Lewy Body Roller Coaster

Roe's Journey: Living with Lewy Body Dementia and Sleep Disorders Part 2

Season 5 Episode 22

Ever wondered about the connection between sleep disorders and neurodegenerative diseases? Roe shares her experience with obstructive sleep apnea and REM Sleep Behavior Disorder, discovered during an overnight sleep study at the University of Cincinnati. Despite initial reluctance to use a CPAP machine, she faced the alarming reality that a significant percentage of RBD patients may develop neurodegenerative diseases within a decade. Through personal anecdotes and extensive testing, Roe's journey to a Lewy Body Dementia diagnosis unfolds, emphasizing the critical nature of early diagnosis and treatment.
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Speaker 2:

okay, welcome back to part two with ro right, as we were ending last week's episode, hurried s road to share with us, yeah ro, you mentioned to us that you're very early in your diagnosis, but you want to be proactive While this may be hard for some to hear and do right now, share with our listeners, if you would, what you shared with us regarding getting your affairs in orders end of life terms. What did or are you planning to do?

Speaker 3:

Stuff like that. Yeah, so early on, when I was told to get my affairs in order, I immediately contacted our family lawyer and he got us in touch with an elder care attorney, which was awesome time to do this. And what I found was, the more I dove into what I need to accomplish right, the more peace of mind I had. And so it was a real hard balance between I feel like I want to get this done and my husband saying we got time, wait, don't rush through it, You're driving yourself crazy trying to get it done. And, quite frankly, we had to come up with a compromise. We said let's agree to get it done by the end of the year. Okay, and that was our compromise. And guess what? Two weeks ago, we signed all the papers, the living will, the trust, the advanced directives that I needed to change all of that stuff, boom, all done. So there's actually two things that I'm working. Does that answer your question?

Speaker 1:

Linda, yeah, and it's rare, for Carrie, you can weigh in on this. We don't hear a lot of people that say, yes, they say get your affairs in order, but how many really do it? Because, again, yes, they say get your affairs in order, but how many really do it? Because, again, you're early in it and it is an uncomfortable topic, you know, like getting your affairs in order, what you want done when you pass, and I always try to say just do it for the both of you, so it's not like we're planning your death, you're. You know you're planning each other's death, so it won't be be, as I don't know what the word I'm looking for.

Speaker 3:

You know we're planning rose death and not her husband's situation, so it's good to plan both it could be such a burden on the people we leave behind and I want to avoid that at all costs. And there's a sense of I hope I'm using the right word there's a sense of empowerment to be able to have a say in what I want to happen towards the end of my life. And I'm not even talking about as I really get to the end. I'm talking when I can no longer recognize loved ones, when I can't communicate effectively, when I can't dress and take care of myself. Those are serious things that I needed to consider. I needed to be able to hold them up to the light and really look at how do I want to handle that? I don't want to be in denial about those things. I know for a fact. I don't want to burden my adult children. I know that taking care of my mom for eight years, I loved her dearly, but I wouldn't want anyone to have to care for me. So that's really one of my priorities in trying to get that done.

Speaker 3:

Gus and I have had the conversation about when things really get hard. Would we relocate so we're closer to family on the East Coast, to be around my siblings or around my daughter? So that's something we've been talking about Hopefully that's a ways off. Been talking about Hopefully that's a ways off, I wanted to look at being able to contribute to research for Lewy body, being able to donate my brain. Can I possibly contribute a small little piece so that maybe someday they will find a cure, they will find a medication that can get things you know in order for those of us dealing with it.

Speaker 1:

I believe they will. It's just, you know, not in our lifetime. But you know, jim wanted his brain donated too, and because really that's the definitive test, all these other tests like the lumbar puncture and the skin the SYN1 skin biopsy.

Speaker 1:

It's all like pieces of the puzzle. To try to piece of the puzzle with symptoms to say, okay, we think this is Lewy body and I know as a caregiver it was very hard for me to bring this up and I just think it should be now, like when you're married or even if you're not married, come 30, you should have all that done. You know when you're early enough and you know you're going to be living for a while. But just get it done then and you don't have to worry, especially if you have kids and things. But I just thought of that wish, that we would have done that.

Speaker 1:

But I know it was hard for me and Jim to discuss it, especially the end of life wishes when he was just diagnosed, because he's trying to comprehend that and he was still working and functioning mentally. So for me it was like, yeah, I get, we have to do that, but he needed to process. Especially he was inaccurately diagnosed for a little bit and Kari knows I've been trying to work on creating this end of life packet, coming up with some title like so you've been diagnosed with LBD. Now what you know what I mean. So, like you sharing and Curry and all of our guests and our Facebook members really help those on the journey behind us, and especially the recently diagnosed. Because you had said you didn't not sure if you should come on because you're recently diagnosed, we're like, no, that's, you're the perfect time to come on because you're going through. I don't think we've had anybody early, early diagnosed like this one before.

Speaker 3:

But so I think it opens up the conversation and I'll tell you something I learned in the last month or so. I was planning on donating my body, filled out all the paperwork for UC. They won't take the body and the brain, so the brain's going somewhere else. And I had this heart-to-heart conversation with my husband and with my older sister and the feedback I got was if UC holds onto the body and after two years or three years they cremate and then they return the ashes to the family, where's the closure? Are you going to make your kids and grandkids wait two or three years to have some kind of closure when you're gone? It's going to be heavy enough to lose you. Do you want to have that added burden?

Speaker 3:

So, even though my heart was in the right place, it made me rethink and not be so set in. Yeah, that's what I want to do, you know. So we're tossing around the idea of a green burial. Are you familiar with the green burial? It's an idea that really appeals to me, you know to have, you know, ashes spread in a beautiful meadow the other side of Cincinnati, and I don't even need a stone, I just know. You know my kids want to come and meditate somewhere. They know, they know, you know, but I feel like I'm.

Speaker 3:

Yeah, I'll skip that, but we also had a long-term care policy that we purchased a couple years ago, just as a precaution before the diagnosis, and I needed to know, if I consider end-of-life assistance, will the policy still be in effect If I end my life because of a terminal illness, is that policy going to be in effect? And so we had to turn over every stone and look at what that would mean, and so there's been a lot to take care of in that area.

Speaker 1:

Yeah, and doing it so soon after you get this diagnosis. It's not easy, that's for sure. And if you're able to share, I know you mentioned a little bit of how your husband's been handling your diagnosis, so do you want to share a little bit by how he is handling it all? It's okay if you can't and you don't want to, that's that's fine too.

Speaker 3:

I'm I'm happy to share and I have to respect where he's at right. We have to respect where our spouses are at. Um, we uh, gus and I were offered an opportunity to attend a support group. We were told it was going to be a Lewy Body support group at UC for people recently diagnosed and it was an eight-week group and Gus was very open to going. I want to learn about this. I want to support you.

Speaker 3:

I'll go every Friday for eight weeks and we showed up and, quite frankly, we were the only people dealing with Lewy body. Everybody in the room was Alzheimer's. But I have to say that just attending those two hour meetings once a week it opened up opportunities for us to talk about the safety in our home or my driving or cognitive decline, or do we tell relatives and friends or how do we handle this. So it did provide an opportunity and I was so thankful. I never missed an opportunity to tell him how thankful I was that he was willing to go along. I'm guessing there might be some spouses that are really reluctant to go.

Speaker 1:

It's just a guess I don't know. You know you're, you're trying to. He is too trying to comprehend and digest this diagnosis. So it's yeah, so everybody's grieving in their own way, but for different reasons.

Speaker 3:

As you go through this, yep and l Linda, I'm trying to think what was just on my mind there as far as him dealing. Oh yes, we also started seeing a therapist, so we've only had two sessions, but she's really amazing. We've never gone to therapy. We've never gone to therapy. So to find someone that was going to help us specifically begin to adjust and acclimate to this new way of living, right, this new lifestyle, this new diagnosis, it's been really beneficial to both of us. And one of the things I've learned from this therapist was I, the patient, I need to learn how to support my husband so that he can support me. And it's an interesting little.

Speaker 3:

I've heard this beautiful analogy. It's like you hear couples want to be like 50-50. Everything should be 50-50. You give, he gives, right. No, that's bullshit, excuse my language, that's bullshit. Sometimes I'm at 20 and he's at 80. Sometimes he's at 10 and I'm at 90, right? So we got to weigh in and see where each other, where each of us, are at. I'll be quite frank with you.

Speaker 3:

The two of us sat down and watched Facing the Wind, that beautiful movie, just last Friday night, and it was heavy, especially from the care partner's perspective, right? And so that was Friday night and we had this awesome weekend planned. We were going out of town overnight, big dinner and just the two of us. And I said to him after the movie he couldn't even talk about it. And I said to him let's do this, we know it's there, we know we watched it together and we're both processing it. Let's take that and put it up on the shelf and we'll know it's there and we're ready to address it. We'll have that conversation, but right now let's put it on the shelf, let's go up to Columbus and see John Stewart. We're going to have a really nice time tomorrow night. And that's how we dealt with it.

Speaker 1:

Sometimes it's okay to know that it's there and that you, you know you're going to Get to it when you can Cross that bridge and for those who don't know, curry and I were a part of making a documentary about Lewy body dementia from the patient's perspective and caregivers, called Facing the Wind. I know it was available for a little bit of time after the New York film festival. By the time this episode airs, that'll be passed, but we will continue to update everyone on how they can watch it. I'm not really sure what happens now that it's been through the film festival in New York, so her and I are just along for the ride right now. I haven't. I haven't been able to watch it.

Speaker 1:

I had two of my best friends watch it twice and give me the like cliff notes, because I was in New York for the premiere and there was like a question session afterwards and I know that the film people wanted me to. They're like you really need to watch it, you really need to watch it, and I'm like if you want me to answer questions afterwards, I can't watch it. So, cause that's just where I am with it and I lived. I said I lived it. There's nothing they're going to be able to. They're going to ask me that I'm not going to be able to answer. So some answer. So we did post that. It was available the week. I guess it was right before Thanksgiving week up to December 1st, right, kerry, I think?

Speaker 3:

It's still streaming today, up until today.

Speaker 1:

We're trying to work behind the scenes and figure out how especially our listeners, or podcast listeners, and our Facebook group people can have access to it. Okay, so anyway, kyrie, you asked the next question.

Speaker 2:

Before I ask my next question Rose, you talked about a green burial and that you wouldn't even need a stone. Let me tell you you would need a stone. My dad, his mama, died when he was just a baby. That was 1934. And back then all they did was put rocks for headstones and my dad showed me where she was buried at, but I've yet been able to find her since he passed away. You know, there's so many out there I can't figure out which rock it is anymore. If she's under a tree and under a rock, please put your headstone there, even if it just says here lie Roe, that way your family members can find her.

Speaker 3:

So, curry, I have a slightly different take. I have a slightly different take on that. My dad passed away 50 years ago and there's a beautiful stone in New Jersey, a beautiful cemetery, and I've lived in Cincinnati most of my life and so I don't feel like I need to be there, like to see the stone, to be there, to feel his presence, to feel that my dad's close by. So I get what you're saying, I respect that, but I think each of us has to decide what's important, right? If I knew that, my kids could go to this garden on the other side of Cincinnati and roam these beautiful gardens and know, hey, moms, to me it's like the spirit continues and that's too esoteric for this podcast right now. I get what you're saying. I think it's important.

Speaker 2:

I'm the only one that he showed where she was buried at. So my sister, my aunt, my uncle none of them know where she's buried at. It was just rough you know yeah.

Speaker 3:

I just wanted to get a heads up on that. And there is something consoling. Even when I visit family in jersey and I go to the you know the grave, you know the grave site, there is something consoling being that you know being there, being in the present, you know in there. So, yes, I get what you're saying okay, you bet you now.

Speaker 2:

Thank you, man. Advocacy for those with the disease. I'm sorry, skip the page. Uh, you mentioned to us that your new symptoms include falling balance issues, cotton mouth, rem incontinence issues you haven't had before, which I know are concerning when they happen. You said you can only discuss these kinds of symptoms with certain people. Can you share a little bit on that?

Speaker 3:

Sure, I'm happy to. So, uh, I find that when I need to discuss something heavy like the body donation or something like that, um, end of life assistance, uh, I have to. I am lucky in the sense that I have several people that I can go to, but I feel like I need to give them a heads up. Hey, at some point can we put aside some time to talk about? I do it with my husband, I do with my sisters, I do it with my closest girlfriends, and this way I'm not just hitting them with this heavy topic. So I think that's a really big. It's been a very big help for me to plan it, to plan to have that conversation.

Speaker 3:

I do have two girlfriends that are much older than me. They're in their late 70s, girlfriends that are much older than me. They're in their late 70s, and we've been meeting once a month for three months to talk about what happens after death, what are your beliefs, what are your feelings, and that's been such a gift to me to have that opportunity to talk about any fears that might come up or um, it's actually given me a lot of peace of mind. So I've made we've kind of created that for ourselves Good deal. Is that what you were asking, curry? Yes, ma'am.

Speaker 1:

Talk about you now if you can share with our listeners how you're coping, like how you're coping mentally and emotionally, because I know you shared with us something you've been doing that has helped and I was like, okay, I got to get her to share about that because, as a caregiver losing someone, I've been told to also do this. So what is it that you've been doing that try to help you with everything mentally and emotionally?

Speaker 3:

yeah, so I have. So I have rediscovered the gift of journaling, like really and truly writing down what's going on inside me, what's the interior looking like. I use journaling in a number of ways. I even signed up for an eight-week class to write. But I have an ongoing document on my laptop just changes I've observed in my body, in my brain, and so every couple of days I'm adding to it the cotton mouth, the incontinence, whatever. That's one part of my journaling and it helps me keep track of what's happening physically, what's happening mentally, where I'm at with some of my conversations.

Speaker 3:

I wanted to talk to so-and-so about the green burial right, that's a really good place for me to. It's like a little file for my brain. Does that make sense? Yeah, yeah, yeah, it's like a little file for my brain. Does that make sense? Yeah, yeah, yeah. But then there's also the part of journaling which is such a gift, and I was always a journaler Years ago. I've got a stack full of journals. I probably need to toss them, but it's so wonderful to kind of dip back to that part of my life and rediscover that sometimes that's the only way to get in touch with, I think, for myself, I tend to get involved in activity and I miss the opportunity to see how I'm feeling or what things are important to me, what are my priorities, and journaling helps me to get in touch with that when you shared that, I'm like that's powerful, because then when for anybody, and then when you're gone, people can go back and hear about your thoughts and what you were feeling and things like that.

Speaker 1:

So I think that's great, especially with keeping track of things, because Curry knows that Jim used to have a little purple book it's the kind we gave out at the Caney event and every week I'd put the date of when he went to the support meetings and he would write everybody's names and my little thing about them. Yeah, so journaling, it know it can really help. And you also share with us how you want to write your memoir and we've heard of others with Lewy Lewy Body Dementia also doing similar things for their kids and their grandkids, like our friend Carl from upstate is doing that for his grandson who I think he's three or four. What do you want to specifically be in your memoir that would help others seeking a diagnosis?

Speaker 3:

So you mentioned writing for the sake of your kids, your grandkids. It's going to sound a little selfish, linda, but I'm writing this for myself. I need to do this for myself. I truly do. And when I'm gone, if the kids want to pick it up, that's great, it's there right.

Speaker 3:

But quite frankly, I've had an amazing life I want to write about when I became a priestess, when I officiated my friend's wedding, when I did volunteer work for Women, helping Women, when I volunteered with hospice. These are amazing experiences that I had that changed my life for the good and I need to document that for me. In the process, like I said, when I signed up for the writing class, I discovered that it's very powerful to write down our memories and then share them with family members. So I've had a blast the last eight to 10 weeks writing about memories growing up in New York City and sharing them with my siblings. I had the opportunity to read one of them to my grandson last week. He's like you did all that, grammy, he would have just lived his life never knowing some of this stuff. Now, some stuff I don't want to tell them.

Speaker 1:

I was just thinking that about Curry. I'm like I don't know if he should be writing down everything. Those are the chapters that you edit, but I'm thinking like, as those with louis body get further on, where you start not remembering that someone could read them to you, if you, if you, you know, can't comprehend that's such a great idea hurry. You need to start because I want to know what happened. You were 14, 15.

Speaker 3:

The other thing I do. I've made use of the recording app on my phone, so if I'm too tired to sit in front of the laptop, I'm going to sit there for 20 minutes to a half hour thinking about what was it like when I was a broker with the stock exchange. That was exciting times. For eight years I sold stocks and mutual funds. I want to remember those things right.

Speaker 1:

I thought you were going to say you stole stocks.

Speaker 3:

Stole no, no, no, somebody else has that job no.

Speaker 1:

But I think that's great. That's why, when you mentioned it when we were talking the other day, I'm like you know she's got to share about these journal writings because I've actually just ordered a whole bunch of things to start journaling because other widows that I'm in groups with do it and they're like it's, you know it's very helpful get it all out, and so I appreciate you know you you sharing about all that. That's something we haven't heard anybody share until this this time.

Speaker 3:

It's life giving as you can tell you.

Speaker 1:

You you're doing it you're doing it as well. So, carrie, now you can ask advocacy. You're doing it as well. So, carrie, now you can ask advocacy.

Speaker 2:

All right, ro. Advocacy for those with the disease needs to start with those of us who have Lewy body dementia and our caregivers. This is why podcast Linda and I connected to start a second Facebook page from the one I first started for my family called Our Journey with Lewy Body Dementia, and me giving the crazy lady I mean podcast Linda my telephone number. Almost four years ago put us on one of the most challenging yet rewarding advocacy paths that neither of us could have ever have imagined. Ro, how will you continue to advocate for yourself and for others? First question. And then you mentioned journ yourself and for others First question, and then you mentioned journaling and starting to write your memoir. Share with us your ideas on how others and yourself can continue being advocates for those with Lewy body dementia and their families. I know that's a long question.

Speaker 3:

That's a long question. You might have to remind me of that part too, he could have took out the part where he called me crazy.

Speaker 2:

I'm just saying that was halfway there.

Speaker 3:

So, curry, to answer your question, I'm working on a couple things right now. I just started putting some ideas together. This is just a vision that I have for the future, but I am working on it. I would love to see a book that features not only a little bit about my story, but I want to see if we could feature maybe two dozen, three dozen people's story about their Lewy body journey. I don't know if that exists right now.

Speaker 3:

I'm working with two of my friends that are authors and they're helping me develop a template with questions and things like that, almost like an interview thing. But I also want the recipient, the person sharing their story, to feel comfortable. You know the level of sharing that they want to do. So that's number one. I see that as like a more long-term project that I want to dedicate some time to. I also and sometimes I feel a little resentful, but I notice Alzheimer's gets an awful lot of attention and I want to be up there. I want to be a brain advocate. I want to be like the poster child for Lewy Body. This is what Lewy Body looks like, right, and so I'm working on getting pamphlets and information for the neurologist's office. I'm educating the social workers that are in his office and that's kind of ongoing. I did share with them this podcast and the Facebook pages. I know they're private, but I wanted them to know these exist for your patients, because they had no idea.

Speaker 1:

We would let doctors into the group for sure if they said they were neurologists and family physicians wanting to hear from maybe as a guest sometime?

Speaker 3:

have you done that?

Speaker 1:

already on the podcast? Yes, but I mean in the support groups, you know. Oh for sure.

Speaker 3:

Oh, that would be awesome. Yeah, that would be awesome. I love that idea. Any way that we can look at to educate more people, to raise that awareness right, it's all got to be helpful. Another thing I noticed that I would I don't know how I can benefit or change it, but I've noticed that some of the resources feel like they're siloed to me, Like you've got the Lewy Body Dementia Association, then you've got the Lewy Body Resource Center and you've got the Roller Coaster Project and there's a lot of resources and some of them overlap but it's almost overwhelming. So I got to figure out in my head which ones are beneficial to me. I don't know if you're familiar with something called Dementia Action Alliance. They do weekly and monthly groups and I've kind of dipped into that.

Speaker 1:

We've had someone from there on the podcast in the very beginning.

Speaker 3:

And then Brian's Buddies. Have you heard of Brian's Buddies? It was Brian's Buddy, I think. Brian was a Lewy body patient and as he progressed in the disease the wife noticed his friends kind of fell off. They just fell off right. So she set up Brian's buddies to make sure that he always had someone to communicate with, whether it be once every other week or something like that. So I attended one meeting. Again, I don't know if it's for me or not, but I feel like it's my role to turn over these stones and look at them and say, hey, is this you know? Because if I don't try it out, how will I know?

Speaker 1:

See what fits and this perfectly walks you. It's like we set it up into what I want to ask you next, because, especially the Thursday Zoom meetings that we have, it's called Louie Buddies. You know and belong, because you mentioned talking about the support groups before and belonging to the groups, because I can tell you, if you're out there listening and you haven't jumped on, we have people from other countries that attend. Monday and Fridays is for anybody seeking a diagnosis, someone who has Louie or their caregiver. Thursday afternoons is just for people with Louie or their diagnosis and your spouse or someone in your family could come with you the first time to help you. You know, get acclimated and get it started, and I would. I would get it going for gym and then I would leave the room.

Speaker 1:

But it's, I can tell you, and we've mentioned this before, if somebody doesn't come to a couple meetings, somebody in the group is going to reach out to them. So there's like so many Louie, we call them Louie buddies because that's kind of on the line what you were saying. But my last question before we wrap this up, ro, is you want to share with our listeners what it's meant to you to find our Zoom support groups and Curry will say it's our new Louie family. And what advice would you give others thinking they wouldn't belong? But find out you really do belong, no matter where you are in your diagnosis or progression. Sure.

Speaker 3:

So I have to tell you, linda, I first discovered Louie Body Roller Coaster podcast before I started attending the support groups, and the reason was it worked out for me to listen to the podcast when I was walking the 20 minutes to work and the times that the meetings were kind of conflicted with my part-time job. So I didn't. I loved the podcast and I learned a lot. I learned a heck of a lot early on, but then when I stopped working in September, I was able to attend my first meeting and the first meeting or two was hard because there were some people really struggling. The first meeting or two was hard because there were some people really struggling, but the feeling I was left with was these people get me. They understand where I'm at.

Speaker 1:

They really do. Can I ask did you attend the Thursday groups first the one just I did?

Speaker 3:

So that was the easiest for me because we were going to the other support group. It just conflicted. But I feel like everyone there's not one person I would exclude. Everyone on that support group meeting gives 100%. There's so much respect for one another on each person, where they're at on their journey, right, there's a check-in. If somebody's not been there for a week or two, I hear Curry say hey friend, how you doing? It's been a while. There's a feeling of genuine care and concern. That's what I get from the weekly meetings and, quite frankly, that's what's sustaining me right now. I kind of live for those meetings and I'll tell you a quick little story.

Speaker 3:

A couple of weeks ago we were getting ready to wrap up. It was like 15 minutes till the meeting ended and my husband was starting dinner in the background and I said to the group excuse me, I'm going to jump off because I'll help them get dinner. I know you got 10 or 15 minutes. I'm like, okay, love you Ro, I'm like you love me. And it just melted my heart like these. And then, even behind the scenes, to hear that someone in the group maybe was extra depressed. And then we exchanged emails and I sent her an email. She was so thrilled to get that email. Like there's relationships being formed beyond the group. The group is where it starts. But like I'm involved in a women's study what do they call the study group with biophentamine or something like that and I found out because I was in the group, like I would have never known to take this B vitamin.

Speaker 2:

I'm taking that also. I just started it.

Speaker 3:

You are, they let you in. Are you part of the women's study Curry?

Speaker 2:

Kind of.

Speaker 1:

I'm not even going to go there with that, but I will say it's.

Speaker 2:

Dr Sarah asked me if I'd try it.

Speaker 1:

Oh, that's great.

Speaker 1:

Love it, but it really does become your second family of people who get get you and like caregiver to caregiver, we speak the same language. Person with the disease. You know the Thursday groups are very powerful. Um, yeah, and Nami, our friend that attends from Ireland, always says that she calls it Louis. Love the days that you think you don't, you don't have it in you to attend, or the days you really need to attend because somebody is going to like lift you up and I always say we come in laughing, we get the. You know, sometimes we're serious, sometimes we don't even. You know there's days maybe Louis mentioned a little bit, but we all get invested in each other's lives. So I kind of always want to plug the support meetings just because they've meant so much to me also. So I appreciate you sharing that. So, before we go, because I know we're getting long for our part two, I know this episode is going to resonate with many and help many as well. So do you have any final words of wisdom or encouraging words for the listeners, ro?

Speaker 3:

I do. This is something that came out in my journaling about a week or so ago, linda. I wrote the words accept change gracefully and it's really become a mantra for me. And it's about the changes in my cognition. It's about the physical changes, it's about changes in relationships, because those things are kind of morphing right. We all know that that's going to happen down the road, but accept change gracefully has become my mantra. I'm thinking about getting a tattoo. It's actually between that and my other. Favorite is that gratitude sustains optimism, and to find anything, something small every single day, to be grateful for it really and truly keeps me going from day to day.

Speaker 1:

That's perfect, perfect, I love that. Accept change gracefully.

Speaker 2:

Well, folks, that's all we have time for this week. Ro, we want to thank you again for coming on and sharing your experiences and giving words of encouragement to all of 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.

Speaker 1:

Yeah, and thanks again, Ro, because I know we could have a part three and a part four probably, which not off the table, but for now we're going to say thank you so much for sharing what you've shared today, and now you all know our names, so you can bombard her Facebook Messenger.

Speaker 3:

Thank you for having me, no problem.

Speaker 1:

Please send your suggestions and comments to either our email, louiebodyrollercoaster at gmailcom, or on either Facebook page, the Art Journey with Louie Body Dementia or the Louie Body Roller Coaster Podcast group, and we really can't thank you all for your supporting us, even though we don't get an episode off every week as we would really like to, and thank you for past and present supporters, because it's you all what keep us going, even though life is kicking us every now and then, we're doing our best to just keep plugging away.

Speaker 2:

Yeah, as always, we will continue to post the link for the podcast each week for you in our Facebook group, which is Our Journey with Lewy Body Dementia, and on our Lewy Body Dementia Roller Coaster podcast group, as well as many other groups. So thanks for joining us this week, folks.

Speaker 1:

Until next week. This is Linda.

Speaker 2:

And Curry signing off.