Lumbar Punctures, Trial Data, and the Infusion Decision | Caregiver Update

This is a real-time update on our mom Rosemary's early onset Alzheimer's journey from April 2026. We had been going through months of testing and workups to understanding if our mom would be a candidate for anti-amyloid infusion therapies — lecanemab and donanemab.

We walk through the full workup: the APOE genetic testing, the lumbar puncture required to confirm eligibility, and the genetic counseling to rule out inherited mutations tied to early onset Alzheimer's. We also get into what happened after the lumbar puncture — a spinal headache that sent our mom to the ER for a blood patch while our dad was out of town, and what we learned about aftercare instructions and coordinating care from a distance.

Then we talk through the call that changed the direction of this whole decision: her tau levels were high enough that the studies show almost no measurable benefit from the infusion therapy for someone at her level, even though she wasn't formally ruled out as a candidate. We talk about how that news landed for her, for us, and how we've had to separate the clinical data from the grief of hearing it.

This episode covers real time processing of our mom's Alzheimer's diagnosis and what it's like as adult children trying to make these decisions as part of our mom's care team.

Transcript

SPEAKER_01 0:00

Welcome to Conversations Through Alzheimer's. I'm Amber Marty and I'm Felicia Wood. We're sisters and daughters of Rosemary Marty, diagnosed with Alzheimer's in June of 2025. We're documenting her journey as it happens and we're sharing every resource we find along the way. This is her story and ours.

SPEAKER_02 0:18

Thank you for joining us for another episode of Conversations Through Alzheimer's. Today we're gonna be doing live update number two. Before we get dig into everything though, we're gonna be talking about my my mom's potential candidacy with the anti-amyloid therapies that are given through IV infusions that you may have heard us talk about in previous episodes. And I just want to preface that anything we talk about, we have done, you know, with our own research and like through our mom's neurologists and specialists. So if you're interested in any of these medications, please reach out to your own neurologist or do your own research. We are, as we always like to say, we are daughters, we are not doctors. So take everything we say as surface level research and do your own research.

SPEAKER_00 0:58

Yeah, we're we're just giving our own experience reflecting the conversations we've had along our our mom's journey and our journey through um her Alzheimer's diagnosis and and journey, Alzheimer's journey. And so yeah, well, well said, just do your own consultation. This is purely anecdotal from our own experience. Yes.

SPEAKER_02 1:20

Um, so as you've heard in previous episodes, we've talked about my mom's neurologist that she saw last February, and she was the one that actually recommended um seeing if my mom Rose was a potential candidate for either of these newer infusions. The first one's called Lacanimab, and the second one is called denanomab. Those are the two medical or two medicines that they can give via the IV infusions. That basically what they do in layman's terms is go in through the IV, and over six to eighteen months, depending on the medication that is in there and the amount of amyloid plaque in your brain, will remove some, if not all, of that plaque and then allow the brain to create new neurons in those pathways. It will not, what we've understood is it will not make things better. It will not reverse anything. We are not at that point in Alzheimer's research yet. But what they've said is it can provide up to a 20% uh slowness in the progression. So that is just a little bit of background. The reason why we needed to give you that background is because my mom has been going through and seeing if she's a candidate for this since I think the beginning of April, maybe end of March of 2026, last like month and a half.

SPEAKER_00 2:37

It actually started at the neurologist appointment with the first blood draw for her genetic.

SPEAKER_02 2:44

Because there's a lot of yeah, there's a lot of tests for this. It's it's not just uh, oh, you have Alzheimer's, let's get you started with these drugs. The the first thing that they tested for was um, are you a APOE-4 carrier? Um, a lot of people may have heard of this, and if you've ever done like 23andMe, it's an option to see if you are what what APOE gene you have. There's two APOE two, three, and four. If you're APOE two, that actually means your brain has like an already protective layer from Alzheimer's. It doesn't mean you won't get it ever, but it automatically has a protective layer. Three means it's neutral, you are neither pro-Alzheimer's or anti-Alzheimer's in terms of the biology in your brain of getting it, and then a four means you're more predisposed to get it. It doesn't mean you will, but it means that you have to uh or you should like work at those brain healths a little bit more, like make sure you're getting sleep and exercise and everything that we'll go over in a future episode.

SPEAKER_00 3:45

Yeah, and the the most important reason why all of the workups are required is because there are some pretty legitimate and significant side effects of either of these treatments. And so the entire genetic makeup, finding out the gene and finding out more about what's happening for her biologically with all of her levels, the diagnosis, all of that adds to the picture of if she would be a good candidate to have potentially have less risks. And that's a that's one of the biggest pieces of this journey. And one of the things that she had told us in that first appointment was hey, these are newer, they were approved by the FDA a few years ago. They're, you know, having some good success, but it's a quite an intensive process. And so she had to start with the genetics counselor, and then she also had to meet with the clinic that actually does these infusions. It was a different doctor, and then that doctor had a lot more to say about what other pieces of the puzzle that she needed. Like, for example, our mom had only had been diagnosed with the P Tau 17 217 test. But for to be a candidate for these IV infusions, you actually had to have the lumbar puncture test done. And so that was going to be another kind of piece of the puzzle was to go get the lumbar puncture. So over since February, when we first met with the neurologist, we've been we're we're recording this in early May. It's been quite an uptick in appointments and conversation around these IV infusions, watching videos as to what the side effects are. Like there's been a lot of research and preparation, and while we give all this background, I will say it's I mean, it has been like a little part-time job and trying to understand and make sure that it's something that works for everyone. And I'll also say that not everyone in our family has agreed um at all times about the approach and like if it's the right thing to do. I will say for most of us, like for myself, Amber, I think our aunt and even my mom, like there's kind of been that, hey, if there's something that can help us or like take some of this away or help her to live a longer life and keep herself here, we want to do and explore any of those options. My dad, I think he, it's not that he doesn't feel that way, but he was kind of along the train of like, well, if these side effects are so bad, then like what if like why why do that at all? I mean, how would you think about it?

SPEAKER_02 6:15

Was something he asked the the specialist, we'll call her. I think she's also a neurologist, but she specializes in these infusions. She basically said the Alzheimer's patient doesn't know they're getting any better because like with with all it and then she made a really good point too. Like, you will never know how it would go if you didn't do the infusions. You can't make a carbon copy of somebody and say, This version of Rose did the infusion, this version of Rose didn't. And so I think dad wanted, like, basically, like he wanted it to say, like, she's gonna feel better, she's gonna know this. And he's like, Well, she's not even gonna know the difference, then why would we go through? I mean, it it is, it's like we like depending on the drug, like you know, IVs multiple times a month, MRIs multiple times a month, like driving across town. Like it is very intense, and like as we'll discuss later, it's it's intense emotionally for especially the Alzheimer's patients and the caregivers, and and gave you up all that time and the risks of of of everything that it comes with it. And so it's like he was just trying to, I think, say, like, for only a 20% benefit that you know mom's not even gonna see, is it worth it? And so he wasn't saying no, he was like, let's do the workup, let's do all these tests, but like, let's if she has a kid in it, like let's really think about if we want to do this.

SPEAKER_00 7:26

Yeah. And I I will say, I mean, it's something that I don't think anyone can prepare you for the level of deep conversation and that you have to have as a family, especially regarding somebody else's life, because there are really big pros and cons, and it's a very personal decision, right? Some people are the kind of people that want to be on the cutting edge of medicine. And like, even if they do have side effects, like it's worth it for them to go through that process of trying. Other people are much more conservative, they don't want to have anything kind of near this, and and you'll you'll even find this with the different neurologists out there. You know, I think we've talked before about uh different neurologists and trying to find the right one for you, but like even this you have to evaluate as part of your own workup, your own preferences. Some neurologists won't even give this to you as an option, while other ones will say, Hey, it's my job to tell you what's out there and inform you of all of the risks. And then it's up to you to decide what's best for you. And so I think for us, we we wanted to explore this as fully as possible, learning everything we could along the way. And it's been a it's been a journey because um when we first talked to Dr. the doctor, it seemed like, okay, like let's just start taking this one appointment at a time. And I will say that as we started to lead up to the lumbar puncture, we started to notice that, like, I would say that it seemed like all of the extra appointments were really starting to weigh on mom emotionally. And that was something that if you would have rewinded us to the first appointment with the doctor to say, hey, would you like to see if you're a candidate and you want to do this? We couldn't have known how that was going to impact our mom until we started to move our way through it. I mean, Amber, do you want to maybe talk a little bit about the week leading up to the appointment with the specialist and like having to watch the mom's experience with the videos and how you kind of helped guide her through that and things you noticed that week?

SPEAKER_02 9:28

Yeah, so about a week before the appointment, they sent two videos, I think one for each medication, because you don't know that if you are eligible in the end, they will recommend which drug they think. Like some are better for women, some are better for different stages. I don't I don't know exactly, but they give you both drugs, and then it basically is like a 45-minute episode about the side effects, which for anybody watching can be really scary. For if if you I mean, we'll briefly talk about it, but if you do your own research, like the biggest risk in these drugs is brain bleeding, which they do MRI's very frequently. It's not an issue like where anyone's died from it, like nothing like that. But of course, no one wants their brain to be bleeding. So it was basically a 45-minute video about how your brain could bleed from this and the different side effects because it's their job as doctors for you to understand the risks and the benefits.

SPEAKER_00 10:20

And again, just again, just the warning word we're daughters, not doctors. This the consequences are serious, but like you can't even access this therapy until you go through a lot of approvals, the workups to make sure that you would be a less lesser effect. I just want to say that because it's it's probably easy for us to not get the information perfect when we're talking about what who's had what kind of side effects. We're just sharing what we've learned along the way. Keep going.

SPEAKER_02 10:47

Yeah. But to that point, like that's the original reason why they tested her for which APOE gene she had that first neurology appointment back in February. Because if you are AO APOE four, that does lean more towards maybe not the best candidate for these, um for these studies, because they what they found in the studies is like those people may have more of a risk of a brain bleed. So after all of the tests, they actually don't even the specialist doesn't even make the decision. She has to bring it to an entire brain board for them to make the decision. Like they do not take these things very lightly.

SPEAKER_00 11:26

Because it really they have to make sure that you are a great candidate for the program, and there's a lot of things that could potentially roll you out. And so going back, so you were watching the video.

SPEAKER_02 11:38

Yeah. So um, in hindsight, and this is something we've learned along the way, which we'll get into later in this episode. I wish I would have watched it first and given her the highlights. Um, because what I did because you know, it it got sent to her portal, and then she was like, How do I get into my portal? And so I had like it on Zoom, like we get into the portal, and I was like, All right, well, let's both we're gonna hang up on the phone, let's both watch this, and I'll call you back in 45 minutes and we can, you know, go over any questions you have. So we did that, and the entire time I was watching it, I was like, Oh no, this is Yeah.

SPEAKER_00 12:09

And our dad was watching it with her.

SPEAKER_02 12:11

Yeah, I didn't know that at the time, but um yeah, that's good. Yeah. Um, so anyway, I called her immediately after because I was like, I mean, for anybody watching this, this is a scary stuff. And as not to my surprise, she was crying, you know, very scared. And and it's not that she didn't want to do it, she didn't say, like, oh my god, I don't want to do this anymore. It's just it's scary. Like anything that has risks is scary.

SPEAKER_00 12:32

And well, I think it also brings up that feeling of like, I just wish I wasn't in this position. Like, I don't exactly not want to do it, but I also feel like it's my only path to potentially have, I don't know if a cure is the right word, but like some some ability to kind of get some relief from how the trajectory, right? And so, yeah, I think that was a big thing for her. Is like she was just like, no, I still want to do it, but like it's really, really scary. She kept talking about like how the side effects are just so I don't know if she used the word crazy or just like can be so bad.

SPEAKER_02 13:04

Like, and that was one of all she clinged on to in the video, like she didn't listen to like the benefits or anything like that.

SPEAKER_00 13:09

And I think that's I even told her, because I I mean you you kind of took the brunt of it right away, but I even said, like, Mom, there's if you had to watch a video of every medication you've ever took, like you might feel differently about having taken those. And like you've been okay, you know.

SPEAKER_02 13:25

Well, I'm like, you have to think about I I tell her basically the same thing. I was like, look, if you listen to like Hulu or anything like that, it's like you know, Zikembi. Well, I don't know, like, or sky nabby, I don't know. Like, yeah, and then at the end, they always say, like, you could die from this medication, blah blah blah blah blah blah. Like they speak it so quickly because they don't want people to hear that, but they legally have to. And this is basically just that slowed down. Um, and I'm like, every medication out there is gonna have a list.

SPEAKER_00 13:51

If anything, this one has is so much better because they care so much more about it. You have to do MRI is you have to do it. Way more safety infrastructure, way more doctors looking at your profile for that. Like, that's so much different than most day. Here's your prescription. Good luck, go to the ER if you have a bad side effect. You know, this is a totally different situation because it is serious, it's your brain. Yeah. So she got scheduled for the lumbar puncture. Well, she met with the doctor first, and that was interesting too, because we all we FaceTimed in for that appointment, and we had an interesting time with that one. Again, like anytime, I just want to highlight, like, we don't have to go into the specifics, but like it's a journey when all four of us feel different ways about my mom's disease, and my dad is there in person, and we're trying to get information, and it can be really intense and um exactly. And and I'll say she was she was pretty cutthroat. She was like, listen, like if you even want to do this, like you're gonna have to get the lumbar puncture, there's gonna be more genetics counseling, we gotta make sure you don't have mute. And I think that we were also a little caught off guard because I thought we kind of again, we didn't know, but I think we had thought that we were mostly to the place where we would be able to find out, only to then find out, oh no, there's a lot more we have to do. And for some reason, you know, because we were able to get the diagnosis through the blood test and not a lumbar puncture initially, I think my our parents have kind of got in it in their head that a lumbar puncture would be really scary and really like last case scenario to do a lumbar puncture. And so even that was like maybe a little bit higher stakes than it would have been to be like, okay, now I have to go have this procedure done. And as you'll find out, turned into kind of a whole situation, too. So we had that meeting coming out of that meeting. Um, I think again, more appointments, more pressure, trying to find out more about this, continuing to see if you're a candidate. And so we had got her gotten her schedule for the lumbar puncture.

SPEAKER_02 15:58

Yeah. So I mean, even the morning of the lumbar puncture, I got a call from dad. I don't know if you ever knew this, Felicia. He was like, I just dropped your mom off, but um, because he was like, I'm trying to valet park the car because I I don't know if they were running late or maybe valet parking is the only option. I have no idea. He was like, I'm trying to valet park the car, but I just dropped your mom off. So like in my head, I'm like, why would you send an Alzheimer's patient to a brand new facility to go find it herself? He's like, but she doesn't know the doctor's name or or where to go. So can you call her? And I'm like, granted, this is the middle of my workday, which thank God, like my work is flexible enough to like where I can answer a call and help her and stuff, but like again, it's really for another day. But I'm like, why can't this phone call?

SPEAKER_00 16:38

Um, you're like again, that's a frustration, and like again, in hindsight, it's like if you're taking care of somebody with Alzheimer's, it's like get there early enough to park together and stick together, like have a buddy system. Like, if you don't if you are second guessing whether you're beyond that part of your life, like, yes, you are. You can no longer drop people off at the door. Like, that's yeah, exactly. That's my opinion.

SPEAKER_02 17:04

Yeah. Um, so I called mom and she's like, I'm not lost. And she had no idea why dad called me. She's like, it's fine, I know where I'm going. And then so then you wonder if she even means that because you don't. Yeah, exactly. So I was like, Well, let's just stay on the phone, like, and I'll just you know stay with you until you get there, just in case. And so, like, while I'm on the phone with her, I'm looking up on the portal because it said like they sent us a message like, There's construction, you have to go to this building and this floor and follow these signs for neurology and and all this stuff. And I they obviously got there okay because she said, Oh, dad's calling me, I'm gonna click over. And I said, Okay, well, call me back, and then I never got a call back. But I was following them on Find My Friends, and I saw, like, oh, it looks like their their dots are together now, so that's great. Um, but yeah, they did the procedure, they said everything went great. They even did the blood test there, which she was scheduled for like a couple days later. So I was glad they were able to get that all done. Everything went so great that do we talk about this?

SPEAKER_00 18:02

Yeah, we have to talk about it. Yeah. I mean, again, I think what you're about to hear is like lessons learned, like things that we are literally navigating this in real time. And while we knew the lumbar puncture was a serious procedure, um, it was also outpatient. Yeah, outpatient. Like we did not know the risk. Well, we didn't think to look at like the aftercare instructions, right? Because of course, my mom and dad got briefed and we were like, okay, like they'll tell us anything important. If you're a child of parents, let's just say, don't assume that they're gonna tell you what's important because if we would have read the aftercare instructions, like things would have gone differently. Yeah, so go ahead and say what happened.

SPEAKER_02 18:47

So they got home from the procedure, and she was feeling great. Um, so you know, my dad was wanting to go to his cabin. She said, Go for it, which we've had a conversation since then that you can't listen to an Alzheimer's patient on their symptoms.

SPEAKER_00 18:59

Well, we also said, like, in general, like you have to wait 48 hours after a procedure has happened and after any symptoms are happening. Yeah, which we'll get into that.

SPEAKER_02 19:11

But so anyway, he went to his cabin. She got progressively worse over the last couple over the next couple days. Um, just mainly just saying she had a headache and every day get a little bit worse. Like the first day she was a lot more active than we knew she realized she should be. Yeah, and so like by like Wednesday, we were like, You're you are on doctor slash daughter orders, bed rest, like well, Uber eats you food, whatever you need, just stay laying down. And she did. She drank water, she laid down Thursday, same thing, but she had an appointment on Zoom on Thursday, and she told me later that evening that she had to cut that appointment short. She had to tell that doctor, like, I'm sorry, I can't do this. I have to go lay down. I don't, I don't feel good, my head hurts. And we thought that was a little weird, but we thought it was weird.

SPEAKER_00 19:54

We were also kind of frustrated that my dad wasn't there because we were like, She clearly needs somebody like monitoring her, like this doesn't feel right, something is off. But in the in the moment, these things are happening pretty quickly, and you're also like used to the world where like my mom can be self-sufficient, and she's actively saying, like, it's fine, I don't want your dad here. And if he wants to go be at the cabin, like you know, she's advocating for herself, and so it's really hard from being far away to know where to push or what's okay or what's not okay, especially when it's already happening. So she she went to bed early that night, and then I called her the next day.

SPEAKER_02 20:34

Yeah, I called her around 10. I think it was 10 a.m. mountain time, and um or FaceTimed her um during my lunch. And she was like in the recliner chair, so she wasn't horizontally flat, but she was in the living room, and I could tell she like basically had tears in her eyes, and she just said, like, oh my head just hurts so bad, I can't even sit up, like I couldn't, I couldn't eat this morning, couldn't finish my eggs, I couldn't do anything. And I was like, something that seems really weird, and I didn't want to alarm alarm her. So I was like, Well, I'm gonna do some research and I'll call you back. And the reason why I said that is because I was looking up her aftercare notes at that time to be like, did they did they mention anything that like she should be drinking these things or doing any of these things? And that's when I saw in the aftercare notes that it said if you get a headache that gets progressively worse, you may need to go to the AER for a procedure called a blood patch.

SPEAKER_00 21:27

Yeah, and so because this is a known complication of a lumber function that we had no idea about that they before.

SPEAKER_02 21:35

Yeah, and so I immediately call Felicia because she is the number one person to call. She however she was not available.

SPEAKER_00 21:43

So I I mean, I want to go into everything I was going through that day, but I was in a very big situation myself, and I had no idea, to be honest, that mom had been getting worse. Because again, it's not like we're at a place where like mom's texting me, like, hey, I have a headache. I'm not feeling well like there's a there's some broken communication that's happening. So I missed that call from Amber, and Amber had to kind of go down her list of like next steps because I didn't answer. She also texted me, like, call me when you can, please. And I just knew the second I got that text, like, shoot, something is well, it's the middle of a work day. Like, yeah. But you, I think you called dad. Yeah, how did that go?

SPEAKER_02 22:27

Um, well, it sounded like he was in the middle of nowhere because all I could hear was wind. Hello. And I'm like, like, okay, yeah, your wife that you left two days ago. It's like like having a problem and he's to go to the ER. Okay, well, call Linda. There's nothing I could do.

SPEAKER_00 22:45

Yeah. And that's when I think I called you. Yeah. And I'll say, Amber, um, like, when I answered, I was like, hey, what's going on? And she goes, I'm going to call you in with mom. Merge. And then you're going to be. Oh, yeah, because I called mom back and I'm telling you. She will warn you, Felicia, but to catch you up, mom has a very bad headache. It's gotten worse, and she needs to go to the hospital. And I'm like, wait, what? What is going on? Meanwhile, what Amber and I do not know is that it's a blizzard in Denver, as this is happening.

SPEAKER_01 23:15

One blizzard the entire year. Yeah, exactly.

SPEAKER_00 23:17

It's April. Pouring down, pouring down rain. It's pouring down snow. It's snowing so bad. Like visibility is really bad. And our aunt lives like 45 minutes away. It's not like she's a neighbor. And so I immediately kind of pivoted and was like, I have a my best friend lives in the area. She's a paramedic. Like, I'm gonna call her and see if she can pop over. And luckily, by the grace of God, like she was available, she could get over there. She she drove over.

SPEAKER_02 23:45

They were on the way to the hospital.

SPEAKER_00 23:46

Yeah. Well, she gave, I guess that she gave my mom. And maybe you want to talk a little bit about how mom was responding. Yeah. She was not happy.

SPEAKER_02 23:54

Yeah, well, when I I got off the phone with dad, and then I called Linda because dad said, call Linda. And you know, I called my Lynn my I called my Linda. I called my aunt. I said, like, and like we text with my aunt all the time, but like she never gets a call from me. And so I'm sure she knew something was was wrong. And so I called her and was like, I'm so sorry to call you in the middle of the day, short notice, but like my dad has decided to go to the cabin and my mom needs to go to the ER. Like, is there any way at first I asked her to go pick up my mom? And I should have thought of Amber too, but that's you know, our family friend. But like I just didn't even when you're in like fight or flight, you're just like going down the list of caregivers. And so like I originally and she said, like, I think she was annoyed at my dad too, because she was like, Why would he leave? That is the question of the hour, but we have to move on from that question right now and focus on my mom. Um, he's like, Yes, I'll come. I'll be leaving in five minutes. And so she was like, I'm on the road, and that's when you that's when I called mom and I said, Mom, I don't want to alarm you, but you need to go to the hospital. And she, I I I hope mom never listens to this, but like she was basically a child, like you know, like a child having a temper, no, no, I don't need to go, it's not that bad. Yeah, she was very scared. She was like, I just had a procedure two days ago, yeah, and she didn't understand the problem to anyone, right?

SPEAKER_00 25:10

Like, I think for her, she didn't understand the that like this is not something you just suffer through in order to get better. It's not like, oh, yeah, it's cold and like it'll pass and like you'll be fine. It's like, no, you need a solution that can be done that's a no that literally as soon as you get your blood patch, you're gonna feel better. And yeah, and I didn't have to go to the hospital to get that done. And I don't, I just don't think she quite understood that. So, of course, yeah, even Amber said when she got there, she was like, Listen, you've got two choices. You can leave here in an ambulance or you can leave here with me. Like, what do you do? Yeah. Because she was feeling really, really sick, and ultimately, like she ended up. I know this is a long story just about this, but you can tell it was kind of a big this whole thing, it was a big piece of my mom's overall journey. The increased complications, how our family was handling it, um, how the toll it was taking on my mom. And so she she did go, she got the blood patch, she felt a lot better. My dad came back up from the mountains, met her at the hospital, took her home. We had a lot of family meetings regarding next times and what we learned. We learned a lot. In fact, I I said it earlier, but like the new rule is like after any kind of thing like this, you have to be with her for at least 48 hours after the symptoms subside, like subside. So, like if the headache would have gone away on Wednesday, then that 48 hours would have, and it's just it's just to be cautious and to make sure that everybody is on the same page and that my mom is protected.

SPEAKER_02 26:46

Yeah.

SPEAKER_00 26:46

But I will say that caused some other kind of quick things that happened really fast because the lumbar puncture was a really big deal for my mom, like, especially having that really severe headache and having to go to the hospital. Like, I will say, like, it wasn't just one of those things where like she could be like, Oh, well, that happened, but I'm okay. Like, she was very fragile after that. Like, she didn't feel well. She, I think, had taken a big emotional toll on her. The next week we had the next hurdle, which was like the another genetic counseling appointment, which was not no longer for the APOE gene, but actually to make sh to rule out several genetic mutations that could not only I think have potential for side effects of the IV therapies, but also potentially basically they have to, especially for my mom because she has early onset Alzheimer's, they have to make sure that like it's not going to be progressing so fast that it would make doing this entire thing not worth it. We heard on the next the meeting from the genetic counselor, she was basically like, listen, like we want to try to understand the reason that you are having early onset of this, because for most people, I mean, could just be luck of the draw, but if there's a genetic component that we can identify as connected to this, it might change the conversation around the IV therapy, and part of like the brain, the brain board needs to understand that as well. So we had quite a long meeting with her about the genetic impact and what are some of the things that could happen, and what was the family history, and all of these pieces of that. And you can just tell, like, even that was just weighing on mom, like the lumbar puncture, this this conversation.

SPEAKER_02 28:38

She's thinking about having Alzheimer's, like she's she was just already like in a I think like they kept saying too, you know, if your mom does have this, she doesn't, they don't think she will, and and for the record of the time of this recording, that's they're doing the test right now. We don't have the results from that yet. Exactly.

SPEAKER_00 28:56

But well, we did have the test results from the lumbar puncture at that time, which we hadn't reviewed with her doctor yet, but we had looked at them and we had noticed that the information from the lumbar puncture was very helpful in conjunction with the P Tau test from last year. Um, and it her tau levels were pretty high.

SPEAKER_02 29:16

Yeah, exactly. I was just gonna mention that I think um the other reason that why they are doing this genetic testing, why why they want a me and you on the call is because if she does have one of these very, very rare genes, there's a 50% chance that it would be passed on to me and you. Genetic mutations, yeah, yeah, the genetic mutations. And so like I think that was also weighing on mom being like, Am I gonna give this to my kids and my grandkids? And what's it for them? And I think it was just a lot for her to to handle.

SPEAKER_00 29:43

It was, oh go ahead.

SPEAKER_02 29:44

I was gonna move on.

SPEAKER_00 29:46

Well, I was gonna say, so then right after we got literally immediately after we got off. Yeah, yeah.

SPEAKER_02 29:53

So about I don't know, 10 minutes after we got off that call, which was a a while, and you could tell my mom was kind of overwhelmed, didn't really understand, using a lot of her brain power to recall. They asked a lot of um family history questions, and you know, she's like, you know, how old is my brother? You know, it's just very hard for her. I mean, for an hour and thinking about all this stuff, it was it was just a lot. And then within 10 minutes, I get a call from a 303 number for Denver with you know, my mom's doctors and stuff. I I always try to answer. So I answered and she said, Hi, you know, this is the specialist calling. Um, I have your mom in the other line. I wanted to go over your the results of the lumbar puncture and everything. And I really thought it was gonna be a a super quick call because you know, I thought it was gonna be like, hey, we got it back, everything looks good. Because like, you know, we'd been getting in all of the um blood tests and stuff, and like we've been like uploading it to our Claude project and like and like saying, like, tell us information. It's like, yeah, like all this looks good. Like the everything is like green light so far from what you know, Claude can be Claude again, not a it's AI, not a doctor. So we do not think it's a doctor, but it's a way for us to store the information and kind of process and everything. So anyway.

SPEAKER_00 31:01

You're trying to you are you're trying to understand it the best you can. So you're also thinking, like, what questions do I need to ask? What exactly how do I need to process this?

SPEAKER_02 31:09

Yeah. And so I thought it was gonna be a pretty quick call, and so I was like, okay, great. And we tried to call Felician too, but she was already in another meeting at that time, and my dad had run some errands, so it was just me and my mom. And she started going through everything, she said we got everything back. So, what the doctor discussed with us was her recommendations based on the results. I was expecting her to say everything looks great, you know, the next step is getting the genetics testing. I thought it was gonna be a 12-minute call. It turned into the same thing. Yeah, it turned into a 30-minute call of this doctor basically saying that the amount of tau in my mom's brain, not it and to be clear, would it not make her a candidate? But basically, the amount of that the IV medication would remove would basically have no effect to make it beneficial.

SPEAKER_00 31:55

Yeah, she was citing studies, right?

SPEAKER_02 31:57

Like she was saying because I asked her a bunch of questions. I was like, what is the margin? Like, like if it's like a difference of a person with X level of tau, they remove that to up to 20%, is it like 18%, or are we talking 1%? And so she actually spent a lot of time going through um finding the exact studies from the clinical research studies of the people that went through, um, and it was a smaller group um of those people, but of the people that had the about the amount of tau that my mom had, it was 0.5% difference, like basically compared to the people in placebo.

SPEAKER_00 32:31

Placebo. Yeah. Yeah, keep, I mean, keep going because I do think that that it turned into like a very intense conversation, and mom was on the phone, and then yeah, I was just asking a lot of questions.

SPEAKER_02 32:42

I was trying to I was trying to think to myself, what would Felicia ask? I think I even told the doctor that I was like, I'm just trying to think of questions I know my sister's gonna have for me. And you know, like both you and Linda and Linda always have tons of great questions, and I'm like, man, I should have thought of that. So I was just trying to like you know resonate with you guys and be like, what would they ask? And so I was asking like a lot of great questions. Yeah, and so I tried to ask a bunch of questions, like, okay, if we did go forward at this, what would that look like? Or is she, you know, like wait, I didn't say she's no longer a candidate, but and and I I really should probably go back and I should have gone back before this episode and like looked at the questions because it feels like a long time ago now. But basically, she said, like, yeah, it's like a half percent compared to the people with placebo. I'm not saying that you can't do it if you want to continue like still do the genetics.

SPEAKER_00 33:28

But in your notes, it said, I have not made my final recommendation.

SPEAKER_02 33:32

Yeah, she's like, I'm just here to tell you guys, like you were, I'm not saying you're not a candidate anymore, but the problem was that's basically what my mom heard. And and you know, in hindsight, I really wish I would have gotten that news and then said, Okay, mom, why don't you get off the call? I'll call you when we're done and I'll give you a synopsis of what's happening because I asked questions. Oh, that was that was the thing, is I asked a lot of questions that I felt a little uncomfortable asking with mom on the line, like, okay, with the high tau, does this change her prog prognosis? Like, do people with high tau decline quicker? Do they die quicker? And those were really hard to ask, but like you you don't get a neurologist on the phone very often, you know. I wanted to get those, but in hindsight, I wish I would have told mom to get off the phone or given her that option and then like afterwards call her and be like, oh, you know, like here's the thing, we're still going through it.

SPEAKER_00 34:22

But you were kind of in fight or flight just going with it because you didn't know. And like that's again one of the reasons why we're doing this entire podcast to begin with, is because if you ever find yourself in that situation, like I think all of us in the moment it's hard to slow down and think, okay, I'm about ready to ask this. What could the impact of that be on the person on this call? Like, is there any adjustments? And again, learning a lot because that must have been really hard to ask that with mom on the phone call. And I think it was hard for mom because mom just heard my prognosis. You know, she's not process it in the same way you are, right? And so, yeah, my mom heard was just a lot of people.

SPEAKER_02 35:08

I'm not a candidate, I have Alzheimer's, there's something wrong with me, I'm gonna die. Yeah, because because she did, you know, digressing quickly. Yeah, exactly. She did, because the doctor did. I mean, just just as if mom wasn't there, she answered everything honestly and basically said, like, you know, there's with people with early onset, like it basically reaches a cliff, and after that cliff, it it goes quickly. We don't know what that looks like. Every Alzheimer's patient is different, and she was clear when she said that too. But she's just saying, like, in the past, like these are the patterns, you know, that we see. Um, and so I it was just really, I think uh my mom heard things like that, along with coming out of that genetics, like literally just coming out of the genetics call where her brain was already very fatigued and she was sad, and only a week after the lumbar function and the ER and dad leaving, like well, I I think it's really important.

SPEAKER_00 35:56

That's like one of the things that I think you and I had to talk a lot about as we processed all of this was um how would you feel if you were in that situation, right? Like if it was happening to you and you had what felt like a terminal disease, is that the word terminal disease? Yeah, um, you would feel sad too, right? You would cry too if it was happening to you.

SPEAKER_02 36:18

And so you're so young.

SPEAKER_00 36:20

Yeah, and I think that's one of the things that like I've just been myself the word that I've been sitting with is like this is grief. Every single piece of her reaction has been valid grief, and it's something that we have to remember as part of her care team. Like, it's very easy for us to be action-oriented and to take the information in and try to make quick, swift decisions. But like her grief for herself is different even than our grief for her. But well, let's let's take that to the next part of the conversation because after that phone call, like I think you very quickly made a quick determination of what you thought was going to be the best next step. And then you had the responsibility of catching me up on what was said. Dad, Linda, dad, trying to make it make sense to mom. And then we had to all process our own feelings about whether we move forward or not, we whether we continue to move forward. And again, like you have to remember like all of this happened in a very compressed part of the timeline. Like the lumbar puncture, the spinal tap, the blood patch, the genetics counseling, this news, it all kind of happened in this kind of really compressed timeline. And so it, I mean, walk us through like what was your thinking? Because you had been very pro-anti-amy therapy until you got that had that conversation.

SPEAKER_02 37:40

I mean, I was definitely like disappointed. I mean, we had talked a lot, we've talked in many episodes before this about how we are having her to be a candidate. Like, we were really hoping that that would give her another, we were hoping three to five years of still traveling and knowing all this stuff and and being where she's at, and so like hearing that there's like it's just so hard because like, and I feel bad really in hindsight that me especially, I don't know about you, like talked to mom many times and said, like, no, like you should be so thankful that you are at an an age in 2026 where these IV infusions exist. Like, if you got this diagnosis five years ago, like you would have no options, and now we're basically saying, you have no options. It doesn't matter that you're in 2026. And that's and I think something to point out too is like we finally got her going to the Alzheimer's support groups for early onset. And the next day, after finding out she not that she wasn't a candidate, but that that she wouldn't be the best candidate.

SPEAKER_00 38:34

Yeah, this was actually like a point of contention for all of us, is like that that phrase of like mom's not a candidate, mom's not a candidate. I had to be the one to be like, everybody stop. That's not what was said. The notes clearly say if she wanted to do it, she could, but the actual harder question is is it worth it if it's is it worth everything you're gonna put into it and the risks that you're gonna take on potentially if you're not gonna get what you're trying to receive from it? That's a different conversation than I'm just not a candidate. And I I had to kind of be the stickler with everyone to say, I know that's a I I can be very literal, and like I know that's a harder distinction, but like that's what we need to talk about is is it it's our decision. Does she want to do it still despite the lower odds? And I think for all of us, like for for you, like the answer was no. Like, given everything I've seen, like the answer was no.

SPEAKER_02 39:37

Not only that, but I think we have learned as a family that mom has gotten to a point where she's not resilient enough to even do like even if she was a candidate, we've noticed her going to these any appointment that has Alzheimer's has to do with her Alzheimer's in particular, where they're talking about her Alzheimer's, doing anything for her Alzheimer's. She is taking her weeks to bounce back from. Are we really gonna have her go to these infusions and MRIs and stuff over and over week after week for potentially up to 18 months?

SPEAKER_00 40:06

Well, that was that was my big thing with that was my big thing with this entire conversation was, and again, there's no way to describe this. Like, you think that life is gonna give you like these little hurdles and you're gonna have time to reflect and like make an easy decision, and maybe that's some people's experience, but that was not our experience with this. For us, all of a sudden, one day, kind of out of the blue, we're looking at the picture of what's just happened, and like I'm just thinking of how she responded to the lumbar puncture and uh and all of that, and I'm just thinking, like, this is too much, like it is negatively affecting her to the point where like she's being more fatigued by the amount of appointments, the amount of mental and emotional strength she needs to have to even go through them. Like, this isn't making sense, and there are probably plenty of people out there who have different kinds of deficits with their Alzheimer's, where that stuff doesn't matter as much to them, right? But for our mom, we didn't know how that would affect her, but we were seeing up close and personal that the amount of appointments, the amount of talking about the Alzheimer's and the toll that was taking on her was too much to the point where you said it really well, like the word that just kept coming out to for me, and then that we talked about was like resiliency. Like she's just not if if she were a flower that we were being trampled on during each of these appointments, she was still on the ground versus popping right back up. And that's not again, if our mom ever listened to this, which hopefully she doesn't, but like it's not a character flaw. It is not something you muscle your way through. Like sometimes that's just the reality of your own situation. And I think it was really important for us as part of as her daughters, as her care team, to really say, like, is this what's best for her? And I think we all really quickly realized that week, given the clinical trials, given the information, given her levels, given the situation, that it likely wasn't best. And then we had to let mom sit with that, and that was so hard.

SPEAKER_02 42:15

That was so hard because she was so sad, and then she tried to do the right thing and go to the Alzheimer's Association support group the next day. And fortunately, I mean, good for these people, but unfortunately for her, she had to hear multiple people talk about how they're starting the infusions and it's how it's helping so much and how they're so excited. She was just so sad, and like that was just the cherry on top.

SPEAKER_00 42:37

She was. I think it was like really dark, dark days. Like the grief was extremely overwhelming. And again, it's like we just want to protect her. We just want to be like, don't go to the support group, don't, don't any of this. But like, I've had to kind of tell myself as well as like all of us, like, it's okay. Like, sometimes in life, you're gonna hear things that are not great that make you feel sad. Like, it's part of this journey, and like we're all in it together, and like, you know, mom, like, we love you, and we're gonna figure this out. And one of the most important things that doc the doctor said on the call was, you know, yeah, there's these these anti-amyloid therapies, but you can see significant results in increasing your exercise and getting your heart rate up and doing doing what's already good for your brain. And so we've exploded well, the first thing we've been trying to do with our mom is just get the resiliency. Like she's got it pop back up off the ground. Like we were like, we need to, we need to lower the stress, we need to calm everything down, we need to get her feeling a lot better and be in a better, better mental spot. And then we need to start working on making her feel like she has agency in getting to the gym, trying a Zuma class, whatever that needs to look like. To the extent that she can make that happen, like we want to empower her with those things too.

SPEAKER_02 44:04

She did tell me today she's starting to run with Bella. I told her that that's her dog. I told her that 10 seconds of running is not what the doctor meant.

SPEAKER_00 44:13

What's she doing?

SPEAKER_02 44:13

Like what do we have any idea like how far she's going or anything? I told her that because I knew she wasn't going for a long time. She was like, Oh like I think she's thought like get your heart rate up and like you check the box. And I was like, no, like that's like it's like 20 or 30 minutes of like prolonged stay at the heart rate. I was like, that would be like I told her like that's why you need to go to like the YMCA or the gym or something and just walk at an incline. That will get your heart rate up, but you don't have to like like run and and and stuff. And she was like, Well, I'm scared of the treadmill because you like if you don't keep up with it, it'll go. And I'm like, No, that's not you're not running, you're just walking at a slight incline. But she is thinking about it because it has been about what a week and a half, maybe two weeks since all that, and and she is finally the last couple days starting to get back to herself and it could be a while.

SPEAKER_00 44:57

But I called her and asked her to do Zumba with her, so like maybe yeah. Yeah, see, this is why we talk.

SPEAKER_02 45:06

So yeah, um well, it's because she's gonna tell you that ten times, but I'll she'll never tell me that.

SPEAKER_00 45:11

Well, I mean, I think that I I don't know. Obviously, this was a long update, but it's it's been a really big part of the journey. We wanted to one again, we're trying to document our journey so we remember it, I guess. And but also like I think there's a lot of takeaways we had takeaways as caregivers regarding the conversations, and ultimately, like, we're just trying to figure out in lifetime like what's gonna be best for my mom or your mom, our mom. Yeah, exactly. Anything else you wanted to say in terms of where we are now?

SPEAKER_02 45:49

Well, I guess the only last thing I was gonna say is, you know, me something me and Felicia have been considering is writing a note to her doctors, writing a note to her doctors saying, like, basically what we've seen of like anytime there's like an Alzheimer's-related appointment, it's really hard for her to get back because she can't comprehend what is happening in those appointments. She's only hearing the negative things and sticking to that for weeks. Like, can we get on a call first to go over everything and then or like or or I mean, I'm sure she's not the first patient like this. Do they have any like recommendations? Like they can send us a summary of everything in detail first, maybe through the portal, and then I don't know, but that's something we can I think that's what I think the next step.

SPEAKER_00 46:29

I mean, I wanted to before I press send, because I did have it all drafted for to send out, but I wanted to see how things went once she kind of came to terms with the new path forward, once she kind of restored a little bit, like to just make sure, see how she was doing with it. Because if it's only gonna be, you know, two times a year, like maybe it's not as big of a deal than like eight appointments in a six week's period. But to Amber's point, like I do think what I'm looking forward to is trying to ask them what are the best practices here? Because clearly it's like a very overwhelming process. And like I'm a big advocate over like, I don't want her to lose agency. I don't want her to feel like everyone's making decisions for her and like she doesn't have her independence or a say-so in what's happening. But if it's going to be affecting her negatively, then like we need to figure out the way so that we can get our questions answered, but also take care of her. And so we don't have an answer on that yet, but it's something we're gonna be figuring out. Exactly.

SPEAKER_02 47:29

Yeah.

SPEAKER_00 47:30

All right. Well, thank you so much for joining us today. We'd love to, if you have any feedback, if any part of this resonated with you, you know, we'd love for you to um give us a message, let us know what you're thinking, and then of course, if this is helping you in any way, please feel free to share this um episode, this podcast with other people that you know. And if you can leave us a review, that would also help us spread the word.

SPEAKER_02 47:54

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. The Alzheimer's Association is a free 24 7 resource available to anyone who needs their support. Whether you're newly diagnosed, deep in caregiving, or just trying to understand what comes next. You can reach them anytime at 1 800 272 3900. You can also reach them online at alz.org.