“Slowing the Alzheimer's Spiraling Trajectory” 

[Janna Plays Flute Intro] 

Janna: Hi, I'm Janna! 

Larry: And this is her husband, Larry. 

Janna: I'm an Alzheimer's Thriver.TM Now, to start off with you might think, “Oh that sounds so positive ...isn't that wonderful.” But like I’ve said before, it wasn't always like that. And it wasn't like it for a long time. Denial is huge, but still I thought, “Well, maybe there's something I can do to slow things down. So, what can I do?” 

One thing I considered was to just stop trying. Maybe I don't really need to do so much talking, after all, I know a lot of people that keep to themselves, and they don't use a lot of verbal expression ...they seem to get by just fine. Maybe I would be more at peace if I just stopped trying to talk and interact with people. But wait a minute. I'm a social being and I can realize that was just gonna go backwards. I don't like to be left out. I want to be a part of things. What to do. So, I thought, “Well, let me see. Maybe I can do this ...I'm just gonna just get up right now. Yesterday I was stumbling when I was trying to talk, so maybe if I just got up turned around and started walking with a pace, just started pacing and just saying some words, perhaps. Maybe at the beginning, not saying the words, not being able to even release the words, but as I keet going maybe I could get to the place that eventually, I am saying this-is-what-I 'm-doing-to-day-here-we-go-let-me-tell-you etc. 

Larry: Well, let's do that together. So, let's pick a word that starts with “A” and you say your word and then I'll say my word. “Apple.” 

Janna: Annie. 

Larry:  A-Aron. 

Janna: Adrianna. 

Larry:  Ace. 

Janna: Ashes. 

Larry:  Awkward 

Janna: Angular. 

(Both Laugh) 

Larry:  And you would walk along ...you would step, and you would say words. And it didn't matter if you said the same word a second time, the same word. 

Janna: Well for me, it doesn’t. I mean, you’re quick. I’m supposed to come up with words when I can ...you come up with them fluidly. I get some grace time. 

Larry:  So, did that help. 

 Janna: Yes. And we started out going very slowly, just going like ...okay so you started saying those words just started coming out 

Larry: Apple. (After a long Pause they both laugh) That was pretty slow (Jokingly). 

Janna: Ha, ha ...yeah. And then afterwards it got going faster, but at the beginning it was very slow. And remember what I had to do with my face? 

Larry: You had to smile. 

Janna: I had to smile. It set me free. 

Larry: Yeah, but going outside was cool too, because when you went outside you said you said you immediately felt better about things. Okay, so you started saying those words, they just started coming out. You did that. You said yesterday, but you meant what? A long time ago? 

Janna: Some time ago. 

Larry:  Has that ...how have you found that that's helped in your conversations ...you know, talking? 

Janna: Oh, hugely. You know, I'm in a support group ...an Alzheimer's support group, and we have conversations, and to an extent they're conversations ...to a great extent too, it's kind of stumbling along with our speaking and as I listen to other people report, I think I want to try and keep my words going ...I want to be able to express myself. 

Larry: Okay, ...so, that's great. And we can also pick categories, we’ve also done that. So, maybe a category like ...in our case, maybe tennis. Or, if you’re into a different sport, maybe swimming, 

Janna: Or just sports in general. Make it very broad. 

Larry: Just pick a category and then just start saying words in that category. Maybe even say something about the topic that you know about and by just spitting those words out. Now, we're on a trajectory. The Trajectory, diagnosis, the prognosis for Alzheimer's is that it's gonna get worse, blah blah blah... 

Janna: No. No, I deny that ...nope ...denial ...denial. 

(Both chuckle) 

Larry:  And yet what you had said at the beginning of this podcast is you want to slow the progress of the disease ...or stop it completely, if possible. 

Janna: To that end, quitting is not acceptable because if I stop trying, it will get worse. I must keep going forward, even if the best I can do is just not lose more than I've already lost. I love how the neurologists refer to neural pathways, and I think of that myself, but then I think well what is the purpose what is the end goal what's the end game on that? What does it mean by neural pathways? I think that it means that your brain is working, and it’s healthy enough to keep pushing through and find pathways for the brain so it can function well. But then I think, well, what can I do to cause that to happen? And it occurs to me that I need to practice a lot and reflect on what kinds of things could help me to remember. That brings me to the fact that I play flute. And I practice a ridiculous amount of time. I used to be really good, but now, of course not. So, I practice, and I've been practicing, let's say, an hour a day. 

Well, that was good for a while. Guess what? Now, if I only do an hour a day, it's not necessarily enough. I might need to do more. 

For sure, I can't stay away from my goals for a week or two, because when I go to go back to them, they've slipped away., and I have to start again ...which is not a bad thing. But it's not the most effective way. So now I'm thinking about, how can I get those neural pathways in my mind and access them when I'm trying to speak or express myself? 

Larry: So, you know, many of these people are doing their own research. I know we did. And one of the things that we found was that these amyloid plaques that are attacking the brain are these proteins that are there to help protect certain sections of the brain, and then it just gets out of hand1. But those sections of the brain that aren't encompassed completely by the plaques and the tangles, are workable, right2? And so, it's your theory, I guess it sounds like, it's your theory ...and I would have to agree with you that this is, I've seen the results here, is that you have created new pathways. You have come from a place where you were stumbling, and now you're no longer stumbling as much. 

Janna: Except I would say, they don't necessarily go forward. It's not like, oh boy, opening, opening, opening. Sometimes it's just, if you don't fight for it, it's not, it's not that it's going to be a new opening necessarily. It might just be, well, you're not losing more ground. 

Larry: So, in that sense, you're slowing the trajectory3, ...pace, ...the tempo with which you're losing some of those things. 

Janna: And even when you're in a battle like that, a lot of times you think, is there a chance I could win? And when you think you reflect. ...okay, there's no way I'm going to win, as far as getting all completely better from this. But I have to work really hard just to stay on a level ground. 

Larry: So, there are gains with the losses. And some of the losses you've had to, I guess, to accept. What about walking now? You, when you're walking, what about that part where you used to stumble, right? 

Janna: Yes, I did. I stumbled and fell a lot. And I don't know what made me think this way. ...maybe just a reaction, but I started looking down at my toes. Every time I stepped, I looked at my toe. And then as we're walking through, like, especially if it's through a grassy area, and there's different levels and stuff, I particularly concentrate on what level it's at. And if I can't see it clearly and perceive it clearly, then I lift my feet up and go, right, left, right, left, right, left. 

Larry: So you lift your knees up pretty high? 

Janna: Right, right. And somebody would think, what is that person doing? What that person is doing is not slipping. They're not tripping. And if you just go straight through there and you don't catch where the trick .... 

Larry: Trip 

Janna: ...Trip is. 

Larry: See how I'm helping? I shouldn't be doing that, right? 

Janna: No, no, that's okay. A little bit here and now. 

Larry: Yeah ...so sometimes it's a question too of when do I fill in the word, and when do I just let it go? And it depends on the time of the day, a lot of times, like if you're sundowning, you might need some help. 

Janna: Yeah, sundowning is such a fun time? 

Larry:  And we have an episode on that. 

Janna: Funest time you could ever have. 

Larry: I think now one of the episodes we are going to do and we should tell the folks about an upcoming episode will be on just some of the ways that you've changed your habits, your exercise habits, eating habits, things. And again, we don't know how to cure any of this. 

Janna: You know what? Don't get carried away, but no, we don't know, but we've experimented with things that we think are happening and can be improved. Yeah. And lo and behold, yep, it helped a lot. And part of us is how we eat. 

Larry: Yeah. So, we're going to be talking in the future about safety. We're going to be talking about communication between those people that are either helping you or loving on you. 

Janna: And we're also going to talk about circulation. Circulation is the goal. Keep that circulation going. 

Larry: Yeah. So, diet really isn't enough, it’s a combination. Diet, exercise, your narrative, your attitude. And there is there is an element of spirituality too that you and I share. And not everybody out there in podcast land are going to want or be interested in that. 

But it is definitely, I mean, I talked to a hospice person today. And they said that, you know, when they're in hospice, a lot of times it's pretty hard to find anybody that isn't seeking some kind of reasons for things and spirituality. And I think faith can play a big part. 

So, when we have that episode on faith, we'll tell them about it. And then they can listen in. Or if they're adamant about not wanting to talk about faith, we'll just be a separate episode. But it plays a big part in what you're doing and how you're approaching things. So yes, this is Janna, an Alzheimer driver signing off. Until next time, where you'll hear another episode of Alzheimer driver. Words from a horse's mouth.