The Whispering Signs of Dementia and the Quest for Clarity
Apr 07, 2024
Kenny Cullen
When the familiar world begins to fade into a fog of forgotten names and faces, the journey can be as mysterious as it is heart-wrenching. Ken Cullen knows this path well, watching his vibrant wife succumb to early onset dementia. Together with Rob, we navigate the nuanced beginnings of this relentless condition, unraveling the story of a woman once defined by her sharp wit and unwavering memory, now grappling with a reality where even the most routine tasks become insurmountable challenges. Through our candid conversations, we uncover the subtle yet significant signs that pointed towards an unexpected diagnosis; the confusion, the personality shifts, and the moments of clarity that are as fleeting as they are precious.
Grasping the gravity of early detection, we follow Kenny's poignant tale, as he recounts his wife's battle with the shadows of cognitive decline. Our discussion moves to the forefront of medical advancements, understanding the indispensable role of MRI scans in capturing the earliest whispers of dementia. We further delve into the labyrinthine process of managing mental health through medication, recognizing that while pills like Don's may not be a panacea, they are vital beacons of hope in maintaining daily function. This episode is an intimate exploration of love, loss, and the enduring strength of the human spirit in the face of a disease that tries to rob us of our essence. Join us as we share these deeply personal narratives, offering a beacon of understanding for those navigating similar waters.
When the familiar world begins to fade into a fog of forgotten names and faces, the journey can be as mysterious as it is heart-wrenching. Ken Cullen knows this path well, watching his vibrant wife succumb to early onset dementia. Together with Rob, we navigate the nuanced beginnings of this relentless condition, unraveling the story of a woman once defined by her sharp wit and unwavering memory, now grappling with a reality where even the most routine tasks become insurmountable challenges. Through our candid conversations, we uncover the subtle yet significant signs that pointed towards an unexpected diagnosis; the confusion, the personality shifts, and the moments of clarity that are as fleeting as they are precious.
Grasping the gravity of early detection, we follow Kenny's poignant tale, as he recounts his wife's battle with the shadows of cognitive decline. Our discussion moves to the forefront of medical advancements, understanding the indispensable role of MRI scans in capturing the earliest whispers of dementia. We further delve into the labyrinthine process of managing mental health through medication, recognizing that while pills like Don's may not be a panacea, they are vital beacons of hope in maintaining daily function. This episode is an intimate exploration of love, loss, and the enduring strength of the human spirit in the face of a disease that tries to rob us of our essence. Join us as we share these deeply personal narratives, offering a beacon of understanding for those navigating similar waters.
Speaker 1:
Hey guys, this is Ken Cullen, back again to talk to you about my wife's dementia journey, and today we're going to bring a guest on to discuss this a little further. We've got Rob here, he's familiar with it somewhat and we're going to have a little conversation with him about this dementia topic.
Speaker 2:
Awesome. Listen. Thanks so much for bringing me on your show.
Speaker 1:
I really appreciate it. Thank you so much for being here.
Speaker 2:
Yeah, listen, you're a wealth of knowledge with this stuff and the conversations I've had with you. It's amazing. I know you're going through it, but what really touched me is how open you're willing to be about this subject and it was amazing, you know how, how again like transparent and it made me start thinking about like holy cow there, there's people in my life that I feel like fit this category, you know, yeah, yeah, there's no doubt, you know.
Speaker 1:
Uh, you know, the thing with this, with this dementia, is that I'm finding more and more younger people being diagnosed with it.
Speaker 2:
Um, you're kidding, yeah.
Speaker 1:
Yeah, for the reasons we don't know, why, but the early stages of this. It's different for everybody, but in the situation with my wife and what I first noticed was there was some forgetfulness and, like I said, I had a couple of people come over the house and my wife didn't recognize them. So those were the early signs that there was something a little off. And then I know I mentioned it once before that my wife had to go to the doctor with my daughter and the pediatrician knew something was off at that point too.
Speaker 2:
Was this a doctor's appointment for your daughter or for your wife? That was for my daughter.
Speaker 1:
My daughter had to go.
Speaker 2:
Oh, okay.
Speaker 1:
So my wife, I was at work, my wife took her.
Speaker 2:
Yeah.
Speaker 1:
And the pediatrician had called me at work and says, ken, something's up. He says she's not understanding what I'm writing down.
Speaker 2:
I wanted to give her some prescriptions to get filled For your daughter, for my daughter, she wasn't understanding and she made me write it down two or three times.
Speaker 1:
And that's when he called me and said ken, something's going on. It's the early stages of something. I don't want to get into it too much but, please go get her checked out. And then we did so.
Speaker 2:
That was the situation was there anything, though, like leading, like, leading up to that? I mean obviously, like if it's to the point where, like, the doctor is making notice of this stuff yeah was there anything that you saw before that, that you were like? You know, maybe for like, and was it for like a year or something like that? Like how long yeah?
Speaker 1:
prior to that. Well, I'll tell you what happened. Um, when I first noticed the signs, we're looking at 2016 okay, it was around march, april of 2016 around this time and when was she diagnosed? She was diagnosed in the end of April of 2016.
Speaker 1:
Okay, okay, but now I also found out that a year prior to that, her girlfriend had mentioned to me, you know, really recently. She says Ken, you know, even when she was working in 2014,. I noticed things back then that she was just something just seemed a little off. Yeah, personality-wise, I didn't detect it. I was. You know, I'm with her every day. Obviously I didn't detect anything different.
Speaker 2:
When you say personality-wise, like she was irritable, what do you mean by that?
Speaker 1:
Nah, she just wasn't. The clarity just wasn't there. It seemed like she was kind of foggy. She noticed something that just and this is going back I'm going to say maybe the end of 2014, the early part of 2015. Now she was still working at the time.
Speaker 2:
Okay.
Speaker 1:
Because she didn't really Well. Actually, she lost her job in February of 2014.
Speaker 2:
Okay. Now I don't know if they detected something there and maybe that's why they let her go and it was connected, maybe, Well they had a change of personnel. Okay.
Speaker 1:
They brought in some new bosses.
Speaker 2:
She worked in the dental field.
Speaker 1:
They brought in a new boss and my wife and this guy didn't really hit it off too good. But not only that, my wife is not one to adapt, to change too good.
Speaker 2:
And she used to complain to me.
Speaker 1:
Oh, you know.
Speaker 2:
Like she was always like that. Yeah, she was always like that.
Speaker 1:
But I don't know now if maybe the doctor was saying, yeah, now she's getting irritable, she doesn't want to learn a new computer system. You know, I don't know if those were the early signs. That could have been an early sign of something, but her girlfriend had mentioned to me that she had noticed something a year before she was diagnosed. And then, like I had mentioned in one of my episodes that a friend of mine had stopped by and he was in my wedding party, she looked at him and she, like she didn't, she smiled.
Speaker 2:
I didn't even say hello yeah so that was kind of an odd thing, I I see you know, because a lot of people like, if everyone's just being honest, right, a lot of people go through moments where, like, they forget things, but it doesn't mean they have dementia. Yeah, right, so I guess I guess what is what you're saying? Like it's important to understand, like the the individual be, like, this is unique for this individual, right, because everyone forgets stuff. Yeah, right, so maybe it's like paying attention to how that person normally is acting, and are they acting different from their normal way of acting?
Speaker 1:
and you're saying with your wife, her personality changed a little bit the personality changed and the thing is this also and again, this might have attributed to it I know one of the doctors had mentioned it uh, also to. She lost her parents in 2011. She lost them six, seven months apart.
Speaker 2:
Oh my gosh, You're kidding. She lost her mom in March of 2011.
Speaker 1:
I mean, she lost her dad in March of 2011. And then she lost her mom in November of 2011. So those were two big hits and her dad actually literally died right in her arms. I was there when that happened.
Speaker 2:
Oh my gosh, I mean, that's absolutely tragic.
Speaker 1:
Yeah, it was pretty bad. He was starting to slip and he had dementia too. I didn't know what dementia was at the time, but he had dementia. Now I'm realizing, now that my wife has it. Now I'm looking back and I'm saying you know what? He had dementia also.
Speaker 2:
So this is a genetic thing it must've been.
Speaker 1:
So I'm thinking it might've been genetic. In addition to that, not only losing her parents seven months apart and then seven months after that, then she lost her job. So those were three hits that she took in a matter of maybe 18 months.
Speaker 2:
So do doctors. I mean because you're I know you're listen. You've been going through this a long time. You've spoken with a lot of doctors. Do doctors think that you can have this like genetic thing and that it could be triggered? Is that possible? That's?
Speaker 1:
exactly what one. One of. That's what the neurologist has said.
Speaker 2:
He says you know, you know this might have been something that was like maybe dormant okay then you know all these, all these different obstacles that hit her yeah it kind of like it threw her into a whirlwind and she, her brain, couldn't, couldn't handle so for people that maybe have a family history of dementia, and one of the early warning signs could be even you predicting it ahead of time by saying, listen, listen, we just had tragedy, we've got a history of dementia. This could be something that triggers. Maybe we should be sensitive to it.
Speaker 1:
Yeah, absolutely.
Speaker 2:
Interesting.
Speaker 1:
The funny thing about it, though, like when her mom and her dad passed, she seemed to be functioning fine, still working. Then she lost her job, and then I think I'll be honest with you. I think right after she lost her job. And then I think I'll be honest with you, I think right after she lost her job I noticed changes.
Speaker 2:
Maybe not right away. I would say maybe three, four months after that yeah personality changes right, starting to get a little but that was the straw that broke the camel's back right there absolutely.
Speaker 1:
That was definitely the losing. See, you know, the funny thing is, to this day, I said to myself I wonder if she didn't lose her job if this would have never happened.
Speaker 2:
Interesting.
Speaker 1:
Because it gave her a purpose to get up and go do something every day.
Speaker 2:
Sure.
Speaker 1:
And when she lost that, she lost her will.
Speaker 2:
All right, you're making actually a really good point right there. Like certain things we can't control, Like all right, so she didn't own the business, so she lost her job.
Speaker 2:
Yeah 31 years so, and you were saying she had a routine, like she was getting up, she was focused on something. That probably helps someone's mind, right? So maybe preemptively, people who feel like all right, we've got a history of this stuff here, something serious just happened in our life, let's see if we can immediately replace that thing this way. That routine is still there, like do you think that would be helpful?
Speaker 1:
Well, let's put it this way when she lost her job, she was very despondent and we were trying to get her. Actually, she got a letter of recommendation from one of her bosses and he sent her on interviews. And I used to say to her, laura, what happened on the interview. She couldn't open up. It was like it was either.
Speaker 1:
she was afraid to talk to me about it or maybe she just couldn't go through the process again, because, hey, hey, you're working somewhere 31 years and all of a sudden, now you, you're starting at the bottom again yeah she, she couldn't handle it.
Speaker 2:
Personality wise, I saw the whole demeanor was just she was way off but at the time you were probably credding it to the fact that, oh, she just lost her job. Anyone would be upset, anyone would be different. So you're, you're like it's because of that yeah you're in that moment, you're probably not thinking. It's dementia.
Speaker 1:
No, well, right, and I'm not thinking that maybe the loss of her two parents had anything to attribute it to it.
Speaker 2:
Right.
Speaker 1:
I didn't even cross my mind.
Speaker 2:
So the moment that dementia that word started to become part, something that you were discussing, was that when you got that call from the pediatrician, or was it a?
Speaker 1:
little bit. Well, the first sign of it was, like I said, when my buddy had stopped by and he walked in because I haven't seen him in a while.
Speaker 2:
Yeah.
Speaker 1:
And she looked at him and she didn't. It's like she didn't acknowledge him and he looked at me, and this is someone that she knew. Oh yeah, he was in my wedding party, yeah.
Speaker 2:
Okay.
Speaker 1:
And she says Kenny, what is going on here? She didn't even like say hello to me.
Speaker 2:
Oh.
Speaker 1:
Thought that he thought something was off. He says something's not kosher there, something's wrong, but he didn't elaborate on it. We hung out for a half hour and then he went on his way and that was it and then when, like I said, it might have been a month or so later, when my daughter had to go to the pediatrician, and then he had called me and said Kenny, something's going.
Speaker 1:
He called me and said Kenny, something's up, she's not getting it, she's not understanding the information I'm writing down, she wants me to write it again and she wants me to repeat it two and three times.
Speaker 2:
Something's off and that wasn't normal for her right.
Speaker 1:
No, no, no way she was sharp as a tack All right, sorry.
Speaker 2:
So some of the things that you're saying, like I've got a family member that's literally doing the same things that you're, you're that you're sharing right About your wife that early on, who's starting to not remember stories that she just told, or remember people's names, or remember people in the family and it's like little things. I'm not saying like it's it's all the time, but it's enough where, like all the family we're, we're like taking pause. We're like what pause? We're like what was, what was that, you know? Like we're confused by it. Um, but so here's the honest question then is that like, is it hard? Like what's the process then of diagnosing? Because I think that's a big fear. It's like like, like we think there's something wrong, but do we have to go through like years and years of testing to figure this out? Like, is it like? Like, what suggestion can I make to my family? That's like an easy solution to this? Like, guys, we can figure out if it's just her just kind of forgetting stuff or if it's something serious. Is it easy? What do you do?
Speaker 1:
Well, basically, what happened in the situation after what happened with the pediatrician, I kind of knew something was off kilter. I didn't really know if I was going to take it for a scan or something. I was just kind of holding off just to let let time, you know, take its course a little bit. And then I realized that if the if the talk to him, he says Kenny, you know, just go get, go get an MRI or a CAT scan, get something done and let's just see. So that had to be around I'd say about April of 2016.
Speaker 1:
And we took her for a MRI. The first one, if I remember correctly, came back clean. And then I got a second opinion. I went to one neurologist in my area which was up in New Hyde Park. He says, no, kenny, everything looks fine, but the personality just didn't match what he was saying. So I took her to another neurologist that I knew out here in Plainview through a surgeon that I knew who operated on my back. He says, kenny, go see Dr Soni Went to her. She says, kenny, I'm going to send her for another scan and it came back that there was the beginning stages of deterioration behind the right eye.
Speaker 2:
And that was just from MRI.
Speaker 1:
That was the MRI. It wasn't a CAT scan, it was an MRI.
Speaker 2:
So you just need an MRI, yeah, and an MRI can pick up with this stuff.
Speaker 1:
An MRI will definitely pick up, or a CAT scan too. But the thing with the CAT scan, you know they're using radiation.
Speaker 2:
So I won't go with the MRI.
Speaker 1:
So we did the MRI and it showed the beginning. She called it like atrophy behind the right eye. It was the beginning stages of this deterioration of the brain and she said to me that it's going to continue. You know, there's no timeframe. What I did at that particular time is, after getting the scan from the MRI, I went to a. She recommended me to go see a professional person.
Speaker 2:
I don't know exactly what her name was who deals with just people, with dementia.
Speaker 1:
Right Deals with something.
Speaker 2:
Now was this a neurologist that you went to that did this?
Speaker 1:
The neurologist served for the MRI.
Speaker 2:
Okay.
Speaker 1:
We had the MRI done. It's a one-gap theory. We had that done.
Speaker 2:
Okay.
Speaker 1:
So that showed the information that we were looking for.
Speaker 2:
So step one is go to a neurologist, I guess.
Speaker 1:
Yeah, yeah. Well, your primary will send you to a neurologist, so your neurologist will definitely whoever's going to write the script to get the scan done Okay. So your neurologist would probably be the first thing. Yeah, yeah, yeah, because she was also running tests with her too. You know writing, you know who's the president.
Speaker 2:
Oh, is that right? Yeah, this is like in person we were doing.
Speaker 1:
You know, we were doing like puzzles, my wife was doing all was getting all of that, though she was getting all of it, which is probably why the first doctor was like I don't really see anything.
Speaker 2:
Right, right. So getting that second opinion is really important.
Speaker 1:
But even with the second, even with the second doctor, everything that she was writing out for who's the president. Can you do the puzzle? Can you write these numbers backwards? I'm going to do like like a little crossword puzzle. Can you handle that? She was fine with all that. So she says, yeah, you know what, kenny, you know what, it's not that bad. But still, let's just get the MRI. And then the MRI showed there was the early stages. And I could tell you another thing even up to maybe a year or two, even after that diagnosis, my wife was still fine at the neurologist's office doing certain, you know, scrabble and different type of word things. She was still okay with that.
Speaker 2:
Which is now. I'm connecting dots here, which is probably why, I'm going to guess, a lot of dementia is caught late because people probably ignore the initial warning signs.
Speaker 1:
Yeah, could be.
Speaker 2:
What's the benefit of detecting it early, like what can you do?
Speaker 1:
Well-.
Speaker 2:
Like you yourself, like what can you do as a family to prepare and is there anything that the person who gets diagnosed with dementia like? What can they do?
Speaker 1:
Yeah, well, unfortunately, and again after talking to a professional person that the neurologist had recommended, as soon as I got to her office she said to me look, this is a seven, eight stage process and your wife is in stage one. And again I left there kind of aggravated because again I'll never forget the conversation she was running. Again, this is the early stages of this disease and she's running through all what's going to happen six months a year, two years, three years. I wasn't comfortable with the conversation because it was almost like she got me depressed, to be honest with you.
Speaker 1:
But she was only trying to protect me, to show me what was coming down the road.
Speaker 2:
Yep.
Speaker 1:
And in the early stages I was in denial because it wasn't that bad. It really wasn't. The signs were there, but she was functioning fine, Still driving.
Speaker 2:
Everything was fine. You're like we could do this. This is fine. If it's like this, if this is dimension we got this Right, exactly Okay.
Speaker 1:
And at that point then I thought changes were starting to come a little bit more frequently. Once we got past year two and year three, I started seeing, like you know, she's acting a little strange. You know, perfect example she goes into the supermarket yeah and um I was with her one day and um she started grabbing things like randomly, yeah, just randomly grabbing things, yeah grabbing things and I said, what are you doing?
Speaker 1:
and she wasn't answering me. Okay, and then I had left to go out to the car and the manager grabbed me okay he says uh, you know your wife's stealing. I said what? You're kidding he says, yeah, she's, she's grabbing things and she's putting them in her bag, like she don't want to pay for them. So that was another sign.
Speaker 2:
Which is why, it is important to. If you see something that's off early on, then go through the process, go to the neurologist, get tested. This way you can get ahead of it.
Speaker 1:
Got to the point where the manager said look, said I know you're going through a lot, he says, but do me a favor, yeah, don't bring her in here unless you're here, because you know what she's gonna start stealing?
Speaker 2:
yeah, she and she started and it happened again really yeah, she started doing crazy things like that I mean I hate to say crazy, but yeah, things that were just abnormal, right for her okay, so these were.
Speaker 1:
This was maybe this might have been like year three, so 2016 yeah, this might have been around so that's, you're already deep at this point.
Speaker 2:
But like, going back to like, the early stages though, like before someone's diagnosed we're talking about for family like me, like I, I'm thinking literally of my wife's grandmother right now, yeah, and she definitely is doing some of these things that you're saying that your wife did prior to her being diagnosed, and I think the advice that you're giving, I think that we need to act on this right away. What's the worst that can happen? By going to the doctor?
Speaker 1:
My suggestion would be this If you're starting to see signs A, keep an eye on it. But, more importantly, if you're really concerned, go get a scan. Go get an MRI. It's really not a big deal, I mean, it takes 15 minutes. You get an MRI and it'll show what's going on in the brain, you know. I mean, I'll be honest with you, I'll give you a funny story and this has nothing to do with my wife, really but I had to go for an MRI back in 2015 because I was going through a lot of anxiety. I was starting to get like panic attacks and I think it might have been because of what was going on with my wife in the early stages. She had a cousin in Florida and let me tell you something, I started getting dizzy spells. I couldn't stand up. I said, my God. I said, do I have a brain tumor? Well, you know what it was? It was anxiety. It was diagnosed as unprovoked anxiety.
Speaker 2:
Yeah, yeah.
Speaker 1:
The reason why I bring it up is because an MRI will show it good, better and different, and these were the early stages. So I say somebody who has some, you know they're thinking that there's something, something's off Go get a scan. Go get either a CAT scan or, in my opinion, an MRI would be better.
Speaker 2:
Yeah.
Speaker 1:
That'll show what's going on, and then you take it from there.
Speaker 2:
Yeah, I mean, that's all you could do. Wow, Wow, Listen. I can't thank you enough, honestly, for giving that advice and I think that you know my family has to act on this. You know right away, based on what you're saying, and I think anyone who's?
Speaker 1:
What kind of signs are you?
Speaker 2:
seeing Like for me, for us, we're seeing that she's forgetting some names of family members, like family members that she is 85. Yeah, she's 85. She's going to be 85, rather it's almost okay.
Speaker 1:
She's going to be 85, rather. It's almost okay.
Speaker 2:
I mean that's okay, no, I know that, but she's like, she's forgetting the names of family members like that. We don't see that often. Yeah Right, she'll tell us a story and then, honestly, like several hours later, tell us the same exact story and then, even though we say, oh, you already shared that, she gets upset, she gets angry. She was like what are you talking about? We never talked about this. And so it's happening enough where all of us have been like on the side saying, hey, did you just see that? It's just different, it's not her normal sort of like self. And that's why, like talking with you, I realized you know what it doesn't hurt to like let's go to a doctor and let's just get checked, just in case, right?
Speaker 1:
Well, the thing that you're mentioning, too, is that um and this doesn't happen with my wife, but like who's that? Your grandmother?
Speaker 2:
you're saying yes, my wife's grandmother okay, some of the older people.
Speaker 1:
They get a little defensive and they can get a little feisty and they get a little nasty yes I've heard that. I've even seen, I've been, uh, I've seen it on television too. They have these commercials yeah you know, they start getting like sure, sure they get.
Speaker 1:
They're frustrated they get frustrated, right, Because they know something's wrong. They don't know how to fix it. Yeah, In addition to that and they're probably scared too they're scared Some of them start to wander. Yes, you know, that's another part of it. Doesn't happen in my situation, but it does happen to some other patients. But the case here with your wife's grandmother. Yeah, it doesn't hurt to get an MRI Again, unfortunately. I mean the thing with this. My wife was diagnosed at 59. She got it young. She just turned 67. So we're going on eight years now. Actually, it'll be eight years in April when you're 85, not to say it's acceptable, but it's actually almost expected as you get older.
Speaker 2:
Sure.
Speaker 1:
But more younger people are getting this Now I'm hearing people in their early 50s. She's you know, and there's no rhyme or reason yeah it could be hereditary yeah uh, was there a traumatic event that that triggered it? We don't know. Yeah I mean, this is all stuff that we're just learning as we go and yeah it's constantly something that we're still learning yeah, but I mean to your to your point yeah is.
Speaker 2:
It doesn't hurt, go get tested, you just go to the doctor, that's your first. Don't be the doctor yourself. No, no right that's your first step, because that'll tell you what you're, what you're up against. Yeah, you know, okay, if there is something there yeah I mean they have medication.
Speaker 1:
You know there's pills that can help you, it just keeps it, you know tranquil manageable right, yeah, okay my wife's case. You know, she's been on this uh one, uh, I think it's called don's a pill. Okay, uh, it's supposed to keep it at bay. Is it working? Well, maybe, I don't know yeah I mean she's going on, it is, she's still functioning yeah, you know like I said, this changes, but that that's my suggestion awesome.
Speaker 2:
Well, thank you so much for letting me come on your show and talk about this. I I really appreciate it. You got a great show, man.
Speaker 1:
No, I appreciate it, you know it's been a journey, like you said.
Speaker 2:
It's been a journey Awesome.
Speaker 1:
And you know I'm doing my best with it and I you know I appreciate you coming on.
Speaker 2:
Yeah, sweet, thank you Awesome. All right, all right, take care, buddy. Thank you, thanks again.