Episode Transcript
Speaker 1 00:00:08 Welcome to Lewy Body and mindful caregiving, candid space where I share my experience of dealing with being a caregiver for my mom who has been diagnosed with Lewy body, the ups and downs, the challenges that I go through, and she goes through as well. Thanks for listening. Welcome to the first episode of Lewy Body and Mindful Caregiving. This episode's gonna tell you the what and the why. What is Lewy body dementia and why am I talking about it and like what's really going on. First off, I'd like to tell you a little bit about dementia, the way that I understand it, and I want you to understand, I am not a doctor. I am not a medical professional. I am someone who is dealing with, um, a parent, my mom who was diagnosed with Lewy body disease, with Parkinsonian tendencies back in November of 2022.
Speaker 1 00:01:12 I have done tons of research to understand what's going on, what will go on, what will happen, the progression and all of that stuff. And it's been a challenge. It's been a roller coaster ride, and I felt very strongly that I needed to share, that I needed to open up and that I needed to express to you because I think it'll help someone else, if nothing else, knowing that you're not alone and that other people are going through this unbelievably difficult, rollercoaster, challenging time. So first off, what is Lewy body dementia? Well, dementia is actually an umbrella term. It is over many different, um, memory, uh, diseases, progressive diseases of the mind. There's Alzheimer's. Parkinson's is under dementia. Lewy body is a form of dementia. They all just kind of branch out. There are so many of them, uh, vascular dementia. They all have their own markers and they all work a little bit different.
Speaker 1 00:02:29 I'm not well versed in all of the other ones. I am more versed and aware of Lewy body because that's my mom. And Lewy body is where there are protein deposits in the brain, and these protein deposits, Lewy body is not, there's not a system or a pattern to it, it's random. So these, these protein deposits grow all over in random places all around the brain, and it messes with the cognitive thinking and the ability of that person, and they just continue growing throughout the brain. And because of the random nature of Lewy body, there's no way that you can say every patient is going to progress this way and then this way, and then this way, and then this way. Because one person might be able to talk and converse with you like normal, while another person can barely feed themselves like, uh, or can needs help walking from the bed to the bathroom, whatnot.
Speaker 1 00:03:42 It attacks different parts of the brain, whether it's motor skills, thinking skills, and each person is unique and different. So while Lewy body men, dementia typically follows the same progression as in they're okay. And then there is some cognitive and physical decline, and that gets worse, and then it gets worse, and eventually they are pretty much bedridden. Um, incontinent, non-responsive. Um, it usually goes similarly, but how and which abilities go vary vastly differently depending on the person and how those protein deposits are growing in the brain. Now let me illustrate this in an easier way to understand, and I love this analogy, and I'm so very grateful for the neuropsych doctor that explained it to me. Think of a band and or an orchestra. And in this orchestra you have your percussion instruments and you have your woods like the oboes and the clarinets and the saxophone, and you have the winds.
Speaker 1 00:05:01 No, the woods and the winds are the same. Um, you have the brass, like the trumpet, the trombone, you have the strings, the cla or the um, viola and the violin and the bass. You have the piano. You have all these different sections. And within those sections, as I just stated, there are different instruments. Okay? So your brain is like this orchestra. You have all of these different areas and they work to together to make this beautiful music that you are able to listen to, right? They make this beautiful ability for you to walk, talk, eat, critical thinking, having a conversation, making tough decisions, judgment. All of those orchestra pieces have to work together to make this possible. Now, each orchestra has to have a conductor. And this conductor is the one standing up there saying, you need to fire and you need to fire, and you need to fire. Okay? Now let's bring all that together, okay? Make it bigger, louder. We need to have a bunch of adrenaline because we're in risk or whatnot. Or let's calm down like the conductor, the frontal cortex. The frontal lobe is what is the conductor and helps everything work together. In Lewy body.
Speaker 1 00:06:26 The conductor is like that strand on of lights on a tree, and sometimes it's on and sometimes it's off, and sometimes it flickers, but it's not always all there. And when the conductor is taking a nap or on vacation, whatever he's doing when it's not on means that the rest of the orchestra is doing their own thing and not really functioning. They aren't really playing. So this person whose conductor is there or not there may drive down the road and a ball comes out in the middle of the street, then a child follows the ball. If the conductor is not there, if the conductor isn't working, that person doesn't know whether they should avoid the ball or the child because there's no critical thinking. There's no direction saying, Hey, this is what's right or wrong. And that gradually gets worse. And sometimes one day they may seem perfectly fine and wonderful and the next day they may be super challenged.
Speaker 1 00:07:43 Now, this is early stages. My mom was diagnosed in November of 2022, and I had seen things, which is why I ended up getting her tested. And we'll go into that in another episode. I really wanna talk about that journey from suspecting something was wrong to the actual decision to get her tested because it was a big one. But the bottom line I want you to understand is that of the conductor and the way that the orchestra is, things get progressively more chaotic. They have a harder time managing their emotions. They get anxious and suspicious of everyone. Eventually they even get suspicious of their caregiver. They might think that the caregiver is actually some alien that has been remade to look exactly like their caregiver, but there is no way in heck that that person is actually their caregiver. It is absolutely 100% an imposter in their mind.
Speaker 1 00:08:51 They may think that someone's stealing from them, even though they are the ones hiding stuff themselves. They may forget how to make a sandwich as simple as peanut butter and jelly or a ham and cheese. They will decline and they need somebody there to advocate and support them. Most of the time, that is a loved one that jumps in. More often than not. It is loved ones who choose to step up and keep their loved ones at home and do the caregiving. Statistically speaking, there are more caregivers outside of the medical field for the aging population than there are in the medical field. So I have become one of those people, and I needed to do research to understand what was going on. I needed to find support. I needed to find knowledge and understanding, and then I was able to apply it to my situation.
Speaker 1 00:09:54 And in finding that knowledge, I found more and more people who were dealing with similar things. Now, this is specific to Lewy body, and yet the information that I'll share, I think in many different ways, any caregiver will be able to sit there and look at it and say, that was good information. So the why, I'm going through it right here, right now, and I feel very strongly that I need to share it. The what? Lewy body. It is ugly. It is ugly, and it is super progressive. The average person, once they are diagnosed, have five to eight years to live. Some people are gone within a year. There are other people who have lived 10 years. That goes back to my statement of it progresses so differently in each person you don't know. And what are their lives like? Are they reclusive? Do they hide out from more people or are they more outgoing?
Speaker 1 00:10:59 Do they like to get a lot of exercise and be moving? Or are they more stationary? Are they isolated or are they enjoying life? Personally, I think that might contribute to the longevity of the disease or the quickness of the cheese, but I really don't know because I'm not a doctor and there is not enough research going on to understand fully what happens, why it happens. How do we change this way that that's going to happen is if people advocate and lobby and say, we need more research. We need to know what's going on so that we can help our loved ones help each other. And in the meantime, if we can find support systems, if we can find other people who are going through the same thing, then we won't feel so alone. We'll feel like there is somebody out here who actually understands seriously what you're going through, and that just feels a little bit better.
Speaker 1 00:11:56 So thank you for choosing in. I look forward to sharing my journey with you, and I sincerely hope that it brings you a little bit of hope, a little bit of peace, a little bit of relief. I hope that I can give you nuggets and gems of wisdom. I hope that I can impart the knowledge that I've gained and received to you so that you don't have to fight quite so much. And maybe there are little nuggets that make you go, oh, oh my gosh, I'm so glad you said that because now you have new information that you can go advocate for your own person with that. So if there are topics you want me to cover, if there are questions you have, please don't hesitate to reach out. And I look forward to the growing community that will exist because we're talking about it and we're uniting it. Thank you for being here. Until next time,
