Lewy Body Roller Coaster
Lewy Body Roller Coaster
Navigating Life with Lewy Body Dementia: Carl Ladd's Journey of Vulnerability and Resilience Part 1
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.
Thank you all for your continued support and patience with us as we try really hard to get a new podcast done- hoping we get one a week but as you all know, Lewy and life sometimes get in the way. We know you all understand and support us anyway and for that we thank you!!! xoxo
Remember...We are doing this for all of us and we thank you from the bottom of our hearts.
Should you wish to bless us with your support for the podcast, you can use links below.
Copy and paste link, if needed
https://patreon.com/lewybodyrollercoasterpodcast
the GoFundMe page at
https://gofund.me/c416ecb6
Thank you for listening.
Don't forget to join our Lewy Body Roller Coaster Podcast Facebook page.
welcome back podcast family yes, welcome back y'all thank you all for being so patient and our guest today for being patient. Um, as I forgot which buttons to push. Once again, curry. How many times have I said I'm just going to take a picture what I need to push? Once again, Curry. How many times have I said I'm just going to take a picture of what I need to push and I still haven't?
Speaker 2:Too many to count.
Speaker 1:But I'm going to blame today's guest on my frazzledness this time, and it'll make sense in a minute, but before we introduce him, we wanted to remind all of our listeners that we are not giving medical advice, rather sharing our open and honest feelings and thoughts as we live on this LewyBody dementia journey.
Speaker 2:Okay, folks, Now, as always, we like to give out some shout-outs to our new supporters. So this week we've got Fred Towns, Lana Badcock, Pia Bedard, Michelle Austin and Lisa Severs.
Speaker 1:All right, thank you for that. You're always on top of that for me. Um, and just a reminder that we you know we do fives, five, four, one, two, three, four, five zooms now a week, and the link and information for all those are above under the announcements at the top of the pages. I don't think it's announcements anymore. They changed it. But I also want you to check out. We've been trying to post, or at least send back to the top of the page, the flyer about the Louis Buddies and Caregivers Meetup we're going to do in September, on September 14th in Caney, kansas, near where Kari lives. So this is a shout-out to that event and for you to check out that flyer. We have about 70 people so far that have reached out to us. So check out that flyer and join some Zoom meetings. Sorry, this guest has me so choked up today. I'm just telling you I am like I'm breaking out in a sweat because I feel like, all right, go ahead, curry.
Speaker 2:Okay, I'd like to give another reminder that we're not giving out medical advice. We're just simply sharing our experiences living with Lewy body dementia. So let's get this thing started this week. Please welcome our friend, Carl Ladd. Carl, could you introduce yourself, tell us where you are from and how long ago you were diagnosed and how old you are, and then we can ask you some more questions but you, but please tell them what your profession was before you stop.
Speaker 1:You stop because that makes us all make sense of my, my, my sweat level right now I was uh, um.
Speaker 3:First of all, I just want to thank you very much for inviting me to come in today and and share some time with you, because your podcast was just a lifesaver for me when I first got diagnosed. I started listening right from the beginning and it really helped me figure things out as I was going along. My name is Carl Ladd. I'm 59 years old. I was diagnosed with Lewy body dementia in March of 2023.
Speaker 3:I live in Grofton, new Hampshire, which is a little town in the northernmost part of the state, close to the Canadian border. We call it pseudo Canada. I was medically retired by my neurologist the day I received my diagnosis. I was an educator for over 30 years. I started out as a middle school teacher, then a building principal, and then I was a superintendent of schools in two states, new Hampshire and Massachusetts, and I have all the alphabet soup after my name. I was honored to be named the New Hampshire Superintendent of the Year in 2014. And when I retired, I was the executive director of the New Hampshire State Superintendents Association New Hampshire State Superintendents Association, where we focused on professional training and working with state and national legislators on policies and laws, and we provided legal and mentoring services to superintendents and other systems leaders.
Speaker 1:So it was a busy job, but I do have to say I was a pretty relaxed principal, so I'm not sure why you're no, well, I'm just saying and, and in our zooms I I've said to you many times I you know I wish I would have had you as a principal because you, just you just come across as to such a caring person. But as a teacher, there's a superintendent and principal on Zoom. And I'm telling you, people, I got on Zoom 15 minutes early. I mean I opened up everything to record 15 minutes early. I texted Curry, I'm like I'm in and I'm like I'm going to be all ready for when the principal comes in and superintendent, and I'm like I can't get it to work. You just gave me all. Now I'm sweating more that I didn't know you were superintendent. So this may be a curry, curry and carl podcast. Oh anyway, go ahead, curry all right.
Speaker 2:Hey, carl, can you share with us some of the first symptoms you had that made you go back and seek medical attention? What I mean is what were some of your earliest symptoms you had?
Speaker 3:Yeah, when I look back now, my earliest symptoms that really kind of drove me to go back to see my doctor were severe depression and apathy and confusion. I mean, my job required me to go to a lot of meetings and meet with members and legislators and respond to phone calls and all those things, and I just found myself more and more just not able to muster the energy to do the job. There were days when I couldn't even get out of bed to go to a meeting or to a work. I just didn't understand what was going on. And you know, you don't get to a position like mine without having some kind of drive and a willingness to get out there and do things. And all of a sudden I just really didn't want to do anything, to get out there and do things. And all of a sudden I just really didn't want to do anything. I really thought I was having some kind of a mental breakdown and I thought I'd already had my midlife crisis. So I didn't think that it was a midlife crisis, but I just wasn't able to get out of my own way. I started forgetting meetings and I didn't remember to return phone calls. I forgot to answer emails Anytime someone told me something. I forgot it, even if I wrote it down, I forgot it. I got lost going to meetings, places I'd driven to a hundred times. I got lost. Then, when I showed, showed up, I forgot why I was there, and so it was just it was.
Speaker 3:It was a lot of confusion, a lot of depression, and that's kind of what drove me to go back to see my doctor. I hadn't seen him for a couple of years, so I went back to see him. He thought it was just, you know, stress from my job, and so he had me go back and talk to my counselor because I'd had a stroke in 2017. So I had a neurologist, I had a, you know, I had a. I had a great and still do have a great primary care doctor. So he sent me back to see my counselor and after my second visit with her, she said no, there's something not right here, there's something not going on that should be going on, on, that should be going on. So she she had, um, dominic, my, my doctor sent me back to see my neurologist and that's when she she kind of evaluated me based on what she had seen me before and said, no, we, we've got to run a bunch of tests, so that's kind of what drove me back to see the doctor.
Speaker 2:Carl, you talked quite a bit there about depression. I went through that. Did you recognize that you were suffering from depression or did someone have to point it out to you? Because I, I didn't. I had never dealt with depression before and I didn't realize what I was, what I was dealing with at the time and and you say you didn't believe in I didn't believe depression was real.
Speaker 2:I always thought, you know, uh, they're just a weak person or something. And I've had to go back and apologize to a lot of people because I now know what depression is. Yeah, I mean, I've always, you know had a good understanding of depression.
Speaker 3:Just, you know, we've had, you know, some issues of folks who've had depression in my family and so, and you know, certainly, working in the school system, you see a lot of kids and teachers who are clinically depressed and you have to kind of work with them. So I mean, I could see that I was depressed. I didn't understand why. I loved my life, I loved my work, I loved my family. I didn't understand why I was depressed and I didn't understand why I was depressed and I didn't understand why I couldn't get out of bed and why I didn't want to go to work and why I didn't want to leave my apartment.
Speaker 3:You know, and you know we, I work in the state capital, which is about two hours away from my home, so I would, I had an apartment that I lived in during the week and I came home on the weekends and um, so Michelle really only saw me on the weekends Um, and you know, if I took some time off which I didn't take as much time off as I probably should have um, we talked every night on the phone, but that you know that just wasn't the same thing. So it wasn't until I came home. She said Christmas time was around, thanksgiving actually Thanksgiving time that she really started to notice that things were not. Things were not right, that things were not right. And then I started falling a lot hitting my head. Oh yeah, I was a mess there for a while.
Speaker 1:Do you remember when she first brought to your attention what symptoms she specifically saw that made her concerned?
Speaker 3:I think it was the. I think it was the falling more than anything else, because I wasn't really telling her what I was dealing with, um, I wasn't telling her that I was seeing shadows and shadow people, um, and that, and then I wasn't able to get up and go to work because I just like you said, curry, I just thought I was being a weak person.
Speaker 3:I just get a grip on myself and get up and get going. Michelle, and I have always been like that, even with our girls. You know, it's like you know get up, walk it off, suck it up right, um, and so it was. It was really, it was really difficult. So I think it was more the, the physical part that she really started to notice. I was tired a lot, I slept a lot and my whole left side was very weak and really felt heavy. I was dragging my leg around. I had to start using a walker my old walker from when I was recovering from my stroke in order to get around. So that's when she really noticed that things were not right. And then, as we talked more and she kind of pulled more things out of me, then she realized that there was a bigger picture.
Speaker 2:I tell you what. That sleeping part I guess we all go through that. That's just a hard thing to go through.
Speaker 1:Yeah and apathy. Yeah, to go through. Yeah and apathy Like we yeah. I guess the depression, the apathy and the sleep and then the falls, and that's a big thing we hear a lot about when we talk in our Zoom meetings. So, um, what? So you went, you said you have a good uh, family doctor which is great and a neurologist. What were the steps that they took in order to get you diagnosed? Like? What tests did they have you do?
Speaker 3:um, so when I went um, when I went back to see um dr hughes, my neurologist, and she realized that things had, you know, that I had deteriorated from when I had seen her the last time. She you know, I had blood work I don't think I've ever given as much blood as I had during that time and I had an MRI, I had a CAT scan, I had a lumbar puncture. I took the little test Was it the MOCA MOCA test? I took that. I think those were the main tests.
Speaker 1:Where is that attentive? He's going to mark me. He's going to put an X where I wasn't.
Speaker 2:You weren't paying attention.
Speaker 3:That will figure prominently in your evaluation.
Speaker 1:I've never gotten a bad evaluation and this podcast is going to make me have one. I'm just going to sit back and listen. I'm sorry, I don't know, because, carl, I've known you for a while now through Zoom and I've never been. I don't know.
Speaker 2:It's funny.
Speaker 1:Because I want to do my best and I'm not clearly wasn't even paying. You're doing just fine. He didn't study. Oh Lord, I would make something funny when I did something stupid in front of a principal or when a principal did something silly. Carl, you can relate to this.
Speaker 1:I had a vice principal once and I was teaching about the elements and their symbols and I was like, okay, what is CA? And the kids would raise their hand and I'd pick on them and then I forget what one I chose. And the vice principal was sitting in the middle of the room. She's putting her hand up, waving it, like, please pick on me, please pick on me. And in my head I'm going do I pick on her Because she wasn't a science major? What if she gets the answer wrong? Then how am I going to recoup? So this is what's going through my brain. And she's making it so like, really, pick on me. And I picked on her and she had the wrong answer and I was like she's just, I forget what I said. I was like, oh, she's just playing with us. Everybody tell her what it is. And you know, it was just. Yeah, I don't know why I'm so nervous today. I've never been nervous recording before curry. You've never seen me like this.
Speaker 2:I'm enjoying this.
Speaker 1:Oh Lord, Okay, you have the next question, Curry.
Speaker 2:Curry, what were the challenges that Louie's throwing at you now and how are you managing them?
Speaker 3:I think right now, physically, I'm doing pretty well. I think right now, physically, I'm doing pretty well. I think the medication and the I've had a year of physical therapy and I think that that's really helped get my balance back and I'm able to walk around now with just a cane rather than a walker, which makes such a huge difference in the quality of my life. Most of my challenges right now are really like a lack of concentration. I've written down all the answers for this because I knew I was going to not remember. I have brain fog all the time. It's like it never ends. I never feel like I have a moment of clear thinking. I always feel like my brain's a little mushy and it just kind of some at the end by the end of the day I feel like I'm walking around in mud in my brain and then the other.
Speaker 3:The other thing that I just haven't been able to to to figure out how to manage is is apathy. Yeah, it's myself as much as I can, um, but there are days I just really I don't want to do anything, I don't, I don't, you know, and it's not like I don't, I don't care, it's just that I just I can't muster the the energy to pick it up and do what I need to do. It's really that part is really hard for me and it's hard for me to kind of express to my family. And you know, I always feel like I'm being a lump on a log if I don't want to do something. But it's just, I don't know, it's just hard to get out of my own way sometimes yeah, let me ask you a question real quick.
Speaker 2:uh, dealing with your apathy, man, I know how that is. But are you on like ritalin or modafinil or orderall anything like that for a stimulant? No, okay, I'm not on anything like that.
Speaker 3:No, I'm just on. You know, I think I'm on like probably the most basic drugs, you know Aricept and.
Speaker 3:Gabapentin and sertraline, basically yeah, and I know I see my doctor next month, but yeah it, just I don't know what to. That's the only thing. I just really don't know what to do with. I'm trying to cope with everything else, um, trying to exercise more and trying to be as active as I can. I was telling curry before we started. I'm feeling pretty good right now and I, you know, I I'm just kind of riding the wave because I know, I know what's coming next eventually. Uh, there going to be another down.
Speaker 1:You're going to sleep when we're done? Yeah, you're going to sleep when we're done. Recording today. I'm just giving you a heads up with that. Now I want to ask you because I know you had apathy and all that, and again, we're not pushing any medicine for those that are listening. But I know when Jim started I think it was Ritalin there was a spike in his, I think, the way he tried to explain it to me. Well, first, carl, you'll appreciate this, because he said I don't know, I guess he equated with me being an eighth grade teacher and and he knew that kids, you know, there are kids in school that take, take those kinds of medicines and for the kids, it calms them for some reason. With Lewy patients, it gives them clarity and energy. So Jim took it for the first time and I can clearly see him walking in the back gate to the pool area and he was like I feel like a middle schooler and I was like what? And I realized what he was trying to say.
Speaker 2:Yeah, that was when he started the Ritalin, wasn't it?
Speaker 1:Yeah, yeah. And when you started the Rital you just like it was all in instant clarity about about 40 minutes after I took my first pill. Yeah, yeah and you and it worked for you for one year, one year, and then it quit working.
Speaker 2:But it did work good, you know, for that one year.
Speaker 1:But uh man, when it quits working, it quits and you're right back to square one it's just, I think, when every those of you that come on, that share that, that have louis, it really does mean a lot to everybody else listening to hear that. Okay, I'm not the only one with apathy and and, like you, curry. Okay, depression is a thing you know, and just how do I work myself out of it. And we always say in our support meetings the days that you don't want to come to the meeting are the days you really need to be there Because someone I don't know. We have some characters on our Monday Friday Zooms and they're always making us laugh. I mean, someone called Carrie a sissy in the last meeting because he was afraid to go to a chiropractor. I won't mention who did that.
Speaker 2:Right yeah, right Linda.
Speaker 1:But from one educator another to another. Carl, I feel like you, and you, just like me, couldn't take Louie sitting down and I just decided to do something to help others and to educate. That's where this podcast originated, and then the Zoom meetings and everything that we have going on. So I wanted you to share with our listeners, because Harry always says there's not a lot of good life left after Louie, and sure you're dealing with all these symptoms, but you can still do a lot of good in the world, especially for other people. The first thing I would like you to share about, if you would, is your blog. What's the title of it and when did you start it?
Speaker 3:Yeah, I started my blog. It's called my Walk With Louie and I started that. Oh gosh, I think I started last August. So I was diagnosed in March and it wasn't really until August that I was able to do much of anything except, you know, kind of feel sorry for myself and be depressed about the diagnosis and just trying to come to grips with all of it. So I started the blog primarily just for my family and my friends, so that they understood what was going on.
Speaker 3:Because you know, I had a lot of people asking Michelle and asking my daughters you know how I was doing and what was happening with me and even a lot of my colleagues didn't know what had happened to me because I retired quote unquote, retired so quickly from my job and I really didn't get any closure when I left it. Just, you know, I just stopped working. So I really wanted to start writing a little bit about kind of what I was going through and just what Lewy body dementia was, because nobody knew what it was. Even I didn't know what it was when my neurologist told me that that's what I had.
Speaker 3:And I wanted to leave a little bit of a legacy from my grandson because I didn't want him to only think that I was the grandpa with dementia. I didn't want him. You know, he's four years old, so as he gets older I'm going to get worse. So I want him to, you know, I want him to be able to at some point look and see oh yeah, my, you know, this was. This was who my grandpa kind of really was. So that's why I started it. It takes me a long time to write now, and I think it was a couple of my blog entries. I had written the whole thing. It took me days to write the whole thing and then I hit some button I think it must be Linda's button that she can't ever find this podcast. I think I did the same one and the whole thing was gone, and so I had to start all over again.
Speaker 1:Yeah, I remember you posting about that on on Facebook, but you know I I know I do enjoy it.
Speaker 3:It's getting harder for me to do that, but I want to keep at it for as long as I can.
Speaker 1:And I want to tell you I appreciate it. I could hear your sense of humor coming in, even though I could feel your pain that you just hit the wrong button and lost it. But you put a humor twist on it. You know, like, okay, I'm going to start over again, and you know that is so funny. I have these buttons.
Speaker 1:This one says no whining. Oh, of course there there's no battery. I've got all these little buttons I used to have on my on my desk. The kids were whining about it as something. I'd hit that and so it's funny. You mentioned buttons in my world. I will figure out the wrong. Just did everybody know I could not hit the right button this time around. I had to do what I said, what Jim used to call his workarounds. When his brain wouldn't let him figure out something that should have been easy, he would do workarounds. So I did a workaround in order for us to record. But as soon as we're done I'm going to try to get it going again and I bet you it'll start, because the principal's not here.
Speaker 2:Hey, carl, I understand you totally. Bet you it'll start because because the because the principal's not here. Hey, carl, I know what you. I understand you totally when you talk about leaving a legacy for your grandson. I've got eight grandkids. The four oldest ones, uh, they're all in their late 20s, early 30s now. They knew me before I got sick and we had a lot of fun with them growing up. You know a lot of fun. Now I've got four younger grandkids and they didn't really know me until I got sick. So when they think of me they'll only think of Papa, who had Louie, you know. So I totally understand what you're talking about there. That's very important. Yeah, can you tell us what some of the past topics you wrote about on your blog are?
Speaker 3:Well, I wrote a couple of topics about just my physical challenges that I was going through, a couple of topics about just my physical challenges that I was going through, and I devoted one whole blog to brain fog, because it's just so. It's one of the things I really grapple with a lot and I know I'm going to I've been putting it off because I really am not sure I want to write about it, but I know I need to is about apathy and I am going to write a blog about that. That's one of the ones I've got planned, but it's really just kind of chronicling what I've kind of been through, trying to deal with different things.
Speaker 1:Now I know I assume with your background that you did you write articles for magazines or write a book or anything. I'm just asking because, harry, we know a lot of people who had no, like no artistic ability whatsoever. They got Louis and all of a sudden they could paint.
Speaker 2:Oh man, one of my friends never painted before and he got diagnosed with Louis and now he does some good artwork, stuff that should be published, and he never did cook and now he makes all the meals. And I mean we've known several people who do things now that they never did before. They got Louis.
Speaker 3:It's really weird. I was always a pretty good writer. I did write a few articles for school administrator and things like that, and one of my articles went into a psychology journal.
Speaker 1:But yeah, I forgot what I was going to say. Well, I'm just saying that I think maybe you should consider submitting some of your things to neurology journals. You know, just from here, in the perspective of the person with the disease, you know, instead of someone. It's kind of the reason we started this, because I would just get so not mad, but just frustrated that we would hear about someone passing from Louie which you usually pass from something other than Louie body, but someone passing who had the disease and then their spouse would tell you what they thought the person was going through or feeling. And that's when I contacted Carrie and I was like no, we got to hear from the people with it so that the other people with it totally understand.
Speaker 1:Because I just don't think like I can't accurately describe what Jim was going through. I can tell you how I acted, but what you're doing is you're like writing about it, which I think is going to really help a lot of people. That's why one of the reasons I wanted Carl to come on, it's just the more of you all who have the disease that speak up and share, I think, the better the people behind us are going to be for sure. So I really appreciate that you're taking the time. I know it's a frustrating struggle some days not to be able to get out what you want to get out, but I appreciate that you're doing that. We're going to stop this week's recording with Carl and pick up with part two next week.