Jackie's Story: From Routine Procedure to Cognitive Crisis

 Have you ever wondered about the hidden cognitive risks tied to everyday medical procedures? Listen to our latest episode featuring Jackie Babcock-Brown, who shares her powerful journey with Lewy Body Dementia. Diagnosed at just 55, Jackie recounts how a routine colonoscopy unexpectedly led to severe cognitive complications, unraveling into a sudden and dramatic onset of Lewy Body symptoms. We emphasize the critical importance of being informed about the potential cognitive impacts of anesthesia, especially for those with pre-existing neurological conditions.
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Transcript

Speaker 2: 0:11

welcome back podcast family yes, welcome back y'all and, as always, we want to thank everyone y'all for being still no better at that, and even though I lived in the South for a year or so. We just want to thank everyone for being so supportive and patient. Before we introduce our guest today, we want to remind our listeners that we're not giving medical advice. We are just sharing our open and honest feelings and thoughts as we all live with Lewy body dementia.

Speaker 1: 0:42

Okay, now folks, I always give shout outs to some of our supporters, so this week we've got Michelle Austin, pia Bedard, fred Pounds and Laura Julecki and I'm sorry, laura, if I butchered that last name plus all of our other supporters. So we thank you all. We thank you all.

Speaker 2: 0:59

I appreciate that you always say the names, appreciate that you always say the names. Anyway, and just a quick reminder that we're still holding the four weekly Zoom meetings, and all Zoom meetings use the same link which is under the announcements on both the Lewy Body Roller Coaster Podcast Facebook page and the Our Journey with Lewy Body page, and someone always usually Megan, usually posts the link the day of the meetings, or Dory posts the one on Saturday for the spouses. So Monday and Friday, 1130 to 1 Eastern is for anybody, whether you have Louie Body, you're a caregiver, you're are you looking? You're in the process of trying to get diagnosed. Uh, thursdays at 4 30 eastern time.

Speaker 2: 1:53

Thank you. Eastern is just louis those who have louis body and then saturdays at 3 pm eastern is for spouses. Anyway, we really hope you you consider joining in one of the meetings. You're going to meet a lot of amazing friends that you'll call family.

Speaker 1: 2:10

You'll quickly call family you bet, once you meet us, you can check with us. But okay, folks, I'd like to give another reminder that we're only sharing our experiences, not giving out any medical advice, because we're not doctors. We're only sharing our personal journeys. So let's get this thing started now this week. Please welcome our friend Jackie Babcock-Brown. Jackie, could you introduce yourself, tell us where you are from and how long ago you were diagnosed and how old you are, and then we can ask you some more questions, please.

Speaker 3: 2:43

Okay, so hi y'all, I'm Jackie, I'm from Columbus, ohio, and I am right now 58 years old, and I was 55 when I was diagnosed in 2001. What happened was I had had a history of alcoholism, so, and I was recently sober, and I had been sober for about a year and a half and I turned 55 and I thought, okay, let's go do all the medical things we're supposed to do when we turn 55. Um and uh, everything came back beautifully, um, I had absolutely no permanent effects from the drinking Um, and then the last thing I had to do was my colonoscopy, um, which, by the way, came back perfect also. But um, uh, after the colonoscopy, um, I, I was, I was not, I couldn't think straight, um, for, and it had been a couple of days and I, I still was just really foggy. And so we went to the doctor and I was diagnosed with POCD, which is post-operative cognitive disorder, and he said that it wasn't all that uncommon, and then it usually cleared up within five to seven days and gave me small percentages where it might last a month or three months, you know, um, and at that point it was just that I, I just, you know, just foggy, like medicine hit type thing.

Speaker 3: 4:36

Um, and sure enough, um day six, I was feeling a lot better, um, and I actually, uh, posted a little video to my friend saying hey, you know, I'm, I'm good, I'm feeling a lot better. And um, the next morning, uh, I just took a nosedive into late stage. Louie hit at once, um, hallucination, um, the delusions didn't start right away, that that that actually started from a few incidents that happened early on in the emergency room. Um, because I was kind of in and out of hallucination and I was seeing hallucination on top of reality and and my, I couldn't think and I couldn't communicate and all I could say was I'm not crazy. I just kept telling everyone I'm not crazy, I'm not crazy, um and uh, um and uh. They didn't know what was going on. Um, and the first thing they did at the emergency room was give me a shot of alcohol, yeah, yeah.

Speaker 2: 5:57

Yeah, so yours, yours got um ignited, I guess by being knocked out. See, I just want to jump in because you talked about POCD postoperative cognitive disorder and my husband had to have kidney stones removed and we chose not to have him knocked out because we knew you know what you're going through could happen. But never did a doctor say to me you know, when they tell you all the things that could happen, you know, when you have a surgery like this, you know it's a small percentage, not a word. Yeah, I'm like like I think everybody, well, even less than 55, should be told that that's the pocd is is one of those things that could happen, because they?

Speaker 3: 6:56

I don't know. I have never been warned about that. I have never been warned that it could accelerate any existing neuro issues, including dementias. Um, I had no idea. I was also not told. Um. When I went to get my colonoscopy they said that they were going to use quote twilight sleep. Now our generation recognizes twilight sleep as a totally different drug from general anesthesia. To us, twilight sleep is that crap they give you where you just don't remember what happened Like Demerol or something like that.

Speaker 3: 7:48

I had no idea that I was being given the same propofol-fentanyl combo that they use for general anesthesia.

Speaker 2: 7:56

Yeah, so I guess the reason I jumped in is for everybody listening. Please write down POCD post-operative cognitive disorder or have it written in your phone so in case you're going to go for a routine test. There's another gentleman in our Zoom groups who got knocked out, for I can't remember Curry Tom.

Speaker 1: 8:24

Yeah, I don't remember what it was, but we've had several that have come out of surgery with that.

Speaker 2: 8:30

Yeah, yeah, but that should be. Like. You know, even when I was going through a gym, like I made the, which his surgeons were great because they researched it too, and we all came to the conclusion that they just do a spinal and not knock him out so he'd be awake for. But I never heard pocd before. But anyway, um, so that initiated it. Carrie, I'm going to jump on your, your question, and because you, when we talked to you initially, you shared with us two things, main things you wanted to share with the listeners, and the first one had to do with your initial symptoms, and so can you, you, what would you? Might you might have already. How? How did you get diagnosed? Okay?

Speaker 3: 9:16

um, so these symptoms, I mean I, I just. And then the delusions started. And it was just, I was trying so hard to make sense, things didn't make sense and I would miss. I couldn't tell the difference because the hallucination was, you know, mixed with reality, and so it was, you know, um, but anyway, so, um, my husband finally, uh, you know, they basically were just like oh, we don't know nothing we can do. Bye, it's not psychiatric, bye. Now, who was that? Who was? That was our local emergency room in like Pickle Ohio. It was just a small unit Okay.

Speaker 3: 10:11

So when things kept happening, they recommended that I go to Kettering, which is a big hospital in Dayton, which is about an hour from Columbus, because we weren't in Columbus at the time. That and that's we'll talk about that later. But that was when a doctor started suspecting that it was lupine and they did some tests. Of course my MRI was clear, all of that was clear. But he started suspecting Louie and said that we needed to get to Columbus, to OSU, ohio State University.

Speaker 2: 10:57

And what, I'm sorry. What doctor said that he suspected Louie?

Speaker 3: 11:01

This was. I can't remember his name.

Speaker 2: 11:05

But was it an ER doctor or family doctor?

Speaker 3: 11:07

it was a neurologist at kettering that's what I get for.

Speaker 3: 11:12

So I get for touching my phone curry, sorry um I didn't know when we did get to, uh, to osu, um, to OSU, I did have a DAT scan. However, it was negative, which did not surprise the neurology team there. Now, ohio State has a dedicated neurology team that is strictly for dementia, traumatic brain injury, chronic brain and this they. They don't treat migraines and cancer and right, um, this, this is a dedicated team for our issues. Um, so anyway, um, he was not surprised that the dot scan was negative. Negative because the DAT scan is of course actually a test for Parkinson's, not Lewy. So if your Lewy is affecting anything other than that particular Parkinson's area, the DAT scan is not going to show it.

Speaker 3: 12:19

So then he had me take a nuclear PET scan. He had me take a nuclear PET scan and that was really what kind, what really kind of cemented his diagnosis. And then he put me on the rivastigmine, which, just, you know, that was the final confirmation. But the new PET what it does is it gives, it introduces some kind of tracer, you know some kind of dye or whatever, and it shows how the cells are uptaking this dye, you know wherever it would look.

Speaker 3: 13:07

So you know, like our medicines, our anxiety meds, it's a selective serotonin reuptake inhibitor, right. So that's the kind of uptake they're talking about. So you're talking about how your cells can take the chemicals back up, and that was the test that showed a moderate level, which is not good, a moderate level of reduction in uptake throughout my parietal lobe and into the edges of all the surrounding structures. Um, so uh, that was that kind of solidified things for him. And he started me on the rivastigmine. Um, and I had a what they call a medically robust response to the rivastigmine and as far as he was concerned, that was final confirmation.

Speaker 2: 13:54

Is the only thing that you are now for. Louie is rivastigmine.

Speaker 3: 13:59

That is the only cognitive assistance that I'm on right now, but I do take sleep meds for the remdesivir order and also we've had to increase my anti-anxiety medications. I'm really having a rough time with the emotional roller coaster. So, but no, we did. Now I did well. I was on three milligrams twice a day orally because I'm allergic to past adhesive, and that was good for two years, and then about six months ago we took it up to 4.5 twice a day. So we're still doing pretty well. But that was kind of the diagnosis path, Unfortunately for me. You know, fortunately or unfortunately, I don't know Um, you know, when you start at the bottom, it's like there's this joy of coming back, um, and having your abilities again, but there's also the absolute knowledge of what late Louie is. It's one thing to hear someone describe something to you.

Speaker 2: 15:30

It's quite another to experience it yourself yeah, and I'm just going to say, and curry, I'm going to put you on the spot. Um, there are many people that have the anxiety with Louie, and it's again. This is what, like you just said I don't know if the word's thankful, but I'm, I guess, grateful that nowadays there's no stigma put to that, like, if you have anxiety, it's okay to seek help. Like you know, kyra, you said you didn't even believe in it. Yeah, until you believe in it. Yeah, until you went through it.

Speaker 1: 16:07

I didn't believe it. Or depression, and boy was I wrong.

Speaker 2: 16:13

And then you got medicine to help you with that also. So I just wanted to pull that point out. Don't be embarrassed or afraid to say this is, you know, I think it comes along with Louie, you know, at the anxiety the some people get, like you said, depressed. So yeah, kudos to you for sharing that with us and that you know it's okay to get help in that department.

Speaker 1: 16:40

Jackie, thanks for coming on to share with us what was the progression of your symptoms after that procedure?

Speaker 3: 16:48

Well, like I said, initially it was just fog and confusion, but then on day seven, it was just a nosedive. All of a sudden I was hallucinating, I was having very Tourette's-like symptoms. I kept repeating the word red and I couldn't stop and I didn't know why. And it was crazy. I mean it was was just there's video, um, and and and maybe we can um attach those uh, or or or stick them in the comments when we, when we post this um but uh both. My initial interview, uh contains footage that my husband took while, uh, at the beginning, um, before I was diagnosed. Yeah, I watched those. Yes, you've seen both the original and the follow-up um, so, yeah, I mean I can you know. If people would like to see those, I'm happy to post them um, but it really can explain what it looks like. And I just I think some people may be shocked to hear me now and see those videos from.

Speaker 2: 18:12

No, but it's a source encouraging that you can, you know, yeah.

Speaker 1: 18:16

And Jackie, that's how I was in the beginning and I tried. They tried me on muvastigmine in the very beginning and I couldn't handle it it and Seroquel, but once they put me on Namenda or Mementine, it was like the switch was turned on, you know. Yeah, and it made a big difference, just like the rivastigmine did for you.

Speaker 2: 18:42

Yeah, yeah, yeah, it's, it's, it's, I mean, I guess that's. I'm having trouble putting the right words to what I wanted to say today. I guess it's going to sound strange or positive, louie, that you know you can come back up from it most of the time, but I know you wanted to share with us two things and I know that was a scary time for you. And again, look at you. Now you bounce back enough to do a podcast and share, and I always say that Louie is such a strange disease. But again, I am thankful of Louie. I'm thankful those of you who have Louie can usually spring back from that rollercoaster dips with this strange disease.

Speaker 2: 19:33

So now I'm going to ask Jackie something that she may get emotional about, but I'm going to say you're going to stay strong and just get it out, because it's something she really asked us if she could come on and share the second thing she wanted to share with us. I know it was very hard for you to share when we spoke you know about it before, while we talked about recording. But you said again you really wanted to share, so others didn't experience what you did. So can you share what was happening, that you had to be taken to the hospital. And then what happened there?

Speaker 3: 20:12

So this was the about the third trip to a hospital, and this was when someone had suggested that we go to Kettering because it was a much bigger and more advanced hospital. Shattering, because it was a much bigger um and more advanced hospital. Um, I was at the time, um, in and out, um of lucidity, uh, you know, I, I, I'd be with it for 10 minutes and then gone again. And then, you know, just in and out, um, hallucinating, um, I was, uh, was, uh, my, my big overarching delusion had started by then. So, um, I was pretty paranoid, um, anyway, um, so we had gone to the emergency room because I was just completely out of it and I also had been complaining of what we now we patients, refer to as brain pain. Um, only, I didn't know that's what it was at the time, so I just kept saying I had a headache, um, so, anyway, that was what had prompted the visit, was the brain pain. I, it's just excruciating. Um, and anyway, while I was there, like I said, I was in and out and they had determined you know, of course, they immediately determined that I was not a psychiatric patient, I was a neurological patient, and then they decided they were going to admit me, to do the more tests and scans and things, um, to see what was going on. And um, and so at that point they were waiting for a bed to open upstairs and my husband went home. I was lucid when he left. Um, he said that he was going to go home and feed the dogs and get them set for the night and he would be right back After he left.

Speaker 3: 22:22

I kind of lost it again and I didn't know where he was and I was, you know, the delusion was active and I had forgotten everything. I was, I was starting to hallucinate again and I was just, I just wanted to know where my husband was and so I just went. I didn, you know, I wasn't thinking so I just went looking for him and, um, I found my way out of the emergency room, um, to the parking lot because I thought maybe he would because we smoke, um, so I went out and I was standing in that fire lane that's near where the ambulance bay is at hospitals and I was just standing there looking and waiting and a security guard came up and he asked me what I was doing out there and I said I'm waiting for my husband. He asked me what I was doing out there and I said I'm waiting for my husband. He said I needed to go back inside and I said, no, I I don't want to do that, I'm waiting for my husband.

Speaker 3: 23:49

Um, and the next thing I know, um, some hospital uh orderly type employees came out, um, and one of them started to approach me and he was also saying that I needed to go back inside, and I said, no, I don't want to do that, I'm waiting for my husband. And at that point he grabbed my arm and started to pull me back into the hospital and, of course, I pulled away from him. Um, and then the other guys walked over and, in the end, four groomed men overpowered me.

Speaker 1: 24:36

They basically drugged you back in.

Speaker 3: 24:38

Drugged me back in, yeah, held me to a gurney, took me up to the psych ward and put me in four-point restraints. They slapped me with an illegal 72 hour hold. Not only was I not a danger to myself or anyone else, I wasn't even psychiatric. Um, and the reason that it was for men is because that's how many it took men is because that's how many it took. The one grabbed me, I pulled away, another one came to help and in the end it took four. Then, I guess as punishment or something, they took all of my stuff, all all of my personal stuff away from me, every bit of it, even my slippers oh, wow um, my husband came back a couple hours later.

Speaker 3: 25:49

They didn't say a word to him, not one word. He walked into my room and I was really happy to see him and he asked I said I wanted to go walk around the hall or something and he said where are your slippers? And I said they took them. Where are your slippers? And I said they took them. And when he went to get them is when they finally told him what had happened.

Speaker 2: 26:20

They weren't even going to tell him when he came back, what room were you in Like? Had they taken you out of the? They must have taken you out of the restraints.

Speaker 3: 26:29

Yeah, they took me straight when they, when they when they grabbed me outside, they took me straight up to the locked site ward. And when did they let you out of there? They did finally release the hold about 12 hours early.

Speaker 2: 26:49

Okay, so in that time Rich hadn't come back yet because he went home to take care of things.

Speaker 3: 26:55

Oh well, I was in the restraints. They let me out of the restraints after about an hour.

Speaker 2: 27:01

Okay, okay.

Speaker 3: 27:03

A nurse came in and I think they had dosed me with something because I fell asleep. And a nurse came in and undid the restraints and then my husband got back, so I think he was only gone less than two hours.

Speaker 2: 27:22

Now, I don't know if you'll be able to answer this, but the people that came out to drag you in, to answer this, but the people that came out to to drag you in, did you recognize any of them as anybody that like a nurse that had talked to you or it was helping you the whole time? So these, these were just security people thinking no they.

Speaker 3: 27:41

They were dressed like medical personnel yeah, orderlies, you know they orderlies, um or something, but they weren't anyone I recognized. It wasn't my nurse, it wasn't any doctor or nothing, nothing. And then nobody tried to talk to me. Nobody tried to, nobody tried to convince me to come in or call me down or anything like that. And I wasn't being a danger. I wasn't in danger. I wasn't out in the middle of the parking lot or the street or anything.

Speaker 2: 28:17

I was standing right there yeah, were you still in the the hospital gown?

Speaker 3: 28:22

yeah, yeah, okay um, which that was the first failure. They didn't even manage to keep me from walking out of the emergency room and I just want people, please, please, do not leave your loved one alone in the hospital, not for five minutes. I don't care if you have to call your cousins, brothers, uncles, second. I don't care who you have to call your cousins, brothers, uncles, second, I don't care who you have to call.

Speaker 2: 28:53

Yeah, that's I was going to say what. So you know the reason that and we talked about this before we started recording and Jackie wanted us to ask this last because we knew that was going to upset you. But I'm proud of you for sharing it because people need to realize that, especially with Louie, because you can go from zero to 180, you know in just that little bit of time that your husband went to go, you know, take out the animals or feed the animals, and hospitals are not equipped to deal with us.

Speaker 3: 29:30

Just accept that, Please, everyone. Don't. Even if they said they're going to tell you oh, we can handle it, no, they can't, they can't.

Speaker 2: 29:40

Yeah, I always say, like there's a new book, that NIH came out with a new Louis book. It's not brown, it's purple. I just got a whole bunch of purple, green and yellow on it. Just go on to NIH or even the LBDA site and request booklets, because I think I got 10. And I shared this before is every time I went to a doctor with Jim, I was handing them out just to help educate people who don't have a clue about Louie body. But hopefully you've heard, you could hear in Jackie's voice why she wanted she felt so moved to share this story, even though it was painful. Is, yeah, you just don't leave your loved one with Louie alone in the hospital, because I'm impressed that you can remember everything that happened there, because clearly Louie hit you and you're like well, where's my husband? I've got to go find my husband and I agree somebody should have been there, not to you know.

Speaker 3: 30:49

Let you walk out yeah, um, you know, so it was just, but they're unfortunately, I do remember, and, um, that's been a big problem. Um, there's a lot of PTSD from it.

Speaker 2: 31:15

Yeah, but listen now. Okay, I'm not a therapist, but I'm. I'm hoping for you. You've let it out now to like all these people who are listening, so you can let it go and somehow in your brain think, okay, well, I made that a positive because now I've shared it with people so it doesn't happen to someone else. So try to if, if it creeps into your head, think about today that you, you know, you let it go and it's helping somebody else, so you went through that to help others.

Speaker 3: 31:49

That is the only thing that lets me accept my onset and everything that happened to me is being able to use it to help someone. There has to be a reason for that nightmare. There has to be a reason for that nightmare. There has to be a reason. I can't accept things unless there's a purpose. I can handle difficulty and suffering if I can find a purpose for it.

Speaker 2: 32:17

Well, here's your purpose. I'm hoping people who listen, you know, don't leave their loved ones alone, because you don't know when Louie is going to. You know, wear its ugly head, you don't?

Speaker 3: 32:31

And now, please people. I hope nobody thinks that I'm talking about actual care facilities, where they're, you know, memory care. That's not what I'm referring to. I'm talking about your everyday hospital.

Speaker 1: 32:46

Oh, we've talked about. We've talked about emergency rooms before. You know you're a lot like I was. My initial symptoms started with hallucinations in the very beginning and we made the mistake of going to the emergency room three different times, you know and they ended up. One of them said that I was an alcoholic and at that time I hadn't had a drink in like 30 years. You know, uh, but yeah, but you know they're. They're not set. They're not set up to handle, uh, people with hallucinations or anything like that. They're just not. I try to tell people don't waste your time going to emergency rooms, don't waste your time and your money because they can't help you.

Speaker 2: 33:33

Well, I will say, now that I'm seeing the other end of it with my daughter going through nursing school, that the younger kids that are coming out of the medical you know, coming out of school and into the medical field, seem to know a little bit more, not, you know, not like we would all want it to be, but I think if you do have to go to the emergency room, have that book and there's also a you can order. I don't know if you can order more than one, but there's a bigger booklet. It's like the size of a paper.

Speaker 1: 34:07

Yeah, for the physicians.

Speaker 2: 34:09

For the medical field. So, if you can get a hold of them I don't think I think that one was only from LBDA, it was not through NIH, but that's what I'd say arm yourself, you know, because there are times you're going to have to go to the emergency room for something you know. But if it's, yeah, if it's something like what you're talking, you and Curry are talking about, Right, I mean, if you know it's Lily, I probably wouldn't bother with the emergency room.

Speaker 3: 34:39

You know you are going to have to go for other reasons if you have an accident or hurt yourself or whatever. Um, uh, one of the things that that I decided to do and this is something I would really encourage people to think about um, my medic alert bracelet actually says, in all caps, do not medicate. Um, and the reason for that is that if you are in a car accident, um, all of the drugs that they just immediately start pumping into people, um, for traumatic injury, all of those are horrible for horrible, horrible for louis um, so you want to I we put that on there so that they at least will contact the neurologist before they start pumping drugs in um, yeah that's good that's good to have that.

Speaker 2: 35:34

I just want to quickly ask curry, have you gotten your bracelet yet? Because I know your dad your jazzy's fixed and you're going to be zooming through that town yeah, I haven't gotten me my bracelet yet.

Speaker 1: 35:44

Okay, and why I get?

Speaker 2: 35:45

my finger.

Speaker 1: 35:47

I just keep putting it off yeah, yeah, I'm gonna.

Speaker 2: 35:51

I'll text your wife and remind her and tell her where we got jim's.

Speaker 3: 35:54

I was gonna say who do we need to get in in touch with to make sure?

Speaker 2: 36:00

I always tell on him, so he's used to it. Okay, yeah, as friendly as we are and he's like my big brother, I'll throw him under the bus in a second.

Speaker 2: 36:08

Oh yeah she didn't have that at all well, you stuck me, you made me sleep in a chicken coop. After that I'm like I don't feel guilty throwing, but it's, I know you might. I do it because I love you and I know you might forget. And you're, you're you and you know you just, and we don't're you and you know you just, and we don't want anything to happen to you.

Speaker 3: 36:26

Yeah, I appreciate that.

Speaker 2: 36:28

Yeah, you can be stubborn most of the time, so I know, I know how to go around it. Go to the boss.

Speaker 3: 36:35

You know it doesn't have to be a bracelet. You can get the necklace thing that looks like dog tags.

Speaker 1: 36:42

I plan on getting the bracelets, but the one I was going to get would have fit on my oh, the thing that tells you your heart rate and how many steps you take. But mine, my band broke and it's one that you can't get a new band for, and the clip I was going to have would have gone on that bracelet, would have gone on that watch band. So now I've got to go back and just get a bracelet instead of just the tag thing. But yeah, yeah.

Speaker 3: 37:16

As a matter of fact, I put mine. I happen to know where my good bands are, so I wear my Medic Alert bracelet on the wrist that has the good veins.

Speaker 2: 37:26

That's a good idea too. Yeah, look at that, look at all you're sharing. I'm like I didn't think because I'm like I didn't think about that.

Speaker 3: 37:36

Yeah, I just want to make sure they see it.

Speaker 2: 37:39

Yeah, yeah, yeah, that's good.

Speaker 1: 37:55

All right.

Speaker 3: 37:57

Curry, you want to ask your next question. You bet, Jackie, you've been through the wringer with Louie so far but, like podcast Linda said, you're doing much better. You know, if they're just coming up with the, I don't know, I don't know, I don't know, I don't know. I would really push because the imaging is so iffy. I would push for a trial of Aricept or Exelon or Memento I can't remember Memento, the one that you, because Louis is unique in that all of these medications can slow decline in other forms of dementia, but only with louis will you have a dramatic improvement in symptoms and that can can be the quickest way to get people on the right path towards the, because a lot of them they're. They're looking for something they can improve. They can prove right now they don't. They can prove right now they don't. They don't even like, they don't want to diagnose louie, not only yeah, we heard that a lot of people.

Speaker 2: 39:10

Oh, his pen is up, go ahead curry and and jackie.

Speaker 1: 39:13

I want to add also in my case I had better luck with my general practitioner, uh, of trying different meds, and so you people, you might, instead of trying to be a neurologist into giving you, giving you some something for trial, ask your gp to treat your symptoms and and see if they will. That's just what I wanted to add in there yeah, that that is actually a really good idea.

Speaker 3: 39:43

Um, especially if you're dealing with areas where, uh, specialized care is difficult to get, or um, because they tend to get this little complex, where I'm the neurologist, like I'm the neurologist for the whole state, um, yeah, you know, and and and yeah, and so they tend to get a little egotistical. I'm, luckily, you know, I'm, I'm in a dream. As far as for for Louie patient goes, I mean, I'm at a medical destination city, which is great, but that is not the case for everybody and you're right, a lot of times, general practitioners are much more willing to investigate and try different things. They were in my case, yeah, yeah, yeah, yeah.

Speaker 2: 40:31

So let me, let me ask you this final question and our, you know, kari always says there's a lot of good life left after diagnosis. So how do you handle the ups and downs of Louie, yet still find joy with your husband and your family?

Speaker 3: 40:48

You know that has been recently. That's been a struggle the last few weeks. Normally my swings are a little farther apart, but the last couple of weeks it's just up, down, up, down, up down, um. So we take it as it comes, but um, for instance, last weekend I, or the weekend before one day anyway um, I went to a gathering of friends.

Speaker 3: 41:18

Um, we gather once a year, um, and I went down and spent the weekend and there were some difficulties but we dealt with them and these were people who knew me well enough that they've known me since I was 14. So we still do things. The Ohio State Fair is coming. It's starting in just a few weeks. State fair is coming it's starting in just um a few weeks, and, um, I want to encourage everybody to check with your local festivals and fairs. Um, ours has a neurodiversity day, uh, where they turn like so all the lights and the music and the loudspeakers are off, but all the rides, everything's still running, all the attractions, everything can be done, but the noise level and the the visual issues have been brought way down. Um, even the game barkers that are normally out in front of you know yelling hey come, come, come.

Speaker 3: 42:16

They stand behind their counters and talk in a normal voice, and they don't speak until you come up. So it's they really involved.

Speaker 2: 42:25

The entire staff, um that is a terrific idea yeah, that's, I'm just I'm I'm amazed yeah that's why I'm like my mouth is hanging open, because I'm like, oh my god, that's like, that's amazing. Now what? What is that ohio state fair? You said that this is at the Ohio State Fair.

Speaker 3: 42:43

But I would encourage everybody to check with, especially at the county fair or state fair level, that they may very well have something called Neurodiversity Day and it's really geared. You know, it's basically a push for autistic kids and neurodiverse children and things and that's the other joy of it. Not only do you get to enjoy the fair and get your phone okay, but I saw so many instances of these little people so bravely trying things for the very first time and just the joy on their faces when they were successful at it. Get out there.

Speaker 2: 43:28

I think you should. You should call the, the state fair commission, and tell them what you just told us that even though it's it's makes sense that they do it for the autistic kids but tell them how they're helping people like you also enjoy it.

Speaker 1: 43:45

You enjoy a day and I'm with you on the thumb up takes, but corn dogs are mine.

Speaker 3: 43:54

I love the steak here, corn dogs yeah, what you want here, forget your corn dog. What you want here is fresh ohio sweet corn that has been roasted on a grill, and then they just peel it and, with the husk still attached and everything, they dip it into a big vat of melted butter.

Speaker 1: 44:11

Oh yeah.

Speaker 2: 44:13

Do they put bacon on it? Because Curry won't eat it unless it has bacon.

Speaker 3: 44:16

You can get bacon and of course, we have deep fried everything here, Minute on your lips forever on your hips, kind of food?

Speaker 2: 44:25

Yeah, wow, that's amazing. All right, curry, ask your last question, buddy, yeah.

Speaker 1: 44:32

Jackie, do you have any final words you'd like to share with our listeners?

Speaker 3: 44:40

You know Curry's right there is life, and it may take you a little while to realize that. It took me quite some time. Um, you know, I was so stuck on the fact that I had a terminal diagnosis it didn't occur to me well, okay, but you're not likely to die today and jackie.

Speaker 1: 45:02

I'm sorry, jackie, just like you was talking about going to the state fair. I always tell people that you can learn to live well with louis, and you're doing that yes, I am getting there.

Speaker 3: 45:16

Um, yeah, you know that. So the only other thing I wanted to very briefly mention and anybody who has contacts, please do some but I would like for some of us to try to get a better cognitive test for us Lewy patients, because the ones they're using are, unless you catch a Lewis patient on a down day when we can't do anything, um, we just we don't have that gradual decline, you know. So the cognitive tests, we're either going to get a perfect score or we're going to completely crap it out.

Speaker 2: 45:58

Yeah, we've talked about that, how, how people with louis seem to have all their neurons firing when they go to a doctor, and you know that's one of the reasons why sometimes it's hard to diagnose Right and you know that test doesn't test our higher executive function.

Speaker 3: 46:16

So you know, instead of asking me can I do A1, b2, c3? Why don't you try asking me if I can multiply 157 times 246 on paper? That's probably a better test for a Louis patient. Yeah.

Speaker 2: 46:33

Yeah, well, I want to thank you, jackie, for coming on and just we've laughed a lot in the last 20 minutes, so remember that Like you got through sharing that second part and it's going to help a lot of people. And this is. I just want to give the two cents here because this is normally what happens in a Zoom meeting.

Speaker 1: 46:54

Yeah.

Speaker 2: 46:55

We always come in laughing about something and then people talk and ask questions and share how they're feeling, but there's a lot of laughter. So, um, just consider joining one of the one of the zoom meetings. You can just come on and listen. You don't have to turn on your camera until you see that we're almost all of us are harmless as you know, I'll admit, I'm not safe.

Speaker 3: 47:20

Um, I do bite, but it's okay, it's online. I can't reach you. That was one thing I did want to let everybody know. I know I don't frequently attend Zoom meetings. It's not that I don't want to see y'all I really do but I have such horrible post-social anxiety and it just kills me for days. Yeah.

Speaker 2: 47:47

No worries on that.

Speaker 3: 47:49

So it's not that I don't like everybody. I love everybody in the group.

Speaker 2: 47:54

No worries, what were you going to say, curry?

Speaker 1: 47:58

I lost my train of thought all of a sudden. That's all right, but anyway, well, folks, that's all we have time for this week. Jackie, thank you again for coming on and sharing your experiences and giving words of encouragement to our listeners. We want all of you to be a part of our podcast series and share your thoughts on topics you want to hear about. We'd love to hear your feedback and, folks, I want to take a minute here. Remind you all, on september 14 14th of 2024, this September, we're all meeting here in Caney, kansas, just for a day, for a little get-together, so we can meet and greet with everyone. Because we've always said you know, wouldn't it be great if we could all meet one place and meet in person? You know, and we're going to do that this year and hopefully we do it every year. But I just want to remind you. We have all that information posted in both groups on on Facebook.

Speaker 2: 48:52

Yep, yep, yeah, that's going to be a pretty powerful day.

Speaker 1: 48:56

Yeah.

Speaker 2: 48:57

And, anyway, send in your comments and suggestions If you have either, or you want to be on the podcast to our email at louiebodyrollercoaster at gmailcom, or just send it through Messenger on the Facebook pages, because that's probably easier than the email and we can't. Thank you all for supporting us to keep this podcast going as we continue to share and learn from and with one another.

Speaker 1: 49:26

And Jackie, I want to say thank you again. You've done just a terrific job on here today and we really appreciate you coming on and folks. As always, we will continue to post the link for the podcast each week for you in my Facebook group, our Journey with Lewy Body Dementia and on our Lewy Body Roller Coaster podcast group, as well as many other groups. So thanks for joining us.

Speaker 2: 49:49

Until next week.

Speaker 1: 49:50

This is Linda and Curry signing off.