Living With Dementia: Real Stories, Early Signs, and Getting the Right Diagnosis

Welcome Back To Detroit

SPEAKER_09 0:00

What's up, people? We are back in Detroit and we are giving you even more. What are we doing this time? Living with dementia. Yeah, there are people who are actually living with dementia. And they're living a lot fuller life than we most people give them credit for. So anyway, get ready to be mesmerized and encouraged by what it's like to be diagnosed and then still tackle the world four-fourths and foes down. Because having dementia don't mean death. Parenting up, caregiving adventures with comedian day smile. It's the intense journey of unexpectedness, being fully responsible for my mama. For over a decade, I've been chipping away at the unknown, advocating for her, and pushing all time of awareness on anyone in any team with a heartbeat. Caregiver nobody, ODs, and village members just willing to pop up with Caregivers.

SPEAKER_07 1:16

I hope you enjoy my daughter's podcast. Okay.

Why Diagnosis Matters

SPEAKER_09 1:29

Today's supporter shout out is from Facebook. Brandy Moore. I'm about to go to sleep, right? I knew these naps were important. Love you, parenting up. Now she was referencing our episode about getting sleep is actually self-care. Me too, Brandy. I'm about to go take a nap. No, I'm sorry. All right. I'm gonna take a nap as soon as I get finished recording this stuff. If you want to receive a support or shout out, leave a review or comment on Apple Podcasts or YouTube. We're parenting up everywhere. Today's episode, Living with Dementia. We're back in Detroit. You know how we do. Detroit is full of people that support and care about dementia. Let me tell you what's so exciting about today. We're getting to discuss what it's like to live with dementia. People who have actually been diagnosed. But if she hadn't been diagnosed, then she can't sit on this couch today. This is for people who have actually had the courage to go and get the medical diagnosis. Hey, how y'all doing? Now the little joke that we started before is it's the dick, a Jerry, and a John. They all walk into a bar. No. Well, that could be true. Dick, Jerry, and John. The two on the ends are currently

Dick And Jerry Notice The Signs

SPEAKER_09 3:07

diagnosed and being treated for their dementia. This is going to be so enlightening. Thank you for agreeing to tell your story.

SPEAKER_01 3:16

Welcome. Glad to.

SPEAKER_09 3:17

I don't care who wants to go first. Oh, I'll go.

SPEAKER_01 3:20

I'm closing here.

SPEAKER_09 3:23

So let us know what made you say, or anyone in your family, I I think some's not quite right. I I need to go to the doctor, get a test.

SPEAKER_01 3:38

Well, my wife sitting next to me is the one that uh uh uh helped bring that together. And I had a uh uh a regular six-month checkups uh planned with my doctor that I've had for a uh for a good long time, uh a Dr. Madden's here in the Detroit area. And uh we just uh decided we were we we agreed to go together and talk to him about uh uh my memory uh loss at times and forgetting uh or re actually repeating myself was one of the uh the major things that had come up. Initially, I thought uh that it was from uh the uh when when COVID was around uh uh a year and a half or two years before that, uh, that it was just kind of a uh a hang-on, you know, carry-on from uh uh from the COVID. Um and uh come to find out that that's not the case. That wasn't the case either. That was not at all.

SPEAKER_09 4:40

How did that go for you, Jerry?

SPEAKER_08 4:42

Well, uh uh Dick was repeating himself a lot, and I would mention it or talk about it, and I I think you got a little defensive about it. And and our adult children started noticing it, and two are out of state, and we we went to visit them, it was, I would think, more pronounced for Dick. He repeated it himself, and it could have been partly the stress of being in a new situation or different. So once I told him the kids were very involved, then he absolutely agreed to go to the doctor and talk about it.

SPEAKER_09 5:20

One moment. Good for you. Oh I wanted, I I don't have but one hand, I gotta hold his iPad. But yeah, good for you for agreeing. Absolutely. Or at least just not fighting, right? Sometimes you're not necessarily agreeing, but the fact that you didn't fight, and and I heard when you say when the kids got involved. Right. I I often hear if the kids or grandkids if if they ask, often it is received with a a little uh less hesitation.

SPEAKER_08 5:48

Absolutely. Yeah, yeah, yeah.

SPEAKER_09 5:49

Okay, okay.

SPEAKER_08 5:50

So the doctor was and Dick when Dick mentioned COVID to him, he said, oh no, not this far down the line. So he got the ball rolling, and it it's been a wonderful ball rolling. It's been a good experience.

SPEAKER_09 6:04

When was the diagnosis, if you don't mind me asking?

SPEAKER_08 6:08

January. January of 2025. So it's been about a year and a half.

SPEAKER_09 6:13

Okay. This is really fresh. Like you were you're you're a dementia uh newborn. You didn't think about that, did you? I've never turned it the way. I'll I'll tell my kids that. Yeah, yeah. So give them all the bills. Like, hey, I'm a newborn now. You need to take care of all these bills.

John’s Symptoms And Testing

SPEAKER_09 6:32

John, you are currently living with dementia.

SPEAKER_04 6:36

I am indeed. Well, uh, my uh issues um that kind of brought on the uh inquiries to doctors, uh memory, uh mostly uh people and things. Um also speech. Um I did a lot of um and om and om and om and om. And uh so um my wife um through 2024 we were having a lot of arguments, and um the arguments were uh lack of clarity from my uh speech, um me forgetting things, um, me asking a lot of questions because like who's that? Where are we going? Um that sort of thing. And uh that really started late 2023. Um and then it went all the way through 2024. 2025 I had a back surgery, so I was out. Uh I was out of it. Um, but by uh January of this year, um it was time to go see a uh well to see my uh primary care, and uh she got me into a wonderful neurologist, and uh uh we um we did a lot of testing. Okay. A lot of testing. Um all the imaging, uh, the blood tests, uh other tests, you know, various and sundry uh um neurology tests that showed uh yes. Uh I I indeed have um uh early stage dementia.

SPEAKER_09 8:34

Was it difficult to go to the doctor or um well was it difficult?

SPEAKER_04 8:41

Yes. Okay was did I agree? Just like Dick, it was one of those things that um I don't have a very good perspective on this. I agreed that I don't have a very good perspective on this, and I said, you know, what can uh A, what can I hurt? And B, um you know, I knew that something was up. My daughter knew that something was up. Uh and my wife was the one who said, we gotta do something. And I said, okay.

SPEAKER_09 9:16

When you said you knew something was up, can you what does that mean to you? Was it we'll internally let you know, hey, you know, something's not quite right.

SPEAKER_04 9:28

Well I was just moving on through life.

unknown 9:32

Yeah.

SPEAKER_09 9:32

So you're like, I'm having a great time.

SPEAKER_04 9:35

Well, I know about a great time, but I am, you know, I w I was definitely uh didn't think I was that bad yet. Okay. Um, but um I was. And um my wife began uh once we got the diagnosis, it became very clear, looking back for me, um holy smokes, uh uh this started more than a year ago. And uh and then my daughter uh I went and visited her, and uh I'm a handy guy, and one of the things that I do is uh when I go down there, I fix stuff. Okay. Um and my daughter noticed that I wasn't uh uh handling tools well, um getting confused going here, going there, that sort of thing, rather than my usual rather methodical way of of of doing stuff.

SPEAKER_09 10:36

Did you notice having difficulty with the tools?

SPEAKER_04 10:38

No. Okay. Um I suffer from anxiety, okay. Uh and that is diagnosed as well. And um it was a day in the life for for me in that. You know. I've got uh um a number of uh diseases that are trying to do me in.

SPEAKER_09 11:02

And so um And they don't go together so well, sounds like Well, uh I can talk about this, I don't mind.

SPEAKER_04 11:10

Um uh I'm I'm a recovery alcoholic. Okay. I have been sober for uh twenty four years this year. So uh there's that. And I've been diagnosed as being bipolar.

SPEAKER_05 11:24

Okay.

SPEAKER_04 11:24

And uh that has its own issues.

SPEAKER_05 11:28

I can only imagine.

SPEAKER_04 11:29

I mean, you know, uh between the uh uh depression and uh and and it's like I say, it just uh they do come together uh uh uh and create issues uh between, you know, with my life and between my wife and I. So yes.

SPEAKER_09 11:48

Thank you so much for sharing that. Uh one as a as a person who's never been married, I found myself, and being a comedian, being a comedian, I found myself wondering, like, how many men are going to see this conversation and say, well, baby, the reason why I've been fighting and fussing and arguing with you all this time is I think is it's my memory, right? That's why I'm fussing and fighting with you. Because I I know my grandfather probably, that might have led to a lot of the arguments he was having with my grandmother, but we didn't know it. We didn't know it at that time. We did not know it at that time. So I'm so grateful. Again, I I can't say it enough just that you all are willing to share and let people see this is what dementia looks like, right? It's there it starts off at a stage where people are functioning. You all are functioning very well. Sitting here, there's nothing about you that says, ah,

Telling Family And Dropping Secrets

SPEAKER_09 12:44

look at those two guys with dementia. There's no dementia on you, and you don't see it, and you're not behaving. You walked in here, you're talking to me. Um tell me, uh, the two of you who have been diagnosed, please, what are some of the things that happen since your diagnosis that you're happy that I like, you know what? I'm so happy that I know that I have this disease because now this makes sense. So now I know what medicine to take.

SPEAKER_01 13:15

Well, um one of the things is uh as I don't know if I mentioned, but my my mom and my uncle had dementia. So it helped me to think back in terms of their journey and to see how it impacted them over time. So I had that kind of uh piece, and uh and so I said, you know what, um if uh if I I wanted to let all the family know. So we made it a point of uh um both, you know, not only the kids, but all um my my um brothers and sisters and my uh relatives too in the in the family who are spread out all over the country. So we just both decided uh we're we're gonna tell them, we're gonna tell them all, as well as our friends, as well as Jerry's family, so that uh we kind of cast a wide net. Yes. And uh uh so that was really uh uh and that was very freeing for me. So we're not you know, we're we weren't keeping things from from each other. And um and a number of them are now uh in treatment and or getting tested.

SPEAKER_09 14:32

Yes. So that that you've actually been an advocate for testing and treatment and it's now benefiting some of your family. That's amazing.

SPEAKER_08 14:44

Especially with early diagnosis. Yes. We were so fortunate that Dick was diagnosed very early on. Okay. Okay.

SPEAKER_09 14:54

We'll get right back to that. I know about the the early the difference in early diagnosis. So, John, from the time you were diagnosed, has there been anything that's where you could say that was particularly helpful? Like, okay, now that I know this.

SPEAKER_04 15:09

Well, uh I'm a science guy, and um it was uh uh very interesting to see the uh scans and the reports from them. Um I knew an awful lot about it, and I searched even more about it. And so uh they say this sort of thing can happen and that sort of thing can happen, and I can point to that and say, yeah, that can happen. Um yeah, that does happen. Um so it's it's not like uh this came out of the blue and I made it up. Right. Uh it's out there. Yes, and uh it's being uh researched and uh they're coming to conclusions. But the things uh um I also, as Dick uh mentioned, uh my family knows, my wife's family knows that I am uh early stage dementia. And um uh the secrets are not good. You know, uh they're not. Uh it uh it um uh it keeps me from being uh open. I mean it it closes down a lot of things. And and so um and so um uh I end up um This is the speech thing happening. No problem. Um not having the secrets is is uh uh freeing for me. Yes. And um I have, I mean, on a weekly basis due to the meetings I go to and that sort of thing. I see three hundred people.

SPEAKER_09 16:53

Wow.

SPEAKER_04 16:54

And out of those three hundred people, I know a hundred of them. And uh anybody that I know well enough knows that's my diagnosis. And you know, it's one of those things that uh uh it was important to me that they know when I don't know I mean I've known these people for over 20 years, some of them. And uh if I don't know their name, which happens, someone I've known for 20 years sits down next to me. Hi, John. Um I can't say hi, I can say hi, but I can't say hi, your name. Um and uh um you know uh that's hard. Yes, that's real hard.

SPEAKER_09 17:41

That's hard. But now that you you've had you had the courage, to me, it's courageous to share that you have been, you got this diagnosis, and then now the people who are around you will understand prayerfully why you may not say their name and they may not be so off-putting or awkward for them. What registered for me and what you both just shared is you used the word freeing, that actually letting people that you know and love or family members be aware was really freeing. And I think that's a powerful story for us to share with the community that this, you know, it it it's the world. We have family secrets. This is not a thing that should be a secret.

Infusion Treatment And Travel Plans

SPEAKER_09 18:31

Um, another thing that's not a secret is uh both of you gentlemen are currently in some form of Alzheimer's treatment. I believe you are doing the infusions. Yes. Can you share with us about that? Because some people are scared of that. Oh they're so afraid of like, what is that? What are you putting in my body?

SPEAKER_08 18:49

Can I backtrack just a minute for just a second? I just want to say that Dick initially said, Well, there's nothing to be ashamed of about this. And even now, some people will come and talk to me and ask, oh, how's Dick doing? Almost secretively. Yes. And I will immediately try to say, uh, here's Dick. Let's ask him. Because people still have that feeling that, well, I don't want to offend him or I don't want to hurt his feelings. And that's not an issue. It's certainly for Dick, and it sounds like for you too, John. It's okay. We can talk about this right in the open. And it's better. It's a good thing. Oh, absolutely. So back to the treatment. Thank you for that.

SPEAKER_01 19:33

Um Well, f when uh uh I really trust my primary care doctor one. It's a big deal. Yeah, and Jared was with me too. So we we both agreed, and he right away recommended um, and if I can say the Mind Clinic here in Metro Detroit, uh, and specifically Dr. Fellows, who was a lead uh neurologist there at that clinic. So that was great because I trust Dr. Maddens. So uh we we went there to that that clinic and uh had very thorough, very thorough testing, and uh uh they kept us informed all the way. Uh it was not uh we well we we know, and you weren't we're not telling you. They told us, they told us the whole story and stuff. So uh there was even how one of the scans that was done had a certain uh thing on my my brain that just uh the doctor had never seen anything like that. So he uh sent me to uh a neurologist at uh um Beaumont uh Corwell Health System, and then he referred me to University of Michigan, had the best um uh uh uh diagnostic and tools uh available. Uh so they did a PET scan, and uh so then the uh I picked up the stuff from the on the PET scan information, I hand-carried it over to the doctor at Beaumont, and uh Jared and I were there to see him, and and he um came out and said, you know, this is nothing.

SPEAKER_08 21:19

Really? Yes, but there were there was the one spot where they were the one about change.

SPEAKER_01 21:25

That was all they were were were looking at because uh Dr. Fellows wanted to make sure that there was not another Something else going on. So he said, I'll I'll tell Dr. Fellows, you you probably had that um piece on your your brain since you were born.

SPEAKER_08 21:42

And that wasn't a part of the No, and they were concerned that he may not have been a candidate for the treatment if this were something bigger or or an issue. So that's why that was important. Yeah, okay.

SPEAKER_01 21:56

Yeah, that was it w it was very much but he he said, you know, you you Had that for birth, so I don't think we can we can count that. We can count that up.

SPEAKER_09 22:04

We can cross that off and still do the treatment, right?

SPEAKER_01 22:06

So yeah, so that was a very freeing thing. First off, that the doctors communicated with each other. Yes. And that they were very open in terms of the feedback, and they trusted each other's expertise. So that that was a really uh uh a good part to see. I I appreciated uh that. And so then from from there we began to take a look in terms of what kind of uh the the medication options. So the treatment. The treatment.

SPEAKER_09 22:36

These big infusion treatments, you know, if you let the internet say it, you know, they're putting aliens in your body. Yes. What can you describe what is it? It is it a needle, you're sitting in a machine, you drink a liquid.

SPEAKER_01 22:51

Okay, the uh uh the infusion is um uh put into your uh a vein in your hand. Now you can look there and you cannot see. I don't see anything that I've had had uh 18 of them. 18 of them. All right, you say so.

SPEAKER_09 23:07

I don't see anything.

SPEAKER_01 23:08

There's nothing. And and I look at it and I look, you know, 10 minutes after I've had it, I say, where did they have it? So anyway, the the expertise that the uh uh that that the clinical staff have in doing the infusion was very very comforting. They have a set routine and they follow it, uh, but they do it in a very positive, uh supportive uh kind of way. Uh so that that that really is a plus. Now, there's a choice of two medications currently, uh infusions. Okay. Um uh and I chose uh Kasunla because it's only once a month. And we like to travel. So I said I said we can travel, we can spend our three and four week vacations or travel in between infusions.

SPEAKER_09 24:04

So that's you hear this? There's life with dementia. Exactly. There's life with dementia. This is so freeing. Okay, I'm gonna use, I'm gonna use the the group word, this is so freeing to hear and for the community to know, it is not because for so many people they uh kind of viewed it as almost an immediate death diagnosis. And the earlier you acknowledge the symptoms, get diagnosed, possibly you are able to have some treatments, and then you be traveling in between. How how have your treatments

Daily Systems That Keep Life Moving

SPEAKER_09 24:40

gone, John?

SPEAKER_04 24:40

I um am not being treated at all.

SPEAKER_09 24:45

Okay.

SPEAKER_04 24:45

Um the main reason being is I have no signs of dementia. I mean, I'm sorry, Alzheimer's. Ah I don't have the plaques, I don't have the tau tangles. Um the question is, what do I have?

SPEAKER_09 25:04

That's a good question.

SPEAKER_04 25:05

And that's a good question. And my neurologist, um I know she's working very hard, um, meaning she's trying to find out what this is, and through um a couple of scans that I had, they can point to two things that show, well, that's why, and that's why in terms of you know what the brain looks like. Uh and at this time, there are no treatments for it. Um, which is a um uh a nerve uh communication uh uh substance, you know, between uh nerves, that um is not something that's going to work for me. And the infusion, because I don't have Alzheimer's, nor the plaques, um will not work for me. That's right. Um and so uh it's a little frustrating um in that you know I'm I'm hanging here, so to speak. I kind of feel that way.

SPEAKER_09 26:15

Yeah.

SPEAKER_04 26:16

Um you know, where's the action?

SPEAKER_09 26:18

Right. You you guys are still digging and searching.

SPEAKER_04 26:21

Well, the action is uh a do something, meaning keep moving. Um uh I just took a very long, uh nice trip. I gr I uh retired in 2020, and due to help things in it, I finally got to take my retirement trip uh this year.

SPEAKER_09 26:39

And uh Congratulations! Yeah, yeah.

SPEAKER_04 26:43

And so uh um, you know, uh six years later. And and but it was a wonderful time. And um and I'm glad I was able to A enjoy it and B be with my wife uh uh to be able to enjoy it. Um so it's a little frustrating for me. Uh I sure would like to know uh if there's anything that can be done beyond what it is that I'm doing. I mean, I I like I say I the the the main objective is um being social. Yes. And and secondly, um I have uh some appointments upcoming uh dealing with my speech. Okay. Um working with a speech pathologist and uh trying to iron that out a little bit. Um it's frustrating to me. Uh it's frustrating for my wife, it's frustrating for the people that uh, you know, that know me that this um speech thing um isn't, you know, uh it's difficult to communicate. Let's put it that way.

SPEAKER_09 27:58

Right. I am it's it's promising to hear that your your doctor is continuing to investigate and try to determine like where within the dementia tree, so to speak, um your symptoms may align. And as we kind of prepare to uh wrap up this conversation, something that I really would appreciate you all sharing uh with everyone is what is a and a thing or two that has changed about your daily life.

SPEAKER_01 28:34

I I can't think of anything that I don't do right now. Um I um That's what I was hoping for. Okay. Well, I I still uh uh struggle with with meet uh new names um and remembering them. And and actually I thought about it. I uh I was an administrator uh in mental health area, and I would go to meetings and we would you know meet new 12 new people at the uh at the table and and uh but when we were going to be meeting regularly, and so I would go back and I would write each of the names down because I couldn't remember, you know, there was Charlie and Sam and Bill and Mary, and um so I would do that because I just didn't have a a photographic type of of memory. So I I I still do some some struggling with that in terms of remembering people's names. And uh and then I've uh uh so I've read a lot in terms of memory things that you can do, and and many of them are helpful.

SPEAKER_08 29:36

As a comedian, you might have fun with this because Dick is writing everything down, which is helping him. But we share a calendar on our phone. He's got every detail like calls so and so, and I thought, I don't really need to know that.

SPEAKER_09 29:53

So you're getting alerts and dings and exactly and notifications.

SPEAKER_08 29:59

But other than that, that's good.

SPEAKER_01 30:02

But she knows what I'm up to then.

SPEAKER_08 30:04

I don't want to know all of what you're like.

SPEAKER_09 30:06

Um, don't tell me everything. What do you mean to know that? Uh John?

SPEAKER_04 30:11

Um speaking of calendars, is we put a whiteboard on the wall. Okay. Um she has her activities, I have my activities, we have our activities. And um I was very often, what are we doing today? Um, did I tell you? Oh, did I tell you? Oh, did I tell you? And um and she says, yes, this is the fifth time. And so um I don't have to do that. I can walk over to her whiteboard with the calendar on and says, Oh, she's going out to lunch with a friend. Okay, great. Um that means I know that you know, I don't have to ask her, I don't have to bother her, right? Meaning, you know, interrupt her day uh for uh a question that can be answered by looking at the board. Yes. And and uh you know, I'm still uh driving, but one of the things we did was uh and I agreed to it, and I'm gonna be the first person that says uh you know, here's here's the keys. Okay. You know, when I can't do that anymore. I have no issue with that. Uh but anyway, um I I still drive, but we cut my radius down to about 10 miles. Okay. You know, uh that way um, you know, if I get in trouble, uh I'm I'm close enough.

SPEAKER_09 31:41

Close enough to home, right? Yeah. They see your driver's license and they know kind of how to get you back to a safe space.

SPEAKER_04 31:47

And I um so and I I've just tried to organize my life uh, you know, in certain ways. And I make I do make a lot of lists. Like I went camping with my son last week and uh had a wonderful time, but the lists uh to put you know, what I gotta bring and and that sort of thing was extensive. And uh uh cooking. Um I do cook reasonably often, and um I have to set everything on the counter as I'm going, you know, look at the recipe, whatever, or what I recall, put it on the counter in order so that uh it doesn't A get forgotten to put in or or or or B it turns out right. You know. That it is something that we can eat.

SPEAKER_09 32:41

Yeah, yeah. That wouldn't be a bad idea for me to do either, just to put all the ingredients on the counter in order so that the recipe has a better chance of coming out right. So the what what what I'm taking away from that is it seems like both of you in your homes have put together new systems, new systems of organization or of patterns that will help you and your family members um kind of manage this thing. And that's it, uh that's that's amazing how uh self-reliant and how much initiative that shows. Everything you all have described really, in my opinion, rips the cover off of the myth or the fear or the darkness of what dementia, what is it, if I have it, what's gonna happen to me. So I think you all are out here um changing lives with the just the way you are attacking it, choosing how to live with it, and then choosing how to share it. So I really want to thank you all for coming on the Parenting Up uh podcast and giving us such intimate and real looks into what it's like to be living with dementia. Thank you so much. Thank you for having us. Thank you so very much to my comedic trio of cast members, Dick, Jerry, and John. Like, really, there's so much material in there for jokes. I really appreciated having them in studio and talking about living with dementia.

Dementia Minds Panel Joins Virtually

SPEAKER_09 34:24

Now, get ready. We're about to have some conversations with uh members of the National Council of Dementia Minds. Yes, there are people living with dementia that are about to get on a computer virtually and talk to me about it. Y'all, dementia don't mean death. Hello, hello, hello, how's everybody doing? We are back in Detroit. Well, kinda. With some people in Michigan, there's some people in Georgia. The point is, we have gathered today to continue talking about living with dementia. And we got some people who really wanted to share their stories. They were in other locations, but we made it happen through the power of technology. How is everyone doing?

SPEAKER_02 35:11

Doing well.

SPEAKER_09 35:13

We are doing good. Good. Fantastic. Thank you so much. So you all are a part of a group called Dementia Minds, and it is a national group where it was founded by and supported by people who are actually living with dementia. And some of you are also care partners. You so you're talking about having a full plate that is amazing and that is tremendous. But let's really get into what it was like to first even find out that you had dementia. What was it maybe that um was happening around your house or at work? Was it a family member, friend, or did you yourself say, hey, something's not quite right, so I'm gonna go to the doctor?

SPEAKER_03 36:00

Well, um, for me, I noticed changes uh primarily at work. Um

Early Clues At Work And Home

SPEAKER_03 36:09

with um oh, what do we want to say? Executive functioning uh was greatly impacted. I I wasn't focusing, I wasn't able to plan, and then I lost my ability to do mental math. Um and that was a real real um, you know, math hasn't been difficult for me. So that was a big change. And then uh depression and anxiety, apathy creeped in. Uh I noticed that I had uh a tremor and uh was really struggling to find my words and it really became so problematic that I couldn't really formulate a sentence. And then I think the real key that got everybody's attention was, you know, I had been acting out my dreams and having very vivid dreams, but then I um I slugged my then husband uh in the chest really pretty good three times, right? Smack in the chest. And that really that got everybody's attention.

SPEAKER_09 37:30

Whoa! That got my attention now, and it didn't just happen. You're just recounting the story.

SPEAKER_03 37:38

Well, we we know that REM sleep disorder is a precursor. It's it's about 80 to 90 percent of people who have REM sleep disorder. In other words, they're not paralyzed during sleep, like you're supposed to be, um go on to develop some type of alpha-stenuclein disease, and that's in the Louis body diseases. So that was that was a key indicator.

SPEAKER_09 38:07

So you were technically asleep when you punched your then husband.

SPEAKER_03 38:14

Yes. Now some people question that, but um one person said that wasn't a nightmare, that was a dream come true. And another person said, Were you really asleep? That was my therapist, actually. Um but yeah, so I I will always encourage people who are acting out their dreams to make sure they get a sleep study by the appropriate people, not just for pulmonary. You need to have a neuro type of sleep study.

SPEAKER_09 38:44

Yes, yes. Dr. Arnold, how did what was it that let you or someone uh around you know you might need to go get some tests done?

SPEAKER_02 38:57

Um it was until to a point I couldn't compensate for things. Um I noticed some difference probably two years, if not more, before my diagnosis. Um I really called it on myself because I was not functioning well at the office um or at the hospital, couldn't do things that I used to do easily, and then came the questions from my wife and my office staff of what was going on because things I used to do quickly I was either ignoring um or it was taking me a long time to do. Probably the last straw was when I would go to places uh to shop or whatever that were really right a right aro right around the corner from the house, I couldn't find my way home. And I didn't have enough sense to turn on my GPS because I was right around the corner from from the house, uh, where I'd have to as much call my wife and have her talk me through where I was going. Um, like Chris Ann, I first lost my executive function, uh, where I used to be able to run down a whole page of uh numbers or dollars, I'd be within sense of what my accountant would come up with. Um, and that has gone away. I've had to give up many of the tasks that I did uh to my wife, who's fortunately able to do them and take them over, but that was really hard to do, and um diagnosis threw me into a deep depression. Uh I didn't really want to accept it. Um I lost the ability to to work, uh, lost my identity, lost my purpose.

SPEAKER_09 41:02

What did you do for a living, Doc?

SPEAKER_02 41:06

I was a podiatric foot and ankle specialist, mixed profession of general foot and ankle care and surgical foot and ankle care.

SPEAKER_09 41:16

Okay. Okay, thank you so much for sharing. Also, same with you, Chris Ann. Uh Monica, please um let us know what was it that got you to go get some tests done? What was happening?

SPEAKER_06 41:30

As I mentioned before, I was a high school special needs teacher. And um one of the things that we'd have to do is like read a read tests aloud to students. And I found myself having trouble staying on the line. I would lose myself on a page, and um, eventually I just started reading with the ruler and and really didn't think too much of it, but I had the same problem when it was time to take attendance because I had to stay on the line. And um, you know, it would take an extremely long time to take attendance because I was marking the wrong students' apps and stuff, so I had to double and triple check. And so I didn't think a whole lot about it, but then one day I noticed that I had all these sticky notes on my desk. So I was like heavily relying on memory aids. And um I had I was having trouble multitasking. I would get very easily agitated, easily overwhelmed, and also had trouble paying bills. And math has always been my strength. I've paid bills since I moved out at 18. So those were most of the things that had me, you know, get checked out.

SPEAKER_09 42:35

That I'm finding a commonality between the three of you is that you personally recognized that some things were different. And independent of what whether someone else in your life pointed it out to you, you had your own markers and indicators. And then I want to just congratulate you for being courageous enough to not ignore it and to go and talk to some healthcare professionals to try to dig into it. So uh let's chat just a little bit about what the process of diagnosis was like.

The Diagnosis Maze And Mislabels

SPEAKER_09 43:12

Who did you get to it right away? Uh, was it a struggle to find a neurologist or the right types of tests?

SPEAKER_03 43:22

It's difficult, and I think I can say that for almost anybody I've met that has any type of brain change. Um I'm trying to think. I think I saw three neurologists, three psychologists, um, and two sleep doctors before I finally got to the right place. And all of them were centers of excellence um for neurodegeneration. And I think that speaks to the difficulty. But I and I think oftentimes we don't look at what the patients. Or the person's baseline was. So even though I could still function, I wasn't functioning like I normally did. And of course, there's fluctuations. So one day you're you're doing okay, and the next day you're not. And I will say that I think that makes it more difficult for the neurologist or the specialist to, you know, try to diagnose us.

SPEAKER_09 44:28

Monica, you were sharing with us uh off camera that you've had maybe five or six actually gotten by you've actually been diagnosed with multiple different types of dementia or impairments. Tell us how that has been going.

SPEAKER_06 44:47

Um first I've I um had uh migraines for years. So when I first started being concerned, I I would mention to my neurologist um that I was concerned about my cognition, and you know, he assured me that you know he didn't think anything was wrong. And um, so we would have this conversation for a couple of years. And so eventually he did send me to a memory place, you know, to be um to be tested. And then that's when they said that I have malcognitive impairment. And so, you know, I went with that diagnosis for several years. Meanwhile, things are progressively getting worse. So um then I went to a um a university hospital. Well, well, actually, I think no, I had a neuropsychology test. And so that person said that it was probably frontal temporal dementia. And then I went to um a university hospital and I had a PET scan and it confirmed frontal temporal dementia. And so um, and I was encouraged to, you know, leave my teaching career at that time. And so the following year, when they repeated uh the PET scan, it did not indicate frontal temporal dementia. So they said, well, you're probably just depressed.

SPEAKER_09 45:59

And you know, and wait, I'm sorry, hold on, wait a minute, Monica. They took, they reversed this. Sounds like a bad call in a in a sporting event. Like they reversed the call.

SPEAKER_06 46:11

What the whole heck? But it's not uncommon. I'm finding that in these support groups is really not that uncommon. So um said, no, you know, and they thought this was the best news ever. You know, they said you're just depressed. And and it would have been great news if I felt depressed or if my symptoms had gone away. Just because the PET scan changed, don't mean that my symptoms had changed. So, you know, they said, come back next year. So, you know, I went home and um the the next time I saw um a neurologist, that doctor said, I think all of your problems are due to anxiety. And he gave me the maximum dose Lexapro. He said that he can, this is a primary care physician, and he said that when he's talking to someone with dementia, he'll know within five minutes of conversation that that person has dementia and that my vocabulary was too high for me to have dementia. I said, okay. Start taking the Lexapro, start seeing a psychiatrist. And so the next neurologist I saw, he said, Well, all of your problems I think are due to lupus.

SPEAKER_09 47:15

And um, I think this was oh wait, Monica, you coming in hot. This feels like an SNL skit. You know, I'm a comedian and I am not making light of what has been your journey, but that is a lot to digest.

SPEAKER_06 47:32

It's been a roller coaster ride. So um I had already had one that my rheumatologist that initially diagnosed me with lupus, I was you know, had explained to him about my colon and problems, and he didn't think that it was due to the lupus. And so since then I've had two more rheumatologists do extent extensive blood work, you know, where they look at the type of form of uh neuropsychiatric lupus that it can impact the brain. And my inflammations and levels are down. They said it's just a mild case of lupus, so they didn't both doctors, most rheumatologists did not think that my symptoms were due to my lupus. So, and I've lived in multiple states. So when I moved back here to Georgia, I went to um a university hospital here, and um two neuropsychologicals, but my and he gave me another, this was another MRI. I've had a few, but since my brain is not shrinking, then he said that um he thinks it's functional neurological disorder, which is where the brain is not shrinking, but the brain is having trouble communicating with the body. So that's the last diagnosis I was given. I was given away. Woo! 100% confident with that diagnosis either. Either.

SPEAKER_09 48:44

I I you have very good reason to be suspect on the diagnoses. Thank you so much. That I I um what what what a a schlep to have to go through. That is I'm awful that you that you have been and are continuing to experience that. All right, Doc.

SPEAKER_02 49:08

Um some of the things that I had was similar to Monica. Um I think all of us kind of called the ball on ourselves. We knew there was something wrong, got to the point we couldn't compensate, started seeing health care. Um I started with my primary care physician who said, Oh, you're just tired and depressed, you need to take time off uh from your practice, of which I kind of laughed about because I asked him when was the last time he took any time off from his practice. Um, after my wife chimed in saying, no, it's not that. We're seeing a functional problem. He referred me to a neuropsychologist that was in their healthcare system. And when we called, they said, Oh, we can get you in in six months. Uh Michelle wasn't willing to accept that. And we went to we tried to get into a neuropsychologist outside their system, and Michelle started calling them every day, saying, Do you have a spot open? Do you have a spot open? Put us on your cancel list, and whenever you get a spot open, call me and I will be there. Um I finally went for neurocognitive testing, which was torturesome because it was a six to eight hour paper and pencil test. And as you did it, you knew that you were screwing up on it, but you couldn't do anything to backtrack. Uh mine was at one time I was sitting there and there was a math portion portion, and I was using my hand to kind of count, and the examiner reached over and slapped my hand and said, You can't do that. And I'm going, that's part of my functionality. She said, No, that's part of your um. I was then sent to a neurologist who did some testing and said, Yeah, you've got malocognitive pen impairment with early onset dementia. Um and of course that hit hard. And what has to be noted is that a person can show up negative on all the tests, whether it's paper or pencil, PET scan, MRI, and still have dementia or some form of dementia. Um so because of what I did, the doctors put me on permanent disability. Well, had insurance for it, and when I went to make a claim, they put me back through the neurocognitive testing. And once again, the doctor said to me, Well, you just have depression. I told wasn't depressed until I was sitting in front of you with the style. Um and my wife saw me just starting to climb the wall or climbing over the desk to beat the crap out of them.

SPEAKER_09 52:29

Um and no, but that's real, Doc. I think that's uh your response was I think that should have been expected, or at least it doesn't seem unreasonable to me. Let me say that. Now, I've obviously been my mom's care partner for about 15 years, and I would say about 70% of the testing that you all described, she did experience on some level, uh, maybe not repeated, because I then had to call it. Well, I chose to call it because she was too far along to herself say, uh, this test isn't helping me, or I'm not following along. I could tell where she was um not doing well, or that it was basically going to be a futile uh exercise. This the amount of effort each of you has already put into your health and wellness is uh extraordinary. I love the fact that um Dementia Minds, the organization, chose to put dementia right, the first word, because it's saying, hey, we have minds that have dementia, yet we're still living. Not only are you all all here talking with me, but it appears that you um still have activities that you do on a daily basis or weekly basis. Uh Monica, what are some of the things that you do, like a day in the life of Monica,

Tools For Living And Staying Social

SPEAKER_09 53:59

that still happens even with your brain change?

SPEAKER_06 54:04

Outside of advocacy groups, uh outside of that, I um I've become a plant lover. So I have take care of my plants and just enjoy quiet little activities outside with my mother, listening to the birds. And um yeah, I'm I'm still involved in a book group, a book club. I've been involved in it most of my adult life. I have to do it differently. I mostly listen to the books now and take notes, but those are some of the things that I still enjoy doing, in addition to cooking. I love to cook.

SPEAKER_09 54:35

Oh, fantastic, fantastic. Have you found yourself coming up with new strategies or tactics to get your recipes together?

SPEAKER_06 54:43

Yes, yes. I I I have to um, I think one of the first things I used to have to I started doing was um setting timers. Because I would, you know, if I walk away from the kitchen, I forget that the food is cooking. So I set timers and um I use um chat GPT. Um, like if I'm cooking, um, I have a family, four four of us live here. So if I want to double the recipe, it can double the recipe for me. Take a picture and ask it to double the recipe and it can do that. Um just writing step by step. If I watch the video, I'm gonna have to write step by step what to do. Dr.

SPEAKER_09 55:24

Arnold, uh a day in the life, what are some things that uh systems or organization tools or is there anything that you find that's helpful as you're living with dementia?

SPEAKER_02 55:38

Yeah, there are. I used to be a fairly good social animal. Um my practice was in Virginia, where I would be able to do landscaping all year round, but we moved up to Michigan where family was. Um and of course, winter gets in the way of that up here, as you know. So I'm only able to, well, this year I'm only able to do any landscaping from uh June and probably maybe to November. Um but I used to be a good cook and I've absolutely lost that ability. Um when I try a recipe, I have to set out the ingredients one by one in front of me. And when I'm done with that uh piece of it, I have to put it away so that I don't use it twice. Uh, but even with that, I I screw up recipes. Uh Michelle was never a cook. We used to be able to tell when her cooking was done because the smoke alarm would go off. Um so now we do a lot of carryout and um a lot of pre-done meals.

SPEAKER_03 56:58

Okay. I have to, I just have to laugh about the cooking thing. Okay. I am was never a great cook, but you know, holiday time. I mean, I brought it home. I really kicked butt. And now I tell you, what was it? Not last year, because the year before, I thought I could do it all, and I fell asleep standing up in the kitchen. My sister came over to give me a hug and she said, You look tired. And I put my head on her shoulder and I honestly fell asleep. Then I have to make you laugh. Back to the testing. That testing is just a pain. And you know, they first do memory. Well, with the Louie body, your memory's okay. I can still do, I do okay on the memory test. It's everything else I screw up. But you have to do the A to one or one to A, two to B, three to C, you know. Well, I argued, I said, Well, I'm sorry, you have the typographical error. There is no number three. I'm just gonna have to move on. And so I feel like I reaches over and puts some things in his so now when I can't see things, I just say, Well, it's a number three. That's the number it's a number three.

SPEAKER_09 58:26

What one of the the I got have some of the literature for the National Council of Dementia Minds, and one of the most powerful quotes that I saw there is that the number of people when asked or

Hope, Stigma, And A Clear Ask

SPEAKER_09 58:47

when questioned, quote, said, I'd rather die than get dementia. That's a really big statement. But I believe firmly that hearing the stories of people like yourselves and others that are part of your organization that are living with dementia, we're ripping away this dark and ugly stigma that it's better that I'd rather just before I even get diagnosed, I'd rather just die. Like as if the diagnosis is some immediate and awful death. And so I cannot stress enough how much it means for you all to share your stories, what you're living, what it took to be diagnosed, how you're currently living with it, the fact that it does come with potentially some anxiety or depression because you are watching yourself or you're feeling yourself not be able to do things you used to do. And there's a sense of loss that you're holding um space for. I'm hopeful that the more and more people in the community will come to understand what dementia looks like, that there is life with dementia, and that if we share and tell our uh individual truths, maybe we can get to a cure quicker because we'll we'll know more people who know how to help us attack it. And I would like uh one of you, I'm not I'm not gonna pick on anyone, but I would like one of you to share uh one thing that could be hopeful to someone who is trying to decide if they want to go get the test done or trying to make a step to dig into what's happening with me and should I find out if I have dementia, or I'd rather just not know and just, you know, kind of fade away because you're gonna die from something anyway. I hear that a lot in the South.

SPEAKER_02 1:00:55

Um there are a number of factors, you know, for myself and I think all three of us, we compensated until we could not anymore. We couldn't hide it. Um fortunately, or maybe unfortunately, now there are many new tests that let diagnosis come much earlier. The question becomes behind that, if you diagnose much earlier, what do you do with that since you're in May now within the last what two, three years, Chris Ann? Some new treatments that have come out, but they're only used for very early. So, you know, we're still fighting to bust the stigma of the diagnosis. People need to have an idea before it gets really full-blown.

SPEAKER_03 1:01:55

Knowledge is power, and um dementia is becoming a chronic illness, and people can get better with the right symptom management. Um, my scans remain normal for seven years. They just now have started to change. So um getting involved in clinical trials, even if they're just observational, uh, you can learn so much.

SPEAKER_09 1:02:28

Agreed. Knowledge is power, knowing is better. So I'm gonna give all of you a big virtual hug. Um like I said, I'm originally a southerner, I'm real touchy, feeling. So this is me reaching out and touching. Okay, I'm not feeling you in a way that would be inappropriate. Okay? So I'm just touching and giving a hug, and I'm rocking in a way that you would do to a new person at church. The snuggle up. Yo, there is life with dementia. The best thing that I heard is be honest with yourself. You can tell and you know if changes are happening. It's more than you can't sign your keys. It's more than you don't remember somebody's name at work. When you are compensating so much that you can't get things done that you've been doing for years, try not to let denial and frustration or lack of sleep be the excuses that you give. Go to the doctor. The most compelling thing that everyone said they were, whether they were in studio or virtual, was that they absolutely knew, trusted themselves, and kept pushing medical personnel to figure this shit out. You are worth it. Fight for yourself, advocate for you. Thank you for tuning in. I mean, really, really, really thank you so very much for tuning in. Whether you're watching this on YouTube or if you're listening on your favorite podcast audio platform. Either way, wherever you are, subscribe. Come back. That's the way you're gonna know when we do something next. Y'all know how it is. I'm Jason Miles. I might just drop something hot in the middle of the night.