Lewy Body Roller Coaster
Lewy Body Roller Coaster
Zoom Meeting: Part 3
This week is part three 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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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. Without you all, we couldn't do this thing.
Speaker 2:Let's continue with the last part of this three-part recording, as Curry continues to share how Louie is wreaking havoc on him right now. How are you, joni and Gary? How are you guys doing?
Speaker 4:The only thing I had recently was the.
Speaker 2:I had a burning pain you mean on a what?
Speaker 1:It felt like burning painful. It felt so painful. It felt like you. Painful, so painful. It felt like doing an Amazon fire.
Speaker 2:Yeah, like the nerve pain, burning nerve pain.
Speaker 1:It hurt. Believe it or not, it was a crazy icy heart. I see her Went away. The next two days it up Less and less and less. Friday it was, uh, a little bit left over, just standing In the end by the elbow.
Speaker 4:You do one squat and it just turns so bad I just couldn't do it.
Speaker 2:Yeah, well it's good that you got it away with, just the icy hot. You didn't have to take medicine for it. I think most people take gabapentin for that right Curry, Is that what you're taking gabapentin for?
Speaker 3:Yeah, I used to take it. They took me off gabapentin Really.
Speaker 2:Because you were on morphine.
Speaker 3:Yeah.
Speaker 2:Okay, so it's only been two days. Do you feel the nerve pain coming back?
Speaker 3:Oh yeah, I mean, I still have the pain.
Speaker 2:Even on those other meds you still had the pain. You just maybe wasn't strong, yeah, but now that you've been off of them, yeah, see, I've been off gabapentin for probably four months. Hmm, I didn't realize that.
Speaker 3:Yeah.
Speaker 2:How long have you been on morphine? Four months.
Speaker 3:I've been on morphine since April. No.
Speaker 2:No.
Speaker 5:I haven't no.
Speaker 3:I've been on morphine? Probably no. I've been on morphine a long time About a year, probably no. I think I'm working a long time about a year is that how long you've had hospice already?
Speaker 2:yeah, in April it'll be a year crazy anybody else just like time is just. Yeah. I'm like what my alarm goes off at 11 15. I'm like it's Monday again. It was just Monday, yeah. Yeah, I'm like what my alarm goes off at 11.15. I'm like it's Monday again. It was just Monday, yeah. Huh. Well, I hope them taking you off all that, it's just taking it. And you were in the hospital for a bit and it took you a bit the last time that you accidentally self-medicated yourself too much. Yeah, took you a minute or two to get through. Like maybe almost a week right to recover from that.
Speaker 2:Yeah, it was yeah, so remember that. And when you're getting frustrated right now, that that's what it is. Your body just needs a long time to get it out of your system, you know yeah yeah, I try to remember all that stuff.
Speaker 3:It's just hard to hard to stay positive.
Speaker 2:Yeah, waiting for the it to pass yeah but remember that you've been through this many time oh yeah, it bought them and we're like oh, is he gonna come back? And here he's coming back up. But remember that you've been through this many times oh yeah, it bought him and we're like oh, is he going to come back? And here he's coming back up. So yeah.
Speaker 2:Take more than this to keep you down. You just have to be patient. I hope so you all hear me say it. So when he doesn't follow our rules, yeah, I think you do look better than you did Friday, no offense.
Speaker 3:No, no, none taken. Yeah, you looked pretty wiped out on Friday, for sure, friday, I was pretty wiped out.
Speaker 2:Yeah, you didn't remember going to the meeting Thursday or Friday.
Speaker 3:No, I don't.
Speaker 2:No, I wish we knew you wouldn't remember, because then we could get some good juicy stuff out of you Secrets or something. Right, you need to have your wife call about that cough. Don't let it linger, because that could turn into pneumonia If you don't take that out of your chest the hospice is pretty much staying on top of it. Yeah, well, they should have given you mucinex or something, though.
Speaker 1:Yeah.
Speaker 2:You know they'll come in tomorrow. Yeah, I'll be texting your wife later and telling on you. That's what we do. Any updates with you, Sharon?
Speaker 5:Well, Jack has been exposed to COVID quite a bit. His whole memory care unit is taking their turns. His suite mate started it with pneumonia about three weeks ago and then he came down. The guy came down with COVID last week and I got a call I think it was Friday saying that Jack now had it and he actually has been staying in his room, which is very unusual because he's usually peddling around everywhere. But he must have felt bad enough to stay. They're keeping the ones that they can in their rooms and feeding them in their rooms and everything. But between me having my cataract surgery and all of that, I haven't actually physically been there to see them for probably three to four weeks and it's killing me. I don't want to get started.
Speaker 2:I'll start crying, but they isolating them. Now they did, when they're trying to, but it's.
Speaker 5:you know how do you do that? The memory care yeah, it's hard to keep some of them in their rooms and they're all just kind of out there giving it to each other, but I mean letting outsiders in.
Speaker 5:Oh, not necessarily, but we choose as a family to do that because, well, like I said, my surgeries, my grandson with his heart issue, he's got a very low immune system, so we just I see him like a couple of times Caregivers have called me and done a facetime just gonna say maybe they can do that yeah, but he doesn't realize half the time who he's even talking to. But yeah, he'll go around calling. He'll go around calling my name all day.
Speaker 2:But then no, but for you it's because you said you haven't got to see him like you normally do because of your surgeries and things.
Speaker 5:Right, and I'm having the next one April 21st, so that means I won't get to go there for a while yet.
Speaker 2:But you FaceTiming him and you know in your heart, you know you're seeing him, you hear your voice. So I would ask them to do that every other day, if they would.
Speaker 5:You hear your voice, so I would ask them to do that every other day. If they would, and as long as I hear him and know he's doing okay, then that's helpful.
Speaker 2:And you never know. Like you say, sometimes he doesn't know who you are, but just hearing your voice makes him calm down, I think. Thank you, linda. Yeah, that's what I think. That's what I would do if I was in your case, I think they already did that. That's what I think. That's what I would do if I was in your case. They already did that, offered that.
Speaker 5:FaceTiming.
Speaker 2:Right With you. Thank you, yep, because that didn't happen a lot during COVID. Yeah, for sure, it was so overwhelmed then, yeah.
Speaker 2:They suggest that if you're going there to wear face masks, but they don't really enforce it, and so people do what they feel most comfortable with, which is good really yeah, and I think now it's no big deal, like if I choose to wear a mask on a plane or a double mask on a plane or in an airport, like people don't even right, nobody thinks twice yeah, right, which I think is a positive thing. Again, out of COVID, you know, I just wish the people that knew they were sick would wear it. They don't always, they don't always do that, but right, and if I'm in a place that's very crowded, you know, because last summer I had mono, then caught COVID because I went to a stadium, high school stadium, yeah, so it's. And I have a dear friend who's battling cancer and I will wear a mask around her too, and she's like you don't have to, but I will.
Speaker 5:Well, yeah.
Speaker 2:I would want to too. So you don't think you would like double mask up and just go into Sam, or you want to hold off to the next surgery?
Speaker 5:I think I need to hold off, because what if something gets in my eye even? Yeah, I just don't want to take chances and I can't wait to have the next one and get some normal glasses. These are readers cheaters and it's like off and on all day now until I get the prescription. Yeah, but at least I can see long distance. That's good, yeah. And I'll be able to drive again. That's good.
Speaker 2:What happens when you get cataracts fixed. You can see long distance.
Speaker 5:Well, yeah, it depends how they fix it. Like the right eye, I wore glasses mostly for reading, but, um, I still need something for reading, but yet I can see further clearly with both eyes. Now, I mean, you know, with using the right eye.
Speaker 2:Yeah, there is. How many else to explain it now? I totally understood that. How many people with a levy body have cataract issues? I haven't heard anybody have cataract surgery did you have the surgery right?
Speaker 1:yeah, my, oh, I'm sorry, hold on say it again, my left eye about I don't know two, three years ago. It was getting to the point where I the way I gauged it is I could see the TV because the TV is big but we used to have like a TomCast control box underneath. That had the time. It was getting to the point. I couldn't read the time anymore you know, my normal sitting position so I went and they determined that my left eye was the worst of the two.
Speaker 1:So we did the left eye and it worked. It worked well. Unfortunately, a month later I had complications, so that's why I've been reluctant to go back for the right eye. But as Sharon said the day after surgery you know because you go back immediately and he took the bandage off I hadn't seen that well since. I was like 12 years old.
Speaker 5:That's neat.
Speaker 1:For the long distance. So today the upper part of this lens is pure glass, bottom part is for reading. Wow, and this one is the combination of both, because I haven't had it done yet All right, all right.
Speaker 2:Did you have cataract surgery?
Speaker 3:No, I was going to say Sam had his. Okay, bruce, please yeah, you know, him and Tracy, both did oh, recently you're saying uh, I think, sandy, quite a while ago oh, I thought you said recently has anybody else had cataract surgery?
Speaker 2:that has Louie, that's here.
Speaker 1:No, I'm in trouble with my dog no, but it's easier for teachers to tell when they're having that problem, because when they go to class and start teaching, they lose control of their pupils.
Speaker 5:Oh my gosh, Tom, oh my gosh. Now, that was a good one. That was excellent. Yeah, where did you pull good one? That was excellent. Yeah, where did you pull that from? That was good. He stays up nights thinking of these.
Speaker 2:I'm telling you you could be a stand-up comedian, mister. Yes, he could. Yep, I'm sure everybody. So what? You have dementia and just everybody laughs. Yep, wow, that was a z zinger. That was a really good one. How about?
Speaker 4:you, liz, how you been feeling. Um, well, I over the weekend I I worried and worried and worried about, uh, what's going to happen with my doctor important tomorrow and starting testing, imaging blood work, all that for heart, uh, low heart rate. And I've talked to a couple people who knows and one was a retired neurologist and somebody else they said go get a pacemaker. I don't want a pacemaker, mostly because to have one I can't get any imaging done the rest of my life and I want to be able to get imaging, see how I'm doing at some point.
Speaker 2:Don't they make pacemakers? I have a stimulator in my back and I said I don't want it in if I can't get an MRI. And there's one that I, when they put it in me, I can have an MRI as long as it's turned off.
Speaker 4:I can't imagine they don't have the same thing nowadays for pacemakers well, the neurologist was telling me that that's how it is, that, um, she said what, what she wanted to be able to do, and they said it or made it or whatever, um, so that that could happen, and I thought she didn't know what she was talking about. The big thing is have a pacemaker because you can live again, you can lose that fatigue and serious weariness and get around, do things you want to do, that kind of thing, and I'm all for that listen.
Speaker 2:I just looked it up. Nowadays it says fortunately, most pacemakers and icds are now mri compatible. You need to find somebody that will put that, because I can't imagine, because I've had this in my back for four or five years. I've had MRIs with it. You just I just have to make sure it's off and I have to give them some code off of it before I can go on an MRI Now and then another one. Yes, there are pacemakers designed to be compatible with MRI scans, so I would just make sure you find somebody that can do on it.
Speaker 5:So look up Inspire for me, because they told me no MRIs. Are there different kinds of MRIs?
Speaker 2:I think different is if they inject you with something versus not injecting you.
Speaker 5:But it's a magnet right, magnetic thing. But it's a magnet right the magnetic thing.
Speaker 2:Yeah, I had one done when my back was first blown out and I had my. I left my shoe, my teacher dressy shoes on and I didn't know the heels were now on and that machine was on and my body went. Oh my gosh, oh my God, and I was like inside of it. I'm like not the best thing for somebody who's got a blown disc and now just make sure you take off your shoes. Yeah, wow, yeah.
Speaker 5:But I can't imagine with Inspire too, like nowadays they just said no MRIs, but they said there are some that you can have. But I don't understand. I thought an MRI was an MRI. If you have model 3028 implant you can undergo a full MRI. What is that model? Did they say? This has been three. It'll be three years in August.
Speaker 2:I don't know. It doesn't say but Well, if you have a model 3024, it's not eligible. 24? 3024, you can't, but if you have a 3028, you can.
Speaker 5:I will be looking up my model number.
Speaker 2:That's a model number right, I just wrote inspire, can you get an MRI? And it came up. Yeah, okay, I'll look at it, Thanks, yeah, I just can't imagine nowadays that they don't have stuff that's compatible with imaging. Yeah, that's good news, liz find one.
Speaker 4:That's good it is, and you'll get that put in and then you'll have energy and not worry about you know, I'll get out and, uh, get some gardening done.
Speaker 2:Yeah, there you go it's gonna be life we hope, after listening to the three-part recording of one of our support meetings, that you consider joining in. Joining us in one of the meetings mondays and fridays at 11 30 eastern is for those with louis body dementia or and or caregivers, so it's a mixed group. Thursdays at 4.30 Eastern, the meeting is for those with Lewy body dementia diagnosis or those seeking a diagnosis. And Saturdays at 3 pm Eastern is for spouses, but some weeks on Saturday there's a mix of caregivers and not just spouse caregivers. Dory, who runs those meetings, always posts a reminder on the day of the meeting for caregivers as well.
Speaker 2:A special shout out to Megan, who also posts reminders about all the meetings. Curry and I couldn't do this alone and we are so grateful to all of you who volunteer to help, from posting info about meetings posting positive messages every day. Thanks, julie. And to Ray and Megan for making suggestions for Zoom meeting attire for special days, just to make it a little more fun and just remember we're all in this together and need to lean on one another.
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 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. 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 louisbodyrollercoaster 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, 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.