I'm Dying to Tell You
I'm Dying to Tell You
Happy Hour with Her ALS Story and "Hop" of Zac Brown Band
In this Happy Hour Chat, I talk with Tina Cascio, Mira Hudson and Kelly McGinn, all young women who share their journey living with ALS after being diagnosed in their 20's and 30's. John Driskell Hopkins of Zac Brown Band who is also battling ALS joins the conversation too. We discuss finding community, maintaining independence, and embracing joy despite a terminal diagnosis. Tina has familial ALS with the SOD1 mutation and has been living with it for nearly five years. Kelly was diagnosed two years ago and is balancing motherhood and ALS. Mira had symptoms since age 14 but was misdiagnosed for years before her ALS diagnosis at 24. John (Hop) continues performing with Zac Brown Band and will play at the Sphere in Las Vegas in December. The ladies share their fun experience attending a retreat in Cape Cod with 40 other Her ALS Story members. I love how they each emphasize the importance of community over isolation when battling this terminal illness. Follow Her ALS Story and witness the incredible strength of this group. Join John Driskell Hopkins for Harmony for Hope on October 18th in Atlanta, a fundraising gala for ALS research featuring world-class singer-songwriters in an intimate format. Thanks for listening and sharing with a friend. Hugs, Lorri
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Hey, I'm Paul.
SPEAKER_02:And I'm Christian.
SPEAKER_00:Welcome to I'm Dying to Tell You. Inspiration shared by our mom who is dying from ALS.
SPEAKER_02: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.
SPEAKER_00: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.
SPEAKER_04:Hi, I'm Lori, your host of I'm Dying to Tell You. Thank you for being here. If you have listened in before, thank you for coming back. And if you are a brand new listener, welcome, welcome, welcome. I'm so happy that you're here as well. If you've been listening in, or if you're a part of the ALS community, you probably know about her ALS story. It is a group of young women who have been diagnosed with ALS, most of them before the age of 35. Their spirit, their community is really something special and simply a lifeline for so many of these young women being young and living with a terminal illness. Every one of them inspires me in some way. And so today I'm really happy to be sitting down with a few of them. They recently got together and went on a trip. So I can't wait to hear about that. And we're just gonna catch up. This is my very first edition of a happy hour chat design just to catch up with each other, ask some questions, see what's going on, and really illustrate how even living with ALS, you can have joy and laughter and fun in your life. And to mix it up today, I have someone jumping in to surprise the ladies and be a part of the conversation. So I am super grateful for that as well. So my guest, three young ladies, diagnosed in their 20s and their 30s, all active members of her ALS story. And I'm gonna let them introduce themselves. But um, I'm gonna be talking to Kelly McGinn, Tina Cassio, and Mira Hudson. So I'm gonna go ahead and jump on Zoom, connect with the ladies, bring in the surprise co-host, and get this happy hour started. Okay, let's go. Hello. Hello, hello. Nice to meet you, Tina. Hi, Mira. Good to see you again. Good to see you again, too. Yes my husband made me a little, a little drink. A little frozen margarita. Yeah. So this is uh the first edition of a happy hour chat. And I actually have another her and list story member as a surprise co-host. So I love that.
SPEAKER_07:Surprise co-host? Oh my god!
SPEAKER_06:That's amazing.
SPEAKER_07:Oh my god, that's great.
SPEAKER_04:Hi, hey Chicos and our honorary member of her ALS story, love that, John Drescell Hopkins. Hey, thank you for coming on.
SPEAKER_05:I'm happy to be here. Thank you for inviting me.
SPEAKER_04:Yeah, and how did you get to be an honorary member of this special club?
SPEAKER_05:I don't remember the first time I jumped on a her ALS meeting, but it was probably a year ago or more. And then we go and got a hangout in um New Orleans at the Glee Single.
SPEAKER_04:Oh, okay, okay.
SPEAKER_05:That's when I was initiated.
SPEAKER_04:Uh shouldn't we even ask about the initiation process? Or that's probably top secret, right?
SPEAKER_05:I've still got the burn marks.
SPEAKER_04:Oh.
SPEAKER_06:I think the initiation process is just a shot of tequila, isn't it? It is.
SPEAKER_05:So you met that mine was on fire.
SPEAKER_06:Oh.
SPEAKER_05:And that's when I got burned. Oh.
SPEAKER_04:Oh my gosh. Hey, let's introduce everyone is introduced themselves real quick.
SPEAKER_05:Full disclosure. You guys are part of my up on a cure documentary right now. We have a camera crew over here.
SPEAKER_04:Oh, well, hey.
SPEAKER_05:Anyway, let us know when the pillow fighting starts.
SPEAKER_04:I'm gonna pivot and uh make sure you capture that. Hey Tina, why don't you go ahead?
SPEAKER_08:So I'm Tina. I'm from Chicago, Illinois. Diagnosed with familial ALS in 2020. Um, I'm the third in my family. Just still living life, having a good time. Every moment of every day. Yeah.
SPEAKER_05:So familial, I mean, are you SOD1?
SPEAKER_08:And and I won't have to person and it gave me spinal meningitis and almost killed me. I'm unfortunately the small percentage that it doesn't work for.
SPEAKER_05:I mean, the smallest percentage of the smallest percentage can even use it, and then you're an even smaller percentage that can. Yes. Aren't I that lucky? I mean I was gonna say I never met an SOD1 until you.
SPEAKER_08:Well, it is a great pleasure to be your first.
SPEAKER_04:You're always gonna be special. Uh Kelly.
SPEAKER_05:How do you feel otherwise, Tina? I mean, I mean, it's my impression of familial cases that they are generally fast progressing, but you look amazing.
SPEAKER_08:My mom lived for 12 years and had a smile on her face on her last day. My cousin only lasted 18 months. So I think it has a lot to do with your mindset. I've always been a very positive, don't worry about problems that I can't fix type of person. And I think that's in my favor. Thank God. I mean, going on five years, December it'll be five years, and I'm still walking, I'm still talking, I'm still driving, unfortunately, no longer working. I was a nurse, and once your hands don't want to do things anymore, it's it's hard to continue doing that.
SPEAKER_05:But throw them to my guitars.
SPEAKER_08:Yes. The guitars definitely would be very difficult without the use of your fingers.
SPEAKER_05:Well, you look amazing and your fingers look strong, and I know that my motor skills have suffered, but I'm still able to control everything. I'm still able to grab my wife's booty. That's the most important part. I can live for a long time if that's the case.
SPEAKER_06:All right. Um, so I'm from Massachusetts, uh South Shore near like between Plymouth and Boston.
SPEAKER_05:What are you doing Saturday?
SPEAKER_06:Uh no plants. Why you were out? Oh, really?
SPEAKER_05:Okay. And we're having a fundraiser. It's called Friend Away. We have played, I'm sorry to interrupt.
SPEAKER_04:No, yeah, that was interesting.
SPEAKER_05:Yeah, it's on Saturday.
SPEAKER_04:Okay. I'll look up the episode. What kind of event is a friend? Are you saying friend away?
SPEAKER_05:Yeah, friendway, like Fenway Park.
SPEAKER_04:Oh, friendway.
SPEAKER_05:We had a gig in Fenway Park in 22 and 23. And right after that, we put on a fundraiser in Ipswich at our friend's renovated barn. Cool.
SPEAKER_06:Okay. I will look up this information.
SPEAKER_05:Um, I don't know that it's public knowledge.
SPEAKER_06:Well, then you can send it to me.
SPEAKER_05:I'll put my number in the chat.
SPEAKER_06:Okay, cool. Thanks. Sounds good. Um, so yeah, I've been diagnosed for two and a half years, but I'm like symptom-wise three years. My left arm is completely non-functional, arm and hand. It started in the hand. Um, have a little bit of left foot drop and starting to have um some weakness in my right shoulder, which I am refusing to admit is happening pretty much. Um, but it's becoming, it's becoming apparent. Um, but I'm still doing all the things. I'm still working. Told them today that my days of coming into the office are numbered. It's getting harder to just like lift things into the car to get my computer there and everything. But I have a nine-year-old daughter, um, live with her and my fiance. We just keep doing all the things. Yeah. It's all everything's a little bit harder, a little bit slower to get ready and things like that. My daughter's gonna help me pull my hair back. Adam is trying really hard to help with that. He's not quite as good as she is, but he's learning. So I appreciate it.
SPEAKER_05:Are you at the Haley Center?
SPEAKER_06:Yes.
SPEAKER_05:Me too.
SPEAKER_06:Oh, yeah. I see Dr. Ho.
SPEAKER_05:Um, I see James Barry.
SPEAKER_06:Yep, they're a great uh you can't go wrong with anyone there, honestly. It's a great, great place. I'm happy that I'm so close to all of it. I was diagnosed within like two months of going for my first appointment, which if Mira tells her story is very different.
SPEAKER_04:Go ahead, Mira. Yeah, against me. Yeah. Amy.
SPEAKER_07:I'm Amy. Um I um I'm from Southern Oregon. I live in a little town called Rogue River that no one's ever familiar with. Um, I was diagnosed, well, in 2021, June 2021 was when I was diagnosed. But I've had symptoms since I was 14, 15, that my hands started shaking in middle school, and um, they couldn't figure out what was wrong with me for quite a few years. And then they diagnosed me with SMA back when I was like 17. Um, and then they came out with a cure for SMA, and I went to go get it, and my doctor said I never had the genetic mutation for it. So then I was like, so I don't have it, and you guys never told me. And then I had to go back into figuring out what was wrong with me. Nobody could figure it out. And so I started having weakness. I've always had weakness in my shoulders and arms and hands since it started back when I was a teenager. But then when it started affecting my legs, I just couldn't handle not knowing anymore. So that's when I went to the Mayo Clinic in Arizona, spent a week there, and they did all the tests all over again, and they got me diagnosed within, I think, a week after. And that's when I finally figured out I had ALS, the sporadic one.
SPEAKER_04:Well, I'm glad that you're a slow professor. Yeah. I'm slow professor.
SPEAKER_05:How old are you now, Mara?
SPEAKER_07:I am 28.
SPEAKER_05:Well, your voice is incredible. All of your voices are incredible. Um, Lori sounds like shit, and she's got a podcast.
SPEAKER_06:Yeah. We all sound lovely, every one of us.
SPEAKER_08:Yes. It's just our new accents. It's fine.
unknown:Yeah.
SPEAKER_05:I am in constant awe of Lori Carey, and he knows that I'm kidding.
SPEAKER_04:Aw, I know you are. I'm just kidding.
SPEAKER_05:But you guys are right away an inspiration to all of us, and thank you for sharing your stories. Mine is similar to all of yours in that I'm a slow progressor diagnosed in December of twenty one. And um so far everything is just slower on me, um, but I'm a hundred percent functional, meaning that I can uh do all the things that I've always done except ride motorcycles. Like ninety-nine percent functional. I have noticed that my left arm in this one is uh getting smaller. I don't know if you can tell, but I can tell when I look in them, but my foot drop is not consistent and equal size. I when I fall I trip on either foot. And I do have a little atrophy in my above my right leg, below my right glute, and we saw that in the MRI in 2019, 2020.
SPEAKER_08:That's exactly where my only atrophy is. Right there at the top of the leg, bottom of the glute on the right side.
SPEAKER_09:That's that's so weird.
SPEAKER_08:Oht cheek.
SPEAKER_05:Like the rest of you, I don't know what tomorrow brings, and and um on tour with the Zag Brown man still, and I'm playing the sphere in Las Vegas in December and January.
SPEAKER_01:Oh yeah, oh yeah, oh yeah, yeah.
SPEAKER_05:Hoping to continue to be on the road. I do have the use of my legs. Um I am heavy, 243 pounds, and have been dropping weight intentionally, even though my doctors say to really be careful with that.
SPEAKER_04:Yeah.
SPEAKER_05:Because I want to move better.
SPEAKER_04:Yeah, I I know that's tricky. We just had a Q ⁇ A with my neurologist at support group, and that came up about losing weight, and I asked her to clarify because um a lot of people hear, you know, don't lose weight, don't lose weight. And then, you know, because they have less activity, they gain weight around the midsection over the diaphragm. And so I asked to clarify that because, in my little opinion, I feel like if you have that extra weight sitting on your diaphragm, it's gonna be extra hard for you to, you know, keep that working at a normal pace. So I think there's you know a good balance there.
SPEAKER_08:I'm right now I'm 60 pounds heavier than I was pre-diagnosis, and now I'm a diabetic. I have high cholesterol, things that I I was a very active, healthy person, and them telling well, I was on steroids for the meningitis. That's where all the weight came from. But I can't get it off. I have no appetite at all, I hardly eat, and I'm still 60 pounds heavy. Well, I haven't been weighed in a year. I'll see when I go to clinic in two weeks.
SPEAKER_05:So I've lost 30 pounds. But on purpose. Yeah.
SPEAKER_04:How do you feel?
SPEAKER_05:I feel I mean, I don't remember what it's like to feel good.
SPEAKER_06:Yeah. Um, we heard a study at some point that said something about a high carb intake was good, so I've been training for that my whole life. So I'm just continuing that.
SPEAKER_04:And you're a champion.
SPEAKER_05:I'm on a diet right now from the Dr. Dean Hornish program, and it's vegan.
SPEAKER_08:You said vegan? Oh, that's that's the opposite of me. I can't do that all.
SPEAKER_05:It's the only diet nutrition program in the US that is covered by insurance. It has been proven to reverse heart disease along with that. Diabetes has um succumbed to this uh program. It's all about stress relief, um, loving more nutrition and exercise. And I'm gonna be on it for another three weeks and then I will probably introduce like chicken and eggs. But uh for the most part I haven't really missed a lot of things. Um a big fan of like chilies and soups and stews, and you can make all those with beans and high protein veggies. And I'm high fiber and no dairy. So I'm cashew milk, almond milk, soy milk.
SPEAKER_04:Yeah, whatever works. And you know, one of the reasons why I wanted to do this happy hour is just because ALS looks different on everyone. I've been getting a lot of private messages lately saying, Are you sure you have ALS? 21 years, how can that be? I don't think that's what you have. I think that doctors are wrong, you know, on and on. And so it really just kind of struck me like if you aren't familiar with someone living with ALS, you might have this vision of exactly what it looks like and who has it. And we all know that recently met someone who was diagnosed at four, four, four years old, um, and is now in high school. Um it looks different and it isn't one specific right. And also the other thing is, I mean, it is doom and gloom as far as a disease, the outcome, the progression. But so many people, like all of you, are finding ways to live a full happy life, and I think that's also hard for people outside of this to understand. For example, your her ALS community, and that you all just got back from Cape Cod. I think I read there was like 39, 40 of you who gathered. I want to hear about that. I want to hear what happened? Uh you know what that experience was like. I think I read somewhere that y'all had the cops calling on you for noise complaint. We did. Oh, the drag show. The drag show.
SPEAKER_09:The neighbors were not helping.
SPEAKER_04:That's right. That's right. I was there for that. Right. We want to hear about it. Do you know where you could?
SPEAKER_07:I was just gonna say we just blast in music at a drag show um event. And it it was only what, like 7 p.m. No, it wasn't late. And the neighbors um complained a couple times about a noise complaint. And so we were like, it's too early. We're gonna we're gonna listen to music, we're gonna dance. So yeah, it was it never showed up. So I guess we weren't doing something too wrong. Yeah, yeah.
SPEAKER_06:Yeah. So it was at like a farm that they have that's like the one off site dinner we go to, and we did it last year too, and had a drag show and dinner. Um and just have a great time. No, your typical drag queen.
SPEAKER_05:Drag racing.
SPEAKER_06:Drag queen. No, we did wheelchair Olympics at the end of the retreat. Oh, on a different drag rates different.
SPEAKER_04:Yes. Yeah, how did the drag show become a part in this annual retreat?
SPEAKER_08:One of our girls that passed away, she loved a drag show. And it was two girls that passed in the same year. One loved to go to the drag shows, and one was just like the life of the party. So the theme for that would have been the 2023 was disco balls and drag queens, and we just loved it so much that they're part of our family now, too. Or it has become our little tradition now to have our drag queen show, and we all just found out that there's a such thing as drag king shows. So we're gonna see if we can find a drag king for next year.
SPEAKER_05:So you're you're not dressing in drag, you're hiring.
SPEAKER_07:Yes, you got it. Yes, we have reoccurring too. Uh our ladies came twice in a row. Oh, yep. They like us.
SPEAKER_04:Yep, that's awesome. Yeah, I know you all have a great chat, so I want to know what was in the chat after you all came back. Like, what was the one thing you all kept talking about after it was over?
SPEAKER_06:Missing each other. Yeah. But it's like an emotional hangover of like, I got to be with you guys for four or five days, like straight, everything felt so normal, like with everyone, and now like we're back to reality, back to home, we're all separated. Like that part always stinks, but it's like one of those things. What is it? Better to have loved than lost, whatever the saying is. It's like you, it's good, you have something to miss.
SPEAKER_04:Better to have loved than lost. Yeah, yeah, I can imagine.
SPEAKER_08:I agree that that's probably the biggest thing that's in chat. I mean, there's some like we going through all the photos and everything, and everyone posting their favorite video on someone's partner that was dancing on the dance floor, or like because everyone got out in their wheelchairs and were on the dance floor, and the videos that's just you know, replaying the memories, and yeah, yeah, uh reliving the moments.
SPEAKER_06:Everyone discussing who got who got dizzyed with the tequila, our new, our new friends, like oh god.
SPEAKER_05:Where's the next one? You guys should have a contingency that goes to Vegas to come to the sphere.
SPEAKER_08:Oh, yeah. I've been dying to go to Vegas, so I just might show them on.
SPEAKER_04:Yeah, we're going uh the weekend of the uh December 5th and 6th, so let's do it.
SPEAKER_05:We just added two new days in January.
SPEAKER_04:Let's make this happen. Oh, they did okay, so you have two weekends in December, two weekends in January now, eight opportunities to see hop play in the sphere. Our ALS brother still singing it and still bringing it. Okay, great. All right, well, that's exciting. Yeah, I saw I saw the um van on Jimmy Kimmel last night. Yeah, yeah, that was fun. I missed it. I didn't see it. Oh, you missed it? Yeah, yeah, it's out there.
SPEAKER_06:I catch everything via like social media after the fact and then I go and watch it, so I will find it.
SPEAKER_05:Yeah, they do a good job of putting it on YouTube almost immediately. Yeah, yeah, yeah.
SPEAKER_04:So I was thinking about if you guys had a soundtrack of your weekend together, what would it be? And then I was thinking about seeing the band on Jimmy Kimmel like their new song, I ain't worrying about it.
SPEAKER_06:Yeah. Well, Kate at our last night, um, she asked the band to play only the good die young. Um, and she said it was her dying wish. So I really feel like that kind of um that kind of encompasses it quite a bit.
SPEAKER_01:Yeah.
SPEAKER_06:But not in like a sad way, where like we spend so much time just laughing and just being ridiculous and just having the best time ever. So it's like like in a partying type of way, like only the good die young. Here we go.
SPEAKER_08:So we all do that.
SPEAKER_07:I like the song, I don't know who it's by, but fight song.
SPEAKER_04:Oh, yeah.
SPEAKER_06:Rachel Platt. Yeah, I like it so good.
SPEAKER_04:Yes, yeah.
SPEAKER_06:That that that one always makes me cry, but it's so good.
SPEAKER_04:That's a good one. I have one that I sing at the top of my lungs. Oh, who sings it? It's called the breakup song, but it's about breaking up with fear. Fear, you don't own me. Um Francesca Best. Something like that. Yeah. Love that. I'll have to listen to it. Yeah, I'll send it to you guys. But um how if I know people that I talk to are always saying, like, how are you doing? How are you managing? You know, just you're everywhere. Like how are you managing to do it all?
SPEAKER_05:I feel lucky. I feel I feel like it's unfair sometimes that I'm as active as I am. And at the same time I curse the crooked, slow steps that I take. And I wonder what tomorrow will be like. But as far as how do I do it all, I just get up every day and put one foot in front of the other until the day comes when I can't. And I think there's a light on me as to how busy I am because I have this music career. But that's what all of you are doing. That's what everyone is doing. They're putting their feet on the floor for as long as they can and getting up and doing what it is that you love and and I applaud you all for that. You know, one of my favorite photos of myself is jumping on stage and tandem with Clay Cook and we have our guitars like this, and I miss that. I miss uh running across the stage and jumping. But you know, I haven't had to leave the stage. Yeah. So you know, um, I'm blessed. I'm too blessed to be depressed.
SPEAKER_08:I like it. I like it. I like that. Yeah, having a purpose and a passion will definitely keep you going. Yeah.
SPEAKER_06:Do people like treat you differently or like is there what's something that's like I don't know, you've found to be different as far as like you said, Lori, people, how you doing? What's going on? Like that type of stuff. And it's kind of like, can we just be normal?
SPEAKER_05:I imagine that everyone gets that.
SPEAKER_06:Yeah. Yeah.
SPEAKER_05:In this room.
SPEAKER_09:Yep.
SPEAKER_05:And I want to wear a t-shirt that says, if I need help, I will ask. Yes.
SPEAKER_09:Yeah.
SPEAKER_06:And add in there, not drunk, I have ALS.
SPEAKER_05:That's a good one, too. But the band has a company that um shuttles us around to the airports and all that. And I've got this one guy that we use a lot, and um he's almost family. And he puts on and takes off my backpack. And I'm like, Mo, leave me alone. And and yeah, I got that for you, I got it. And I'm like, you're gonna fucking knock me over.
SPEAKER_08:Yeah, yeah, yeah, yeah. Like don't. I mean, if it let him knock you over, then he won't do it anymore. Then he might end up with a black eye like I'm breaking the elbow. That's why I said it's safe. If you got something to fall on. Yeah. Yeah.
SPEAKER_05:Yeah. People are always trying to help, and my my band knows better.
SPEAKER_09:You know.
SPEAKER_05:Um, and I'm the first one to say, Coi, carry this guitar for me while I get my backpack. And he's like, Great, you know, um, this chair sucks, hold me up, you know, that kind of thing. The the chair I'm in right now is really easy. But if I'm seated on a couch and where my feet are higher, and you know, I have and there's no arms, I'm gonna be like, hey, help me out.
SPEAKER_06:Yeah. But yeah, I have a friend who says to me, at first she was like, All right, I'm I'm gonna watch you and just see when you need help. And I was like, that's great. Like she was like, I'll wait for you to ask for help. And then after a while, like further into the diagnosis, it was like, This is actually taking up more of my energy, which they say not to do. So can you just actually do this for me? But she was good. Like she waited for my direction to not be like because she knows it's annoying.
SPEAKER_05:Yeah, I've fallen more times by people trying to help me walk, and now I just say if someone grabs my arm, I'm like, go in front of me, and I'm gonna hold your shoulder, and I'll tell you if I'm if you're going too fast.
SPEAKER_09:Yeah.
SPEAKER_05:But that whole I got you, and it's like um yeah, I'm gonna topple.
SPEAKER_08:Yeah, yeah, yeah. My family's been pretty good because I'm the third, so it's not their first rodeo, but my friends are all nurses, and that's in their mind just to automatically help. And it caused a couple fights in the beginning, but now they're good. They they know wait until I ask, which I hardly ever do because I'm very bad at asking for help. I've been a very independent person, but they're getting better. I'm getting better.
SPEAKER_06:Yeah, I feel like that's one of the criteria get ALS is you have to be like toxically independent, so then so then you can't do that now, now this is your punishment. Okay.
SPEAKER_04:Yeah, I see that. Yeah, everybody here has really put themselves out there in our community and beyond to educate people about ALS and the importance of finding a cure and the importance of having people come into our world to support finding a cure. What do you think it is within you that that has made it possible for you to do that with everything else that is going on in your life? Like, how one thing I remember you saying in an interview earlier when I asked you how did you decide to go public, and you said if the girls were to ask you, Dad, why didn't you do X or whatever? Like, are your daughters a motivation for you?
SPEAKER_05:Yeah, we just wanted to be able to tell them that we have done everything that we possibly can. And for me, that meant using this rock and roll platform to our benefit. And to others, it means jumping in on one of the other amazing 501c3s out there already doing good work. And for us, we felt like there was a huge community that otherwise wouldn't have known about any of this except from our perspective. So you know, we've been very blessed to have granted over four million dollars in three years for programs. We support Healy, we support ALS TDI, and we needed our own company, our own 501c3, to be able to custom pick. You know, we support Duke and Houston Methodist and all these programs that we believe in. We wanted the freedom to be able to explore. Everyone gets a little one-sided in their vision because they're it takes everything. Yeah, they will have success in an area and throw their um efforts into that. And that's amazing, but we wanted to be able to pivot. Yeah. So um that's why I'll want to cure that.
SPEAKER_04:Yeah. I know you have to run. Um, I want to ask about Harmony for Hope, and I'll let you go, and then I'll wrap up with the girls. So talking about uh Hop on a cure, your second gala is coming up in Atlanta on October 18th. So I'm really excited to go back again. Same format, singer, songwriter, where everyone on stage gets a turn to play a song and like talk about the music or talk about how the song was born. I think that's really a cool, unique experience and a great way to raise funds for research. So what are you excited about this year for that?
SPEAKER_05:Well, all the singer songwriters are world-class, but there's a fun thing that we're doing this year with a guy named Eric Pasley, and Eric takes up a bunch of songwriting ideas and puts them in a hat. So you write down you know, write a song about meeting the love of your life on a subway. You know, and he'll he'll be like some way the subway you know made us fall in love today, and like he I mean that's stupid or whatever.
SPEAKER_04:Yeah, yeah, yeah. I got it.
SPEAKER_05:He will take it and make it into this badass song and probably he's got his craft so owned in. And the cool thing is if he actually I I need to ask him how many times someone has like bought the song.
SPEAKER_01:Like oh yeah.
SPEAKER_05:If it becomes a Blake Shelton hit, yeah, then you're a writer. So it could be just an entertaining night, or it could be retirement.
SPEAKER_09:Yeah.
SPEAKER_05:That's so cool. So that's fun, and we always have an amazing menu, and we we've got great sponsors and lots of great fun tonight. Um after the gala, we're gonna do karaoke with the performers.
SPEAKER_04:Yeah, that's gonna be fun. Yeah. Well, I will drop a link, uh, of course, in the show notes. Hopfunnycare.org. Tickets are available, sponsorships and benefits uh are available. So if you're interested in checking that out, Hop I know you gotta go. So what are you dying to tell us?
SPEAKER_05:I'm dying to tell you that I love Lori Carey. Oh heart right back. I'm dying to tell you that her ALS story is comprised of a bunch of Amazon badass queens.
SPEAKER_09:Oh yeah.
SPEAKER_05:We love that. Thank you guys for letting me invade your space.
SPEAKER_04:Oh, thank you. Thank you. Thanks for stopping by. Thanks for stopping by. Hey, and I'll see you in a couple days at the Joan Martin Foundation.
SPEAKER_05:Hey Kelly, um, you guys can all text me whenever you want and send your name with it. And um if you want to come to Friendway, let me know.
SPEAKER_04:Oh yeah, I'll text you. Thank you. Enjoy the content. All right. See you guys. Okay. Wasn't that fun?
SPEAKER_07:Yeah.
SPEAKER_01:That was such a cute surprise.
SPEAKER_04:I loved it. I asked him about hey, do you want to come on and do this with some ladies from her in the story? He said, absolutely, yes, let's do it.
SPEAKER_06:So love that's awesome. Yeah.
SPEAKER_04:Okay, I'm trying to circle back and remember what I was asking you all before I realized you had to go. Yeah. What is it within you that allows you all to put yourselves out there in the way that you do?
SPEAKER_08:Well, this honestly is the first type of interview that I've done like this. So I have been more in the research area of ALS. I'm on the Less Turner board, uh, Betty's game board, and the leadership of her ALS stories. So I mean that that was taking up a lot of time, and I but I know with my mom, my mom never got involved with the ALS community, and it was so isolating. Over the years, you know, she wouldn't leave the house because she didn't want people to see her. She was very love you, mom, but she was very vain. And you know, when everything changes, you look a little different, and I could start to see that happening with me with the weight gain and all that stuff, and now with my voice not being what it used to be, I'm I already live alone. I'm by myself, I don't want to be in isolation, so I think it's time to start telling my story and getting myself out there, and I mean, all I ever see is my neighbor across the street. I need to get around a little bit more. But now anytime someone asks me to do anything, I don't even check in with myself anymore. I'm just like, yes, let's go.
SPEAKER_04:Yeah.
SPEAKER_08:And we'll make it work when it's happening. But isolation is not the way to go with this disease.
SPEAKER_04:No, no. I mean, I've learned that over and over again, you know, talking to so many people over the last five years, the power of community. And every time I say that, I say her A-list story is a perfect example of that. Man, it really is a game changer. So I'm glad that you're willing to do that. So, Kelly, what about you?
SPEAKER_06:Um, so I have a nine-year-old daughter. She was seven when I was diagnosed, and she was at her dad's for a few days. And so I like wanted her to come home because I just wanted to hold her, but I also couldn't face her because I just couldn't stop crying. So she didn't come home for like a couple of days. And I had, you know, my pity party. I mean, well, well deserved pity party. I was, you know, upset. I just like couldn't, I thought everything I was gonna do was the last thing I was gonna, last time I was ever gonna do it. And then thankfully for me, my progression was slow. So I'm like, okay, well, I guess I'm not gonna die in like five months. So I should probably like go back to a life again. Um, so you know, it's like I kind of looked at it. I'm like, if I'm gonna just lay in my bed and be miserable about this, then like what's the point of even living at that point? So um, plus I'm very much an open book, so I'm fine with sharing my story and who I am and what I've been through and what I'm, you know, sharing her ALS story. I mean, that group has saved so many of our lives. I really feel that way. Like there's the group just it is, it can be so isolating. People don't know what you're going through, people don't understand like what it's like, and they try to and they try to be helpful, but people just don't get it. So just being able to go to that group and just talk about whatever it is, ALS related or not, we just talk about everything. So having that is, I think that has opened, I'd say most of us probably up to a way that we probably may have not been before as far as sharing and talking and being open. And but for me, it was just like, well, I'm not gonna lie to her about what's going on. I mean, I've kept things age appropriate, but she's a big part of it. Like she helps me with things, she helps me get dressed, she helps me, you know, do my hair, things like that. And so I'm not gonna ask her to keep it to herself. Like you can't say what's going on with mom, you know? So we just, I mean, she wouldn't anyways. She sings like a canary. But she was really like my push. And then it was like, okay, now I'm I'm gonna do all the things I can while I'm here, especially because I have so many girls, so many sisters that can't speak for themselves, can't take themselves to a doctor's appointment, can't take themselves to like a research thing and they're relying on somebody else. So I looked at it and I was like, well, while I can still do these things for myself, I'm gonna do them for the people that can't and for myself. So that was like really just kind of how what pushed me and and what has guided me through this, I'd say.
SPEAKER_04:I love that. And I'll tell you, my sons were 11 and 13 when I was diagnosed. And um, you know, after the second opinion, we told them what was going on. But I think it's been really healthy for them, you know, over the years. And I've seen both ways. I've seen uh families that have not told their children what is going on, and uh it makes it really hard, you know, because no matter what, as it feels unfair to them, and you know, and some mom because they're still there living it. Yeah, and you know, as a mom, kids know they know all, they know all. Yeah.
SPEAKER_06:She's said to me too sometimes, sorry, she said to me too sometimes, she's like, Mom, when your other hand doesn't work, I'll help feed you. And we've never talked about progression, but she just intuitively is like, I'll help you do this when you can't do it, which is really interesting because we've never spoken about progression, but she sees it. She sees it. So it's yeah. Yeah.
SPEAKER_04:Yeah, it tells you right there.
SPEAKER_06:They know.
SPEAKER_07:Yeah. Mira, I think mainly I was just always kind of struggling with like trying to figure out my purpose after diagnosis. Um, and I think that once I like joined her ALS story and met all the girls and kind of saw the example of all the advocacy and trying to make a change, I think that just kind of drove me to be like, maybe I should share my story. Maybe I maybe make it a little more normal, unless I just feel like people just, you know, think you're gonna die and are like you're gonna be gone in three to five years. And I want there to be more knowledge of all the different, you know, age and gender and how long you can live with it and all that. And I know that I'm kind of a unique unique case, so I just felt like I could spread a little more awareness and um make maybe a tiny difference. I want some sort of difference, yeah.
SPEAKER_04:And you are, and you are for sure. Yeah, yeah. And that life can go on, you know. Abilities might be different, but um you still have a purpose, you still have a lot to give, like everyone. Even if you lose your voice, you have a voice that's powerful. So what is one dream that you are still determined to chase, even if it looks different?
SPEAKER_07:I want to keep traveling. I love traveling, and so I want to keep doing that. Yeah.
SPEAKER_08:I've never been a train chaser, so I I just wanna enjoy every day, every moment, and make a couple people smile along the way. That that is what I want. Yeah, not really that you know, I I world peace. I'll I'll do that one.
SPEAKER_04:We'll take it for sure. Kelly. What about her ALS story? Your group. Is there a goal or something that you all talk about that you would like to accomplish as a group? Kelly.
SPEAKER_06:We like talk about making a compound for all of us to live in together. Um, and I think that's a pipe dream, although I we've got a lot of determination. So I don't know. Um, but just it because there's so it's so hard finding good caregivers. The stories we hear from our friends are just horrific, the things that they go through. And so, like if we could find a place and have hire caregivers and have everyone together, like that would just be amazing. Um, one thing that I feel is like realistic, at least for me being involved in timing-wise and things like that, is and resource-wise, um, having our kids that are, you know, as they get older, having them be able to um have contact with each other so that when like their parents pass and things like that, they have people that they that know what they went through and like their moms knew each other and things like that. Um, so that's something that yeah, yeah. It's and it's like hard to hard to think about, hard to talk about, but like that's something we've mentioned in the past. Like, hey, we should try to set something up with each other so that our kids can can have each other, like just like we have each other. And now it's okay.
SPEAKER_04:I cry all the time. It's fine. Well, it there is something to be said, you know, like when people live with ALS, when we meet each other, there is an instant bond because we get it, yeah. And so it would be the same thing for your children, like and it might not be like a formal bereavement group, but it would just be someone that understands, you know, in a friendship to be born, just because they understand. So I think that's really cool. Mira, you mentioned that you're not gonna give up traveling. Do you have any trips planned?
SPEAKER_07:Um, yes. I think the soonest one right now is only I have never been to Florida, and I've I've been to a lot of states, and so that one's kind of one that I've never seen. So I mean my friend want to go to Florida next April. Not anything soon yet.
SPEAKER_04:I want to go to beach. Ah, absolutely. Nice. Well, you all can look at Las Vegas and we can get in the sphere.
SPEAKER_07:I would love to see the sphere. I've never been. It looks so fun.
SPEAKER_04:Yeah, it's from what I heard, the show is gonna be amazing. Uh, it's gonna be fun. Okay, and thank you all for being here. I really appreciate you for taking the time and coming on and chatting. It was fun. Um, Tina, what are you dying to tell us?
SPEAKER_08:I'm dying to tell you that even though I'm terminal, I am not throwing in the towel. I'm going to live every day and enjoy every moment. And if I say anything that offends you, that's your fault.
SPEAKER_04:I love it. Okay. Kelly, what are you dying to tell us?
SPEAKER_06:I am dying to tell you that people that I've met with ALS are some of the funniest and happiest people I've ever met in my life. And I think everyone could take a page from our book.
SPEAKER_04:Yeah. And my husband always says that, like, they're always in the nicest people, you know, too. Like, oh wow.
SPEAKER_06:We got a lot of dark humor too, gets us by. I'm dying to tell you that dark humor is what saved you.
SPEAKER_04:I believe it. Yeah. Okay, Mira. What are you dying to tell us?
SPEAKER_07:I'm dying to tell you that there is still life after ALS. We're we're all laughing and living and having game nights and the girls' nights and going out, and we're not we're not just hiding out and doing nothing. We're we're living our lives.
SPEAKER_01:Yeah.
SPEAKER_07:Aww.
SPEAKER_04:Thank you. Thank you all again for being a part of this. My first happy hour edition. Thank you for your time. And uh, being in touch. Okay, all right. Thanks. All right. Bye everyone. Um, thank you all for being great ALS advocates. To my listeners, I'm gonna put the links that I mentioned. The link to Hop on a cure. Uh, if you're interested in checking out Harmony for Hope coming up in the Atlanta area on October 18th. Uh, I'll put the ticket link there to make it easy peasy. I'll also put the link to her ALS story so that you can follow them, see what they're up to, and support these young ladies. If you are not connected on social media, yeah, you can do that. I'm pretty much everywhere. All at I'm Dying to Tell You Podcast. So Facebook, Twitter, Instagram, LinkedIn, and TikTok. All at I'm Dying to Tell You Podcast. I appreciate you sharing this episode if you think there is someone that can be blessed by listening. So until next time, know you are loved and not alone. Thanks for listening.
SPEAKER_03:Thank you for listening to our mom. Make sure to visit her website at I'm dying to tell you podcast.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.