking and I also was kicking in the night. I was having a dream. I was trying to kick the devil off of a cloud I was on. This doctor did not accept what I said because it did not match exactly what he said. Flailing, I feel men thrash and flail, but I not it's.
Speaker 1:I just don't understand why people aren't believed. It's just I don't know. I guess they just who wants to make something up about, about disease yeah, and I just want to know like how, if you have sleep apnea, do you know you have sleep apnea, like the doctor asking you? Yeah, I guess he was relying on Linda to weigh in.
Speaker 2:Well, he also asked me if I snored. I said no.
Speaker 1:No.
Speaker 2:Which now I do snore sometimes, but not much.
Speaker 1:Yeah, I was just curious about that. So someone else shared that you can't diagnose or undiagnose Lewy body on one data point. That's ridiculous. Not everyone acts out violently or if they do, it may be infrequently. In my opinion, you need to see another doctor. You can find a checklist online for Lewy body symptoms. It might be worth printing that out and checking off their symptoms.
Speaker 2:I'm doing that before my next doctor's appointment, just in case the bottom line and we do post that checkoff list in the groups every now and then so it'd be easy to find yeah, and it's just keeping a journal and writing everything down, like having that, having more than one data points to show people and the videotaping is.
Speaker 1:I think that's that's more powerful than you writing writing them down but just go with all this ammunition to try to help the doctors, help you.
Speaker 1:And the bottom line please don't, please don't be afraid to switch doctors. I know we aren't used to having to do this, but with this disease you really need to find someone who really knows it. You know, my pet peeve is if you go to find a doctor and they have 13, they're specialized in like 13 things. In my mind, just from our experience, chances are they're not. Yeah, they're not specializing.
Speaker 1:I agree, but I do have faith that things are getting better from where we started three years ago when we started doing this podcast and doing the now five support groups a week, because the more we keep sharing and telling our stories, the more others will really learn from us and understand better what the WeBody is. So please keep up the questions and responses in the Facebook groups, because we are in this together. And someone we just left the Zoom a couple an hour or so ago and someone on there had said um, I think correct me if I'm wrong my friend tony had said I think she told her doctor about she attends three support groups in a week and that he was amazed that she has so much support.
Speaker 2:Yeah.
Speaker 1:Yeah, yeah, I mean that's if you haven't joined in one of the Zooms, because we just had somebody new join from Dublin, dublin.
Speaker 2:Dublin Ireland yes.
Speaker 1:Dublin, ireland, today. Yeah, yeah, you can't talking to someone else. Going into the Zoom group, where you all speak the same language, is very powerful, like everyone in that group is going to understand, whether you're the person with a lewy body person looking for a diagnosis or a caregiver. So what will you share with me about your sleep?
Speaker 2:Oh well, there have been been times, and it's been more here lately. I'm gonna say, maybe the last couple months, maybe, uh, maybe a little bit longer, maybe not that long, but uh, I'll wake up and, like one morning, I woke up and asked Linda, why is Goose doing that? Or tell Goose to do it this way, or something like that. And you know, goose is back in Texas and so, like she said, she said, curry, you know you're just dreaming, but I've had several cases like that where she tells me hey, you're just dreaming, it didn't happen, it was just a dream, you know, and used to. I didn't, didn't, didn't have that, but it just recently started though now it is, it's it's.
Speaker 2:It's when you wake up. You're wide awake, but you're still talking about the dream you had, because, I mean, you're still in it. You're still in it.
Speaker 1:I don't know how else I'll explain it yeah, and does it take you a while to come out of it?
Speaker 2:yeah, it does do you?
Speaker 1:do you realize that you're coming out of a dream like, at what point do you realize?
Speaker 2:once linda tells me it's just a dream, I do, yeah, yeah.
Speaker 1:Yeah, yeah, so that's new for you.
Speaker 2:Yeah, it is Actually. That's just been going on maybe two months at the most.
Speaker 1:Now, how about with the? I heard your phone. I'm just telling you, yeah, you were like sorry, you guys probably didn't hear, but you're like teacher, caught me Right? There's a look on your face um, oh, and now I thought forgot what I was gonna say. Yeah, oh, lord, um, it's been one of those, been one of those days for me.
Speaker 2:Yeah but I know exactly what these people are talking about when they say staying in the dreams. I didn't, you know, I didn't understand what they were talking about. I'd heard several of them talk about it over the last year or two and I just couldn't figure out what they were talking about. Staying in your dream, but now I know exactly what they're talking about. It's really a weird feeling.
Speaker 1:Yeah, yeah, because someone in Zoom talked about that today too.
Speaker 2:Yeah.
Speaker 1:That you're just stuck in that dream. So what advice, being as you've experienced this, what advice would you give other caregivers to help the person with Louie who still thinks they're in the dream?
Speaker 2:Oh, tell them, it was just a dream. Tell them that whatever they're doing isn't really happening. It was just a dream you were in. That's all I know to do.
Speaker 1:And with Jim. I don't think he ever really woke up, still thinking he was in a dream, but I know I've shared many times that I would kind of bop him with a pillow, just to wake him up out of the dream and then make sure that he's awake, out of the dream so he can go back to sleep.
Speaker 1:Yeah, yeah, I don't. I mean, like you said, you can't even understand or imagine what the people were talking about, with this experience that you're still in the dream Now when you come? I I'm just curious, the one about goose, when you? Came out of the dream. Did you still think you were in texas, you think?
Speaker 2:uh, you know, I I don't know, I really don't know where I thought, I don't know if I, once I was awake, I knew I was here, uh, but I would say I had to think I was still in Texas.
Speaker 1:Yeah, I think you were working with them now.
Speaker 2:Yeah.
Speaker 1:I think you shared when you first got there that was taking you a long time to realize you were in Caney and not yeah. And has that passed?
Speaker 2:Yeah, it's passed.
Speaker 1:Okay, yeah, it's probably just you. You know moving, yeah, everything that went along with the move.
Speaker 2:Yeah.
Speaker 2:So we just we used to I would wake up and I wouldn't realize, I couldn't tell if I was in our house there in Texas or our other house in Texas that we had and that we sold in 2006,. You know, uh and I've had that here a couple of times uh, where I wake up and can't realize, takes me a minute to realize which house I'm actually in. And you talk about a weird feeling. That really is because you, you sit there and you look at the closed doors and you don't know what's behind the closed doors, because you're still trying to figure out which house you're in. You know it's strange, it really is. It's a disease or something else.
Speaker 1:Yeah, Because you wake up and you see all the same furniture. Yeah, you just have to get your brain to catch up and you know focus on which house that you're in. Well, I'm glad that that has subsided. I'm glad that um and melatonin is starting starting to help you that's really strange how that melatonin just started working on me.
Speaker 2:You know, like I said, now once I take it, the next thing I know when I wake up is that last thing I remember was taking the melatonin. I don't remember staying awake anytime afterwards or anything.
Speaker 1:Wow, that's great. Yeah, now are you getting more sleep than like in consecutive hours.
Speaker 2:Well, yeah, I probably am. I still get up and down through the night, but probably not as bad, as I was there for a while.
Speaker 1:Yeah, that's good.
Speaker 2:And I would think I'm getting more sleep.
Speaker 1:Yeah, I mean, you came into Zoom today and even now you know, because I know you didn't go to bed until about 3 in the morning because you were waiting for your loved one to come home.
Speaker 2:Yeah.
Speaker 1:But yeah, I'm hoping that melatonin helps you, because not getting sleep, that… oh, that's terrible, terrible.
Speaker 2:That doesn't help. Yeah, it didn't help anything, no, it makes.
Speaker 1:That's what friday. I didn't sleep thursday night, I didn't sleep all night and then I went to pt friday morning and then I texted you and megan to start to group because I was so tired I I had to go to bed, yeah you know, because it just you know you got to get that sleep.
Speaker 1:But anyway we wanted to share with. I just thought those comments that people were posting on this question were very powerful, so we kind of wanted to share that with you this week yeah, and before I go to my next sentence here, I want to remind everyone about our Zoom groups.
Speaker 2:On Mondays and Fridays we meet at 1030 Central Time, 1130 Eastern Time, 930 Mountain Time and 830 California Time. So that's Mondays and Fridays at 1030 Central Time. And then on Thursdays we have a meeting with just people, and the Monday and Friday meetings are for anyone caregivers and people living with Louie we have a good mix of them there. And then on Thursday I meet at 330 Central Time and it's only for people seeking a diagnosis, or those who have been diagnosed, or those who have been diagnosed Every now and then we let caregivers in the first time or two to help their spouse get accustomed to it, you know.
Speaker 2:But then the caregivers normally don't come anymore, because it is just for people living with Louie or sticking to diagnosis. And on Saturday help me out here, what time is the Zoom for? 3 pm? 3 pm, pm eastern time, 2 pm central time, and it's for caregivers only yes, spouses spouses, I'm sorry, spouses, yeah, yeah, and then, and then you hold the widow widower group on Tuesdayuesday at noon.
Speaker 1:No, it's 4 pm and right now it's just for widows. We're we're working on getting a widowers group. Okay, it's, oh sorry, um four o'clock 4 pm, eastern okay yeah, folks we'd like y'all to join in with.
Speaker 2:In with us. You'll make a lot of new friends and you'll meet people who are going through what you're going through and may have gone through what you're going through, and maybe they can help you get through it.
Speaker 1:Yep.
Speaker 2:I always learn something from every Zoom. I always learn something from every single meeting. It doesn't matter.
Speaker 1:Yeah, today we just had a Zoom a couple hours ago. It's just beautiful to see how everyone feels comfortable enough to ask any question with what they're going on. And I always say we usually start off laughing and then people ask serious questions and, yeah, always leaving laughing. So it just really becomes like the widow group. Now, with the ladies that I've started that with, we don't even consider it a widow's group anymore. I mean, we still do talk about, you know, stuff that we had to go through that week, that we had to figure out on our own, but it's like a friendship we're going to have for the rest of our lives yeah um, I'll tell you I hope that your group does not grow any this year.
Speaker 2:I'm afraid it's. Last year we had a bad year yeah, we lost a lot of people last year and I really hope that this year we don't well, I mean we, we know it's, it's, you know it's a disease.
Speaker 1:But I really do and I won't continue to say that more that people are educated and the more the doctors are learning about it, more that people are going to be, their symptoms are going to be treated better. Yeah, I think so which is going to extend their lives, in my opinion?
Speaker 2:You know, I'm not a medical doctor, but yeah, you know they say the earlier you're diagnosed, the better journey you're going to have. I'm a true believer in that.
Speaker 1:Yep, yep, I agree.
Speaker 2:Okay, folks, we hope you learned from what was shared this week, as we hope to do this kind of sharing again in future episodes. And remember, we want all of you to be a part of our podcast series and share your thoughts on topics you want to hear about. We'd love to hear your feedback, send comments and suggestions to either our email, louisbodyrollercoaster at gmailcom, or on my Facebook page. Our Journey with Louie Body, dementia and folks. Another reminder we're not giving out any medical advice. We're just simply stating our experiences.
Speaker 1:And remember, we do this podcast for all of us and we really appreciate that you tune in each week.
Speaker 2:Thanks for joining us, folks.
Speaker 1:Until next week. This is Linda.
Speaker 2:And Curry signing off.