A Million Little Cuts

As we launch this podcast, we wanted to give everyone a starting point for where Matt is at in the disease. 

Today, we will talk about events leading up to Matt's diagnosis, and the deficits he experiences on a daily basis, as well as discuss situations where Matt no longer feels as comfortable as he once did, thanks to Alzheimer's. 

We will also talk about how the concept of death is a near-daily companion in Matt’s life and to wrap things up, Matt reads an excerpt from his journal. 

Check www.oldmanlunch.org for more details on us, Alzheimer's, and the podcast.

Bluesky: @oldmanlunch.bsky.social
Instagram: @oldm.lunch

Transcript

Mark Vallet: Hello, everyone. This is Mark Vallet, Matt Allen and Brad Nilles with Old Man Lunch, a podcast about Alzheimer's and old friends. We're coming to you from our studio in Eagle, Colorado, which also serves as my dining room. In 2023, Matt was diagnosed with early onset Alzheimer's at the age of 54, and our goal is to record his progression through the disease for as long as we can, while also making some great memories and having some fun. 

This is episode number two, recorded on December 7th, 2020. 

I thought it would be a good idea to start every episode with some Alzheimer's related content. 

I would like to read a couple statistics about Alzheimer's at the beginning of each episode, as I have been truly astounded by the numbers as I've done my research. 

Alzheimer's disease was the fifth leading cause of death among individuals aged 65 and older in 2021, which is the most recent year for mortality data. Without new treatments and advancements in care, the total cost for caring for people living with Alzheimer's and other dementias is projected to reach $1 trillion in 2050, which really is only 25 years away, if you think about it. 

Mark Vallet: We want to give everyone a starting point for where Matt is at as we launch this podcast. Today, we will talk about events leading up to Matt's diagnosis, deficits he experiences on a daily basis, as well as discuss situations where Matt no longer feels as comfortable as he once did, thanks to Alzheimer's. We will also talk about how the concept of death is a near daily companion in Matt’s life and to wrap things up, Matt reads an excerpt from his journal. 

Matt Allen: For me because it's really very hard to remember a lot of things I have in front of me, the timeline of doctors and visits, which I asked my wife Laia to put in order. And so, a lot of what I know is based on this because I don't really remember. 

Mark Vallet: So you don't remember much about the diagnosis or do you remember what led up to it?  Cause I remember, I clearly remember. Do you remember in Revelstoke? 

Brad Nilles: The last time we were there, something that he forgot? 

Mark Vallet: We were at dinner, and we talked about an anal bead vending machine. For some reason it was a joke or something, and we talked about it later when we called back to the joke for some reason and Matt had no fucking idea what we were talking about. 

And I remember thinking, how do you forget that? I mean, it's a weird word. Is it a vending machine? I mean, what the fuck? And I think that was the first time, at least for me, that I thought about you were having real issues here. 

So, you don’t remember going through all this stuff for the testing and whatever you had to go through before you got the diagnosis?

Matt Allen: Not really. A little bit, but no, not much, honestly. 

Mark Vallet: So, at this point, Matt, is early onset Alzheimer's at 54 years old and he is currently in the early stages of Alzheimer's where it's mainly forgetfulness, issues with planning. 

Matt Allen: Lots of forgetfulness. 

Mark Vallet: Okay. Well, I mean, why don't you just tell us about life? So, on a daily basis, do you take care of the bills or anything like that anymore, or is that mainly done by Laia at this point?

Matt Allen: I mean, maybe if I get a bill on paper, I have a hard time navigating computer screens these days and like trying to deal with like sending in a bill pay or something like that. So, there are still some bills that come, and I write a check and put it in the envelope and send it. But most of the time these days, it's Laia. 

Mark Vallet: So, she does most of the planning, it seems like planning and that kind of stuff tends to go first. Your short term memory is not great?

Matt Allen: I mean, I'd like to think that my long term memory is better than my short term memory, but I don't really know. In the short term it's kind of like I'm constantly having to revert to my phone to recognize what comes next. For example, like my schedule at work, it's been the same thing for a very, very long time and I still have to go basically every day and look at, okay, 8 to 9, that's what that's happening and then 9 to 10. But I'll forget from the 8 to 9 what is happening in the next one. So, I have to look again, it's my short term memory is like deeply, deeply unrooted. 

Mark Vallet: So, you forget everything like, like not everything, but I mean, you forget a lot of things. 

Matt Allen: Like, I don't forget, like, who you are. 

Mark Vallet: Oh, I know that. So, we went shopping in Boulder the other day or whatever, and you forgot your, it turned out you just put it back in a different place in your wallet. But you know, you thought you forgot your credit card somewhere. That happens a lot these days.

Matt Allen: It happens all the time. Yeah, that that's like part and parcel of my every day. 

Mark Vallet: Is that frustrating? 

Matt Allen: Yeah. Yeah, it is. I mean, you know, it's kind of small in comparison to a lot of people's problems, but the truth is that, yeah it is annoying and each time it happens, it's kind of like it's a little nick, it's a little nick in the, in the flesh because it's, it's like, fuck, what the fuck is going on? Or I feel like I should be able to manage it and I can't or, or I'm more and more recognizing that I can't. Like I'm no longer in charge of my checking account. I mean, I have a checking account and it's still in my name, but I don't really write checks anymore. Laia is the person. 

Mark Vallet: The caretaker of the checking account. So in the early stages. I mean, this is really I mean, does it feel like is it more of an inconvenience or it really bothers you? 

Matt Allen: It really bothers me. I mean, it's kind of like losing your fucking ability to like, let's say you were a really good basketball player or that you really knew how to do crossword puzzles and then suddenly you can't, because it seems like it really came on sudden. I mean, the first thing that I have on my timeline is April 04, 2022. So, 2022. 

Mark Vallet: Is that when you were diagnosed? And that's when they dying to definitively diagnosed you? 

Matt Allen: No, they first gave me a diagnosis of 41.3 memory loss NOS. Which means not otherwise specified. My memory was significantly lower than predicted from intelligence scores estimated premorbid. IQ is significantly higher than current IQ score. So that was the first thing that that I ever got and that was at UC Health in Denver. And that's where I've been going, you know, since then. 

And maybe I can just read some of this because it might be helpful, but the adjustments of Matt’s working memory ability generated a contrast and scaled score in the extremely low range. 

Matt’s auditory memory is much lower than expected. 

Mark Vallet: What does that mean? 

Matt Allen: It just means that you hear it and then it automatically it's just sort of. This kind of memory automatically ties. And now it its if I hear something and like 10 minutes later or so I'll say to Laia, what time are we having dinner? And she said, I told you 10 minutes ago. 

Mark Vallet: And that's frustrating?

Matt Allen: Well, that's very frustrating for me. And I think it's also for Laia.

Mark Vallet: Yeah, I have no doubt that it’s frustrating for Laia.

Matt Allen: I mean she's, we're both kind of getting used to it from the perspective that she'll say, oh I'll come home at 4:30 and she's like, you were you supposed to be here at four? And I'm like, was I? And she says, yeah, you were supposed to be here and I am like, what am I missing? She will say, well, you had we're supposed to go out for dinner 4:30, or whatever it is. And that happens over and over and over and over again. 

Mark Vallet: That's I mean, I guess that's where we're basically trying to establish like a starting point of where we're starting from. And that's where we're at. So early onset, the early stages of it, mainly at this particular point in time, inconvenience. But do you get angry, like there are rages coming apparently from what I have read.  

Matt Allen: I haven't had any rage or depression or sadness, maybe a little bit of depression. I would say not depression. It's kind of like when I forget something or when I can't recall something, it's frustrating as hell. And when that happens over and over and over again in a day, yeah, then there's some depression that's kind of like, What the fuck, What the fuck? What the Fuck? 

Mark Vallet: But you don't get angry yet or at all. I mean, there's apparently rage that tends to come at some point. 

Matt Allen: I haven't had any rage. No, not at all. That it's kind of more of like a morose feeling of like, well, I don't feel like I'm completely in control. Like it used to be where that I knew what was happening most of the time. I don't think I know what I'm what is happening most of the time. 

Mark Vallet: Most of the time. Really? 

Matt Allen: Yeah. I mean, like you guys, I'm with I was with you tonight and we have dinner and I'm there, but I'm not. Somehow I'm also not there. 

Mark Vallet: So, I mean, you're still driving, you’re still working. Work is impacted obviously, you know, with memory and organization and that kind of stuff. But you are you're still working and you're still driving and doing most things. 

Matt Allen: For the most part as I was. Yeah, definitely. I'd say it's like maybe 85% of what I was or what I remember being. 

Mark Vallet:  Because we were talking about like the, the Global Deterioration Scale, which I think is a fantastic name, But so it says here this awareness of decreased intellectual capacity is painful for them. 

Matt Allen: Yeah. 

Mark Vallet: Henceforth the psychological defense mechanism known as denial whereby the person with Alzheimer's seeks to hide their deficit even from themselves, becomes operative. Also, the person withdraws from participation in activities such as conversations, for sure. But I mean, do you think that that's true? We're doing a fucking podcast right now. 

Matt Allen: I mean, I guess, but I feel that with withdrawal, I'm not here, not right now. 

Mark Vallet: Is this because you're more comfortable with us?

Matt Allen: Well, because I know you guys and also, like at work, I am probably 60% less participative. Yeah. Because I it's sort of like I can start talking, but I don't know where necessarily where it's going and I'm not completely sure that I can sort of follow all the way through. So, I'm way more or less participatory. 

Mark Vallet: When I read this, I was like and I wrote here, do you think this describes you at this point? I mean, we are making a fucking podcast right now is what I wrote. So, but it does. So that absolutely happens at work and with people? 

Matt Allen: Yes. We know each other very, very well. But when I'm at work, I still, I don't want to share everything that I'm that I'm not knowing because they're going to tell me to get the fuck out you know, which is what they're going to do very soon here. 

Mark Vallet: What do you mean by very soon, you think they will fire you? 

Matt Allen: No, I don't think the fire me, Coworker name, she's the she's the director actually, who I've known for the last 12 years or 14 years for a long time. But, you know, every once in a while, we have a conversation. How are you doing? How's it going? And I'm like, well, you know, I'm able to come to team meetings. I'm still able to do my basic attendance. I'm still able to do my one, I have one psychotherapy, and I still have one team supervisor role. And, you know, I'm holding it together. But there's also underneath that, a lot of anxiety that's happening all of the time. I feel anxiety about forgetting the things that I just talked about with my client. So I keep closer notes than what I used to do. I feel anxiety about the fact that tomorrow I might not remember exactly what happened, which is why I take the notes so closely.

And I and I don't have any problem with it is that I don't know what I'm going to remember or what I'm not going to remember, depending on the day. Some days I feel pretty fluid and some days I feel completely chaotic and like I can't remember what I did in the morning. I can't remember did I brush my teeth or sometimes I brush my teeth twice or feel the bristles and if it's wet, okay, then I've already brushed that kind of thing. 

Mark Vallet: The guy in the in the Forgetting podcast, he talked about, they eventually cleared out sort of the bathroom a little bit because he picked up a razor and then was going to brush his teeth with it. So yeah, eventually you might get to that. But I mean, so you do forget things like eating breakfast or anything like that. 

Matt Allen: Exactly. Or I'll, I'll be in the middle of the day and I'm like, did I eat, did I eat? And you don't know. And I don't know. I literally. 

Mark Vallet: You honestly just have no fucking idea? 

Matt Allen: I don't know. And then sometimes I can go like, maybe I'll go back into my backpack and I'm like, Oh yeah, okay. This was the half of the sandwich that I did eat. But most of the time it's kind of like, I have no fucking clue or I'll get home from work and I let's say I saw three clients that day. I've written my notes because I do it immediately after the session, but I have no memory and I try to not look at my notes, I'm like, okay, so what happened? 

It's very, very complicated. Because sometimes I remember things very well and sometimes, sometimes I don't. It comes and goes. It's sort of like, I don't know what I don't know what kind of a metaphor to make. But sometimes I have a whole day where I kind of get it all completely clear. And then the next day or two days later or three days later, like I get home and I'm and I'm trying to do my notes and I'm like, I have no fucking clue. Okay. I know I saw this person. We talked a little bit about this maybe, and we talked a little bit about that maybe. But there's nothing. There's like, nothing. It's like a, it's like a terminal ground. It's gone. 

Mark Vallet: And you can't go back, like sometimeI forget things and I'll try to think about what I was doing, you know, and then sort of go backwards through my day or, you know, whatever. Until you get to that point, you can't do that all. 

Matt Allen: No. It's like it's like somebody put an eraser in my head. It's just and I keep trying and I keep trying and I might get a little squeeze of juice and then it's gone, like gone. Nothing. And then maybe two days later, I will remember what that was. 

Mark Vallet: Oh, really? So sometimes it just comes back later? 

Matt Allen: It's like, Oh, right. That's okay. I saw him and we did this, and we talked about this and etc. But I've already written my note.

Brad Nilles:  Does it help recall things by reading your notes?

Matt Allen: Kind of, but not really. Really. I mean, I can I yeah, if I, if I read a note that I have written two days before or whatever, then sure, I kind of remember and I try to actually look at my notes before I go see the client so that I'm remembering what we talked about last time so that there's some continuity. Right. But sometimes I forget to do that. 

Mark Vallet: I think you're going to be free for skiing all week pretty soon. 

Mark Vallet: You obviously are giving some thought to death and life and on a daily, or  regular basis?. 

Matt Allen: Pretty regular, but I think pretty daily. I mean, not like, oh my God, am I going to die today? But just more. It's in my mind. 

Mark Vallet:  I know, I mean like the philosophical implications of death, we've talked about it and the tiny house thing and now, you know, it's a recurring theme that seems to be running through all this, which, I mean, I totally understand why and it's also given me some perspective on things.  You know, some of the things you said in the tiny house. I thought about those quite a bit as well. But I mean, I don't know, do you find it difficult to think about this stuff on a daily basis? 

Matt Allen: Yes and no. I don't think I think I think I'm always thinking. But it's just always sort of in the back here. It's always somewhere in the back of my mind. And, you know, it comes up pretty often, even in my work. You know, I have team meetings every day in some capacity and I'm meeting with clients and I'm always forgetting something here or there. 

You know, it's maybe not the most important things. I'm not like dropping the ball in in a big way, but I am reminded every single day that my mind is not the way that it used to be, because I used to have a pretty strong memory and grasp of what's going next. I didn't have to look to my computer or to my phone to tell me what was going to happen next. yeah, it's I mean that and that's not like totally destructive to me.

It doesn't like I'm like I don't get really deeply depressed about it, but it's like a million little cuts all the time. Like, I forgot this and then I forgot this and then I forgot that.

I mean, even here, since I've been here, there's been a couple of times where I go up and down the stairs because I have no fucking clue what I was looking for and then realize what I was looking for. And then I go upstairs again and then I realize it was down here, you know, that kind of thing. Yeah. So. And that's not such a big deal in the big room, but it's like the anxiety comes because it's like, Fuck, I just had it, you know, Where's my phone? God dammit, what do I do with my computer? Did I leave it downstairs? I mean, you guys don't see it. I mean, you probably do see some of it, but I probably went up and down three or four times looking for something already today. 

Mark Vallet: I do that sometimes, I'll come downstairs and then I'll forget what the fuck I was going downstairs for but if it happens constantly I am sure that is frustrating.

Matt Allen: It is. It's deeply frustrating. I mean, I'm learning how to navigate it where I'm just like, I well, it's not like I'm not looking for the detonator for the nuclear bomb, you know, I'm just looking for my fucking phone. I'll find it. I'm sure it'll find. But, you know, there's still this, like frustration.

Mark Vallet: Oh, I'm sure it's got to be. I'm sorry. 

Matt Allen: So I would say, just like generally being outside, I feel much, much better than if I'm inside, like inside of a building or inside work, etc.. So there's a like a claustrophobia or a sense of anxiety in close quarters. 

And like where I work, we have a pretty fucking small office building and, and most of the office rooms are also very small. And a lot of times we're packed in like with ten or 11 people in the same space and it's kind of oh, I'm like, I start vibrating and, and kind of like I think I talk way less than what I used to or kind of participate because I'm just trying to hold it together to be there because it's too much energy. There's just too much energy from too many people sitting in the same room so that happens.

Mark Vallet: So it's mainly people like in a situation where you might have to talk or like interact with people, for example, this doesn't bother you much. This podcast is just the three of us. 

Matt Allen: It's the three of us, and I've known you guys for a long time, so it's different from that perspective. I mean, I would still say that when I'm alone or when I'm with Lucy, because most of the time if I'm alone, I am with Lucy. That's my calmest space because there's nothing there's nothing that that I have to do. There's nothing that I have to say. 

Mark Vallet: Yeah, you don't have to think about them remembering things exactly. Interacting with people, right? 

Matt Allen: So that's kind of the safest space. And then probably the next place, safest spaces with Laia, obviously, and with my kids. But, you know, Lucy doesn't talk. So when we're together, I just feel completely calm. Sometimes I get anxious, even if Laia is kind of like running around the house, getting ready to go out of the house. The energy also penetrates. Like I still feel that. 

Or if Naia is having a hard time with something, obviously. So, I guess the long and the short of it is that it's almost like I have to gauge my distance with people these days because I just start to get deeply anxious and less so is my family more so like when I go to work, the anxious anxiety level probably goes up at least two times. And then if I'm in a really busy situation like let's say we go to a football game or to a concert and there's like just a lot of people, I am like thrumming, like almost like I can barely hold it or stay with it.

 And I remember talking with one of the doctors at UC Health and I was kind of sharing what I'm seeing right now. And he said, Yeah, well, that's I mean, you're permeable, you're much more permeable with this disease from the perspective that, know, before you felt like I kind of had my own shell. And now the shell is like very, very, very thin. 

Mark Vallet: You still go to concerts, right? Or not?

Matt Allen: I don't go as much. And it's usually like I don't mind going to outside concerts but like going into a stadium or something like that. I, I don't know. I haven't done that, and I don't think I've done that since I got a diagnosis. I haven't gone to a concert inside of a place. Again, the thrum is just too much. I feel like I'm going to blow up. 

Mark Vallet: Well that would be weird.

Mark Vallet: At this point. Matt reads the last entry in his journal, which was written a few days ago, and we discuss the fact that he is withdrawing from social situations in many cases. Okay, let's do the last one and then we'll probably wrap this up and go skiing. 

Matt Allen: Sounds like a fine idea. 

So, the last one was 12/06/2024, just a couple of days ago. Here is a link to our blog where I have also posted this journal entry. 

What to say and how to say it…How to grok the day to day when most things slip past me like quicksilver. How to simultaneously hold on and to let go? My dreams of late have been populated by an uncanny and discordant frenzy that I am not able to remember upon waking- which really pisses me off. I have insights in those rambling stories of the night, but they leave me upon waking- left with just scraps and tatters to try and piece together- and I do believe the Donezipil, the medication I take daily, is the culprit. What really upsets me is that I know in these dreams I have awakenings and insights into the deep mysteries of the world and universe, but they are torn to shreds each night and thrown up in the air by morning.

Another thing I have noticed recently is that I am withdrawing from social situations- as being with too many people makes me anxious and I find myself at parties or in groups wanting nothing more than to go back home and sit on the couch with Lucy to help my system regulate.  This is clearly a big shift as I have always been super social and engaged, and I still make efforts to show up when invited but it now takes serious hutzpah and a good deal of nerves to arrive.

Mark Vallet: Does that frustrate you though? I mean, do you miss that, I'm an introvert, like, I don't really like fucking people you know, but you're not really like that.

Matt Allen: Yeah, I’m extroverted, but I'm turning into an introvert. 

Mark Vallet: Does that bother you? Like, does that frustrates you or make you wish that you could be more extroverted. 

Matt Allen: Yeah, I mean, it's kind of like I'm I'm tied in both ends because, yes, I want I wish that I could still go in the way that I could and have the same kind of an experience. But it's now laden with anxiety. So it's yeah. So I will go and I usually these days, if I go, you know, like I still go to my poker group in a regular way, I don't feel a whole lot of anxiety there. 

Mark Vallet: It's good to say that's been going on for a long time, right? The poker group?

Matt Allen: Yeah. I mean, that's kind of like being around the home hearth. Yeah. And a lot of times these days we're hosting at my house too, for that reason. So that's still, you know, I don't get anxious about well, I still get a little anxious before they come over. Just kind of making sure that we've got the food and I know where the cards are and all of that kind of stuff. But for the most part, when I'm in groups and that's what I, you know, when I when I go to work, when I'm in a team meeting, there's usually six or eight people there that's an average size. 

And when we have our all staff meetings, there's 46 or 48 people. That's how many employees are there. And it used to be that I ran those meetings and now it's just hard even to be there because the it's like there's a throng of human heat and energy. And my system used to be able to kind of like just block that into my own forehead. But now it kind of breaks through and I feel I feel the anxiety of others. I feel the anxiety of a room and it just penetrates and it sometimes of, you know, in an all staff meeting, I'll get up and go to the bathroom like four times. 

Yeah. I mean, if I was more of a smoker that I would be going to, you know, I'd be going out of the building to smoke and then coming back and to people. 

Brad Nilles: Are you glad that you did the things that you're anxious about after you did them? 

Matt Allen: Like, I'm glad I went to that sometimes. I mean, sometimes I Yeah, I mean, a lot of times it's kind of like I got to get over the hurdle and then there's a, there's a time where sort of things settle after the initial kind of again, there's a thrum and an energy when there's a group of people, when there's a large group of people or, you know, anywhere over three or four people, I start to throw in and I feel it. 

There's this sense of even though even if there are people that I really know well, because I can't follow, you know, like if there's six people in there all talking back and I can't follow it, like I lose the thread of where. And so then I sort of just kind of go in and I'm way more quiet. Yeah. And people notice that, you know, in my poker group and etc., they're, you know, they're very honest and like, yeah, yeah, you're, you're definitely different. You don't talk as much about. 

Mark Vallet: Well, how many people are in the poker group?

Matt Allen: When it's, when it's full there's maybe nine and these days it's more like six or something like that. And my and, you know, my navigational point there is I just get drunk enough to and then all of my anxiety is basically gone. I mean, that's what a lot of people do in social situations. 

Mark Vallet: Yeah, that's me. 

Matt Allen: I mean, with my poker group, there's always a bunch of beer and whatever. And so I'll have three or four beers and then I'm not worried about anything. And I think I said this, but since I've gotten the diagnosis, I have won at poker over and over and over again. 

Mark Vallet: Yeah, well, that's fantastic. I don't know why, did you suddenly get better at poker?

Matt Allen: No, I think I have no idea. But we laugh about it because it's like, you know, the the reigning disabled poker champ. 

Mark Vallet: Do you get anxious, if you are going to something with new people you don't really know? Like, do you ever go out to dinner? Like, go to dinner with somebody you don't really know very well? 

Matt Allen: And that's totally I mean, that that's always been kind of anxiety producing for everybody in some way. 

Mark Vallet: But is it worse than it used to be? 

Matt Allen: I would say so, yeah. It's probably like it used to be a four and now it's a seven, something like that. You know that it's been turned up and yeah, I have to kind of like prepare myself if we're going to go out for dinner with friends and even with friends that are very close, you know, and then if it's somebody that like we're going to a work party that that my wife is hosting because of her work and then, you know, and there's like 28 people there, like I, I think the last time I did that was a year ago. I just don't do those things anymore. 

Mark Vallet: So, you're talking about like her work party where you don't really know a lot of people? I hate that I had to do that once with Sarah. 

Matt Allen: I mean, that's just generally how most people would feel about that. But I'm just gonna go, I have to go. 

Mark Vallet: The answer's no to spouses work parties as far as I'm concerned. 

Matt Allen: And the good news is, like, I just she left the organization that she was running, and so and she's just got a private practice now. 

Mark Vallet: And so, her so her party is going to be pretty small. I mean, if you're in private practice, do you get your patients together for a party? Because that seems like a no. 

Matt Allen: Yeah, that's right. But at my work we do have a Christmas party for all staff and all the clients simultaneously, but there's no alcohol there, you know. 

Mark Vallet: That seems like a fair. 

Mark Vallet: Well, that is it. For the second episode of Old Man Lunch. In our third episode, we'll talk about activities, people, animals and other things that make Matt feel better about his diagnosis and help him deal with the anxiety he is experiencing. We also read a number of journal entries, a feature that we may be adding to each episode. 

Keep listening. We will get better at the audio and organization, I promise. Follow us. Write a review and tell your friends, we will be back in the New Year and heading to Moab with some old friends from Dubuque, so be prepared. Happy holidays from everyone at Old Man Lunch. 

Matt: Allen: Hello, everybody. Welcome to our podcast for Old Man Lunch. My name is Matthew Joseph Monkey Allen.