Lewy Body Roller Coaster

Resilience in the Face of Lewy Body Dementia Shared by Sam and Tracy-Part 2

February 13, 2024 Season 4 Episode 7
Lewy Body Roller Coaster
Resilience in the Face of Lewy Body Dementia Shared by Sam and Tracy-Part 2
Show Notes Transcript Chapter Markers

Welcome back to the podcast Sam and Tracie. Sam has LBD and shares his path to diagnosis. Tracie shares some great caregiver tips. Sam shares helpful uplifting ways he deals with his diagnosis and as Curry says...lives his best life.

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Speaker 1:

Welcome back podcast family. Let's continue our talk with our friends Sam and Tracy, as they continue to share their Louis body experiences.

Speaker 3:

I've got a few questions here. I'm going to break it down so I don't overwhelm y'all, but this is for the both of you. What advice would you give those seeking a diagnosis?

Speaker 2:

Be flexible, understand the journey to diagnosis is not simple. It's not cut and dried. If you ask a hundred people about their diagnosis, you're going to get a hundred different journeys to that point. Tracy helped me a lot with this was just be patient with it, just because our symptoms can be all over the place. I think that's one of the challenges that neurologist experience is they see 10 people that they're trying to diagnose with Louis body but they all 10 or 100 or however many they may be seeing they see so many variations of how it comes out, how it presents. I don't fault doctors for not knowing about Louis body, but it is so vast. It's a vast amount of knowledge for any one neurologist to come to understand all the variety of symptoms that we have. Patients would definitely come into play.

Speaker 4:

I think also the sheet that comes from the Louis body research center that is so powerful, because I didn't have that. I didn't know about it. The first few doctors we saw and then I saw a copy of it and I wrote a note to my doctor before we Sam's doctor, before we went in for the original appointment with them, they already had a clue as to what we were coming in for and what my suspicions were.

Speaker 3:

Folks, she's talking about the Louis body dementia symptom tracker page that's available at the Louis body resource center. Norma Loeb has done a great job putting that symptom tracker together. You can go in there and print it up and that way you've got it to fill out and carry it to your doctor's office.

Speaker 1:

We always try to write down all the symptoms you see and even videotape some of them. Like Sam says, one hand, you can't fault the doctors because those are Louis going there and show time and act as normal as they can usually act.

Speaker 3:

I can tell you when Norma started making that symptom tracker she had on a spreadsheet and she ended up having like 90-some symptoms. She broke it down to the symptoms that were most occurring. It's really a great tool to carry to your doctor's office with you Folks. Share again, if you haven't yet, what tests Sam had before he got the Louis body dementia diagnosis. From both of your experiences, what would you suggest people take with him to the doctors on the first visit?

Speaker 2:

The first test that I remember having were brain scans and they didn't show anything. I had the dad scan that shows the little comma-shaped things in the middle of your brain. I remember what that's the parent, it don't matter, but anyhow the and.

Speaker 4:

All kinds of blood work yeah, eegs, ekgs, emgs. He had several MRIs. Yeah, he just had one recently and Doesn't know anybody.

Speaker 1:

They do all that to rule out other things.

Speaker 2:

You know yes.

Speaker 4:

I got a lot other things for sure Sam's actually had a lot of genetic testing to you, because the extra movement.

Speaker 2:

Yeah, for the second time there. There has been some recent breakthroughs with the genetics evolving a taxia, and, and so the, the, the, they're trying to connect my taxia with, with the genetic Pre-disposition, and so, um, we'll see where that goes. I mean, I didn't have to have another, they didn't they? They used the samples that they got two years ago, um, in the database to compare with, uh, with the new findings.

Speaker 4:

So We'll find out about that, you know, in in a month or two or three, I don't remember how long it takes but he's had multiple personality, those tests, those four hour I think he's had three of those and I actually kind of keep up with sam On where he is by doing my own little test Just to see if he's improving or if I'm noticing a great decline. You know how long does it take him to change over a little laundry or, um, things like that fix the ball of cereal just to just to try, and you know when do I need to be in his task. We just recently found out that sam is is hating list. I, I'm a list maker and let's take her off her.

Speaker 2:

That's kind of a stretch, honey. I don't know that. I would say I hate a list.

Speaker 2:

He doesn't like him, he strongly doesn't like that list a list really frustrates me because I don't have the ability to pick one thing off of the list. I just look at the list in total and try to process everything on the list at the same time, and that that doesn't. That doesn't work well with me. Um, now I am able to follow directions to a symbol furniture, but I, um, where it should take me an hour, it takes me eight or ten, because I have to read the direction, that next step, and I have to read it over and over again and and pre fit and Make sure I have the right fasteners and all that junk. But but Even with those directions, I can single out that next instruction detail and Don't worry about all the others.

Speaker 2:

But when she writes a list, you know, check the vacuum cleaner, empty the dryer and and fold the towels and and Put everything. I mean, it's just, it's overwhelming to me, um, because I read so much into that list that she didn't intentionally do. Now she didn't, she didn't make make lists anymore, but she's very, very good about keeping track of where I am, what I'm doing, and sometimes I forget to tell her when I'm finished and and so that's on me, though.

Speaker 1:

It's about understanding where your loved one is at the moment and being flexible, like because Sam and Tracy shared about the list story in our support meetings. It's great that people can hear you know what I like you. I didn't even think to keep track of things like you're doing, like doing your own little testing of things that that sam used to do and how long it takes them. I mean that's, that's a great idea to do. Um, to figure that out.

Speaker 4:

In the beginning it would take him five minutes to get stuff out of the dryer and Then switch away. Then now it's 30 minutes, so you know that's that's quite a decline. However, that makes me know that maybe he just needs to get the clothes out of the dryer, not do anything with them, and working full time. I needed that support to try, and because we don't have another caregiver I am the only caregiver and Sam does not eat unless someone puts food in front of him. He very rarely will fix himself something. If he does, it takes him a long time and I'm like an hour to make a bowl of oatmeal. So it's something that I need to support him to do that and that has been very telling to me over the last couple of months.

Speaker 1:

Right, but I remember you sharing about. You know you're thankful that he said that to you about the lists, and now you put one thing on the list which we were all like is that really a list then? But it's, it is. It's something to do. But Curry's the same way. He doesn't eat unless somebody puts food in front of him.

Speaker 3:

Yeah, I don't get hungry. You know I don't think about eating unless Linda she'll fix me a plate and put it in front of me. You know, other than that I don't think about eating.

Speaker 1:

Well, unless you know where I'm going, Reese's unless someone accidentally leaves their bag of Reese's on the floor. When they get put in the hospital for three days and you come back and the empty bag was sitting on the floor and I'm like, yeah, Reese's or caramel popcorn.

Speaker 1:

Yeah, we just found that out, like the kind in crackerjack box. Yeah, yeah, yeah. Before we ask any more questions to all of you listening, please, please, share the podcast name with your doctors and any medical personnel you encounter. One thing that gets Curry's goat up is doctors only wanted to see you twice a year, like Tracy said, only for 10 minutes after you get diagnosed, which we all know. That's way too long of a period between gaps of visits with the patients Because, curry, now I think you see them every 90 days, right, but anyway, there's no way that doctors will remember you six months later, especially when they see so many people.

Speaker 1:

So we just ask you all to share the name of the podcast and a few, because the more we share, so the you know. I just imagine them hoping doctors can listen to it in their car and they can hear other Lube body. You know all the Lube body people that have been on in the last two and a half years and we have. We now have business cards made up for the podcast with QR code on it. So if you want us to send you, mail you some of the business cards, you just send me a message, or, curry you know through Facebook messenger or at the Lube body roller coaster at gmailcom. We'll. We'll mail them out to you if you want to hand them out.

Speaker 3:

And we also have a bunch of brochures made up, uh, talking about the lily body. So if you want some of those, just let us know and we'll send you some. They're. They're great handouts to give to the doctor or the emergency room personnel, whoever.

Speaker 1:

Yeah, is the QR code not?

Speaker 3:

this is new to me you know, we had this code on there.

Speaker 1:

Is that the QR code that goes with the pod podcast? Yes, yes, I want them Right there on the back. Could you send me one?

Speaker 3:

Yeah, yeah, I'll send you more than one.

Speaker 1:

I know I was like and I'll send you some business cards. So there yeah.

Speaker 3:

But I'm out of cards. Oh, there you go.

Speaker 1:

So it's a good thing I brought it up. I didn't know, I didn't know we had this. Well, yeah, Thank for somebody did this for us. Anyway, I just wanted to throw that out. Throw that out to everybody that we can send you some stuff.

Speaker 3:

Sam, I'm always saying there's a lot of good life left after diagnosis. What words of advice could you share with others who get diagnosed with the lily body to stay positive and continue to enjoy life to its fullest?

Speaker 2:

I would have to say surround yourself with quality people that understand you, whether it be family, friends, but I mean by all means, surround yourself with good people, like we have in our Zoom groups. There is so much understanding there, it's immeasurable. But don't give up on life. Don't just sit home and fold your hands, stretch your horizons, because if you limit your creativity too much, I'm saying that I've lived about for decades. I mean, I learned it in my later teenage years. But when you're growing, you're growing, and when you're ripe, you're rotten. And I long to never be ripe. I long to always be able to learn and with quality people around you, it gives purpose to what you're able to learn, even though it may just be a thin vein that you can help with. Live a good life with Louie by having purpose, yeah.

Speaker 1:

Yeah, that was well put, Sam for sure. Yeah, there's, you know, and it's a lot of people are diagnosed with many diseases and you just have to live the best life you can with what you have. Go out there and start a podcast people Right now.

Speaker 3:

There you go.

Speaker 1:

That's it and five support groups and Facebook pages. But anyway, I just wanted to piggyback real quick because we've talked a lot about attending the support groups and we always say that the days you're struggling and don't want to attend one of the support meetings, those are the days that you really need to attend the meeting, because people in the group always listen and provide uplifting support. I mean this last, the meeting we had yesterday, friday's meeting. It was such a great. I texted Karim. I thought it was just such a great meeting.

Speaker 3:

It was just and it was so many of them are. A lot of times you don't realize it may not be what you put into the meeting, but it's what you get out of the meetings.

Speaker 1:

And what everybody feels comfortable enough in sharing. And, like Sam had said, it's just like one of my classrooms, like you have a whole bunch of different personalities and we have a comedian in the group who always makes us laugh. He is like he's got the Robin Williams quick wit. I mean he just can come up with some pretty funny. It was just a very I thought it was probably one of our most powerful meetings and we had two, two kind of newer people come in. So and that's always beautiful to see is how everybody just welcomes people in like with hugs, virtual hugs, you know, and just and we're all there for each other.

Speaker 3:

Yeah, that's a tell their story.

Speaker 1:

Family. Yeah, that's a tell their story, because the one lady had come in saying her, her husband and the other ladies brother who's are in denial about the disease. And we've got a couple people on the group that were just like that and they are the ones that are most powerful on helping those people. You know, learn except, but anyway, I just wanted to thank you both for sharing with your listeners the power of attending, or you know, the support meetings. Not it doesn't even have to be ours, just support meetings.

Speaker 3:

Yeah, Sam and Tracy, this is a two part question. Is there anything else you'd like to share that we haven't asked?

Speaker 2:

Yeah, and I'm just, you know, expanding a little bit on what I said about draw closer people that understand you as you are, and that's the only way that you can fit all of that into a routine is by distancing yourself from the people that don't understand you. You know, kerry, being a truck driver, you have friends all over the country and I had dozens of truck drivers that I would talk to, you know, just to pass the miles and the hours away, and that was very enjoyable all those years of driving and then, as things kind of went south with me in driving and, you know, not able to drive anymore, all of those people I would still try to get in touch with, but they would well. First, it started where they wouldn't answer their phone when I called them. And these are people that we all called each other, I mean regularly, and they quit calling me and I would call them and they would talk. We wouldn't talk for two or three minutes and they would have to go.

Speaker 2:

But it's just kind of a slow evolution of everybody that didn't understand me. There was just this great distance that developed and you know. So none of those people call me anymore, none of them, even though they tell me they'll never forget me, and you know they want to keep in touch with me, but I'm still. I'm not. No, I'm not still. I will believe it when the phone rings and I see that it's them calling me.

Speaker 2:

You know I've still got all their contacts in my phone and I would talk to them till the cows come home to help them understand what Louis Body Dimension is about. And they have to be willing to do that. But the advice I would give is you know the people that don't get it, just let that distance develop, because if it's not helpful to you to have them not understand, then that's not going to contribute to your quality of life. And you know, like I said, I had friends for decades that I talked to that never call anymore. And you know, at first it's very disappointing, but then when, when I'm sorry she made me lose my train of thought, but when we realize that we can invest in time with people that do understand, that's that's that's a true positive meaning for your life.

Speaker 1:

Yeah, quality over quantity.

Speaker 2:

Absolutely, absolutely. And I I feel like I have relationships with the Lewy body community where, you know, the relationships that I had with a lot of people were an inch deep and a mile wide. I've got relationships with people in the Lewy body community that are an inch wide and a mile deep. I mean we talk about anything we can discuss at any time of the day or night through. In the morning If I need to call Curry, he'll answer the phone and if he needs to call me, we'll just make a phone call and I'll sit there and listen to minutes or hours, just whatever he needs, whatever anybody needs. So you know, just going to single Curry out, but it's anything anybody needs. We need to recognize that. You know we're here for each other, just like a true family is, and a lot of our members have stated that they feel closer to the Lewy family than they do their own family. They may just live down the street a short distance. They feel closer to us and it's because we have genuine connections, genuine interest in helping each other.

Speaker 1:

Yeah, I agree, that was well said. So what for Tracy? I'll take your next question, curry, this will be your last question for time's sake, because we could talk to you guys forever and your dog sounds like it needs to go out soon. Trust me, we've had our dog and bigger things happen. So what, tracy? What final advice would you give to others on this journey? Like final words of wisdom, perhaps?

Speaker 4:

I would say that you need to share with everyone that you're involved with about what you're going through and not try and hide that you're having some kind of help this you going on in your family. I think that people generally are going to try and go to bat for you if you've been their friend or whatever, but it does make people fall off of the friendship boat. But and I've got a great example here it also brings people into your life that you know that are going to tolerate you and Sam and I actually went to a dinner with some friends from church last Saturday and everyone in the room knew that Sam had dementia and we were. You know we talked to this guest about Lew Body and stuff and we actually have an invitation to come back. You know it's a lot for people to think, well, this is, this is different, but it's okay and so I really appreciate those people because that's just showing love and acceptance and, you know, just being kind to one another.

Speaker 1:

Yeah, well, I want to thank you both personally for coming on and sharing I know it just here and you, sam, some of the things you said in your Tracy, but just the way you word it, some things from a Lewy Body perspective is going to really help a lot of people. So you guys love you both like your family.

Speaker 4:

Let me tell you.

Speaker 3:

And I second. I second that I just think the world of both you guys, I love you just like your blood. Yeah, but, folks, that's all we have time for this week. We can't thank you both for coming on to share your experiences with our listeners. And please remember, 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 provide our email address below in the episode description, so please feel free to send us an email with topics you want to hear about or you want us to explore. We'd love to hear your feedback.

Speaker 1:

And our email is Lewy Body Roller cursor gmailcom. Or you can Facebook messenger with our at our journey with Lewy Body page or our Lewy Body Roller Co's page, because we really can't thank everybody enough for supporting us. Especially, I want to personally thank everybody for your patience as I tried to recoup or recover or recover is the word but just last year I wasn't able to do as much as I wanted to do with this podcast. So I want to thank everybody and remember we're doing this podcast for all of us and we appreciate that you tune in each week.

Speaker 3:

Yeah, and Sam and Tracy, I want to thank you all one last time. I really appreciate you.

Speaker 2:

We both do, but our pleasure and we're thankful for Curry and Linda for y'all giving us this platform to share about how good life can be.

Speaker 3:

Yeah.

Speaker 2:

It's wonderful. It's a wonderful life.

Speaker 3:

Yep, yeah and folks, as always, we will continue to post the link for the podcast each week for you in our Facebook group our journey with Lewy Body Dimension and our Lewy Body Roller Coaster podcast group page, as well as many other groups. So thanks for joining us.

Speaker 1:

Until next week.

Speaker 3:

This is Linda and Curry shining off.

Seeking a Diagnosis
Support Meetings for Lewy Body Disease