Episode 14: Recovering Positive Self-Esteem [Janna] Hello friends, this is Jana, an Alzheimer's Thriver. [Larry] And this is her husband, Larry. I'm also an Alzheimer's Thriver. [Janna] Well, you're a wannabe. [Larry] And we're going to hear today from... [Janna] The horse's mouth! This epiphany is very fresh. I just realized, one and a half days ago, that I am suffering with low self-esteem. I have low self-esteem. That's how I gaze at myself, and I think, well, why? Well, because guess what, I've lost my ability to read, I can't drive, I can't see things in the dark dust very well, it's hard for me to orient myself, and it just seems like those are downer, downer, downer things, and I think, well, what can I do about it? So, I am saying to myself, hmm, why am I doing that? Why am I feeling this way? And I realize it's because I am comparing myself to other people, and what other people's lives are like, and why my life is different. Of course, I feel not smart because I don't read, but could I change anything about it? Does that make me not a smart person? Because I feel stupid a lot of times, and I go, wait a minute, I'm going to start deciding I'm an intelligent person, and I'm maybe even super intelligent, because I've had to figure out how to solve problems and make things work, when I can't even read about them. All I can do is listen, listen, that's a good thing to do, somebody who can actually listen, and I'm getting better and better at it. So I decided, I'm going to feel good about this, and like I'm a specialist about listening and figuring things out. [Larry] Does that help your self-esteem? [Janna] Oh, yeah. For instance, we went to play tennis, and we went to warm up, and a couple of times you said, no, not that, no, not that, and I said, and I just walked away, I just walked away, went down the hill. [Larry] You didn't barb it? [Janna] No, I didn't barb it, I just got into a little tiny area and thought I'll just hit against this little backboard part, just me against the backboard, just me against the backboard. And Larry's back there like, what's she doing, how can we warm up like that? And I didn't say anything to him, I just thought, this is me saying, I don't want to be told what to do, I don't want to be coached, I know when I'm making mistakes, and please let me self-direct, self-recover. So, I've shifted my outlook too, because I was feeling unintelligent and low self-esteem, I said, do I want to buy that? I'm going to go, yeah, that's me, I'm low self-esteem, I'm going to scheme that thing. And I went, no, I'm going to smile, I've already got that part down, you know, you wake up, you smile, I feel better, that's great. But I wake up, I smile, and I go, yeah, and I have self-esteem, not bad self-esteem, I have good self-esteem, and I'm going to look after that and pat myself on the back when I feel good, and if I feel like I'm ailing, well, are you going to accept that, Janna, are you going to say, well, then you're a loser, because you're ailing, or are you going to say, okay, well, let's try it again? So to that end, I thought, got to be thinking about what kind of things that we've done in our past have I been, have I been really successful with? So I drug some of them up, and I was playing the flute and that kind of thing, and then it went, wait a minute, I did this thing about, I think we should build a house, and I think I could do the plans, and it was kind of outrageous to think that I could do it, but I did, but I think nothing of it today, because that was in the past. And now I'm saying to myself, hold on to that as one of your attributes, think positive things about it, but I can't remember how you put the house together and what some of those terms are. So I say, Larry, I would like to go figure out some way that we could pull up on Google or whatever it is, YouTube, and say how a house is built, because like, oh, we did that, I planned it, we did it, it's there, but I don't remember the parts. Honey, what can we do about that? I want to have a look at that. What did you do? How did you help me out on that? [Larry] We went on YouTube, and we looked up how, well, first we said, from house plans to building a house. I just did a search, and there was a number of examples of how you start with the grading and how you start with the laying of the mud sill on the stem wall, and then build up the framing on that. [Janna] How did you make this possible to get right in the middle of it and see it and hear it and understand it and pull it back into my memory? [Larry] Yeah, so the vocabulary, what was nice about it was they were saying things like, okay, this is a mud sill. [Janna] And who gave us this information? [Larry] Who gave us what? [Janna] Where did we get that information? [Larry] From YouTube. YouTube. Yeah. And these are cripple studs to go below the window, and these are king studs to go beside the window, and they were just trusses and vocabulary headers and all the vocabulary that you used to use all the time. I doubt whether you probably used it in 30 years, 30 or 35 years. [Janna] And the vision of it and the picture of it and the feeling of working in that setting came to life again, like reborn. [Larry] So that made you feel good about yourself, right? [Janna] So much that I cried. [Larry] Yeah. I love it when you cry. It makes me feel like something special is happening. [Janna] And that made me feel like, okay, I've been feeling I don't have much self-esteem. Now I went to play tennis with Larry today, and I went, I'm going to say I have good self-esteem. I'm going to feel good about myself. [Larry] Yeah. So you started playing better. [Janna] Yeah. [Larry] And we mixed it up a little bit, and we were playing with our doubles team partners, and it worked out really well. So and then you felt, I mean, because you were missing the balls for a while, and that probably lowered your self-esteem. [Janna] But I got away, and I said, well, okay, I'm not doing very well compared to Larry, so let me get together and do how I do against Jana, and just not worry about other people. [Larry] So what you're saying is that you've made some kind of a shift here in your thinking, and it's been a day and a half. [Janna] A decision. [Larry] I also wanted to, if it's okay, we can talk about this, it's related. There are good days and bad days, or you could say, instead of good and bad, you could say that there's just days where you're feeling really upbeat and like on top of things, and there's days where you're just kind of down. Would you be able to use this technique on those down days at all, or, I mean, for heaven forbid, I'd be the one to remind you. [Janna] Well, yeah. [Larry] Hey, you're not supposed to feel that way. Remember, you have high self-esteem. [Janna] Well, to tell you the truth, even this morning when we were just playing some matches with the guys, you know, and I thought, hey, I'm playing tennis, and guess what? They don't even know, but I've planned a house and done all the particulars of getting a house be built, and that had nothing to do with tennis, but it made me feel like I have some self-esteem. I have some skills. It doesn't matter if maybe I can't grab them right now. [Larry] Yeah, you have that in your memory. You also built a house on the San Juan Islands. [Janna] Oh, heavenly, but isolated, very isolated. [Larry] We did sell that house. So I've lost a lot of things, and I could feel bad about that, too, and I don't have Alzheimer's, but I would agree with you that there just comes a time where, okay, I don't do those things, but I know about them, and I know I did it, you know, so I'm still that same person. [Janna] And you can remember that, but I have to be reminded of those things, and thank heavens for modern technology. I can call back the past. [Larry] Yeah. Yeah, it's a pretty good resource, YouTube, and actually you've got your first podcast up on YouTube, speaking of that, and it's the one that is kind of a trailer for upcoming podcasts. It seems like we're doing mostly, though, podcasts on the podcast platform and not on YouTube yet, but we're going to be doing more videos, so you get a chance to do it from YouTube. It's a pretty good platform, I think. [Janna] Yeah, it is. [Larry] Yeah, and it gets an algorithm going for what you like to find and search for. [Janna] And maybe we could get to the place where we almost stop using the word no, no, because you ask this question, well, could you do this or that? No. Well, for somebody who's low esteem, no feels like a slap in the face, and it's not a slap in the face, but it's just, it makes me feel like I don't want to try anymore. [Larry] All right, let's see if I can think of something. How about, that's an interesting viewpoint. Have you thought of da-da-da-da-da as an alternative to no? Would that be, or would that sound patronizing, if I said you have an interesting viewpoint there? What have you thought about da-da-da-da-da, and then I'll come up with my viewpoint. [Janna] Well, actually, I'm just kind of preaching here to everybody and saying most people don't like to be told no. [Larry] No, yeah. [Janna] And so if you, before you say no or say something negative, if you think, is this person going to like this, what they're hearing, or should I soften it, and you say, if that's the case, you want to get the point across, but you don't want to be harsh, just, hmm, that's an interesting thought. I wonder, you know, and then go. [Larry] Do you think it's possible to get beyond caring about, so much about, in other words, somebody would say something to you, they'd say no, or they'd say something derogatory or negative, and you would get, you would be at a point where that would not lower your self-esteem? Is that possible, do you think, or it's kind of early on, but? [Janna] Maybe, but it's quite a battle for me, and I'm guessing it's probably quite a battle for a lot of people that have Alzheimer's. It's hard to feel you have self-esteem, because you're so aware of what you were used to being able to do, and the words just don't come right up there, and keep it positive, keep it positive. [Larry] Well, I noticed yesterday, we were having one of our granddaughters that graduated from fifth grade, and we were at the kind of celebration lunch afterwards with the family, and everybody was talking, and then you began to talk, and so I thought, I'm going to look directly at Jana and give her my full attention as a prompt for other people, because, I don't know, it just made it so it wasn't just, oh, she's talking now, so that's, we don't have to listen. Not that that was happening, or that that would happen, but I just thought it would give more attention to you if I looked directly at you, because usually I'm not looking at you, I'm just listening when you talk, and I think, yeah, everybody started to get quiet, and they were listening, and, you know. [Janna] Respectfully, kind of. [Larry] Yeah, and I thought that was great, that took some nerve on your part, because there was kind of, there was ten of us there, so. [Janna] And that took some self. [Larry] Esteem. [Janna] No, yeah, but some, some holding back, or what would I say, some, for you, you didn't jump right at something. You have some air there for somebody to say something. [Larry] Yeah, I was happy that that was happening, because I thought, well, nobody wants to just sit there and listen. That's true. But if you have low self-esteem, and you also feel like you're not quick enough to say anything, we've talked about that before, but I think it's, it's just a reality, you know, that people have to face, and. [Janna] What my sweet little granddaughter said, I'm not even going to say her name, but I was going to go to the restroom, and she thought she'd help me. You'd think, you'd think I couldn't even walk to see how, she doubted on, doubted on me? [Larry] Dotaled. Dotaled on me, yeah. [Janna] I said, now, now, just open it here, and then just, and I'll be right, I'll be right here when you come out, and if you need. It was so cute, and I could have felt like, oh, you're making me feel like an idiot, but I didn't. I thought, she is a caring person. She's empathetic. I would interpret that as she loves you. She needs to be empathetic, right? She loves, I mean, it says I love you very strongly. Made me smile for me to hear. [Larry] And so, but then after that, I mean, it seemed like, you know, we went kind of down a little bit. All the excitement was over, and we came home, and we tend to watch TV at night, and it's getting harder and harder to find anything that, you know, is decent for both of us, so we just sat there and turned TV off, and we talked for a while, and I don't remember what we talked about, do you? You're asking me? [Janna] I see. Well, we talked about that yesterday, we were going to, because I had this crazy idea that after, I don't like long times in the dark, and just like story after story on the TV, and I'm like, oh, I'm getting tired of this, but it's the days, the evening is so long without listening to the TV, so I said, well, how about when we're partway through when the TV would have gone, we get on our shoes, our tennis shoes, and have, you know, flashlights, each of us have a flashlight, and we take a walk, and I won't go alone, you know, he'll go with me, and it'll be dark, and there's a different finesse, a different feel about the nighttime, but of course we didn't do it. I was ready, but he was not. [Larry] Let's do it tonight. Okay, we'll do it. It's a deal. All right, so I guess that's pretty good, we covered self-esteem, and I hope that you guys out there will take that to heart, and maybe not feel so bad sometimes about that feeling that you get, and just put yourself out, what would you say at the end, how would you conclude this, Jan? [Janna] I would say if you have a skill that you had had in earlier years, like I have, that you, you know, you really felt good about it, I would say, okay, how can you pull that up in your memory, so it doesn't have to be your memory, like my memory of planning a house building, and doing the, what are they called, the prediction, yeah, all the plans for it, but it didn't have to be my plan, it could be anybody's house plan, something general, we put it up on the stage, and it's, you know, people are talking about it as it's being done, and it brings together the memory of that again, even though it's a different house, somebody else's house, and I think, well, what about when we went to da-da-da-da-da, let's relive it somehow by pulling it up on the screen. [Larry] Yeah, and if you guys haven't listened to How It Was Made, that's kind of a series on YouTube, and it's pretty good, I mean, it has all kinds of stuff that will increase your vocabulary, and if you can practice echoing, like we talked about before, where you say in your head, right at the same time someone's talking, what they're saying, move your lips, and, you know, that would be practicing echoing, and you'd be hearing vocabulary, and those kind of things will help your brain. [Janna] I promise you, if you do that with your lips, and you're just echoing, the thought will come to your head, at least for an Alzheimer's person, the thought will come to your head faster than if you haven't had your lips kind of wiggling a little bit. [Larry] Yeah, if they weren't doing that. [Janna] Yeah, put you on the edge, put you on, let's go. [Larry] All right, well, I guess this is the end of this episode, so anything you want to say? [Janna] I'm an Alzheimer's thriver, and I've turned my chin up, and I've decided to be not low esteem, I'm just not high esteem, but I have esteem, I'm okay, I don't have to be apologetic, uh-uh, it's a different era. [Larry] All right, that's great, Jan, you did most of the talking this time. [Janna] Yeah, well, they were talking to you. [Larry] Yeah, I don't like to, I want to hear from the horse's mouth, that's what I want to hear. [Janna] I want to kick you. [Larry] What's it like being an Alzheimer's person, and striving, and thriving, and what's it like, and that's what you're doing in these episodes, I just love it, and so thank you. Let me be a part of it, and yeah. [Janna] I encourage you to pull up something from the past that you used to know how to do, and put it on the YouTube, or whatever you do, and see, oh yeah, that's how that's done, oh yeah, that's how that's done. [Larry] That'd be fun. All right, guys, until next time, this is Larry, her husband, signing off, and Jana, who is the Alzheimer's thriver. Thank you. Bye. Bye. Study 1 Title: “Association of Lower Spiritual Well-Being, Social Support, Self-Esteem, Subjective Well-Being, Optimism and Hope Scores With Mild Cognitive Impairment and Mild Dementia” Authors: Sabrina B. dos Santos, Gabrielli P. Rocha, Liana L. Fernandez, Analuiza C. de Padua, Caroline T. Reppold Frontiers What they did: Compared healthy older adults vs. those with mild cognitive impairment (MCI), mild dementia, and moderate dementia on a number of positive‐psychology constructs: spiritual well-being, social support, self-esteem, life satisfaction, optimism, hope, etc. Frontiers Key findings related to self-esteem: · People with MCI and mild dementia had lower self esteem compared to healthy controls. Frontiers · Self-esteem was positively correlated with quality of life, life satisfaction, positive affect, optimism, social support. Frontiers · The drop in self-esteem appears in early stages; it is part of a constellation of reductions in positive psychological wellbeing. Frontiers Why it supports “benefits” of self-esteem: The study suggests that higher self-esteem is associated with better psychological outcomes (life satisfaction, optimism, well being) among those with cognitive impairment. Also implies that preserving or bolstering self-esteem might help attenuate negative psychological effects of dementia. Study 2 Title: “I Will Be Healthy: Ideal Self in Patients with Alzheimer’s Disease” Authors: M. El Haj et al., 2022 PMC What they did: Investigated how Alzheimer’s patients endorse positive health traits and integrate these into their ideal self. In other words: how people with AD still think about who they want to be (their ideal self), which is tied to self-esteem / self-image. PMC Key findings related to self-esteem: · Alzheimer’s patients tend to endorse positive health traits (e.g. “being healthy”, “being able to do things”) as part of their ideal self, even after diagnosis. PMC · Maintaining this “ideal self” seems related to preserving self-esteem: having a positive self-image helps with psychological wellbeing. PMC Why it supports “benefits”: It suggests that Alzheimer’s patients maintain a capacity for positive self-evaluation, which is linked with preserved self-esteem, and that this ideal self helps in coping, mental outlook, possibly reducing distress associated with decline. Study 3 Title: “Sense of Self among Persons with Advanced Dementia” (in Personhood and Dementia / NCBI ) Authors: A. Norberg et al., 2019 NCBI What they did: Qualitative review and synthesis about how sense of self (including self-worth, dignity, being valued) is affected in advanced dementia, and what factors help preserve or restore parts of self, dignity, and self esteem. NCBI Key findings related to self-esteem: · Even in advanced dementia, aspects of self (Self 2: how people perceive their physical/mental attributes and Self 3: how they present themselves socially) can be preserved. NCBI · Supporting dignity, at-homeness, being oneself, respectful interaction from caregivers/family can maintain feelings of self-worth. NCBI · Negative stereotyping or demeaning interactions can reduce self-esteem and sense of self; positive interactions help improve emotional wellbeing. NCBI Why it supports “benefits”: It provides evidence that preserving self-esteem/self-worth—even in later stages—can contribute to emotional well-being, reduce distress, improve quality of personhood, reduce suffering.
Episode 13: Part 2 - Navigating the Gains and Losses Janna: Hi friends, this is Janna, an Alzheimer's Thriver. Larry: And this is her husband, Larry. Janna: Welcoming you to Part 2, Navigating the Gains and Losses. Larry: In Part 1, we talked about the gains and losses in this trajectory that we're on. Janna: And in this episode, we'd like to continue along that vein. Larry: You know, some of the physical things we talked about last time were having low vision, having low smell, and a loss of taste. We talked about short-term memory and long-term memory, and how your reading is not able to help you. And then we talked about some of the character gains, like empathy, kindness, having an easy laugh, and how you've developed your oral abilities. So, what are we going to explore this time? Janna: Some of these losses happen because of what's happening in your brain, and yet, I think probably many of them are self-imposed, unwittingly, allowing somebody to do something for me, which I should be doing for myself. Larry: But like, when I'm helping you, it's so much easier for me to do certain things that are becoming more difficult for you. I mean, you could probably do them, but they're becoming more difficult. So, I see, well, I could just do that, for instance, like putting your clothes on a hanger, right? Janna: But like this morning, you didn't help me put things in the closet. I discovered that I was having a really hard time. I could lift it up and think, okay, I'm going to put it on this hook, but why that hook? Should it be going right or left, and is it color-coded? How do I organize this, and how do I keep track of it? Larry: So that's what you mean by unwittingly, you've kind of lost that skill by having me do it for you for so many times, right? Janna: Right, and I feel silly about it, but I think, well, it's kind of like using the bathroom. You get in that groove, you know how to do it, you don't have to think about it a lot, but now I'm coming to something that I haven't been doing for a while, putting things in the closet, and I start to move, and I go, what am I supposed to do? I don't have the memory. Larry: Yeah, so it used to be something you just put your clothes on a hanger and throw it in the closet. You know, I have to say, I contributed to that acceleration of the trajectory going quicker against you, because you became dependent, and I think for the last, I think, two or three months, or maybe more... Janna: And that was destructive. And we didn't know it. We both thought we were helping each other. Larry: Yeah, I'd see your clothes piled up on the dresser, and I would go, oh, well, while she's in there putting her jammies on, I'm going to hang up all these clothes for her. Do you even remember hanging up your clothes for the last, like, several months, probably six months? Janna: No, not really, because I think you've been kind enough to, like, put them out, and here, let me do this for you. And so, I went to do this for myself, and I went, what is that skill, I don't remember how you put them ...and which way do I push it, and all that jazz. Larry: We should say that, you know, for some of you out there, this is not a problem yet. And some of the things that we've lost in this is not a problem for you yet. And I say yet, because these issues are very common between all of us that are dealing with this disease. So, just put it in your, you know, your cache of things to remember and try to think about, especially if your care partner's listening, and you can expect that some of these things might happen to you. And if they do, whether or not it's putting your clothes away, it might be something else. Janna: Yeah, I want to think that you should think in terms of encouraging one, but not teaching them how to do something. Our second episode, or third episode, I think, was on when help is not help. And I think this... we didn't talk about this, because it wasn't happening then - this particular thing. But now we've noticed it. Janna: And I've seen people in help positions, where they're helping, quote unquote, the person who needs help. But then what really happens is that they learn to be dependent more and more and more. Larry: So, I noticed this morning when you were cleaning the plates, so I made breakfast, and I asked you to clean the plates. And you did that, and you let a few cuss words come out along the way. Janna: Who me? Larry: And then I thought to myself ...oh my gosh, I should be doing this. That's when I asked you, I said, “...how do you process this?” Because it's something that should be pretty easy to do, and you are cussing, but how are you processing, you know? Janna: I'm saying to myself, I'm regaining something that was just, I did, without even thinking twice, you know.And now I'm having to think through it, think which way to turn things. Larry: Yeah, and so what if it goes in the dishwasher, and what goes up on top goes on the bottom, or vice versa, or in a different direction, or something I'm not used to. I mean, I'm not that obsessive compulsive. Janna: But for a while, but for a while, you were taking charge of everything, don't you think? Larry: Yeah, I would rearrange it, just like when you made the bed, if it was Sacky Sywakis, I would rearrange it, and it's like, no, there's really no reason. Janna: That says to me, “...no, that's not good enough, just give up on it.” Larry: So, we are all about slowing the trajectory. We've talked about diet and exercise and inflammation. And we've talked about, you know, the skills and epiphanies that you've had in regard to slowing that trajectory. So, it's all about slowing the trajectory. We unwittingly may have been speeding up the trajectory by taking away... Janna: Helping. Here, let me help you. Larry: Things that you should be able to do yourself. Now, we folded the laundry a couple of laundries ago.And that was tough for you to disseminate what is what and how to... Janna: Whose is whose. Yeah. And what color it is. And I've been doing the laundry for a good two years now. Janna: Because it made it easier. Larry: We're in our 11th year, really, of Alzheimer's. And so, but for the last two years, I think I've been doing the laundry and... And then someone in our support group said, Hey, come on, why don't you let them do something? And I'm like, I don't know, it's just easy for me to do something. Janna: So, have other people in your group said that they tend to just take charge? To help. Larry: Yeah. Because It's quicker. It's faster. It's more like what we're used to - getting it done in that amount of time. And I think that is the unwitting part of speeding up the trajectory of the things that we're losing. Janna: I like to liken it as to a child that's trying to learn something. We're ever so patient with them, and we don't expect much of them. But when it's us, we think we've got to get it right now. And if we don't get it perfectly, then we're a failure. Larry: Yeah. And I noticed the two that you had resolved yourself to me helping. So, there's some responsibility on your part, too, right? Janna: Yes, yes, yes, yes. You know, when somebody's willing to work really hard and just treat you like a princess, it's hard to say no. Larry: Yeah, yeah. But for a while there, you would say, No, I want to do that. Don't be doing that for me all the time. And then that became less and less, and it became more like, Okay. Janna: Oh, I better watch out. I'll be cleaning the toilets for you soon. Larry: Hey, that's a good idea. I didn't say that did I? I hate that job. Yeah, so it falls to both of us, but probably more to me as to when to jump in and when not to. Well, okay, so some of the losses are just because physically we are losing parts of the brain that are functioning in those areas. And we give in to it, too. Janna: I can give in to it. Oh, gosh, I'm losing this. I'm losing this skill. Oh, I'll just let it go. I don't need it. No, I don't think so. Larry: What do you tell yourself when you're having to do something, and it's so difficult, and it's just like, I can't keep doing this. This is just too hard. How do you push yourself? Janna: Actually, a lot of times I'll stomp my foot, and I'm kind of angry about it. And then I go, okay, all right, Jesus, I know you want the best for me. You're always there. Show me the next step to take. I let go of it. I'm looking to you. Larry: Before you had Alzheimer's, when we were running a business, a music school, you and I both would pray about things that take this away, take that away, make this go away. But we've never been promised that there's going to be a lack of trouble. And we even knew that before we had Alzheimer's. We lived the life where we expected that there was going to be conflict, there was going to be trouble. In this world, you will have trouble forever. Janna: And the sooner you get your brain around that, the sooner you can have some peace about it. Okay, here it is. Now what do we do? Larry: As it applies to Alzheimer's, it's the same thing. It's like it's a new thing every day or every week. And we have to realize these things are coming. It's kind of a preemptive attitude. It's a preemptive, |oh, here's another thing, so we'll just do this” and work it around. And that's that indomitable spirit that you've had and your dependence on God and your gratitude for the little things. And I see that that's a quality that's growing in you. And it's inspiring to me, too. Janna: We just have to adapt. And I was thinking, you just have to make it work where it can. Like, I really like to do long walks, exercise, exercise, exercise. But guess what? I come home and I'm lost, or nearly lost. So, what have I gone to? I've gone to, okay, there's this two-block radius. And maybe I can just loop around that again and again. And I think, oh, how embarrassing. People see me going in circles. Who cares? Who cares? I'm getting the exercise and I'm not getting lost. Be real. Larry: So, I think since you and I have had, and I think most of the care partners would be in this situation, you and I have had many conversations about many things. And I've been able to take note of what we're able to talk about and how much is too much information and this and that and the other thing. I noticed that your flow of consciousness has improved in your speaking lately. So, you know, that's an improved gain. I would say that's on the gain side. And that's a physical thing because it's your brain responding to your will. And being able to say the things you want to say in a coherent way. Janna: And it's so easy to ignore the practicing of that. But when I find myself just walking and nothing else is going on, I'm just looking out there. I go, okay, name the colors I'm seeing. Name something here and name something there. Or just make up a song about it. Be active. Engage my brain. Larry: Yeah, so we just have to be careful of the things that I take over. And I just need to stop every once in a while, and just say, is this something that she should be doing? Because we are still partners. And partners do things on both ends. So, we don't expect the other person to do everything for us. Larry: Big stretch for you, isn't it? Yeah, because I'm like a bull in a china closet. I just go in and get it done.And you know, that's part of my angst. I have an anxious kind of personality when I start a project. I want to finish it. So, this is a gain on my side. Being able to step back, take a little more time with something. Janna: You wind up being a counselor. Larry: Who knows what I'm being prepared for. But yeah, this has been a great, I think, podcast for both of us to maybe just be transparent like we've been and let people know that it's always going to be something. We're not really talking about cures. And we're not talking about it stopping completely. But the trajectory is the main thing. We do want to have a better quality of life out of this. And I want a better quality of life. I don't want to be someone who's just serving a need all the time. I like it when you rub my shoulders and when you take the dishes and go do them. And when you help fold the laundry and all that. Because then we're in it together. It's something we're doing together. That's why I like playing tennis with you. Janna: You like playing tennis with me because you win. Larry: Even though I could crush you. Janna: What? Say what? Even though it could be... But you have to have one hand behind your back. Larry: A thousand points to zero. I win. It's morphed. Our doubles play is morphed. Maybe some of you guys play pickleball or maybe you're beyond that. It's morphed into something where I just love that we're doing something together. It doesn't have to be who wins and who loses. Janna: Oh sure, it doesn't matter. Larry: Now if we were playing basketball together I might not like that. Janna: I like a thing where we're playing tennis and there I am and I'm going for where I think I'm supposed to be. But you jump behind me and dart behind me in case I miss my spot. And you do get it. It used to drive me nuts and now I'm like, okay, he's just going to do that. And he's so quick that he's not going to trip me. I just have to look past this. Larry: If Jana misses the ball and I'm behind her and I get it, that's a win for both of us. But if I distract her and she hits the ball but because I'm distracting her... Janna: Because I hold back. Is he going to jump right into this? Larry: That's when help is not help. It's a give and take. They say in tennis it's double trouble when you're playing doubles with your wife or husband. Janna: And we haven't had a divorce yet. It's amazing. The fact that two people can work together in tennis... Janna: Because I'm so patient. Larry: Maybe that prepared us for working together through Alzheimer's. I don't know. Let's start a club. Let's just tell people where this started. We had counseling when Janna had quadruplets. And the counselor said to us... Because we were running a music school in San Diego, Wagner School of Music. And the counselor said, you can either run a business together... Janna: Or have a marriage. Larry: Yes. And it was just like, one of you is going to have to be married and do something else. And one of you is going to be married and run the music school. So, we both agreed that I would run the music school. And she went and got her degrees and teaching certificate when the boys got old enough. But that's changed. Now we can have both. Because we are working together in life. Janna: I can't say I'm teaching much anymore. Because I used to teach up to high levels in math. And that's what can help me. Larry: As a matter of fact, you don't even like to talk about math when I say... Okay, the $17 is going to be subtracted from what we did. And you're like, stop it. Janna: It's because I feel nervous. Because I used to be able to do this in a heartbeat. On the other hand, if I walk it out completely, I'll lose it all together. So, I'm thinking about doing some exercises. Larry: Yeah, so here's someone who passed the praxis exam for math over at San Diego State. And that is not an easy exam. It's all about math and proofs and things like that. And now that's just something that is one of the losses. It's gone. We still have all your books. Janna: I've just rerouted it. Let's think of it that way. Rerouted it. Learned graciousness. Larry: You've rerouted to character development or something. Janna: Oh yeah. Larry: Patience. Janna: Take those tears out and make it... Larry: What's more important? Reducing the square root of a number that... Janna: Now don't get above the nail here. Larry:]Or having enough patience to enjoy life even in the midst of trouble and chaos. Two separate things. Janna: I get the prize on that one. Larry: Yeah, you get the prize. And I want that prize too because I want to be able to do that. I want to be able to be patient enough. Janna: You have to learn not to cry. Larry: Yeah. Can you do that? I don't cry. Well, I'll shed a tear in an emotional moment in a movie or something but that's usually it. I'll usually have a few choice words if I get hurt and I won't be crying. But anyway, we digress. Janna: No, I don't. You do. I'm a digresser. Janna: Pretty much. Larry: Alright, so we're going to close off this episode. There will be your gains and losses out there, folks. And we are rooting for you, right? Yeah, we're rooting for you to be thrivers. And to go ahead and let the... If you have to cuss, go ahead and cuss. If you have to go into a closet and scream your head off, go ahead. But... Janna: Turn up your... Larry: Don't quit. Don't give up. Janna: Turn up your... What's this called? Larry: Your smile muscles? Janna: Your smile muscles. Turn those up. And just keep smiling and smiling and see if you'll be grumpy. I think you'll get past it pretty quick. I always do. Larry: Yeah. Alright, guys. We're signing off. And until next time... Janna: I'm Janna. Larry: And I'm Larry. Janna: And we are... Together: Alzheimer's ThriversTM So, until next time, you're hearing from... Janna: The horse's mouth. And the horse’s... Wait! Janna: And what does that have for you? Larry: That doesn't leave much for me. There's only one other end. Okay, so... Bye everyone. Janna: Bye. Larry: We'll see you next time. Janna: Blessings. Link to a study related to This Podcast The development of the Promoting Independence in Dementia (PRIDE). Intervention to enhance independence in dementia. PMC
A Passion for Pathways [Janna Starts off with playing Flute] Janna: This is Janna, an Alzheimer's driver, along with my husband Larry. Hi everyone. Janna: I have discovered that I have a passion for pathways, neural pathways that is. Today you'll be hearing from the horse's mouth. [More Flute] Larry: Well, here we are again sitting in the office looking out our window and it is drizzling out here in sunny San Diego. Janna: Yeah, but I really wanted to play. Larry: Tennis. Yeah. Oh gosh. So, we get to the courts. Janna: Let me see. Would that be a good choice? Hmm. Larry: They're all slippery with puddles everywhere. Janna: I've slipped. I've had a Bead injury, Head Injury. Larry: Yeah. Janna: Bread injury too maybe. Larry: A long time ago. You didn't just have it today. Janna: No, not today. But maybe it's best that we do something different. Larry: Yeah, I mean what you said was let's go do a podcast and so here we are looking out the window and thinking, wow, we didn't expect to be doing this today. Janna: Well, I have a passion for pathways, neural pathways in particular. Larry: Okay. Let's talk about it. Janna: Maybe we could go with that. Larry: Okay. Okay. Let's do it. Janna: As I've walked through my life, I haven't taken much thought of neural pathways at all. Why should I? Everything's going, clicking along here. And now I come into this thing where my brain is not working very well at all. And it occurs to me that there are neural pathways to the brain and some of them are working and some seem not to. They seem to have a big roadblock. So, what to do about it? Can we do anything to help or alleviate that situation? I have a friend who is amazing. She is unable to walk in certain ways because she got smashed in an accident and lost the ability to walk real easy, but she is no victim by any stretch of the way. So, I thought, well, why don't I talk to her, and she'll give me maybe an idea of how she is so, hmm, adaptable. I'd like to imagine that I have a quiver of options, choices, as I walk through this pathway of realizing I have limitations, but I have options for how I will react to them. And in that, I think back to little children who are learning to do something. A little one-year-old is trying to take a step, but kind of flailing a little bit. And you say, at a girl, at a girl, at a boy. You can do it. And you clap for them and as soon as they can have any success, we award that. We celebrate it, let's say. Now, in this situation, when there's times I can hardly even talk, I don't pull that to the front of my psyche. I think, oh, I'm messing up. Oh, I'm blowing it again. Oh, I can't do things well. So, I have to remember that for those of us who have Alzheimer's, sometimes it is very difficult to pull up the thought. But be patient with yourself and train, be aggressive enough to train your partners, your support partners, to cheer you on, at a girl, at a girl, at a boy, for the easiest little things. Larry: Well, I'm constantly amazed at how many, you know, little items, tricks that you've come up with and options that you've taken advantage of. And one of the things that we found out was that ...all right, we want to create new neural pathways, so you have to learn new things. And we were doing a crossword for, I don't know, we've been doing it now for two years, but not just the normal way to do crosswords. And I think the way that you've decided to do it and how we've had to do it does create neural pathways, even though the experts say that, you know, it's already information you know. In the Alzheimer's patient, you guys lose what you already know. So, you're having to relearn many things and your brain's having to kick in in that way. So I don't know, maybe we can describe kind of that particular technique as one of the adaptations that you've made and one of the options that you've taken to create neural pathways. And it's really, really working well. Janna: I'd suggest that we should start with realizing that, what was that thing called that we do? Crosswords are one thing to his mind and a different thing to my mind. I don't even know the names of the words and I can't think very well about it a lot of times. I can't, I am not, I don't want to say can't. I don't read. I remember pretty well, at least for one second or two. Larry: Well, so that's kind of the way that it's different than a person that sits down with a crossword and comes up with things they already know. In many cases, you're learning the word for the first time. Janna: So, you have to remake, you kind of are remaking the whole game. Yeah. So, I read the clue and it, what happens is, is that you come up with a word that we don't really know very well and/or know at all. And I work around it and for example, here's one, a noisy racket, a noisy racket. So I just say a noisy racket and then you, and I say it's three letters and what would it be? And we have no letters to start with, haven't worked around yet. And this is a, a word and you would say, what? No idea, right? It didn't jump out of my head right away. Yeah. I, in my head, I'm thinking it could be a big ado, you know, ADO, but no. So then I have to work around it. And as I do the downs and the crosses and whatnot, and I get maybe the first letter and the first letter is D. And so I say, okay, first letter D. So that, that wasn't there until I, as her helper worked, worked it around to, to find out that that was the end of another word. Janna: You gave me that. Larry: Yeah. So, I give you that cue. Janna: Boost, right? That boost. Yeah. Larry: And then, so that, that really doesn't, does that ring a bell? Noisy racket with a D, three letters. Janna: I want to say dong, but I know that's not it. Ding dong. Larry: So without much pause in between, you know, a person doesn't want to feel like what? You don't want to feel like, oh, I don't know anything, you know? So, I just try to keep it upbeat and try to keep it positive. And I say, okay, well, the second letter is i. So, it's D-i blank . And so, there's a, the blank is a word. Janna: Din? Larry: Din! Yes. Din. Good. Okay. Janna: So, we got to feel free to take chances and it's, it's just fine to fail. It's fine to fail. Larry: And you know, we're, we're using the Dell Puzzle Lover's Easy Crosswords. Get that at the grocery store in the checkout stand. And they have it like every month or two, I think it's every month. So, it's a Puzzle Lover's Easy Crosswords. And the reason we're using Easy Crosswords, they do have words we don't know, but you need to have success. Janna: Yes. You need to experience success. Larry: Yeah. And so, when we're, we're working it through, I'm, because I'm able to, with the Easy Crosswords, I'm able to pretty much know the answer..I could go to the back of the book and sometimes I have to, but you know, I pretty much know the words so I can give clues. And then if, if, if the clues aren't working and not getting the word, then I can change it up. Like we're playing some other type of game. I can say, you know, it's a much to do about nothing or a much to do about nothing. Or I could say it rhymes with tin, you know? And so finally we get the word. So, you always do get the word. And I think that's, that's important. It rhymes with tin? Din. Larry: Din. Okay. Yeah. Okay. So, one way or another ...or I'll make some kind of an analogy. Janna: But you help me to be successful. It's not like when you're competing as you did with, as a child, you know, I can, I've got it. I've got it. I've got it. No, that doesn't help me at all. Larry: I think for some of the people that might be like, ”Oh, that's too easy.” You know, “I can just read it and get it,” you know? But at some point, this is a great way to regenerate, maybe create new workarounds for neural pathways. So, I find I get real self-conscious and just angst full of trying to figure out what word and all that. And then I realize, no, everybody wants me to be successful. I want to be successful. I don't need to be paranoid. I need to just take a chance. It occurs to me that we're referring to neural pathways and perhaps people don't realize what that means. So, let's make that clear. Larry: Yeah, because your whole life you're making neural pathways and the way that that happens is that you're learning new things and the more new things you learn, apparently this, you guys can do research on this, but we've done quite a bit of research on neural pathways and creating those pathways, creating new neurons requires just a learning that goes on in life and then your education. Janna: And repetition, repetition. Larry: So cognitive reserve would be the neural pathways that you still have that you've created throughout your life. And then now that you have Alzheimer's, the doctors tell us that you can create new neural pathways when you learn new things with the part of your brain that's still working. So that's what we're trying to get to. And you've done a marvelous job at figuring out ways to do that. Janna: Hey, I have been called an Alzheimer patient. I didn't like it. I don't like it. Why don't I like it? I guess it sounds like she's a loser. She's a goner. And then they say, mmm, patient. Mmm. What else could I say? What if I turned it around, just flip it over and said Thriver. Can you choose to thrive? We can choose to smile. You can choose to look grumpy. I'm going to choose to thrive. Larry: It seems like we've got a new vocabulary starting here. Janna: Yes. Words are important. For instance, instead of I'm an Alzheimer's patient or I'm an Alzheimer's victim, I coined the phrase Alzheimer's ThriverTM. Larry: It's like you're a person with Alzheimer's, like when they say a Cancer thriver. Janna: You have red hair or green hair or whatever. Larry: Yeah. Janna: It's not a judgment. Larry: Yeah. It doesn't pigeonhole you, does it? Janna: No. Larry: And so, I really like that. And you've told me you feel like others should take on that attitude too and call themselves thrivers. We could have a whole community of Alzheimer's thrivers instead of Alzheimer's patients. Janna: Let's start a fad. You've also coined the phrase Care Partners. What's the difference between a care partner and a caretaker? Janna: I'm going to speak directly to you, another person like me who has Alzheimer's, okay? So, we are not victims. I want to be sure we understand that. We have to teach people not to treat us like victims. So, do you like this phrase caretaker? Do you want somebody to be your caretaker? I don't think so. I sure don't. So, I want to be a Care Partner. That's acceptable I'd do that. Larry: So, I'm your care partner because I do care about you and I do things to help. When I let you. Janna: When I let you. I'm in charge. I've got to remember I'm in charge. Larry: Well, I wear the pants in the family as long as you give me permission. Maybe you guys out there in podcast land can think of some other words that pigeonhole both the care partners and the Alzheimer's patients that you don't like. Janna: So that we can veto all of them. Big list up there and put it on a veto. Yeah. Let's make a chart. Be fun. Larry: This but not this. This but not this. Right? Yeah so, I think it's important to for your self-confidence. Right? I mean because you are a person, as I say, with a disease. Janna: But I'm not the disease. It's not the disease. Together: And it doesn't. Doesn't define you. Larry: That's very important. Well, I think you've really explained a lot today about some neural pathways and maybe some ways to do it. Janna: We try. Larry: We've given you one example of the crossword and how to do it differently. Janna: I'm hoping the people in our audience will be thinking, hmm, neural pathways, what is that? Maybe they'll look it up and find out more. And there's probably something that could have apply to everybody's psyche about pathways. What is that about anyway? And are they positive and negative? Is it directional? What is that about? And what can I benefit from? How can I benefit? Larry: Good words, Jan. Janna: This is Janna, an Alzheimer's ThriverTM. And you've been hearing this from the horse's mouth. Signing off until next time. [Janna ends with a little playing of the flute, along with her stringy friends] 🔬 Related Research & Articles • Show Notes – Revised Resource Section 🔬 Related Research & Articles Plasticity in Early Alzheimer's Disease: An Opportunity for Intervention — Review showing potential in adaptive neural rewiring postdiagnosis. 🔗 Dr. Brian Ableson Physical Activity and Neuroplasticity in Neurodegenerative Disorders — How exercise and dual-task cognitive engagement strengthen neural pathways. 🔗 Frontiers Lifelong Cognitive Reserve Reduces Dementia Risk — Meta-analysis linkin enriched lifestyles to lower dementia incidence. 🔗 PMC Association of Lifelong Cognitive Reserve with Dementia and MCI — Cohort data showing cognitive resilience even among low-education elder populations. MCI Why Words Matter: “Care Partner” vs “Caregiver” – Alzheimer’s San Diego Discusses the language shift from “caregiver” to “care partner,” emphasizing empowerment and mutual respect. 🔗 Alzheimer’s San Diego
A Passion for Pathways [Janna Starts off with playing Flute] Janna: This is Janna, an Alzheimer's driver, along with my husband Larry. Hi everyone. Janna: I have discovered that I have a passion for pathways, neural pathways that is. Today you'll be hearing from the horse's mouth. [More Flute] Larry: Well, here we are again sitting in the office looking out our window and it is drizzling out here in sunny San Diego. Janna: Yeah, but I really wanted to play. Larry: Tennis. Yeah. Oh gosh. So, we get to the courts. Janna: Let me see. Would that be a good choice? Hmm. Larry: They're all slippery with puddles everywhere. Janna: I've slipped. I've had a Bead injury, Head Injury. Larry: Yeah. Janna: Bread injury too maybe. Larry: A long time ago. You didn't just have it today. Janna: No, not today. But maybe it's best that we do something different. Larry: Yeah, I mean what you said was let's go do a podcast and so here we are looking out the window and thinking, wow, we didn't expect to be doing this today. Janna: Well, I have a passion for pathways, neural pathways in particular. Larry: Okay. Let's talk about it. Janna: Maybe we could go with that. Larry: Okay. Okay. Let's do it. Janna: As I've walked through my life, I haven't taken much thought of neural pathways at all. Why should I? Everything's going, clicking along here. And now I come into this thing where my brain is not working very well at all. And it occurs to me that there are neural pathways to the brain and some of them are working and some seem not to. They seem to have a big roadblock. So, what to do about it? Can we do anything to help or alleviate that situation? I have a friend who is amazing. She is unable to walk in certain ways because she got smashed in an accident and lost the ability to walk real easy, but she is no victim by any stretch of the way. So, I thought, well, why don't I talk to her, and she'll give me maybe an idea of how she is so, hmm, adaptable. I'd like to imagine that I have a quiver of options, choices, as I walk through this pathway of realizing I have limitations, but I have options for how I will react to them. And in that, I think back to little children who are learning to do something. A little one-year-old is trying to take a step, but kind of flailing a little bit. And you say, at a girl, at a girl, at a boy. You can do it. And you clap for them and as soon as they can have any success, we award that. We celebrate it, let's say. Now, in this situation, when there's times I can hardly even talk, I don't pull that to the front of my psyche. I think, oh, I'm messing up. Oh, I'm blowing it again. Oh, I can't do things well. So, I have to remember that for those of us who have Alzheimer's, sometimes it is very difficult to pull up the thought. But be patient with yourself and train, be aggressive enough to train your partners, your support partners, to cheer you on, at a girl, at a girl, at a boy, for the easiest little things. Larry: Well, I'm constantly amazed at how many, you know, little items, tricks that you've come up with and options that you've taken advantage of. And one of the things that we found out was that ...all right, we want to create new neural pathways, so you have to learn new things. And we were doing a crossword for, I don't know, we've been doing it now for two years, but not just the normal way to do crosswords. And I think the way that you've decided to do it and how we've had to do it does create neural pathways, even though the experts say that, you know, it's already information you know. In the Alzheimer's patient, you guys lose what you already know. So, you're having to relearn many things and your brain's having to kick in in that way. So I don't know, maybe we can describe kind of that particular technique as one of the adaptations that you've made and one of the options that you've taken to create neural pathways. And it's really, really working well. Janna: I'd suggest that we should start with realizing that, what was that thing called that we do? Crosswords are one thing to his mind and a different thing to my mind. I don't even know the names of the words and I can't think very well about it a lot of times. I can't, I am not, I don't want to say can't. I don't read. I remember pretty well, at least for one second or two. Larry: Well, so that's kind of the way that it's different than a person that sits down with a crossword and comes up with things they already know. In many cases, you're learning the word for the first time. Janna: So, you have to remake, you kind of are remaking the whole game. Yeah. So, I read the clue and it, what happens is, is that you come up with a word that we don't really know very well and/or know at all. And I work around it and for example, here's one, a noisy racket, a noisy racket. So I just say a noisy racket and then you, and I say it's three letters and what would it be? And we have no letters to start with, haven't worked around yet. And this is a, a word and you would say, what? No idea, right? It didn't jump out of my head right away. Yeah. I, in my head, I'm thinking it could be a big ado, you know, ADO, but no. So then I have to work around it. And as I do the downs and the crosses and whatnot, and I get maybe the first letter and the first letter is D. And so I say, okay, first letter D. So that, that wasn't there until I, as her helper worked, worked it around to, to find out that that was the end of another word. Janna: You gave me that. Larry: Yeah. So, I give you that cue. Janna: Boost, right? That boost. Yeah. Larry: And then, so that, that really doesn't, does that ring a bell? Noisy racket with a D, three letters. Janna: I want to say dong, but I know that's not it. Ding dong. Larry: So without much pause in between, you know, a person doesn't want to feel like what? You don't want to feel like, oh, I don't know anything, you know? So, I just try to keep it upbeat and try to keep it positive. And I say, okay, well, the second letter is i. So, it's D-i blank . And so, there's a, the blank is a word. Janna: Din? Larry: Din! Yes. Din. Good. Okay. Janna: So, we got to feel free to take chances and it's, it's just fine to fail. It's fine to fail. Larry: And you know, we're, we're using the Dell Puzzle Lover's Easy Crosswords. Get that at the grocery store in the checkout stand. And they have it like every month or two, I think it's every month. So, it's a Puzzle Lover's Easy Crosswords. And the reason we're using Easy Crosswords, they do have words we don't know, but you need to have success. Janna: Yes. You need to experience success. Larry: Yeah. And so, when we're, we're working it through, I'm, because I'm able to, with the Easy Crosswords, I'm able to pretty much know the answer..I could go to the back of the book and sometimes I have to, but you know, I pretty much know the words so I can give clues. And then if, if, if the clues aren't working and not getting the word, then I can change it up. Like we're playing some other type of game. I can say, you know, it's a much to do about nothing or a much to do about nothing. Or I could say it rhymes with tin, you know? And so finally we get the word. So, you always do get the word. And I think that's, that's important. It rhymes with tin? Din. Larry: Din. Okay. Yeah. Okay. So, one way or another ...or I'll make some kind of an analogy. Janna: But you help me to be successful. It's not like when you're competing as you did with, as a child, you know, I can, I've got it. I've got it. I've got it. No, that doesn't help me at all. Larry: I think for some of the people that might be like, ”Oh, that's too easy.” You know, “I can just read it and get it,” you know? But at some point, this is a great way to regenerate, maybe create new workarounds for neural pathways. So, I find I get real self-conscious and just angst full of trying to figure out what word and all that. And then I realize, no, everybody wants me to be successful. I want to be successful. I don't need to be paranoid. I need to just take a chance. It occurs to me that we're referring to neural pathways and perhaps people don't realize what that means. So, let's make that clear. Larry: Yeah, because your whole life you're making neural pathways and the way that that happens is that you're learning new things and the more new things you learn, apparently this, you guys can do research on this, but we've done quite a bit of research on neural pathways and creating those pathways, creating new neurons requires just a learning that goes on in life and then your education. Janna: And repetition, repetition. Larry: So cognitive reserve would be the neural pathways that you still have that you've created throughout your life. And then now that you have Alzheimer's, the doctors tell us that you can create new neural pathways when you learn new things with the part of your brain that's still working. So that's what we're trying to get to. And you've done a marvelous job at figuring out ways to do that. Janna: Hey, I have been called an Alzheimer patient. I didn't like it. I don't like it. Why don't I like it? I guess it sounds like she's a loser. She's a goner. And then they say, mmm, patient. Mmm. What else could I say? What if I turned it around, just flip it over and said Thriver. Can you choose to thrive? We can choose to smile. You can choose to look grumpy. I'm going to choose to thrive. Larry: It seems like we've got a new vocabulary starting here. Janna: Yes. Words are important. For instance, instead of I'm an Alzheimer's patient or I'm an Alzheimer's victim, I coined the phrase Alzheimer's ThriverTM. Larry: It's like you're a person with Alzheimer's, like when they say a Cancer thriver. Janna: You have red hair or green hair or whatever. Larry: Yeah. Janna: It's not a judgment. Larry: Yeah. It doesn't pigeonhole you, does it? Janna: No. Larry: And so, I really like that. And you've told me you feel like others should take on that attitude too and call themselves thrivers. We could have a whole community of Alzheimer's thrivers instead of Alzheimer's patients. Janna: Let's start a fad. You've also coined the phrase Care Partners. What's the difference between a care partner and a caretaker? Janna: I'm going to speak directly to you, another person like me who has Alzheimer's, okay? So, we are not victims. I want to be sure we understand that. We have to teach people not to treat us like victims. So, do you like this phrase caretaker? Do you want somebody to be your caretaker? I don't think so. I sure don't. So, I want to be a Care Partner. That's acceptable I'd do that. Larry: So, I'm your care partner because I do care about you and I do things to help. When I let you. Janna: When I let you. I'm in charge. I've got to remember I'm in charge. Larry: Well, I wear the pants in the family as long as you give me permission. Maybe you guys out there in podcast land can think of some other words that pigeonhole both the care partners and the Alzheimer's patients that you don't like. Janna: So that we can veto all of them. Big list up there and put it on a veto. Yeah. Let's make a chart. Be fun. Larry: This but not this. This but not this. Right? Yeah so, I think it's important to for your self-confidence. Right? I mean because you are a person, as I say, with a disease. Janna: But I'm not the disease. It's not the disease. Together: And it doesn't. Doesn't define you. Larry: That's very important. Well, I think you've really explained a lot today about some neural pathways and maybe some ways to do it. Janna: We try. Larry: We've given you one example of the crossword and how to do it differently. Janna: I'm hoping the people in our audience will be thinking, hmm, neural pathways, what is that? Maybe they'll look it up and find out more. And there's probably something that could have apply to everybody's psyche about pathways. What is that about anyway? And are they positive and negative? Is it directional? What is that about? And what can I benefit from? How can I benefit? Larry: Good words, Jan. Janna: This is Janna, an Alzheimer's ThriverTM. And you've been hearing this from the horse's mouth. Signing off until next time. [Janna ends with a little playing of the flute, along with her stringy friends] 🔬 Related Research & Articles • Show Notes – Revised Resource Section 🔬 Related Research & Articles Plasticity in Early Alzheimer's Disease: An Opportunity for Intervention — Review showing potential in adaptive neural rewiring postdiagnosis. 🔗 Dr. Brian Ableson Physical Activity and Neuroplasticity in Neurodegenerative Disorders — How exercise and dual-task cognitive engagement strengthen neural pathways. 🔗 Frontiers Lifelong Cognitive Reserve Reduces Dementia Risk — Meta-analysis linkin enriched lifestyles to lower dementia incidence. 🔗 PMC Association of Lifelong Cognitive Reserve with Dementia and MCI — Cohort data showing cognitive resilience even among low-education elder populations. MCI Why Words Matter: “Care Partner” vs “Caregiver” – Alzheimer’s San Diego Discusses the language shift from “caregiver” to “care partner,” emphasizing empowerment and mutual respect. 🔗 Alzheimer’s San Diego
“Afraid to Share the Diagnosis? How Janna Told Her Family and Took Back Her Voice” [Janna Performs Flute Intro] Janna: Hi, I'm Janna and I'm an Alzheimer's driver. I know it sounds like an oxymoron. Larry: Are you calling me a moron? Janna: If the shoe fits. No, I wouldn't do that to you, honey. (Chuckles) Larry: This is her husband, Larry, and you're going to hear from Janna. Janna: The horse's mouth. And by the way, I'm the one with the Alzheimer's. Today, I'd like to talk about how I broke the news to the family. And then I'd like to share an epiphany that helps me to advocate for myself. Larry: Well, since the first reaction to the Alzheimer's diagnosis from the neurologist is generally denial to some degree. Boy, it takes a minute before you're ready to talk to the family, but do you feel it's important that the family knows? Janna: I think it’s important that it be out in the light. I don’t think it can be done in a big group. It’s best to do it one-on-one, or with two family members., and to say that we're dealing with it and we're going to be okay. Here's what we need ...here's what would help if you want to be part of the solution, if you want to be part of the winning team. Larry: Okay, so you talked to our sons. We have four sons. So, you talked to them. And I remember they wanted to know all about that. And so, they started just diving into the research. Janna: I'm sure they were trying to figure out how to get me healed, right? Larry: Yeah. Well, or how, you know... Janna: ...how to ampliated the problem... Larry: ...it's tough because as we've said before, if you've known one Alzheimer's patient, you've known one Alzheimer's patient. So, you don't know how it's going to go. And this is part of the process is that, you know, as much as they do the research as much reading as they do, it's going to be difficult. Janna: People react differently. Larry: Yeah. So, they were asking a lot of questions. I remember that. Janna: And I've changed a great deal since then. Larry: Because you were out of it, right? Janna: Yeah, while I was out of it, I felt like I was outside and not on the inside. Larry: And it was hard to know and then not to say anything about it for so long. And it's kind of like you got a secret, right? Janna: The more and more that we got it out in the light, the better and better things got, including my ability to speak. Larry: So once you get past that situation, now we have six grandchildren. So, you told them not to tell the grandchildren, right? Janna: Well, they're different ages. I felt that it was important that we speak to them with an age-appropriate talk. You know, don't want to panic anybody for sure. And don't want to send people in the family into crying. And “Oh, I'm so sorry.” And you know, guess what? I don't want anybody to feel sorry for me. Well I guess I’ve broken that rule now and again, but for the most part, no ...don’t feel sorry for me. Larry: So, it's been ...a year into it. No, it was more than a year, actually. Janna: Do you want to speak to the diagnosis? Larry: Yeah, so, okay, so the diagnosis was at first that they didn't even have a PET scan that could tell if you had Alzheimer's, so they were saying, no, you don't have it. What they do now? But they did come up with it. And then they said, oh, man, yeah, you've got quite a few amyloid plaques there. And that was kind of a shocker because the neurologist originally said, no, it's just a result of your traumatic brain injury when you fell on the tennis court. And actually, that may have caused the whole thing to start the ball rolling. Janna: You might want to share about amyloid plaq... Larry: Yeah, amyloid plaques. Janna: Yeah, because some people might not be aware of that. Larry: Yeah, so we've talked about amyloid plaques, but just basically in a summary. Janna: In case you're just tuning in right now. Larry: Yeah, it's just a quick review. It's just a way that your brain protects itself. It has these Beta amyloids proteins in the brain. And they surround the injured area of the brain. And so, I think we spoke about this before. And then they can get out of hand. And when they do, they tend to start killing neurons. And so that's the whole thing about that. And so, yeah, so the amyloid plaques were there. And so, we knew you had it and you wanted to tell the kids you told them. So how did you go about telling the grandkids that was some years later, but some of them were old enough at that point that you wanted them to know. So, what was that like? Janna: Well, I talked to them, as best I recall, I'm pretty sure it was one-on-one. And said, “You might have noticed that I'm forgetting some things. You might have noticed that I've stumbled sometimes. And that's because I have a problem with my brain, and we need to work on getting it better. So, here's what's happening and here's what I need for you to do.” And then what was it they should do? Janna: Believe that I could thrive. I believe that I'm going to thrive. I'm not going to say, okay, I'm going to get all better. I'll never have a problem. I'll never stumble. None of that. No. But I want our home to be an atmosphere where we believe good things can happen. Miracles even. Larry: Yeah. And you have gotten better in a lot of areas, especially in speaking. Janna: Who would think? Larry: So, you thought it was important to tell the grandkids. Now, when you're out and about with the public or in a group conversation, I have a question about that. If people don't know that you have Alzheimer's, they're just going to treat you normally and they're going to be speaking quite fast and they're going to be expecting you to be right in the conversation. So, let's talk about that a little bit. Janna: Point in case. We're at the tennis court and Larry's going to have a what is it called? Larry: A tennis match? Janna: A match? Yeah. And it was a high level. Good players. We had to go down long way down step, step, step, step. Larry: To get to the benches to watch. Janna: Right. And so, I needed to use the restroom before we went, and Larry went ahead because he was going to play of course. And the lady that was at the desk said, well, you go over there, and you go over there and then, and I said, okay, so which way did you say you go to the right and then you left? And she said, she started to read it ...and then she caught it and she thought this person needs help. So, she came over and walked right over to me. See, see, see right down there, right down there and then when you turn around, there's a bathroom and then you just come out down here. Well, I went in, but I didn't quite know how to get out. What way to turn? How do I get away? And I felt embarrassed, and she was sweet enough that she just walked over. She took my hand, which was very intuitive to her. And you know what? Maybe some people would be insulted by that. But she was showing beautiful empathy to somebody who did not, I didn't need to come out and say, I can't do this because you helped me. She said here, let me take your hand. Larry: On the other hand, there are those that don't have that sensitivity. And, so they're just talking right along. Janna: Well, they just generally, they just go, well, it's right over there. No, it's over there. Right over there. Larry: Yeah. What's a good way to let them know that they need to slow down and maybe let you speak a little bit without embarrassing yourself or making you seem like this person that feels pathetic, you know, which would maybe even cause some people, I would think, to not even want to try. Because I don't want to tell these people that I have a brain problem. Janna: There is something a little bit more neutral, I think. And I say, whether it's profound or not, it’s not profound, but I say, “I have low vision.” And that's so wide. What does that mean? Are you blind or what? No. But I have low vision and I have to concentrate. There's a delay when I'm looking for things. And she just got that “low vision.” And this sweet lady came along side me, treated me like an equal. Larry: So, if you say to someone, I have low vision, but what about if you want them to slow down and listen to you when you're speaking and not jump over your conversation or maybe even pull you out? How do you sensitize them to that? I think you and I talked about this, right? So, it's kind of a loaded question. I was given an example of somebody who had a broken leg and they're on crutches and they're walking across the street and somebody just comes and bumps them on the shoulder. And someone else says, “Hey, you know, that person's got a broken leg. Can't you see that person's having trouble getting across? The least you could do is not bump them. You don't see it coming. They don't perceive it. But with you, they don't see that. Would it be too far-fetched to say something like, “You know what? You speak so quickly. I've got to admire that. You're such a fast speaker. But then what would you follow it with? Janna: I have a hard time following that. Could you slow down a little bit for me or say that again, please? Larry: Okay. So you're not going to come out and tell them you have Alzheimer's? Now, this is a perfect example of the difference between hiding our secret and then maybe bringing it out. Janna: Yeah, and I did hide my secret for quite a while. You know, I was ashamed. I was ashamed. And why am I ashamed? It's a disease. Hey, I got it. Lucky me. How can I deal with it? At least I have a chance to do better. Larry: Yeah, I mean, you have said to our family members, I know, and you may have said to other people that you have Alzheimer's. And so they're going to have to be patient as you speak, because you may not get it out as quickly as they're used to seeing it. I think, just speaking as a person who is on the outside of having it, I think if someone said that to me, and if it wasn't my wife, it was just a stranger said to me, “You know what? I have a problem. I have a dementia. Janna: I don't like that word. Larry: Yeah, me neither. Janna: For some reason, I recoil. Larry: So you like to say a low vision, but what about when they're talking? So that has another vision. Janna: I think if there anything comes out like there's a deficit and they need to slow down and somebody can't think and move as fast as other people can. I think people naturally kind of slow down. They put their mind into being empathetic. I would hope most people are kind of empathetic. If you're humble and let them know, “Something's going on, could you give me a break here?” Larry: I would imagine that would be very difficult for some people, but you do have to advocate for yourself, right? Well, yeah. I mean, if you don't, basically, you know, people are just going to treat you as if ...because I mean, most Alzheimer's patients I've seen in our circles and support group and those kind of things, they could get away with in a social group, just kind of being like a normal person. Janna: They just don't speak. Right? Larry: Well, and then sometimes they're on, they're right on, right on cue. So, it's like, “I don't see that he has a problem.” You know, if you were to mention it, it's like, “hmm, he didn't seem like he had a problem with me.” But as far as advocating for yourself, I think I have seen also people that just shut up. They don't do anything. Say anything. They just sit back and observe. What is it that you do? You have a technique, and this technique is very interesting because this is maybe what you're going to share your epiphany about echoing? Janna: Yeah, echoing. Larry: What is that? I'm listening to somebody's talk, and I want to get everything that they're saying. And I'm trying to. I listen really hard, but for some reason, it just goes by and I don't really grab it. So, I thought, well, maybe if I just think as if with my echo with my lip, and almost hear every word going by that they're saying, but as a physical experience is going through, because I'm using my lip to follow what they're saying. And I found it makes me much more alert. Maybe it doesn't help me to actually get out there and give speeches and speak and project my thoughts to others, but it certainly helps me to gain those thoughts and gain the information that I'm hearing go by. Larry: So that technique would be that if someone's speaking ...okay, let me get this straight. They're saying the words and you're saying them in your head and you're lipping them quietly with your lips. Janna: Yeah, and the head wasn't enough for me. I needed something more - physicality. So, there's my lips and I've got them together, but when I listen to what their person, I feel like I'm fascinated with them. I feel like I'm on the edge of my chair wanting to hear what they say next, and lip is wiggling as I'm kind of imitating what they're saying. Larry: Yeah, I've seen you do that. Janna: It's silent, but it helps me to comprehend it better. Larry: Okay. So, if you're out there in podcast land and you want to try this technique, why don't you, while I say some words, why don't you try and say those words in your head at the same time as if you're saying them and then be moving your lips. Let's try it. Janna: Should we have them being verbal with it or just moving their lips? Larry: Just moving their lips and trying to say it exactly at the same time I say a word. Janna: And I find that I really have to study that person, because I look at their lips. Janna: You look at their lips. Larry: You're watching. Okay, so I'll just say a quick poem. “Jack be nimble, Jack be quick, Jack jump over the candlestick.” So, how did you do? We'll never know. Janna: So, “Jack be nimble, Jack be quick, Jack jump over the candlestick.” Larry: Yeah, so you, you said it way after I said it, but what we're asking is that they would say it exactly at the same time, or very close to the same time. Janna: Okay, so that's ...I'd like to say I could be looking at the letters. And great for you, if you're somebody who has Alzheimer's, and you can follow those letters. Unfortunately, I can't with a TBI. Larry: Well, I don't know if they're speaking. They're not putting the words up on a screen. Which brings up another point. So, if you're following a plot, say, on Audible, or something like that, you could be doing this technique, couldn't you? Janna: Certainly. Larry: Or when anybody speaks, you could be trying to say the words at exactly the same time, and maybe follow more intelligibly the things that are happening. It is hard to follow a plot, isn't it? Janna Oh gosh, yes. Larry: Yeah. And if someone doesn't have, hasn't had the Alzheimer's for a long time, maybe you'll just kind of put this in your cadre of techniques that you're going to use, because in the future, it may happen that you are having trouble in this area. Janna: Or somebody you love having trouble. Because it's real easy for that somebody who is not getting it, and they're losing more and more to just give up. Just give up. Because they're not learning to read more quickly, probably. And so they're out of the conversation a lot of times, and that's not just no fault of the other people. Yes, they can speak more fluently. Good for them. That's great. I used to be able to do that too. But you have to get rid of it past the, what's that called, your pride. You've got to get past the pride and go, hey, so I can't maybe enter into the conversation like I did before, because I stumble too much. But I certainly can be involved in what's being said, and I'll get a chance to talk now and then. Maybe just with one loved one, or just maybe me knowing that. Thank you, Lord. I listened to that conversation. I gathered some thoughts, and I followed it. And that's renumerating for me. And maybe that's all I get, but it's something. Larry: Yeah, so this all falls under the heading of advocating for yourself, really. And you did that when you talked to the kids. You did that when you talked to the grandkids. Our kids are like in their 40s, so you talked to them. And discretion only. You know, they say, don't throw your pearls before swine. Don't think that everybody's going to get it when you tell them that you have Alzheimer's. Janna: It’s hard for them. Larry: Some people are going to actually feel like the guy that bumps the guy with a broken leg in the crosswalk and just moves on by and doesn't care. Sometimes it feels that way. Some people, you know, they have their own lives there in a hurry. Maybe they don't want to take the time. But I find by and large, most people do treat you kindly when you talk to them about your situation. Janna: Well, I'll tell you what it probably sure makes them feel smart. “Could you help me write, know that word, what that word is?” “Oh, sure.” Larry: So, in future podcasts now, we're going to be talking about other epiphanies Janna has had, right? Janna: As far as I can go with that. Larry: Yeah, as far as you can go. Yep, yep. That's helped her to thrive and be an Alzheimer's thriver. I'm totally impressed. Janna: How about the music part? Larry: Well, we talked about that. Janna: Okay. Yeah. I knew that. I was just testing you. Larry: But let's repeat it. You're the one that's playing the flute on all of these parts and you do play in a couple hours a day. Janna: I'll be honest though. Some of those little pieces ...I presented a couple years ago. Larry: Yeah. Yeah. Ten years ago. One that we did on faith that that was a recent recording of me playing guitar and you playing flute. Janna: Oh, yeah. For sure. I play a lot of things. And I have to, as it's been said before, in order to play these things, I can't just go, “Okay. I learned that. That's great.” But now I have that song, and the next ...nope, nope , It goes away if I don't practice it again within two or three days. Larry: Well, I think the next podcast is going to be on the different rooms of the house and what goes on there. So, we'll be talking about the living room. Kitchen. Laundry room. And how to get organized? Bathroom. And how we deal with conflicts or problems that come up in those different areas of the room and how kind of what goes on there. You know, most people don't know what other people are doing in their house. Everything's closed. The curtains are closed. Everybody's private. We're pretty transparent, right? Janna: Unfortunately, I have to be. So especially if sundowning is happening and it's dark. Yeah. Larry: So, we're going to be presenting those. So, keep listening. We’re going to wrap this up for now and give you the chance to gnaw on what you're thinking about. I’ll bet you'll have some epiphanies. Larry: This is her husband, Larry. And I must confirm that Jenna is thriving. We have many of the same problems that you may have as a couple. We don't know if you're a male or female listening, but you know, 66%, almost 70% of the Americans that have Alzheimer's are women. Janna: Sorry girls. Larry: Yeah, sorry girls. So that's the majority there. Janna: You should repeat that. Larry: Yeah. So that's two thirds of Americans with Alzheimer's are women. And so that puts folks like me, the man in this position of, you know, being the loved one who is going through it. And what we want to do is we want to thrive both as female and male. We want to thrive. And so, we don't want it to take or they say that we don't want to take two of you, but it's not really taking you. Like it's taking some, I must say, and maybe it has to do with all the things you're doing. I just really appreciate. Janna: Well, you really have to adapt. You really had to adapt. You wouldn't have to, but you do adapt. Larry: And so, we thrive. Yeah. So, we want you to thrive too out there. Janna: Yep. So, this is Jenna and my husband, Larry, signing off for this time. You've been hearing from the horse's mouth. [Janna Plays Flute Outro] Links and Research on when to tell others: 1. European Geriatric Medicine (2021) “Family members’ attitudes towards telling the patient with Alzheimer’s disease their diagnosis: a 20year repeat study” In Ireland, family members surveyed in 2021 were over 4× more likely to favor disclosing the diagnosis compared to those in a similar study two decades earlier Mayo Clinic Press+4SpringerLink+4PubMed+4 . The shift reflects broader recognition of patient autonomy, with disclosing seen as facilitating proactive planning rather than evoking negative reactions SpringerLink . 2. Physicians Postgraduate Press (2019) “Disclosure of Alzheimer’s Disease and Dementia: Patient and Care PartnerCentric DecisionMaking and Communication” This evidence-based consensus emphasizes that early and timely disclosure, paired with psychoeducation and care planning, improves quality of life, allows shared decision-making, and reduces harm by enabling earlier intervention PubMed . Disclosing sooner supports involvement in planning, access to services, and better management of symptoms. 3. Alzheimer’s & Dementia Translational Research & Clinical Interventions (2024) “Personal value of Alzheimer’s disease biomarker testing and result disclosure from the patient and care partner perspective” Disclosure of biomarker results (e.g. CSF/amyloid tests) provided diagnostic clarity, reduced anxiety, and motivated lifestyle changes and future planning, both for patients and care partners Verywell Health+12Alzheimer's Journals+12PubMed+12 . Many participants valued the knowledge and reported positive emotions after disclosure. Some noted that patients hesitated to share to avoid burdening others, but families often appreciated the information and wanted to support planning PMC+3Alzheimer's Journals+3PMC+3 . 4. Systematic Review (UCL, 2021) “Factors associated with disclosing a diagnosis of dementia to one’s social network” Synthesizing international qualitative studies, this review highlights that self-disclosure often reduces stress and burden, alleviates pressures to hide symptoms, and creates opportunities for social support PMC . However, stigma remains a barrier—fear of embarrassment, social exclusion, or changes in others’ behavior are frequently reported PMC .