Lewy Body Roller Coaster

Navigating the Complex Path to a Correct Lewy Body Dementia Diagnosis

Linda and Curry Season 5 Episode 23

How do you navigate the often confusing path to an accurate Lewy Body Dementia (LBD) diagnosis? This week we talk about what it’s like when Lewy gets ahold of you and many stories of how Lewy is misdiagnosed. We hope sharing these stories helps those seeking a diagnosis to better arm themselves with notes to take to the doctor as we unravel the complexities faced by those living with LBD and their caregivers.

A shout out to all of our supporters! We couldn't do this without all of ya'll. xo

Should you wish to bless us with your support you can  use links below.

Copy and paste link, if needed

https://patreon.com/lewybodyrollercoasterpodcast
the GoFundMe page at
https://gofund.me/c416ecb6

We have listed all present and past Patreon and Go Fund Me supporters in the Announcements page of the Our Journey with Lewy Body Dementia and our Lewy Body Roller Coaster Podcast Pages.

We will still  give shout outs each week but, we posted supporters under Announcements on our Facebook pages.

Thank you for listening each week.
Don't forget to join our Lewy Body Roller Coaster Podcast Facebook page.
If you have a topic you would like us to discuss or wish to share your thoughts on any episode, please email us at lewybodyrollercoaster@gmail.com 

Support the show

Speaker 1:

Hello and welcome to our podcast about living on the Lewy Body Roller Coaster a podcast for Lewy Body Dementia patients and their families. Presented by Lewy Body patients and their families.

Speaker 2:

You will hear firsthand the ups and downs and twists and turns of Lewy Body Dementia From families directly affected. We'll share our support and experiences on all things Lewy Body.

Speaker 1:

We're your hosts, Linda and Curry. I have a loved one with Lewy Body Dementia.

Speaker 2:

And I am living with Lewy Body Dementia.

Speaker 1:

Let's get started. Welcome back podcast family.

Speaker 2:

Yes, welcome back y'all.

Speaker 1:

As always, we want to thank you all for supporting us. We always provide the links in the episode notes below the episode notes, if you want to learn more about becoming a supporter.

Speaker 2:

And, as always, we want to send out a special shout out to a few of our longest supporters. We want to send out a special shout out to a few of our longest supporters. I want to start with Matthew and Miriam, Jay McLean, Tom Conley, Cindy Marcia Treffman, Phyllis Banks, Nancy Guerrero, Darling Passmore, Armstrong, Ginger Gilmore, Sheila Fury, Chris Oaks, Elisa Mahoney, Rita McCord and, our newest supporter, Cherry Lawrence. It is because all of y'all and all the others, we will continue to give shout outs every week so that we can keep sharing experiences and information that can help each other. So thank you again and remember that if you have Lewy body dementia and you would like to be a guest on our show and talk about your journey, or if you're a caregiver or an advocate for someone living with Lewy, please contact myself or Linda Zipula through messenger or email at lewybodyrollercoaster at gmailcom.

Speaker 1:

I really like how you say my last name. I like how you put them. You say it all the letters together, and I like that you put them. You say it all the letters together, and I like that.

Speaker 2:

Not a lot of people do that.

Speaker 1:

You are Like I said, that's the American version. Apparently, it's Sipuła in Polish, so anybody from Poland? We found that out when we went there. They were like oh, sipuła. I'm like no, it's Sipuła, and they're like like no. So we learned um, but anyway, um, and I just realized again where we decided to record, right when everybody starts coming home on your end that's why you always.

Speaker 1:

The internet's always wonky for you guys, yeah our internet is really bad yeah, around three ish your time, but anyway, um, as we've shared many times, please consider joining us in one of our support meetups through Zoom. We do one on Mondays and Fridays, 11.30 Eastern For anybody with Louie or caregivers. One on Saturday at 3 pm Eastern is for spouses only, and then Kari does one for just those with Louie body on Thursdays at 4 30 eastern. The links are the same for all of them, posted on their announcement curry. Has facebook changed the announcements, because I always go to the announcements to click on zoom because I don't have it memorized and it looked like the announcements were. We have to check that.

Speaker 2:

Yeah, I'll check it, I don't know.

Speaker 1:

Maybe zoom did a. You know how they do that. Uh, yeah, updating stuff, but anyway. So the links are the same for all the groups. Uh, we hope everyone listening will consider joining us each week. And before we bring on, well, we don't have a guest today. Today it's just me and Curry. Sorry about that. Those of you that have been attending support group know that I'm in the middle of a big life change right now. Hopefully I'm not in an echo chamber I feel like I am where I am now because I don't have carpet, but we want to share. I'm trying to put this in our notes each week to remind people that I am podcast Linda, and Curry's wife is also named Linda, so for those of you listening, I'm his little sister.

Speaker 2:

Exactly.

Speaker 1:

Yeah, just so you know, Because there's people that are still posting about you know. I guess they don't because we don't say it all the time. I guess they just realize that I'm your better half, which is fine, you know. But I don't want to take anything away from the real.

Speaker 2:

Curry's. Linda, yeah, so yeah, everyone gets confused. Uh, when I post something with the name Linda in it, I may be talking about my wife, but they think I'm talking about you.

Speaker 1:

Yeah.

Speaker 2:

And then many times they'll say oh, you and Linda, you and your wife Linda do such a good job on the podcast. They don't realize you're not my wife.

Speaker 1:

No, but she does do a nice job behind the scenes. Look how nice your hair looks, even though nobody else can see it. Because I know when we taped last week with Naomi from Ireland, curry took off his hat and we were like, whoa, you need a haircut, buddy. We weren't used to seeing you without a hat. But anyway, let's get going. I just wanted there's only a couple things I wanted to talk about this week. Um, and one I'm gonna put you on the spot a little bit. Curry is because I know you you told me you've been having like four out of five weeks. It's been rough for you. So can you, can you share with us how you are when this happens? And because you said it happened before and yeah, yeah, talk about that for others yeah, part of it.

Speaker 2:

Uh, the biggest thing is I've always, from day one, I go through periods of uh I call tensing up, where I can be in my recliner, trying to get some rest or something, and my whole body I mean every joint I got and every muscle I have just tenses up and it hurts and I have to get up and walk around, go out back, go out front, smoke a cigarette, come back and try to do it again, and still can't. And a lot of times, most times when that happens, it lasts for about six hours. So I've had that going on. And then also I started something new four weeks ago and that's interior tremors.

Speaker 2:

I've never had those, as I can remember, and it's not, it's not anxiety and it's not like it's not like a coffee I've been making coffee or anything like it. It's a lot worse than either one of those. It just feels like my fingers, my wrist, my arms, everything's wanting to jump out of my skin. Real bad. And then it went nonstop the first two weeks. I mean just stayed with me 24 hours a day for those first two weeks and I mean it goes all the way down to my feet. Every part of my body feels like it's just shaking inside real bad and it went solid for 24 for two weeks and that's why you were so tired, right?

Speaker 2:

yeah, oh, yeah it just wears me out and it wears me out and the fatigue, it just exasperates the fatigue and also my shortness of breath gets real bad during those, and so it slacked off the third week and then it came back on last week.

Speaker 1:

How is it now? How is it today?

Speaker 2:

They came back this morning. They had left Saturday or Sunday and came back today.

Speaker 1:

And so you nothing changed, like you didn't have extra stress or anything, or no, nothing, nothing changed.

Speaker 2:

No same medication. Everything you know, same changed. No same medication.

Speaker 1:

Everything you know, same, same old, same old yeah, so it's just yeah, when you're going through this, what advice would you give others? When they hit that louis low, because you know you, you said you, you've been through this before and then you, you came out of it, so what advice would you give others?

Speaker 2:

Well, you know, I don't know, I just kind of ride it out. Linda rides it out. She talks about it quite a bit when it's going on with me. But you know, the first time it happened to me, or one of the first times no, it's not the first time my doctor put me on a muscle relaxer when it first started five years ago, and that worked good for about three, three and a half years and then apparently that muscle relaxer quit working so he put me on another one and it's worked good, I mean.

Speaker 2:

But still during all this time I still do the tensing up every so often. I mean it's, it can happen during the day, it can happen at night, it can happen in the morning. Uh, it seems to happen more in the afternoon or evening times, uh, but I I have had times when it starts like at three o'clock in the afternoon and it lasts all night long. Well, matter of fact, many of those times when that starts is are the times when I'm up like 32 to 36 hours straight. You know, because you, you can't get no rest when, when your body's tense enough, yeah, but as far as advice to others, I don't know, mention it to your doctor if it's something new. There's so many things that go on with me now that we don't even bother going to the doctor about because there's nothing that they can do about it. We've learned over time, but I would tell people to you know if it's something new, get hold of your doctor and let them be the judge yeah, so what?

Speaker 1:

what do you do to keep yourself self-motivated and seen when you're on a downward swing? Are you listening to music just to try to get through those tense times?

Speaker 2:

Well, I listen to music. I used to listen to music all the time to get me through it, but now I watch videos and listen to them. Linda got me a new set of headphones that is Bluetooth, so I can watch my videos while she's watching TV and it doesn't interfere with her.

Speaker 1:

Yeah, that's a good idea. Well, you are an amazing human being, Curry, and of course we're recording later in the day, so we won't be long today, Because I know Jim is kind of on a downward slide right now too. I know it has to do with a lot of stress going on in our lives right now, but I just feel helpless for you guys who have it. But doing this podcast allows me to feel like I'm at least trying to educate others and help others whether caregivers or those living or seeking a diagnosis know what to ask or do while dealing with this disease.

Speaker 1:

So that brings me to the main topic for this week. You want to jump in before.

Speaker 2:

I say that, yeah, before we go're going, for I didn't know these interior trimmers were a thing until I think it was. Last week I mentioned it to our group's neurologist and she told me that yeah, they're. They're a real thing, and but they're more on the parkinson's side of the specter than the levy body side.

Speaker 1:

Yeah so, but I was at least glad to find that they were real and I wasn't just something I was imagining, that I was feeling yeah, well, I know jim's uncle who lives I talked about before, who's in his 80s now, has parkinson's really bad, and the last time we were able to go out to eat with him before COVID, we were sitting eating dinner and he'll just pop up and have to move. He has to walk.

Speaker 1:

I'm the same way with my back Lately. It's been really bad and it's three back fusions. But moving and walking is better than laying on the couch. If I get it's like three, four in the morning, I'm getting up and I have to move because, yeah, so I, I totally I mean I don't have louis body, but I know that frustration where you just feel like you have to get up and move yeah, yeah, I have to just get up and walk, yeah, and then I'll I go back and try to sit down and relax again and I can't, and I get up and start walking again.

Speaker 2:

You know, all night long or all day long, whatever text me in the middle of the night because chances are I'm not walking too.

Speaker 1:

I actually walked outside. Um, I just decided in the new place we are. I'm not walking too. I actually walked outside. I just decided in the new place we are. I'm like, oh, I'm going to take Roxy out back, and it was, I don't know. It was like 1.30 in the morning. We're kind of close to other people and somebody was coming home and they scared the bejesus out of me. I was like, and they were really nice, like hey, how are you I really nice? Like hey, how are you?

Speaker 2:

I'm like oh, my god, you scared me.

Speaker 1:

I'm like, hey, good morning, night morning, right, anyway. So what we wanted to talk about today? Um, we, we pretty much ask everybody that comes on as a guest to share about their the diagnosis step. The diagnosis and it's it's always a big topic of discussion, especially when somebody new finds one of the Facebook, the Lewy Body Facebook pages. So we just wanted to share with you all some of the conversations and the things that people were talking about, or mainly about the misdiagnosis experiences, because I think we can learn.

Speaker 1:

Those of you looking for a diagnosis can learn from those. So we're hoping that you can take notes and we just felt we'd share some of the things people have encountered while trying to seek a diagnosis. And we're hoping you can take notes when you go to the doctor because, sadly oh okay, sorry, my screen blinked Sadly, as we have shared many, many, many times that there are a lot of doctors not aware of this disease and, especially since it affects each person differently, it's even harder to diagnose. So we wanted to share with you some of our listeners and those in our support groups' stories, their stories, so you can arm yourself when you head to the doctor.

Speaker 2:

Yeah, and if you're given a diagnosis of something and after you do your research on it, it just doesn't sit well with you or doesn't seem to fit your symptoms or is clearly an insult, like saying you're an alcoholic, like I was told when I didn't even drink. Y'all need to be that squeaky wheel and not worry about hurting anyone's feelings and get a second or third or fourth opinion if needed. So let us share experiences others have had seeking a diagnosis.

Speaker 1:

Yeah, I think we were taught when we were younger to respect our elders and I think we have that about doctors, so we don't want to second guess them, but with this disease it needs to be done. So hopefully you can take notes or listen back and write down the things that you can relate to that you see in yourself or your loved one and be prepared when you go to the doctor. And because we had a gal, marsha, who was in our group and she listened and wrote down all the symptoms and just by attending the support groups everybody helped her what to share with the doctor and literally I believe she got. Her husband was diagnosed that day with Louie because she came with notes and you know she came prepared to back it up. So why don't you jump with the question?

Speaker 2:

Yeah, this was the question that started a great discussion and sharing. I'm curious how many of your loved ones were misdiagnosed before getting the actual diagnosis of Lewy body. I know that we won't get the true diagnosis.

Speaker 1:

Yeah, until after.

Speaker 2:

Yeah, until later.

Speaker 1:

Yeah, well, until they pass. I think that's what that person was saying, because we're still waiting for that test. That totally confirms it. So, listen as we share some experience of many seeking a diagnosis and please take notes so you can arm yourself when you go to the doctor. I can't say that enough.

Speaker 2:

Here are some of the experiences people have had and or misdiagnosis they received. One of them was misdiagnosed with narcolepsy initially. Testing proved otherwise. Another was misdiagnosed as anxiety and depression and told to see a psychiatrist immediately to 2001,. Little known about Louie, that's right. And until 2001, very little was known about Louie Boddy and then first thought it was related to atypical Parkinson's. He did not have all the symptoms. 14 years misdiagnosis, she says that's a lot.

Speaker 1:

That's a long time?

Speaker 2:

Yeah, it is.

Speaker 1:

And you will read and hear that Louie Bod body dementia is the most misdiagnosed dementia because it looks like several other disease and doctors aren't as educated on it. I believe they are getting there. I have to believe that those going through the training right now will get better at it. Typically it takes 18 months and three doctors. That's the average we've been hearing just from talking to everybody. So I feel that if you or your loved one is given a diagnosis of mild cognitive impairment, do not just accept that. I think everybody was given that in the beginning mostly everybody, because Jim was given that.

Speaker 1:

Ask for a second or even third opinion from providers in a different healthcare system if you have to. We try to preach that there are meds that can help the symptoms. You know can't cure it or I don't know, maybe they slow them down, but there are medicines that will help the symptoms. So the sooner you get diagnosed they slow them down, but there are medicines that will help the symptoms. So the sooner you get diagnosed, the sooner you get the medicines and the better life you'll have. So here are some more experiences.

Speaker 1:

Others had trying to get a diagnosis. They were told it's just Parkinson's or maybe Alzheimer's. But funny, they also have physical symptoms. I also say say do your research and be assertive so that someone just saying it's just parkinson's or maybe alzheimer's that's run away from that doctor. And then someone said back in 2001 my husband was diagnosed with bipolar depression as other signs developed and many neurologic, neurologic neurologists got involved. They said it was atypical Parkinson's because it didn't have all the symptoms of Parkinson's, only a change in gait.

Speaker 1:

We went to the doctor after specialists declined them, I guess for years and years, more and more tests always blamed depression, 14 years of misdiagnosis only to be told near the end that it's probably LBD. She wrote difficult, frustrating journey to the end. I can't even imagine. That's why we said be that squeaky wheel and don't worry about hurting anybody's feelings. Once a dad was diagnosed as vascular and we didn't get a correct one until a year and a half before he passed. Every time he had hallucinations the hospital doctors kept saying must be a mix of two or more meds reacting. Don't you want to just strangle anybody who says that to people.

Speaker 2:

Yeah, we hear all of you when you get told a diagnosis that you know is wrong. In my case, one hospital I went to told me that they diagnosed me with COPD strictly on the fact that I was a smoker. They didn't address my hallucinations or anything that I was having and that's what I went to the hospital for. But they diagnosed me with COPD.

Speaker 2:

My wife and I came home and researched COPD and I had none of the symptoms the major symptoms and that eventually was proven false when I went to a pulmonologist and he tested me for COPD and a bunch of other things. Amazingly, I've smoked now since I was 14 and my lungs are in great shape, as is my heart. Another one after that, because of my hallucinations, said I was an alcoholic and alcohol was a problem and at that time I hadn't drank in like 30 years. You know, hadn't even had a drink. So you know, they just assumed that I was lying about not drinking and assumed I was going through DTs or withdrawal.

Speaker 2:

But here are a few more experiences those seeking a diagnosis have had. This one says two neurologists misdiagnosed my dad with Alzheimer's and the second argued with me when I suspected Lewy body dementia. She said he didn't walk like a Lewy body patient, he had every symptom. Surprisingly, a third neurologist at the VA hospital ordered him some testing, including a DAT scan, and was able to clearly diagnose Lewy body dementia. The second neurologist seemed surprised but wouldn't admit she was wrong when I confronted her. We still had problems. When he went into a nursing facility their doctor was convinced he had schizophrenia despite the diagnosis, so we had to pull him out. We hear all the time doctors want to treat. Yeah, go ahead.

Speaker 1:

Sorry, before you do that, I thank goodness for that person who had a caregiver that did that, because it sounds like she was strong and she was not going to. She did her research. Yeah, that's why I just wanted to jump in.

Speaker 2:

Yeah, and it's very rare for someone to develop schizophrenia this late at an advanced age.

Speaker 1:

Now again, we are not giving medical advice, nor are we. Well, one of us is a doctor, but not a medical doctor. We just play one on the podcast. No, but it's yeah, and that's a lot of people. That's one of the things we hear a lot about. If they think they have, they're having a psychotic breakdown or something with the hallucinations. So yeah, sorry, I didn't mean to interrupt you, but I just wanted to say kudos, I thought it was my internet.

Speaker 2:

No, you're good, I thought it was my internet.

Speaker 1:

No, you're good.

Speaker 2:

I thought it was my internet connection, but it's yours. You're freezing up.

Speaker 1:

Oh, okay, yeah, All right, thanks for telling me.

Speaker 2:

You've done it several times, all right.

Speaker 1:

Hopefully I'm not making a face when, I freeze.

Speaker 2:

You are kind of like that commercial on TV when she's looking at her sister's baby.

Speaker 1:

Yeah, all right. I'll try to not make faces.

Speaker 2:

We hear all the time doctors want to treat bluey body people with the psychotic meds that could make things much worse. So it's up to all of us to educate the medical professionals about this disease. Share what you know about Louie with every medical person you encounter, even if it is your own doctor or nurse and you care for a loved one with Louie. We need to become our own advocates and advocates for others. Speak up and share as much as you can with as many people as you encounter about this disease.

Speaker 1:

Yeah, I agree, people as you encounter about this disease, yeah, I agree. And before I share the final experiences that we heard, um, I know, when I took jim to his uh, art doctor because he was having those palpitations or extra beats or something I I took two booklets of for louis body and on the way out he's, he didn't look at him. He sat him on his desk and then on the way out he didn't look at them. He sat them on his desk and then on the way out he said, oh, do you want these? And I'm like no, I just wanted to be like no, I tried to be calm, I said no, that's for you to educate yourself more on Jim's disease. But the fact that he wanted to give them back to me spoke volumes. Yeah, yeah, it just made me mad. But anyway, here are a few final experiences to share.

Speaker 1:

Someone said not sure you would call it misdiagnosed. In her father's case, the doctors thought he had dementia, but we are trying to deal with all these other aspects as not part of dementia. It took years before the doctor tied it all to Louie and someone said yes, my husband was diagnosed and told it was mild cognitive impairment, as there was nothing mild about it. I pushed for more tests and took another three years I think that's kind of the timeline. Jim was diagnosed with mild cognitive impairment. Three years later it changed. So my loved one was diagnosed with Parkinson's by his cardiologist. So there's a cardiologist that I don't like. The doctor I find the doctors just. They have those blinders on, they're just I'm here to treat your heart, I only want to talk about your heart and then that's yeah, that's got to change. So our PCP was clueless as we spent several years trying to figure out what was going on. And then so I movement disorder specialist in Gainesville months later that was diagnosed.

Speaker 1:

I've heard that a lot they gave her like for you, like your primary care physician or movement specialists seem to be able to pick up Louie better and Parkinson's. Someone said Parkinson's first Louie body, second Louie body, dementia with Parkinson's last. The second doctor was the best, but the office staff and location was horrible. Yeah, I don't know, I guess it's. Yeah, you can deal with that if you have somebody that actually understands the disease. And then the final one I have is someone said they've been fighting for three or four years, telling them that in 10 years his Parkinson's has not progressed, but his cognition was getting worse. The nerves and in this case the PCPs would just blow it off. And then he had multiple car mishaps and finally, when he accidentally fired his gun into our bed, they started listening, so wow.

Speaker 2:

Yeah, exactly.

Speaker 1:

Yeah, wow. So please share. Even share the podcast with doctors. You know that they could listen to this one and just hear these stories.

Speaker 2:

Yeah, and here's an experience that sums up why we felt strong about sharing all of this today. This person starts out. Mine was diagnosed with depression in 2016. A few years later, and many more symptoms, I asked for a second opinion within the same group. They denied it, so off we went to another neurologist who sent us for neuropsychological testing. Told us alcohol induced dementia. Stopped drinking alcohol but symptoms kept getting worse, worse fast, so took him in again and gave a letter to the nurse to give to the doctor to review before he saw us. Doc came in and said, based on everything I documented in the letter, he was suspicious that it was Lewy body dementia. Results came back strongly in favor of Lewy body dementia.

Speaker 1:

Yep, just like our friend Marsha, like do your research, write it down, get it to the doctor. That seems to help. Yes, you may have to do either you, the person trying to get the diagnosis, or the loved one. You may have to do more legwork than the doctors, but getting that quicker diagnosis and getting the proper meds really makes a difference. And I guess I lied because I have one final more to read.

Speaker 1:

My loved one was diagnosed accurately about. Oh yeah, I said that I was surprised to read this one, but I was also hopeful. That's why I wanted to share this last one. So I was surprised and hopeful for this one. So my loved one was diagnosed accurately about four years before he died. Up to that point he had three misdiagnoses. I don't know if that's a right word. I'm just reading what someone wrote.

Speaker 1:

In an effort to help advance the understanding of LBD, my loved one agreed to have his neurologist use the data she collected on him, along with many other patients, for a comprehensive research study. So kudos to that doctor Because he was diagnosed while he was alive. The cause of death on his certificate is LBD, which that's the first time I've heard that that that happened. It's rare to have this on a death certificate. It seems like a small thing to people outside of the LBD community but helps to bring home the understanding that LBD is not curable at this time. So you know he did get a diagnosis and you know that whole story. I wanted to end with that with me is because it did give me hope that you know.

Speaker 2:

Sadly Robin Williams died, but I think more awareness is being brought to everyone, many spouses, after a loved one has passed, and it's very important for them to get the death certificate to read that one of the causes of death was Lewy body dementia. Without that, lewy body dementia does not get research funds. So it's very important to fight that, and we're I know a lady who's going through it right now matter of fact and uh, but it's, it's. It's really important to get that put on as a contributing factor to death. Uh, because where else are they going to get numbers of how many people are killed each year with Lewy body dementia?

Speaker 1:

That's a good point.

Speaker 2:

We hope sharing these experiences will help those seeking a diagnosis know they're not alone and that there is help out there. Like Linda podcast Linda said, you or your loved one just may have to do most of the legwork but, as I always say, there are meds to treat the symptoms. Yes, you will have ups and downs, like I am experiencing now, but there's still a lot of good life left after diagnosis. And well, I had a thought. Yeah, I always tell people you know a lot of people are scared. I don't want my loved one taking meds because of the side effects. Well, you have to weigh the risk against the benefits. You know, if they're having hallucinations that are scaring them, or delusions that are where they're accusing you of cheating on them or stealing stuff, it's a lot better because really, the risk of side effects is pretty slim most of the time.

Speaker 1:

Yeah.

Speaker 2:

So it's, I feel me personally, I would rather risk not getting the side effects and getting the benefits out of the meds.

Speaker 1:

Yeah, yeah, and I'm just telling you, if you read any of the little flyers inside of your medicine, you know that come with your medicines. You pick up any medicine. It's I just you'd be scared to never take medicine.

Speaker 2:

Yeah, and so many people are because of that, and it's, you know, come on, medicine's good.

Speaker 1:

Yeah, and the thing is you may try like we've talked about it before you may try one medicine that doesn't help you or your loved one, and that doesn't mean there's not another one that you can try, because Lord knows I've. You know, jim has been on several different ones to you know, because it's such a unique disease that no two people are like with this disease. Again, we're not giving medical advice, we're just giving our experiences, and for Curry it's clearly one, from what you just said, that you'd rather take the medicines than have those hallucinations, and your medicine really helped put your hallucinations to bed pretty much.

Speaker 2:

It did.

Speaker 1:

Alright. Well, that's my two cents. Just remember, just be your own advocate and come prepared with notes with the doctor. That's really going to help.

Speaker 2:

Keep a journal. That's the most important thing. Yeah, okay, folks, that's all we have time for this week, remember? You can email us with suggestions on what you would like us to discuss on a future episode, or you can ask any questions you have, and we will sure do our best to help get you the best answer possible.

Speaker 1:

Yep, and always remember that we post the link to the. We try, I'm going to put, try, I'm going to change that right now. We try to post the link to the podcast in both the Lewy Body Roller Coaster Podcast Facebook page and on Curry's Our Journey with Lewy Body pages. And if you're interested in helping as a volunteer or an advocate, please send us an email at louiebodyrollercoaster at gmailcom, because the more people who reach out, the more people we can help.

Speaker 2:

And if you want to learn how you can be a supporter of the podcast, please see the episode notes and post that information on there. Okay, folks, thanks again for joining us.

Speaker 1:

Until next week.

Speaker 2:

this is Linda and Curry signing off.