Katie & Steve's Story Part 1: The Wife Who Wouldn't Give Up

Summary

Podcast Summary: The Medical Detectives – "Katie & Steve's Story Part 1: The Wife Who Wouldn't Give Up"

Introduction

In the August 6, 2025 episode of The Medical Detectives, hosted by Dr. Erin Nance and Anna O’Brien, listeners are introduced to Katie, a devoted wife sharing her husband Steve's perplexing medical journey. This two-part episode delves into the complexities of navigating the healthcare system in search of answers for Steve's mysterious symptoms.

Background of Katie and Steve

Katie and Steve met in the early 1990s while working in the same building in Raleigh, North Carolina. Steve, an environmental biologist, was a pioneer in North Carolina’s water quality program, dedicating 50 years to protecting the state’s waterways. Katie, an HR Specialist, became Steve's true love after a short-lived marriage. Together, they built a life centered around Steve’s career and their close-knit group of friends.

Notable Quote:

Katie [02:37]: "He loved his work. It was just a huge, huge part of him. That's what he did and loved it."

Onset of Symptoms

In early 2023, Steve began experiencing unsettling symptoms, starting with changes in his handwriting. Initially hesitant to share his concerns to avoid worrying Katie, Steve noticed his once illegible handwriting became increasingly difficult to decipher. Soon after, he suffered from severe dizziness and vision problems, unable to see the left side of pages, which significantly impeded his reading and comprehension.

Notable Quote:

Dr. Nance [05:29]: "And did that scare you?"

Katie [05:31]: "Yeah, it was weird. It was weird."

Seeking Medical Help

As Steve's symptoms worsened, including balance issues and slowed speech, Katie and Steve embarked on a rigorous journey through the healthcare system. Initial consultations with a neurologist led to misdiagnoses such as carpal tunnel syndrome and inconclusive assessments of dementia. Despite multiple tests—including blood work, EMG testing, and MRIs—results were often normal or unrelated to Steve's primary concerns.

Notable Quote:

Katie [06:30]: "He had the handwriting of a doctor that you had to learn to read."

Navigating Misdiagnoses

Frustration mounted as Steve encountered various specialists. From an orthopedic doctor diagnosing torn rotator cuffs to ENT specialists dismissing benign neck tumors, each appointment seemed to divert focus without addressing the root cause. Katie meticulously documented every test and appointment, often seeking insights from their daughter, Julie, a physician's assistant, and online caregiver communities.

Notable Quote:

Katie [13:00]: "They do that, right? But, like, we know as women, that was malarkey, you know, it just wasn't right."

Arrival at PSP Diagnosis

After nearly a year of relentless searching, a breakthrough emerged during an appointment with a highly recommended movement specialist neurologist. Comprehensive testing, including a DAT scan, revealed odd findings leading to a probable diagnosis of Progressive Supranuclear Palsy (PSP)—a rare and degenerative neurological disorder. Unlike Parkinson’s, PSP rapidly deteriorates motor functions and vision, leaving little hope for effective treatment.

Notable Quote:

Katie [47:03]: "It's called progressive supranuclear palsy. It's a rare degenerative neurological disorder with no cure."

Challenges in the Medical System

The episode highlights systemic issues within the healthcare system, such as prolonged wait times for specialist appointments, miscommunication between patients and doctors, and the difficulty of obtaining accurate diagnoses for rare conditions. Katie emphasizes the emotional toll of watching her once strong and independent husband succumb to debilitating symptoms without clear answers.

Notable Quote:

Aaron [42:33]: "You shouldn't have to go to your daughter in law who is a physician's assistant to understand your medical records or your husband's medical records."

Conclusion and Teaser for Part 2

As Katie and Steve face the daunting reality of Steve’s PSP diagnosis, the episode concludes with a sense of unresolved tension, promising further revelations and challenges in Part 2. Dr. Nance hints at an unexpected turn in their story, urging listeners to return for the continuation.

Notable Quote:

Dr. Nance [51:47]: "I have never in my life come across a situation that happened here to Katie. So thank you so much for listening, and stay tuned for next week for part two of Katie and Steve's story."

Final Thoughts

"Katie & Steve's Story Part 1: The Wife Who Wouldn't Give Up" serves as a compelling narrative of resilience and the search for medical truth amidst uncertainty. It underscores the importance of perseverance, patient advocacy, and the need for improved communication within the healthcare system.

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Listeners are encouraged to subscribe to The Medical Detectives for the next installment of Katie and Steve's journey, where the complexities of Steve’s condition continue to unfold.

Transcript

[Dr. Nance]

Hey, everyone, it's Dr. Nance. I'm really psyched for this week's episode because we have another person telling their story on behalf of one of their loved ones. This is Katie telling the story on behalf of her husband Steve. And Katie is a die hard Dating Detectives fan. And. And that's how she was initially introduced to the Medical Detectives, which I know there are so many of you who found this podcast because you listened to the Dating Detectives. So this is just a reminder. We would love to hear your stories. Please email them to us@storiesmedical detectives podcast.com and spoiler alert. This is another two parter. Don't hate me.

[Katie]

Don't hate me.

[Dr. Nance]

But the story is just so good, we had to do it justice by putting it into two parts. So without further ado, this is part one of Katie and Steve's story. Hi, Katie. Welcome to the Medical Detectives. Thank you so much for joining us.

[Katie]

Well, thank you both for having me today.

[Dr. Nance]

I'd like to start by letting our audience know that you are telling the story on behalf of your husband. And I'd like for you to take us back to how you and Steve met.

[Katie]

Okay. Well, we met back in. In the early 90s. We worked in the same building in Raleigh, North Carolina, and it was my first job out of college. I had just come out of a short marriage that was unfortunately doomed from the start. But that's okay, because then I eventually met Steve, who is and always will be the true love of my life. I was attracted to him from the first time I met him. I think he was just such a manly man. He had a commanding presence, magnetic personality, a strong, deep voice, and you could tell how respected he was in his field of work. And everybody loved him. He had a long marriage before the two of us met. They married at a young age, like a lot of people back in that time who were in this small, little rural county that we're in now. They attended college together. They both majored in biology, and 12 years later, they had a daughter. And from the beginning, Julie, his daughter, was the light of his life. He adored her, and they were extremely close.

[Dr. Nance]

What was the field that you were both in? You said you were both working in the same building.

[Katie]

Well, he was an environmental biologist. So in the early 70s, he was one of the pioneers in the water quality program for the state of North Carolina. And that's what he did for 50 years, was protect the waters of North Carolina. Rivers, streams, ponds, lakes. That's what he did. And then I was an HR Specialist at the time. That was my first career out of college.

[Aaron]

So we have Steve to really thank for a lot of the beautiful waters in North Carolina. I'm a huge fan of hiking up in Appalachia, and I'm very thankful to Steve for what he's done to help the nature there.

[Katie]

He loved his work. It was just a huge, huge part of him. That's what he did and loved it. And together we had a really, really wonderful life. Our place was always the place to hang out with our group of friends that we made over the years here. So this was the gathering place. Everybody knew if you wanted to hang out, you came here. The back door was always open, and they could go to the beer fridge and grab one and hang out with us on the carport.

[Dr. Nance]

So the party sounds lovely. So when did you realize that something started to be AMISS?

[Katie]

Around early 2023, I think, is when he first started noticing symptoms. And he hid those from me for a while because he didn't want me to worry. He knew I would worry and that I would probably bug him about it, you know, daily. So. So he didn't tell me for a while, but he finally had to tell me one day, and I just knew something was on his mind. And we were sitting at the kitchen counter, and he told me, something's going on. And I'm like, what are you talking about? And he said, well, something's going on with my handwriting, and I think I have aphasia. And I'm like, okay. Well, I couldn't tell anything with his handwriting because his handwriting was always bad. I mean, he. He had the handwriting of a doctor. Sorry, Dr. Nix, but he had the handwriting of a doctor that you had to learn to read. And sometimes he couldn't even read what he had written a few months before, but he said that was one of the first things he had noticed. And then I said, well, show me. And so he would write for me, and he would start with the word. And he was always a really fast writer, but he was being very precise with his handwriting. It was slowed down a lot. And then as his words would go on, or even just a word or two, it became really small and very. You couldn't read it at all. And so that was one of the first things. And then.

[Dr. Nance]

And did that scare you?

[Katie]

Yeah, it was weird. It was weird.

[Aaron]

So I did Google aphasia just because I didn't know what it was. And it's apparently like an Erin. I'm going to get this wrong, because I am not the doctor. But it's. I guess it's like a neurological thing with speaking and writing with words.

[Dr. Nance]

Most of the times when people talk about aphasia is they have difficulty coming up with words. That was, I believe, in. Like, Bruce Willis was first diagnosed with an issue. They. They just. They didn't say dementia. They said he had aphasia. So it's like difficulty coming up with words, speaking the words, pulling them out. That's usually what we talk about when we talk about aphasia.

[Aaron]

So kind of like extreme brain fog. Like, very difficult.

[Dr. Nance]

A little bit. It's almost like you. You know, when you, like, can't think of a word, but instead of that word being kumquat, it's the. Yeah. Oh.

[Aaron]

Oh, well, okay.

[Katie]

I knew that he didn't have aphasia because my mother has frontal temporal lobe dementia. So having gone through all of that and coming to terms with her illness and understanding it, I knew that that's not what he had. But he had been through this whole thing with my mom, too, and he knew something was going on with his words. And so I'm sure he was thinking what was happening with him was what was happening with my mom. So that's why I think he was so scared to tell me at the beginning what was going on. Then it wasn't long after those symptoms came up that he had started having problems with pretty severe dizziness. And like I said, he was always, always on the go. And he wouldn't come in until he was done with his work. But he started to have to take breaks during the day because he felt so dizzy. He'd have to come sit on his chair in the carport or even come in the house and sit in his recliner and rest because it was just too overwhelming and he had to sit down. And then vision problems happened. He would explain it. He said, I'll look at a piece of paper or the screen of the computer, and I can't see the left side of the page. I can see the words on the right side, but not the left side. And because he was such a technical reader, it would slow down his comprehension because he was focusing so hard to try to figure out what the words were by the. He was a fast reader, too, but by the time he could focus on the word and figure out what the page was telling him, he'd have to start over again. And so that was becoming frustrating for him with the vision problems.

[Aaron]

So question on the left side of it, was it related to the left eye? Like, if he Closed the left eye. Could he then read out?

[Katie]

No.

[Aaron]

Okay, so it was just like a weird.

[Katie]

Still didn't work. Nothing was helping with the vision. But he had gone to his doctor before telling me, and blood work was normal with the exception of a 1C. They determined he was type 2 diabetic. We started Ozempic to get that down and then we went to our local optometrist. There were some weird findings on that. She called it saccadic. Am I saying that right? Saccadic or eye movements. And there was age related macula and bilateral cataract. But all she could say at the time was it was age changes. And hopefully a new prescription could help. And we thought, okay, well that's why you're dizzy, cause you're having these changes in your vision and maybe because you're type 2 diabetes. Maybe something's messing that up.

[Aaron]

Yeah, I know that you can have some issues with vision, I think, from diabetes.

[Dr. Nance]

Yeah. Diabetes affects the smallest blood vessels in your body. That's why you get partially the neuropathy in your fingertips and it affects you gets called diabetic retinopathy. So the blood vessels to the retina are affected. So yes, diabetes can certainly cause issues with your vision and other issues with your fingers if you're thinking about his writing or stuff like that. So you have a positive lab finding which is elevated A1C, which led to a diabetes type 2 diagnosis. And then there are other vision changes, you know, I mean, cataracts certainly are something that is age related. And it's, I would say, typical for people who are aging. Did he improve after any of these interventions?

[Katie]

No, the new prescription didn't help. The dizziness continued, the vision continued to decline. No improvement with the handwriting, nothing. So since things weren't getting any better, we started with our first neurologist visit. And I wanted him to see my neurologist, who, she's just an excellent, excellent physician. And we couldn't get in to see her for a long time. So I thought, well, somebody in her practice will be equally as good. Well, no, this one just. He'd just talk about himself and just. Just really off the wall things. But our meeting with him turned out to be a diagnosis of carpal tunnel. And work stress is what he said. And work stress. I was like, you don't even know my husband really, because you're not even really talking, asking him the right questions. Work is his life. He doesn't stress about it. But carpal tunnel. I thought, well, we could have something going on there because of all the sports he had been in, all the typing he had done over the years, and the mowing that we do here where we live, we have a property that's at the dead end of a little half mile road, and we mow the whole thing. So we mow at least 40 acres. So he was on that mower every day? Every day, just about year round, he was on that. So I thought, well, that could be, you know, vibrations from the mower, so maybe that's part of what's going on. So we did EMG testing. It did show some damage. But then he also wanted him to consult with a memory care specialist there. So he went to that memory care specialist for an evaluation, and when he came back, he said, well, that was a waste of time. He said that the directions weren't given to him properly, and he misunderstood something, and instead of writing some answers, he typed some answers. So when we went for the results, the doctor was like, well, these results show that you are in full blown dementia right now. And I'm like, no, he's not. And. And he said, yes, I can tell by just sitting here talking to you all that your husband does not have that. And the tests were inconclusive. And he gave us the option of redoing the test if we wanted to. And I'm like, no, he doesn't have that. We don't have a memory care issue. Because, again, with what my mom had gone through, I knew that wasn't it.

[Aaron]

I will say the one thing that's kind of. I don't want to say relieving, because it's never relieving to hear someone got this diagnosis. But it's nice to hear that men also get told it's just stress, right? Because we hear the women on our podcast are always like. And they told me it was anxiety or they told me it was a mental health issue. And I'm like, well, guess what?

[Katie]

They do that, right? But, like, we know as women, that was malarkey, you know, it just wasn't right.

[Aaron]

Yeah, yeah.

[Katie]

You know, but Steve, he still wasn't right. We were just still basically clueless as to what was happening. And some the speech issues were getting a little worse, a little slower with his speech. The really good thing about Steve's speech that kept him going for as long as he did was that he was so loud with his speech. He had this. He had a voice for radio. You know, he would have been a great person on your podcast because his voice was wonderful.

[Aaron]

Well, we love it. We love It, Katie. And I'll say, it's nice to hear that Steve. Steve was a fellow loud person. As a loud person, it's nice to hear a loud person referred to so affectionately. Because I grew up with people just telling me to shut up.

[Katie]

Sometimes I would have to tell them in public places. I'm like, honey, you're too loud. Tone it down a little bit. But no, that's just him.

[Dr. Nance]

So he's had vision issues and speech issues, but he has not had any examination of his brain.

[Katie]

Not at that first neurologist, no. So we went to the second neurologist, who had been recommended by a friend. And this guy, he listened to us. He was very patient. He just sat there and just really intently listened. And he did some more EMG testing. He ordered an mri, he ordered more blood work. He wanted to rule out various autoimmune disorders. And that was the first time we were introduced to. And you might know the true term of what they do with this Dr. Nance, but it's the. Where they want him to take his hands and do, like this, back and forth and back and forth.

[Aaron]

Wait, can you show me that in the camera, Aaron?

[Katie]

Like what?

[Dr. Nance]

These tests, they're testing for coordination.

[Aaron]

You put your hands out and you flip them over.

[Katie]

That's.

[Dr. Nance]

That's. It's called dystiatococcinesia. And this is a test of coordination.

[Katie]

So that was really weird to me that that was a medical assessment. And the toe tapping and then stomping the foot and tapping your toes tapping like your big toe. Tap, tap, tap, tap, tap.

[Dr. Nance]

Yeah, these are all coordination tests, which is not just the brain, but also the brain stem.

[Katie]

And even on that first time we had that assessment, the left hand would do just fine. The right hand, he had no coordination in the right hand at all. It was just the damnedest thing. I couldn't understand why he couldn't do that. And the left foot did exactly what the doctor wanted him to, but the right foot was delayed. Not that much at this point, but it was delayed. And then they do a lot of looking in the eyes and follow my finger and look up, look down, look left, look right. To me, an untrained eye, I couldn't see any problem, but they could see something was going on.

[Dr. Nance]

Yeah. So, you know, part of your body's ability to stay balanced, you have the brain, the brain stem and the cerebellum. Those are three separate parts of the brain, and they all contribute parts to balance and coordination. But the neurologist, he's trying to parse out what part of that master functioning is off. And that's why he's doing all these little tests. They all have a meaning in the end, right?

[Katie]

Well, we went back to this same neurologist a few times. One of the blood tests that he ran was for heavy metals. And given Steve's early life on this farm that was once a chicken farm and a tobacco farm, and his work with the water quality being in the laboratory a lot around chemicals, I thought, okay, maybe, you know, because when he was little and worked on the farm here, they sprayed stuff. So I thought, okay, that. That could explain it. You. You get all these tests done, and it takes forever to come back. Every single one came back normal because we would think, okay, we're onto something. So the next one was B12. And then my sister, who's an occupational therapist, she had patients who had deficiencies in B12 that were wheelchair bound when she first would visit them. Then they started the treatments, and by the end of her therapy, before she discharged them, they were back to normal, perfectly healthy, back to normal life. And I thought, okay, let's try this. The test came back, the results were in the low normal. But the doctor wasn't comfortable, neurologically speaking. He said, that's still just not right, so let's try injections. So we started weekly injections of B12. At first, it seemed like the dizziness was under control, a little bit better, but nothing much else was improving. And then his levels, after further testing, they came back up, but still no improvement on the signs. This doctor looked at his handwriting, and he said, well, that's weird, but this is not Parkinson's. He said, we can rule that out. But even though this doctor didn't think it was Parkinson's, he still said, well, I'm going to give you a medication to try. And he said, I'm going to prescribe you Carpodova, Levodopa. And I'm like, huh? I'm like, that's a lot of vowels. And it took me forever to learn how to say that. But anyway, we started taking that, thinking that could help maybe some with the dizziness. And at this time, he was also starting to have some balance issues, but again, still no guess as to what the condition was. And then after a while, that doctor was like, I don't know anything more to help. I don't know any more tests that I can do. And I think this was all going on at the same time because I was trying to rule out anything. We saw two cardiologists Thinking something might be wrong. One said nothing was abnormal. The other one ordered a heart monitor to be worn and found that he was experiencing some PVCs, but ruled out any other major arrhythmias. And then we saw a sleep consultant and he went for the overnight sleep study. And again, he did that to appease me, because if he had come back with apnea, there was no way he was going to wear a CPAP because he was so claustrophobic, he wouldn't have done that. Even though we have multiple friends who say it just does wonders and that they couldn't live without it. But luckily, there was nowhere enough apnea there to explain the ataxia and speech problems that we now knew was called dysarthria.

[Dr. Nance]

So dysarthria is difficulty speaking. So you're trying to speak, but the words are, it's really difficult. It's like a physical. A physical problem. Getting words out. Not a mental problem, but physical problem.

[Katie]

One of the next appointments was to a neuro ophthalmologist, very rare in these parts. So the closest one was a couple hours away. And those findings at the neuro ophthalmologist showed that he was having what they call square wave jerks. And that explained his unstable eye movements. And I had never heard of those, and I still can't tell you exactly what they mean, except. Well, from my understanding, it is like your eyes should go together, you know, moved together succinctly. But his were delayed. They didn't go together, they moved separately.

[Dr. Nance]

Did you witness this? Like, could you watch him and see something was wrong with his eye movements?

[Katie]

There were only a couple times when I through this whole thing where I could see that delay. But every neurologist from that point on could see that. Their trained eye could tell that. And that neuro ophthalmologist said that he was insistent on what he called probable cerebral ataxia, a degenerative condition. And this became the starting point when I got really worried that something was. Was really wrong.

[Dr. Nance]

Ataxia is a balance problem.

[Katie]

So this is.

[Dr. Nance]

Sounds like they're. They're honing in on that as the issue.

[Katie]

Yeah, it was a very confusing time. And all these new medical terms and stuff I spent.

[Dr. Nance]

Overwhelming.

[Katie]

It was very, very overwhelming. Each guest I would get on the Internet and go down rabbit holes. And at the same time, every appointment, we were keeping in touch with, with his daughter. And I don't know if I told you, she's a physician's assistant. And so she was following along with this, even though they're a Couple hours away from us. She wanted to know everything that was going on.

[Aaron]

Was she playing a little bit of like a Rosetta Stone for you guys.

[Katie]

And helping understand she had access to stuff that, you know, that. Those medical journals and articles and stuff. So while I was doing WebMD and everything else, she was going to the real stuff on. On her computer. And we shared ideas all the time. All the time. That neuro ophthalmologist ordered special prisms for his glasses, and we had to get those with the hope that that would improve the focus issues. But it did not. And I have to back up for just a second and tell you that in 2022 and in 2023, Steve had had significant falls to the back of his head. And one of them, our grandson, was with us. And he did knock the heck out of the back of his head, but he didn't become unconscious. We were there, but I didn't. I knew that he was hurting, bless his heart, but he tried to play it off because, you know, he wanted to still be active with, with what we were doing. And I always thought he was a clumsy guy because he just was. My husband could break any daggone thing, you know, he was just. Just a big klutz, it seemed like, all the time. But then in 2023, and this was another thing he didn't tell me about for a long time. He told me after we. He started having problems. He confessed to me that one day when he was out working, he had the chainsaw in his hand and he said he tripped or fell and he fell backwards with the chainsaw in his hand. Luckily, didn't hurt himself with that, but he hit the back of his hand probably worse than that time that he did with our grandson. But he didn't think he had lost consciousness, but he wasn't sure. And at this point, I'm thinking maybe he had some kind of concussion, what do you call syndrome or whatever you can get from. From having concussions. I thought, well, maybe that was. It wasn't sure.

[Dr. Nance]

Yeah, the cte. It's called cte. I mean, it's. It's hyper in the news because there are theories about the. Unfortunately the. The shooter in New York City that from repeated concussions causes mental health changes. And that is a theory. I mean, Aaron Hernandez, the football player, they cause dramatic changes in. But usually it's in personality as well. So it doesn't sound like that was Steve's problem.

[Katie]

Well, nothing had showed on the MRI as far as old brain bleeding. You know, they had repaired or something that he could have had concussions from. Sadly, I sort of hoped that, but no, no evidence of that. So we just kept on seeing other doctors trying to rule out other things. One was an ent, because on the mri, it just happened to show some kind of tumor in his neck. Inconclusive finding in his mri. So we went to the ENT thinking that this. Whatever growth was happening was maybe the cause of stuff. So they drained it, tested it, benign, no problem. I can't even remember what they called it because it was of no significant. Yeah. Another guess that turned out to be nothing. He could have been fine without having that ever drained.

[Aaron]

But what's the time period of all of this from when you started having issues and you're trying to find an answer to, like, right now?

[Katie]

How long? This is probably mid. So a year. A year from when he told me we're still going to all the doctors for nine months. We went to doctors before we figured out what was going on. So we saw the ent, we saw an orthopedic specialist. We saw spinal cord surgeon. We had a spinal MRI done. He had significant damage to his lumbar and cervical spine. His thoracic was fine, but his cervical. This was a new finding. We knew the lumbar from years ago was bad, but the cervical was. Was very bad. Lots of spurs, bulging discs, impingements, all this. So I thought, okay, this is it. This is. Everything that's wrong with his spine is impinging on his nerves that are playing a role in his vision and speech, and that's why he's dizzy and all of that. No two things were not at all related. Multiple doctors told us that both things were not related, but we were very, very close to having a cervical spinal surgery where they would go through. I think they would go through the throat and do something and put an acdf, put a metal spacer in there, and. But the risk of that was further decline in his voice, and it was already getting really bad. And there was the only hope for that was to help improve his balance. That was the only promise that they could maybe give us was that it would improve the balance. Nothing.

[Dr. Nance]

Which is interesting because the cervical spine is the nerves of the hands.

[Katie]

Well, yes, but at this point, I didn't know that.

[Dr. Nance]

Yeah, yeah, but. But I'm just saying, like, that that's not on you. That's on them for. For suggesting that having an ACDF would help with his balance.

[Aaron]

I mean, so what I'm understanding is the doctor's like, we're Going to do this complicated surgery that goes through your neck to fix your balance, but it actually would have just given him better mobility in his hand.

[Katie]

I guess that might have been a hope, too, but.

[Aaron]

But he would still be falling over, correct? Like, it wouldn't solve that.

[Katie]

Yeah.

[Aaron]

Okay.

[Katie]

So grasping at straws and, you know, I was just sure, you know, because you get these results back on your. My chart before you go to. Back to the doctor. And so I thought, this is it again. This is it. This is, you know, spinal cord nerves. All this stuff was all related.

[Dr. Nance]

No, you are in the. The cycle of. When I talk about the stages of misdiagnosis, of anxious optimism, every time you get a new potential lead, you're so anxiously optimistic, and then when it dead ends, you are so sad and doubting. Doubtful.

[Katie]

Yep. Another guess. Even though MRIs didn't show any evidence of it, me and Julie were both his daughter. We were both hoping, well, he's having a series of TIAs, and one day, I even swore he had a stroke right in front of me sitting on the carport. One day in the evening, I was talking to him, and I could see something happening with his face. And I got up, and I looked right at him, and it was just changing right in front of me. His eyebrows. One just went way up above the other one. His got a droop in his lip, and he was. Whatever he was drinking at the time, started drooling it, and I'm like, this is he. This is it. He's having a stroke. This is a bigger one.

[Aaron]

Like, his. Like his face just shut down.

[Katie]

It was just like he became unrecognizable to me right in front of my face. And I called Julie up, and I said, he's having a stroke, I think. And. And again, yay. It's a stroke. It's. This is. You know, we can. We can fix it. You know, just some therapies. This is it. But other than what? He was not feeling anything. There was no other symptoms besides what was happening to his face because he was still talking, even though his speech was getting worse. It wasn't getting any significantly worse that day, if that makes sense.

[Dr. Nance]

Yeah. I mean, even the very, very first time, you said he was having vision issues and speech issues. Well, I asked when did he have brain imaging is. Because to me, it sounded like this is potentially mini strokes or TIAs, one on top of the other. Mm.

[Katie]

Yep. That's what I was hoping for. So other guesses along the way became neuropathy, maybe long Covid. It was really long into the COVID pandemic that he got it. I thought also, you know, we had started those epic not too long ago. I thought that could have been something or a combination of some of his other meds.

[Dr. Nance]

And I have to say, Katie, you know, when we talk about these misdiagnoses, I like to go back to the systems approach. And you think about, is this congenital something he was born with? Is this an environmental exposure, like metals? Is this trauma from his head, you know, falling on his head? Is this genetic? And you and your team have systematically gone through almost all of these. You know, really like thinking, even thinking out of the box. Is it viral? Is it infectious? And just from, you know, I have this list in front of me.

[Katie]

But we have considered.

[Dr. Nance]

I mean, starting with stress, which we obviously know it was not stress. You know, carpal tunnel, Alzheimer's, dementia, heavy metal exposure, vitamin B12 deficiency, neuropathy, sleep apnea, cardiac PVC, Parkinson's disease, long Covid. I mean, this is. This is a lot of work. I don't think we've ever had any guest who has had this type of work before.

[Aaron]

Mm.

[Katie]

We were just. Okay. I have to tell you about this appointment because it leads to something else that happened. We went to an orthopedic doctor, had some X rays done. He had a torn rotator cuff in one shoulder and bone spurs in the other. And he knew he was losing upper body strength at the same time. Everything else was going on, and part of that was because of those issues. But my husband was such a strong guy, so daggone strong. I mean, he could lift and move anything. That's probably why he had the damage there. But at this point, he couldn't. He couldn't help me do anything. Hardly.

[Dr. Nance]

And a lot of things, and I don't want to necessarily use the term red herring, but, you know, he had real symptoms. They just weren't the cause of the problem. And this is, you know, not to belabor the point about the spine surgeon, but you can do imaging and find problems. It doesn't mean that everything requires a surgery or an intervention. Right. So he might have had a small rotator cuff tear. Does that mean he needs a rotator cuff repair? Is that going to fix him not being able to see out of half of his field of vision? No. So I think it's really important for our listeners to hear this, because sometimes people listen. It's in vogue now to get the, you know, the pernuvo. The whole body MRI scan. Well, one of the issues Is that that is going to show you some things that may have absolutely no indication that it would be causing problems. Right. And even, you know, I mean, this is a controversial subject, but when we're talking about mammograms, there is a very high false positive rate on mammograms. And that's one of the things that people bring up, is one of the issues with mammograms, and that it causes a lot more procedures and testing than, you know, would necessarily be necessary. Now, obviously, anything that helps with early detection is a positive thing for. For all women, but can we get a better test that would limit these false positives? Is, I think, where the. So this is just a bigger conversation about you may go through a long diagnosis journey and you may find positive findings, but it doesn't mean that all those positive findings are what is the cause of the. The problem.

[Katie]

Exactly. In the meantime, we are trying other therapies. Speech, occupational, vision, some home health, some outpatients, just to see if anything will help. And he worked so hard at his therapies. He stayed with every appointment, but nothing was working. We went back to the primary care physician because we were getting concerned and all tests were negative. And we saw our primary's pa. He was so good to listen, so good. He's like myasthenia gravis. We're going to test for that. A lot of the boxes for that checked off. I didn't want to dig too deep into that because everything else had come back negative. So I looked a little bit, but per usual, that was negative. He also tested for B6 that was elevated, checked off some more boxes, and ultimately, again, we determined that that was not the cause. Then all the time we're trying to stay positive, but it was just heartbreaking because this once very strong, proud man was beginning to have to rely on assistance of accommodations that I could find to keep our daily life as routine as possible. And he was having to use a walking stick to make sure his balance was going good. He was still working. He knew he was getting important emails, but he couldn't read them all. So I'd have to sit down and read to him. And then his typing wasn't working. And so he'd tell me what he wanted me to type for him. And this was just. Just pitiful. It was. It was beginning to. Just to terrify me. What. What was it? What's. What's going on? Why can't we find an answer?

[Aaron]

And then having to. To have that, I'm sure in your Brain where, like, he probably can't work much longer if he's in a situation.

[Dr. Nance]

And that.

[Aaron]

And from what you've told us already, that was his. A huge part of who he was was his work, right. It meant so much to him who he was.

[Katie]

So, yes. And he had even told his. By this time he was. He had retired from the state. He was deep into his private consulting work. He worked primarily for one firm. And he had told them, you know, something's going on with me. I don't know if I can work much longer for you because I'm having a hard time reading and writing and speaking. And I don't want to misrepresent you or have somebody think, oh, something's wrong with him because, you know, if you didn't know him, you might would think he's drunk on the job or something. And he didn't want anybody to think that, even though he did enjoy his afternoon toddies, you know, but. But he would have never done that. You know.

[Aaron]

He loved that beer fridge, right?

[Katie]

Like, he didn't want anybody to, you know, think that. And he didn't want that to come back to the company he was representing. But they were like, no, we trust you. We rely on you. You work as long as you feel you can. We are not going to push you out of anything. So at this point we were going to, I think our third and fourth neurologists, and I was calling offices daily because appointments were so far out. I actually got two appointments for two different neurologists, but the third and fourth neurologist visits. And I know y' all probably thinking I'm crazy, but I was going to rule out everything. So we. These ended up being on the exact same day. One was with a general neurologist and one was with. What's a motor specialist neurologist who came highly recommended. And they both did the toe tapping in the flip, hand flipping and said it was remark or marketably radio. Kinetic. Radio. Yeah.

[Dr. Nance]

Bradykinesia is just means slow movement.

[Katie]

Okay. So that's what they had documented on one. One of his things. And so the motor specialist agreed with the general neurologist there that a DAT scan was going to be the next test to do. It's similar to an mri, but more looking at the. You might have to help me there, Dr. Nance. But more looking at brain. Specific brain disorders from what I understand.

[Dr. Nance]

Is that it is looking for. It's. It's more like a. A spec scan which is one of those, like nuclear scans where it's Looking for uptake of certain things. And in this case I believe it is looking for uptake of dopamine. So they're looking for.

[Katie]

Yes.

[Dr. Nance]

How is dopamine, Is it a normal uptake of dopamine in the brain?

[Katie]

Yes, yes, exactly. So they both agree that that's the next course of action. The movement specialist ordered a few more blood tests. I couldn't think of why else, what more they could test for. But whatever he tested for was, came back negative eventually. So the DAT scan, the day of the DAT scan we went together but I couldn't go back there with him of course because the radiology and all this and they said it was only going to take like 45 minutes. Well, it was well over two hours. I waited in there. The office was closing, they turned out the lights. I was the only one left in that waiting room. I was like, what is going on? And he said that they had a very difficult time positioning, getting the whatever on his head and getting it in there. Right. And just problems with positioning him in there. And so that's why it took so long. The test came back initially in the doctor, the, the general neurologist said I think everything is good with, with this. But then the radiologist report came back and said something's not right. Some, some. There's. There's odd findings in here.

[Aaron]

Odd findings. Is that all they said or did they give you any guidance on it or they're just like, it's a little weird.

[Katie]

It was written. It led us to start investigating more specific diagnosis at this point that I didn't even want to look at at this point. I was just gonna wait until we get. Because we had looked, gone down through. We had gone down so many rabbit holes at this point. I was like, I don't know what I'm looking at. I sort of let. Turn that over to Julie to look at some more and nothing was coming up good at this point.

[Aaron]

We often talk on the show about how like medical terms need a rebrand. But I also feel like this is a great example of where like you shouldn't have to go. And this is where I think our medical system needs a bit of an upgrade. You shouldn't have to go to your daughter in law who is a physician's assistant to understand your medical records or your husband's medical records. That is a fundamental gap in patients just understanding what the hell's going on with them. Right. Like that should not be required step because what if you don't have someone in your life that is in the medical field, what, you're just supposed to figure it out on your own. And I have an example when I had surgery once and some instructions were given to the person that was with me who doesn't understand medical stuff, and then they parroted them back what they thought they were telling me got it all wrong. Because it was so hard to understand in the beginning that by the time we played telephone, we had no clue what we're talking about. And I think that's one of the things that like, yeah, we maybe can't fix insurance issues right away, but we could fix, fix the communication with patients and understanding the information.

[Katie]

Right. Well, because of these abnormal findings in the DAT scan, they referred us to a movement specialist neurologist. And if you think the other appointments were far out, this was the farthest out appointment. I mean, like it was going to be six months or something ridiculous like this. And I thought, this is absolutely ridiculous. Why do we have to wait this long? This was one of the most frustrating parts of this whole journey, was always waiting for results and appointments. And I became a pest, pretty much. They said, call every day, we don't care. You know, every time I said, put me on a cancellation list. But every day when I called, no new openings, I'm like, y' all don't understand. I'm losing a part of my husband every day at this point. By the time this appointment comes up, he could be dead at this rate. I need something. And we finally got into her to see her young, beautiful. You could tell right away she was so intelligent. Our appointment lasted a very, very long time. She did all the tests and stuff and she did a whole lot more assessments on him. But by this time, I mean, by this time I had a three ring binder full of all the details, all the test results, a list of questions to go through by this time. At all of our appointments, they would say, okay, so Mr. Tedder, tell me what's going on. And he would just like look at me and want me to talk for him because his speech was so slow and he was afraid nobody could understand him but me. And then. But I would make him start off the discussion because they needed to hear him. But then after a couple minutes, then I took over with the speaking. So she did all of her assessments. And by the end of that appointment, she gave us a probable diagnosis. And that probable diagnosis was progressive supranuclear palsy. And I'm like, what is this? What in the world is this? And it's called progressive supernuclear. Is called PSP for short. It's a rare degenerative neurological disorder with no cure. And then I began to research this extensively, and I was trying to be as hopeful as I could because it said people can live for seven to nine years with this disorder. So I thought, okay, I've got. I've still got a good amount of time left with him. And then when you hear that it's. That it's Parkinsonian, you think Parkinson's. Okay, well, you can live with Parkinson's a very, very, very long time. I mean, you hear Parkinson's and you think Michael J. Fox, you think Muhammad Ali, and, you know, they had it for years. And even though that's terrible, Muhammad was around for a very long time. And Michael J. Is still doing awesome things for research and for bringing awareness to this. And so I thought.

[Aaron]

I mean, Dr. Nance and I have talked previously about how there are, specifically at the Cleveland Clinic, there is transplants you can do into the brain that can significantly reduce the effects of Parkinson's on individuals and have them live very small, somewhat more normal lives. But I'm guessing that this is not like Parkinson's in that regard.

[Katie]

Correct? Correct. The reason it's under Parkinsonian disorders is because it decreases or depletes the dopamine in your brain. Breaking it down progressive means it's just going to get worse over time. The supranuclear part of it deals with your vision, and then palsy deals with the breakdown of your muscle control. Am I correct in all that, Dr. Nance?

[Dr. Nance]

Yes. Okay. And, well, the very first thing he said was, I can't see. Right, right, right. That was. That was the very first thing, which to me, that symptom should have guided all of the differential diagnosis. And that you really have to go back to again, not looking for positive findings, looking for diseases that address the symptoms.

[Katie]

Right. But it is quite rare and very unknown, at least around here, to all of these physicians we had seen, all of these neurologists we had seen.

[Dr. Nance]

And that's why I say all the time, you know, the eyes only see what the mind knows, because those doctors did not know what PSP is. Steve was never going to be diagnosed with psp.

[Katie]

Well, we got to her and she said, probable Julie. And I still didn't want to believe that that was it. So we kept on researching things that could be like it, only to find nothing. There was nothing to give to him to help anything other than continue the Carpodova, Levodopa, nothing except do the therapies that you keep. That you're doing, keep on doing the therapies. Hopefully they will stop the digression of your speech and whatever. But he ended up. I think we saw three different speech therapists. We got a prescription for lingraphia device. I don't know if you've ever heard of that, but it's a. Like, it's. It's. It's like a iPad, but a super duper specialized iPad for speech impaired people.

[Dr. Nance]

So it tracks your eyeball movements, Right. And then, well, it's speech.

[Katie]

It's great for people who can't communicate verbally, but when you can't see, it's useless. But it's a $10,000 machine. And so we were hopeful that it would help us communicate, but then by the time we got insurance to approve all that, the vision was so gone, it was useless. So ended up really not using that. What I ended up relying on through the rest of this journey was Facebook caregiver pages. Honestly, caregivers of patients with psp, they were the ones who knew this. They were the ones who lived this. I didn't get tips and tricks from doctors. I really didn't get things from the. All the therapists because they didn't know this. So every time I had a question, I would go on those pages and search for the topic or just ask the questions. So as things progress, I'm like, this is not anything related to Parkinson's. This is more like ALS because he's losing the ability to do everything, and it's happening so quick. When I asked caregivers on that page, I'm like, do y' all think this is more like ALS and not like Parkinson's? And they were like, absolutely. So much more like that. Even though there are similarities that you can't lump them together because it's different, but how fast it comes on and how much it takes away from you is so much more like ALS than Parkinson's. And the caregivers call this the disease that is derived from the pits of hell because it is just so bad.

[Dr. Nance]

So we know that Steve has psp, but that is not where this story ends. And the end of this story. I have never been so shocked, especially as a doctor who I've been in some pretty tense situations with people who are dying, with people who have had severe trauma. But I have never in my life come across a situation that happened here to Katie. So thank you so much for listening, and stay tuned for next week for part two of Katie and Steve's story.

[Katie]

Sam.