Lewy Body Roller Coaster
Lewy Body Roller Coaster
Navigating Symptoms and Finding Joy with Ray Augusti- Part 2
Welcome back to part 2 with our friend Ray .
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.
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Welcome back to part two with our friend Ray. Let me jump to the next thing we wanted to talk about, and you've said how you started attending some of the Zoom meetings, and I, for one, want to thank you for always being positive and making others laugh. While we all support each other, we do have some characters in the group and characters in a good way, saying that in a really good way. So how do you find the support meetings online? Well, you said that your wife found the meetings for you, but, um, because you you mentioned there's like 3 000 people that are belong to the groups. How come there's not?
Speaker 3:well, I guess that would be a pretty big zoom of 3 000 people yeah, yeah, I wouldn't want to see the size of the squares when you put it on the world tool for that.
Speaker 1:But you're all welcome. But I guess what I want to ask you, because we know, we've heard you know people are nervous because they've never done zoom. Were you nervous at first? Um, because I, I asked people and they well again my, my shy disposition.
Speaker 3:When I first came to your group, I didn't know anybody and, if you remember, I probably said two words other than when you addressed me. You would, you know, be kind enough to say ray, you're the new person, you have anything to say? But other than that, even though I may have had comments on what other people were saying, uh, I was not of the nature to voice myself. Now that I know everybody, uh, and they know me, uh, they're the first ones to tell me Ray, shut up, I mean, it's that kind of thing. But no, I found very quickly that the kind of people that were there, number one, uh, they were not afraid to talk about their most innermost issues with their lives.
Speaker 3:Like you always say, we talk about everything from A to Z and uh, uh, we're very open about it and, believe it or not, everybody else in the group has gone through it or some version of it. And, uh, denial is not part of the, the, the charter of the group. So, uh, we try to address whatever issues we have, share information. I mean, every time I come away from a meeting and Linda and Curry and Megan know this quite well I have a little notebook that my wife gave me and every meeting I write down everybody's name and if there's anything new that I learn about that person or associations and so on and so forth, or any new medicines that they bring up that they read in an article, I write them down and then after the meeting I pretty much do a recap for my wife and, if it's interesting again, my wife's the first one to hop on the Internet and research it.
Speaker 1:Yeah, I told you that Jim used a little purple book he had and every day he would start over and write everybody's names down in the same thing something little, but I like that you go upstairs and you share with Rose. Oh yeah, it keeps your mind going.
Speaker 3:I'm sure we're going to cover this, but I think it's important that this is not something anyone needs to be ashamed about. We have a disease no different than somebody has cancer, somebody has psoriasis, somebody has MS, somebody has, you know, lost a limb and has a disability. We just happen to encounter this as a part of our lives. So the first thing I would always say is throw away this thing about denial, because it's not going to help you, it's going to hinder you, your recovery and moving forward. Always try to talk about it as opposed to not Remember. I first had cancer before I had these conditions. Back then it was like are we going to tell anybody? We're not going to tell anybody. Well, I found two things. One, I would only talk about it to the people that I felt could handle it, the people that I felt could handle it, meaning you have to somewhat be selective, in that not everyone either understands it or wants to know about it. Some people are skittish or cares to know about it. But those who do I had no problem whatsoever telling my in those days, my eight-year-old grandchildren that I'm sick Of course they do say well, are you going to die? I mean, that's their relationship and I say, well, I don't plan to. I mean I don't want to lie to them but at the same point I don't want to give them negative feelings that they're going to be sad all the time Because, in all fairness, with prostate cancer they consider it a success if you live five years.
Speaker 3:So after I had prostate cancer, a lot of my mental attitude changed because in my mind I was living on borrowed time. So every year that went by and I had a good checkup with my doctor, I had yearly visits. I just said, well, that's another year under my belt. And then when we got around year eight, I started feeling real good because then they started telling me well, based on statistics, you've got less than a 5%, 3%, 2%, 1% chance of recurring. And now it's 2024, so I've been cancer-free for 14 years.
Speaker 3:But all during that time I've tried to keep a mental attitude saying hey, you're already on borrowed time. Meaning, if I were to die tomorrow, I still outbeat the odds by 14 years. The same thing with this disease. Meaning, if I were to die tomorrow, I still out beat the odds by 14 years. All right, the same thing with this disease. You know, if I were to die tomorrow. All I say is well, I had a great life. I had a great family. You know I had people I cared about and loved in my life, but I'm still on borrowed time from 2010.
Speaker 3:That's a good way to look at it borrowed time from 2010.
Speaker 1:That's a good way to look at it. Well, it's just like we say, you know, when new people come in and they're all distraught because the doctors give them that five to seven year number, that's just the number. Yeah, I mean Kari's still here. Our friend Robin is like in year eight or nine. So it's just yeah, that's a good way, the good outlook you had with your cancer.
Speaker 2:But now and it's like Mike Matherly is like in his 15th year.
Speaker 3:Yeah, Well, I look at it this way If I live another 20 years, I'll be 100 and something, so it's okay. If I die, then Sorry.
Speaker 1:So I just wanted to ask you that about the Zoom.
Speaker 3:Oh, I think it's the greatest. I tell everybody about it. Like I say, I also belong to and I mentioned this many times in our Zoom groups a thing called Rock Steady Boxing, which I would recommend to some of your people the Lewy Body people as well, even though they don't have Parkinson's Plus. It really helps in all the same areas of physical balance, agility, memory, all those kinds of things, and it also gives you another group to interact with. It's true. It also gives you another group to interact with, it's true, and unlike our group, which is scattered through Zoom, I actually go to a gym and I participate with a dozen people every three times a week. So you know it's also a different type of community.
Speaker 1:Yeah, so I'm going to jump to that because we were going to ask you about that. Okay ask you about that. Okay, um, so can you tell us like, how you found who, who suggested rocksteadyboxing, and then just how often you go and well, I think, I think her name is rosie rosina, my wife.
Speaker 3:It all goes back to my wife. My wife is is a great caregiver, uh, having a background as a teacher, which all the teachers I know that listen to this group know. They're all doers. They follow up, they do the research, they evaluate and then they recommend. So she is kind enough to do all that for me, and then she proposes it to me and I'll either agree or disagree, and then, when she's done with me, I'll agree.
Speaker 1:You're a good husband. She has taught you well.
Speaker 2:I'm glad you brought up that rock steady boxing because I was going to. I didn't realize it was already in the script, but I was going to ask about it too.
Speaker 3:Oh, you can ask any questions you want.
Speaker 2:I'm an open book. So what do you do there? I mean, do you actually box and hit?
Speaker 3:okay, I go three times a week monday, wednesday and fridays in the afternoon, and the reason it's the afternoon is purely a function of the scheduling in the gymnasium. All right, it's actually not a gymnasium, it's a martial arts center and that's the available time they had when they wanted to start this program. And actually the way they started the program was there was a woman who was taking martial arts and then she was diagnosed with Parkinson's and she wanted to find out what kind of exercises and stuff she could do. And then she found out through the Parkinson's association that they have this formal course called rock steady boxing. So she proposed it to the person who runs the martial arts and he says, sure, let's just find a day that's available. You know that doesn't interfere with all the other martial arts training and those are the days.
Speaker 3:So I go uh 2, 30 to 3.30 on Monday, wednesdays or Fridays, and what it consists of is they actually have two levels of group those that are more mobile and physical and those that are less mobile and physical, and I'm in the lower group. But what you start off with is you sit around in a circle and you basically just, you know, have some chit chat and say hi and we have a word of the day and she makes up some questions and we go around and each answer. But then after that they do and it varies, which is great. It's not the same every time swing your arms around, roll your wrists around, get behind your chair, stand on one foot. Let's walk around the gym three times, let's do modified jumping jacks, because most of us can't jump in the air anymore. So the modified jumping jack, all right. And then, after we call that the warmup, they'll have actually exercises that are called workstations. One workstation might be shooting a basketball into a hoop, another one might be hitting a speed bag with a boxer, another one might be walking a foam balance beam and another one might be standing and trying to stand on this curved dome rubber ball type thing without falling off, and all those kinds of things.
Speaker 3:Then, so that's half of the hour. Then you switch and you actually do put on boxing gloves, and this is the part where, again, they're trying to do not only the physical part, but the kind of strokes they give. You always alternate between left hand and right hand, so that's where you make all those connections in your brain. They'll say we're going to do pattern number five, which happens to be uh, jab, cross, uppercut, cross, hook. So not only do you have to remember it and physically do it, but you have to, your brain has to do all those functions. All right, so you know, and again they vary the pattern. So the most important thing, I think, is that whatever they do each day, both in the the first half hour, the second half hour, is neither the same, otherwise it becomes boring and dull yeah, and right, as a test your brain and in between, just as we do or we try to do in the zoom group.
Speaker 3:We clown around a lot. I mean, you know we all make jokes we're not afraid to talk about we have this or we have that, or what's your medication, or how come you're on this and how come I'm on that and you use a patch and I use a pill and you don't use it at all. So between the two I think they complement each other. You know one does not replace the other and vice versa. But I think at least I'm very happy with the regiment. You know, four and a half hours with Lewy Body Zoom a week and I've got three hours a week with Rock Steady Boxing.
Speaker 1:Yeah, I think that's. I knew we wanted to ask you about that. And just while Ray was talking, I just Googled Rock Steady Boxing near me and their official site that asks you to put in your zip code and how many miles you're willing to travel. So I've been trying to get somebody from the corporation to come on, I'll try again.
Speaker 3:Yeah well, you just mentioned something very important. This is not an ad hoc type of group where everybody does it different. I actually had to send somebody from the martial arts center to I think it was Illinois for a week of training and that became I forget they gave her a title, yeah, but then she was certified to represent the program within that particular athletic activity and then she was also authorized to be able to train the other coaches to do the same thing. You have to have at least one certified people by the organization which again is part under the umbrella of Parkinson's Right, or else you can't do it. So it's not like I think I'll open a gym and we'll get Parkinson's patients. You have to be trained and certified.
Speaker 1:Yeah Well that be trained and certified. Yeah Well, that's good to know. So hold on a second. I just lost my train of thought.
Speaker 3:Remember, Linda, it's Curry and I that have the disease.
Speaker 1:We've had this discussion many times recording. I'll say what was that person's name and Curry will be like oh, that was Joanne and she's from blah blah, blah, blah blah. And I'm like who, which one? What?
Speaker 3:Yeah, I do that all the time with my wife. If I forget something, I blame it on Louie. When she forgets something, I say which one of us has the Louie? So of course her answer is well, I have Louisa the sister.
Speaker 1:Yeah, yeah, many spouses are called Louisa for sure. But before we jump into your next question, carrie, to jump back with the meetings, that you can come like the Monday any of the meetings if you want to come in and just listen. You know people are nervous at first and once they get to hear everybody talking I think nine times out of ten their camera eventually goes on.
Speaker 3:Yeah, you don't have to have the screen on. Yeah, you're shy, mm-hmm.
Speaker 1:Or you just say we have people that are having a bad Louis day, but they just wanted to hear.
Speaker 3:That's right, you don't feel well, but you still want to participate.
Speaker 1:Right, so you attend the Monday Friday meetings which are for people with Louis body, their caregivers, or you're seeking a diagnosis? And then Thursday afternoon with just the Louis buddies, those with Louisie Buddy. I wanted to know if you can share with our listeners what you see the differences are in those meetings. Name a thing or two that you find most powerful about each group.
Speaker 3:Okay, well, the one with the caregivers is great because you can get two sides of the story, meaning sometimes people tell what they want people to hear but it may not actually was truly happening, and usually the caregiver will correct them and say he's not quite accurate or he's full baloney. All right, which is important that we, we be truthful to each other. Uh, and the thursday group, it's just us that have the disease, and sometimes what happens is we may talk about things that are a little more personal or may actually be involved in our relationship with our caregiver, and, uh, we would be hesitant to do that in the other group. And then sometimes we actually talk about the health and well-being of the caregiver themselves, because they go through quite a strain putting up with us.
Speaker 3:Now, my wife tends to be a little even-keeled and jovial to start off with, but I mean, I could see I could be a real irritant if I had a spouse that wasn't the same nature as she is, because, uh, it would just drive that person crazy. So so you know the the thursday group, I think we get a little more intimate as to our real inner feelings or difficulties and how we feel good or bad, on how it's affecting our spouses or our extended family you know, relatives, kids, etc. The future of our lives and their lives, which you know you may want, want to jump right in with your spouse about. So so yeah, there's things we talk about and we've all agreed on this that we, as people who a year ago didn't know each other, know more about each other than a lot of our family members, and I think it's a testament to how welcoming and warm and supportive your group is.
Speaker 1:Yeah, yeah, we say, once you come in, you're stuck with us. But you really do become like a family, and when somebody doesn't show up for a meeting or two, somebody's always reaching out to that person.
Speaker 3:It's usually the first thing the people say is where's so-and-so today? Oh, you can get the meeting going If you're not there in the first five minutes. If I want to know why you're not there yeah, we don't hound people.
Speaker 1:We just like okay, somebody's gonna check in just to make sure everything's good, and you know, usually it's. I just think it's funny. Nemi from from ireland will say I'm going on holiday for two weeks, so don't stress, because we've always checked in. All right, kerr, you go. Next question.
Speaker 2:Hey Ray, you're basically in the beginning of your Lewy body dementia diagnosis. Can you share with others how you've stayed positive, even after getting your diagnosis or while you were seeking your diagnosis? You know, as you all know, I always say you have a lot of good life left, that there's a lot of good life left after diagnosis. You know, as y'all know, I always say you have a lot of good life left, that there's a lot of good life left after diagnosis. We just learn to live it differently now. So can you respond to that first question?
Speaker 3:Sure, I'll be happy to. Well, I think the first thing, uh, and being successful moving forward is I mentioned it earlier is this thing with denial. Yeah, if there's one thing I've learned in my life's experiences is that number one life is not fair, so don't use the. It's not fair. I got this. I'm not fair. I got that. How come this person didn't get it and I got it? You know I'm going to use a somewhat crude term, but get over it. All right, it is what it is, uh.
Speaker 3:The second one is uh, bad things do happen to good people. Meaning, I think we all know people that are angels personality-wise and unfortunately they're angels in reality. Now, all right. And at the same point, we know people that are real stinkers and unfortunately they're still on the earth every day. And you know, that goes with the first one life isn't always fair.
Speaker 3:The first one life isn't always fair. But if you come to grips with those two, then the third one I try to go by is if I have to move forward on a daily basis, do I want to hang around people and activities and things that have negative energy or things that have positive energy? Because negative energy there's plenty of it out there. I mean, just listen to the news every night, all right, or listen to stories from you know relatives that have sick other people, but I always try to look at whatever, whatever little. I'm the half full glass person versus the half empty glass person, all right, and it may only be a small amount of difference between the two, but I think it means a heck of a lot to how you go through each and every day.
Speaker 1:Well said, my friend, Well said. So the last thing I want to talk about is last weekend I got to go give Ray a hug in person, him and his wife You're a great hugger, by the way. He's like, sorry, I'm a hugger. I'm like, oh, our family's a hugger too. So I went right in and I just wanted to share something that both of us were a little perplexed about. But now that you've told the Rocksteady boxing story what happens there, I think what I'm about to say it explains why this happened. So Ray has a ping pong table in the basement and he was telling me about things and he wanted to show me where he sits for Zoom, because he's got a really cool Abbey Road backdrop like the Beatles, Right, yeah, the Beatles walking across the Abbey Road, Is that?
Speaker 3:Abbey Road Abbey Road backdrop. Like the Beatles, right, yeah, beatles walking across the Abbey Road.
Speaker 1:Yeah, except he has animals on him, but that's another story, right?
Speaker 3:You didn't expect anything normal, did you? No, no.
Speaker 1:So I can tell you a little bit about the nail polish inside joke, because I sat down at the desk where he sits at and I was like why do you have nail polish at your desk? So that's so.
Speaker 3:It just became a joke well, that's because my wife shares the same workstation oh, is that the story you're telling, okay?
Speaker 1:that's what I'm using this week but anyway, he was telling me you he had mentioned he plays ping pong. And what did I say to you? What did I say to you First?
Speaker 3:thing out of her mouth is I'll play you and I'm going to make you cry like a baby.
Speaker 1:I think it was. I thought it was scream like a girl. Was that what it was? It was something.
Speaker 3:My Louis body. I forgot it already, but needless to say, for the next many hours that we played, she persistently tried to accomplish that fact.
Speaker 1:And I was a girl between two older boys and brothers and two younger brothers, so I learned how to play ping pong.
Speaker 3:We had a great time.
Speaker 1:We really did have a great time, and what we realized is when both of us stopped talking and we tried to play. We played terribly and the more we talked while we were playing, we were very.
Speaker 3:We had long rallies and we were like what is going on? I didn't notice it at first, but when it broke up and you know, my wife was sitting on the side she doesn't play pong, so she was just talking to us. So we'd have like a three-way talk and as long as we were talking we were doing fine. As soon as we stopped talking and concentrated on the game, our quality of play went down.
Speaker 1:Yeah, yeah, it was very interesting. But now that you told the Rocksteady Boxing you know that's probably helping your mind with all that. It was just very strange. It was very noticeable to me that when we both stopped talking for a minute we were like what the heck?
Speaker 3:Well, the next time we play we'll become like one of those lab rat experiments.
Speaker 1:You know, we'll get somebody to take notes and analyze it and in Ray's defense he only screamed like a girl, like three times. I'm just saying.
Speaker 3:I was trying to think of a way to describe the way you play, and the best word I could come up with was tenacious. How's that? Is that a good word?
Speaker 1:It was called survival growing up, yeah, you know, between all the brothers it was called survival.
Speaker 3:growing up, you know, between all the brothers She'll play nice until you feel comfortable and then she'll slam you and say, gotcha. Or I'd be like, oh, sorry, yeah right, she'll slam it and then she'll give you that humble bit like oh, I really didn't mean to do it that hard.
Speaker 1:Meanwhile, in the back of her mind, she's saying next time harder, next time harder. And not only that.
Speaker 3:I mean, we did more than just play ping pong. We took some silly pictures together and we had hours in between of conversations, the three of us, about everything under the sun. I think it's great. I mean, I don't know about from Linda's standpoint, but we just immediately opened up to each other and any topic that popped into our minds was fair game.
Speaker 1:Yeah, it was a pretty amazing day. I'll be back, so keep practicing, I'm telling you.
Speaker 3:Well, the problem is I got nobody to practice with, so when we meet it's a combination of practice and competition, okay.
Speaker 1:All right, it's a promise, I'll be back. Okay, promise or a warning, I don't know which. Yes, all right, kerry, you want to ask them this last question. Yeah, ray, do you have any final words? You'd to ask him this last question.
Speaker 2:Yeah, Ray. Do you have any final words you'd like to share with our listeners?
Speaker 3:Try to stay positive. If you don't, you're your own worst enemy. I mean, let's be honest in life no one's going to look out more for you than yourself. I mean, as much as we love our loved ones and stuff, they have their own lives to live and they have their own issues that they're going to encounter, etc. So you know it used to be an old proverb I don't know if it's true or not, but you know god helps those that help themselves. So you know, if you do nothing, don't expect anything to change. If you try something and you don't like it, you can always stop it. You try something and you like it, you can always continue it. And again, if you want to be part of the pity party and sit around and just mope and cry and feel sorry for yourself, you're welcome to. But I chose a different path. Yeah, and now?
Speaker 1:we're stuck.
Speaker 3:I like laughter, I like silliness. Uh, if you're ever around our house and linda has been my wife and I constantly have stupid banter, you know like she'll say a word and I'll say it back, but it's a totally different word with. You know it's a synonym type word but it's totally, totally different word. It's a synonym type word but it's totally different meaning and so on and so forth, and I think that helps both her and I get through the issue. Don't be afraid to talk about your condition when I go out. If I'm having difficulty going through a doorway, I just say oh, excuse me, I'm a little slow, I have Parkinson's. I don't even hide it, I just tell people slam it, because if you tell them, there's a chance they could be understanding and compassionate. If you don't tell them, they just think you're a stumbling old geezer. There's two sides, but you've got to get over the fact that you have it. There's no stigma associated with it.
Speaker 1:Yeah, we've come a long way in society about all those kind of things, which I'm thankful for. And before Curry starts signing off thank you again, Ray, for coming on, and I will be back.
Speaker 3:Oh, I do want to make one more statement, if I could, to all those listening. Linda and Curry have all my personal information as far as phone number and Facebook. I do a lot of messaging on Facebook. If there's something you want to know more about or you just want to contact me in general, please contact either of them and I've given them, you know, complete permission to give it. Um, and also I want to mention something, uh, before I was diagnosed and again I just thought I was getting old and slower I used to do a lot of tv and maybe some puzzles for the brain.
Speaker 3:Obviously, tv is not very exercising and puzzles, as fun as they are, they're kind of monotonous after you've done 12 in a row and there's 750 to 1,000 pieces. So recently my wife has gotten me on Facebook. I've never been on Facebook in my whole life. When I say recently, maybe nine months ago well, I have also have a facebook group, of which a lot of people, including those from our zoom group I know curry belongs to it, a few others in the group, uh, that belong to it. Well, I also use Facebook not only for the enjoyment of putting things out there that I think other people might enjoy reading about, because all the content is generated via me. Either I borrow it from somebody else or the original.
Speaker 3:But when I find people that respond to something I post, in many cases I contact them and in a few cases I've actually developed what I'll call maybe we used to have long-distance pen pals. People used to write. Well, I'll call them long-distance friendships. I have a gentleman in Spain that I've never met, but we send the equivalent of Christmas cards to each other. You know what I'm saying.
Speaker 3:I have two people in England One's an artist and one's the mother of a son who's a musician People in Australia. So my wife kind of marvels at me because most people, I guess, just look at Facebook and click on it and send something back, but it's like you're sending it into dead space. You never get any feedback. But I will go out of my way in many cases to respond to anybody who participates and those who want to engage further. I've met a lot of great people. So again, that helps in the positiveness, meaning you're not just killing time. Instead of doing TV or doing Facebook, I'm actually trying to interact and learn and be part of these people's lives as well as they want to be part of mine. Yeah, that's great.
Speaker 2:You know, ray when I look at you, uh, they always say that the sooner you're diagnosed after your symptoms start, the better your journey will be. Yep, and I think you're. I think you're living that right now.
Speaker 3:I really do well, when I wake up in the morning and this is the absolute truth there's two things I say to myself mentally. I don't say it outside verbally, but mentally. First thing I say is thank you, god, for another beautiful day, because I'm here, right and so. And then after I get up and I'm standing, I say well, I'm still vertical today and that's the way I start my day. So if I got two things going for me right off the bat, the rest of the day is going to be easy, yeah.
Speaker 2:That's right, that's good. Well, folks, that's all we have time for this week. Ray, I want to thank you again for coming on and sharing your experiences and giving words of encouragement to our listeners. We want all of you to be a part of our podcast series and share your thoughts on topics you want to hear about.
Speaker 1:we'd love to hear your feedback on these things yep, and thanks again, ray uh for coming on um.
Speaker 1:And my pleasure I had a lot of fun. Yeah, and we'll be back. Yeah, we'll practice our ping pong together and, as always, if you want to send suggestions or comments to either our email at louis body rollercoaster, at gmailcom or on one of our facebook pages or through messenger, you know you can always send messages that way and we really can't thank you all enough for supporting us to keeping this podcast going as we continue to share and learn from one another and meet some pretty amazing people.
Speaker 2:And folks. As always, we will continue to post the link for the podcast each week for you in my Facebook group, Our Journey with Lewy Body Dimension, and then our Lewy Body Roller Coaster podcast group, as well as many other groups, so thanks for joining us.
Speaker 1:Until next week.
Speaker 2:This is Linda and Curry signing off.