Lewy Body Roller Coaster
Lewy Body Roller Coaster
Zoom Support Meetings: Part 1
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
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Thank you, you, you, you, you, thank you. This week and the next two weeks we are going to share with you a support meeting that we recorded. The group allowed us to record the meeting to share with you all so you can hear those in the meeting share openly about their symptoms and ways they cope with the ups and downs of this disease. But you will also hear lots of laughter and support and you can feel hopefully you'll be able to feel, through their words by hearing them, the love there is from the people in this group for one another, from the people in this group for one another. You will find you have. You will if you decide to join. You will find you have a new family with the group of people in these meetings. We hope, after listening to this three-part series, you will feel more comfortable to try and join in one of the meetings we hold each week. And remember you can join and just listen if needed at first, if that helps. So this week Kari shares with us how he is feeling on his downward part of the roller coaster while others jump in and share their symptoms as well. We talk about rock-steady boxing and sundowning.
Speaker 4:I recorded this using my laptop mic, so please bear with the sound, any echoing in some places. A quick thanks to all those who allowed us to record the meeting and shared Curry, ray, dory and Tom, effie and Dan. Sharon and Liz. So let's get this meeting started. Sharon and Liz, so let's get this meeting started. All right, I know you're struggling right now.
Speaker 5:What is going on? Oh Louie sucks. Right now it's mega. I've been down several weeks now. It seems like I just can't get back up. I've got tremor in both hands now and that really pisses me off. But, like I said, I got a tremor in both hands. I stay, my head stays foggy all the time and I just I was going to tell you that I don't think I can do zoom by myself anymore, just can't do it but, it's just been real bad for me.
Speaker 5:I can't I start losing track of words again, all kinds of stuff like that. It's just not been a good few weeks.
Speaker 4:Yeah, and you've been through this before. Yeah, it's kind of down with Louie.
Speaker 5:Yeah, this summer. I don't think I'm coming back up like I was.
Speaker 4:You know that we always read and hear that you go down and you come back. You just don't come back where you were, you just come back below where you were. Yeah.
Speaker 5:But your hallucinations.
Speaker 4:I still have hallucinations and confusion.
Speaker 5:Oh, yeah, yeah, like. And uh, linda, uh, we can be doing something and I just lose, lose, we're doing. You know, right in the middle of it, and I can see sometimes it upsets her that I do that. She's been good at it.
Speaker 4:You know she's not upset with you when you do that Right. She's upset with the disease.
Speaker 5:Yeah.
Speaker 4:When it's happening, it may feel like she's upset with you, but you know she's not oh, yeah, yeah, yeah, she's been.
Speaker 5:Like I said, my head stays foggy just about all the time now well, you are stuffy right now.
Speaker 4:Yeah, I mean, I can hear it and you know I text your wife, right?
Speaker 5:Oh yeah.
Speaker 4:To ask how you're doing oh okay. She said that you're fighting a cough too.
Speaker 5:Yeah, oh yeah, I got a bad cough.
Speaker 4:Yeah, how long have you had that A couple?
Speaker 5:weeks. Yeah. How long have you had that? A couple weeks yeah.
Speaker 4:What does hospice say about it?
Speaker 5:I don't think I mentioned it to her. Of course you didn't.
Speaker 4:That's what you do. Well, I'm going to text your wife and ask her to just tell them everything, even if you don't want her to, because there may be something they can do to help you.
Speaker 5:I don't know if I knew much for this cough. I don't know.
Speaker 4:To me you sound like you have your head and chest congested.
Speaker 5:I am yeah. And I don't know if I had to put my oxygen on for about three hours yesterday, and it's another thing. I've been losing my breath real good, real quick, I mean.
Speaker 4:It's been a minute before. You've had to use that before, right.
Speaker 5:Yeah, I use it every night. I put it on at night just to have it there with me, but I always take it off during the day. But like yesterday, I had to. She had dragged the machine over and, uh, I used it for about three hours yesterday, three, maybe four hours yesterday now, how long have you been using the oxygen at night?
Speaker 4:since you had hospice or before that?
Speaker 5:Since they brought it to me okay yeah, I remember them bringing you.
Speaker 4:You remember what went on that last week of Jim's life, where they brought me a truckload of stuff that I didn't even know what it was for and apparently it was part of an oxygen thing. They just didn't bring the rest of it.
Speaker 5:Yeah.
Speaker 4:But does it help you though.
Speaker 5:I can't tell if it does. Yesterday it helped me. Yesterday it helped me when I lost my breath for so long.
Speaker 4:Now, did you lose it after trying to walk somewhere? Yeah, how far did you walk?
Speaker 5:A couple of steps. I can lose it just in a couple of steps. Bad.
Speaker 4:Is it worse than like when you were still driving and that was happening?
Speaker 5:Is it worse than that?
Speaker 4:Yeah, remember you were walking around the truck. You couldn't walk around your truck, it's yeah it's probably worse than that.
Speaker 5:Yeah, remember you were walking around the truck. You couldn't walk around your truck. Yeah, it's probably worse than that.
Speaker 4:And did you tell hospice that today?
Speaker 5:Yeah.
Speaker 4:You know what I'd be doing right now if I was sitting next to you.
Speaker 5:Right Slapping me.
Speaker 4:Smacking you upside your head. There's nothing they can do for it well, they need to know that you know to record it. And have you taken like decongestion medicine, like oh?
Speaker 5:yeah, I mean I'm cough syrup for. Yeah, but it's, you got that cough syrup and it breaks it up yeah, like it starts.
Speaker 4:I think it starts with an amucinex or something I use uh, uh, robitussin.
Speaker 4:Yeah, you should try. Just lost to name it. But what did I just say, mucinex? Because that really will break up. Your Don't write it down. I'm sending your wife a message as we speak. So I'm just going to say we're in the middle of a Zoom meeting and I asked everybody on Zoom if it's okay if I record it on our Zoom today, because Carrie's been struggling. So I'm going to let everybody else share about what you're going through, carrie, and if they have any advice for you. Besides, let yourself rest. You know that's the hardest thing with you, I think, is you don't want to give your body.
Speaker 5:I haven't been trying to do it all. Yeah, I know we can't, they know I can't do it and I know I can't do it.
Speaker 4:I think this all started when you were trying to fix the washing machine and, yeah, all that. Maybe you overdid it mentally and physically.
Speaker 5:Yeah.
Speaker 4:So this is your body saying all right, buddy, it's time to take a rest.
Speaker 5:Yeah.
Speaker 4:You know, you do look better now than you did before.
Speaker 5:Do I look what?
Speaker 4:You do look a little better than you did last week, but I can hear that you're stuffed up.
Speaker 5:Yeah well, they got the washing machine and dryer fixed, Got them hooked up. They got two leaks in the serial line. They got to come back and fix. Everything is just about done.
Speaker 4:Well, that's good. Your electric blow will go down now because you're in a good condition.
Speaker 5:Yeah.
Speaker 4:It's coming in. So, hey, if there's coming in, we're recording today. It's because we're going to use it as one of the podcasts, because I kind of had Curry just tell us how he's been doing and struggling with his hallucinations. Still, how about delusions?
Speaker 5:Yeah, no, basically hallucinations and losing my breath are the two bad things right now.
Speaker 4:And what are you hallucinating?
Speaker 5:It's not stupid stuff. I wake up and I'll be talking to, like this morning, and I was talking to Doug. Well, doug, I haven't seen Doug since high school, but I remember I was dreaming about him and then all of a sudden I woke up and hollered hey, doug, come here. And Linda said she always said honey, you're not, that's not happening, stuff like that.
Speaker 4:Well, they're not scary, so that's good.
Speaker 5:Yeah.
Speaker 4:Right, I mean because before you would see.
Speaker 5:Oh yeah, I used to have some real spooky words.
Speaker 4:Yeah, yeah, so that's a positive to your hallucinations. Yeah, so. Has anybody else have dealt with that? I'm just going to be a teacher now and if you want to share, raise your hand and I will unmute you and stop playing your video games. I can tell who's playing. That's usually um right, how, how about you? Right? Have you had dealt with anything like curry's talking about?
Speaker 1:uh, no, I have not. Fortunately I'm. I don't have hallucinations. I have other problems, but elusive. You know, my problem usually is being up four or five times a night due to incontinence, as well as cramps from uh the disease. So so I I get my sleep one hour at a time.
Speaker 4:I remember Jim jumping out of bed because of his leg cramps and now, looking back, like I literally have a video of him, he would go and put alcohol on his legs and now I realize it was because he felt like he had creepy crullies in his legs and he was trying to kill it with alcohol.
Speaker 5:That's what we're saying real quick. It's going on. My incontinence had pretty much stopped there for a couple weeks and I thought, oh good, cool, you know that's going to stay away now. Well, no, it come back.
Speaker 3:And it was like, you know, that was a joyous thing. And then afterwards there was like a little, you know, in the room they had refreshments and things like that. I'm still watching the baby and talking. And then there was a meeting after church, meeting after the. After that that took an hour. And then there was another meeting that was going to be with the attorney general of rhode island, that that people were encouraged to attend and I went home and I just like collapsed and I mean I slept like just I just slept like death. I mean I was just like totally out of it. You know, it's like when the same thing and the same thing, it's like all. It's like all that was all that was wonderful but it's great.
Speaker 3:And then when I go to Rocksteady Boxing, sometimes when I, when I go, I go wild with you know, get on that heavy bag and I start, you know, beating, beating the heck out of it, and I get to the point where it's like I'm taking out all my frustration. You know it's it's a the name, you know, the name of the bag is louis. Beat it up, yeah, uh, you know. And and then I do the you know, and I do another bag this other bag and I do the speed bag and I I go, I'll go three straight minutes punching a speed bag and then on to the next station and I come out of there exhausted.
Speaker 3:And sometimes, if they control the program I don't want to make this long-winded, but when they control the program and they make it more varied and they and they incorporate a lot more stretching and a lot more mental challenges and it and it's and it's uh and it's like a um. You know, it's like a smorgasbord of things that they have you do a little bit of yoga, a little bit of tai chi, a lot, lot of stretching maybe not so much physical boxing and things. And challenge me on walking. My biggest problem is walking a straight line and they do things to help me with that. And if it's a more comprehensive approach to what's wrong with people, I don't have the same type of reaction afterwards. So it's, it's like. It seems like everything is such a you know, a fine line balance. You know, we went out the other, we went out and with a couple the other day and I was a raging uh. Whatever you call it begins with a and ends with e, you know, yeah we got.
Speaker 6:It really wasn't he thought he was thinking that way.
Speaker 3:It wasn't so much expressing it well, the way as aware as he was but I wasn't aware of it and it's just that you know it's like those things are and and then you know, sometimes I get, if I get overdone, I get the shadow people you know. And I thought, get, if I get overdone, I get the shadow people you know. And I thought I was done with those shadow people. I thought I was done with the shadow animals and the hallucinations and stuff like that. But those can come back.
Speaker 4:Yeah, now when you're doing a rock steady boxing, is it not them leading it? Because I can imagine if I was doing it and they just let me rip on one of those bags, I would keep punching it until my arms I couldn't lift my arms anymore, which is in my head Right, even when I walk, which I'm like I used to walk a 10 K five days a week and I'm like I'm out here for the first time while I'm out here, I'm going to do three and then I pay for it. So is that kind of the same thing with?
Speaker 3:the rocksteadyboxing. Yeah, they control it, but uh, you know, I mean people just take a break, they don't, they don't go at it for three full minutes like I do, like a maniac, you know, yeah.
Speaker 4:Yeah, but that's the fine line you're talking about Like with you, dan. Maybe is there a point when you exercise that you know I probably should stop, but I'm going to keep going, and then that makes you overstimulated.
Speaker 6:Well, it's interesting that I, back in, like January and February, I did some walks for the first time since last summer and I was appalled by how much I had lost in that time and how overall weaker and dysfunctional my body had become.
Speaker 6:So I got the message and the couple of people who do walking with me you know fairly often, Fairly often they really got on me and said you know, you've got to set very low targets for your, you know, for your walking, and so that was improving bit frustrated because I was going from, just by way of example, maybe 30 seconds around an outdoor to push myself more and more and the next thing I knew I was lying at home on the couch feeling like I didn't know when I would be able to walk again.
Speaker 6:And it's only come back very slowly. And so that's similar to what other people are saying small group of people who once every week or two get together for a Zoom of that night's Celtics game, and it's something we really enjoy because invariably it ends up not only being about my symptoms but also just great conversations about what's going on in the world. And we did that last night. So that was last night and by the time we got you know, back to our starting point. Um, and the celtics game was about to end, I I felt like I couldn't go another inch yeah, I think we talked about this.
Speaker 2:We happened to have an appointment with Dan's neurologist, dr Goodheart, like a week and a half ago, and we were talking about this challenge of how do you figure out when you should stop.
Speaker 2:And maybe, like you, tom Dan wants to push through it, and any other time in his life with exercise he would push through it like no pain, no gain, right kind of thing. Um, and the thing that I think became apparent with the last week and a half is that, unfortunately, it's not like your body's going to say okay, that's it, you reach the limit, stop. You sometimes overdo it, unfortunately, and then you have to pay, and so it is really frustrating because, like, you're wanting to push as much as possible so as to get the benefit of that, but then if you push too much, then you're on the couch the next day and in two days and then, but there's like nothing that exactly tells you, like there's no clear answer necessarily but for me, one of the results of it is that I get much more anxiety and I'm asking myself when will I feel better or when will I feel at least improved, if you accept that I may never feel better.
Speaker 6:So it becomes a psychological challenge as well as a medical or physical challenge.
Speaker 2:Yeah, and we were a little bit. You know Dan was mentioning they're trying to get back both between the weather and then the medication change in February, just like there was a whole all the exercise ground to a halt, like stop. So that in March we're trying to help him gradually get back to that. And the first time he went for a walk it was literally for six minutes and that was it short, short of breath, couldn't do more than that. And then it went up to 20 minutes and then 27 minutes and once even 32 minutes. But then last week one day he did 25 minutes and then he was like on the couch flat out for two days. So it's frustrating because, like you know, our minds want to be like OK, now he did six, now he did 25. Now he did 27. We can keep going, but it's not necessarily the case. So that's the part. I don't know if other people have any advice about that.
Speaker 4:Go ahead, Tom.
Speaker 3:Well, I don't know about you, dan, but that sounds like a great thing to get together for something like that, you know, for the Celtics or whatever, whatever team you like, it could be anybody. But that type of thing, it's social and it's like there's a you know automatically. There's a sense of camaraderie, a sense of belonging. It gives you all these wonderful feelings and it's like I've learned that, like I can't think of the word Stimulation. Any sort of stimulation Doesn't matter if it's good or bad.
Speaker 3:You know, if I go to the, I need to prepare for things. I need to. If I'm going out to play cards on a night, I need to make sure that I don't do a lot of other things. I need to make sure I get a't do a lot of other things. I need to make sure I get a lot of rest that day and overload myself, because if I do, I'm going to sundown. Now you have to take into account sundowning is really going to play a role in that, and I don't know if you sundown or sundown and just don't realize. It know, just like a, just like a toddler, my personality and everything starts to deteriorate and then I'll become like a toddler and I'll be. You know, tantrum me a little bit. That's called out of make. I'll coin my own phrase.
Speaker 4:But do you know you're? Do you feel that you're becoming a?
Speaker 3:No, unfortunately, what's what's happened for me lately is that I it's like I don't know if it's a hallucination I've had these inner things going on, but it's like I've been telling Dory, finally confided in her. It's like I said, you know, I don't think I's like. I said, you know, I don't think I have Lewy body anymore, you know, with all the overwhelming evidence to the contrary. You know, and it's like that's what we're dealing with, dan, we're dealing with a mind that doesn't have a good executive function and isn't able to set limits.
Speaker 3:People ask, ask well, don't you know you're going too far and it's like I haven't gone far enough on that heavy bag. You know if that would be my answer, you know, because I don't have that. You know it's time to stop. They have to come over and they'll stop me because I'm going, I'm going at that thing and, uh, and, and, and, uh, uh, it's, it's hard to do that.
Speaker 3:It's like I need to.
Speaker 3:You know, in some ways I'm like a child.
Speaker 3:I need to be, I need to be, uh, taught, you know, you know what this is too much and I need to be able to listen to my, to my wonderful wife here, when she says you know, maybe maybe you shouldn't be doing that, maybe you need to be able to listen to my wonderful wife here when she says you know, maybe you shouldn't be doing that, maybe you need to rest, or remind me we're going to be going out and you need to stop and rest.
Speaker 3:And because all of the things that will aggravate so many things, you know, aggravate things and you know, a little Parkinsonism comes on a little bit, I get a little tremor in the right hand and I get disoriented and I don't know what's going on and I ask her the same question numerous times and annoy her and seriously, that has a snowball effect too, because if I'm doing that now, I'm creating tension with her and I'm creating tension, that's. You know you can cut with a knife sometimes, because you can only be asked the same question so many times before you get frustrated. I'm doing that to people and it's not intentional, it's just the way it is.
Speaker 4:And, yeah, I, I need to, I need to rest more, I need to my limits you know my limits like right now I need, I need to shut up I just I think that's the hardest thing is you, you, you, like jeffy was just saying, you don't realize where your limit is and you keep going and you're going to push yourself because that's what we have done with ourselves all the time and you just don't know it. 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. You, you, you, you.