Lewy Body Roller Coaster
Lewy Body Roller Coaster
Navigating Symptoms and Finding Joy with Ray Augusti- Part 1
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Welcome Ray this week.
In this episode, we tackle the complexities of managing Lewy body dementia, from handling tremors and balance issues to dealing with unique symptoms like a persistent runny nose. Ray shares how activities like Rocksteady Boxing have been transformative for him. We also explore various remedies for those pesky muscle cramps, including some unconventional and amusing methods. You'll leave with practical advice, heartfelt stories, and maybe even a new trick or two to try out. Join us for an episode filled with wisdom, community spirit, and a touch of humor. Thank you all for your continued support and patience with us as we try really hard to get a new podcast done- hoping we get one a week but as you all know, Lewy and life sometimes get in the way. We know you all understand and support us anyway and for that we thank you!!! xoxo
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Welcome back podcast family.
Speaker 2Yes, welcome back y'all.
Speaker 1And, as always, thanks for being so patient and supportive. And before we introduce our guest today, we want to remind all our listeners that we are not giving medical advice. We are just sharing our open and honest feelings and thoughts as we live with Lewy body dementia.
Speaker 2Okay, folks, now is when I usually thank individuals who have supported us in doing this podcast, but this week we thought we'd thank all of you this time, so we wanted to let you all know that we really appreciate y'all's support, and here's a big thank you from podcast Linda and myself. Thank you, and we hope we are doing our job to your satisfaction.
Speaker 1Yeah, Wow, that quick. I was going to say something right out of my head. What was I going to say? Curry, you know I have no idea this time. Lord it was important too. All right, I'll write it down if we're talking later. Anyway, another reminder about our four weekly Zoom meetings. All the Zoom meetings use the same link that's under the announcements on both of our Facebook pages. Really hope you consider joining in one of the groups and we're going to talk about that a little bit later on.
Speaker 2Okay, I'd like to give another reminder that we're only sharing our experiences, not giving any medical advice. We're only sharing our experiences and personal journeys. So let's get this thing started today, this week. Please welcome our friend Ray Auguste Ray, could you introduce yourself, tell us where you are from and how long ago you were diagnosed and how old you are, and anything else you'd like our listeners to know about you and your wife Rose? Then we will ask you some questions.
Speaker 3Well, thank you very much, Curry and Linda. First of all, I'm very honored and privileged to be able to participate in this podcast, and privileged to be able to participate in this podcast and hopefully some people might hear something that may be of benefit to them. So, with that, my background is rather simple. I was born in 1947, so mathematically that makes me 76 years old and I grew up in a small town. Well, at that time it was a small town called Wayne, outside of Patterson, New Jersey. I was actually born in Patterson, New Jersey, and spent the first three years of my life there Growing up. I would be characterized as and you're going to laugh at this shy, withdrawn.
Speaker 1This is where we wish Zoom. We wish we didn't just record. You got to see.
Speaker 3Linda's expression, I'm like what? Well, let me explain. When I'm in a crowd of people that I don't know or feel uncomfortable with, I can tend to be very withdrawn, like I have gone, even in high school, to social events, like you know dances and hops and all that kind of stuff and if I didn't feel comfortable, I could go three, four, five hours without saying a word Okay. Three, four, five hours without saying a word Okay. However, I do have a Jekyll and Hyde tendency that once I feel safe and comfortable and welcomed by people that I know, I do have a slight tendency to talk too much and sometimes ramble off a topic. So I want all your listeners to know that I've already given Linda and Perry permission to virtually kick me under the table If I tend to go in either of those directions.
Speaker 1I'll just say squirrel, squirrel. Did you hear that Squirrel? Well that explains.
Speaker 2We were talking about gas prices while ago and that I I was wondering why you said when you started driving it was 30-some cents a gallon. When I started it was 22 or 25, because you were in New Jersey and I was in Oklahoma.
Speaker 3Oh yeah, unfortunately, New Jersey, pennsylvania, connecticut, massachusetts they have very high state tax on top of the gasoline tax.
Speaker 2Yeah.
Speaker 1What I don't understand, though real quick, is because now I moved from the Jersey to Pennsylvania, this whole pumping your own gas thing is a little.
Speaker 3In the old days, everybody had to have a service attendant pump it, yeah, but then gradually, a lot of the states realized that it really wasn't of any benefit to the economy meaning they weren't high-paying jobs and they phased them out. However, new Jersey had a strong union behind their, so gradually it ended up that New Jersey in fact, even today I think New Jersey is the only state in the union where they pump the gas for you Oregon, oregon. Oregon too, one of two states. So you know that's two out of 50.
Speaker 2Yeah, I used to be one of those guys that pump your gas, check your fuel and wash your windshield and then wash your car if you needed it.
Speaker 3That's what I was doing at 14 yeah, well, in those days they even offered to check your oil if you wanted to put air in your tires. Oh, yeah, uh, I mean, it was actually a full service thing. Well, all you were doing was buying gas and, and when they were desperate, they would even give you either trading stamps or you could get mugs and glasses or whatever free giveaway, just to fill your car up with gas.
Speaker 2Yeah, yeah, I went to work there. Oh boy, I had a 1949 Studebaker pickup as a service truck, yeah, and he wanted to sell it and I went to work for him to pay off that Studebaker and that was my first vehicle.
Speaker 1That's cool. That's cool, that's cool. Sorry, I just had to interject the whole get pumping gas thing, that's all right.
Speaker 2Ray, can you share with us what your first symptoms were that you had to seek a doctor's?
Speaker 3Well, if you talk to my wife, she'll say I've had this for eight to ten years. If you talk to me, I thought I was just getting old and slowing down, all right, meaning that was my mindset at the time. Uh, what actually triggered it? It made me aware that there was something in my mind medically wrong was when I started developing tremors in my left hand. At that point, rose, who's very proactive, and my caregiver and my wife immediately got me to see my primary, which fortunately is also an internist, so it's a little higher level and she referred me to a neurologist.
Speaker 3Now, those of you who know about neurology, the waiting list is usually a year, year and a half to see somebody and you could be severely impacted during that time you're waiting. So, with a little bit of luck and I don't know exactly how, but my miracle worker wife got me an appointment in two weeks. Oh, wow, right. So within two weeks of seeing my primary, I saw a neurologist. We had an exam in the room. Basically, walk around, click your fingers together, rotate your limbs around in circles and stuff like that. Stand up straight, show me how you get up from this chair, walk up and down the hallway from the examining room and then they basically said yep, you got it.
Speaker 3Well, in my case they called the Parkinson's first. He says but then we're going to send you for an MRI to see if you have any other further complications. So within two weeks of that visit I had an MRI, which I affectionately call the bang-bang machine Of course it's the place it makes. And 20 minutes later, plus a phone call from the doctor, he says well, you also have lewy body dementia. Uh, the only thing that did come out of that test that was positive was uh, he said that my brain hadn't shrunk. And I sort of kind of laughed. And he says well, as you get older, your brain shrinks. And he says the only positive side is that my brain has not shrunk from my age and that's a good thing because I guess it helps fight off the condition I have.
Speaker 1So he told you this from the MRI results.
Speaker 3Yes, purely MRI, apparently. And again, I'm not an expert, you people know better. Again, I'm not an expert, you people know better. I believe Lewy body dementia. Does that have something to do with the folds in your head and the chemicals around them? Yeah Well, apparently, from whatever he saw, he said I've got Lewy body dementia on top of my Parkinson's.
Speaker 2Yeah, he'd probably just use an MRI to rule everything else out.
Speaker 3Right right, no tumor or cysts or abnormal. Yeah, he'd probably just use that MRI to rule everything else out. Right right, yeah, no tumor or cysts or abnormal.
Speaker 1Yeah, that's why I was asking that. I was like he can't relate to it. It makes sense.
Speaker 3So, fortunately for me, within a month, month and a half, I was back with a neurologist, getting on meds which again I could have gotten nine months to a year and just know I'm sick but not know what to do.
Speaker 1Right Now. How long ago was that?
Speaker 3My wife says it was January 2023 that we saw the internist. Okay, according to her, I was exhibiting symptoms as much as, like I say, eight, uh, ten years ago. The symptoms were lack of motivation, lethargic, uh, sleepiness, uh, sometimes change in mood swings, irritability, uh. Then then, as it got closer to 2023, I started started getting into acting out my dreams at night, physically, sometimes shouting in the middle of the night, scaring the daylights out of the wife. Then it got even worse.
Speaker 3I don't know if I fell out or jumped out of bed twice, twice, uh. One time, uh, I just banged my elbow, but the other time I banged my head on the uh dressing stand and I ended up in the emergency room with a huge black eye for about a month, all right, and you know they had to check me out, make sure I didn't break anything in the facial bones or concussion or any of that. So at point, we immediately ran out and bought bed railings and even today I sleep with one of those super long body pillows that people sleep with that you can hug onto. I don't sleep with it, but I put it on the floor. I figure the next time I'm on the floor at least I'll land on something soft.
Speaker 1That's a good idea. That's a good idea. So you're recently diagnosed.
Speaker 3Yes, and then, regarding how I got to this group, as soon as I was diagnosed, my mother, my mother, excuse me, she'll kill me my wife.
Speaker 1Oh, my goodness, you need to stop and back up the bus, mister, because I'm telling Well, you told me you were going to edit that part. I'm telling on you.
Speaker 3Anyhow, she immediately started investigating, using the Internet, anything she could find out about Parkinson's and Lewy body, mm, hmm. So somehow, through a reference of a friend, of a friend or maybe one of the associations directly, they mentioned your podcast and she looked into it. Now she joined the Caregivers podcast, which I believe is Saturday afternoons yeah, the Zooms. And she did that for I'm going to say six months or so, and she did that for I'm going to say six months or so, and every time she'd come up from the basement, which is where I do the zoom stuff, she would say oh, you got to join the other group. You know where the, the, the actual people with the disease are at and, of course, me being a lethargic and you know lack of motivation, etc. Etc. I would just sit there and watch TV instead. Eventually she got me to the first meeting and then I got hooked on all this wonderful family-type environment and I've been here ever since.
Speaker 1Yeah, yeah. We always say we encourage people to join, but until you join and you realize you know should have joined sooner, kind of thing.
Speaker 3It's like potato chips you just can't have one.
Speaker 2Right.
Speaker 1Oh, you call me a potato chip. No, no you called your wife, your mother and now I'm a potato chip, okay.
Speaker 3Here. If you're nice, I'll share my pig nail polish with you.
Speaker 1That's well remind me to talk about the nail polish at the end, Cause everyone's like nail polish, oh yeah.
Speaker 3We're going to keep all your listeners in limbo, particularly the ones that remember. I know a small group of you who zoom, but I also know that there's almost 2000 members to this group and I'm sure a lot more are going to listen to this podcast. So if we happen to say some what I'll call inside jokes, it's only because we see each other four and a half hours a week, every week on Zoom.
Speaker 1And we keep going back, absolutely.
Speaker 3If we don't get together or we have to miss it for a doctor's appointment. I'm so depressed.
Speaker 1That's the nicest compliment anybody's ever given us right, curry?
Speaker 2It's true.
Speaker 3It is. I look forward to everybody in the group. I mean, everyone has a unique personality and I'm sure we all know who we're talking about and we look forward to seeing that personality each and every time. And when they're absent, the first thing we say is where's so-and-so? Because that personality is missing this week yeah, true, car.
Speaker 1You want to jump to top of page three?
Speaker 2you man? Yeah, uh ray. What has been the progression of your symptoms since being diagnosed and also, what symptoms are you aware of that aren't usual behaviors for you.
Speaker 3Well, being diseased is not a usual behavior for me. What was the first?
Speaker 2question what has been the progression of your symptoms since you were diagnosed? We'll start with that one.
Speaker 3Yeah Well, fortunately, because I didn't have to wait such a long time to get on meds. As soon as I got on meds, all those things that were symptoms going into the reason I went to the doctor in the first place, were either diminished or eliminated. Diminished or eliminated. Now I still have, and, again, some of this is from parkinson's, some of this is from louis body. Uh, back in 2010, I had prostate cancer and then, like all other people, I have a a small list of other normal things that people get as they get older. Okay, but, um, as long as I'm on my meds, uh, I've never had hallucinations, so I'm thankful for that.
Speaker 3I do have tremors, usually my left hand, almost constantly. Uh, occasionally, if I'm stressed out, it may migrate to my right hand, uh, my mind. I try to keep busy in different ways and I'll be happy to explain that later. I walk with a stuttered gait, probably because my Parkinson's is more than the Louie. I have very poor balance on the one foot. If I have two feet and a small space between them, I'm okay, but ask me to do a balance beam and I'll be on the floor.
Speaker 2Do you use a cane or a walker?
Speaker 3No, I do not. Oh wow, but I'm careful in what I do. When I go up and down, I'm in the basement. Now, when I go up and down the basement I hang on to that railing with dear life. The last in the basement. Now, when I go up and down the basement, I hang on to that railing with dear life, because the last thing I need is to fall down a flight of stairs and get injured.
Speaker 3Because I hear too many stories of my friends in these zoom groups and and you can really get injured. I mean, I had my, my, my sister, who doesn't have any of these diseases. She was getting on a bus in arizona one of those kneeling buses that goes down and then gets up, and she misjudged a step and she fell backwards and she broke her coccyx bone. So I mean, you know, that's how simple. You know how quickly an accident can happen. So when I go to the doctor they say, have you fallen in the last three to six months? I very proudly say no. But then I follow it up with. But you don't know how hard I work at it to make sure it doesn't happen. So I just don't skip down the street and say, hey look, I didn't fall. I make sure I'm looking where I'm walking. There's nothing in front of me, nothing coming from the sides, and I'm not running. I'm walking.
Speaker 1Yeah, well, that's good, I was just going to say that's good to always have that on your mind, yeah.
Speaker 2I just wanted to ask you.
Speaker 3Do you have any symptoms that aren't usual behaviors of Louie, aren't usually behaviors of Louie? Again, having both and not being an expert, I don't know which ones are which I think there's an overlap. I mean, I have cognitive issues particularly, and this is something that's strengthened in some of the groups. Other physical groups I belong to, like Rocksteady Boxing. Apparently, people like us have difficulty when you have to do an action, a motor action that crosses the two hemispheres of the brain, like lift your left arm up at the same time you're lifting up your right leg Okay, because it's a cross connection, and so they do a lot of exercises and works on that. From a cognitive standpoint, they might have.
Speaker 3You put some puzzles together. We'll play a game where I'll have a soft rubber ball and we're sitting in a circle and I'll pass it to you, but before I pass it to you I have to say your name. Well, that's one version, but the harder version is each person up front picks a physical hand signal that represents their name. So now, when you go to pass the ball, you don't use their name. First of all you got to do your hand signal and then you got to do their hand signal and then throw it to them, which is a lot more strenuous on the brain, but it's good exercise.
Speaker 1Yeah, yeah, I think I knew where you were going. Curry, Like, did he had any symptoms that weren't on the official list, right, yeah, yeah, well, I have one that all the time we bring up constant runny nose, nobody lists that.
Speaker 3And when I say constant, sometimes it'll run 15 minutes straight. Other times it'll be dry as a bone, all right, but when it runs it literally runs like you wonder where all this liquid's coming from. Right, I can go. I can go through a pile of tissues and, you know, a box of tissues in 15 minutes if I can say jim had the opposite.
Speaker 1He had such dry nose that he would squirt saline up it. Um curry do you have? You don't have the runny nose, right?
Speaker 2I do at times.
Speaker 1Okay at times, isn't it?
Speaker 2but, but in in regards to that, mine. I've always had bad sinus problems, so mine could just be my sinuses.
Speaker 3Another thing I've noticed, though, and you know normally, when you have whatever you want to call it, the gook in your eye, usually like a mucousy, tacky stuff Well, recently, or since I've been diagnosed, it's like grains of sand. I've been diagnosed, it's like grains of sand, so when I have to get things out of my eyes, it's like literally picking up salt grains out of my eye using my fingernail, as opposed to before you use a tissue and pick up the glop. So you know, just. You know how we all clean our eyes once or twice a day to see better.
Managing Muscle Cramps and Remedies
Speaker 3uh, it's a totally different environment yeah sometimes I get cramps in my legs at night. I don't have restless leg syndrome, but I can get like a muscle cramp. The muscle just fires and relax. Uh, and again, my wife has some creams I put on as well as some pills I can take. Uh, again, I don't know if they're consistent or not consistent with either of these diseases.
Speaker 1Well, you just made me Jim. I can remember him just getting up out of the bed and just pacing and I'll be like what's wrong. And he's like looking back now he's like I got a cramp, got a cramp.
Speaker 3Oh yeah, and it could be the simplest thing, like when you're getting. It can happen while you're sleeping, or it can happen like I have to get up to go to the bathroom and as you do that we'll say you curl up your your ankles to help push off the bed to get out, all of a sudden that ankle cramps up and you can barely put it down on the floor. So I mean it can occur with you knowing it or without you knowing it.
Speaker 1Yeah, yeah, I read something the other day.
Speaker 2I don't know if it works or not, but they said, put a bar of soap in between your sheet and your mattress and it takes away the leg cramps.
Speaker 3Well, that's good, anything's going to work. Yeah, I don't know its effectiveness, but it's worth a try, yeah.
Speaker 1Touch your nose Ray, real quick. My nose Just touch your nose. Last person to touch your nose has to try that under your pillow. Oh is that the way it works, okay?
Speaker 3I'm like you, go ahead and try that Curry and next time we record, tell us how it worked out. I've also heard if you go to sleep with a chocolate bar under your pillow.
Speaker 2that works very well, I can do that.
Speaker 1It gives you sweet dreams. Oh, oh, choo-choo-choo. That's all the time we have this week with Ray and we'll pick up with part two next week.