Robin's Story: From Dizzy to Dead in 27 Days

Summary

Episode Summary: "Robin's Story: From Dizzy to Dead in 27 Days"

Podcast: The Medical Detectives
Host: Dr. Erin Nance and Anna O’Brien
Release Date: June 4, 2025

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Introduction

In this deeply personal and emotionally charged episode of The Medical Detectives, Anna O’Brien shares the harrowing journey of her mother's rapid decline from dizziness to death within just 27 days. Unlike previous episodes where individuals recount their own medical mysteries, this installment focuses on Anna's perspective as a daughter witnessing her mother's sudden and severe health deterioration.

The Onset of Symptoms

The story begins on April 19, 2024 ([05:53]), when Anna notices significant changes in her mother's health. Anna's mother, a dedicated RN and active participant in her grandchildren's lives, starts experiencing severe dizziness and nausea. Despite having normal blood pressure and heart rate, her symptoms worsen upon standing, suggesting vertigo.

Robin: “Mom, you need to get out to a doctor, and if it gets worse, you need to call me.” ([06:04])

Anna, utilizing her expertise as a medical coder, immediately begins assessing her mother's symptoms, suspecting a diagnosis of vertigo. However, her mother's refusal to seek further medical help sets the stage for the unfolding crisis.

Rapid Progression and Medical Uncertainty

Within days, Anna's mother’s condition deteriorates rapidly. Post an initial visit to urgent care, where she is diagnosed with vertigo without receiving necessary anti-dizzy or anti-nausea medications, her symptoms escalate. Anna's mother becomes increasingly agitated, disoriented, and begins exhibiting erratic behavior, such as acting as if she’s intoxicated.

Robin: “Something has to be here. They’re missing it.” ([19:02])

Despite multiple medical tests—including EKG, EEG, labs, urine tests, and CT scans—doctors remain baffled, unable to identify the underlying cause. Concerned by the unexplained symptoms and inconsistent behavior, Anna hypothesizes a rare and fatal condition: Creutzfeldt-Jakob Disease (CJD), a prion disease.

Advocating for a Diagnosis

Anna's relentless pursuit of answers leads her to research extensively, eventually connecting her mother's symptoms to CJD. Despite skepticism from some medical professionals and friends, she pushes for an autopsy to confirm the diagnosis.

Robin: “I want to make sure I get them right.” ([36:00])

After overcoming significant obstacles, including resistance from the funeral home and the initial reluctance of the Prion Institute, Anna successfully arranges for a mobile autopsy unit to examine her mother's brain. The confirmation arrives after 12 weeks, definitively diagnosing her mother with CJD.

Robin: “It closed a chapter for me and gave me so much closure.” ([69:53])

End-of-Life Care and Closure

As her mother's condition worsens, Anna wrestles with the decision to place her in hospice care. Despite her mother's refusal to be admitted to a nursing home, Anna prioritizes her mother's comfort and dignity during her final days.

Robin: “I have no regrets. None at all. I did everything that I could do in my power to make her as comfortable.” ([80:43])

On Mother's Day, Anna orchestrates an unforgettable farewell, ensuring her mother is surrounded by loved ones and receives compassionate end-of-life care. The episode culminates in Anna receiving the autopsy results, providing both sorrow and relief by finally understanding the cause of her mother's rapid decline.

Insights and Reflections

Throughout the episode, Anna and Dr. Erin discuss the importance of advocating for loved ones within the medical system, especially when dealing with rare and rapidly progressing diseases. They emphasize the necessity of having difficult conversations about end-of-life wishes and the value of being informed and prepared.

Dr. Erin Nance: “The greatest gift you can give someone is doing the preparation for your own death.” ([84:01])

Anna reflects on the challenges of navigating the healthcare system, the emotional toll of witnessing her mother's decline, and the significance of her mother's legacy in driving her commitment to medical storytelling and advocacy.

Notable Quotes

• Robin: “A true friend is not just there when the times are hard, but someone who can unabashedly celebrate you for your wins 100%.” ([00:44])
• Robin: “When she started acting a little drunk, I was like, okay, but it's not consistent. And I know there's gonna have to be a time period where it needs to be more consistent.” ([50:15])
• Immortal Mother: “Do not pass go. Do not collect $200. You're going.” ([16:02])
• Robin: “She was eating. They gave her food because she was hungry and they wanted to see her eat. And I was like, she's choking on this food.” ([18:00])

Conclusion

"Robin's Story: From Dizzy to Dead in 27 Days" serves as a poignant exploration of the intersection between medical mystery and personal tragedy. Anna O’Brien's unwavering determination to uncover the truth behind her mother's illness underscores the critical role of patient advocacy and informed caregiving. The episode not only sheds light on a rare and fatal disease but also highlights the emotional resilience required to navigate such devastating circumstances.

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For those seeking deeper insights into similar medical mysteries or looking to understand the importance of patient advocacy, this episode offers both a compelling narrative and valuable lessons.

Transcript

[Erin]

Hello, Erin.

[Robin]

Hi.

[Erin]

Before we get into this episode, I just want to say I'm so proud of you.

[Robin]

Oh, thank you.

[Erin]

If you guys did not know, Erin's book officially came out yesterday and she crushed it. And you, you know, we just need to celebrate when our friends succeed in ways that aren't babies or marriages, because I think, like, we spend so much time celebrating those things in our life. But there are other monumental moments as a woman, and I think this is one of those moments. So congrats.

[Robin]

Thank you. I mean, I really feel like a true friend is not just there when, like, the times are hard, but someone who can unabashedly celebrate you for your wins 100%.

[Erin]

And I am your biggest cheerleader. If you haven't checked out the book, guys, it is actually phenomenal. I've been reading it. If you follow me online, you've seen me talk about it in my stories. It's a really great book, especially if you're passionate about medicine and people like Erin who are changing it. So it's lovely.

[Robin]

Thank you. And I really, I think a huge part of the success of Little Misdiagnosed is because of the Medical detectives listeners. I don't have the official statistics, but I'm pretty sure that each and every one of you pre ordered a copy of my book to make it so successful. And if you hadn't yet, I would love the support. But also if you love these stories that we talk about on the Medical detectives, this book is about those same patient stories, you know, from my perspective and how those stories can shaped me into the doctor I am today, being able to deliver this type of content. And I mean, obviously this podcast has been just an amazing opportunity to spend an hour really doing deep dives into individual stories. And I feel like that really all along has been my purpose in that I am the medical storyteller. And I actually just Jay Shetty's commencement speech, but he said, your purpose doesn't have to be your job. Your purpose doesn't have to be what makes you money. Your purpose can be something you do on the weekends. Your purpose can be something you do here and there. And I think for so many of our listeners also, they have really taken charge of their own health, and their purpose is to share their message with others.

[Erin]

And I think we have a really great example of that. This week it's a little bit different because this week, guys, it is not someone telling their own story. It's telling the story of their parent. But it, for me, added a lot of context. Into sometimes why a diagnosis is important, even when it won't change the medical outcomes.

[Guest]

Absolutely.

[Erin]

I'm trying not to say any more than that because, guys, it's a really good episode. But, like.

[Robin]

And also, one, I want to tell people that I think a lot of our listeners are people who actually have medical mysteries and medical misdiagnosis. But this is a really important one to share with the people in your life who are your supporters, who may be the caregivers, because this is really the point of view of someone who is watching their family member slip away.

[Erin]

Yes. And I think if you are in that situation, there's a lot of insight into how to cope with that. And we'll talk a little bit more after the episode. Kind of what that taught each of us individually, because I think we both thought about some things maybe we hadn't thought about previously, or maybe not as in depth because of this episode. But with that. Just listen to the episode first.

[Robin]

Guys, enough about us. Let's get to the show.

[Erin]

Yeah, let's get to the show.

[Robin]

All right. Hi, Robin. Welcome to the Medical Detectives. Thank you so much for joining us.

[Guest]

Thank you for having me. I'm really excited to be here. I can't wait to tell this story.

[Erin]

And we're excited to have you.

[Robin]

Well, Robin, I think you are our first guest who is telling the story on behalf of a parent. So what I would like to do is start by asking, could you describe your relationship with your mom when you were growing up?

[Guest]

So she was pretty awesome. I will have to say that she was in RN and I was an only child, and it was just me and her and my dad. She was a great time. Like, as a kid, she was a good mom, but we were really close as adults. I like my relationship with my mom as an adult much more than I did as a kid because she was just, you know, on top of everything, super strict. It had to be this way. Da, da, da, da, da. I'm gonna run the show. But as an adult, it was like, hey, Robin, let's go to Carrie Underwood. And I'm like, yes. And she was an active participant in her grandchildren's lives. Even my oldest that I adopted, she's like, active participant. She's like, oh, I'm gonna go to this. I'm gonna do this. I want to pick up this one and this one and go there and do all these things. So she was always constantly in and out of my house, or I was in and out of her house. Like, we were always with each other. All the time.

[Robin]

So talk to us about when you feel like things started to change.

[Guest]

April 19, 2024.

[Erin]

Oh, my gosh.

[Guest]

His mom really noticed it.

[Erin]

Super specific. So something happened on that day.

[Guest]

April 16th is my second child's birthday. And of course, my mom picked up my kid from school and said, I am gonna take her out to lunch, and we are gonna have lunch after school, and we are gonna do some things and have fun. And she came home. Now, mind you, this woman picks my kids up from. This is April 19th. She picks my kid up from school, takes her out to lunch. She's driving in traffic, pays for everything, does some stuff with her, brings her home. And I'm in my kitchen, and I'm wrangling kids. I'm doing lunchboxes, doing this, doing that. Fourteen things. And I look at my mom, and she doesn't look right. And of course, my mom and I, we will run down a list of symptoms. Okay, what are your symptoms? What's going on? Because I'm a medical coder, so that's part of my job, is to look at signs and symptoms and apply the diagnosis codes. So I look at her and I'm like, what is wrong with you? What's going on? She was like, I am so dizzy all the time. Dizzy. What's your blood pressure? What's your heart rate? What's going on? And she was like, no, that's fine. My blood pressure is good. I've checked that. I'm just really dizzy, and it's making me nauseous, and I almost can't eat. And I was like, okay, is it when you sit up, or was it when you sit. Is it positional or is it all the time? She goes, well, sometimes it's right when I stand up, it gets really bad, and it's like, whoosh. And I was like, vertigo, Vertigo. This is some vertigo. This is what you have. And she goes, are you serious? I said, mom, you need to get out to a doctor, and if it gets worse, you need to call me. And she left, went home. I hadn't heard from her. I was doing bath time, bedtime, you know, the whole routine. Dinner, talked to my fiance about it. And he goes, let's go check on your mom. I said, okay. Now, he's retired military. He also has medical training. So he goes, let's go check on her. So we run over there. She's not home. I'm, like, checking my phone, and I'm like, where's her location? Because I track my mother. Because the hardest person to raise is your adult parent. So I'm like getting on her was like, well now it says she's over here, go that way. He's like, okay. I'm like, we're going towards her and then we end up passing her, but then we notice that she turns around so we pull over and stop. And then she's going back. And I'm like, where are you? Where were you? She goes, oh, I went down to the little urgent care. We have a hybrid where it's like and ER and urgent care together, one big unit, but it's not like a hospital. So I said, okay, what happened?

[Medical Expert]

She goes, oh, they diagnosed me with.

[Guest]

Vertigo, but they wouldn't give me any anti dizzy stuff and nausea stuff. And I was like, what? Well that's stupid. I was like, why not? You're clearly dizzy and nauseous. Why wouldn't they? And she was like, I don't know. I don't know if that was true or not. And she went home and she goes, but I have anti dizzy and anti nausea stuff at home. And I was like, okay. So my mom's house was like a pharmacy. Nurses tend to hold on to every medication they've ever been prescribed. So I was like, okay, well make sure it's not super expired or anything. And she goes, eh, it'll be all right. Yep. Okay. So she goes home and I said, make sure you call me in the morning. Make sure you keep in touch with me. Well, we talk like seven times a day, so if I'm working, it's nothing for her to call me at 9 o' clock in the morning when she wakes up, and then two hours later, and then two hours after that, and two hours after that, and 2 hours after that, so on and so forth. Because she found something on TV that she wants to buy or she wants to go to a concert or she wants to buy a boat or, I don't know, she talks to me about all these things. So I call her the next day and I can't get a hold of her in the morning. And I'm like, she's not feeling good, so maybe she's sleeping in. Okay, I'll give her that. So then I call her later on and she goes, well, I called Kathy, which was my late stepfather's caregiver in home caregiver, and I wanted her to come over today, but she can't. So she sent her twin sister over to just help me. I'm so unsteady on my feet with this dizziness. And I said, okay. Because, I mean, it was really starting to make her very dizzy. But Kathy's over, or Kathy's the caregiver's sister. I can't remember her name, but they're over there, they're shopping and doing all these things. But she seems really agitated and aggravated. She's saying she can't sleep well. She's saying she's nauseous and she's vomiting and just all of these symptoms. And I'm like, some of these are not adding up. And she seems really agitated, aggravated, angry, more so than normal, because she can get that way and snapping at me. And I'm like, all right, listen, here I am here to help, not hurt. And she's like, I have all this stuff to get done. My house needs to be clean. For what? You're sick. Just be sick. Can't you just be sick? You're okay, so then move to Friday. And I try to get a hold of her all day, like, all morning. And I'm calling and calling, and my gut, my mom gut is going off, and I just have this horrible feeling in the pit of my stomach.

[Medical Expert]

But I'm at work, so I can't really do much.

[Guest]

And I pick up the phone, and my best friend, Janae, I call her, and she works third shifts, but she works, like, Sunday, Monday, and the earlier part of the week. And I call her, and I said, what are you up to? She was. I was getting ready to leave to run errands. Okay, great. Could you add one errand to that list? She goes, what's up? Go to my mom's house, check on my mom. She's like, all right. She goes over there. And in about an hour, I get a phone call from her, and she says, robin, you need to take your mom to the hospital. I'm like, janae, what's going on here? She goes, I'm doing a stroke assessment. She's hitting some of the marks for stroke, but there's other plethora of symptoms here. She's really dizzy. She's really disoriented. She walked over to the stove. She turned it on. She walked away from the stove. And I was like, what? She's crying one minute, she's not happy and laughing the next minute, her emotions are all over the place. She goes, I'm trying to get her to go to the hospital. And I'm literally listening to them on the phone argue back and forth because this is, like her pseudo daughter. This is my best friend. We've been friends for, like, 20 years. And she's like, I'm not going to the hospital, and you can't make me. I'm like, okay. And she goes, I'm gonna stay here with your mom and see if I can talk her into going. I think she's okay. Ish. To be on her own for, like, an hour or two. I'm gonna assess everything further. And she goes, I'll call you when I leave here. And I was like, all right. So she's babysitting my mom. So I get off work, I arrange for kids to be picked up. I rearrange my whole life, and I hightail it to my mom. And I said, you're going to the doctor. You're going to the hospital. Do not pass go. Do not collect $200. You're going. She goes, I am not, and you can't make me. And she goes, I want that patch. I want the dizzy patch. And she couldn't think of it. I was like, okay, she's dizzy, so it's going to be hard to think of things. I get that. But that's not my mom. She's not acting like my mom. I'm like, this isn't her. And so I lied to my mom, and I said, listen, I'm talking to a friend of mine that works at that hospital that you go to, that's in your network. And she said, if you come in within the next hour now, you have to pretend to be a patient. Like, you have to go through the whole process, but she will absolutely get you those patches. She'll be your nurse. I'll text her the whole time, and she will be get you those patches. And she goes, are you serious? I said, yeah, she bought it.

[Erin]

You are a great scam artist. I hope you never try to pull one over me.

[Guest]

No, my mom should know better. I'm like.

[Erin]

I knew right then and there.

[Guest]

I was like, you are sick. Something's wrong. You bought that? Are you kidding me? I love you.

[Robin]

I love that.

[Erin]

The.

[Robin]

The contraband is a scopolamine patch.

[Erin]

Is that what it's called? A scapola patch?

[Guest]

Yeah.

[Erin]

Although she's like, oh, she's going to get me the good drugs. The dizzy patch?

[Guest]

Yes. And so I get her in there, and this nurse is triaging her. We're getting things going. I was like, you know when she's filling out paperwork, and I'm like, that's wrong information. And she goes, robin, just fill it out for me. That hit hard. That hit so hard. I was like, oh, God, something's really Wrong. She knows this information like the back of her hand. She memorized her credit card numbers, like she knew all of them. I'm like, you know this information? So I get her back there, and these nurses are looking at me, and they're going, and she was driving a car two days ago? Yeah, that's right.

[Erin]

She was taking your daughter around, right?

[Guest]

Yeah, yeah. Oh, I said two days. Two to three days ago. She was baseline with a slight dizziness. She was completely baseline. Slight dizziness. This dizziness is progressing to a point where we can't walk straight lines. We can't stand up. We are going to fall over. She needs assistance walking. She is disoriented. She is not remembering things. She says she hasn't eaten. She says she's not sleeping. She says she's vomiting. And they did a whole workup. So they did an EKG, they did an EEG, they did labs, they did urine, they did CTs, everything. And then they were like, we can't find anything medically wrong with her from a medical test. And I'm sitting here on her my chart, and I'm reading these things, and I'm going through this because I know how to interpret these things. And I'm like, why isn't anything showing up? Something has to be here. They're missing it. And this nurse comes in, he goes, this isn't right. I can't send you out of here like this. I was like, yes. And I noticed when she was in there, she was eating. They gave her food because she was hungry and they wanted to see her eat. And I was like, she's choking on this food. But then it went away. But then she started choking on the food again. But then it went away. And I'm like, what is so. He's like, I want a swallow test. I want an mri. I want one with contrast. I want this, I want that. I'm calling neuro. We're gonna do an observation. You're admitted for observation. We're gonna go on to the observation unit. So that's at least 24 to 48 hours you're there. And one of the nurses is saying.

[Medical Expert]

I don't feel like this is vertigo.

[Guest]

And I was like, yeah, I don't. It's something else. There's something more here. There's something going on. So I called my Aunt Pam. I said, hey, can you come sit with her the next day and pop in? And she said, yeah, sure, not a problem. I'll come pop in. I have to head to Michigan for a gymnastics Competition. Because I'm that mom and.

[Erin]

Of course you are.

[Guest]

Of course you do everything.

[Erin]

You are your mother's child. Makes sense.

[Guest]

Yeah. So Aunt Pam's with her and they're doing the things and she was like, oh, she's just a little confused, but that's because she's dizzy. Everything's fine, it's fine. She just has to get into an ent. But they gave her the patch.

[Erin]

Wait, again?

[Guest]

Well, they, I mean it's one of those things that they gave it to her, but it's like you have to take it off and then you have to put it back on.

[Erin]

Gotcha.

[Guest]

Like you just can't keep it on the whole time. There's, I think it's like two days. It'll last.

[Robin]

It's like 48 hours.

[Guest]

Yeah, 48 hours. Something weird. So you take it off after 48 hours and then you can put another one on, but they recommend it in a different spot and usually it goes behind your ear. And so she was there and she got released on the Sunday and they.

[Medical Expert]

Just said it was vertigo, she had to see an ent, and they sent.

[Guest]

Her home and I was calling her and talking to her and you know, I came home to sit with her and chat a little bit here and there and she seemed a lot better with the anti nausea medication and the skull patch. So when I get her out of that hospital we have that weekend, she gets out on the Sunday, I call her doctor and set up an appointment because she was still kind of out of it. And when I called and get her appointment, I called Monday morning first thing and I get an appointment and I can get her there at 9 o' clock. And I called my boss and I said, hey, I've got to take my mom to the doctor and I may need some FMLA paperwork. And she said, is everything okay? I said, I don't know.

[Medical Expert]

And right before we left for that appointment, I walked into her bedroom and.

[Guest]

I hear her saying, hey Siri, who is the president? Hey Siri, what is today's date? And she's googling the questions that they're gonna ask for the cognitive exam. And I'm sitting here and I'm like, she can remember the questions because that's long term memory for her, but she doesn't know the answers. I literally just kind of laughed because one, it's kind of funny, but two, it's also really sad. And I realized, I was like, okay, there's something seriously wrong here. And I was like, mom, I cannot believe you're doing this? Do you not know the answers? Well, I want to make sure I get them right. Okay. So I got the Filmella paperwork, and I went to her doctor's office, and we were sitting there, and I got her into the appointment. And while we were in there, this is the first time that I met this pcp. And I love this doctor. I love this doctor. But when she came in, she goes, connie, why are you here? I just saw you a couple weeks ago, and I was like, I didn't know you had an appointment. You tell me everything. Okay. What's going on? So she's explaining all the symptoms, and she's explaining everything, letting my mom explain to her everything that's going on. And all of a sudden, she's just. Stops talking and just does this kind of. And gazes off, like, totally gone. I was like, see? See what's going on here? See? See this? Hello. I'm sitting here looking at the doctor. The doctor's looking at me. We're giving each other the eyes, and I'm like, lady, do you see what I see that's going on? And she looks at me, and she was like, big O eyes. And she was like, okay. And she's, like, starting to type faster. And my mom goes, yeah, you know, I've been a little confused lately. You think? So quick question.

[Erin]

What is FMLA Paperwork?

[Guest]

Fmla? So Family Medical Leave Act. So if you need to take time off, you don't lose your job.

[Erin]

Oh, okay. I. I didn't know that that existed.

[Guest]

Yeah. So you get paperwork and you have a physician fill it out. And I said, listen, I may need this just in case I was covering my basis.

[Erin]

Gotcha.

[Robin]

Wouldn't say that. It's something that most people would be top of mind to ask their employer. So for you, I feel like you must have had some really ominous feeling. It was my even. Yeah. To even to. To ask for that.

[Guest]

It was just everything was changing every single day, and I just. I just said, nope, nope. I would rather be safe than sorry. She has this vertigo thing going on, and I don't want anything to happen where I can't be there, potentially lose my job.

[Erin]

How did that feel? To suddenly have gone from a perfectly healthy mom to see all these changes so rapidly?

[Guest]

I was floored. I was floored. I just. I didn't know what to think of it. And I. Honestly, throughout this whole process, a conversation that we had kept echoing in my mind. And I'm the kind of person that's going to ask the hard questions and have the hard conversations, as you should, with all of your older family members. Hey, if you have Alzheimer's dementia, do you want to be on those medications, or do you not want to be on those medications? And that is one of the specific conversations that I had with her, and I will never forget it. And it was echoing in my mind because she said, don't you ever put me on Alzheimer's dementia medications. I will not go on them. The outcome is no different. I know what the outcome is, and let it go. If I'm gonna go, let me go. I said, okay. She goes, but, Robin, you don't have to worry about that, because when I go, I'm gonna go quick, fast, and in a hurry, and ain't nobody gonna stop me. Oh, okay, mom, why would you wish that upon me? Like, why would you wish that? She goes, I don't want to suffer, and I'm gonna go fast. I was like, okay. And this was like, three years ago that I had this conversation with her, and that just kept echoing through the whole thing. So Eric and I went over to her house one evening to help get. She could be left alone for like, a. During that, like, first week, I'm gonna call that week one. She could be left alone for a couple hours here and there. And Eric and I went over there. And of course, I'm going through her house doing this, that and the other, trying to get her some dinner together, get her this, get her that, get her meds together. And Eric and I are talking about this this whole time. And I told him, I said, you know what? My gut is saying that this is rapid progressive dementia because she's confused, she's disoriented, and everything is just the dizzy. Maybe she has vertigo and this. But, like, this is rapid progressive dementia. This is what this is.

[Robin]

And for that, for those who don't know the difference, I would say most people think of dementia as Alzheimer's dementia, which is a slow, gradual progression. It starts with forgetting, mixing up people's names. Then it's forgetting where you put your keys. Then it's forgetting what Stripes street you live on. You know, very, very slow. The other type of dementia, sometimes it's called Lewy Body dementia, or rapid progression is when it's more of a step wise dementia. And so you have these big drops in cognitive function, and then you're okay for a little bit, and then a big drop in cognitive function. And that's. That's how that works, right?

[Guest]

Yeah. So it was like every day, everything was changing. We went from dizzy. And we would get better, and then we got worse, and then we got better, and then now we have new symptoms of we are forgetting everything and we are disoriented and we're confused. And then it progressed into. We were having hallucinations. And I was praying as hard as I could to get her in to this ent, because I didn't know what else was going to happen next. And every day I'm living like, okay, what new symptom are we going to have today? Because it's going to change. And it was going fast and it would not slow down. And everybody was trying to care for her as much as we possibly could. And I was taking control of her meds, I was paying her bills, trying to make sure everything was being paid because she couldn't figure out how to work her iPad.

[Erin]

I mean, at that point, you have to step in and take care of everything.

[Guest]

And, like, you know, doing her laundry and cleaning her house. It is every day we are going to my mom's house. Everybody is. And once we get her in bed, we're good. So I think until she starts waking up in the middle of the night and she calls me at like 3 o' clock in the morning because she fell in the garage. And I'm like, okay, we're on our way.

[Erin]

So at what point did you start thinking that you might actually need to, to do some more advanced cares? Is this it?

[Guest]

Yeah, I. I go, okay, we gotta figure something out. I'm gonna need around the clock care. So I end up calling my dad and I said, listen, I think I'm gonna need around the clock care for her. I need to get some more things going and figure out how to implement this and how to pay for this and how to do all of these things. And he goes, don't worry, she can pay for this. I know how to help you with this. We'll get it all figured out. And I have a recommendation. And I said, okay, who's your recommendation? And he goes, marianne. And I love this woman. I love this woman so much. She was my saving grace through all of this. So I set up to have a meeting with her, but before I could have that meeting, my mom ended up having a seizure. Janae was with her, which was really hard for her to see that her second mom had a seizure. She had to call 911. Of course, I had to go immediately leave work. And she went in and she did have a seizure. She was on seizure protocol, so that got her admitted. And I was like, yes. Okay, we're admitted. They're like, okay. Her primary care did refer her to neuro. I got her own appointment. It was two months out.

[Erin]

That doesn't surprise me. I have a neurologist. I waited six months, months for.

[Guest]

I called every day and begged and pleaded for them. I called every single day, every morning. Do you have a sooner appointment? Is there a way? Can you please give the doctor a message? By the time she had the seizure, I was calling and saying, she's not going to make it. She's going to die before this appointment. Can you please, please tell them that she is going to die before this appointment? And what did they say? They were like, we're gonna send a message over. I'm so sorry. I apologize. And at one point, I stopped calling because I could see what was going on. I had told Eric that this was rapid progressive dementia, and he came up with, no, honey, I think your mom has mad cow disease. And my response was, boy, shut up. I do not want to hear that noise. And then I started researching the signs and symptoms. And in animals, it's mad cow disease. In humans, it's Crott Jacobs disease. So it was probably two days later. And of course, this disease progresses so quickly every. Every couple of days. Everything is changing. I really was diving in on the Internet, researching. My best friend, Janae was researching, and I looked at him and I said, I think you're right. I think this is cjd. I think this is what she has. So when I was Googling and looking through this, I found cjd. And I was reading through the variants, and all the boxes were being checked except for that one. I had found an article locally where a man locally had this. And the wife had stated that he appeared like he was drunk. And that's where I really was like, I need that symptom. And I hadn't got that symptom yet. But when I looked through that variant, and I use really good sources, I'm not using WebMD. I'm looking for the treatments, and I'm not finding anything. And I read. I remember this. I read, there is no cure. This is 100% fatal. There is no treatment. Those were the words that I read. And that was just devastating. I literally lost it. I threw my phone across the room, and Eric looked at me. He goes, what's wrong? I said, It's 100% fatal. There's no treatment, there's no cure, there's nothing. It says that no one has lived past a year with this. From onset of Symptoms. How do I know her symptoms didn't start earlier? We don't live together. And he said to me, he goes, we just need to take the time that we have now and just spend the time we have now. And I was spending every moment I physically possibly could with her. And I messaged her primary care, and I said, please do not think that I'm absolutely insane, but I think that my mom has cjd. And she called me about two hours later and said to me, I'm not even going to pretend like I know anything about this. I actually had to research it myself. This is super rare. I don't even know how to test for it. I said, well, I've been doing research. And I found the Prion foundation and then I found the Prion Institute, and my best friend called the Prion foundation and they told her that if we can get the EKGs and send them to the Prion Institute, that they could possibly read them and see there's a special wavelength that it'll do and you could pick it up on there, but it has to be from them because they know how specialized do it. Medical records takes 30 days, and at.

[Medical Expert]

This point, we don't even know if she has 30 days. And the only other way to test for this is a spinal tap. But my mom was too sick at that point for us to be able to do that as well.

[Erin]

I'm going to take a brief pause. How did your fiance get to mad cow disease?

[Guest]

He literally googled what causes rapid progressive dementia while he was sitting with my mom, while I was running around the house like a chicken with my headgun off.

[Erin]

Isn't that from eating, like, bad meat?

[Guest]

Not all the times.

[Robin]

So this form of prion disease, which I want to have. Robin, finish the story before I go into detail as to describe what it is, but is something that, for the most part is in the definition is actually called sporadic.

[Erin]

Right.

[Robin]

So it just comes out of nowhere. There is a smaller percentage that is genetic and then probably a smaller percentage that is transmissible. Like the mad cow disease problem.

[Erin]

What a fiance.

[Guest]

That is.

[Erin]

Okay, so you. You have this. How does that make you feel? Does that. Are you more at ease? Are you more stressed out? Like, how does that change?

[Guest]

I knew what it was and I was talking at this point, like, all of her friends are calling me and family members that I was trying to talk with, and I told some of them my hypothesis, and they're like, yeah, no, that's too rare. But rare things happen. And once she got further through things, everything started lining up. I was like, all right, here we go. We're checking boxes, we're checking boxes. But there was one box that wasn't. That hadn't been checked yet. And once she was admitted to the hospital on that seizure, that's when we went upstairs. We did the seizure protocol. We had neuro come in, we had psych come in. They diagnosed her with Lewy Body Dementia, like rapid progressive dementia. He said, well, this is some form of rapid progressive dementia. Your mother is a very highly educated, intelligent woman that had all of her facets about her. And then all of a sudden she doesn't. And this is just a big step down. While she was in there, the. The hardest part was the day she forgot who I was. Luckily, she remembered me two days later, and I was like, oh, thank God. I just don't want you to forgive me now. She would confuse me and my child. So she was like, beta, I'm not Veda. She goes, oh, no, Robin. And point to Veda. And then I'm Veda. She's Robin. So I. I don't look like I'm 13, but okay. I said, veda, just go with it. She goes, mimi is nuts. I was like, well, a little.

[Robin]

But that's, I think, the saddest parts of Alzheimer's. When someone with Alzheimer's finally passes, a lot of times for the remaining family members, it's relief, a feeling of relief because you have lost that person a long time ago. It's been years of progress where they mix up your name at first, then they don't remember you, then they think you're a stranger. Right. And that's like a years long thing for you. This is happening all within the matter of days.

[Guest]

I mean, well, it was about the. We're like in the second week of this, so we're in about two weeks. I just kept thinking, this is just going so fast. It won't slow down. Nothing's stopping it. And I just couldn't believe it. I was awestruck. I was in shock. And I mean, I have a very, very good support system outside of my mother, especially with her friends. I had my dad, and I just couldn't believe it. I was completely shocked and taken back. We all were. And this whole time, I'm going through a divorce. My fiance is actually my boyfriend at that time in my life. So I'm going through a crazy divorce.

[Medical Expert]

So this was not an easy time. We were going through it, and we still don't know for sure what is going on. Because there is no way to really test it. So I think she has this super rare thing, and it's gonna kill her. But I don't know for certain.

[Guest]

I mean, this whole time we're going through all of this, I'm researching, like, madly researching, and I stumble upon HGH shots prior to 1996 were derived from cadaver pituitary glands. And some people receive those shots also contracted prion disease, because you can get it from brain tissue. Now, this is very important because when she delivered me, she had Sheehan syndrome, which is ultra rare. Sheehan syndrome is when a woman who is in labor hemorrhages profusely during or directly after labor. And she had to have eight units of blood transfused after my delivery, which was an emergency C section.

[Erin]

Oh, my gosh. It's in the blood, isn't it?

[Robin]

But the Shen syndrome is related to the pituitary gland.

[Guest]

Yep.

[Robin]

Correct. Yes.

[Guest]

Yep. But the blood she got think 1981. Did they screen blood? And how well did they screen it? That is a risk factor.

[Medical Expert]

So she got the blood transfusion, and then afterwards, she had to start doing the HGH shots for her pituitary gland. And both of those things, the transfusion and the HGH shots, were risk factors for prion disease at the time. And those weren't her only risk factors.

[Guest]

You can get it if you were in ORS and they were doing surgery on the brain. She was an OR nurse. She received the shot in 1989, and she received eight units of blood in 1981 that were not regular, regularly screened. So she had three risk factors. And I just knew in my heart of hearts that this is what it was. But there was still. There was one symptom that I was missing, and I wanted that one to happen, to give me the okay. This is what this. I. I'm a hundred percent. I was 99%. I want that 100%. I also kind of wanted a doctor to sit there and give me that reassurance and tell me, yeah, I think you're on the right place.

[Medical Expert]

But I wasn't getting that. At this point, we are still in and out of the hospital trying to figure out what was going on. And she just kept declining and declining. And now they're treating her like she has rapid dementia.

[Guest]

They put her in a neuro unit. They go from the main floor to the hospital. They put her over to neuro because they're like, something's hinky going on here. And they had her on Alzheimer meds. And I said, No, I want to talk to that doctor because I want her off those Alzheimer's meds. So I had a conversation with the neurologist, and I said, listen, I had those hard conversations. And I told him basically same thing I told you guys. And he goes, well, that was a well educated, informed decision that she made, and I will go ahead and take her off all those meds. So thank you very much. I just want to respect her wishes. This whole part was about respecting her wishes and what she wanted the whole time. And I said, but I noticed the other day, for like a short moment, it's almost like she was acting like she was drunk. And he goes, what? I said, yeah, she's kind of acting like she was drunk, but just like, for five minutes. And then it went away. That's really odd, don't you think? And he goes, yeah. I said, do you think you can investigate that further? He goes, honestly, this is above my scope. You really need to get into a more specialized neurologist. And I see you have this appointment set up.

[Medical Expert]

But that was the appointment that was months away. And I knew if she had to wait for that appointment, she was not going to make it.

[Guest]

And I'm sitting here thinking. I'm like, I get it. You don't know the answer. It's above your pay grade. Phone a friend. She's in the hospital. Like, they will come. I was so infuriated with the starter. I was like, okay, great, thanks. Bye. Click. That was the symptoms. When she started acting a little drunk, I was like, okay, but it's not consistent. And I know there's gonna have to be a time period where it needs to be more consistent. I mean, I. I mean, every day I'm reading as much as I can on cjd. I'm just taking it all in, waiting for these medical records to come to me to get to them. And I'm like, it's not going to happen. They discharged her. And my mom's friends all. Can I say convince? They told me I should really put her in rehab. They can. We'll get a rehabbed better. And I said, okay, great. They were holding on to hope, and they needed that, and I understand that. And I put her in a rehab that was close to me. It was literally down the road from my house so that I could be there. And it was a nurse. It's a nursing home. And my mom always told me, don't you dare put me in a nursing home unless I'm coming out. I said, okay, I'll make Sure. You come out. She got there on a weekend, and they kept her for a week. And I told them when I had my meeting like that, Monday or Tuesday, I said, she's not going to get better. It's going to get worse. I think this is cjd. I want her out before Mother's Day. And they said, okay. Do you have care set up? And I said, I do. I'm going to contact Marianne with until the end. End of life Care, Concierge services. It's a long name, but she's amazing. And I have it all set up. And I arranged everything during that week. I get divorced.

[Erin]

Girl, you were going through too much.

[Guest]

May 8th, I got divorced. So. And I told my attorney, I said, when we leave here, I better be divorced, because my mom, at this point, she's going to die. You have got to get me divorced, because I don't want my ex trying to get anything that once belonged to my mother. And he said, done. So I left. Divorced. She literally called me while I was there, screaming on the phone. And they couldn't get her to take her meds. And when she was there at the nursing home, they wanted her to do physical therapy and speech therapy and all these things. And they. I walked in one day, and they pulled me aside, and they said, does your mom always act like this? I said, no. Three weeks ago, she was baseline. They go, what? And they're like, you know, she's a little drunk acting. I was like, yes, we are consistent. I was like, yes, I felt great because we are consistently drunk. Now, that is the box that I wanted checked.

[Erin]

Taking that line out of context.

[Guest]

Oh, When I say she was drunk, like, it was crazy. I walked in, she was like, robin, let's get the hell out of here and go buy a boat. I was like, okay, let's go. Can you walk out of here? No. She goes, put me in a wheelchair. Let's go. One day I walked in, and Thelma.

[Robin]

And Louise in the nursing home.

[Guest]

Yeah. One day I walked in, she was like, can you believe we're in Florida? And they don't even have a plate of fresh fruit? Mom, I'm so glad you thought you were in Florida. Let me go get your fruit. I'll be right back.

[Erin]

Where were you guys actually?

[Guest]

Southern Indiana. Far from Florida.

[Erin]

It's not even a. No, it was great.

[Guest]

I did, like, the drunk time. I thought that was absolutely hilarious. It was so funny because my mom and I would go out drinking and have fun, so it was good to see that part of My mom one last time and be able to see her laugh and smile and cut up and just say stupid stuff that is just, like, hilarious. It was just kind of. Honestly, it was a shining light in this storm. So I get her out of the.

[Medical Expert]

Nursing home just in time for Mother's Day, like I promised her.

[Guest]

I get her into the car. It's like, okay, she can take a step down. We can get into the car, get out. My boyfriend at the time, fiance, whatever, Eric, meets me at the house, and we try to get her out of the car. It took us an hour to get her out of the car and into her bed because she couldn't move her body. She couldn't figure out how to do steps. I had to grab her pant like she was in, like, pajama pants, and I had to wrap it around my hand as tight as I could and pick her leg up. And the only thing that got her to move was my daughter. Veda came over, and I said, look, mom, there's Veda. Go get Veda like you would do for a baby. And she said, come on, Mimi.

[Erin]

You can do it.

[Guest]

And she was cheering her on, and it got her to move, and it got her to go that I. So I could get her up. We could get her up farther. There was three steps, and she couldn't do three steps. And it was really hard that day. That was a hard day.

[Robin]

Because, in essence, she's. She's on hospice now.

[Guest]

Well, when Marianne got there, she looked at her and she said, you brought her home like this? And I said, yes, ma' am. She goes, why has not hospice already evaluated her? She goes, honey, we. We have to make some phone calls right now. We have got to make some phone calls. We are going to take. I'm going to take care of your mama. I said, okay, yes, ma' am. She was my saving grace. She goes, oh, no, honey, we need more help. You've got to call hospice. We're calling hospice. So I called them in, and she was home. So it was like everything was familiar. So it's like it snap. I had my mom back. She all came back to me. She knew who I was. She knew everything was going on. The hospice nurse came into her and said, hi, my name is so and so. I'm from hospice. Do you know what we do? And she goes, oh, yes, I know. I was like, that's my mom. I haven't seen glimpses but, like, maybe two minutes of my mom here and there in the last two weeks, and she's Here. And with hospice, they give you a rating, and every day the rating can change. So basically, what is your life expectancy? How much longer do you have to live? So they do their assessment, and they put her at 30%. You have. Your body's functioning kind of not at 30%, but you have 30% of functions that you're. She's not able to walk. She's not able to feed herself. She's not really holding down food. So I got her set up with hospice. They were amazing. They got a bed, they got a wheelchair, they got her meds. And before we moved her, and it took me, Marianne, my friend Janae, and one of Marianne's nurses or caregivers, because these are sitters. They're not nurses to move my mom. But Marianne's like, well, we. Honey, we need to give her meds. And I know when you start the medication with hospice, that that's the beginning of the end. But I wanted my mom to know that I gave her her the meds and I got her out of pain because she was hurting, and I wanted her to know. So I climbed up on that bed and I said, mama, I got your meds. I got your pain meds. Are you ready? And she goes, yes. And she, like, stuck her face up like a little bird, going like that. And I gave her her meds, and we moved her. It took four of us, and she wasn't a big woman. It's. But at this point, she's dead weight. So 150 pounds of dead weight is like 300 pounds of dead weight. Like, it's hard to move her because she can't help with it at all. So we get her up. You know, I had to get sheets, and I bought the prettiest sheets I could find because she loved flowers. So I made sure there were flowers on there. And I put her in the bed, and I got her comfortable. And Marianne said, okay, I'm gonna get this. She's gonna be here. I'll be back in the morning. We're getting everything set up. Hospice is coming back. We're gonna do another assessment because your mom's going fast. Hospice came back the second day, and that was Mother's Day.

[Robin]

And.

[Guest]

She wasn't really coherent, but the only thing that she could do was she would kick me.

[Erin]

Going out style, man.

[Guest]

And I'm like, all right, Mom. But I had the best Mother's Day with my mom, and I made her my meatloaf because mine was always better than hers. And she had been with that. I Made mashed potatoes, corn, cornbread. I cooked it up, I threw down in that kitchen, and I made her kitchen a holy mess. But I cleaned everything up afterwards. And because if I didn't, she'd be mad at me. And I fed everybody. I had people stopping in. I told people to come. I said, please come. Please see my mom. Please spend time with her. And had the best Mother's Day. And my daughters and my son and all the kids went out on her screen and porch and cleaned it all off and got it all set up for her, because Mimi loved to sit out on her porch. And when hospice came in, they said. She said 20%. She went down 10% in one day, not even 24 hours. And it was 27 days from the onset of symptoms that I noticed to her death. And I couldn't. I couldn't keep up. I couldn't keep up with her. She was going so fast. To be baseline, it's one thing if you have a stroke and you. It's a massive one, and you don't get care, and so it's like doom. But to see someone just decline, decline, decline, decline, decline in 27 days. I couldn't catch my breath. And I remember that when the funeral home came in after she died, I looked at her and they said, we'll give you a moment. I said, okay. And I looked at her and I rub my hand on her head and I kissed her forehead. And I said, mom, don't you worry. I will find out if it is the last thing that I do, what happened to you. And that was my last thing that I said to my mom. That was my last promise. So I immediately got on the phone with the Priyan foundation and called them and told them, and they said, well, we're going to call over and tell this to the Prion Institute. And I said, okay, great. The Prion Institute is the national institution in Columbus, Ohio, that studies prion disease around the world.

[Medical Expert]

And they would test my mom's brain to see if this is what she died of. So the plan was to get her the autopsy and then send it off to them to get tested once they agreed to do so.

[Guest]

And they gave me their number and said, give them a couple of hours and then they'll. Maybe they'll call you. And I said, okay. I called them an hour later because I was arranging things. Yes. And so I called them, and the lady on the phone was like, yeah, I just got that. And I sent an email over to. To the autopsy coordinator, and I said, okay, great. Well, I need somebody to listen to me. And I had a very condensed version of this story. And I had signs and symptoms. I had onset date, this symptom, onset date, this symptom. And I went down it. And she goes, hold on, I'm gonna send an email right now again to follow up with the email that I just sent five minutes ago. Because this really needs. Just. Just give me a minute. Like, the lady was gasping for air while I was telling her this, and I'm like, yes, they're listening. Because I've had a lot of people keep telling me, this is so rare. This is. This can't be it. And, like, I've had a couple people like, okay, but what's the differential diagnosis? And I'm like, alzheimer's, dementia, vertigo. I've never really heard of vertigo that has killed anybody before. And so I call the funeral home. I'm getting that set up. And I said, no, I want an autopsy. And they said it was going to cost me X amount of dollars. And I was like, oh, that's expensive. And my dad said, I'll pay for it. And he go, I'm talking to this guy. And funeral. He's a mortician.

[Robin]

That.

[Erin]

That didn't. They didn't talk to each other.

[Guest]

Nope.

[Erin]

But. But he's still. That's. That's very kind of him.

[Guest]

Yeah, yeah. They were like oil and water.

[Robin]

Because he did it for you.

[Guest]

Yeah, yeah, yeah, that's my dad. But I get a phone call from the Prion Institute with the autopsy coordinator, and she said, we would love to do a brain autopsy. After I did those signs and symptoms, she asked me a couple of questions, which were, has she ever had a blood transfusion prior to a certain year? Has she ever received HGH shots prior to 1996? Yes. As she consumed venison, like deer meat or squirrel meat, anytime in her lifetime. Yeah. Her dad was like. He was a good old country boy. They all went hunting all the time. So she said, I need you to fill out some paperwork. And I said, well, I was talked to this mortician, and he's willing to send off samples of whatever you need. And she goes, oh, he is? That's great. And she said it kind of, in a way, and I was like, huh? And I didn't understand why she was saying it that way, but I now know. She's like, this guy doesn't know what this is and has no idea what he's dealing with. With. My dad had already sent the check in for my mom's autopsy. And I get a phone call the next day from this guy, and he says, I will not touch your mother. I have done research. This is highly contagious. If I open her brain, I can become infected with this and it can kill me. And he said, I will not open her brain. I can do a below the neck autopsy, and that's it. And the Prion Institute said they would only do above the neck. And I called her physician and I said to her, if you could only autopsy one part of my mom, the brain or the full body. Pick one. She says, I don't want to give you that opinion, but, Robin, I have never seen someone fight so hard and argue and push. You've literally pushed. Pushed all. I've read all the records, I've read all the nurse notes. You have pushed every button on every single position she's encountered, and you have made them mad. And I've never seen anybody fight so hard for your mom. But I will tell you one thing. When you said this, could this be cjd? I reached out to this physician in our practice, and he's like this mad scientist doctor. And I gave him the rundown, and she goes, her daughter thinks it's cjd. And he sat back and he goes, huh, it fits. But this is just it. If it's cjd, she's going to be gone in no time. Did that give you your answer? I said, I'm doing the ovarian autopsy, and that's the only thing I can get. And she can't have an open casket. She has to be cremated immediately afterwards. And she didn't want to be cremated. She wanted to be buried. But she's a nurse, and she would want her brain studied for the rest of time like it is going to be. So I got back on the phone with them, I called them, and this was in like a 12 hour span. And I had arranged for the Prion Institute to fly in their forensic pathologist from Seattle, Washington, to then to Columbus, Ohio, to then drive the mobile morgue down to southern Indiana and do her autopsy in their mobile morgue. I remember asking her, you're gonna fly somebody in to you to then drive a mobile morgue here to do this autopsy on my mom. Do you do that for everyone? And she said, in certain situations, we do. Oh, okay, okay. And the funeral director was like, I have never seen stuff happen this fast before in my entire life. I can't believe you got this done. And this is crazy. Their mortician did not want to even Touch. My mom put her in the freezer and was like, I'm not having anything to do with that. She was like, he called me freaking out. They told me originally that they were gonna do it, that it's no big deal. Oh, yeah. We do these things all the time. Yeah. You don't open the brain, do you?

[Robin]

I don't know a lot of the process of autopsies, but from my understanding, only medical examiners are allowed to do autopsies. I'm not familiar with morticians even playing any type of role. The reason why you get an autopsy is because there is a medical question as to why this person has died. It can be for a legal. Like, a medical legal question if there is unanswered questions as to whether some. For, like, public health reasons, that can be done almost, like, against your will. So in. In this case, I imagine that the. The me, the medical examiner probably themselves don't even have that much experience with prion disease and would need that specialty team. But again, because it's one of those things, you need the answer first to know before what you're getting into.

[Guest]

There's no test, correct? Well, there is a test. There is a spinal tap. But my mom was too far gone to get the spinal tap. Once they did the autopsy, it took 12 weeks to get the results back. They initially said six to eight weeks. And while I was waiting for the results to come in, I was calling the Prion Institute every, like, couple of weeks. But when it got to, like, 11 weeks, I was like, I'm gonna start calling every week. Cause I wanna know.

[Erin]

I was surprised you weren't calling every day just based on your tenacity.

[Guest]

At first I did, and she said, honey, this is gonna take some time. They have to really look.

[Medical Expert]

And finally, after 12 weeks, I got the results, and it came back positive. She did have cjd, and that is what killed her.

[Guest]

And I literally. I cried when I got. I got the paperwork. I walked out of the doctor's office, stepped on the elevator, and I was in there by myself. And I just started crying because it was tears of joy and tears of sadness. It literally closed a chapter for me and gave me so, so much closure just to know that this is what took her. It's not the easiest thing to go through, especially when you have so many questions that are unanswered and you just want to know why, and nobody can figure it out. And I feel like having those results. I kept them. I kept the paperwork. I have it in a filing cabinet. I won't ever get rid of it because, I don't know, it's just something that I have to keep. But it wasn't from her shot. It wasn't from the blood. It was sporadic Crotchfield Jacobs disease. It just spontaneously happened, and we don't know why. And it is not genetic, because on the off chances that it was genetic, I wanted to get myself and my kids tested, and that's why I wanted to know.

[Erin]

Absolutely. Of course.

[Guest]

Yeah. So there is no cure with sporadic Crottsville Jacobs. There is no cure, there's no treatment, and you will be dead within months.

[Robin]

So I think this is the right time for me to interject and give everyone a little bit of the medical background in Dr. Nance's Med School 101. When we talk about prions as a category of disease, you can think of, you have infections, you have bacteria, you have viruses, and then you have this separate category called prions. And imagine your body is like a factory that is making sweaters, but it's using a perfect knitting pattern, and that knitting pattern is your proteins. Now, most infections, like a bacteria or a virus, they're like thieves that break into the factory, and they start wrecking the equipment, and they're stealing sweaters. But they're clearly not factory workers, Right? We can recognize them as these are like, thieves and robbers, and they can be identified and they can be fought off. But prion disease is different because it's actually one of your own workers who starts building the sweater wrong. And it's not just one mistake. They start making this, like, twisted sweater that convinces all the other workers to make the wrong sweater, and then all of those wrong sweaters overwhelm the factory, and then the factory shuts down. So in the end, it's one of your own. It's your own body's protein that starts misfolding itself. And then that misfolding accumulates over a period of time. And unfortunately, for whatever reason, it acts fast. And it does not take a long time before the body shuts down.

[Guest]

The forensic pathologist with the Prion Institute had told the funeral director, he said, oh, I'm very familiar with this. I can go in, take the brain. You know, one half gets frozen and one half gets set in the solution. And usually when I do that kind of look at it, and it kind of looks like it's got holes all through it, like it's been eaten. It almost looks like a miniature Swiss cheese. It just eats your brain. For a lack of better terms, is.

[Erin]

This considered an autoimmune condition because it's your body attacking itself.

[Robin]

It's not really attacking itself. It is changing the normal architecture into faulty architecture. So another way to think of it is like if you have like a folded crane, right. Like those origami cranes, and you stack a bunch of origami cranes on one another, but all of a sudden someone starts folding the crane a different way and so it forms like a kink. Then it forms another misshapen crane and another misshapen crane. So now the channel chain is just a defective deformed chain.

[Erin]

Yeah. And it doesn't fit together anymore. Yeah.

[Guest]

Correct.

[Robin]

So it kind of replaces those normal, healthy chains of cells into damaged cells. But again, it's an. It's like an inside. It's like a corrupt inside job. The sporadic type, the mad cow disease, which is eating that you would get the prion disease from. From diseased cow is a different version.

[Guest]

And that's why the medical records was. Were important because they can't differentiate if. If someone received material, genetic material like blood or her shot, if that person had genetic. And it was in her from that. Now it can live dormant in your system for up to 50 years. Yeah.

[Erin]

And there's nothing you can do even if it's in you dormant.

[Guest]

No. There's no treatment. No, there's no treatment. There's no cure. There's nothing. You're dead.

[Medical Expert]

But there are people researching it at the Prion Institute. So we donated her brain to them for research.

[Guest]

So hopefully they can use that to study the disease further and to study the disease process and find more information. And my mom, being a nurse, she would 110% want that. She was always about the medical field, always about research, always about finding new things. And if her body part could make a difference, that would just make her day.

[Erin]

Wait, so are there people. I'm just genuinely curious, are there people alive today who know they have this in their system dormant and are just awaiting it coming to life?

[Guest]

I don't know. I know that there are people that are genetically born with it and they know that they have this and they are waiting. There's a whole group that I found and unfortunately they have the variant that a genetic mutation that will cause them to. To lose their life because of this. That's why I wanted to get my mother tested. That's why. Because I needed to make provisions for myself and I needed to make provisions for my children if this was genetic. Being that it's not, it's sporadic means it just occurred. It's not genetic. That's why they needed the medical records. So on the off chance that they could track stuff down, if it came back as genetic, then they would try to track it down further to see if it was genetic from her or if it was genetic from someone else, and then test me. Kids, possibly, so on and so forth. I think out of all of this, I'm grateful that it's not true genetic, because I would hate for my kids to have to go through what I went through with me. I mean, there's five of them that are mine, so at least there. There's a lot of them. But I'm an only kid, so it was rough. It was really rough. But there were a couple of naysayers out there. So I was. I dug deep into my pedi bag and posted the results on my mom's Facebook page.

[Erin]

You know what? You know what? I love that.

[Guest]

I absolutely love that. Well, because I had that Aunt Pam, and when I told her that I was bringing my mom home because my mom said, I worked in a hospital for 40 years of my life. I'll be damned if I die in one. And I said, okay, fair enough. I'll bring you home. And she had said this her whole life. So when I brought her home, I told Aunt Pam and she said, I can't believe you're giving. Basically, I can't believe you're giving up your mom and you're going to regret this one day. And I said, no, I'm not, because I'm doing exactly what she wished for. She wanted to die at home. I got her home. She's peaceful, she's calm, she's relaxed. She's around her loved ones.

[Erin]

That is one thing I will say that I've lost all my grandparents and my mother and my sister. So put a lot of death in my life. I lost my sister to kind of a similarly unexpected loss. And one thing it has taught me is to prepare so that the people who love me aren't burdened with that when I pass. And I think that's a really hard, difficult thing to think about or even talk about. But I think it's. If you want to give a gift to someone past your passing, that is a great gift to give, is just having that all ready to go, which is. Which is a weird thing to talk about, but I think we shouldn't be afraid of.

[Guest]

You have to have those hard conversations. You have to talk to your loved ones. You got to know what their wishes are. You've got to put it in writing. Get it notarized. If it's not notarized, it's not legal, you know?

[Erin]

Yeah. I mean, and, and honestly, because of all the loss we've had in my life, my dad's funeral is totally and completely planned, which I think is not.

[Guest]

So is my dad's.

[Erin]

Yeah.

[Guest]

For another reason. Because my family has all the rare diseases.

[Erin]

Yeah. But. But it makes everything a lot simpler because everything's picked out.

[Guest]

Yep.

[Erin]

You just go, everything's done. Everything's done. And, and it's not a burden on anyone.

[Guest]

Yeah.

[Robin]

I, I, I still can't get over the Facebook flex of posting the prion results.

[Guest]

I was like. And I was right. And you know what? I have no regrets. None at all. I did everything that I could do in my power to make her as comfortable. I, as much as she would have hated to be in a nursing home, and I know this for a fact, I almost needed that break. Like, I couldn't keep running back and forth 30 minutes each way to the hospital. Hospital every day, sometimes multiple times a day.

[Robin]

I think it's a nurse thing. Also. Like, my mom would strangle me if, if I put her in the nursing home. I think that's, that's 100% a nurse.

[Guest]

Please don't haunt me.

[Erin]

Yes.

[Guest]

But I just needed a break. I got you out before Mother's Day.

[Robin]

Yes.

[Erin]

I would also say, though, too, like, it's really easy to say I would never want this. When you're in perfect health. Health. And you, you're looking at that situation in terms of a person in perfect health. Right. Like, Right. Like at some point, you're just not capable of providing the care that that person needs.

[Guest]

Right. And I just, I didn't know what else to do. But, you know, I wanted to do this in her memory because she would want people to know. And on the off chances that you had a person die of something like this, then you know that this is possibly what it was.

[Erin]

And.

[Guest]

You know how to advocate. Like, people can learn to advocate for their family. People can learn to fight for them when they don't have the voice to fight for themselves.

[Erin]

I would say, regardless of whether someone has this condition or not, I think you've raised a lot of things that anyone with a parent should be thinking about, such as, how do you have those tough conversations about what they want as their health declines? Because you should know. You should know. And how can you advocate for someone when you don't know what they want? Which I think is a really hard thing. I think talking about End of life care is a really important, important thing that a lot of people are afraid to discuss. And I'm. I'm really thankful that, you know, a, you told your story, but, B, you're bringing to light conversations that will only improve people's lives if they have them. Right. Yeah. And also improve the moments they have with people towards the end of their life. You maintain this beautiful sense of humor with your mother, and even now when you tell the story back, there's still this, like, jump between sadness and joy because that was who your mother was for you. And I think that you did a wonderful job of honoring that part of her in telling of the story, but then also in the way you treated her in the final days. And that's something that I take from the story is just like, I need to have those conversations with my dad.

[Guest]

Yeah.

[Erin]

And they are not fun or easy conversations to have, but I need to have that.

[Guest]

So.

[Erin]

Yeah. It's important for that point as well.

[Guest]

Yeah, it is.

[Robin]

Robyn, thank you so much for sharing your story and your mom's story. You certainly honored her with the education that you have just provided so many people and just the comfort in knowing that I'm sure there are many other people who. They may never find the reason. Right. They don't have that finality. They don't get that autopsy. And everyone's experience is different. I think the fact that you were able to have that finality is a blessing in itself. And I hope something that really helped heal you and brought you the closure.

[Guest]

It did. It did.

[Erin]

So, Erin, I have a question for you. After this episode, is there really nothing you can do for this? Because it always feels like there's something at least to, like, delay or alleviate or make something manageable. But the way you guys were talking, it didn't seem like there was anything.

[Robin]

You could do in this case. It's shocking, but. That's right. There is no actual treatment. There's only what we call supportive measures. So that means like, keeping someone hydrated, keeping their pain under control, kind of what was going on towards the end of her life when they brought in the hospice nurse. But, yeah, this is a disease that we are totally stumped as a medical field. I think part of the problem is that because it is fairly rare or at least rarely diagnosed and how quickly it happens, we don't really have the time to set up a control group and do research, and.

[Guest]

Right.

[Robin]

That's how we perform research studies. So I think the nature of the disease itself makes it really difficult to Perform research. And yeah, I mean this is one of those diseases that you're like, holy.

[Erin]

Crap, it's just the end.

[Robin]

And that's, that's why the fact that number one, I think everyone can take away from this show and many of the shows the power of Googling. And people get a lot of, a lot of grief when they go to their doctor and they say, well, I googled it, right? But in this case, her son in law was the one to actually come up with the diagnosis after just straight up Googling. And I think part of that is the physicians. When we're in it, we want to really draw on, I think our experience as the most important part to solving these cases and the problems. I think we have to understand that the Internet and ChatGPT and technological tools are our friend. And not only are our friend, but they should be the new standard.

[Erin]

And I know that's scary for a lot of people because people are scared about technology, but even more so of AI. And my whole thought on this is like the only person who's able to think about your condition 100% of the time is you. So when you're the doctor, you have, you've said this multiple times, you have a certain fixed amount of window that they have to focus on your condition. Maybe you get lucky and you find a doctor who's willing to invest more time. And it doesn't necessarily make them a bad doctor if they aren't. It's just managing a caseload.

[Guest]

Right.

[Erin]

You are one of many people they have to care for. So you have the time to do the research, you have the time to do those things. And I think that maybe we should discuss this on future episodes. But like, how do you do that in a way that is supportive of your medical team versus argumentative with? Because I think there is a finesse to having those conversations that, you know, you surface with your doctor in a way that you're taking serious.

[Guest]

Absolutely.

[Robin]

I mean, I saw this, you know, meme on TikTok that, you know, the doctor says don't confuse your Google search with my four years of medical school or something. And the retort was, you know, don't confuse your one hour lecture on my rare disease with my 20 years of living with that disease. And I can see both sides of the issue. And I think we need more people to understand from that both sided position.

[Erin]

Yes. And I think that, you know, maybe we should do a special episode, I'm throwing this out there without talking to our producer, where we literally just talk about how to do that, how to research, and then also have that conversation with your doctor. I know it wouldn't necessarily be a story, but it could be really helpful to a lot of people. Let us know if you want us to do that. I'm going off script here. Our lovely producer Molly has no clue that I just suggested that, but I think it could be really helpful to hear from both sides what's worked and kind of amalgamation of that. And then the last thing I kind of got from this episode that I don't want to walk away from this, not talk, talking about, because I think it's really important is preparing for the eventual death of your loved ones, which is a really tough thing because people don't want to think about death. But the greatest gift you can give someone is doing the preparation for your own death, which I know sounds morbid as hell. I get it. But when someone is grieving, the last thing you want to put on them is all. All of the additional steps it takes to manage a death. And unfortunately, I've had a lot of death in my family. That's not a great thing to experience, but it is a lot of work to manage a funeral. And you also have that burden of, oh, I want to make sure I get it right for them. Right. Well, if you've never had those conversations about what right is, you also have that guilt of, did I do it right? Did I pick out what they want? Did I think about how they would want to go? And if you don't know, you are giving yourself extra guilt. So have those tough conversations. Talk to your parents about what they want as they age. Because that is a gift not only to yourself, but it's a gift they can give you easily. That honestly will strengthen your relationship.

[Robin]

Definitely. And you know, our guests was a very medically advanced guest. Right. She was herself a medical biller and coder. She understood the language. For those of you who didn't catch what she was saying when she said she got poa, she was talking about having power of attorney. And this is something we should invite my dad, my stepfather, who's a medical lawyer. But people have no idea what a living will entails and what power of attorney means. And these are all, again, preparations that should happen before you ever step foot into the hospital. But it means making the time to have those conversations.

[Erin]

Honestly, that should be another informative episode. We do. How do you prepare for someone that's dying? I know these are, like, not like our standard type of content, but I feel like that's just an episode that I think people would glean so much insight from if we had your dad on, or maybe we had even a nurse practitioner to talk about how to triage in the hospital for nursing.

[Robin]

Like, I was just on Nurse Julie's YouTube live last night and she's known as the hospice nurse on on TikTok, and she's incredible with educating people, you know, end of life things.

[Erin]

So y' all, please drop in the comments if you'd like to see us do a couple informative episodes around, you know, advocating for yourself and how to work with your doctor when researching your own condition. If you want to hear one about hospice care and setting yourself up for a plan after death, whether it's for people you love or even your own plan, I think that these episodes could be really helpful. But I don't want to make them if you guys don't want to listen to them. So let us know and if you do, we'll make them. We'll make them. Why not?

[Robin]

Well, thanks everyone for spending your Wednesday with us. Until next week.

[Erin]

See y' all later.