When Life Changes Before It Begins | A Young Couple’s ALS Story

What happens when the life you’re just beginning suddenly changes forever?

Hannah Broermann and Logan Chowning were newly married, building a home, and dreaming about the future when Hannah began experiencing symptoms that eventually led to a diagnosis of ALS at just 27 years old.

In this episode, Hannah and Logan share the shock of diagnosis, the uncertainty that followed and how they’ve learned to navigate marriage, caregiving and a future they never expected. They also open up about finding strength in community, embracing hope, and choosing to keep building a meaningful life together.

Whether you’re living with ALS, supporting someone you love, or facing an unexpected challenge of your own, I hope this conversation reminds you that even when life changes, hope and love can still grow. 

In this episode:
• Young onset ALS
• ALS diagnosis at age 27
• Marriage and caregiving
• Finding strength through community
• Living with hope and purpose

If this episode encourages you, please follow I’m Dying To Tell You, leave a review, and share it with someone who could use a little hope today.  If it's on your heart, follow Hannah and Logan on Facebook and attend or support their upcoming Hope for Hannah event.  Hugs, Lorri

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

Transcript

Welcome And The Big Question

Paul Carey 0:08

Hey, I'm Paul, and I'm Christian. 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 0:58

First of all, I love that intro. My two sons, Paul and Christian, who were both just here in town for Father's Day. They left yesterday, a quick weekend, and I missed them already. But so so good to hear that. So I'm Lori, your host of I'm Dying to Tell You. And thank you for being here. So I think that everyone is going to be able to relate to our conversation today. I imagine that everyone has experienced this. You have a life plan. You take all the steps to make it happen. And all of a sudden, something happens. And your whole game plan is shifted. Perhaps even your whole life is changed. And then your new plan is now what? Now what do I do? And it's crazy that I'm actually having this conversation with a young married couple whose early years of marriage were shaped by an unexpected and life-altering ALS diagnosis. I'm gonna jump on with Hannah and Logan. And we're gonna talk about what it feels like when everything is still new, a marriage, a home, your future plans, and then suddenly life takes a different direction. I am so proud of my young friends, and Hannah was diagnosed with ALS at just 27 years old. But this conversation is not only about ALS, it's about what happens to identity, marriage, and hope when life becomes uncertain. And I'm really happy to be talking to Logan, Hannah's husband, and ask him about what it has been like stepping into a caregiving role as a new husband, and you know, while they're still trying to figure out life and build a life together. You know, how the relationship has shifted, deepened, redefined when their plans no longer look the way they imagine. And I'm gonna ask about community because I know how powerful community is. And I'm gonna ask them what is it that they need and what they are dying to tell you. I know they've mentioned that, you know, of course they're still trying to figure out their new life, but I'm gonna ask them to share what they have discovered about each other, about their relationship already at this point. Okay, let's go on over to my chat with husband and wife, Hannah Bruerman and Logan Chowning. Let's go. Everyone

Hannah And Logan Before ALS

Lorri Carey 5:01

has a plan, and they have a life plan, they know what they want, they plan for what they want, and a life that they want. And then things happen. No matter if it's ALS and another disease, life in general, you know, a tragic event, anything. And then it's kind of like where do we go from here? Because we had a plan, and now our plan is shaken, it's rocked, and now where do we go from here? And I'm just so proud of you guys for being so young and having the ultimate thrown at you and taking you know control of it the best that you can. So thank you guys.

SPEAKER_00 5:58

Thank you for having us. We're yeah, so excited.

Lorri Carey 6:03

Good, good. Let's talk about a life before it went for a turn that you were not expecting. Like, Hannah, tell me what was going on in your life.

SPEAKER_00 6:15

And yeah, so I was working full time. Um, I used to work for St. Vincent de Paul, now I work for Meals on Wheels. Um, but working full time, um, I was also coaching tennis, so that kept me very busy, but in a good way. I absolutely loved it. Uh-huh. Um and uh during the week, you know, Logan and I would go to work. We would come home and walk the dogs. We had two dogs at the time, an English Mastiff and an American bulldog. Um then we would cook together, eat together, and that was kind of it. On the weekends, we liked to be outside. We're big uh Cincinnati people, so we were always following what was going on in the city and you know, going to outdoor festivals, outdoor events, yeah, really anything outside, but we tried to do one fun thing per weekend. Oh so yeah, I love it.

Lorri Carey 7:22

Yeah, yeah, that's great, yeah. And Logan, tell me about you.

SPEAKER_06 7:27

Well, so I I grew up on uh the West Side Cincinnati and I was able to pull Hannah over here.

Lorri Carey 7:33

I was gonna say, once on West Side are always on West Side, that's right, for better or for worse, right?

SPEAKER_06 7:39

And uh so I grew up here and um we you know went to Mount St. Joe, that's where I met Hannah. My degree is in athletic training. Um, I was planning on going to medical school, but then COVID happened and my I got canceled, uh, and then I just ended up staying in the workforce. And so um, anyways, I work as an athletic trainer. I was at Mount St. Joe for a while, uh, working there, and now I work for children's in the sports medicine department there where we see kids like outpatient, uh, which is pretty cool. And um, yeah, no, I mean I was always just like Hay and I were always getting in anything we could, especially like she said, those events where if there was an ability to have a cold beer and and some food, we were we were about that. So more of me, probably, you know. Um yeah, we just you know, we we had good friends and we used to hang out a lot, and we were always doing something, I felt like I mean we were always out and about, so yeah, I love it.

Lorri Carey 8:38

Well, I can tell why you two were attracted to each other, you know, having the same personality and the same giving heart as far as even through your career. So that's really amazing.

Love Story And Marriage Dreams

Lorri Carey 8:54

Tell me about Hannah, like when you met Logan, like what you when you knew, like this is the guy, this is the real deal.

SPEAKER_00 9:08

Yeah, so we had actually met for the first time when I was a junior at the mount and he was a senior. Um and it was just kind of in passing, and I had never seen him around, you know. But I thought, well, he's you know, he's pretty nice and pretty cute, like maybe you know, we can cross paths again one day. But it wasn't until after he had graduated that we started dating, and I I think I knew he was the one from our first date, it was like six hours long. Uh, we stayed up talking until like two in the morning, and he, you know, he dropped me off and we went out again later that week. And um, yeah, I mean, it was the best first date I had ever been on, so I took that as a good sign.

Lorri Carey 10:08

Yeah, that is a good sign. You're like, okay, this one's different. Yeah, uh Logan, I'm gonna put you on the spot. What about you? Like, how did you know that Hannah is the one?

SPEAKER_06 10:22

Uh, I guess you you just think about like how do you know someone's a good friend? And and it's yeah, it was just so easy, you know. Like Hannah said, like our first date, we gosh, we talked for I picked her up at like six and I didn't drop her off till like two or three in the morning. I mean, we just sat at this cafe down in Clifton and talked until they kicked us out, and um, you know, Hannah is she is everything that like you see posted online about her in terms of like she's just a genuinely kind soul, and um more than that, she's just fun, you know. Like we we've always just had fun. Um, she's goofy. There's never been a time where you know we were at like out with a group of friends, and I had to worry about like, okay, like do I need to make sure Hannah's having a good time? Like, she just connects really well with one and super easy to get along with, and um it's hard to find somebody that genuinely cares about people and Hannah's stuff with that person, and so it didn't take long for me to uh realize I wanted to make sure that I gotta be a part of that for a long time.

Lorri Carey 11:33

Yeah, yeah, I can see that. That's great. It really does um tell something when you introduce someone to a new group, and you don't have to worry about them, you know. They they run right in, they make the effort, and yeah, I like that. I like that a lot. So, I mean, you're young, 25 and 26, when you're getting married. What are the dreams that you talked about?

SPEAKER_00 12:00

Yeah, I think you know, it was probably similar to any other young couple getting married. Um, we wanted to get a house together, um, start a life together, and you know, eventually start a family, you know, have some kids. And we were able, we got our uh first house together right before we got married. And so that was kind of crazy, like trying to move into this house, you know, make it our own, but also planning the wedding. Um, but all all fun, um, all things considered. And yeah, but yeah, you know, after you know, we we had the wedding, and then after that, um, I think we were ready to kind of focus on ourselves and get life started, and then it didn't turn out that way, but um yeah, thing to add.

SPEAKER_06 13:02

Well, I mean, I I think that you know, I come from I'm the oldest of five kids, you know. I grew up, there was eight of us in a two-bedroom house. Like you have to learn to be close, and family matters a lot, and you know, Hannah and her family are super close, like you know, her mom and dad and her aunts and uncles and all their kids all come over every Sunday, and we have dinner at her mom's every Sunday. Um, and so family is such an important part of our lives like separate from each other. But I think that was the big emphasis for us is like the excitement of being able to, you know, have our family. And you know, it was it was Hannah's grandmother that was kind of like the person that hosted all the events, and then when she passed, her mom took over, and then we kind of always envisioned that Hannah slash I obviously would be the ones that kind of took over that kind of role, and you know, we were excited about that, and we were excited about you know having the the argument like do we send our kids the bait in because that's their family thing, do they get them out of their seating, you know? Um, you know, and certainly, you know, athletics have been a big part of our lives differently, and you know, we were always we'd always talk about and dream about like coaching our kids and sports and being a big part of that, and um, you know, everything else would kind of take care of itself, and it's just our life that we built together would be what we were most excited about, and so you know, like you said, uh, looks different than what you you planned for, but yeah, yeah.

Lorri Carey 14:38

Let's

First Symptoms And Seeking Answers

Lorri Carey 14:39

talk about when things started to change, and you were like, okay, this is not what we envisioned in our life. Hannah, can you tell me about when you noticed that something was wrong?

SPEAKER_00 14:58

Yes, so I noticed my first symptom in January of 2024, and I remember it was January because my New Year's resolution for that year was to work out more. And I was doing it, I was working out a day, and um, you know, but one day I noticed my right calf was really, really tight and really, really stiff. And it didn't feel like a result of working out, but I said, well, it's probably that, you know, I'm getting older, I haven't worked out in a while. It's I probably just went too hard and I need to take it easy for the next few days. So I I did that, but a few weeks went by and it was not getting better, and a few months went by and it was not getting still not getting better, and it was actually getting worse. Um, and that was also around the time that people started to notice, you know, something wasn't right. Uh, specifically Logan and my mom, they noticed that I was kind of limping and uh my foot was kind of dragging, um, and I was tripping here and there. So um that's when we decided, you know, it's probably not just a result of working out too hard, and we need to get this checked out.

Lorri Carey 16:31

Yeah, yeah, because you're an athlete, you're a coach, and like you know, kind of your body, and you're like, this is definitely something different.

SPEAKER_00 16:40

Yes, yes, I knew something wasn't right. I didn't know what it was yet, but yeah, something was off.

Lorri Carey 16:47

Yeah, and Logan, so during this kind of unknown period, but knowing that something isn't right, you know, what are you thinking?

Getting Dismissed And Misdiagnosed

Lorri Carey 16:55

Just even anything specific, or we should just get this checked out.

SPEAKER_06 17:00

Yeah, for for me, it's like I immediately started going like um, and at the time I was actually working for an orthopedic spine surgeon, and the way she was walking almost looked like a foot drop, like from like a like a discrimination or something, right? So yeah, I was like, Oh, that's weird. Um, and so we I got her hooked up with one of the PAs I worked with to kind of get her started. Uh well, actually, back up. She first went and saw and saw her primary care provider, and she didn't even examine her. She was like, uh, you've got flat feet, get better shoes, and just walked out of the room. And I was like, okay, that's small, that's not right. So we're gonna we're gonna try to work on this ourselves, and so that's when I got her, you know, set up with a PA. Uh, we did, you know, kind of a lumbar spine workup, and um, you know, the the x-ray and the MRI were uh mostly benign, like there was a discremenation, but there was no nerve abutment, like nothing that would explain her symptoms. And so then I was like, well, like let's do an EMG. So we did an EMG, and that showed some of my peripheral nerve damage, but again, like nothing super specific, right? So you know, that's when we're like, okay, like time to see neurology. And then the first neurologist we saw, he was like, Oh, this is MS. It's for sure MS. Like, we're gonna do a full workout for MS. And then we went through all that, you know, we did the brain MRI, we did lumbar puncture, you know, all the subsequent blood work for like the inflammatory markers, and those were all negative. Yeah, and he's like, you know what? It's psychosomatic, it's completely in your head. You've gotta work through that.

Lorri Carey 18:45

Like, uh oh my gosh.

SPEAKER_06 18:48

So he's like, but if you want, you can go to a Cleveland Clinic for a second for a second opinion if you want. So we're like, Well, uh, we got we gotta try, you know, we can't figure it out. So then we went through that process, and we saw a neuromuscular uh neurologist up there, and went through, basically repeated all the game of tests, you know, MRI, C spine, T spine, L spine, another lumbar puncture, more EMGs, still nothing specific. Got to the point where he was like, Okay, like let's just do a full genome genetic test, which is crazy expensive and like hard to do, but we're like, whatever, whatever it takes, right? We know what we can do to help. They do that portion, and that comes back, and she had a gene mutation that is some kind of variant of crab A disease, which we had never heard of.

Lorri Carey 19:40

What was it called?

SPEAKER_06 19:42

Crab A disease, K-R-A-B-B-E. And we had never heard of it. Um, but the geneticist, you know, gets on the call to talk to us about it, and she just starts bawling the geneticist, and she's like, I'm so sorry, like I I I can't believe I have to tell you this, but you know, this is a gene mutation for crab A disease, and um, you know, it's usually terminal within a couple years, and so obviously we were devastated. So then we meet a crab A specialist uh at Duke University, and she's like, This is not a pathological version of the variant, this is not what's causing your symptoms whatsoever, and this is not how the symptoms present for crab A disease. So then we're like, okay, now what do we do?

SPEAKER_05 20:29

Oh my goodness.

SPEAKER_06 20:30

So we're trying to get in to see uh another neurologist, and I think they thought we were doctor shopping at that point, and so like no one would see us, and it was like I had to use some connections, and Hannah, you had to use some connections to finally get our referral to Dr. Neil. Um, and then we saw Dr. Neil, and then you know, we he was like, It's been about a year since we did an EMG, like let's just try it again, let's just see. And then that's when we got to the the bottom of it, basically.

The Test That Confirmed ALS

Lorri Carey 20:59

So when you finally got the diagnosis, were you prepared that it could be ALS?

SPEAKER_00 21:08

Not at all. Um at all. Okay, yeah. So we had talked about ALS pretty early on in the process and they ruled it out very quickly. But come to find out, it was because I had not progressed enough for the damage to show on any of the tests. So when we repeated the EMG with Dr. Neil, he was able to see that damage that had progressed over time, um, over about two years' time, I guess. Um and the doctor that was performing the EMG, she knew right away and actually gave us our results in that appointment with her. Um, you know, whereas you Usually you get the EMG done and then you meet with uh your neurologist later. Yeah. So yeah, we we were not prepared because we had thought it was ruled out a long time ago. Um and I I just thought I was going in for this test and that we would find out the results later. Wow.

Lorri Carey 22:24

Tell me where your mind went at that point.

SPEAKER_00 22:27

Yeah, so my mom had taken me to the appointment because, like I said, we didn't think we would be getting any results. So Logan was at work.

SPEAKER_06 22:37

It's like one of the only appointments I didn't go to. Like we're like, we're MG, and then we'll follow up next week with Dr. Neil. So I took all, you know, I mean, and I was trying to preserve PTO for what she needed, and so I didn't, I wasn't there, which so sorry.

SPEAKER_00 22:53

Yes, yeah. Logan was at work. Um, my mom was in the room, but she was on her phone, you know, we just thought it was a normal test. Yeah. And the doctor performing the EMG asked if we wanted to know the results, and we were like, well, sure, you know, we weren't expecting anything, but if you have them, you know, might as well might save us a trip next week, you know. Um, and she stepped out of the room, and when she came back in, she pretty much said it right away that she was positive that it was ALS and that we should still come in for our appointment the following week. But in the moment, my mind kind of went blank and I almost felt like I couldn't hear. Like I was looking at her and I was listening to what she was saying, but I was not hearing it. Um, I yeah, I was in a daze. Um, and I yeah, I think I was just in disbelief, and I was wondering how is this happening? You know, I thought we had ruled it out. Um, and you know, I had been misdiagnosed in the past. So is this another misdiagnosis? You know, I was trying to figure out what we had missed along the way, but it was definitely a day I will remember forever.

Lorri Carey 24:24

Yeah. So you get that news and you're kind of like in a fog. I get it, I've been there. You know, you're like you're kind of like an out-of-body experience. Is this really happening? Kind of thing. So you call Logan and you tell him they were wrong, or now they think and say it less.

SPEAKER_00 24:52

Yeah, so we we called him from the car, and he was not expecting a call, so you know, I kind of said, Well, is there somewhere you can step aside to? Um, I don't have the best news, you know. So is there somewhere private that you can go? And he found somewhere, but we told him, and yeah, I mean, he reacted as you might imagine. Um, but once he got himself together, um, I remember him kind of turning it around real quick, and he was like, it's okay, it's all right, it's gonna be okay. Uh, we're gonna get through this. This is just a bump in the road. And I could tell his mind, like the the wheels in his head were moving, and he was thinking about okay, what do we need to do? Uh, how do we need to do it? How are we gonna get through this? Um which was encouraging for me, you know, because I felt pretty hopeless in that moment. But yeah, he he was positive then and is positive now that we're gonna get through it, and it might be hard, but hard isn't bad.

Lorri Carey 26:14

Yeah, yeah. I mean, I love the love between each other and the support that you have for each other, and you know, it's not a given. I mean, I've been in ALS land for 22 years, and I have seen a lot of relationships that do not last and people not walk away because they can't handle it. And I know it's really hard to imagine, but it does. And I've always said that you know, seeing so many people go through it that the people that have support and they have community and they allow people to support them do better, and so Logan, I'm happy that your mind and your instinct went, you know, right there,

Living By The Day

Lorri Carey 27:10

of course. Like, uh, we'll figure it out, you know. I'll be here for you, and and we'll figure it out. Tell me some of the ways that you have been able to show up to show we're gonna figure this out.

SPEAKER_06 27:28

You know, it's it's one of those things where you have to be focused on the process. And um, you know, like like every year, like I watch the Espies, right? And you've heard like heard speeches from like you know, Arthur Ash and Jimmy Velvano, and and you know, all these you know different folks, and you think about you may most of the time you hear when people are are battling cancer, like it's not really about the result, right? Because um ultimately we we all die. Um and when you're during when you're dealing with a what is currently a terminal illness, like we know what the outcome is, and so that's not how you measure the success, right? Like you don't or you don't win against cancer by if you've if you live or die, right? Like it's about how you choose to live each day, and so I just try to encourage Hannah to live each day the best that we can, and right now we're still trying to figure that out, you know. It's yeah, it's a lot of survival right now. Um it is, and I think that we're we're we're getting to the point where we're trying to identify like how we can actually live each day and make the most of it. You know, I know before we got the diagnosis, like I would just and I feel kind of bad now because I would really push her to keep doing all the things that she would normally do the as best as she can. You know, like she had thought about not coaching her last year of coaching of tennis, she had thought about not coaching that year uh because she didn't want to let the girls down because she couldn't, you know, play with them and like actually do as much like physical or instruction as she normally would. I was like, no, like like you gotta do it, like for you, for them, like you gotta do it. And she did, and it was a struggle, but she got through that, and you know, and now I think there are days where I I I take a hint and realize like, okay, today's not a day I can push. Um, but then there's some days where I know she doesn't always want me to, but I can push her to do the things that she least wants to do because sometimes those are the things that we most need to do when we're going through these hard times. And it stinks because you know, you you have this big thing blocking your view to where you can't see, but if you just pull it away a little bit, you see all these other amazing things around you. And if you can help someone do that, if you can force yourself when you're in it to do that, you know, you can still live and enjoy things, and even if it's just fleeting, you can still find those moments of joy. And um, you know, so on the days where she can't be pushed, I try to just be there with her and for, and she gives me some grace because sometimes I push too hard or too much, but um, you know, and you certainly like I said, I try to do it when I can to keep her going, you know.

Lorri Carey 30:30

Yeah, and that is so so important. And I know you say like you're pushing her, but I think of it as you are encouraging her, you're encouraging her, and you know, my guys over 22 years, my guys have always been really good at that. They do not baby me, they do not cut me any slack, they say you'll figure it out, you'll figure out a way, and it's been so so helpful. And I have seen the other scenario, you know, where it's like, okay, I have an excuse that I don't have to do that, or you know, I don't have to push, or um, I have ALS and I can let somebody do that for me and on and on. And it just uh it takes away a lot of things faster if you let that happen. I can see it in you guys, both of you, that you're not gonna let that happen, and you're gonna continue to encourage each other. And I love how you said, you know, if you step back and you have a whole different view, and you can see the opportunities in front of you, and you know, continue to do that, and it's not gonna be every day, every minute of the day, but keep that as an option, you know, a lot.

Accessibility And Home Decisions

Lorri Carey 31:56

So you have the diagnosis, your life is changing. Now what? Now what?

SPEAKER_00 32:04

Um now we uh like Logan said, I think we're still trying to figure it out, yeah. But now we're kind of focused on okay, what do we need to be most successful in this journey? And especially when it comes to accessibility. Um so it's our first home together, is amazing, and we love it so much, but it is not very accessible. Um so we are currently looking for a house that I can use my wheelchair in because I'm I'm at the point where I need the wheelchair, but it doesn't fit all the way through our house right now, and so I'm kind of stumbling around with a walker um and you know, things like that. We're also hoping to move closer to my parents because they are uh my second caregivers and have helped us a ton through throughout this process. So, you know, we've always um wanted to move closer to them. That's always been part of our plan, but it's just happening a little sooner than we expected and planned for. Yeah, yeah.

Lorri Carey 33:35

So maybe you can film a home that would allow you to, you know, give it all the accessible features that you need.

SPEAKER_00 33:43

We have thought about that. Um, my parents built their own home uh back in the day, and we have a very handy family. Uh yeah, they didn't have to hire anyone to build their home or you know, paint and all that good stuff. Um, so we have thought about it and people have offered, but um, yeah, it so it's an option. We're not positive what we're gonna do yet, but it is an option.

Lorri Carey 34:18

Yeah.

Letting Community Step In

Lorri Carey 34:19

Well, you guys have been through a lot, and I know here in our community you have become very vocal and you have put yourself out there. Can you talk about leaning into the community? Was that something easy for you to do? Um, and if so, if if not, how come?

SPEAKER_00 34:43

Yes, it was very difficult to lean into because I I like to help others, but I don't like to accept help all the time. Um, I'm very bad at that. So um, you know, the ALS community was great and wanted to help us right away, which was, you know, looking back, it was amazing and such a blessing. But in the moment, I think, you know, we were overwhelmed with the diagnosis, but all also all these people that wanted to help us. And we didn't really know how that would work or what it would look like. But um after the the first time it got easier, we actually met with Ben Um Cafero uh from like a mutual friends standpoint, and you know, he's the co-founder of Care Force One, so yeah, uh was able to hook us up with a van as well, but he kind of gave us the inside scoop on okay, you have this diagnosis, what do you need to do? What are your priorities? And and kind of how to go from there. So I was super grateful for that connection and everything that came after.

SPEAKER_06 36:10

And Ben was super gracious too, in terms of like really like it was our parents and Ben were the only people that knew, like we hadn't told anyone else. Oh even like some of our really close friends we hadn't even told yet. Um, you know, there was like four months, give or take, four or five months.

Lorri Carey 36:29

Very recent, yeah.

SPEAKER_06 36:31

Yeah, no one really knew. Um and I think it was in part because we we were processing it, we wanted to make sure we got the second opinion in too before we got like put it out there, but then um also it's just it was I it's hard for Hannah because Hannah, like she said, doesn't like to accept help. That's just she she feels guilt over that. Um but for I think for us too, it was just it was really hard to process. I don't know, it was just it was tough and a lot, and um I remember when that post first went out on Facebook. Um, you know, Hannah called me like just overwhelmed at while I was at work because she was gotten hundreds of texts like overnight, like people were like, Oh my gosh, like you know, and um and her mom, so her sister just got done playing professional basketball overseas. Her mom was over in um Luxembourg visiting her sister, and so she won't she's on a different time zone, and people are texting her, uh asking her questions, and you know, they're just you know, so it was just it was awesome because it was so overwhelming. The amount of people that reached out to to Hannah and her mom, and um the folks that reached out to me and uh the questions we got. Like I had a teacher from high school reach out to me and was like, I didn't know that women could get ALS, I didn't know that people this young could get ALS, like you know, like stuff I didn't even think about, but it was it was in those conversations though where I was like, okay, like this is important to share her story because there's so many folks that don't know about the disease and who all it impacts and just how many people are impacted, and um you know, so that's where you know that kind of process has evolved. And um, even now, like if Hannah didn't have to be on camera ever again, I don't think she would, but yeah, you know, she she I push her a little bit and she does it for other people, you know what I mean? And so yeah, I think she's it's it makes it a little more digestible for her when she's like, okay, like if it has an opportunity to help somebody else, like great. But if it was up to her, I think she would never be on camera ever again.

Lorri Carey 38:45

Yeah, she's like, I've had enough of the spotlight. Thank you very much. Goodbye. Oh my gosh. No, it is important, and I think you know, the number one thing about ALS is that 90 percent of the cases are totally random, you know, and age doesn't matter where you come from, the color of your skin, none of that matters, and it's so random, and you don't know what you don't know, and unless you know someone that is living with ALS or that has lived with ALS, you don't understand the impact. And so I think it's important number one for people just to know medically in case they ever get ALS if they recognize it, because you're living proof that our physicians don't always know the answers right away, and also to illustrate why people outside of our community should care and why they should support ALS research however they can, because you just don't know who's gonna be diagnosed next. You just don't know.

Caregiving As A New Husband

Lorri Carey 40:16

So Logan, we were talking about your community and all of the help that has been offered. Tell me a little bit about your a young husband, you're ready to take care of your wife and home and future, like what's going through your mind, you know, with the shift and all the things you're thinking about in the future.

SPEAKER_06 40:52

It's a good question, and I think it changes all the time in terms of what is important. I think for me it's such a struggle in that you know, Hannah deserves the best, and um I tr I try to give the best of what I have to her every day. Um and I know that that's not always good enough, but I try. Um and so, but it's it's one of those things where right, like there's logistics, like obviously this disease is um one that requires a lot of equipment and medical care, and so there's costs associated with that. So, you know, you want to go and work more and and and make money so we can take care of her on that front, and then but also you don't want to leave because your time with her is so precious and you want to soak in every second you can, and then also you know, physically, she does need my help with some things too, right? So, like I can't so in so many ways you feel stuck because you want to you just want to do the right thing and take care of her the best that you can, and so uh every day that's different, you know what that looks like. Um, you know, the good thing is I won the in-law lottery, and my in-laws are wonderful, and so they help me a lot. Yeah, probably probably uh you know, uh we we laugh because sometimes you know my mother-in-law will come will call and just be like, Does Logan need to go out and take a break? You know, like you need a break from Logan, should I send him out of the house kind of thing? Oh with each other so much, you know. Uh and it's uh but yeah, no, it's sometimes we can kind of you know pick eye each other a little bit after a while, but but really with the what I try to remember is I I I first of all in the really challenging times, because there's let let there be no doubt about it. And for anyone listening that is a married couple, um, I love my wife more than any anything. Um, we have hard days, we get upset with each other. Um, we get frustrated because we're both pushing and we're both pushing the in the same direction, but sometimes there's some friction, right? And um, but I try to remember like our vows and remember what love really means and what that what that looks like. And you know, when you get married and you're young, take you know, you say for for better, for worse, for sickness and in health, and you think, oh, like when she has a cold, I'll bring her some ice cream and rubber back, and you don't think you'll be facing a personal illness just a short couple of years later, right? And so um I try to remember my vows on those really hard times, and then in general, you know, I ask myself, okay, like these are the cards we've been dealt. How can I make today the best day it can be for Hannah? Um, and then you know, building on that in terms of long term, like where what does she want? What what what gives and brings Her joy, and how can I help facilitate that and making that my goal, not just daily, but then also long term. And um, that's easier said than done. Like I said, there's there's hard days, and there's times where I'm sure she wants to kill me. You know, we we um we get through it, and um, and I say that just because, like I said, if there's anybody listening out there and yeah, um yeah, know that it doesn't mean that you guys uh doesn't mean that you shouldn't keep pushing and um like it's not perfect, you know. The the pictures you see on Facebook of us throwing our first pitch, that's not that's not lit day-to-day life, right? Like it's it's um it's hard, it's hard. Every day's hard.

Lorri Carey 44:42

Yeah. What does in sickness and in health mean to you now?

SPEAKER_06 44:48

Um definitely, like I said, different than what you what you expect when you first say it. I I think it means, you know, um giving all of what you have that day, even if it's not a hundred percent, right? So a hundred percent of whatever you have. And you know, like we talked about sports is really important to us. And I kind of I always took would tell kids of the college, like I call it competitive greatness, right? Doing your best when your best is required. And you may not always be at your best that day, um, but you have to find that second gear and be able to provide and deliver. And there's because there's days where I get up and I'm I'm tired, you know, I'm cranky, I feel sorry for myself. But the reality is like she still needs me. And so I have to find that second gear to get up and keep going and keep moving. And what makes it worth it is when you get when you get that small moment where you know I get her laughing really hard and she can't stop laughing, and yeah, it takes you back to uh the night at the cafe when we're talking and and sharing just a cool night together, it takes you right back to that moment and um that makes makes it worth it.

Lorri Carey 45:59

So yeah, yeah, just normal see. Just normal see. Yeah, yeah. And you can still have that.

What Support Actually Helps

Lorri Carey 46:07

I would imagine one of the most common questions that the people who surround you and love you have is what can I do for you? What can we do for you? So how would you answer that to your community? What can they do for you?

SPEAKER_00 46:32

I know, like if when when I'm asking that question to others, like I always want to educate myself first. Um and so I I say that because I think education is a big part of it. Like go out there, talk to someone, look it up online, whatever it may be, but educate yourself on what ALS is and how it impacts people, how it impacts family and those around them. But then, you know, just check in with the person, you know, a text or a call goes a long way. Um, and it, you know, it could be to the person with ALS or someone, you know, a family or friend, someone one, someone around them. Um I know some uh some good friends of mine have showed up at my door with food when I don't answer them quickly. It's not very useful for them um for for that. But you know, we do have a um a fundraiser coming up, so that is that's a great way to learn about ALS, meet other people in the community that have been touched by ALS in one way or another, and ultimately, you know, support um us and our our family as we continue to take it one day at a time and and figure it out as we go.

Lorri Carey 48:11

Yeah, so this podcast is worldwide, but tell me about the event coming up, and because I think it's a perfect example of how your community has shown up for you. And then to my listeners, for those who are local in the Cincinnati area, I will put a link in the show notes that can be found on my Facebook page and the website, both at I'm Dying to Tell You Podcast. And there you can find out more information on how to support the event or even attend, if you can. So, yeah, tell me about how this even came to be and what it is and what it has meant to you guys to see this unfold.

SPEAKER_00 49:03

Yeah, so like I said, I've had a few friends that if I don't answer their texts quickly enough, they show up at my house with food or a goodie bag, whatever it may be. Um but I have um one friend in particular, her name's Lexi, and she wanted to do more. She kept telling me, I want to do more, I want to help you more, what can I do? And you know, I I didn't know at the time, but she took it upon herself to host a fundraiser for us, and it is called Hope for Hannah. Um, so it is gonna be on Saturday, July 18th, and you know, we're gonna have dinner, drinks, and just gathering for people who come. Um, and then they um the Hope for Hannah committee has been working their butts off and have collected so many silent auction baskets. I know there's gonna be a live auction for some of the bigger items. Um, there's gonna be raffles and games, just you know, uh it's a place to gather but also have some fun um while supporting a great cause. And, you know, it'll it will benefit Logan and I and um our family, but uh we also hope that it helps raise awareness and get the word out as well.

Lorri Carey 50:43

Yeah, for sure. I love that. And it's gonna be overwhelming, you know, the amount of love pouring in that night. And but I think it's really healthy. It's really healthy for your community because people want to help, they do want to take action, and so attending the benefits, supporting, um, reaching out with items for an auction, stuff like that. That's a form of action for them. It makes them feel like they're taking care of you in some small way, you know. So I'm really excited. Unfortunately, I'm not gonna be in town for that, but really excited to uh hear about it and you know, see all the great things that come out of that night. So yeah.

SPEAKER_06 51:31

Yeah, I say selfishly, we we I mean, I shouldn't say we I just like seeing people, so you know, we're just saying hi and stuff like the resume is really fun to see. Well, get to meet you because I hadn't met you yet.

Lorri Carey 51:42

Yeah, yeah.

SPEAKER_06 51:44

It's just it's fun, yeah. I feel bad though, you know, when when when you're you're trying to get around to see everyone, you feel like you you talk to everyone but simultaneously no one at the same time because you're just going person to person, but right, right, exactly.

Lorri Carey 51:59

You know, so exactly, yeah, yeah.

Don’t Wait And Talk About ALS

Lorri Carey 52:03

What is something that you want others to know about being young, living with a terminal illness as a couple? What's something that people might not know that you want them to know?

SPEAKER_00 52:21

I guess that there are good days and bad days, um as we've said, but just because it's hard doesn't mean it's bad. Um we've really been trying to think of everything as an opportunity versus a challenge or a roadblock. Um we're trying to flip that narrative and say, okay, what what are we supposed to be doing in this moment? What can we give to this moment? What can we learn from this moment? And yeah, kind of asking ourselves, like, what does God want us to do right now? Uh like what's our purpose? Um, and that is something that I know I couldn't do by myself. So, you know, Logan has been very helpful in kind of being with me and helping me along the way. But but yeah, um whether you're having a good day or a bad day, your best friend, that person next to you is is very important. Yeah, absolutely.

SPEAKER_06 53:36

I I would just say, and this is for you know, um, anybody that's listening, whether they um I hope you don't find yourself in the situation. Um but if you have or and especially if you haven't, I guess, like you know, I'm I'm very much like a planner. And um, I think what this has helped me realize, or I wish I would have realized sooner in life, I guess, is two things. I guess one, don't wait. If it's something that you want to do, do it now. Um, because you obviously we say this all the time, but it just becomes more real when you're in this situation. You just never know what tomorrow holds. And two, when you're in the moment, enjoy the moment and take it in for what it is. Don't let yourself be focused on the next thing. Like allow yourself to enjoy the present because if you're so worried about what's next, you'll end up missing out on all the joy that's right in front of you. And so I think more than anything, our life together obviously, like I said, looks different than what we thought it would. And so I just cherish the moments that I have in front of me now more than I ever did before.

Lorri Carey 54:49

Yeah, oh, that's perfect. Thank you for that. Okay, I have one more question from the both of you. So before I let you go, Hannah, what are you dying to tell us?

SPEAKER_00 55:06

I am dying to tell you that um it is okay to talk about ALS. Um, and that's one of the reasons why I love listening to your podcast so much and why I think it's so great. You know, because a lot of people when they check in with you or ask you how you're doing, you can tell when they're trying to avoid it. And they they're probably coming from a place of good intention, right? You know, they don't want to offend you or upset you, but from my perspective, it's a huge part of my life. And it feels weird to not talk about it. And, you know, I actually encourage people to talk about it because the more we talk about it, the more awareness we can raise, and and that's the whole point, you know, raise awareness and find a cure. So um, yeah, I I would say don't be afraid to talk about it and don't be afraid to ask questions. There's no such thing as a stupid question.

Lorri Carey 56:14

Yeah, uh, that's great, and I love that you're inviting people in to our world. Um, but you're right on, like people, and I would say this almost in every episode. People don't know what to do, people don't know what to say, and so in turn, they end up doing and saying nothing at all because of all the things that you said, they don't want to stress you out, they don't want to upset you, they they don't want to say the wrong thing, they don't want to be the cause of you feeling badly, and it is all coming from a place of love, but it's also coming from a place of just not knowing, and so thank you so much for putting that out there, Logan. What are you dying to tell us?

SPEAKER_06 57:03

Well, this is something that we say in our house, and you if you've been around Hannah long enough, you heard her say it before, but I'm dying to tell everyone that you have survived a hundred percent of your worst days. So when you find yourself wondering how in the world am I gonna make it through today, I don't think I can do this, I don't know how I'm gonna get to tomorrow. You've already been there, you've already had that day before, you've survived it, you've lived it, you've conquered it, and you can do it again. And so keep on keeping on.

Lorri Carey 57:35

Oh, thank you both so so much. Thank you for having the courage to continue to speak out, and um always cheering you on, praying for you and your community. Just thank you for being a bright light to everyone. I really appreciate you both.

SPEAKER_06 57:54

Yeah, thanks for having us. It was so great to talk with you.

Lorri Carey 57:56

Yes, thank you so much.

SPEAKER_00 57:58

We appreciate it.

Links, Sharing, And Goodbye

Lorri Carey 58:03

Uh, thank you again, Hannah and Logan. I am forever cheering you on, praying for you and your precious community. Thank you so much for chatting with me. And to my listeners, I will put links in the show notes to where you can get connected with Hannah or Logan, and I'll drop a link to their upcoming event. And even if you're not in the Cincinnati, Ohio area, take a look and see if maybe you can support from afar. And of course, those links will be in my show notes on Facebook and the website, both at I'm Dying to Tell You Podcast. Thank you so much for being here. Hey, if this is your first time tuning in, you can follow pretty much everywhere on social media, all at I'm Dying to Tell You podcast at on Facebook, Instagram, LinkedIn, Twitter, and TikTok. If you like this episode and you know of someone that can benefit from listening in, feel free to pass it on. Thank you so much for being here. Until next time, know you are loved and not alone. Thanks for listening.

SPEAKER_03 59:49

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 a friend. Thank you.