WEBVTT
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Welcome to Conversations Through Alzheimer's.
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I'm Amber Marty and I'm Felicia Wood.
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We're sisters and daughters of Rosemary Marty, diagnosed with Alzheimer's in June of 2025.
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We're documenting her journey as it happens and we're sharing every resource we find along the way.
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This is her story and ours.
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Thank you so much for joining us today.
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Today we're going to be talking about the importance of knowing what your options are when it comes to building out your medical care team.
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What we've found over the last year since our mom was diagnosed with early onset Alzheimer's is that it's easy to get lost in the medical system, especially if you don't know what else is out there.
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You don't know what to expect from the doctor or the specialist that you're working with.
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And then more importantly, like we we say this a lot, like you don't know what you don't know.
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And so what we've had to do is to do a lot of research, um, talking to other people, Googling, working with AI even, like trying to figure out like what are other resources out there that might be able to help us.
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And we've we've found a lot of interesting things along the way.
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So we want to share a little bit about what we've done, um, but also maybe some things that we haven't done yet or haven't explored as much of.
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Um and that said, like I will also always start by saying, like, no single family's journey is the same.
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Every single person, every single diagnosis is different.
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And your own approach to medicine, some people are like really like more things that people might other people might consider unconventional.
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Um, some people really like to stick with a PCP, that's it.
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Very little specialties.
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Some people want to go like supernatural and only work with like a naturopath or nutritionist and and things like that.
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Um, there's there's no one right way.
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It's just a matter of knowing what your values are, um, finding what makes you feel like you're seeing either some sort of stability or progress or at least support in the person that you love.
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So um we want to just kick things off and talking a little bit about how we started to build up mom's medical care team.
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Yeah, so she sees a PCP right now, like most people do.
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And um he has been great at being the advocate for her, which is I think so important for a PCP.
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You know, she's been trying to tell, she used to have a different PCP that she would try to tell that like something is off, like I I'm having problems with my language or I'm having these these symptoms, and and she just kind of brushed it off as like, you know, at the time she was in her late 50s, like Rose, you're just getting getting old, like I know it's challenging.
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And and she accepted that because that's what her PCP said at the time.
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That PCP left, and when she started seeing the new one, and we start as a family started to see more of the symptoms and advocating that with her.
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Um, he was really the person that moved the needle on the diagnosis.
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Like he's the one that created the neuropsych evaluation, and then from there got the neurology referral.
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And I think it's just so important to get a PCP that will advocate for you because they're without them, like unfortunately with the insurance and stuff, like you're kind of stuck.
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So if you do have a PCP that's just brushing you off, like get a second opinion, see if there's somebody else in your network that would be willing to meet with you and your family.
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It's it's really important.
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Like, I think throughout this whole episode, we talked about like of getting the right people that will advocate for you and your family and meet you where you're at.
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Well, I think it's really important to um consider also like how age plays into where you're gonna end up falling in that process, right?
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Because, like, to your exact point, mom was in her late 50s, she's seeing a PCP.
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Remember, PCPs don't specialize in the difference between somebody who's stressed, somebody who has depression anxiety, somebody who's older, and they just assume most people don't have Alzheimer's in their 50s.
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Like they just take the base level of like what is they generally see, and because of that, we'll sometimes miss things.
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So, what happens a lot is like it's very common with Alzheimer's and dementia to go very undiagnosed until it's severe.
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And what we found through this process is there are options out there, um, whether it's medications or lifestyle changes that can really take that, you know, decline that is maybe happening to you, start to stretch out that line so that you can have a lot more good years.
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But you can't do that if you don't know that something is actually going on.
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And so for our mom, like it was to your point, like the PCP is definitely been kind of like that central person to kind of say, okay, let's get you with this test, let's get you with the neurology referral.
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They also the person that you reached out to and said, we want a second opinion about the neurologist, and they got us into a second neurologist.
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Like he's been the one to kind of facilitate us being able to move and operate in different ways, which I didn't really understand that benefit until we started working through that process.
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Another thing that's really important to know is like if you're starting with your PCP, like you are definitely more in like what I kind of call like Western medicine territory.
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Um, a very traditional approach to medicine, to uh symptom management, symptom management exactly, your options for like pharmaceutical medicines, that sort of thing.
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And it can cause a little bit of a rift if you are also wanting to look outside of that and look more towards like a functional medicine doctor or an integrative health specialist.
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Um, they can kind of sometimes be at conflict with each other.
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And for us, we actually, as soon as my mom got her diagnosis, I felt really strongly that I wanted her to see a functional medicine doctor.
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And what you should know about a functional medicine doctor is a functional medicine doctor is a licensed uh MD, uh, somebody who is completed conventional medical training the same way other doctors have, um, but they understand to look for the root cause of a disease rather than just the symptom management.
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And so they get they will go into investigating things like inflammation, gut health, hormonal imbalances, nutrition uh deficiencies, and mitochondrial function.
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Toxins.
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Oh, yeah, toxins.
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Um, and they use way more advanced testing.
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In fact, the reason that I knew about functional medicine doctors is because my husband has gone through some illnesses and had to work with a functional medicine doctor to help his health.
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And we found out from working with um his functional medicine doctor that like the way that they look at labs is completely different than most other doctors uh look at labs.
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Like you get your report and you you see like the the bar that says like this range is normal.
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Um our functional medicine doctor, I can't say that all would, but our functional medicine doctor said, yeah, that's like a really broad generalization, and usually even those edges of like what's considered within normal range is not normal or is not uh well functioning.
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And so it's really important, it was important for us, um, for me personally, to see what a functional medicine doctor would see in my mom's workup.
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Um, and so that was something that I would say for the most part, the other doctors have been pretty supportive of.
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Um, they don't work together like super closely, but if uh the PCP or a neurologist runs blood work, we send it over to the functional medicine doctor, um, vice versa.
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Like they they kind of want to know what each other is saying or or doing.
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Um, but there also have been times where uh one of the neurologists might take a look at the kind of supplements mom is on, and like you'll get over and over.
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There's no scientific proof that that has anything to do with uh the helping on this.
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And the truth is like they just don't understand enough about how different supplements they also don't do clinical research on functional medicine at this time.
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So like they they're trained in looking at clinical research from like the Western medicine perspective, and so they can't speak to it, so they can't Right.
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So they're not gonna try to give you it what they feel like is in their opinion, like false hope.
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And and I get that because I do think a lot of people take maybe supplements or vitamins with like as this idea of like it's gonna be a a miracle, right?
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Like, oh, I'll take this fish oil supplement and like that'll make my brain work forever.
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It's like you do have to be really um practical about what each of these it's kind of like what we're talking about here.
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You have to know what each of these doctors or specialists are doing for you.
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Same thing with uh the kind of things you're gonna put into your body, you have to know what those things are doing for you as well.
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And one thing that I've liked about the functional medicine doctor, which we'll go into more in a later episode, but is just also looking at the what are you putting into your your mouth with your uh food?
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How much are you sleeping?
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Like looking at that bigger picture, which um I will say, like our experience with the neurologists, like they sometimes ask those questions, but like it's not usually that like really holistic view, which is something that I thought would be important to bring to the puzzle.
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But that said, a lot of people don't feel that way, and so I do think it's really important that you consider if you're on on this journey, like what will make me feel supported?
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And and that goes for like me, the maybe the person with the illness or the disease, but also what is your perspective that you feel like is important from the caretaker too, right?
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Like, and and hopefully in our case, we're really lucky because mom has been very accepting of almost anybody that we've encouraged her to go see, but not maybe not everyone will feel that way.
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Speaking of like the parts that, like, maybe there's been some differences of opinion.
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I feel like for our family, the only thing that's caused like a little bit of a riff is like sometimes our dad can be a feel like a little dismissive of the functional medicine stuff.
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Like his perspective was kind of like, how long is she gonna be on all these supplements for?
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You know, like what is the end of this look like?
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Like, is this even helping?
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And again, we'll get into that a later at a later time.
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But then the only other one was maybe at least so far, was around the neurologist, which I know you have some thoughts on that.
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Yeah.
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So um, when her PCB got her into a neurologist, we didn't like I mean, my mom tried to see a neurologist years ago.
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They said it was a three-year wait list, she said, screw that, which looking back, we're like, why didn't you get on the when you could?
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But you know, everything hindsight's 2020.
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So when when they said, Oh yeah, we can get you a neurologist, you know, next month, we're like, great, like we didn't even think about like what kind of neurologist we wanted, like or what what that would look like.
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We were just like, great, we can see a specialist that specializes in this.
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Like, this is what we've been wanting for so long.
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So me and Felicia at that time were not going to the appointments.
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Um, we didn't feel the need to, and so everything that we just didn't know that we could, right?
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Like up till that point, it was always like um dad takes mom, like or mom goes to her appointment by herself.
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Like, we never even we thought it would be a really big problem to say, like, can we FaceTime in?
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Can we join the appointment?
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And so we now know that that's completely fine, and we haven't had any doctor in any of these things not be nice to us and ask us, like, ask if we have any questions, uh like try to meet us.
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But to your point, like we were not on any of those early appointments.
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So I think she saw the first neurologist twice, twice or three times.
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And um, you know, he he was helpful in the sense like he did the PTAu test that got her the diagnosis.
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He um I would say that he created a false from from what we understood.
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Again, we weren't there, he also created a false sense of what to expect from that result because when mom and dad left that first neurology appointment, they literally told us, like, there's no chance she has Alzheimer's.
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So that's not very helpful.
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Yeah, I mean, and and and basically what he said, like he did like kind of like the PCP, like I think it was the slums test or some version of the slums test there, and basically said, it looks like you do have like mild because at that point he was also looking at the MRI that she did from that they completed and the neuropsychologist um test.
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And so he was looking at at both of those, and he said, you know, I do see that there is some mild cognitive decline.
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Um, and so like that we can definitely diagnose, but like I really just don't think it's Alzheimer's, like you're really young, like you're you're functioning fine.
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Like, we'll do this this P Tau test because it just came out, it was it had only been out for a month, but like really I wouldn't worry about it.
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We're just doing it as like a formality.
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Um, and like you said, like basically it's like like told them like it's not even like it's so rare that it would come back as positive.
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And then the next day it was off the charts.
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Well, it's interesting because I think that's another frustrating part about one being far away.
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But I I think this is true whether you're in the same town in the same house or across the country, is um trying to find out what was said at appointments that you weren't at.
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Yeah, right.
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Like again, we don't really know what was said, but I I do remember that when we got on the phone with my mom that night after she had seen the neurologist that day, you know, we asked them, like, how did it go?
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Like, what did you guys do?
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And they said, Yeah, we, you know, we talked, we did the slums test, which was something that that doctor did every time he saw mom.
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Um, he looked at the MRI, like showed her the MRI, they talked about the MRI.
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And then, like, she said it like an afterthought, like, well, yeah, and then he took blood work.
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And I I said to her, What did he take blood work for?
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And she's like, Well, he just took blood work.
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And I said, I don't even think they even explained what they was taking blood work for.
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He said, We'll do a little blood test while you're here, I think is what he said.
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That's what we were told that he said, but I have a hard time believing that because, and this is where it gets really tricky, right?
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It's like, what it did that happen?
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Like, maybe it totally did.
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Maybe he like really downplayed it, minimized it.
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But to me, it seems like to take a new blood test to find out unequivocally if a person has Alzheimer's, you'd kind of think they would be prepped for that a little bit more.
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And in our case, whether mom was a one-off or not, mom and dad did not leave that appointment thinking that it was going to be anything.
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In fact, like we got in a pretty heated discussion with dad about about that and what to expect.
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And um, I think we already been over this in our last episode about like actually getting to the diagnosis.
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But I do think this is an important part of the piece of it because I do think having a doctor who can explain to you exactly what is happening, explain to you their thought process is a really important part of something that was important for us to feel like they were taking care of mom.
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And based on what we had heard, you and I had heard from that appointment, I think right away we were like, what is wrong with this doctor?
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Like, what is we didn't feel like the right care was being given, at least not that met our expectations to make us feel comfortable.
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Well, that first doctor's appointment, like I didn't really have any expectations.
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Like, again, we weren't there.
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I didn't really think much of it.
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It wasn't until we got the results back and he called mom to tell her that I was like, what is we we need to find somebody else?
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Because, you know, I'm sure he like he he's like from my understanding, like on the age of retiring.
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So he, I'm sure he's done this a lot of times, told a lot of people they have Alzheimer's.
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But it was like the bedside banner of which it came down to that we really don't like.
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Like he called her and basically said, like, yep, you have Alzheimer's, there's no cure, good luck.
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And she was already in such a fragile stage because we had already seen the results and and broke the news to her.
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Um, but like to me, like no doctor should ever say, like, this is the end, good luck.
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Like, yes, Alzheimer's does not have a cure.
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It is not, it is not something that like you can, you know, take some drugs and from fix.
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Yeah, but it doesn't mean that it's you need to just go lay in bed and be depressed and and accept your fate.
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Like, there are things you can do, which we'll go into at a later point.
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But he they continued seeing, we continue seeing him because as we know, like it is such a long wait to get to a neurologist, and we didn't want to lose a neurologist.
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But it was important to me to find somebody uh to all of us, really, to find somebody that was going to have better bedside manner and more knowledge.
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Because he also didn't he he said he doesn't believe in functional medicine, he doesn't believe in any of the drugs that are out right now.
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Like he would he wouldn't even like give her the options if she wanted to do that.
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Like we wanted a neurologist that was gonna know the options and give mom the options, right?
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To get to provide the options, say, here's your informed information about what to expect from each of these things, and then it's up to you to decide what's best for you.
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And that absolutely did not happen through that first neurologist.
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And again, you know, to be fair, like you and I never met him, we were never on a call with him, like we never did an appointment.
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But I think we knew based on what those outcomes were, what was being presented, that it wasn't in line with what we were looking for.
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So I would say within like within two or three weeks of the diagnosis, like you had already gone back to the PCP and asked for a referral to a new neurologist.
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It was um her, yes.
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But how we came to to who the neurologist was or where was actually through her um psych psychiatric uh physician.
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Yeah, they really recommended this this new neurologist through UC Health, who who she sees now.
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And they said like it's a really long wait time, but like they're they're great.
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And and like the research that I'd done, like they do clinical rese studies there.
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I was like, this is exactly what we're in line with what we're doing.
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Like they're gonna know cutting edge medicine, they're gonna know like if they have a long wait, like they probably have a good um rapport with their with their patients.
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And so I remember calling UC Health and they said that you have to get on the wait list the first of the following month for six months, and so I think it was like last July or August, like shortly after all this.
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Um, and they said, Okay, February something is our first appointment.
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I said, done, whatever time, and yeah, just get us in.
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Yeah, just get us in.
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And and you couldn't go to that appointment, but I was able to be there.
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And I will say everything that I would have expected a neurologist to do was 100% done during that appointment.
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Like, um, from being open to my attending via FaceTime to honestly just spending a lot of time, like there was no pressure, there was no like get in, get out, like try to get this done, like rush information at you, slowed down, talk to mom a lot about like, did she have any brain injuries growing up?
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Did she, what was her career path like?
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What is her exercise routine like?
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How does she feel when she's um hydrated?
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How is she with her sleep?
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Are there any sleep disorders that she has?
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Like she she went into everything, and then and then she took a step back and really started to explain her perspective from like, um, you know, do you do you guys understand what dementia is?
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And she explained, like, we won't go into the whole thing now, but she talked a lot about the difference between like having the early stages of Alzheimer's and then what that part crosses into dementia.
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She talked and explained a lot about like what's the difference between like mild cognitive issues versus like moderate cognitive issues.
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And, you know, we even asked her, like, you know, are we just gonna do a slums test each time with you?
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And for her, the answer was no.
00:20:41.519 --> 00:20:58.400
And and that was actually, it's sorry, it's worth going back and saying that when my in that time that we were waiting to get to see the new neurologist that we were wanting to see, mom had gone back and had a second appointment with the previous, the prior neurologist.
00:20:58.720 --> 00:21:06.319
And they had done the slums test again, and I think mom's score went down like another two points or something.
00:21:06.720 --> 00:21:10.079
And that was something that our dad was like, oh, she's getting worse.
00:21:10.240 --> 00:21:12.640
The slums test is going down each time.
00:21:12.960 --> 00:21:16.559
And I could see why anyone would think that's the case.
00:21:16.720 --> 00:21:31.680
If you're being told, here's the measure of how well your cognitive health is doing, this is the test that we're gonna do, you would definitely assume that if you come back a couple months later and it's down, that the um issues are getting worse.
00:21:32.319 --> 00:21:41.119
This neurologist, and clearly each neurologist has their own perspective, which again is why it's important for you to know what's out there and what works best for you.
00:21:41.359 --> 00:21:45.039
This neurologist was like, I don't really use that as a measure.
00:21:45.200 --> 00:21:50.400
I use more of how listening to you, how are you living with this disease?
00:21:50.559 --> 00:21:59.680
What is, how are you dealing with being able to organize your medicine, with taking care of yourself, with showering, with eating, you know, with driving, with taking care.
00:22:00.160 --> 00:22:04.960
Of your pets, like how are you dealing with your normal everyday life?
00:22:05.200 --> 00:22:11.279
Is what I'm gonna use as the measurement of how things are going with your disease and or progressing with your disease.
00:22:11.440 --> 00:22:14.000
And I I thought that was really important.
00:22:14.799 --> 00:22:15.440
Yeah.
00:22:15.759 --> 00:22:26.240
And like she also, um, and again, I wasn't there, but from what you told me and everything that happened, was able to give us options for medications, therapies.
00:22:26.319 --> 00:22:29.039
Do you want to go into that a little bit and what she Yeah, absolutely.
00:22:29.200 --> 00:22:46.400
So, first of all, she already said that the two pills that my mom had been on that were prescribed by her psychiatric nurse practitioner were um great, great medications that do their job at slowing down uh the disease and keeping you stable.
00:22:46.640 --> 00:22:51.680
Um, she actually told us that, and again, this is not medical advice, right?
00:22:51.759 --> 00:23:05.200
We are not like really like naming the pills or like what they're doing, but at least what she had told our family in this appointment that for my mom is that being on those two pills can keep you stable for two years from when you start taking them.
00:23:05.440 --> 00:23:10.079
Because she really talked about cognitive decline as like a downward ramp.
00:23:10.160 --> 00:23:17.759
And what you want to try to do is get that line to plateau as much as possible, and that the pills that she was already on, she liked to see her on.
00:23:18.000 --> 00:23:27.440
Um, but then she actually talked about IV infusion therapies that um were potential options for mom.
00:23:27.920 --> 00:23:32.799
And um, you know, she she really slowed down and explained the whole thing.
00:23:33.119 --> 00:23:44.799
If you want to do this, like here's what the insurance covers, here's the debate about the drugs, this is why some people don't like them, here's why some people do, here's what the process will look like.
00:23:45.039 --> 00:23:50.720
Um, and you know, best case scenario looks like this, worst case scenario looks like this.
00:23:50.960 --> 00:23:58.720
If you, and she was, I also thought she was great because she said things like, if you don't, first of all, she was like, you do not have to decide today.
00:23:58.880 --> 00:24:03.759
This is something you should go home, talk to your family about, think about how this might affect you.
00:24:03.839 --> 00:24:13.039
Um, but if you want, we could at if you know you want to potentially explore this, we could at least get the blood work started, which is like the first step in finding out if you even are a candidate.
00:24:13.279 --> 00:24:27.359
And I thought that was that was great too, because I'm always looking for like really informed, kind of like I informed consent to proceed with different kinds of procedures or medications.
00:24:27.440 --> 00:24:33.759
And so I was really pleased with how much information and education she had provided for us.
00:24:34.240 --> 00:24:46.559
She also, um, before we left, she was like, the other thing that I want to make sure that we start doing for you is get you with uh memory therapy, which is basically like physical therapy but for your brain.
00:24:46.720 --> 00:24:53.519
And I was stunned when she even presented that as an option because I didn't even know that was a thing.
00:24:53.759 --> 00:24:54.880
I know, me too.
00:24:55.200 --> 00:25:03.680
Do you want to kind of talk a bit a little bit about like what um like how mom even responded once she started doing that?
00:25:04.000 --> 00:25:08.960
Yeah, it's really interesting because um well, two things.
00:25:09.119 --> 00:25:16.000
After her neuropsych test back in May of the fall previous year, they told her she should go to speech therapy.
00:25:16.160 --> 00:25:29.920
Um, which like my mom hasn't been diagnosed with like a specific variant of Alzheimer's, but from the research we've done, like it seems like it's more like the language um is getting affected first, which is why they're suggesting speech therapy and and and all this stuff.
00:25:30.240 --> 00:25:36.960
But she has been trying to get into a speech therapist still for over a year, and and like she can't even get on a wait list.
00:25:37.119 --> 00:25:42.079
And so this was such like a great solution that the neurologist came up with was merit memory therapy.
00:25:42.160 --> 00:25:43.440
They were able to get her in right away.
00:25:43.680 --> 00:26:02.960
And it's basically like I I was never at these appointments, but she did get send me a picture of the um like worksheets um after the appointments, and uh it sounds really silly, but it kind of is like a um it reminded me of like um kindergarten worksheets of like when you're learning your syllables, like okay, umbrella, how many syllables do you does it have?
00:26:03.039 --> 00:26:11.759
And they have to think umbrella, like it's using those those neurons that she still has to make those connections, and you have to say, like, okay, what does umbrella start with?
00:26:11.920 --> 00:26:15.680
Uh, uh, uh, and then ends with uh, you know.
00:26:15.920 --> 00:26:36.240
Um, but like then goes through like more things, and and I saw her confidence get so much higher after these um appointments because she felt like she can do it and she felt you know just was growing confidence, and I think it was it was just so great, and I I'm glad that she was able to to get into that.
00:26:36.480 --> 00:26:52.480
And I I I do I will say like me and Felicia have talked about like we try to do it with her via FaceTime and stuff, and you know, we we're using AI to our advantage, like we even told AI, like, hey, here's a worksheet, come up with a like a video game type thing.
00:26:52.559 --> 00:26:55.920
So I'll actually FaceTime her and it'll go through the process here.
00:26:56.000 --> 00:26:59.839
Um, because like I don't I'm not a I'm not a memory therapist.
00:27:00.400 --> 00:27:02.319
Um, I don't want to do it incorrectly.
00:27:02.640 --> 00:27:03.119
Yeah.
00:27:03.440 --> 00:27:12.880
Well, it's it's interesting though, like not to rush too far ahead, but what I was thinking about when you were describing that is like how great it's been for mom and like how important it has been.
00:27:13.039 --> 00:27:21.039
And so you can imagine my surprise when we're on a call the other day, the three of us, and mom's like, I don't want to go to memory therapy anymore.
00:27:21.200 --> 00:27:24.079
And I'm like, why would that be?
00:27:24.240 --> 00:27:28.640
Like, and it comes down to money and it comes down to insurance.
00:27:28.799 --> 00:27:43.039
And I will say, Yeah, you know, for a lot of people, resources and money are massive barriers to specialist to care, like just to care of different kinds.
00:27:43.279 --> 00:27:54.240
Um, a lot of people, like, this hasn't really been our family's experience, but I know people who will refuse to go to the doctor for years because they do not want to spend money on any of that.
00:27:54.400 --> 00:28:05.200
And so we're really lucky that like dad has been able to save enough that like these kind of options have been on the table for mom to pursue that.
00:28:05.279 --> 00:28:15.200
Um, but another challenge we've had, especially with mom who grew up with maybe some more like money issues, like really wants to make sure that she's safe and like not overspending ever.
00:28:15.359 --> 00:28:25.920
We've had a hard time sometimes convincing her to continue doing things that have cost money, whether it's the functional medicine doctor, whether it's the memory therapy, whether it's a certain test, whatever.
00:28:26.000 --> 00:28:28.799
Like she just gets really hung up on these things.
00:28:28.880 --> 00:28:32.319
And so maybe you can speak, like you have definitely shared.
00:28:33.039 --> 00:28:37.920
I'll just say it again, and I will always say this like you are the one who has done so much for mom.
00:28:38.240 --> 00:28:46.559
Like you have been instrumental in orchestrating a lot of really annoying logistics and details to find out how to take care of her.
00:28:46.720 --> 00:28:48.400
So, first of all, thank you.
00:28:48.720 --> 00:29:00.000
But I also need you to describe like what was that process even like to find memory care therapist who maybe would be better in like because you found out she the current memory therapist was out of network.
00:29:00.400 --> 00:29:01.759
Maybe you can speak to that a little bit.
00:29:02.079 --> 00:29:04.720
So it's really hard.
00:29:04.799 --> 00:29:06.799
And this is just my mom's experience.
00:29:06.880 --> 00:29:10.640
But anyone with early onset Alzheimer's may be going through the same thing.
00:29:10.880 --> 00:29:25.839
She my my dad retired because he's of retiring age, but my mom had to get private insurance because she doesn't qualify for um Medicaid or Medicaid money or whatever's the one that's at 65.
00:29:26.319 --> 00:29:29.839
Um and because she's and she's just a couple years short of that.
00:29:30.000 --> 00:29:39.519
So like now they had to go find a private insurance, and you know, insurance, this is is not a podcast talking about the the loopholes with insurance.
00:29:39.680 --> 00:29:52.640
But what I will say is like there's it's a it is a very big challenge for for anybody, especially in these situations where um insurance doesn't want to pay for things that they don't think is like medically necessary and and all this stuff.
00:29:52.799 --> 00:29:58.240
So um she was going to this memory therapist with my dad's insurance care, by the way.
00:29:58.559 --> 00:30:00.240
Okay, that's good too.
00:30:00.480 --> 00:30:08.880
Yeah, um, so she was going to this memory care with my dad's insurance at the time, but once she switched insurances, we got a uh claim saying this was denied.
00:30:09.119 --> 00:30:14.960
And of course, like I called, like it was gonna be like$900 for like this hour appointment, and we were like, oh my god.
00:30:15.039 --> 00:30:21.200
So we called them, they said, and they basically said, like, if you want to pay out of network, it's like$300 um pocket.
00:30:21.359 --> 00:30:22.319
Putting out of pocket, yeah.
00:30:22.400 --> 00:30:23.200
It'll be like$300.
00:30:23.440 --> 00:30:25.119
And my dad said, Okay, let's do it.
00:30:25.359 --> 00:30:33.519
But I think, like Felicia said, like, especially as this does disease is progressing, for some reason, like money is just a big trigger for my mom.
00:30:33.680 --> 00:30:40.160
And like anything that especially has to come with like her medical stuff, like she doesn't, like, she it just stresses her out so much.
00:30:40.319 --> 00:30:51.519
So we did say, like, okay, we can stop seeing this memory therapist, but we we have to see a new one, like this is very important, and it might seem silly in the moment, but like it's it's helping keep those neurons that you have.
00:30:52.319 --> 00:31:01.680
And so I had to work with United, um, which is like her private insurance, and basically say, like, who is in network for this memory therapy?
00:31:01.920 --> 00:31:04.319
So that way I can go to her neurologist and send a referral.
00:31:04.400 --> 00:31:06.000
So, very long story short.
00:31:06.079 --> 00:31:11.200
It took me hours to finally get that because it's not a typical Did you have to call or did you just look on it?
00:31:11.359 --> 00:31:11.759
I chatted.
00:31:13.039 --> 00:31:14.559
Yeah, I chatted with them.
00:31:14.799 --> 00:31:19.680
Um, and they got me one name of somebody 45 minutes away from her.
00:31:19.839 --> 00:31:24.720
And so I I went through the portal and told the neurologist, like, hey, like here's the situation.
00:31:24.799 --> 00:31:25.759
Can you send a referral?
00:31:25.839 --> 00:31:27.839
And they immediately responded and said, like, referral sent.
00:31:27.920 --> 00:31:30.640
So I do need to follow up on that probably Monday.
00:31:30.880 --> 00:31:36.319
But that's interesting too, though, like going back to what we said at the beginning about how the PCP refers everything out.
00:31:36.400 --> 00:31:41.440
But if it's something that like the neurologist is recommended, then the neurologist has to send the referral.
00:31:41.680 --> 00:31:44.799
So you do have to kind of keep everybody straight.
00:31:45.119 --> 00:31:45.440
Yeah.
00:31:45.599 --> 00:31:51.680
I'm sure the doctor could have, um the PCP could have maybe sent it out, but I don't know.
00:31:51.839 --> 00:31:54.960
Again, the original referral came from her.
00:31:55.119 --> 00:31:57.039
Um from yeah, from her.
00:31:57.200 --> 00:31:59.039
So I just wanted to keep it in that.
00:32:00.240 --> 00:32:02.160
Yeah, I think that's a really important part of it.
00:32:02.319 --> 00:32:06.240
You know, the thing that I found is like there's no silver bullet with this.
00:32:06.319 --> 00:32:16.400
Like, there's no one thing you're gonna do that's just gonna extend a person's cognitive health, make sure that they can never like live a long, healthy life, and like there's nothing you have to do.
00:32:16.559 --> 00:32:26.640
You know, it is funny, and I think it's really relevant to kind of to say there's no one thing you're gonna do that's gonna be the one big superpower here, right?
00:32:26.720 --> 00:32:32.960
Like, there's there's lots of little things that you can do and that you can look into.
00:32:33.359 --> 00:32:54.079
And so continuing to ask yourself, like, if you have a need or a gap, like continue to ask questions and don't be afraid to reach out, whether it's to the PCP, a neurologist, a your the nurse practitioner, and say, like, hey, we, you know, we feel like maybe therapy would be a good thing for for my mom.
00:32:54.160 --> 00:32:56.079
Like, do you have any recommendations?
00:32:56.319 --> 00:33:04.240
Um, for us, like my mom did start seeing a therapist early during when all of this had started, and she liked that therapist.
00:33:04.400 --> 00:33:08.160
It was, it was, they had a great personal rapport.
00:33:08.640 --> 00:33:19.599
But what we had found outside of from her care team is like there would also be a lot of commentary from my mom saying, like, I don't feel like I'm working through my trauma, I don't really feel like this is helping me.
00:33:19.759 --> 00:33:30.720
And then what we also noticed, especially after we had pursued the IV infusion therapy, and we decided like my mom wasn't gonna be a candidate, we weren't gonna pursue that anymore.
00:33:30.880 --> 00:33:38.720
Um, that there were a lot of issues my mom seems to be having with the fact that she has Alzheimer's, rightfully so.
00:33:38.880 --> 00:33:47.759
Like this is extremely traumatic, and um, she didn't really have the right therapist to help her deal with and process that part.
00:33:47.920 --> 00:33:49.839
And so that's another thing that we did.
00:33:50.000 --> 00:33:51.440
We were like, this isn't working.
00:33:51.599 --> 00:33:52.960
What else can we do here?
00:33:53.279 --> 00:33:58.799
Turns out there's therapists who specialize just in people that have Alzheimer's or dementia.
00:33:59.119 --> 00:34:02.319
Um, you want to speak to your conversation with the one?
00:34:02.960 --> 00:34:13.280
Yeah, so um, I originally started by calling the Alzheimer's Association, which at the end of every episode I always say like it's a free resource for situations like this.
00:34:13.360 --> 00:34:16.400
Like if you don't know where to begin, they can they can put you in the right direction.
00:34:16.480 --> 00:34:20.559
So I called the Colorado Association and said, like, hey, like my mom sees a therapist right now.
00:34:20.639 --> 00:34:26.719
We really want to get her into somebody who specializes in Alzheimer's or dementia who can help navigate coping with that.
00:34:26.960 --> 00:34:31.280
And they she gave me, she emailed me back like three or four different options.
00:34:31.440 --> 00:34:32.559
And I looked them all up.
00:34:32.719 --> 00:34:44.639
Some of them, um, like it said, like they moved to Maine or like other places, and like two of them I reached out to said, like, they're at a wait list capacity, they're not even taking anybody on the on the wait list because I think it's a very, very niche market.
00:34:45.039 --> 00:34:54.719
And um, and one person that I did look at though that said that they're not taking anybody, but like feel free to reach out and she could provide more recommendations.
00:34:54.960 --> 00:34:59.519
And so that's what I did is I reached out to her, she emailed me back, a few other options.
00:34:59.679 --> 00:35:05.119
I reached out to these other people, and one of the girls um it was great.
00:35:05.199 --> 00:35:23.360
Like she set up a like a little consultation with me because I really wanted to, I wanted it's not that I wanted to vet the therapist, but like I I wanted to see if it's a right fit because my mom like no longer has the ability to do those, those like little intake um questionnaires, yeah.
00:35:23.440 --> 00:35:25.039
Like, yeah, like I wanted to fill her in.
00:35:25.199 --> 00:35:26.639
Like, here's here's what we're experiencing.
00:35:26.800 --> 00:35:28.400
Do you think this this would be a good fit?
00:35:28.480 --> 00:35:31.119
Like, is this something like I want to make sure it was a good fit on both sides?
00:35:31.360 --> 00:35:35.440
And we've been talking for like 40 minutes about like her experience.
00:35:35.519 --> 00:35:38.559
Like, she used to work, I think it was neuropsychology evaluations.
00:35:38.639 --> 00:35:43.440
Like, my mom originally did to get the diagnosis, and she's worked in um you know, assisted a living.
00:35:43.519 --> 00:36:00.239
Like a lot of her patients are older because most people who have dementia and Alzheimer's are older, but um, she does think that it would be uh be a good fit, but she's also at a wait list, and it was luckily only about two months, so she should be starting that um in July.
00:36:00.639 --> 00:36:17.360
And it unfortunately, with all of the therapists that I did see that do specialize in it, none of them take um insurance, so it is out of pocket, but I do think it is worth it to get your loved one like the support that they need because it is.
00:36:17.679 --> 00:36:26.400
I mean, I can't even imagine what it's like being being told you have Alzheimer's, and especially in my mom's case, like it was her worst nightmare like ever for her whole life.
00:36:26.559 --> 00:36:28.960
Um, she said she always she never wants to get Alzheimer's.
00:36:29.119 --> 00:36:31.440
So um, it's true.
00:36:31.519 --> 00:36:46.559
The other thing because I wasn't on that call, and I I would also just say on the record, like, you did vet that therapist, and it's a good thing you vetted that therapist because it is okay to say, if I'm about to spend money with you, like I want to make sure that you're gonna fit my needs.
00:36:46.719 --> 00:36:57.440
And I would say that I think for a lot of people, maybe even more so like women, like we feel at times like I don't deserve to ask those questions.
00:36:57.519 --> 00:36:59.039
I just need to take whatever I get.
00:36:59.199 --> 00:37:09.599
Like, if this is the doctor offered to me, like if you're if you're hearing one like through thread of this podcast, it's like never accept that as like the bare minimum or like just what you have to deal with.
00:37:09.679 --> 00:37:16.079
Like, you can always say no, you can end therapies, you can change them, you can pursue other doctors.
00:37:16.320 --> 00:37:18.960
Um, so sorry, get off my high horse on that.
00:37:19.039 --> 00:37:24.719
But I will also say that once you called and you, of course, you call me and tell me about everything that you learned.
00:37:24.880 --> 00:37:34.559
Um, you also said that she doesn't just stop at the patient, that she also uh like can bring in the the co the other caretaker, the primary caretaker.
00:37:34.639 --> 00:37:44.159
And like we really liked that because we were like, yeah, like the the complications of having an Alzheimer's diagnosis on the effect on the family.
00:37:44.320 --> 00:38:00.320
And as much as um actually, I I'm remembering like a TikTok that I once saw that said, like, when one person gets diagnosed with Alzheimer's, like really a family gets diagnosed with Alzheimer's, and it's because you your life is forever affected too.
00:38:00.480 --> 00:38:02.800
And that is a hundred percent true of our dad.
00:38:02.880 --> 00:38:13.599
And like to know that if they need to go and like talk about a certain topic or if she can help translate, here's what Rose is actually going through, and this is how you can actually help her.
00:38:13.679 --> 00:38:18.239
Like, the fact that we can have that as a resource will be invaluable for our family.
00:38:18.559 --> 00:38:19.599
Yeah, that's so true.
00:38:19.760 --> 00:38:25.599
I already forgot about that, and not only that, one thing I really like too is like she doesn't just stop there.
00:38:25.760 --> 00:38:38.000
Like, she is a because she has so much connection through her previous experience, like she knows um memory care facilities if it ever got to that point, which I know is like the la like the very last thing on our list.
00:38:38.239 --> 00:38:54.000
But it's good to know that like I mean, there's there's so many options out there to have somebody that you would trust that can vet places, or or you know, she might be um uh a good resource for a social worker, which I know we're we're we're wanting to get into as well.
00:38:54.480 --> 00:38:56.559
Or a geriatric care manager.
00:38:56.800 --> 00:38:58.480
Yeah, yeah.
00:38:58.800 --> 00:39:07.679
Yeah, those are two the the reason we bring those up and we don't have a lot to say about them is like we we're still learning ourselves, like what's even available out there.
00:39:07.920 --> 00:39:24.800
And again, what's a little bit unique about our story is like our mom is still in the early stages of the disease, and so we hope we have many, many, many years left where we can slow down her decline and and and not even have to talk about like any kind of assisted living or anything like that.
00:39:24.880 --> 00:39:34.960
Like we know that that's her, she never wants us to do that, and so it's um it's been hard to even feel like we're like we're not anywhere close to being able to plan for that.
00:39:35.199 --> 00:39:53.519
But one of the things that I had um recently learned about is like there are specialists, whether it's like a social worker or like um there's some like geriatric care facilities that like will actually come to your house and do like an a full day of like assess it's an assessment.
00:39:53.679 --> 00:39:55.760
Like, how are you doing living on your own?
00:39:55.920 --> 00:40:12.400
Are there any recommendations for like like one of the biggest things that we have like just if we're being honest, like struggled with our our dad and our mom is like helping translate to my dad like what executive functioning things are too much for my mom?
00:40:12.559 --> 00:40:23.920
So like he'll just assume she can just order pills or she can just make a recipe for friends coming over because she always could do that, or she can go clean all three bathrooms in their house.
00:40:24.239 --> 00:40:29.119
What we know is like there's that's a lot of executive functioning, right?
00:40:29.199 --> 00:40:42.880
There's you have to know what order to do things in, you have to know how much time to spend on things, and like all of that is an extreme cognitive uh strain, and she does not have that accessible the way that she used to.
00:40:43.119 --> 00:40:48.320
And so we were like, you know, we can say this to my dad all day long.
00:40:48.639 --> 00:41:02.400
He doesn't seem to be able to hear it from us, but we do feel like he would have a much easier time hearing it from somebody who could explain, hey, I did this assessment with her, here's where she's doing great, here's where she needs additional help.
00:41:02.559 --> 00:41:17.920
Um, so we like with many things, like one of the challenges of this entire process of trying to build out your care team, um, especially with professionals, is you've said it a lot, wait list, but sometimes people are and companies are so busy that they won't even call you back.
00:41:18.079 --> 00:41:23.280
And so for the past like month, we've been trying to look into this and we haven't been able to find somebody to call us back.
00:41:23.519 --> 00:41:27.360
So we're definitely living that struggle too.
00:41:27.599 --> 00:41:28.639
But I don't know.
00:41:28.719 --> 00:41:33.119
I I do think that overall we have a pretty robust care team.
00:41:33.199 --> 00:41:35.679
We're really, really fortunate in that way.
00:41:35.840 --> 00:41:45.039
Um, I know that not everybody has that, but I do hope that anybody listening today has felt like maybe maybe you didn't know many of these things either.
00:41:45.119 --> 00:41:53.599
And so just learning what you don't know is everything when it comes to like working your way through this terrible disease.
00:41:55.119 --> 00:41:56.400
Yeah, well said.
00:41:57.199 --> 00:41:59.760
All right, well, we'll talk to you next week.
00:41:59.840 --> 00:42:07.920
We're gonna have my mom on to dive a little bit deeper into the functional medicine portion and how she feels like it's been going and diving a little bit into that.
00:42:08.000 --> 00:42:10.400
So if you're interested in that, tune in next week.
00:42:10.719 --> 00:42:11.599
Bye-bye.
00:42:12.000 --> 00:42:18.880
If this episode resonated with you, or if someone you love is navigating an Alzheimer's diagnosis, please know you don't have to fight it alone.
00:42:19.039 --> 00:42:24.880
The Alzheimer's Association is a free 24 7 resource available to anyone who needs their support.
00:42:25.119 --> 00:42:29.760
Whether you're newly diagnosed, deep in caregiving, or just trying to understand what comes next.
00:42:29.920 --> 00:42:35.599
You can reach them anytime at 1 800 272 3900.
00:42:36.079 --> 00:42:40.800
You can also reach them online at alz.org.
00:00:00.080 --> 00:00:02.000
Welcome to Conversations Through Alzheimer's.
00:00:02.080 --> 00:00:04.400
I'm Amber Marty and I'm Felicia Wood.
00:00:04.559 --> 00:00:10.640
We're sisters and daughters of Rosemary Marty, diagnosed with Alzheimer's in June of 2025.
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We're documenting her journey as it happens and we're sharing every resource we find along the way.
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This is her story and ours.
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Thank you so much for joining us today.
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Today we're going to be talking about the importance of knowing what your options are when it comes to building out your medical care team.
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What we've found over the last year since our mom was diagnosed with early onset Alzheimer's is that it's easy to get lost in the medical system, especially if you don't know what else is out there.
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You don't know what to expect from the doctor or the specialist that you're working with.
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And then more importantly, like we we say this a lot, like you don't know what you don't know.
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And so what we've had to do is to do a lot of research, um, talking to other people, Googling, working with AI even, like trying to figure out like what are other resources out there that might be able to help us.
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And we've we've found a lot of interesting things along the way.
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So we want to share a little bit about what we've done, um, but also maybe some things that we haven't done yet or haven't explored as much of.
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Um and that said, like I will also always start by saying, like, no single family's journey is the same.
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Every single person, every single diagnosis is different.
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And your own approach to medicine, some people are like really like more things that people might other people might consider unconventional.
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Um, some people really like to stick with a PCP, that's it.
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Very little specialties.
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Some people want to go like supernatural and only work with like a naturopath or nutritionist and and things like that.
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Um, there's there's no one right way.
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It's just a matter of knowing what your values are, um, finding what makes you feel like you're seeing either some sort of stability or progress or at least support in the person that you love.
00:02:08.319 --> 00:02:15.280
So um we want to just kick things off and talking a little bit about how we started to build up mom's medical care team.
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Yeah, so she sees a PCP right now, like most people do.
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And um he has been great at being the advocate for her, which is I think so important for a PCP.
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You know, she's been trying to tell, she used to have a different PCP that she would try to tell that like something is off, like I I'm having problems with my language or I'm having these these symptoms, and and she just kind of brushed it off as like, you know, at the time she was in her late 50s, like Rose, you're just getting getting old, like I know it's challenging.
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And and she accepted that because that's what her PCP said at the time.
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That PCP left, and when she started seeing the new one, and we start as a family started to see more of the symptoms and advocating that with her.
00:02:57.439 --> 00:03:02.719
Um, he was really the person that moved the needle on the diagnosis.
00:03:02.879 --> 00:03:10.319
Like he's the one that created the neuropsych evaluation, and then from there got the neurology referral.
00:03:10.560 --> 00:03:20.159
And I think it's just so important to get a PCP that will advocate for you because they're without them, like unfortunately with the insurance and stuff, like you're kind of stuck.
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So if you do have a PCP that's just brushing you off, like get a second opinion, see if there's somebody else in your network that would be willing to meet with you and your family.
00:03:29.120 --> 00:03:30.240
It's it's really important.
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Like, I think throughout this whole episode, we talked about like of getting the right people that will advocate for you and your family and meet you where you're at.
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Well, I think it's really important to um consider also like how age plays into where you're gonna end up falling in that process, right?
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Because, like, to your exact point, mom was in her late 50s, she's seeing a PCP.
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Remember, PCPs don't specialize in the difference between somebody who's stressed, somebody who has depression anxiety, somebody who's older, and they just assume most people don't have Alzheimer's in their 50s.
00:04:06.159 --> 00:04:12.400
Like they just take the base level of like what is they generally see, and because of that, we'll sometimes miss things.
00:04:12.560 --> 00:04:20.399
So, what happens a lot is like it's very common with Alzheimer's and dementia to go very undiagnosed until it's severe.
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And what we found through this process is there are options out there, um, whether it's medications or lifestyle changes that can really take that, you know, decline that is maybe happening to you, start to stretch out that line so that you can have a lot more good years.
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But you can't do that if you don't know that something is actually going on.
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And so for our mom, like it was to your point, like the PCP is definitely been kind of like that central person to kind of say, okay, let's get you with this test, let's get you with the neurology referral.
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They also the person that you reached out to and said, we want a second opinion about the neurologist, and they got us into a second neurologist.
00:05:01.839 --> 00:05:14.240
Like he's been the one to kind of facilitate us being able to move and operate in different ways, which I didn't really understand that benefit until we started working through that process.
00:05:14.480 --> 00:05:24.560
Another thing that's really important to know is like if you're starting with your PCP, like you are definitely more in like what I kind of call like Western medicine territory.
00:05:24.639 --> 00:05:37.920
Um, a very traditional approach to medicine, to uh symptom management, symptom management exactly, your options for like pharmaceutical medicines, that sort of thing.
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And it can cause a little bit of a rift if you are also wanting to look outside of that and look more towards like a functional medicine doctor or an integrative health specialist.
00:05:50.160 --> 00:05:54.480
Um, they can kind of sometimes be at conflict with each other.
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And for us, we actually, as soon as my mom got her diagnosis, I felt really strongly that I wanted her to see a functional medicine doctor.
00:06:04.079 --> 00:06:22.480
And what you should know about a functional medicine doctor is a functional medicine doctor is a licensed uh MD, uh, somebody who is completed conventional medical training the same way other doctors have, um, but they understand to look for the root cause of a disease rather than just the symptom management.
00:06:22.720 --> 00:06:33.839
And so they get they will go into investigating things like inflammation, gut health, hormonal imbalances, nutrition uh deficiencies, and mitochondrial function.
00:06:34.959 --> 00:06:35.839
Toxins.
00:06:36.160 --> 00:06:37.519
Oh, yeah, toxins.
00:06:37.680 --> 00:06:40.000
Um, and they use way more advanced testing.
00:06:40.160 --> 00:06:50.399
In fact, the reason that I knew about functional medicine doctors is because my husband has gone through some illnesses and had to work with a functional medicine doctor to help his health.
00:06:50.560 --> 00:07:01.519
And we found out from working with um his functional medicine doctor that like the way that they look at labs is completely different than most other doctors uh look at labs.
00:07:01.600 --> 00:07:07.040
Like you get your report and you you see like the the bar that says like this range is normal.
00:07:07.279 --> 00:07:26.319
Um our functional medicine doctor, I can't say that all would, but our functional medicine doctor said, yeah, that's like a really broad generalization, and usually even those edges of like what's considered within normal range is not normal or is not uh well functioning.
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And so it's really important, it was important for us, um, for me personally, to see what a functional medicine doctor would see in my mom's workup.
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Um, and so that was something that I would say for the most part, the other doctors have been pretty supportive of.
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Um, they don't work together like super closely, but if uh the PCP or a neurologist runs blood work, we send it over to the functional medicine doctor, um, vice versa.
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Like they they kind of want to know what each other is saying or or doing.
00:08:02.959 --> 00:08:14.079
Um, but there also have been times where uh one of the neurologists might take a look at the kind of supplements mom is on, and like you'll get over and over.
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There's no scientific proof that that has anything to do with uh the helping on this.
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And the truth is like they just don't understand enough about how different supplements they also don't do clinical research on functional medicine at this time.
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So like they they're trained in looking at clinical research from like the Western medicine perspective, and so they can't speak to it, so they can't Right.
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So they're not gonna try to give you it what they feel like is in their opinion, like false hope.
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And and I get that because I do think a lot of people take maybe supplements or vitamins with like as this idea of like it's gonna be a a miracle, right?
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Like, oh, I'll take this fish oil supplement and like that'll make my brain work forever.
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It's like you do have to be really um practical about what each of these it's kind of like what we're talking about here.
00:09:07.200 --> 00:09:10.639
You have to know what each of these doctors or specialists are doing for you.
00:09:10.799 --> 00:09:16.639
Same thing with uh the kind of things you're gonna put into your body, you have to know what those things are doing for you as well.
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And one thing that I've liked about the functional medicine doctor, which we'll go into more in a later episode, but is just also looking at the what are you putting into your your mouth with your uh food?
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How much are you sleeping?
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Like looking at that bigger picture, which um I will say, like our experience with the neurologists, like they sometimes ask those questions, but like it's not usually that like really holistic view, which is something that I thought would be important to bring to the puzzle.
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But that said, a lot of people don't feel that way, and so I do think it's really important that you consider if you're on on this journey, like what will make me feel supported?
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And and that goes for like me, the maybe the person with the illness or the disease, but also what is your perspective that you feel like is important from the caretaker too, right?
00:10:07.440 --> 00:10:19.039
Like, and and hopefully in our case, we're really lucky because mom has been very accepting of almost anybody that we've encouraged her to go see, but not maybe not everyone will feel that way.
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Speaking of like the parts that, like, maybe there's been some differences of opinion.
00:10:23.440 --> 00:10:34.559
I feel like for our family, the only thing that's caused like a little bit of a riff is like sometimes our dad can be a feel like a little dismissive of the functional medicine stuff.
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Like his perspective was kind of like, how long is she gonna be on all these supplements for?
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You know, like what is the end of this look like?
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Like, is this even helping?
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And again, we'll get into that a later at a later time.
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But then the only other one was maybe at least so far, was around the neurologist, which I know you have some thoughts on that.
00:10:56.320 --> 00:10:56.960
Yeah.
00:10:57.279 --> 00:11:04.559
So um, when her PCB got her into a neurologist, we didn't like I mean, my mom tried to see a neurologist years ago.
00:11:04.639 --> 00:11:10.080
They said it was a three-year wait list, she said, screw that, which looking back, we're like, why didn't you get on the when you could?
00:11:10.240 --> 00:11:12.799
But you know, everything hindsight's 2020.
00:11:12.960 --> 00:11:21.200
So when when they said, Oh yeah, we can get you a neurologist, you know, next month, we're like, great, like we didn't even think about like what kind of neurologist we wanted, like or what what that would look like.
00:11:21.279 --> 00:11:24.159
We were just like, great, we can see a specialist that specializes in this.
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Like, this is what we've been wanting for so long.
00:11:26.399 --> 00:11:30.159
So me and Felicia at that time were not going to the appointments.
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Um, we didn't feel the need to, and so everything that we just didn't know that we could, right?
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Like up till that point, it was always like um dad takes mom, like or mom goes to her appointment by herself.
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Like, we never even we thought it would be a really big problem to say, like, can we FaceTime in?
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Can we join the appointment?
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And so we now know that that's completely fine, and we haven't had any doctor in any of these things not be nice to us and ask us, like, ask if we have any questions, uh like try to meet us.
00:12:02.000 --> 00:12:04.879
But to your point, like we were not on any of those early appointments.
00:12:05.360 --> 00:12:09.840
So I think she saw the first neurologist twice, twice or three times.
00:12:10.159 --> 00:12:16.399
And um, you know, he he was helpful in the sense like he did the PTAu test that got her the diagnosis.
00:12:16.639 --> 00:12:21.440
He um I would say that he created a false from from what we understood.
00:12:21.600 --> 00:12:35.600
Again, we weren't there, he also created a false sense of what to expect from that result because when mom and dad left that first neurology appointment, they literally told us, like, there's no chance she has Alzheimer's.
00:12:35.919 --> 00:12:37.759
So that's not very helpful.
00:12:38.159 --> 00:12:58.480
Yeah, I mean, and and and basically what he said, like he did like kind of like the PCP, like I think it was the slums test or some version of the slums test there, and basically said, it looks like you do have like mild because at that point he was also looking at the MRI that she did from that they completed and the neuropsychologist um test.
00:12:58.879 --> 00:13:07.519
And so he was looking at at both of those, and he said, you know, I do see that there is some mild cognitive decline.
00:13:07.679 --> 00:13:16.639
Um, and so like that we can definitely diagnose, but like I really just don't think it's Alzheimer's, like you're really young, like you're you're functioning fine.
00:13:16.799 --> 00:13:22.559
Like, we'll do this this P Tau test because it just came out, it was it had only been out for a month, but like really I wouldn't worry about it.
00:13:22.639 --> 00:13:24.320
We're just doing it as like a formality.
00:13:24.480 --> 00:13:31.440
Um, and like you said, like basically it's like like told them like it's not even like it's so rare that it would come back as positive.
00:13:31.759 --> 00:13:34.000
And then the next day it was off the charts.
00:13:34.320 --> 00:13:38.720
Well, it's interesting because I think that's another frustrating part about one being far away.
00:13:38.799 --> 00:13:48.000
But I I think this is true whether you're in the same town in the same house or across the country, is um trying to find out what was said at appointments that you weren't at.
00:13:48.080 --> 00:13:48.639
Yeah, right.
00:13:48.720 --> 00:14:01.919
Like again, we don't really know what was said, but I I do remember that when we got on the phone with my mom that night after she had seen the neurologist that day, you know, we asked them, like, how did it go?
00:14:02.000 --> 00:14:02.960
Like, what did you guys do?
00:14:03.120 --> 00:14:11.519
And they said, Yeah, we, you know, we talked, we did the slums test, which was something that that doctor did every time he saw mom.
00:14:12.080 --> 00:14:17.120
Um, he looked at the MRI, like showed her the MRI, they talked about the MRI.
00:14:17.279 --> 00:14:21.360
And then, like, she said it like an afterthought, like, well, yeah, and then he took blood work.
00:14:21.519 --> 00:14:26.320
And I I said to her, What did he take blood work for?
00:14:26.480 --> 00:14:28.559
And she's like, Well, he just took blood work.
00:14:28.799 --> 00:14:33.200
And I said, I don't even think they even explained what they was taking blood work for.
00:14:33.360 --> 00:14:36.639
He said, We'll do a little blood test while you're here, I think is what he said.
00:14:37.120 --> 00:14:43.759
That's what we were told that he said, but I have a hard time believing that because, and this is where it gets really tricky, right?
00:14:43.840 --> 00:14:46.879
It's like, what it did that happen?
00:14:46.960 --> 00:14:48.080
Like, maybe it totally did.
00:14:48.159 --> 00:14:51.039
Maybe he like really downplayed it, minimized it.
00:14:51.120 --> 00:15:01.279
But to me, it seems like to take a new blood test to find out unequivocally if a person has Alzheimer's, you'd kind of think they would be prepped for that a little bit more.
00:15:01.519 --> 00:15:10.480
And in our case, whether mom was a one-off or not, mom and dad did not leave that appointment thinking that it was going to be anything.
00:15:10.639 --> 00:15:16.799
In fact, like we got in a pretty heated discussion with dad about about that and what to expect.
00:15:16.879 --> 00:15:22.320
And um, I think we already been over this in our last episode about like actually getting to the diagnosis.
00:15:22.480 --> 00:15:40.559
But I do think this is an important part of the piece of it because I do think having a doctor who can explain to you exactly what is happening, explain to you their thought process is a really important part of something that was important for us to feel like they were taking care of mom.
00:15:40.960 --> 00:15:49.360
And based on what we had heard, you and I had heard from that appointment, I think right away we were like, what is wrong with this doctor?
00:15:49.519 --> 00:15:57.759
Like, what is we didn't feel like the right care was being given, at least not that met our expectations to make us feel comfortable.
00:15:58.000 --> 00:16:02.080
Well, that first doctor's appointment, like I didn't really have any expectations.
00:16:02.159 --> 00:16:03.279
Like, again, we weren't there.
00:16:03.360 --> 00:16:04.720
I didn't really think much of it.
00:16:04.879 --> 00:16:12.879
It wasn't until we got the results back and he called mom to tell her that I was like, what is we we need to find somebody else?
00:16:13.120 --> 00:16:19.919
Because, you know, I'm sure he like he he's like from my understanding, like on the age of retiring.
00:16:20.000 --> 00:16:23.759
So he, I'm sure he's done this a lot of times, told a lot of people they have Alzheimer's.
00:16:24.080 --> 00:16:29.679
But it was like the bedside banner of which it came down to that we really don't like.
00:16:29.759 --> 00:16:34.240
Like he called her and basically said, like, yep, you have Alzheimer's, there's no cure, good luck.
00:16:34.639 --> 00:16:39.840
And she was already in such a fragile stage because we had already seen the results and and broke the news to her.
00:16:40.320 --> 00:16:46.240
Um, but like to me, like no doctor should ever say, like, this is the end, good luck.
00:16:46.399 --> 00:16:49.120
Like, yes, Alzheimer's does not have a cure.
00:16:49.440 --> 00:16:54.399
It is not, it is not something that like you can, you know, take some drugs and from fix.
00:16:54.720 --> 00:17:00.879
Yeah, but it doesn't mean that it's you need to just go lay in bed and be depressed and and accept your fate.
00:17:00.960 --> 00:17:04.000
Like, there are things you can do, which we'll go into at a later point.
00:17:04.240 --> 00:17:13.440
But he they continued seeing, we continue seeing him because as we know, like it is such a long wait to get to a neurologist, and we didn't want to lose a neurologist.
00:17:14.160 --> 00:17:23.279
But it was important to me to find somebody uh to all of us, really, to find somebody that was going to have better bedside manner and more knowledge.
00:17:23.440 --> 00:17:30.000
Because he also didn't he he said he doesn't believe in functional medicine, he doesn't believe in any of the drugs that are out right now.
00:17:30.079 --> 00:17:33.440
Like he would he wouldn't even like give her the options if she wanted to do that.
00:17:33.519 --> 00:17:39.039
Like we wanted a neurologist that was gonna know the options and give mom the options, right?
00:17:39.279 --> 00:17:51.039
To get to provide the options, say, here's your informed information about what to expect from each of these things, and then it's up to you to decide what's best for you.
00:17:51.599 --> 00:17:56.079
And that absolutely did not happen through that first neurologist.
00:17:56.240 --> 00:18:03.519
And again, you know, to be fair, like you and I never met him, we were never on a call with him, like we never did an appointment.
00:18:03.920 --> 00:18:10.720
But I think we knew based on what those outcomes were, what was being presented, that it wasn't in line with what we were looking for.
00:18:10.880 --> 00:18:22.799
So I would say within like within two or three weeks of the diagnosis, like you had already gone back to the PCP and asked for a referral to a new neurologist.
00:18:23.200 --> 00:18:25.039
It was um her, yes.
00:18:25.279 --> 00:18:32.559
But how we came to to who the neurologist was or where was actually through her um psych psychiatric uh physician.
00:18:33.680 --> 00:18:39.279
Yeah, they really recommended this this new neurologist through UC Health, who who she sees now.
00:18:39.440 --> 00:18:42.079
And they said like it's a really long wait time, but like they're they're great.
00:18:42.160 --> 00:18:45.279
And and like the research that I'd done, like they do clinical rese studies there.
00:18:45.359 --> 00:18:48.000
I was like, this is exactly what we're in line with what we're doing.
00:18:48.079 --> 00:18:56.720
Like they're gonna know cutting edge medicine, they're gonna know like if they have a long wait, like they probably have a good um rapport with their with their patients.
00:18:56.880 --> 00:19:10.000
And so I remember calling UC Health and they said that you have to get on the wait list the first of the following month for six months, and so I think it was like last July or August, like shortly after all this.
00:19:10.160 --> 00:19:13.920
Um, and they said, Okay, February something is our first appointment.
00:19:14.000 --> 00:19:16.960
I said, done, whatever time, and yeah, just get us in.
00:19:17.119 --> 00:19:17.920
Yeah, just get us in.
00:19:18.079 --> 00:19:22.400
And and you couldn't go to that appointment, but I was able to be there.
00:19:22.720 --> 00:19:32.480
And I will say everything that I would have expected a neurologist to do was 100% done during that appointment.
00:19:32.640 --> 00:19:52.480
Like, um, from being open to my attending via FaceTime to honestly just spending a lot of time, like there was no pressure, there was no like get in, get out, like try to get this done, like rush information at you, slowed down, talk to mom a lot about like, did she have any brain injuries growing up?
00:19:52.640 --> 00:19:54.960
Did she, what was her career path like?
00:19:55.119 --> 00:19:56.880
What is her exercise routine like?
00:19:57.039 --> 00:19:59.839
How does she feel when she's um hydrated?
00:20:00.000 --> 00:20:01.039
How is she with her sleep?
00:20:01.200 --> 00:20:03.119
Are there any sleep disorders that she has?
00:20:03.200 --> 00:20:15.440
Like she she went into everything, and then and then she took a step back and really started to explain her perspective from like, um, you know, do you do you guys understand what dementia is?
00:20:15.680 --> 00:20:25.759
And she explained, like, we won't go into the whole thing now, but she talked a lot about the difference between like having the early stages of Alzheimer's and then what that part crosses into dementia.
00:20:26.000 --> 00:20:33.279
She talked and explained a lot about like what's the difference between like mild cognitive issues versus like moderate cognitive issues.
00:20:33.440 --> 00:20:38.640
And, you know, we even asked her, like, you know, are we just gonna do a slums test each time with you?
00:20:38.799 --> 00:20:41.279
And for her, the answer was no.
00:20:41.519 --> 00:20:58.400
And and that was actually, it's sorry, it's worth going back and saying that when my in that time that we were waiting to get to see the new neurologist that we were wanting to see, mom had gone back and had a second appointment with the previous, the prior neurologist.
00:20:58.720 --> 00:21:06.319
And they had done the slums test again, and I think mom's score went down like another two points or something.
00:21:06.720 --> 00:21:10.079
And that was something that our dad was like, oh, she's getting worse.
00:21:10.240 --> 00:21:12.640
The slums test is going down each time.
00:21:12.960 --> 00:21:16.559
And I could see why anyone would think that's the case.
00:21:16.720 --> 00:21:31.680
If you're being told, here's the measure of how well your cognitive health is doing, this is the test that we're gonna do, you would definitely assume that if you come back a couple months later and it's down, that the um issues are getting worse.
00:21:32.319 --> 00:21:41.119
This neurologist, and clearly each neurologist has their own perspective, which again is why it's important for you to know what's out there and what works best for you.
00:21:41.359 --> 00:21:45.039
This neurologist was like, I don't really use that as a measure.
00:21:45.200 --> 00:21:50.400
I use more of how listening to you, how are you living with this disease?
00:21:50.559 --> 00:21:59.680
What is, how are you dealing with being able to organize your medicine, with taking care of yourself, with showering, with eating, you know, with driving, with taking care.
00:22:00.160 --> 00:22:04.960
Of your pets, like how are you dealing with your normal everyday life?
00:22:05.200 --> 00:22:11.279
Is what I'm gonna use as the measurement of how things are going with your disease and or progressing with your disease.
00:22:11.440 --> 00:22:14.000
And I I thought that was really important.
00:22:14.799 --> 00:22:15.440
Yeah.
00:22:15.759 --> 00:22:26.240
And like she also, um, and again, I wasn't there, but from what you told me and everything that happened, was able to give us options for medications, therapies.
00:22:26.319 --> 00:22:29.039
Do you want to go into that a little bit and what she Yeah, absolutely.
00:22:29.200 --> 00:22:46.400
So, first of all, she already said that the two pills that my mom had been on that were prescribed by her psychiatric nurse practitioner were um great, great medications that do their job at slowing down uh the disease and keeping you stable.
00:22:46.640 --> 00:22:51.680
Um, she actually told us that, and again, this is not medical advice, right?
00:22:51.759 --> 00:23:05.200
We are not like really like naming the pills or like what they're doing, but at least what she had told our family in this appointment that for my mom is that being on those two pills can keep you stable for two years from when you start taking them.
00:23:05.440 --> 00:23:10.079
Because she really talked about cognitive decline as like a downward ramp.
00:23:10.160 --> 00:23:17.759
And what you want to try to do is get that line to plateau as much as possible, and that the pills that she was already on, she liked to see her on.
00:23:18.000 --> 00:23:27.440
Um, but then she actually talked about IV infusion therapies that um were potential options for mom.
00:23:27.920 --> 00:23:32.799
And um, you know, she she really slowed down and explained the whole thing.
00:23:33.119 --> 00:23:44.799
If you want to do this, like here's what the insurance covers, here's the debate about the drugs, this is why some people don't like them, here's why some people do, here's what the process will look like.
00:23:45.039 --> 00:23:50.720
Um, and you know, best case scenario looks like this, worst case scenario looks like this.
00:23:50.960 --> 00:23:58.720
If you, and she was, I also thought she was great because she said things like, if you don't, first of all, she was like, you do not have to decide today.
00:23:58.880 --> 00:24:03.759
This is something you should go home, talk to your family about, think about how this might affect you.
00:24:03.839 --> 00:24:13.039
Um, but if you want, we could at if you know you want to potentially explore this, we could at least get the blood work started, which is like the first step in finding out if you even are a candidate.
00:24:13.279 --> 00:24:27.359
And I thought that was that was great too, because I'm always looking for like really informed, kind of like I informed consent to proceed with different kinds of procedures or medications.
00:24:27.440 --> 00:24:33.759
And so I was really pleased with how much information and education she had provided for us.
00:24:34.240 --> 00:24:46.559
She also, um, before we left, she was like, the other thing that I want to make sure that we start doing for you is get you with uh memory therapy, which is basically like physical therapy but for your brain.
00:24:46.720 --> 00:24:53.519
And I was stunned when she even presented that as an option because I didn't even know that was a thing.
00:24:53.759 --> 00:24:54.880
I know, me too.
00:24:55.200 --> 00:25:03.680
Do you want to kind of talk a bit a little bit about like what um like how mom even responded once she started doing that?
00:25:04.000 --> 00:25:08.960
Yeah, it's really interesting because um well, two things.
00:25:09.119 --> 00:25:16.000
After her neuropsych test back in May of the fall previous year, they told her she should go to speech therapy.
00:25:16.160 --> 00:25:29.920
Um, which like my mom hasn't been diagnosed with like a specific variant of Alzheimer's, but from the research we've done, like it seems like it's more like the language um is getting affected first, which is why they're suggesting speech therapy and and and all this stuff.
00:25:30.240 --> 00:25:36.960
But she has been trying to get into a speech therapist still for over a year, and and like she can't even get on a wait list.
00:25:37.119 --> 00:25:42.079
And so this was such like a great solution that the neurologist came up with was merit memory therapy.
00:25:42.160 --> 00:25:43.440
They were able to get her in right away.
00:25:43.680 --> 00:26:02.960
And it's basically like I I was never at these appointments, but she did get send me a picture of the um like worksheets um after the appointments, and uh it sounds really silly, but it kind of is like a um it reminded me of like um kindergarten worksheets of like when you're learning your syllables, like okay, umbrella, how many syllables do you does it have?
00:26:03.039 --> 00:26:11.759
And they have to think umbrella, like it's using those those neurons that she still has to make those connections, and you have to say, like, okay, what does umbrella start with?
00:26:11.920 --> 00:26:15.680
Uh, uh, uh, and then ends with uh, you know.
00:26:15.920 --> 00:26:36.240
Um, but like then goes through like more things, and and I saw her confidence get so much higher after these um appointments because she felt like she can do it and she felt you know just was growing confidence, and I think it was it was just so great, and I I'm glad that she was able to to get into that.
00:26:36.480 --> 00:26:52.480
And I I I do I will say like me and Felicia have talked about like we try to do it with her via FaceTime and stuff, and you know, we we're using AI to our advantage, like we even told AI, like, hey, here's a worksheet, come up with a like a video game type thing.
00:26:52.559 --> 00:26:55.920
So I'll actually FaceTime her and it'll go through the process here.
00:26:56.000 --> 00:26:59.839
Um, because like I don't I'm not a I'm not a memory therapist.
00:27:00.400 --> 00:27:02.319
Um, I don't want to do it incorrectly.
00:27:02.640 --> 00:27:03.119
Yeah.
00:27:03.440 --> 00:27:12.880
Well, it's it's interesting though, like not to rush too far ahead, but what I was thinking about when you were describing that is like how great it's been for mom and like how important it has been.
00:27:13.039 --> 00:27:21.039
And so you can imagine my surprise when we're on a call the other day, the three of us, and mom's like, I don't want to go to memory therapy anymore.
00:27:21.200 --> 00:27:24.079
And I'm like, why would that be?
00:27:24.240 --> 00:27:28.640
Like, and it comes down to money and it comes down to insurance.
00:27:28.799 --> 00:27:43.039
And I will say, Yeah, you know, for a lot of people, resources and money are massive barriers to specialist to care, like just to care of different kinds.
00:27:43.279 --> 00:27:54.240
Um, a lot of people, like, this hasn't really been our family's experience, but I know people who will refuse to go to the doctor for years because they do not want to spend money on any of that.
00:27:54.400 --> 00:28:05.200
And so we're really lucky that like dad has been able to save enough that like these kind of options have been on the table for mom to pursue that.
00:28:05.279 --> 00:28:15.200
Um, but another challenge we've had, especially with mom who grew up with maybe some more like money issues, like really wants to make sure that she's safe and like not overspending ever.
00:28:15.359 --> 00:28:25.920
We've had a hard time sometimes convincing her to continue doing things that have cost money, whether it's the functional medicine doctor, whether it's the memory therapy, whether it's a certain test, whatever.
00:28:26.000 --> 00:28:28.799
Like she just gets really hung up on these things.
00:28:28.880 --> 00:28:32.319
And so maybe you can speak, like you have definitely shared.
00:28:33.039 --> 00:28:37.920
I'll just say it again, and I will always say this like you are the one who has done so much for mom.
00:28:38.240 --> 00:28:46.559
Like you have been instrumental in orchestrating a lot of really annoying logistics and details to find out how to take care of her.
00:28:46.720 --> 00:28:48.400
So, first of all, thank you.
00:28:48.720 --> 00:29:00.000
But I also need you to describe like what was that process even like to find memory care therapist who maybe would be better in like because you found out she the current memory therapist was out of network.
00:29:00.400 --> 00:29:01.759
Maybe you can speak to that a little bit.
00:29:02.079 --> 00:29:04.720
So it's really hard.
00:29:04.799 --> 00:29:06.799
And this is just my mom's experience.
00:29:06.880 --> 00:29:10.640
But anyone with early onset Alzheimer's may be going through the same thing.
00:29:10.880 --> 00:29:25.839
She my my dad retired because he's of retiring age, but my mom had to get private insurance because she doesn't qualify for um Medicaid or Medicaid money or whatever's the one that's at 65.
00:29:26.319 --> 00:29:29.839
Um and because she's and she's just a couple years short of that.
00:29:30.000 --> 00:29:39.519
So like now they had to go find a private insurance, and you know, insurance, this is is not a podcast talking about the the loopholes with insurance.
00:29:39.680 --> 00:29:52.640
But what I will say is like there's it's a it is a very big challenge for for anybody, especially in these situations where um insurance doesn't want to pay for things that they don't think is like medically necessary and and all this stuff.
00:29:52.799 --> 00:29:58.240
So um she was going to this memory therapist with my dad's insurance care, by the way.
00:29:58.559 --> 00:30:00.240
Okay, that's good too.
00:30:00.480 --> 00:30:08.880
Yeah, um, so she was going to this memory care with my dad's insurance at the time, but once she switched insurances, we got a uh claim saying this was denied.
00:30:09.119 --> 00:30:14.960
And of course, like I called, like it was gonna be like$900 for like this hour appointment, and we were like, oh my god.
00:30:15.039 --> 00:30:21.200
So we called them, they said, and they basically said, like, if you want to pay out of network, it's like$300 um pocket.
00:30:21.359 --> 00:30:22.319
Putting out of pocket, yeah.
00:30:22.400 --> 00:30:23.200
It'll be like$300.
00:30:23.440 --> 00:30:25.119
And my dad said, Okay, let's do it.
00:30:25.359 --> 00:30:33.519
But I think, like Felicia said, like, especially as this does disease is progressing, for some reason, like money is just a big trigger for my mom.
00:30:33.680 --> 00:30:40.160
And like anything that especially has to come with like her medical stuff, like she doesn't, like, she it just stresses her out so much.
00:30:40.319 --> 00:30:51.519
So we did say, like, okay, we can stop seeing this memory therapist, but we we have to see a new one, like this is very important, and it might seem silly in the moment, but like it's it's helping keep those neurons that you have.
00:30:52.319 --> 00:31:01.680
And so I had to work with United, um, which is like her private insurance, and basically say, like, who is in network for this memory therapy?
00:31:01.920 --> 00:31:04.319
So that way I can go to her neurologist and send a referral.
00:31:04.400 --> 00:31:06.000
So, very long story short.
00:31:06.079 --> 00:31:11.200
It took me hours to finally get that because it's not a typical Did you have to call or did you just look on it?
00:31:11.359 --> 00:31:11.759
I chatted.
00:31:13.039 --> 00:31:14.559
Yeah, I chatted with them.
00:31:14.799 --> 00:31:19.680
Um, and they got me one name of somebody 45 minutes away from her.
00:31:19.839 --> 00:31:24.720
And so I I went through the portal and told the neurologist, like, hey, like here's the situation.
00:31:24.799 --> 00:31:25.759
Can you send a referral?
00:31:25.839 --> 00:31:27.839
And they immediately responded and said, like, referral sent.
00:31:27.920 --> 00:31:30.640
So I do need to follow up on that probably Monday.
00:31:30.880 --> 00:31:36.319
But that's interesting too, though, like going back to what we said at the beginning about how the PCP refers everything out.
00:31:36.400 --> 00:31:41.440
But if it's something that like the neurologist is recommended, then the neurologist has to send the referral.
00:31:41.680 --> 00:31:44.799
So you do have to kind of keep everybody straight.
00:31:45.119 --> 00:31:45.440
Yeah.
00:31:45.599 --> 00:31:51.680
I'm sure the doctor could have, um the PCP could have maybe sent it out, but I don't know.
00:31:51.839 --> 00:31:54.960
Again, the original referral came from her.
00:31:55.119 --> 00:31:57.039
Um from yeah, from her.
00:31:57.200 --> 00:31:59.039
So I just wanted to keep it in that.
00:32:00.240 --> 00:32:02.160
Yeah, I think that's a really important part of it.
00:32:02.319 --> 00:32:06.240
You know, the thing that I found is like there's no silver bullet with this.
00:32:06.319 --> 00:32:16.400
Like, there's no one thing you're gonna do that's just gonna extend a person's cognitive health, make sure that they can never like live a long, healthy life, and like there's nothing you have to do.
00:32:16.559 --> 00:32:26.640
You know, it is funny, and I think it's really relevant to kind of to say there's no one thing you're gonna do that's gonna be the one big superpower here, right?
00:32:26.720 --> 00:32:32.960
Like, there's there's lots of little things that you can do and that you can look into.
00:32:33.359 --> 00:32:54.079
And so continuing to ask yourself, like, if you have a need or a gap, like continue to ask questions and don't be afraid to reach out, whether it's to the PCP, a neurologist, a your the nurse practitioner, and say, like, hey, we, you know, we feel like maybe therapy would be a good thing for for my mom.
00:32:54.160 --> 00:32:56.079
Like, do you have any recommendations?
00:32:56.319 --> 00:33:04.240
Um, for us, like my mom did start seeing a therapist early during when all of this had started, and she liked that therapist.
00:33:04.400 --> 00:33:08.160
It was, it was, they had a great personal rapport.
00:33:08.640 --> 00:33:19.599
But what we had found outside of from her care team is like there would also be a lot of commentary from my mom saying, like, I don't feel like I'm working through my trauma, I don't really feel like this is helping me.
00:33:19.759 --> 00:33:30.720
And then what we also noticed, especially after we had pursued the IV infusion therapy, and we decided like my mom wasn't gonna be a candidate, we weren't gonna pursue that anymore.
00:33:30.880 --> 00:33:38.720
Um, that there were a lot of issues my mom seems to be having with the fact that she has Alzheimer's, rightfully so.
00:33:38.880 --> 00:33:47.759
Like this is extremely traumatic, and um, she didn't really have the right therapist to help her deal with and process that part.
00:33:47.920 --> 00:33:49.839
And so that's another thing that we did.
00:33:50.000 --> 00:33:51.440
We were like, this isn't working.
00:33:51.599 --> 00:33:52.960
What else can we do here?
00:33:53.279 --> 00:33:58.799
Turns out there's therapists who specialize just in people that have Alzheimer's or dementia.
00:33:59.119 --> 00:34:02.319
Um, you want to speak to your conversation with the one?
00:34:02.960 --> 00:34:13.280
Yeah, so um, I originally started by calling the Alzheimer's Association, which at the end of every episode I always say like it's a free resource for situations like this.
00:34:13.360 --> 00:34:16.400
Like if you don't know where to begin, they can they can put you in the right direction.
00:34:16.480 --> 00:34:20.559
So I called the Colorado Association and said, like, hey, like my mom sees a therapist right now.
00:34:20.639 --> 00:34:26.719
We really want to get her into somebody who specializes in Alzheimer's or dementia who can help navigate coping with that.
00:34:26.960 --> 00:34:31.280
And they she gave me, she emailed me back like three or four different options.
00:34:31.440 --> 00:34:32.559
And I looked them all up.
00:34:32.719 --> 00:34:44.639
Some of them, um, like it said, like they moved to Maine or like other places, and like two of them I reached out to said, like, they're at a wait list capacity, they're not even taking anybody on the on the wait list because I think it's a very, very niche market.
00:34:45.039 --> 00:34:54.719
And um, and one person that I did look at though that said that they're not taking anybody, but like feel free to reach out and she could provide more recommendations.
00:34:54.960 --> 00:34:59.519
And so that's what I did is I reached out to her, she emailed me back, a few other options.
00:34:59.679 --> 00:35:05.119
I reached out to these other people, and one of the girls um it was great.
00:35:05.199 --> 00:35:23.360
Like she set up a like a little consultation with me because I really wanted to, I wanted it's not that I wanted to vet the therapist, but like I I wanted to see if it's a right fit because my mom like no longer has the ability to do those, those like little intake um questionnaires, yeah.
00:35:23.440 --> 00:35:25.039
Like, yeah, like I wanted to fill her in.
00:35:25.199 --> 00:35:26.639
Like, here's here's what we're experiencing.
00:35:26.800 --> 00:35:28.400
Do you think this this would be a good fit?
00:35:28.480 --> 00:35:31.119
Like, is this something like I want to make sure it was a good fit on both sides?
00:35:31.360 --> 00:35:35.440
And we've been talking for like 40 minutes about like her experience.
00:35:35.519 --> 00:35:38.559
Like, she used to work, I think it was neuropsychology evaluations.
00:35:38.639 --> 00:35:43.440
Like, my mom originally did to get the diagnosis, and she's worked in um you know, assisted a living.
00:35:43.519 --> 00:36:00.239
Like a lot of her patients are older because most people who have dementia and Alzheimer's are older, but um, she does think that it would be uh be a good fit, but she's also at a wait list, and it was luckily only about two months, so she should be starting that um in July.
00:36:00.639 --> 00:36:17.360
And it unfortunately, with all of the therapists that I did see that do specialize in it, none of them take um insurance, so it is out of pocket, but I do think it is worth it to get your loved one like the support that they need because it is.
00:36:17.679 --> 00:36:26.400
I mean, I can't even imagine what it's like being being told you have Alzheimer's, and especially in my mom's case, like it was her worst nightmare like ever for her whole life.
00:36:26.559 --> 00:36:28.960
Um, she said she always she never wants to get Alzheimer's.
00:36:29.119 --> 00:36:31.440
So um, it's true.
00:36:31.519 --> 00:36:46.559
The other thing because I wasn't on that call, and I I would also just say on the record, like, you did vet that therapist, and it's a good thing you vetted that therapist because it is okay to say, if I'm about to spend money with you, like I want to make sure that you're gonna fit my needs.
00:36:46.719 --> 00:36:57.440
And I would say that I think for a lot of people, maybe even more so like women, like we feel at times like I don't deserve to ask those questions.
00:36:57.519 --> 00:36:59.039
I just need to take whatever I get.
00:36:59.199 --> 00:37:09.599
Like, if this is the doctor offered to me, like if you're if you're hearing one like through thread of this podcast, it's like never accept that as like the bare minimum or like just what you have to deal with.
00:37:09.679 --> 00:37:16.079
Like, you can always say no, you can end therapies, you can change them, you can pursue other doctors.
00:37:16.320 --> 00:37:18.960
Um, so sorry, get off my high horse on that.
00:37:19.039 --> 00:37:24.719
But I will also say that once you called and you, of course, you call me and tell me about everything that you learned.
00:37:24.880 --> 00:37:34.559
Um, you also said that she doesn't just stop at the patient, that she also uh like can bring in the the co the other caretaker, the primary caretaker.
00:37:34.639 --> 00:37:44.159
And like we really liked that because we were like, yeah, like the the complications of having an Alzheimer's diagnosis on the effect on the family.
00:37:44.320 --> 00:38:00.320
And as much as um actually, I I'm remembering like a TikTok that I once saw that said, like, when one person gets diagnosed with Alzheimer's, like really a family gets diagnosed with Alzheimer's, and it's because you your life is forever affected too.
00:38:00.480 --> 00:38:02.800
And that is a hundred percent true of our dad.
00:38:02.880 --> 00:38:13.599
And like to know that if they need to go and like talk about a certain topic or if she can help translate, here's what Rose is actually going through, and this is how you can actually help her.
00:38:13.679 --> 00:38:18.239
Like, the fact that we can have that as a resource will be invaluable for our family.
00:38:18.559 --> 00:38:19.599
Yeah, that's so true.
00:38:19.760 --> 00:38:25.599
I already forgot about that, and not only that, one thing I really like too is like she doesn't just stop there.
00:38:25.760 --> 00:38:38.000
Like, she is a because she has so much connection through her previous experience, like she knows um memory care facilities if it ever got to that point, which I know is like the la like the very last thing on our list.
00:38:38.239 --> 00:38:54.000
But it's good to know that like I mean, there's there's so many options out there to have somebody that you would trust that can vet places, or or you know, she might be um uh a good resource for a social worker, which I know we're we're we're wanting to get into as well.
00:38:54.480 --> 00:38:56.559
Or a geriatric care manager.
00:38:56.800 --> 00:38:58.480
Yeah, yeah.
00:38:58.800 --> 00:39:07.679
Yeah, those are two the the reason we bring those up and we don't have a lot to say about them is like we we're still learning ourselves, like what's even available out there.
00:39:07.920 --> 00:39:24.800
And again, what's a little bit unique about our story is like our mom is still in the early stages of the disease, and so we hope we have many, many, many years left where we can slow down her decline and and and not even have to talk about like any kind of assisted living or anything like that.
00:39:24.880 --> 00:39:34.960
Like we know that that's her, she never wants us to do that, and so it's um it's been hard to even feel like we're like we're not anywhere close to being able to plan for that.
00:39:35.199 --> 00:39:53.519
But one of the things that I had um recently learned about is like there are specialists, whether it's like a social worker or like um there's some like geriatric care facilities that like will actually come to your house and do like an a full day of like assess it's an assessment.
00:39:53.679 --> 00:39:55.760
Like, how are you doing living on your own?
00:39:55.920 --> 00:40:12.400
Are there any recommendations for like like one of the biggest things that we have like just if we're being honest, like struggled with our our dad and our mom is like helping translate to my dad like what executive functioning things are too much for my mom?
00:40:12.559 --> 00:40:23.920
So like he'll just assume she can just order pills or she can just make a recipe for friends coming over because she always could do that, or she can go clean all three bathrooms in their house.
00:40:24.239 --> 00:40:29.119
What we know is like there's that's a lot of executive functioning, right?
00:40:29.199 --> 00:40:42.880
There's you have to know what order to do things in, you have to know how much time to spend on things, and like all of that is an extreme cognitive uh strain, and she does not have that accessible the way that she used to.
00:40:43.119 --> 00:40:48.320
And so we were like, you know, we can say this to my dad all day long.
00:40:48.639 --> 00:41:02.400
He doesn't seem to be able to hear it from us, but we do feel like he would have a much easier time hearing it from somebody who could explain, hey, I did this assessment with her, here's where she's doing great, here's where she needs additional help.
00:41:02.559 --> 00:41:17.920
Um, so we like with many things, like one of the challenges of this entire process of trying to build out your care team, um, especially with professionals, is you've said it a lot, wait list, but sometimes people are and companies are so busy that they won't even call you back.
00:41:18.079 --> 00:41:23.280
And so for the past like month, we've been trying to look into this and we haven't been able to find somebody to call us back.
00:41:23.519 --> 00:41:27.360
So we're definitely living that struggle too.
00:41:27.599 --> 00:41:28.639
But I don't know.
00:41:28.719 --> 00:41:33.119
I I do think that overall we have a pretty robust care team.
00:41:33.199 --> 00:41:35.679
We're really, really fortunate in that way.
00:41:35.840 --> 00:41:45.039
Um, I know that not everybody has that, but I do hope that anybody listening today has felt like maybe maybe you didn't know many of these things either.
00:41:45.119 --> 00:41:53.599
And so just learning what you don't know is everything when it comes to like working your way through this terrible disease.
00:41:55.119 --> 00:41:56.400
Yeah, well said.
00:41:57.199 --> 00:41:59.760
All right, well, we'll talk to you next week.
00:41:59.840 --> 00:42:07.920
We're gonna have my mom on to dive a little bit deeper into the functional medicine portion and how she feels like it's been going and diving a little bit into that.
00:42:08.000 --> 00:42:10.400
So if you're interested in that, tune in next week.
00:42:10.719 --> 00:42:11.599
Bye-bye.
00:42:12.000 --> 00:42:18.880
If this episode resonated with you, or if someone you love is navigating an Alzheimer's diagnosis, please know you don't have to fight it alone.
00:42:19.039 --> 00:42:24.880
The Alzheimer's Association is a free 24 7 resource available to anyone who needs their support.
00:42:25.119 --> 00:42:29.760
Whether you're newly diagnosed, deep in caregiving, or just trying to understand what comes next.
00:42:29.920 --> 00:42:35.599
You can reach them anytime at 1 800 272 3900.
00:42:36.079 --> 00:42:40.800
You can also reach them online at alz.org.
