Lewy Body Roller Coaster
Lewy Body Roller Coaster
Navigating Life with Lewy Body Dementia: Carl Ladd's Journey of Vulnerability and Resilience Part 2
Welcome back to the fold, where the tapestry of human experience is rich and complex, especially when joined by individuals like Carl Ladd, an award-winning educator who's bravely navigating through the turbid waters of Lewy Body Dementia. With laughter and vulnerability, Carl peels back the layers of his life to reveal the onset of severe depression and other debilitating symptoms that came with his diagnosis, challenging his once high-energy existence. His story is a stark reminder that success on paper doesn't shield us from the battles within, and it's a journey we're honored to share with you, filled with the truths of walking the tightrope between professional demands and personal health.
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Let's continue our talk and sharing with Carl. You shared on our Facebook pages that you got involved with a dementia group. Can you tell us about that group and what that group is trying to do?
Speaker 2:Yeah, I came across a group called the national council of dementia minds. Uh, it's the only organization, um that I'm aware of that was both founded by and is governed by, uh, folks living with dementia. Uh, there there are folks who have early onset Alzheimer's, vascular dementia, folks with Lewy body dementia. One of the things I was surprised about was the number of folks who have what's called CTE.
Speaker 2:Um, what's called cte, which is, um, I don't ask me what the acronym stands for, but it comes from, uh, traumatic brain injuries, um and uh, you hear about a lot of athletes, professional athletes who who have this, and so it's really just, it's a group of people who are coming together to try to raise awareness about dementia and to erase a little bit of the stigma that comes from the diagnosis and trying to get people to understand that, you know, there's more to us than just the diagnosis of dementia, that we have things to offer and that we can contribute still, that we can contribute still.
Speaker 2:And so I think that the goal of the organization is really to try to raise awareness and educate medical professionals and just the general public about life after the diagnosis of dementia. And it's, you know, it falls in line so much with what you guys have been doing and trying to do around Lewy body dementia and what Norma does with the Resource Center and you know, lbda. But you know, one of the things I like about this organization is that it's just a, it's a broader group, so it's not focused on one type of dementia, because in talking to people you realize that we're all kind of going through a lot of the same symptoms. We do it in different stages and you know, know, there may be different aspects to every dementia, but it, you know, but at the heart of it it's all loss of cognition, and you know, it's just our brain is just failing us yeah, and I, I think you shared with us, um, one of the topics you guys were talking about.
Speaker 1:It might not have been from that meeting, but I had posted something on the Facebook groups a question every now and then I'll post a question just to hear people's responses. Sadly, I know most of the responses are going to be similar, but it's about that. Okay, you have Lewyis body, go see the social worker down the hall. That's what happened to us. Uh, handed us a folder, said get your fears in order, see you in six months, kind of thing. Um, and you, you, I think you shared that somebody just was told you have dementia, get your fears in order, without even telling them what kind of dementia they have. And I think that's something like that group that you're in with the other people with dementia.
Speaker 1:I don't know, I guess it could be just wishful thinking, but I have to. I don't know. I have to believe that what we're all doing, like what you're doing with these groups in your blog and the Facebook pages, and everyone sharing that the medical field is going to hear us somehow, so that the people behind us don't have to go through that. I mean, it was very sad hearing people's responses and because I was like what would you want the doctor have done? You know, I mean, curry didn't even know he was like, what did you?
Speaker 3:you didn't even realize it was louis body you know, when he told me I had louis body, I said I didn't hear him. Well, you know, and I thought, did you say? I asked him. I said did you say lower body? He said no, uh, lewy body. I said, oh okay, still didn't make any sense, but I had never heard of it either.
Speaker 1:Yeah, and I think I'm going to try to compile all those responses and, I don't know, get it to. I don't know, maybe NERMA will post it or just send it to the LBDA. I would love to go speak at a neurologist convention and just share what everybody in our groups share, just to help them better understand. I mean, jim was told he had Alzheimer's and I said thank God because I thought he had Lewy body. Like who says thank God to that? But I don't know, and there's so many of us that the spouse is either diagnosed or the person with it wind up diagnosed before the medical field. But there's got to be a better way, a better know, explain it better. And it's yes, that's, it's something that's going to shorten your life, but you still have life left and I don't think doctors give off that perception to patients when they say you have lewy body dementia and then that was certainly my experience, um, and I really and I really liked my neurologist.
Speaker 2:You know I didn't go through a lot of the misdiagnosis and all of that, the horror stories that I've heard. I was very blessed in that regard. But you know, she essentially told she asked us if we'd ever heard of the term louis body dementia. We said we hadn't. Um, she basically told us it was a neurodegenerative brain disease, that we needed to go home and get our affairs in order and that we should do as much research as we could. And that was essentially it, you know. So everything I learned about it I learned on my own.
Speaker 1:Yeah. So you're telling someone they have a neurodegenerative brain disease and you're telling them to go home and do their own research on the disease. That has to stop. People have been given good suggestions on what they would have liked doctors to have done, so I keep bumping it to the top of the page because I just want as many people that can share their thoughts on that and I feel like I really need to do something with those answers because it's I don't know it makes you the way doctors are doing it. It's like okay, it's like they're giving you the death sentence right there and it doesn't. You still have a lot of good, especially if they catch it early on. You still have a lot of. I mean, jim worked for almost two years after he was diagnosed. Yeah, we got to put our heads together and try to help stop that from happening.
Speaker 3:You know, sometimes I think about how doctors tell us what we need to do go home, get your affairs in order, and stuff like that, uh. And I think sometimes I think, well, maybe they are doing that, uh, and they don't want to, don't? They don't want to say anything good about it in fear of lawsuits or something. I don't know, but for some reason they all seem to say the same things.
Speaker 1:Except our friend. We have a friend in Ireland whose doctor told her go out and have as many holidays you call vacations holidays on that side of the world. Go have as many holidays as you wantations holidays on that side of the world. Go have as many holidays as you want, you know, and that's what she's been doing.
Speaker 1:You know, and, in retrospect, I wish I would have his hit right when COVID hit. So I feel like COVID stole a year and a half that he was still good and we were trapped in a house where we could have done things. I mean, I was teaching from home, which I could have taught from anywhere, but we couldn't go anywhere, you know. So, being on the other side of it, there's a lot of guilt on my part on things I wish I would have done differently, and I feel like I didn't know whether I was going to be able to do another podcast after he passed away. I don't honestly remember anything I said on that podcast. I shared about our experience and I haven't listened to it, but, um, I don't know. I just I just got to the point where I want to share what I wish I would have done. Um, or Jim, in retrospect, um, and I know Carrie always, you know, tries to pump me up and say I did the best I could when it was happening.
Speaker 3:Oh, you did.
Speaker 1:Yeah, it's just I have a lot of regrets, but I don't know. We just have to keep lifting each other up, whether you're just diagnosed or you're in the middle of it, and whether you're a spouse or a caregiver. And that's kind of why we want to do this get-together too, because that's going to be a I said we need tissues there because that's going to be a very emotional day.
Speaker 3:I'm really looking forward to it.
Speaker 1:Yeah, to actually hug the people that you've been talking to online and seeing in Zoom each week. Oh, look at that, I've made a perfect segue for your next questions, perry.
Speaker 3:Yeah, pearl, you attend. Well, you try to attend three of our Zoom groups each week the Monday, thursday and Friday one. Can you share with us your thoughts on attending support meetings?
Speaker 2:You know we get new people joining each week and I've got to say for me it's nice to know I'm not the only one with this disease yeah, I think that, um, you know there's a few different groups that I belong to and I say that I join them for information, but I come to our support groups for support and empathy and compassion.
Speaker 2:I think that the great thing about the groups is, no matter what I'm feeling like when I get in there, usually I feel much better when I'm done, because you know and I will tell people who are new, you know, don't just come once and think that that's going to be the experience, because it takes you have to come a few times to feel comfortable enough to share and comfortable enough hearing people talk about our illness, because I think sometimes we're not always comfortable, um, talking about it, and this group really gives us a chance to talk about the things that we don't talk about sometimes with our friends, um, and I find sometimes that I talk about things that I don't even talk about with my wife, and it just it helps to know that there are other people out there who are struggling with the same things I'm struggling with and that I'm not just going crazy, because I thought that for a long time that I was just losing my mind, and it's good to know that, if I am.
Speaker 1:I'm at least going with another group that's losing theirs too so right, and and if you're considering joining, you can just keep your camera off and not say anything and just listen. And I agree, because every meeting is different. I guess the way Karen and I and we have some people that help us start the meeting, I don't feel like it's our meeting. We just are the people that push the button and let people in. We just let people share what they need to share. And you know we've talked about which I always we have a drinking game in our Zooms. So drinking, not alcohol, but if somebody accidentally says a bad word or curry lifts his pen up to talk, or somebody mentions poop or something like that, people just you see everybody drinking. It's just funny to see. Um, yeah, but it's. I was used to that poop discussion because I taught middle school. Somehow it always came around to that. But it's it, I agree, it's, it's. You can talk about that. And, like carries, I remember that one of the first meetings, um, somebody had said I, I can't hit a male, said I can't hit the bowl when I pee, like I I miss the bowl, like, and it was just a conversation where there were three or four gentlemen in the group and there were women in the group at the same time who were just like, well, this is what I do and this is what I do. And we know Curry goes to the left like Beyonce, so he's handled that, but it is.
Speaker 1:You know, each meeting is totally different. I always say we usually come in laughing at something and then sorry, can you hear my dog? I'm glad you can't hear it and then we start talking about things people need to talk about, and then we have a lot of funny characters in our Monday-Friday group who are very funny people. So it's just, I don't know you. Just I've heard so many times people say you are more family to me than my real family when it regards to Louie. You know, because we're all living it and we get it.
Speaker 1:And I think that's to me that's the most powerful thing about the Zoom meetings is what you just said, Carl, Like you can share about anything that you're experiencing and no one's going to judge you and be like, oh my God, he's talking about poop again. Nobody's doing that. I never even did that with eighth graders. I'm like why are we talking about poop again? I don't know, but it is, and when someone's not there we get. Why did they miss a meeting? They missed two meetings. We're going to be reaching out. Somebody's going to be reaching out. I just feel like so many friendships have formed that when we get to, are you? Are you able to make September? Carl? I don't remember if you said you were.
Speaker 2:I don't think. So I'm really bummed about that. But I think you know I don't drive anymore. I gave up my license right away. My wife's never driven, so you know, for us to travel anywhere, we have to drag one of our daughters with us to drive us places. So you know we haven't done a lot of traveling. I think, um, you know, we're just now getting to the point where I always say that my wife would like to wrap me in bubble wrap, um, because I think you know she's just worried. You know me in bubble wrap, um, because I think you know she's just worried. You know she's worried about me all the time. So I I think we're getting to the point where we might be able to do some traveling, um, and I'm going to try to talk her into maybe um I have an rv.
Speaker 2:I'll send my rv up for you so, you know, I'd really like to be able to go, because I just, you know, just the thought of being able to see the people in person that you, that you talk to every week, um, yeah, I just, I think it's going to be such a powerful event it's, it's just going to be.
Speaker 1:I just got the chills down my back.
Speaker 3:I can't tell you how it makes you feel when you meet someone else in person who's going through the same thing you are. It's a feeling I can't describe.
Speaker 1:Yeah, because Jim was the first Louis person you hugged in person and that was just. I can still see him running up your ramp and hugging you and it was just. That was more powerful than me hugging you, Because I wound up punching you and then you stuck me in a freaking kitchen chicken coop and stole my Reese's, ate my Reese's. I'm not bitter, I'm not bitter. I'm not bitter.
Speaker 3:Neither were your Reese's, I know.
Speaker 1:I had to do that to get me out of that. I had to get myself out of that Anyway, and it's well, and I think a lot of people are still. You know, we've heard people say they're going to come, but I think a lot of people are going to wait, especially with Louie. They're going to wait until that, right around July, like deadline to decide, cause with Louie you don't know. You know what, where you're going to be, what you know what part of the rollercoaster you're going to be on.
Speaker 3:And during that time, you know, that's like my wife, linda, she, we've talked about this, about people waiting, you know, to find out if they can make it, uh, and like she said, she said I, I can't even tell anyone that you're going to be there for sure and that's true, you just don't know yeah, yeah, that's why you're going to take it easy from now until then.
Speaker 1:So now, before we ask Carl to share some final words. Before we started recording, I had asked Curry, because the last episode we recorded was just me and Curry and it was right after you got home from their hospital stay and you were put on hospice, which I don't know. We've done several episodes that it's such to so many people. It's such a scary bad word and I wanted to know if you would share with me and the listeners and Carl Curry, now that you've had hospice with you for over a month now, I think yeah about a month.
Speaker 1:Tell us what you think and tell us how it's going.
Speaker 3:I tell you, when they first mentioned it I wasn't too sure about it, but I was ready for it. There was a period in two or three weeks here that I was just following every time I turned around, but now I know hospice can be such a good thing. I've heard a lot of horror stories about hospice, you know, but my experience with this group of hospice people has been nothing but great. You know. They've been over backwards and it really shows to you that they do care about your patients.
Speaker 1:When you say horror story, do you just mean the fear of the word hospice, thinking it's the end? Now, my situation was for sure a terrible one, which I'm glad to hear that it's a rarity.
Speaker 3:But when you heard hospice, did it scare you or just no, I think it may scare me just a touch, uh, but I think once, once I thought about it for like two minutes I I agreed to it because I felt like I needed it and and linda needed it.
Speaker 1:Your wife l Linda needed it, you know, and if anything, and you and we probably should post that hospice episode again just as a refresher for people to listen to, but they'll call it hospice. But you can graduate to palliative care, but right now you have this bum knee going on and your wife is tiny, linda's like five foot and you're a Reese's chocolate-eaten big guy.
Speaker 3:Yeah, yeah, I tell you what that last fall, when our granddaughter's fiance and Linda, they couldn't get me up off the floor. You know that's when they decided better call an ambulance. Yeah, I knew. Then, you know, something's got to change, because she can't get me up if I fall, you know, and Jesse, as big as he is, he couldn't even do it with the two of them. So they were going to get me up and try to get me into the shower before we went to the hospital and I ended up getting my shower right there in the middle of the living room floor because they couldn't get me up, you know. But no, I've had a real good experience with hospice. You know, I don't have to go to the doctor anymore, which, hey, that's fine with me. You know, I tell them what's going on and they fix it. They either give me another med for it or they try to help me through it. As far as I'm concerned, everyone with Lewy should get on palliative care and first sign a little trouble, get on hospice.
Speaker 1:Because it doesn't mean that the end is near, it just means you need more, more help. And yeah, because so. Besides, are they communicating with your family doctor? Yes okay, so it's, and you're not having to leave your house to go, even though the doctors isn't far. I know that's right. That's, that was a big thing for you like to. Yeah, to have to get into a car and drive anywhere.
Speaker 3:And now I've got the hospice doctor communicates with our PCP and, like you said, I never left that. The only time I used to leave the house or leave the property was every 90 days to go to my doctor's appointment. And it was hard and, like I said, now I don't even have to do that. These people take care of it all.
Speaker 1:So how many times a week do they come?
Speaker 3:Four out of the five days Wow.
Speaker 1:And is it always a nurse, or is somebody different each day?
Speaker 3:It's someone different each day, just about the nurse comes on Tuesdays and Fridays, the lady who helps me take a shower comes on Mondays and Thursdays, and then on Wednesdays, the caseworker comes.
Speaker 1:Yeah, and it's I don't know. We've said this before, you know. I think everybody should have the connection with hospice made now so you have it before you need it, at least palliative care. You know everybody with Lewy body dementia is eligible for at least palliative care, for sure. Does anybody have you do any exercising while you're no?
Speaker 3:No.
Speaker 1:That could be enough. I guess have they mentioned exercise.
Speaker 3:I had physical therapy, okay, just not long before I fell, you know.
Speaker 1:Okay, okay, yeah, and I think it's Jim. They had palliative care and physical therapy with Jim, but it was in the beginning. People were storing masks, so that made me very anxious, storing masks, so that made me very anxious. But he we were going into like the facility where you had a bunch of people around are all doing different things and it was just way too much background noise for him. And then I said, can you guys come to the house because this is too much noise and they're like sure, so that's, that's an option too. But I, I know I wanted to ask you to just share a little about. I mean, you look and sound so much better than you were. I will say Linda has moved your medicines away from you, right?
Speaker 3:Yes, she cleaned off that table.
Speaker 1:Well, in your defense, you probably didn't even remember that you were smacking down some Valium and got yourself in trouble.
Speaker 3:I think that's the only med. Now. When I first was diagnosed, they first put me on Aricept and I couldn't handle it, so they put me on Seroquel and then I was having trouble with it. And that's when Dr Hayes, when we went to him, he took me off Seroquel and put me on risperidone, but I lost my train of thought.
Speaker 1:Well, it goes to show, as we always say, no two people are alike with this disease, so no two meds or three meds, or five meds are going to work. So I think that's probably the most frustrating part, especially for those with the disease, is you don't know which one's going to work for you, like how Louie's affecting you individually.
Speaker 3:But I do. I think everyone should at least talk to hospice and get in their system when they first are diagnosed and at least get on palliative care.
Speaker 1:Right, because that leads right to hospice, so it just saves that extra step. I'm proud of you, for I am, because I know you're stubborn and unless there's bologna wrapped with bacon somewhere, you're not going to do it.
Speaker 3:That's pretty much true.
Speaker 1:That's what I said about. We were talking about chiropractors and he's like I'm not going there. I'm like because you're a sissy, and I'm like what if they had bacon wrapped bologna? He's like I may consider that right, but it's, you know, I, I totally get, I don't know, I guess, just like the word widow, I just I despise the word because it just I hate having to say it, because it it just makes me feel bad. I think hospice should be named something else, you know, so that that stigma is taken away or we keep doing what we're doing, like you said, Carl, is de-stigmatizing the word dementia, like that group that you're involved with. You know, just because you don't have dementia, if somebody has dementia doesn't mean you have to talk to them louder like they used to do at the gym. You know which used to get my goat up, as Curry would say. But I don't know. But we've been hearing so many good things, like people traveling and what the airports now have in place for people with dementia.
Speaker 3:The lanyards.
Speaker 1:Yeah, the lanyards. I mean we're taking baby steps. But I got to believe we're headed in the right direction. And to me it's the same thing as when you hear someone have cancer it's not all doom and gloom anymore. Or people who have mental health issues. You know you're not so stigmatized of, or people who have mental health issues You're not so stigmatized of. It's more acceptable nowadays. So I'm hopeful that dementia will get there.
Speaker 3:I think it's working on it.
Speaker 1:I do too.
Speaker 3:I do too, Like I said we've got people in the group, We've got so many people attending that every now and then we'll ask them hey, how did y'all hear about us? And we're getting more and more of the people saying well, my doctor recommended I listen to it, you know. So we know we're getting it out there, yeah.
Speaker 1:Well, that's good to know there.
Speaker 3:Yeah, well, that's good to know, carl.
Speaker 2:Any final words for those seeking a diagnosis or people who are new to newly diagnosed um I guess the only advice I would have is don't focus on the prognosis and the diagnosis um. Focus on living your life, doing the best you can with the challenges you're faced with, and give your care partner a lot of grace because they're dealing with a lot that they never thought they'd have to do. Give yourself a lot of grace because you're dealing with a lot of stuff that you never thought you'd have to deal with, and just really try to focus on living your life as positively and proactively as you can, and don't worry about tomorrow, because tomorrow is going to take care of itself. And do what you need to do for your family and your loved ones today. And do what you need to do for your family and your loved ones today.
Speaker 1:Yep, I perfectly said. It's giving yourself grace. And so what if you didn't go pull the weeds today? They're still going to be there tomorrow.
Speaker 3:That's right.
Speaker 1:Get on tomorrow. Whatever you feel like you are letting anybody down and not doing it, I'm gonna be.
Speaker 3:The good news is it's still gonna be yeah, you can't beat yourself up for having apathy. Uh it it. Apathy to me is how I felt about depression. The same thing. You know, I didn't believe in apathy either. I hate to say it, but I did. I didn't believe in it either. I just thought people were lazy, you know, making excuses for not doing things. But, uh boy, was I ever wrong?
Speaker 1:and I I apologize again so many people yeah, no pressure, but you need to start writing that, that blog, carl, because I think it's really gonna. It's really gonna help a lot of people like Curry.
Speaker 2:You can't live with a lot of regrets. You did the very best you could with all the information and knowledge you had and the circumstances you had. I think all the caregivers are trying to deal with that right now, trying to deal with whatever hand they're dealt with. You did the very best you could, yeah.
Speaker 1:Yeah, yeah, yep.
Speaker 3:Folks, that's all we have time for this week. Thank you, carl. We really appreciate you coming on and sharing your experiences with us and giving words of encouragement. Folks, we want all of you to be part of our podcast series and share your thoughts on topics you want to hear about. We'd love to hear your feedback, so get them on into us, yeah.
Speaker 1:And thank you again. I'm not nervous anymore, carl. We just started at the end and gone. You're going to have to come back and I'm going to text you when I get done here and I close everything down If I can get the other computers working. I'm going to be like I'm going to be really mad that it worked, but I did a workaround so it's all good. But thank you for sharing and thank you for, you know, doing that blog and and you said, it's hard for you to do and the same thing. Give yourself grace, walk away, come back, start over and being a part of that dementia people with dementia group, just like we have Dr Sarah Langer's in the doctors with dementia. So people aren't taking these diseases sitting down and we all just have to educate as many people about it as possible and help them understand just dementia. Thank you again, carl.
Speaker 2:Yeah, my pleasure, so glad to be here with you guys.
Speaker 1:So send your comments and suggestions to our louiebodyrollercoaster at gmailcom or you can send us messages through the Facebook pages, our Journey with Louie Body Dementia or the podcast Louie Body Rollercoaster Podcast Group. We really can't thank you all enough for supporting us to keep this podcast going as we continue to learn from one another and your patients. When we were doing pretty good this year getting them back to back and then somebody had to go take his visit in the hospital and I think I think you just wanted sympathy because everybody keeps sending you all that chocolate now I know right, I'm eating that up.
Speaker 3:That was a good plan it worked that's the best laid plan I could come up with. Yeah, well, folks, as always, we will continue to post the link for the podcast each week in our Facebook group, our Journey with Lewy Body Dementia, and on the Lewy Body Roller Coaster Podcast group, as well as many other groups. So thanks for joining us.
Speaker 1:Yep Until next week. This is Linda.
Speaker 3:And Curry signing off you.