Lewy Body Roller Coaster

Navigating the Tides of Early-Onset Lewy Body Dementia with Miriam Owens

February 01, 2024 Season 4 Episode 5
Lewy Body Roller Coaster
Navigating the Tides of Early-Onset Lewy Body Dementia with Miriam Owens
Show Notes Transcript Chapter Markers

When Miriam Owens bravely faced her diagnosis of Lewy body dementia at 54, it was a stark reminder that our health can take unexpected turns. Her story, rich with challenges and resilience, is the centerpiece of our latest episode, offering insights into the nuances of living with early-onset dementia. Join us as Miriam opens up about the changes she's navigated, the importance of advocating for oneself in the healthcare journey, and the empowering role support groups play in fostering community for those affected by LBD.
 
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Speaker 1:

I had my.

Speaker 2:

Welcome back podcast family.

Speaker 1:

Yes, Welcome back y'all.

Speaker 2:

And I was all Wait what that's my line. So okay, mr it's blue on this one. What does it say? Oh my God, we're already we were just before we start.

Speaker 1:

I just want to remind everyone that we're not giving medical advice All right, go ahead.

Speaker 2:

You got the wrong page, mr. It's very good, do do your thing.

Speaker 1:

Okay, and we want to thank all of our listeners and Facebook followers for your patience and understanding. But first let's give a shout out to some of our supporters. Uh, we've got Jane Hooper, Bill Shipman, Antonio and Barb, Eileen McGarady, Nina Berg and Marge Can you sick yeah.

Speaker 2:

Right Now. You got to go find the page that and follow me Because Got it my. Just a reminder. We haven't done this in a while. Um, I mentioned that we do for weekly zoom support meetings now and we haven't shared and shared them in a while. I'm giving, I'm I'm talking slowly so I can find the right page. You found it.

Speaker 1:

I think so Okay. All right For some reason, folks, my computer did not print up the first page and half of the second page of my script, so I'm kind of lost right now.

Speaker 2:

All right, you'll catch up. I think yeah, and that's what happened last week too, but anyway. So we just want to throw out reminders to um the. The link for these support groups are under the announcements on both the our journey with Louis body page and the Louis body roller coaster podcast, facebook pages at the top under announcements, and then all zoom meetings use the same link. I just wanted to throw out a reminder because we really haven't In a while since we talked about our zoom meetings and the times.

Speaker 2:

Uh, mondays and Fridays there are 1130 Eastern, that's for, uh, anybody who has Louis body seeking a diagnosis or caregiver, so it's that's kind of our mixed group. And then there's a Louis buddies meeting Thursdays at 430 Eastern PM Eastern, not just for those who have been diagnosed or are seeking a diagnosis, oh, curry, curry's solo on that one. Saturdays at 3 PM Eastern is for spouses only. And then we now have a widows widower zoom meetings, tuesdays at 430 Eastern. Again, all those zoom meetings use the same link under the announcements. So we hope, I hope you consider joining and, as curry said, people join me at somebody joined today. Sometimes they turn on their camera. Some they they just you know say hey, I'm just going to listen, which is fine, and then you get the. It's uncomfortable. It's uncomfortable for some people the first time they go to attend the support meeting, but most of the times eventually people turn their cameras on and then and then join in. But anyway, I just wanted to remind everybody about those meetings.

Speaker 1:

Okay, I'd like to give another reminder that we're only sharing our experiences, not giving any medical advice. We're just sharing experiences and personal journeys. So let's get this thing started this week. Please welcome our friend, mary Moans. Miriam, could you introduce yourself, tell us for you or from, and how long ago you were diagnosed and how old you were, and then we can ask you some more questions, if that's all right.

Speaker 3:

Okay, sure thing, kerry. Um, thanks for having me on. My name is Miriam Owens and, um, I am from New York originally, but I currently live in Richmond, virginia. Um, I was diagnosed in December of 2022. Uh, I was 54 years old at that time. I'm currently, uh, going on 56. Um, so, yeah, I've kind of newly diagnosed, but we can talk about it, I guess, during the podcast house. I think my symptoms really went back. Um, some of them are good, good ways before that, yeah.

Speaker 2:

Perry always says you can go back. What? Eight years maybe?

Speaker 1:

I can go back eight years before I was diagnosed.

Speaker 2:

Yeah, yeah. And then I always one of those things I wish I could ask Jim, I'm just curious of how many you know. I know when we used to hold hands he used to do that. What you know he's the. His wrist used to um, how to describe this snap back and forth as we're holding hands. But I don't know how far that goes back, um, but that's normal to hear that usually you have symptoms, symptoms many years before even go um, yeah take a diagnosis. Um so, all right, thank you. Are you up, yeah?

Speaker 1:

Miriam, can you share with us some of your first symptoms? You had the ones that made you seek medical attention, and that is what were some of our earliest. That is what some of your earliest symptoms.

Speaker 3:

Okay, so so, yeah, um, some of I think that one of my earliest symptoms, um was like brain fog and just uh, having some trouble thinking uh, which, at the time, um, I am my neurologist. I did have a neurologist at that time who was following me for another condition. We just attributed the brain fog to that, and so, you know, we didn't even think or talk about dementia at that point. What prompted me to ask my um neurologist for referral to a movement disorder specialist was, uh, that I started to have some really, um, significant lapses in short-term memory, Uh, I mean just no recollection of things that had happened just minutes before sometimes, and you know I was in complete disbelief. You know my family would say, yeah, you did, just say whatever, you know, blah, blah, blah. And I'd say, no way, I did not. You know, I would know if I said that.

Speaker 3:

And so it happened, uh, a few times and it was enough to make me think, okay, something's not right. And so I did go back to my neurologist and, um, by the time I got to see her because I had to wait a little bit to get in I had developed a resting tremor in my right hand and so when I got to her. I had that to report as well. So there were the short-term memory issues and the tremor, the resting tremor, and she, uh, recognized that those could potentially be, you know, related to a movement disorder. So she referred me to a specialist, a movement disorder specialist, and he was the one who gave me this diagnosis.

Speaker 2:

So they even said that the short-term memory could have been part of the movement disorder. Or they just sang you a tremor.

Speaker 3:

Just my tremor. I don't think even she at that point wasn't thinking that dementia might be a possibility, one because of my age. You know, even in the medical field, a lot of doctors, neurologists even just don't think, you know, dementia can affect those who are younger. Um, I mean, there are lots of people younger than me who have dementia. So I'm not, I'm not sure why they're so quick to rule that out.

Speaker 3:

But she referred me to a doctor, uh movement disorder specialist, who fortunately was very, very um familiar with Lewy body, dementia, parkinson's, you know. So he, he understood, he, he took a detailed history. I came to him with a detailed uh symptom log which was helpful in making the diagnosis along with the neurological exam. So, um, because my cognitive symptoms preceded my motor uh symptoms that had a lot to do with why he felt it was Lewy body, um, and yeah, that's kind of what got me on this path. My path to diagnosis wasn't really as convoluted, I think, as a lot of people, unfortunately, you know some people it takes years and I know that. But I'm fortunate in that I was able to quickly get diagnosed and on medication almost right away.

Speaker 2:

Yeah, you are fortunate.

Speaker 1:

Hey, miriam, we're talking about the doctors being reluctant to diagnose people who are younger with dementia. I went to my first doctor's appointment in 2016. And in the year 2016, I went to eight different doctors and my wife and I asked each and every doctor could this be dementia? And they all said no, except for the lung doctor, and the lung doctor thought I was because of the hallucinations and the other things I was telling him. He thought I was having frontal temporal seizures, you know, and he tried to get me to go to his buddy a neurologist, but my insurance wouldn't cover that one, so we didn't do it. But yeah, I found that they are really reluctant to say the word dementia to anyone who's under 65? They really are.

Speaker 3:

It's very interesting to me. I went for a second opinion Once I had the diagnosis. I believed it to be accurate. But with a diagnosis like Lewy Body Dementia, of course you want a second opinion and so I sought out another movement disorder specialist in my area. He was really highly recommended in the community.

Speaker 3:

I got my you know, waited for an appointment, I got him with him and it's almost like he totally disregarded my treating physicians diagnosis of Parkinsonism and dementia with Lewy Bodies and he really just looked at me and he was so hung up on the fact that I was on the younger side so, and he even said to me you do know you're 55 or you know however old I was, and I thought, oh yeah, I know how old I am, I mean, but you know, it was kind of insulting honestly, and I just didn't feel hurt or seen and you know, needless to say, I didn't go back to him and yeah, I've just stuck with my original doctor. He's been spot on with his diagnosis and treatment of my symptoms. So but yeah, unfortunately it seems to be far more common than it should be, which is why I'm glad you guys are doing what you're doing with this podcast and the Facebook groups.

Speaker 2:

Yeah, yeah, that's all we always say. We really wish we could just get all the everyone's doctors to listen to the episodes where people like yourself who have a little body come on and describe the symptoms and it's I don't know. I guess eventually we'll stop being curated when people just say you're too young to have a dementia I don't want to call it really body dementia just yet Like they're afraid to say it and when we all know there's medicines that help, you know, to help some of the symptoms. So so you went to two movement specialists and then to this new person that you decided not to go back with. Did they do any like cat scans, cat scans, any of that? Or did you get a? Clinical symptoms, clinical diagnosis?

Speaker 3:

I got the clinical diagnosis and you know that doctor prescribed medication. You know I started taking it the month after I saw him, which was last January. Eventually I did do the SIN1 skin test I was about the middle of last year which came back positive for one of the sites out of the three came back positive. So that, along with symptoms and the neurological exam that he had done, you know, was enough for him to say with a good amount of certainty that this was Louis body dementia.

Speaker 2:

Yeah, yeah that, if you don't know what Miriam's talking about, there's a SIN1 skin test that we did, an episode probably last year. We had him on three times I don't know if it was last year, it might have been 2022. But you can look it up. It's SYN-ONE, just SIN1 test for Louis body dementia, and it'll come right up and you can read information. And they just do, I think, three punch biopsies on your skin, different areas. That seems to be one of the well the newest test to help diagnose LBD.

Speaker 1:

And the people who diagnosed, who came up with that procedure. If you want to look it up that way, it's C and D life sciences.

Speaker 2:

Yeah, yeah, c. And then the letter, letter C, the letter N is a Nancy and then D is a Dald. Yeah, d and D, life sciences, yeah, and now I look that you're like I can't remember the name of the company, but you remembered it so clearly. You're on a younger side, which, but sadly we have people in our support group that are in their 40s that were just diagnosed, and I think we even had one in the late 30s. Do you think? Well, you mentioned that your age hindered your diagnosis, whether things that doctors were talking your symptoms up to as women issues at first. Do you think?

Speaker 3:

I don't think so much women's issues. I think that, like I said, I have a coexisting autoimmune. It's called sarcoidosis and I'm not sure how familiar you are with that, but it's neurological in nature and it's an inflammatory condition. It can affect pretty much any part of your body, but most commonly the lungs and lymph nodes. So I think that a lot of my early symptoms were kind of attributed to that condition. I believe them to be caused by that as well. It wasn't until I really started with the short-term memory lapses and I almost felt as if they were episodes, like I had missed time passing. I just had no recollection of things happening and it was scary. Not so much women's issues, but I think it just got kind of dumped on this other condition that I'm dealing with.

Speaker 2:

Now, yeah, it makes sense, because Lilly does have issues with autonomic system and inflammation and he kind of touches a lot of things. He was calling him a he. Sorry, james, he, as I say, was not with a nice voice.

Speaker 1:

Miriam, were there any other unique challenges that you faced that you haven't shared already? As a person living with early onset dementia, maybe some advice you'd give others in your age group when it comes to seeking the help symptoms you were having?

Speaker 3:

Well, the first thing I say is don't ignore your symptoms. It's real easy to second-guess yourself. I think all of us do it. Sometimes we just say, oh, I'm just tired or I'm just stressed out, or we just second-guess and dismiss our symptoms. But my advice would be, if there is something going on that is troubling and or persistent, it's worth looking into just to see what might be going on.

Speaker 3:

As far as struggles that have been unique to me, being a person with younger onset, louis Body I would say I was still working when I was diagnosed. I had a thriving childcare business and I ultimately had to make the choice to close it because, needless to say, the kids are cute but they are extremely stressful. I had to choose. I knew that stress would probably escalate things as far as my condition and I certainly wanted to be able to have as much quality time with my family as possible. I didn't want the stress of working in the business I was working in to take away from that. So yeah, having to walk away from one's livelihood can be difficult and it was difficult for me. It still is difficult, but I'm adjusting.

Speaker 3:

I'd say the other thing is maybe just questioning everything. Louis makes you question, you know, can you start to doubt yourself because it's like, can I do this, things that you may have been perfectly capable of doing in your life? But I think Louis kind of chips away at my self-confidence. It has chipped away at it to the point where I wonder if I'm capable of doing certain things and if I am physically capable of it, should I even be doing those things? Driving, for instance, I stopped driving because I was having visual hallucinations and having trouble distinguishing sometimes between what was real and what wasn't, and to me it just seemed like it was really not that different from someone who was maybe driving under the influence and not able to fully understand and comprehend what was going on around them. So I did stop driving. So that was kind of a big challenge, because when you drive you can get where you want to go when you want to go. So it just adds another layer of that contributes to the isolation that sometimes comes with a disease like this. So I stopped driving, I stopped working, questioning what I'm thinking or seeing.

Speaker 3:

I mean, louis just makes you question everything. Did I really see that? Where did I, I mean? And then those thoughts that just I just say they're really fast, little things. They just, you know, having thoughts on a bad day, on a bad Louis day.

Speaker 3:

It's like constantly chasing my own thoughts because they just they come and they go. They come and they go, and so I'm in a constant state of flux some days and trying to figure out why I'm standing in a particular room. What was I doing? And that's hard sometimes, because people look at a younger person and think, oh, that's not dementia. I do that all the time. I forget my keys or I forget why you know why I've gone into the kitchen.

Speaker 3:

Yes, everyone does it on occasion, but when it is really pervasive and it's something that just kind of takes hold of you and won't let go to the point where you just literally question everything, and it's so exhausting Sometimes I just feel like my brain is just going to explode because the thoughts are so hard to contain and put in order sometimes that I just want to stop thinking all together. And so that's when I, like today has been one of those days. So the television hasn't been on, because listening to people speaking is a trigger. You know, like the TV and you know just, it's just really tough to adjust to your brain Just doing weird stuff. I mean honestly, louie makes things screwy.

Speaker 2:

Yeah, well, I'd like to. Sadly, that's. We were just talking about that in our Zoom today. What, what were you going to say? I saw your pen.

Speaker 1:

Oh, I was going to say you mirror me talking about people, if they're having symptoms, go check, go get checked out. We can't emphasize that enough because, just like we did in my case, for the first eight years we put it off as I was first off, I was getting older, put it put off that I was just working too many hours and then I wasn't getting enough sleep. And we did that for seven, eight years and then finally I had a an awakening when I was out in California one day that I better get to the doctor. And that's when I let my wife go ahead. She had been trying to get me to go and I just wouldn't do it because we were saying my symptoms were caused by everything except dementia, you know. But yeah, we can't. We can't emphasize enough that people, if you're having symptoms that you normally don't have, go, go get checked out.

Speaker 2:

Yeah, that's all I wanted to say Linda, all right, that's something good to say. Yeah, because it's you know, when you get older, you know things are going to happen as we get older. But yeah, and it's good to start with the early symptoms, because then you have like a running record of things that are going on. So I was going to say yeah go ahead.

Speaker 3:

Symptom log. I was going to say a symptom log If you, if you know if a person can manage to keep on, maybe not even like a whole lot of detail, just kind of you know a date and what happened is really, really, really helpful For me. I did it because I wouldn't remember to what to tell the doctor anyway, but he used that and it did help him with making a diagnosis.

Speaker 2:

Yeah, we always tell people to write it down. Yeah, and your, your wife, had a whole binder, right?

Speaker 1:

Yeah, yeah, I did she. I was lucky. She wrote down every night she was right down what I had done that day, you know and she carried it into the doctor's office.

Speaker 2:

Yeah, so that's important. So, mary, what part of Louis do you find most difficult? You know, I know you've just spoke of a few, and how do you cope? Because you had told me that Louis is an illness that takes away so much, but you try to see yourself as someone walking with it, not suffering from it, which was that's a powerful statement, right there.

Speaker 3:

Yeah, the most difficult pieces for me are the, the interference, the way it interferes with my cognition, which is really broad, because, you know, historically I've just been a person who was, you know, like this, planning, I planned everything. You know, some people might say a type A personality, you know, just really I have always been able to organize things and kind of really sharp mentally. And so the hardest thing for me is you know, the funny thing about dementia and to be aware that I am a dementing, actively dementing which is hard is that I don't always know. It's thinking, you know, when you don't know. That's the hardest part for me.

Speaker 3:

So my perception tells me that I am carrying on, sometimes as usual, and then the feedback from my husband or one of my adult children might be, you know, mom, why would you, you know you just said this or that, or why would you think this or that, which I think is totally normal. And so I think I'm, you know, losing cognition, the normalcy, if I can say that I don't like the word normal, but I think you guys know what I mean, just what I have become used to and not knowing what to expect from day to day because of the fluctuations in cognition. And you know, one day honestly and I know I'm not alone in this, it's just one of the characteristics of Louis body I can be so sharp, just I almost questioned the diagnosis myself. It's like there's no way. I mean I'm this, is, I'm fine, and then the very next day, sometimes, or maybe even later that same day, I'm just, I'm on the sofa and you know, I can't, I don't want to think, I can't talk, I'm just it's. Those fluctuations just are so frustrating.

Speaker 2:

You're not alone in that, because we hear that all the time.

Speaker 1:

Yeah, that's pretty common.

Speaker 3:

Yeah, it's really fresh. For me. That's probably the most frustrating part. And then choosing to see myself as somebody walking with it as opposed to suffering from it. I think it's just a matter of perspective for me. If I see myself as as a person, suffering is almost as if I've got to spend all my time and energy trying to beat it. And you know and I'm not necessarily living my life trying to beat Louis body I'm trying to live my life every day as productively and meaningfully as possible with Louis body dementia, because that's become a part of who I am and it's become a part of my life. I don't remember getting in line and saying, hey, you know, pick me, but this is the hand I've been dealt and I'm just walking with it, trying to make the best of. You know what's not the best situation, but it's mine.

Speaker 1:

You're learning to live well with Louis.

Speaker 2:

Exactly. I'm just going to say that.

Speaker 1:

That's something I always try to tell people is you. You can live well with Louis.

Speaker 2:

Yeah, yeah, and then find purpose. I would mention you. You, you found light and peace in the most unlikely places. Are there any examples you could share about that?

Speaker 3:

Yeah, um, for me, helping, helping and encouraging other people, in spite of my own Right. And what I mean is I have found that when, when my focus is not so much on myself and wondering you know, what's it going to be like in a year or five years, or, you know, am I still going to be able to do this or that, you know, and just all the questions that I could probably spend all day, every day, asking, and there are no answers. Right now, I just feel like light and peace for me comes with encouraging somebody else, and not necessarily just other people, with Louis, just in a world where you could be anything. It's it's cliche, but it's true, you know, be kind, and so I do go out of my way to do positive things for people, other people, um.

Speaker 2:

And so we shop, for everyone should do.

Speaker 3:

Yeah, just bringing light, kind of be a light, and bringing light to other people is what is what makes this Usually, makes this a bearable kind of journey.

Speaker 2:

Yeah, and I know you, kerry, like I, I, I at least I got to believe that I mean you. He gets many texts a day and calls and you always answer him or respond and that kind of takes you away from your own Louis struggles.

Speaker 1:

Yeah, it helps me.

Speaker 2:

Yeah, to help you, to help other people. I know it wears you out sometimes, but Um, yeah.

Speaker 1:

I don't always get back to him the day that they text me, but I do. I get a lot of messages each day from different people. Yeah, I, I should. I may not get back to answer them today, but I will tomorrow or the next day. I try to answer everyone.

Speaker 2:

And I'm glad you answered mine because I just recently found out he thought I was going to keep bringing that up. He just confessed that to me. Yeah, not crazy.

Speaker 1:

And you had mentioned to us about well-meaning people making unsolicited advice. Can you share a little bit about that?

Speaker 3:

Yeah, you know. By that I mean you know people mean well, but when they say things like, um, you know you just need to take this vitamin or or that supplement, or you know, do this exercise. Um, if you would just do that, you know you'd be okay and you know it's it is, I'm just gonna say it's, it is annoying. I mean I know that they mean well, but dementia is a real thing and it doesn't go away because you, you take a vitamin. You know it, it or?

Speaker 3:

exercise or or yeah, it's not. And you know, when people, I know they don't mean to, but for me, when people say things like that to me, it feels like. It feels like blame, it feels like they're saying without saying it Well, you know you're responsible for that. If you would just do this or that, you'd be fine.

Speaker 1:

Yeah, you want to know the, the one that I really uh, get your goat. It really got my goat and it was from a relative, Miriam. They told me that if I had been right with God, I wouldn't have got sick.

Speaker 3:

Don't get me started on that, oh yeah.

Speaker 2:

Like, and I really do think people mean well, but it's, I mean I. How many people have we interviewed, even on this podcast, who doctors like well, if you just lost some weight or you just exercise more, I mean they told Jim, you got to, you know, move more and do this more, and you know, it's just.

Speaker 3:

I guess they mean well, they just it's, it's the last thing a person walking with a chronic illness like Lewy body needs is hard enough. You know, um, yeah, we know. I mean all of us are different, but when you're diagnosed with dementia, lewy body in particular, you know we understand um, or our doctors have explained to us and other like you, the, the Facebook groups I've gotten more information on there on my far from any than I have from anywhere else but so we understand prognostically where we're headed, what's going on, what could have. We get that. But to have the people, the very people who should really just be interested in supporting us through this Um, and I guess they mean well, because I guess they want to fix it yeah, so they're, they're sharing what they think is going to fix it, but it would be so much better if they would just come alongside and and just walk with us.

Speaker 2:

You know, I, I like, I like the way you put that. Yeah, it makes, it makes sense. It's just, we would probably could write a whole chapter in a book on, on things that people say and mean well, or even doctors that have been a whole. Oh, you just need to leave a few pounds, you'll be fine. And that's not as simple as that. Yeah For sure.

Speaker 1:

Miriam. Yes, sir, I have met black people before who had a really hard time getting diagnosed Uh, no-transcript because they don't. They lived in the inner cities and they don't get the same amount of healthcare that we do. And did you have any of those problems? Did your race? Being a woman of color, did that have any hindrance on you getting a diagnosis?

Speaker 3:

I don't think it hindered my diagnosis. But I think what is remarkable and work mentioning here is that having dementia and Parkinsonism has kind of thrust me into circles that I would not have otherwise been in and it is. I'm always blown away by the fact that there are few, if any, people of color in those circles and so it makes me want. I mean I personally think and I don't know, I mean I haven't done any real analysis, but I'm just I've thought about why that would be the case and I think, kind of like healthcare, maybe there is some cultural reasons for that.

Speaker 3:

I know in some communities not all, but in some communities people of color are sometimes hesitant to go and really press in to get a diagnosis such as dementia. In some cultures dementia is kind of like a subject no one wants to talk about. You know that their excuse is made and I've heard things like that. I have family members who have had dementia and they've gone for years because they were just regarded by other family members as, oh well, you know, it's just Uncle So-and-So and he just does that. But there's no real pressing to get an accurate diagnosis and treatment. So I don't think it was a barrier for me being diagnosed, but I do know that those are barriers for other people of color access to quality healthcare. You know, and then I said I always already said you know perhaps just some different cultural perceptions about healthcare in general?

Speaker 2:

Yeah, for sure. I know you share with us about the Rocksteady Boxing Program because that's a Parkinsonian program, correct? You wanna share with us your experience with that?

Speaker 3:

Yeah, it is. I was fortunate to be able to even find one locally, because from what I understand, they're not everywhere. You know, sometimes people wanna get in and they drive like sometimes hours to get into one. So I found one here and I was really excited about it. I started to go to class. I was the only person of color in the class and that's okay, you know. I just feel like when you're dealing with something as serious as dementia and Parkinsonism, race well, race should never be an issue, but especially when we're talking about health challenges as significant as those.

Speaker 3:

But anyway, I started attending this boxing class and there was a gentleman there who never spoke to me Ever since. He never said hello. All he did was glare at me with such hatred. It was really distracting, it was. It made me very uncomfortable. I didn't feel physically threatened by him, but it did make me feel that there was at least one person in the room that didn't want me there, and it's not so much. You know.

Speaker 3:

I did stop going and it wasn't. You know some people will say, oh, you gave him your power and you let him, you know, make you not go, but it honestly just felt like another layer of stuff, like I had enough to deal with it. I just didn't want to go there and have to deal with that too. So I stopped going, mainly because of this man who was, you know, very, very hateful. Silently he never said anything to me, but he was so distracted by my presence that he was, like it, messed up his workout, like he would forget where he was supposed to be and what he was supposed to be doing because he was just staring at me, like he was so upset that I was even there.

Speaker 2:

So Well then, the people running the program. I guess they were just so busy trying to.

Speaker 3:

Yeah, kind of a bit I didn't even notice.

Speaker 2:

Yeah, oblivious to it.

Speaker 3:

Yeah, I was just kind of oblivious to it.

Speaker 2:

But you did. Yeah, I can hear the people saying you gave up your power to this person, but you know you and you did what you know you needed to do to keep from another layer of something added on top of everything else you're going through. So kudos to you for standing up and you knew what you couldn't handle and honestly, I don't think I would have stayed either, because he wants to be in a place like that for sure.

Speaker 3:

Yeah.

Speaker 2:

Let's say, kari, do I I think you mentioned something about one of your doctor's offices is doing a qualitative research about healthcare and disparities. You wanna share about that real quick?

Speaker 3:

Yeah, so there's a position in the movement disorder clinic where I'm treated.

Speaker 3:

She's not my doctor specifically, but she works with the other neurologist there and she is doing she has already done some studies, but she's doing another study to just research some of the whys behind the disparities in healthcare and what we can do to bridge the gap there. And there's already been research to prove and show that it does exist that there are disparities in healthcare. So she's asked me to be a part of that research, which I'm really, really excited about. I have no idea what she would want me to say or do, but I'm just happy to be a part of something like that because it is important. And if I could say that if having I mean obviously would never want to have Lewy body I don't think anybody wants something like this, but if that's the hand I've been dealt, then I wanna do stuff like that with it. I want to raise awareness, I want to talk about healthcare disparities and as long as I'm able to do stuff like that, that's what's gonna bring me the most joy helping and encouraging, furthering research, that kind of stuff.

Speaker 2:

Yeah, and we always well I always say help and make the lives of those behind us to get that Absolutely A little easier. So and I'm glad you're gonna do that study because disparities in healthcare and I know Dr Sarah was on, she has Lewy body, she was on probably our first season several times and she just posted something in the groups about a study being done about women and Lewy body. But first of all I just wanna say we so appreciate you coming on and sharing and your experience and sense. Again, we've heard many times that women seem to struggle more than men, which it seems crazy because it's a struggle just to get diagnosed. And on top of that, women seem to get have a harder time getting diagnosed. And if you look back on that I think it was in the last week Dr Sarah posted some research or some article about that.

Speaker 2:

I think I saw that, yeah, yeah. So I'm glad that more like she's been really pushing like how you got involved, what you wanna get involved with your doctor's doing, she's been really pushing and work with other women neurologists to try to not make the male female such a big disparity when it comes to diagnosis. So what final advice would you give other women who are seeking a diagnosis or already have one, or men too, but what's wrong with that?

Speaker 3:

So I would say to them, male or female, follow your gut. I mean, if something's not right, and you know it's not, keep pushing until you find someone who's going to listen and it's okay to fire a doctor, you know. I mean, you choose the physician and if they won't even listen to you, I feel like a big part of them treating is listening and hearing their patient. And so if you're not being heard, move on. Yeah, move on. You know, no doctor is going to be perfect, but you at least deserve to be heard.

Speaker 2:

We've said that many times, haven't we, kerry? That it's, I guess we're older generation, you know, you, just the thought of saying fire your doctor would never even come out of anyone's mouth. But nowadays, you're right, you need to. If they're not, if you don't feel like you're being heard and you're being pushed aside or saying things you know like oh, it's just because you're, you know, going through those that time in your life, but you're a woman kind of thing. And or like with you, kerry, I mean you went home eight doctors, you didn't stop, you just kept going and going and mean you were, you died of lung cancer and lung cancer and brain tumor.

Speaker 2:

Yeah, we've had it all and you're still here. So, but because you didn't stop, you know you kept you know going on, that's Well.

Speaker 1:

I knew something was wrong, you know, I just didn't know what. Yeah, sure, miriam, you attend our Thursday uh uh Zoom meetings for people living with LBD, and occasionally you will attend the Monday or Friday ones too. So before we end, can you share with us your thoughts on attending support meetings? You know we get new people joining each week, and for me it's so nice to know I'm not alone in this disease.

Speaker 3:

I feel the same way, kerry. I mean the groups do just that. I mean the. I've told my husband many times that the camaraderie, the, the, the togetherness, the, the love even that the group shares is amazing to me because in many cases many of us haven't met in person. Some of us have, but a lot of us haven't. But that's not a barrier. The physical distance isn't a barrier. It's like when we get on the call, I know when I get on there, even if I don't say a whole lot, I can feel the support and the love. And I feel on those calls that if there's something I need to share or want to share, I can do that, not be laughed at or mocked or ridiculed or you know we talk about everything in there.

Speaker 3:

Everything, and that's, that's the beauty of it. You know, I would say to anyone you know, give it, give the Zoom meetings a shot, like you guys said in the beginning. You can come on, you don't necessarily even have to say anything. You know, I've been on sometimes and just put a note in the chat hey, I'm not going to turn my camera on today. You know it's just and it's. You know it's like whatever it works for you, that everybody's just really happy you're on the call and that you made it on. Sometimes I don't make it on and it's just Louis. You know, just being Louis, and you know, sometimes I don't get on the call, but when I do, it always, always, always makes me feel better.

Speaker 2:

Yeah, as we. I mean we do talk about pretty much anything and everything that somebody needs to talk about, but we do have a lot of good laughs. I mean we. It really has become like we get to know as a teacher, you know, it's like you get to know your, your, your students and your people in the Zoom and they all have their own little quirks.

Speaker 2:

And I mean it sounds silly, but one gentleman, when he, when he talks about his wife, he says my sweet Tracy, and everybody drinks. We always have a drink, not alcohol, but something we always have a drink. And you, you'll see, if you're new, you'll see everybody all of a sudden, like everybody on the screen won't drink, or curry will raise his pen, or occasionally someone will slip up and say a curse word. Or there's one older lady who's got this cuckoo clock who goes off at 12 o'clock, you know sharp, and we're like oh, cuckoo clock, and it's it really. Nami from Ireland said it's see, she coined the phrase Louis, love, it really is like you go in there and you just meet these people and you just immediately form a family with strangers.

Speaker 3:

That's what it is a family.

Speaker 2:

Yeah, yeah, it's, it's. I think today's meeting was. We probably left more than we did anything today and just and I couldn't even tell you what we were. I mean, we weren't laughing about Louis or anybody's symptoms, it was just, yeah, there's a lot of funny people in the group and sometimes we laugh about you know. Hey, I did this and somebody posted a really funny cartoon of someone had fallen down the steps. It doesn't sound funny, but it was funny. It made me laugh today and it did make me chuckle.

Speaker 2:

Do you remember what it was? Oh, I wish I would.

Speaker 3:

It was I do my own stunts, or something like that. Yeah.

Speaker 1:

I just don't plan them yeah.

Speaker 2:

And I was like you don't know, like you posting that made me chuckle out loud, like that's just the kind of thing that you get from the groups and I agree, like sometimes you learn more from the people in the Facebook groups than you do from the medical professionals, because the people in the group are living it and they can at least tell you how they're coping with. Like one of the things we always bring up is one gentleman said I, I can't, I can't hit the toilet when I pee. Anybody else have that problem? What do you do? You know, and then everybody speaks up. Well, I do this and I do that. So it's, it's a group where you pretty much and it doesn't matter what you look like we all roll out of bed sometimes and I'm like hey, I'm here, I brushed my teeth for y'all, but that's all you're getting. It really is it just it's it's. It's a good feeling when you, when you leave the group and you see everybody.

Speaker 1:

And the answer what you do when you can't hit it. You either get a transmission funnel, use it or you use a urinal. But yeah, transmission funnel works great, yeah.

Speaker 2:

Yeah, it was just it's. It's that kind of thing Like somebody posted today, which I think he posted in a group in on the Facebook pages. There's this new, you know, like a rail you put on your bed. But now they have he found one that has the rail, that goes on the bed but has a step and has a light also and and an alarm or something. I had him post it because we were like, wow, you know, like somebody's listening to somebody and like designing these things, and there's a lot of people in our group that throw themselves out of bed with their REM sleep disorder. It's just stuff like that and sharing and just being like you you're sharing today, just being open and hearing other people's stories, from those with Louie and and the caregivers, I think it really it really makes you like you said, carrie, that you're you're not alone with it.

Speaker 1:

Yeah.

Speaker 2:

And if you get if you get to meet somebody in person, that's even you know bonus.

Speaker 1:

I've got to say Mary, mary. Every time you come to the group you seem so upbeat and I love your smile.

Speaker 2:

He's like you've got to get married.

Speaker 1:

I'm on my car I'm working on it.

Speaker 3:

Oh, thank you, I do love the group. I don't. I couldn't tell you. I mean, it just depends on the day.

Speaker 1:

Sometimes it's just not a good, you know, and like, like Megan said, megan said, just if you can push your way, you know, just get it on you know, and some days, you know, I try and all I can say is that it's a gruelly day Some days you're struggling, some days you struggle, but some days you come on with the biggest smile that we've ever seen, you know, and and it makes us, it gives us all something to smile about. So I want to thank you for the whole group for that.

Speaker 3:

I want to thank you guys too, because it definitely makes me feel less alone, you know. You know, being a part of the group, yeah.

Speaker 1:

Well, folks, that's all we have time for this week. Thank you again, Miriam, for coming on and sharing your experiences and giving words of encouragement. Do you have any final words you want to tell our listeners?

Speaker 3:

No, I just want to say you know, don't give up. And like you always say, kerry, there's a lot of life left to live after diagnosis. So choose life, choose joy. And thank you guys for having me on. I appreciate the opportunity.

Speaker 1:

Well, thank you for coming on again. Folks, we want all of you all to be a part of the podcast series and share your thoughts on topics you want to hear about. We provide our email address below in the episode description, so please feel free to send us an email with topics you want to hear about or you want us to explore. We'd love to hear from you and get your feedback.

Speaker 2:

Yep and our email is LewybodyRollicoster at gmailcom, or you can send us messages through the Facebook groups, our journey with Lewybody Dementia or our Lewybody Rollicoster podcast group. We can't thank you all for continuing to support us as we do this podcast and we continue to learn and from and with one another as we share and remember. We're doing this podcast for all of us and we really appreciate that you tune in each week.

Speaker 1:

And, as always, we will continue to post the link for the podcast each week for you and our Facebook group our journey with Lewybody Dementia and our Lewybody Rollicoster podcast group, as well as many other groups. So thanks for joining us.

Speaker 2:

Until next week.

Speaker 1:

This is Linda and Curry signing off.

Early Symptoms and Diagnosis of LBD
Early Onset Dementia
Living Well With Dementia
Healthcare Disparities and Personal Experiences
Healthcare Disparities and Support in Lewy Body Disease