Beyond the Mics: Happy Hour with ALS Podcasters

In this special roundtable episode, I welcome three fellow ALS podcasters for a conversation about the stories that stay with us, the people we’ll never forget, and why a microphone can become a lifeline.

So happy to chat with Alison Burell-Stanley and David Stanley, hosts of I Lost My Person, who share how losing spouses to ALS eventually led them to friendship, love, and a shared mission of helping others navigate grief. Together they talk about remembering the people we’ve lost, saying their names, laughing at the memories, and discovering that joy and grief can exist side by side.

Cory Mosley, host of ALS Matters, offers the perspective of someone living with familial ALS while navigating the realities of treatment, advocacy, and uncertainty. He shares what he’s learned about turning overwhelming medical information into conversations that people can actually understand—and why stories often teach us more than statistics.

Together, we discuss:  living with grief while still finding joy, what listeners have taught us over the years, how podcasts create community when people feel isolated and more.                      

If this episode encouraged you, please subscribe, leave a review, and share it with someone who needs to hear these stories. Every share helps another family find hope.  Hugs, Lorri

Follow and see what's coming next: Instagram,  Facebook,  Twitter, TikTok,  LinkedIn.

Transcript

Welcome And Why We Gather

Paul Carey 0:08

Hey, I'm Paul.

Christian Carey 0:10

And I'm Christian.

Paul Carey 0:11

Welcome to I'm Dying to Tell You. Inspiration shared by our mom who is dying from ALS.

Christian Carey 0:16

There's no cure for our mom or anyone else with ALS. But right now, she's on a mission to find and share stories of inspiration.

Paul Carey 0:23

Coming to you from Cincinnati, Ohio, we're happy to introduce the one lady we've both loved since the first day we laid eyes on her. The Queen of the Queen City, our mom, your host, Lori.

Lorri Carey 0:54

Hello. Welcome back to I'm Dying to Tell You. I'm your host, Lori, and I am feeling very podcasty today. Instead of interviewing one guest, I'm pulling up a chair for a happy hour conversation with some fellow podcasters and dear friends who are making a difference in the ALS community through their own power of storytelling. I am so happy to have back on the podcast husband and wife Alison Barrell Stanley and David Stanley, the host of I Lost My Person podcast. And Alison and David each lost their spouse to ALS. And through the unimaginable loss, they have found friendship, then love, and how they honor their late spouses every day while sharing honest conversations about grief, healing, life after loss, and what's happening throughout the ALS community. And for the first time, I'm so happy to have Corey Mosley, host of ALS Matters podcast. Corey is living with genetic ALS. And through his podcast, he shines a light on the latest research, innovative projects, advocacy efforts, and the voices of others living with this disease. Because he is living with ALS as well. His perspective is thoughtful, it's hopeful, and it's always grounded in the belief that every story matters. The four of us realize that while we all host podcasts, we never actually sat down together to talk about podcasting, you know, what we've learned, what keeps us going, and the conversations that have changed us and why we continue to press record and share with all of you. So grab your favorite beverage and listen in to this very special happy hour. Let's jump right into the conversation. Let's go. Hello.

SPEAKER_01 4:00

Hello, Alison.

Lorri Carey 4:03

Hello, David.

SPEAKER_07 4:05

Hi, how are you?

Lorri Carey 4:08

Good. How are you?

SPEAKER_07 4:10

Doing good. Hey Corey.

SPEAKER_06 4:16

How are y'all?

Lorri Carey 4:17

Good. Hey Corey, where are you at?

SPEAKER_06 4:20

Charlotte, North Carolina.

Lorri Carey 4:22

Oh, you're in Charlotte. Oh, okay.

SPEAKER_06 4:24

Yeah, I've lived pretty much my whole life in the Carolinas. Actually, I've lived every bit of my life in the Carolinas

Happy Hour With ALS Podcasters

SPEAKER_06 4:30

between North and South.

SPEAKER_01 4:31

Nice. Can you let me in on my computer? Yeah. Oh, got it.

SPEAKER_07 4:40

We're in the same house. We're just in different rooms.

Lorri Carey 4:43

Yeah. Already? You're already in different rooms? You have not been you have not been married that long.

SPEAKER_06 4:53

We got a sleep divorce not too long ago, and it's it's been for the better.

unknown 4:58

Okay.

SPEAKER_06 5:02

I am still at work. Yeah. I literally was scrambling to finish a call to jump on.

Lorri Carey 5:08

Oh my gosh. When are you when is your job coin?

SPEAKER_06 5:12

So I work in telecom. I have since I graduated ECU. Um, but I work for Crown Castle. We're the third second largest tower company in the country. So we own cell phone towers and I manage their vertical envelope program. So think about it like an apartment complex. If you are T-Mobile and you're at 150 feet, I make sure that you stay with inside your leased space.

SPEAKER_03 5:38

Oh, oh.

SPEAKER_06 5:39

So I've done, I mean, I started out actually building the towers after I graduated and then switched over to um Crown to be a construction manager for them, done like fiber work for them, tower builds, anything to do in the telecom world other than like troubleshooting the data centers. I'm pretty much done at this point.

Lorri Carey 6:00

Ah, interesting. Very cool. Oh, good. Yeah, that's cool. Yeah, I mean, yeah, you've done all the aspects of it. That's really cool. Well, um, okay, so I'm so happy that we all reconnected. So the last time that we were all together was like almost a year ago. I think it was September.

SPEAKER_06 6:29

Yeah, the Joe Martin Foundation dinner, right?

Lorri Carey 6:33

Yeah, yeah. And we're like, hey, we should all jump on and chat. And then OMG, where does the time go? But it's so true. This whole year is like flown by. So I'm happy that we're all together, you know, just a chat about our unique position in ALS land and you know, kind of like what's motivated us to be in the space, and what do we feel like it's giving to other people and what is it giving to us? So let's go in for people that might not know everyone, like David and Allison, start and tell us about how you even got into our community, and then specifically a little bit about your podcast.

SPEAKER_00 7:28

Yeah, so I'll jump in and say how I got in the ALS community and then let David share. But um, ALS to me is per is a personal mission because my first husband, Corey Burrell, had ALS and he was diagnosed and passed away at the age of 35. He was a familial gene, so he had SOD1 ALS and was really incredible drug trials, but it's a personal mission to me because of that reason. And his father also passed away from ALS, and I have stayed in the fight ever since, which allowed me the opportunity to meet David, and uh I'll let him share a little bit about his story.

SPEAKER_01 8:11

Yeah.

SPEAKER_07 8:13

So my wife was diagnosed in uh 2018, uh sporadic bulbur onset ALS. It was pretty warm of it. Uh, within about six months, she couldn't even talk. And then we lost her in January of 2020. So that's how I'm in the community, and that's uh kind of how Allison and I met. Uh, we had the same situation around the same time. My wife passed about nine months after Corey and then didn't know Allison. We met afterwards and started talking, and one thing led to another. We started dating.

SPEAKER_00 8:58

I don't know if I lost you there, David, or not, but I think you know, the podcast was really driven out of my kind of jealous. I was jealous because David had a podcast with his best friend, and so they had a podcast about an RV, and I was like, Well, what do I know? All I know is ALS and work, and right, so I was like, let's do a podcast for ALS. And so we actually started this podcast on Angie's birthday, and it was a to kind of remember her, and I was just doing it because honestly, at the beginning, I was like, I want to be on a podcast. That sounds like fun. This is a great way for us to get the message of ALS out there to people. People listen to podcast, but it's been very it's it's it's very much a therapy for us as well. We get to share our story, we get to share about the person that we lost, we get to share the stories of other people that are fighting ALS, some really incredible warriors, and we get to talk about what we're involved in and what we see going on. And uh, we feel like it's just given us a platform to really help, you know, within our circle of influence, share more about ALS. And so yeah, our podcast, I lost my person. We were on your podcast previously, Lori. So thank you again for having us here.

SPEAKER_06 10:12

Um I'm a little jealous. I've only had one invite. What in the world?

Lorri Carey 10:17

Hey, everyone come over here if you haven't fingered in it now. I am solo.

SPEAKER_06 10:22

I'm kidding. I'm kidding.

Lorri Carey 10:24

I am solo I can slow.

Corey’s Day Job And Catching Up

SPEAKER_00 10:36

Give them that little that little motorized bike in your face and you can go, girl.

SPEAKER_07 10:42

Yes, you are not, you are not slow, Lori Carey. No way.

Lorri Carey 10:46

I I think what it is is I have a lot of ideas and a lot of stuff going on, and time wins out on me. That's when it is. Yeah. 100%. Yeah. So Corey, yeah, tell us about tell us about you.

SPEAKER_06 11:03

So mine's mine's a little bit of a weird story. I'd never had a thought to do a podcast. Um, after I was diagnosed, I didn't really know what to do or how I was gonna do anything after that. Even having like a family version of ALS, like I knew the ALS path, I knew how all that was gonna work out. My family never really talked about ALS a lot with like the kids in the family. I'm sure the adults talked about it, but like there was never really any conversations with us that I remember anyway. And after diagnosis, I had the opportunity to go to UFC 300, one of the ALS Association directors saw me in a video from the guys that took me to the ALS, I mean to the UFC fight. And was like, hey, would you like to come to ALS Association's very first Nexus conference and be a moderator? And I was like, absolutely not. Public speaking is not my thing. Um, you do not want me up there because number one, you don't know what I'm gonna say, and I'm probably gonna get one of us in trouble, either me or you or both. Um and while we were there, I met like their director of communications, and I kind of had the idea at that UFC event with a buddy of mine. I didn't know where I was going, what I was gonna do, but I knew I want to do something. And so I did some research before that and saw your podcast, saw um Allison and David's podcast, and was like, oh, this is really cool. And hey, let's put some video to it, let's let's show some photos or maybe like the folks we're talking to so people can see you know what it looks like. Um, because that was one of the things I noticed is you you see people fighting the fight up to a point, and then most folks kind of uh unlike a Brooke EB who's documenting everything, yeah. You see a lot of folks just kind of you don't see the worst parts of ALS and how bad it can get. And I remember like when my mom passed from it, just sitting there seeing her in that worst point of her life, right? And I was like, Well, you gotta I gotta show people this. So I met the director of comms. I was like, hey, I think it'd be really cool if we did a video-based podcast that can kind of show some of these people, not just you know, you can hear the voices, you know their strain, you know, you can see you can hear those kinds of things, but seeing it, I thought was like, this is gonna be powerful, right? And they were like, nope, we don't want to do it. And I was like, all right, cool. Um, then I'm doing it myself. So I went out, bought all the stuff, got microphones, headsets, soundboards, like, I'm gonna do this, you know, cameras. Um and then shortly after that, there one of the other directors reached out. She's like, Hey, do you really want to do this, Olga? If you guys know Olga with the ALS Association, uh, she reached, she's like, Hey, do you still want to do this? Absolutely, because I didn't know how I was gonna schedule people. Like, I wanted to make sure we're talking to researchers and getting the information that I didn't see readily available out to a place where somebody go to one spot, yeah, watch a couple of videos, figure out, hey, maybe this person is who I need to reach out to and talk to, kind of thing. Um, and we've been doing it almost two years now.

Lorri Carey 14:03

So oh my gosh. Yeah, uh, that's crazy. Yeah, yeah.

SPEAKER_00 14:09

It's really incredible, Corey, what you've built. Um I mean, it's not I didn't build any of this. Well, and in showcasing the visual aspect of it, I think when when you have somebody living with ALS and they're on a podcast, sometimes it's hard to understand them. But if you can watch them and you can take clips of it and throw it out on social media, I think it really elevates the conversation because, like your like your mom, like a lot of people as they progress,

How Alison Entered The ALS Fight

SPEAKER_00 14:40

they aren't in front of a camera and people aren't seeing them as often. And so they think of ALS as okay, well, they have some limited mobility, right? But ALS can take so much and take so much differently from everybody, different, it's just such a weird, unique disease. And so um I think it's really cool what you've done.

SPEAKER_06 15:01

Yeah, for sure. I mean, sure. I will give the ALS Association a lot of credit. I know they get some grief sometimes from folks, but they've they pretty much like I just host it, I don't have to do anything else. I'm not worried about getting people. I mean, I'll I'll suggest guests and we'll bring people on, but for the most part, they handle everything else and it's made it super easy.

SPEAKER_00 15:23

That's cool.

Lorri Carey 15:24

Uh that's nice. Oh um, yeah, it's kind of funny because when I decided to do my podcast, I'm not even telling you, I was in my 15th year of living with ALS, and I was like so grateful for all the extra bonus years, and you know, it was kind of a milestone, like 15 years. And I was like, what can I do with the time that I've been given? And at that time, and it's crazy because I look back at photos like seven years ago, and I have this amplifier around my neck. I was using an amplifier a lot if I was out to eat or you know, in a group of like six or more, it was hard for me to be heard. And I started praying about what to do, and this podcast kept coming on my heart. And I'm like, why would I do a podcast? When in my mind, my voice was starting to fail. And I'm like, uh no, no, no, no, no, no. And it kept coming back, kept coming back, and then I was like, okay, I'm gonna do this, and I'm gonna go into the mindset of opportunity over perfection, and it might not sound perfect, and as I go along, it's gonna sound uh worse or be harder for me to do, but ironically, I mean I like I'm a little winded right now because I'm having taken a breath here, but my voice is stronger than it was when I started, which was literally the day that the world shut down because of COVID. That day, March 13th, 2020, was my launch party. That's wild, and I had to make the decision to cancel it.

SPEAKER_06 17:35

Yeah, it's a great time to start it though when everybody's trapped in their house with nothing to do.

Lorri Carey 17:39

Yeah, well, yeah, but at that time I didn't know like I didn't know how to record virtually, I only knew how to do it in person, and I had already done a few of them right here, and then I'm like, oh no, now what? But then I figured it out, and then it kept me occupied while I was here, you know. But I love that we all had inspiration to continuously share our own story and to help other people who are number one diagnosed with ALS and are like, now what? And then not only that, but these outlets, these podcasts that bring people in to our community because they are all examples of resilience, strength, hope,

David’s Caregiving Story And Loss

Lorri Carey 18:40

you know, how to overcome what is ALS, what is the icebucking challenge, where is the research? How do I get involved with all the things? You know, back in 2014, we had everyone's attention, and now we have the opportunity to continuously bring people in to the community. Like, what do you guys what have you guys seen about that or what you've been able to give through your podcast?

SPEAKER_00 19:16

Oh, that's a good question. So I I would say that one of the things that I like about podcasting is a way to kind of dive deeper into some of the things that I've seen to be impactful. There's so much knowledge out there around ALS, and there's so many resources. And so sometimes it can feel very overwhelming for somebody that's just recently diagnosed. Oh, for sure. So overwhelming that they don't they shut down and they don't know what to do, right? And so um kind of just making it more of an enjoyable space to share fun memories and to share great good stories and then to remember really incredible people. I think that's been like for me personally, that gives me hope when I can talk about the hope that I see. And like the winter time is the time where we tend to lose a lot of pals, right? So it's during those months where people easily catch pneumonia and then they can't get out of the hospital, and it's like one after another after another, and it can feel really depressing. Or all the funding got taken away for something, right? And that's very depressing. And you get on social media and you see negative comments. If we can just provide some glimmers of hope and some positive things of what other people are doing, it may not be huge stuff that they're doing, but I think that we are able to be the voice of so many people that have lost their voice. And so, Lori, your comment about your voice is incredible because I think your voice has gotten stronger. Uh, and if just a little tip to all of the listeners, if you listen to Lori on like a 1.25 uh a little bit faster, she sounds like she used to sound. And so me, that's what me and David do. Um, and so you've been given the gift of being able to use your voice continuously, which is incredible. And we want to be the voice for the people that have lost their voice. Yeah, but we also want to be able to be there to provide the little glimmers of hope, as they could be something as small as a lemonade stand. It doesn't have to be a huge breakthrough in research, but if we can provide some hope, I think that's been the biggest thing for me, the biggest takeaway.

Lorri Carey 21:32

Yeah, and I've got to say that I tell people about your podcast that have nothing to do with ALS, because everyone at one point will lose their person. And one thing I've learned by doing this podcast for like seven years now is that people are still uncomfortable. Talking about their person. There people are also uncomfortable going to someone and talking about their person.

Starting I Lost My Person

Lorri Carey 22:10

I mean, you know, with should we mention them? Yes. Freaking mention them.

SPEAKER_03 22:16

Use their hand.

Lorri Carey 22:17

Yeah. And so you guys give the absolute permission and a beautiful example. Talk about the people that we lose. No, I mean, David, right?

SPEAKER_07 22:32

Yeah. So our podcast is basically a tribute to Corey and Ange. I mean, the people that we lost. And uh, we always tell we always tell everybody that there's four people in our marriage. There's Alison and I, and then there's Corey and Ange. And they're just part of us. And yeah, we talk about them daily. Uh, we try to keep them central in our lives. And this podcast is just basically a way for us to keep that going. And, you know, I hope it gives some other people that are still around after the person that they've lost, you know, it gives them hope that they can go on and you know still find still find joy and happiness in their life. And if we if we can be an example, I think we say it in in the opening line of our podcast, if we can just help one person, then that's that maybe.

Lorri Carey 23:22

So yeah. Yeah, I love that. I love that so much. Corey, what is something that you see that you're able to give or something that you're getting back?

SPEAKER_06 23:34

I I've said this a few times, I think, on the podcast. It's selfish for me.

SPEAKER_01 23:39

Oh, yeah.

SPEAKER_06 23:40

I I needed an outlet to talk about this stuff. I have you know, family members that were diagnosed after me that I I can talk to, but I think one of the things that I've gotten out of it is just the people I get to meet that are still doing really awesome things in spite of this terrible disease. Yeah. Um and like a couple weeks ago we shot one, it hasn't come out yet, but I think it comes out next week or the week after, uh, with um Dana Hunt with Adaptive Impact.

SPEAKER_01 24:11

Yeah.

SPEAKER_06 24:11

And it's like, you're a freaking rock star, dude. Like, I'm never gonna be a Dana Hunt. I'm not jumping out of airplanes, I'm not skiing down a mountain, I'm not paragliding in San Diego. Like, I'm not I don't want to do that crap.

SPEAKER_03 24:23

I love that.

SPEAKER_06 24:24

But hey, if you've got people that want to do it and you've got a way to help them do that and you can show them that, hey, this ain't this is not a it's not something that's gonna stop you living if you really want to get out there and still do wild stuff, you can. There's places to do it. So I think that's it for me. I'll it'll start off selfish, and then I've gotten to meet some really awesome researchers that are doing cool things. We talked to a lady the other day, it's been a couple weeks back in Australia that's working on um biomechanical uh prosthesis, and just some of the stuff that they're doing is wild. Yeah, and you would have never I'd have never talked to those folks, yeah, exactly.

Lorri Carey 25:04

Or maybe even been interested or zeroed in on that topic, yeah, and now you're like, hmm, interesting. I love that Dana Hunt. I think we should have a t-shirt. I'll never be a Dana Hunt, however.

SPEAKER_06 25:16

However, I'm glad she's doing what she's doing because it's certainly.

Lorri Carey 25:23

The podcast has ended up being a blessing to me. I've met so many people, and I feel like every episode, there's a nugget that I learn that sticks with me every single day. And you know, I'm dying to tell you that that whole title even came about. Like I had so many people who it was like, you know, Adana Hunt or Andre Lionel Pete, or who I'm dying to tell you about this person that I'm witnessing living so fully and so deeply in the worst possible part of their life, and then it's one after another, one after another, one after another. You know, so I know uh a lot of people ask me this question, and you got okay, here's the deal. I talked to Andrea Pete last night, and I told her what we were doing today, and she of course started laughing, and uh, I said, What's so funny? She goes, Who's gonna be the host? So if you guys have a question, uh, throw it back. You know, anything, we can keep it that way. But um, a lot of people ask me, what has been your favorite episode? And it's really hard to answer because it depends. What are you looking for? You know,

Corey’s Diagnosis And Podcast Origin

Lorri Carey 26:50

what do I need in that day? What do I need in that moment? But I do have one that sticks with me every day, and I'll tell you about it after you guys tell me what your either your favorite episode or your most impactful or most memorable. I'll put you on the spot.

SPEAKER_06 27:13

I know mine if y'all are if you guys aren't ready.

SPEAKER_00 27:15

Yeah, go ahead, Corey.

SPEAKER_06 27:16

All right, mine is Sonny Browse. If you guys know Sonny Browse, I got Sunny on the podcast, and I met her for the first time at the very first Nexus conference for the ALS Association. And we had a little um we had a little section where like all the patients got together, we're doing a little, you know, kumbaya circle, and we get done, and she just like like comes right up to me. Hey, my name's Sunny. I'm with her ALS story. She tells me a joke that I'm not gonna ruin your podcast with. Um, but she has given me personally more intention in the podcast, just how she's handling it in her little small town in Texas. And like I got she invited me to a birthday last year or this year in February. It's a little small town Hico, Texas. If you ever go Sunny, you'll see her rolling around. Um, and it she has has got to be the most is what I'm looking for. Caring, like she checks on me, you know, like stuff like that. It's just I don't know. That if the world had more sunny browses in it, we'd be in a better spot. You know what I mean?

Lorri Carey 28:32

Yeah, I think she was appropriately timed.

SPEAKER_06 28:35

Yeah, oh yeah, 100% appropriately timed. Like I needed to meet a sunny browse that day for sure.

Lorri Carey 28:41

Oh, yeah, yeah. Uh I love me some sunny. And yeah, same. She she is just one of those people that you can count on to lift you up every time. Yeah, every time. Yeah, that's cool. All right, I lost my person people.

SPEAKER_00 28:59

Uh David, do you want to answer this?

SPEAKER_07 29:02

I I was just looking at the screen going through all of them. Yeah, my initial response, Lori, would be the last one. But uh every time we get to do one, I just enjoy myself so much. Yeah. And I think I think Allison and I both surprise ourselves by how much we enjoy it because we're we're sitting down for an hour and talking about our lives, talking about people with ALS, and that's you know, that's both of our passion. And but if I if I can pick one, I'm gonna go with September 25th of 2023. It's called Hurt Feelings and Ice Cream. And uh I was being kind of silly in that episode, and um I I was eating a lot of ice cream to drown my hurt feelings about my Minnesota Vikings.

Lorri Carey 29:57

Yeah, change our life event went down.

SPEAKER_00 30:02

Uh yeah, and to piggyback on David, I just think all of our episodes are so different, but we're able to share a memory of Corey and Ange on each one. So they're each impactful and meaningful. I mean, we have shared so many people that are living with ALS and that have passed from ALS and so many fun stories of our journeys, you know, our journeys with you, Lori, our journeys with Andrea. Um, but I don't know that they're for us is like really one. They all have a little bit of grief, they all have a a lot of hope.

SPEAKER_01 30:41

Yeah.

SPEAKER_00 30:42

And it's like you laugh and you cry, that makes for a really good day, right? And so our episode always makes me laugh and it always makes me cry. And um, yeah, that's what I'm thankful for.

Lorri Carey 30:57

Yeah, yeah. Mine is the conversation that I had with Mitch because it is so universal. And I really got an inside track on Maury Shorts and the life lessons that he taught Mitch, you know, at the end of his life. And if you don't know the story about Tuesdays with Maury and how that even came to be, it was not even supposed to be a big book. It was something that Mitch was doing with Maury to help him pay his medical bills. He thought like his family would buy it and his friends, but the life lessons that Mitch described that Maury taught him have stuck with me. Living is giving. Living is giving, like and love is the biggest action out there, and nothing else is important. You know, if you live by love, everything else doesn't matter. So yeah, and many of them in that episode, and not only getting to share Maury's perspective in his last weeks, but how it's influenced Mitch and how he is as a person, and he has like adopted 56 kids in Haiti, has an orphanage there, and tons of charities in Detroit. Like he's really taken what he's learned and put it in action, which I think is so so amazing.

SPEAKER_00 32:46

I love that. Lori, that was a book I read. We it was required reading in high school. Corey, I don't know if it was for you or not, but I had to read that in high school. I vividly remember reading that book. That was my first introduction to ALS, like knowing what it was. Didn't really know what it was. I would say 98% of the people living with ALS and that we lose kind of mindset that Maury does, right? They're very they become very intentional in who they are and what they believe.

SPEAKER_01 33:15

Yeah, yeah.

SPEAKER_00 33:17

I experienced that with my Corey, and I know David experienced that with Angela. And I think it's like that's such a great book on how you should live your life, regardless of if you have ALS or just you're living your life normal.

Lorri Carey 33:29

So yeah, yeah. I mean, the book really isn't about like that.

SPEAKER_00 33:33

Book is truly a gift, that a gift to us, yeah, yeah, yeah, yeah.

Lorri Carey 33:38

Um,

Showing ALS On Video For Impact

Lorri Carey 33:40

guys never forgotten to turn on the microphone so many times. Oh no, like no, have you done an entire episode and not turn the microphone on?

SPEAKER_00 33:55

Do you think David Stanley has made that mistake? Come on, Lil. No.

SPEAKER_07 34:01

We actually we we we wear headphones uh also like you guys are doing right now. We wear headphones during ours, and yeah, it I've never forgotten to turn the uh hit the record button either.

Lorri Carey 34:15

So yeah, I have forgotten to know that once.

SPEAKER_07 34:19

Yeah, we call ourselves the one take wonders.

SPEAKER_00 34:23

I love that. I love it.

SPEAKER_07 34:25

Minimal minimal editing.

SPEAKER_00 34:27

Usually, usually the cat gets in the way and he tries to get in the middle of the episode, but other than that, um Yeah, he's he's sitting right here to my left off camera right now.

SPEAKER_07 34:39

Like he's gotta be right in the middle of everything.

Lorri Carey 34:41

So things you don't see. Well, you guys have a mask on, so that's pretty cool. There you go. Hey, you guys have a question?

SPEAKER_00 34:51

A question for you. Let's see. What's a good question for you? What's been for everyone? For everyone. Yeah, yeah, yeah, yeah. For everybody. Um, what's been a mistake that you've made? Like, I love to learn from other people's mistakes. So, what's been something that you have been like, I'm not gonna do that again?

Lorri Carey 35:14

I think mine is like just typical podcaster one-on-one mistakes, and in the early years, being overly prepared and nervous and nervous. Like even in the Mitch Album episode, when I listened back to that, and I have because I love I pull quotes from there, I I can tell I'm so nervous, you know, and just like so I don't know if it's a mistake, it's just an evolution thing. And I think in the beginning, of course, I was so nervous, and I wanted to be just so good that I overly prepared, and now it's so much the output, you know, the content is so much more raw and honest without being prepared. And so, yeah, that's what I would say.

SPEAKER_00 36:12

Over being over prepared. I think that's a good, that's a good like mistake. We we've sometimes done being over-prepared on the and you lose the authentic authenticness, authenticity, authenticity. There we go. Please add it all together now. You lose you lose the passion behind it when you over-prepare, and you and we find passion through the things we care about. We don't need to be over-prepared for something we live every day, right?

Lorri Carey 36:43

Exactly. Right. Yeah, yeah. Anything different.

SPEAKER_06 36:49

Uh, so my biggest failure would be the first episode of the podcast. Um, so uh the first one we did was with the two cousins of mine that were diagnosed within like three, four months of me. And I normally shoot the podcast at my office. I left my badge to the office sitting on my desk and went to go to the bathroom and got locked out of the office, had everything set up, ready to go, and couldn't get back to the podcast. And then all building security to let me into my office. And then when I got there, I'd hooked up the microphone to the wrong jack on the recorder. I'd hooked the ear, the headphones into the wrong one. No one can hear me. I'm freaking out because I'm I want this to be the thing, right? Like, this is gonna be great. It's my family, it's gonna, you know, and no, it took me 30 minutes to get back in the office, so that's hilarious, and then you're all watching our biggest mistake.

SPEAKER_00 37:47

That's a good story.

Lorri Carey 37:48

You know, we're all gonna come back now and watch that.

SPEAKER_06 37:51

No, I was I was sweating, and you could see it. Like, if you watch the first episode, you can see it. My face is red, there's sweat dripping down my forehead. So I'm trying to make a good impression, you know. Nope, nope.

SPEAKER_00 38:01

Oh, I can't wait to watch it again.

SPEAKER_06 38:03

Yeah, you'll and like half the microphone like quit halfway through, so we're using the camera mic to try to pick me up so the audio is terrible to me because I want it to be perfect, right?

Lorri Carey 38:13

Yeah, yeah, yeah. Right, right. In the big scheme of things, you realize no one cares.

SPEAKER_06 38:19

You know, I mean, I think a hundred people watched the first ones, and half of those, I'm sure, were my family.

SPEAKER_00 38:26

Oh, anyone else have a question? She had something

Lori’s Podcast Leap During COVID

SPEAKER_00 38:30

about the the unexpected friendships you found through ALS and through podcasts, too.

Lorri Carey 38:36

Yeah, yeah.

SPEAKER_00 38:37

And I think this is a good example of those unexpected friendships, like you know, yeah. Oh my gosh. We all know each other that we're all connected through ALS, but there's so many people with ALS, and I feel like we're the common denominator here is really we we all have a passion for sharing stories and sharing stories about people and sharing stories about hope. And um, I I have just been so incredibly thankful for the friendships that I've gained through this journey and the ability to share some of my story.

Lorri Carey 39:08

I agree for sure. And just got back from ALS TDI's Tri-State Trek, as you know, with Andrea. And you know, a lot of people there just I've been connected with through the podcast, and so it's really good to see them in person and or to see them again in person, and you know, even you guys and being able to share on your wedding day, and so it's good, you know, there really is something powerful when you have someone that understands exactly what you're going through, but you don't know what you don't know, and so even your best friend or your spouse might not understand unless they have you know physically been in that uh space before. And so, like one of the questions, um my two sons interviewed me in an episode, and one of the questions they asked me was oh, is when I hit my 20-year mark with ALS, they said, Mom, what is something about ALS that after 20 years we might not know? And I said that it is on your mind 24-7. Like you cannot escape it. Corey, I mean, you gotta feel something like that, or do you?

SPEAKER_06 40:50

I mean, for me, it's a little like I think I've said this this before, and I think I may have said it to you guys that night, but to me, I I actually feel a little guilty about my situation because a couple of reasons. The first reason being I know what's coming. I've watched 25 or not 25, but we've had 25 members of my family in four generations that's had it. I know what it looks like when we get down the road. The sporadic folks, it's hitting them out of nowhere, you know. So I feel guilty about that. I've I feel guilty about us being long progressors in my family, and all I mean, every single person that started in their legs, and most people average for my family's eight to 15 years without Cal Sadi, right? We don't know what it looks like with it, but so far it's been doing well for us. And there's this weird like guilt that sits in there of I know what's coming, I have a treatment. And it's weird to have to think about that on top of thinking about, well, what if the treatment stops working, or there's you know, there's a chance of chemical meningitis with the treatment because they're going into your spine. So if I do have to stop, how's that mentally gonna be? You know, so I think that those are the things that weigh on me the most. And and that's why I said earlier, like the podcast is for it's for me selfishly, because it allows me to get all that crap off my chest. And I also feel guilty because I've got a I've got a cousin who's I think a month younger than me that was diagnosed a month after me. We've lived the same experience for most of our lives in this family. So I've got another cheat code over here that a lot of people don't have. I can talk to this guy, he knows exactly what we went through as kids. He saw the same aunts and uncles and cousins, and it it feels it feels like a cheat code.

SPEAKER_00 42:41

You guys have your good internal resources available because you've already lived a lot of it. Like you get these people that are caught completely caught off guard, diagnosed with ALS, they may not even know what ALS is, and yeah, um young, young families, even older people, and that have no idea where like my frustration sometimes is there's so much information that's good out there, but it's all scattered. And you get young people that are just searching for information and they get so overwhelmed. And because there's just so much, it's like a fire hose coming at them, and they just need a trusted person to listen to and talk to, and maybe we can be that voice for them. Um, maybe Lori sharing the things that she shares and you sharing the things that you share help them build trust in you and that they can reach out to you. That's all we want to be. We want to be connectors and we want to be a support for those that are living with it.

SPEAKER_06 43:42

It's one of the things I've done at the local clinic and and even the clinic that my family uses back home. Like, hey, if you ever have somebody that needs to talk about this crap, like give them my name and number. Like, I don't care that you share my name and number, give it to them. I'm happy to talk about them, hook them up with some resources, do whatever I can to get them the info info they. Need because like you know, 10 years ago my mom passed away with it, there was nothing, and now it feels like there's so much that, like you said, Lori, it's a fire hose. How do you parse all that data? And everything, especially on the research side, is so technical. Like, dumb it down, you know. I'm a dumb redneck from the mountains of North Carolina. I need you to dumb this stuff down for me. And if I'm the person that could dumb it down for somebody else, hey, great.

SPEAKER_00 44:23

Yeah, yeah. And then we see things, we see things like like calls, right? That's that's helping those with SOD one. And people are like, there's there is something. So do they turn their people that don't have ALS, are they saying, well, there's something

Hope, Memory, And Giving People Permission

SPEAKER_00 44:40

out there? They just don't they don't know Plex Day's journey is a little bit different. And so if we can help be a voice for that, I think that's really important.

SPEAKER_06 44:50

For sure.

Lorri Carey 44:52

What is something that y'all have learned from your listeners?

SPEAKER_00 45:00

From so for our listeners, are probably a a little bit of a different mix than maybe yours or Corey's. And I think our our listeners just want to hear our stories and want to hear the memories that we have to share. At the end of the day, they don't care if it's a polished cast, they're okay if we go dark for six months. Um but they want they they whenever we do put an episode out, our loyal listeners always say, like the next day, I just listen to your podcast, it's great. Um, they really like how we share information on what's on what's going on in the ALS space and how we share stories. Uh David, would you add anything there?

SPEAKER_07 45:42

Or but I guess just what I've learned is I'm just surprised how many people are interested in a story and um you know, and how I'm not gonna say it helps people, but how I mean they just they look forward to it and they notice when they notice when you haven't done one for a while. And you know, we have hands of coming out with a regular case right away, and you know, life happens, and it's just really release one every other Tuesday, and that's that's advice you gave me, Lori. And I I tried, but wow, it's like you know, getting getting us together and and our business do it. Uh it's it's a lot of work, and it just doesn't happen sometimes. But what I've learned is that people really appreciate what we're doing, and and that makes me feel good.

Lorri Carey 46:32

For sure. I know I gave you that advice, and then here I am like I can't even do a little anymore. It's hard. Corey, we don't have people, we don't have people editing and all that.

SPEAKER_06 46:46

And hey, I look, I I asked they said yes eventually. I don't know what to tell you. I mean, I like I'd already shot a podcast in preparation just to set myself up for the editing process and how I'm gonna do all these things. I shot one with that cousin I've talked about a few times now, and it was literally I was sitting at home editing the first episode that I was gonna release under the name that I chose, and that was when I got the text message, and it was like, well, yeah, because I'm figuring out this is you know, this is a lot, I'm not gonna be able to do this work and you know, shoot a podcast on top of that. So it's it's been a blessing to have that help.

Lorri Carey 47:23

Yeah, that's cool. If someone asked you about your podcast and what value it can be to someone in our community or outside of our community, what would you say?

SPEAKER_00 47:43

For I think for I Lost My Person podcast, I would say that the value that we try to provide through our podcast is really that of hope and joy. And it's it's um hope that we can find a cure for ALS and that we're a community and we're staying united together in the fight, right? And then the joy that you may lose a spouse, you may lose a loved one. Grief is gonna be part of everybody's life at some point along the way, but you've got to keep finding the joy, and you've got to keep, you know, making life present and being part of life, and um not you can carry that person with you no matter where, you know, if they've passed, you can they can still be part of your life, still part of your memories, but you've got to be present in your life and and really carry through with that joy. And and it's important to it is important to us that you speak about that person, right? And so, you know, I was thankful to be alive. My great my great-grandparents were alive when I was a child, right? And so I know a lot about my family history because they spoke about the loved ones that they lost. My parents have spoken about their parents, and I wanted to do the same for my late husband. I want his kids to really understand who he was. I want uh David's kids to understand who their mom was as an adult, right? And so um I think it's important that we just share their name. And so the journey of grief is a really tough

Most Impactful Conversations And Favorite Moments

SPEAKER_00 49:20

journey. It's really hard to lose someone, and it's really hard to lose someone to ALS, but I think hope and joy are the two things that I personally want everybody to leave the podcast knowing that you know there's hope and there's joy.

SPEAKER_03 49:36

Yeah. David, anything?

SPEAKER_07 49:41

Well said, Allison. Um, you know, I I I guess if I could summarize our podcast, it would be, you know, moving forward. It means that you still can look back, and that's kind of what we do. We're moving forward and we're blending two families, and we're continuing to work and move on with our life. And we we have a pretty good life. We we we chase joy, we have a lot of fun, uh, but we also grieve and hurt, and that's just part of our lives. And the two can coexist. You know, I just want to give hope to people that are living with ALS, that have lived with ALS, you know, not just the the people with ALS, but the caregivers and the spouses and the you know, the parents and the you know, everybody has, you know, when you have somebody with ALS and you lose them, it's painful, and you can still move move forward with joy and and still look back and remember them.

Lorri Carey 50:41

And it's okay. It's okay to do that, it's okay to move forward. And I love how you guys do it so naturally and so personally, you know, people get invested in your lives and what you're up to, and so it's really honest. And I think a lot of people connect with you because you open up that door to your life, and that's it's great. Thank you. Yeah, Corey.

SPEAKER_06 51:14

Um, it's called ALS Matters, like I said earlier, Dumb Redneck from the Mountains of North Carolina with a microphone talking to people he has no business talking to.

Lorri Carey 51:22

That's an awful long title.

SPEAKER_06 51:25

I know, right? Um, I would say if I had a hope for the podcast, it will be kind of like Alison and David said earlier. I just hope if one person gets some information that helps them through, yeah, then I'm happy. I mean, we've we've talked to folks that are fighting insurance companies, we've talked to folks that are doing really interesting research around ALS and how it affects you. And you know, it I wouldn't say we focus on one thing or the other. It's just kind of everything that touches the ALS world. Yeah, there's a good chance we probably have interviewed somebody that's gone through what you're going through.

Lorri Carey 51:58

Yeah, yeah. I love that. And what I'm trying to tell you at the end of every episode, I say you are loved and not alone. So that's what I hope for my community is that they really know that. Because over 22 years with ALS, I have seen that having a community is a luxury, having a community is healing, and not everyone has that. It's really hard to imagine that people would opt out after their person is diagnosed, but it happens again and again, and so for people to have somewhere to go to to listen in to other people who are in all of your points finding hope and joy in the middle of the darkest times is absolutely everything. You are loved, you are not alone. So if you listen in, which I know you all do, I always ask, what are you dying to tell us? So, Allison, what are you dying to tell us?

SPEAKER_00 53:25

Of course, you would let me go first on this one, and this has nothing to do with me, but I am dying to tell you that the ALS Ice Bucket Challenge is back, and it has been so inspirational to see all of these individuals surround. Yeah, look at that koozie Corey has. Wait, wait, wait, wait, what's the koozie? What is it saying?

SPEAKER_06 53:47

Uh so Chris Johnson went to East Carolina and was one of our top running backs in the early 2000s while I was at ECU and I got to watch him play. Um, and it's been uh um wow trying to get ECU to partner with us on some stuff. So I'm pretty excited about that, but I'll shut up because that's not official yet.

SPEAKER_00 54:05

Okay. Okay, Alan's then going. So that's so great. So I'm just I'm dying to tell you that we have, you know, I hate that Chris Johnson, like Corey was in finishing up school when he was the player. Corey loved Chris Johnson as a player, he was an incredible athlete. And this is another opportunity for us to bring so much awareness to this disease and highlight an incredible person and the way he's come out with his family. It took a little while for them to come out about it, but the way they've come out and the way that NFL communities rallying

Podcast Mistakes And What Listeners Teach

SPEAKER_00 54:40

around behind him is inspirational. And it's like the it's like the reinvigoration that I needed. Like that it's like the start button got pushed again. Like, let's go. I'm so ready. And I hope that this continues to bring more funding towards research and more awareness to families of diversity, right? Families, young families and athletes. And and and we've got to figure out why the athletes are getting ALS like they are. But I think I'm just dying to tell you that ALS ice bucket challenge is back. Go on social media, you'll see it everywhere. Steve Gleason had a bucket of ice dumped on him. So that is it has nothing to do with me, but I'm just dying to tell you that I think we're back, baby.

Lorri Carey 55:27

I love it. I love it. I know I saw that video with him and Brian, and I'm like, oh, that was good.

SPEAKER_00 55:33

That was do you imagine how cold that was for the two of them?

Lorri Carey 55:36

Like, and then it was hilarious because they were totally naked, 100% naked, with a little with a little towel down below, and Steve's towel got moved when all the water came on, and then everybody was rushing in. It was like a cold plunge, yeah. For sure, for sure. Uh David, what are you dying to tell us?

SPEAKER_07 56:02

I'm dying to tell you that ALS uh hit me like a ton of bricks, hit my family like a ton of bricks, and devastated us. But in that whole experience, I met some of the most beautiful people because of ALS in my life. My current wife, we never would have met without ALS, Allison, uh my friends, Lori, Andrea, Sarah Nauser, Corey. Uh, so many, I'd like there's so many, uh, too many to name, but they're all just beautiful people. And so in every terrible situation, there can be blessings. And I guess that's what I'm dying to tell you.

Lorri Carey 56:52

Oh, so true. So true. Uh Corey, what are you dying to tell us?

SPEAKER_06 56:59

It feels a little corny, but I'm gonna say it anyway. Um I'm dying to tell you that you never know what's going on in someone's life. Meet people with grace and don't judge too quickly because life is one hell of a thing that it can throw you a lot of curveballs. And I feel like, and I think this podcast is a great example. You never know what somebody's going through. Yeah, and you might have met them on their worst day and you not know it. You might have met them on their best day and you not know it. But meet people with grace and have some love in your heart, be patient.

Lorri Carey 57:39

Yeah, I love that. That's incredible.

SPEAKER_07 57:42

That's great.

Lorri Carey 57:43

I'm dying to tell you to check out the links in my show notes to I Lost My Person and ALS Matters, and to Nana being a part of their beautiful communities as well. So thank you all for being here and for doing this. It was fun. Thank you, Lori, for having us. Yeah, happy nanny again.

SPEAKER_00 58:08

Appreciate thank you for guys for what you guys do. Your podcasts are both incredible. Um, maybe a little bit more consistent than us, but yeah. Thank you for for having us on and this opportunity to share. And hopefully we can get together soon.

SPEAKER_01 58:22

Yeah, yeah. Absolutely.

SPEAKER_00 58:24

Thank you again for having us. This has been awesome.

SPEAKER_06 58:27

And good seeing you, Corey. Y'all too. We need to do it again.

SPEAKER_00 58:31

Yeah, let's get next time Lori's in this in North Carolina, we'll all get together.

SPEAKER_06 58:37

Yeah.

unknown 58:38

Hopefully.

SPEAKER_00 58:38

All right. Well, thank you guys. We'll talk to you soon. All right, all right. Bye.

SPEAKER_07 58:42

We'll see y'all. Bye.

Lorri Carey 58:49

Um, I'm gonna get this conversation. Has been Allison, David, Corey. Thank you all for not only your friendship, but also for all the incredible work that each of you are doing to help amplify the voices of

Ice Bucket Challenge Returns And Final Takeaways

Lorri Carey 59:10

our community. And I'm just so grateful for each of you and what you bring to all of us. So, to my listeners, if today's conversation introduces you to one of their podcasts for the first time, I really hope you'll go give them a listen. Their voices and perspectives and the stories that they share are making a real difference. Thank you for spending this happy hour with us. Whether you're living with ALS, loving someone who is, grieving someone that you've lost, or simply looking for hope and connection. I'm so glad you're here. If you are listening into I'm Dying to Tell You for the first time, you can follow on social media pretty much everywhere. Uh Facebook, Twitter, Instagram, LinkedIn, and even TikTok. All at I'm Dying to Tell You podcast. Until next time, know you are loved and not alone.

Christian Carey 1:01:03

Thank you for listening to our mom. Make sure to visit her website at I'm DyingTotellYouPodcast.com, where you'll find photos and show notes about this episode. If you like the show, please subscribe to the podcast and share it with your friend. Thank you.