Sam Cunningham: Trusting Your Body, Finding Your Voice, Facing ALS at 35

For six years, Sam Cunningham felt the subtle but persistent signs that something in his body wasn’t right—leg heaviness, twitching, and strength loss that didn’t add up.  As an athlete, he knew his body, but getting answers proved to be a long and frustrating journey.  In this episode, Sam shares what it’s like to finally receive an ALS diagnosis at 35, the emotional weight of being both devastated and validated, and how persistence, detailed documentation, and the right clinician ultimately connected the dots.  We also explore exercise and ALS, adapting to new limits, and how faith, mindset, and unexpected support are helping him navigate this next chapter.  Thank you for listening in.  Hugs, Lorri

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Transcript

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 0:51

Hello, I'm Lori, your host of I'm Dying to Tell You. Welcome, welcome. Hey, if you have listened in over the last six years, you know about her ALS story. Young women who are living with ALS. You know that I have talked to many of them, and occasionally I will connect with a young man who is living with ALS, uh, but not as common. But today I am talking to a new friend, Sam Cunningham, who was diagnosed with ALS at the age of 35. When he was diagnosed, he was an avid surfer, a competitive swimmer, a lifelong outdoorsman who grew up in Southern California chasing the waves and pushing his physical limits. But even after his diagnosis, he has refused to let ALS define him. I am so grateful that Sam is coming on and I'm gonna be able to talk to him, you know, about a different perspective being a young man living with a terminal illness. You know, how did his friends react? What is um his friend's group like now? How has this affected his lifestyle as far as being very active? And what does he think about ALS and exercise? Okay, let's go catch up with my surfer friend, Sam Cunningham. Let's go to our chat. Alright, Sam, thank you so much for joining me today. Uh, where are you coming in from California?

SPEAKER_00 3:17

Yeah, so I live in um San Diego.

Lorri Carey 3:20

Oh, in San Diego, I've never been in San Diego. I I've heard. It's on my list. Alright, so actually my friend, Andrea Lionel Heat, sent me a note and said you should talk to Sam. And I'm like, absolutely. I already follow him and on and on. And I really, for some reason, don't have a lot of young men who uh I talk to. I mean, I've talked to Johnny Rodriguez and uh, you know, and others. Um, so it's really nice to have a young man on here. Yeah, thanks for having me. It's great to be here. Yeah. So you were diagnosed young at 35?

SPEAKER_00 4:13

35, yeah.

The Six Year Road To Diagnosis

Lorri Carey 4:14

At 35, yeah. And your story is unique. And I normally get right into like after the diagnosis, but your story is unique in that it took you a while to get diagnosed. Like, tell me about how that all went down.

SPEAKER_00 4:32

Yeah, let me let me just see how I can compress those six years. Yeah, it took about six years to get diagnosed. Um, you know, I was always an athlete, not a professional athlete, but I was a surfer growing up in Southern California and um a competitive swimmer. I went to the junior Olympics for swimming. And so I've always had, you know, the athleticism. I've always been about movement as medicine. And I um, you know, with surfing and swimming, I had a really strong lung capacity. Um and and then, you know, I also ran and you know, lifted weights, just kind of kept myself healthy. And uh so in 2018, in June, I kind of noticed that a couple things were happening. So I noticed that I was just slowing down, my legs specifically. Um, I don't know if I can explain it as a heaviness or just a slowness, but people would like pass me on the sidewalk. And some old lady, some 85-year-old lady would pass me on the sidewalk, and I'm like, this is strange. And I just kind of I put it, you know, in the back pocket of my my memory and just went, huh? And then I just continued about my business. And um then, you know, I'm I'm a big beach goer, right? Being a surfer. And so we wear a lot of, you know, sandals or flip-flops. What wherever you're from, there's a different name for it, right?

SPEAKER_05 6:03

Yeah.

SPEAKER_00 6:04

And then um so I just on my right side, I kept on just catching myself um tripping on my flip-flops, my sandals. And uh there was no back pain, there was nothing involved where I was like, okay, that's a little interesting. Um, and I guess to rewind a little bit at that point, I was actually, I'd spent some time um deciding whether or not I was gonna go to medical school or physical therapy school. So I had like some like post-baccalaureate classes going, and then I did a whole bunch of hours at like a believe it or not, an orthopedic uh clinic in Hawaii that actually I helped ALS patients. So that's it's kind of interesting. It's very full circle, um specifically with aquatherapy, which was awesome. But anyways, I had so I had a little bit of body knowledge of you know, from my studies, but also I just feel like I'm very in tune with my body and changes too because of the athleticism.

SPEAKER_03 7:11

Yeah.

SPEAKER_00 7:11

Um and so I started to notice those little changes, and like you said, you know, it went further, right? I started getting those cramps um when I would swim specifically, and I was like, oh, maybe it's electrolytes or you know, well, I'll just eat more bananas or whatever. Um, and then I got the twitching in that same limb, and then it jumped, it took about two years to jump to the other leg. And then I so same thing started happening, right? Just also the muscles just started kind of thinning, even though I was continuing to work out. So I got the atrophy, and and at that point, so I did start seeing doctors pretty early on, and I think that was part of I don't know if it was necessarily a mistake, I just felt a difference, I felt a change. So I went in to explore that change, like what's going on with me. And at that point, all I had was like hyperreflexia. So there just was not really much to go off of um besides the hyperflexia. And then I did have an early EMG that revealed some change in my perennial nerve, but it got ignored. Um and that's you know, that's a motor nerve, right? So and it was probably explaining uh, you know, the drop foot that I had at the time with catching my uh foot on, like when I was trying to wear my sandals. Um so I guess to fast forward, I saw a couple more doctors, and um they just uh they threw out weird things left and right. One threw out a conversion disorder, a psychiatric illness that's converting to a physical ailment. Um, even though there were actual like clinical signs starting to happen, they still went the psych psychiatric route, which was interesting. Um and then I then I had one neurologist that kind of just went, huh? And he he was like, Well, you know, you got some family history of Parkinson's, let's explore that. But then uh, you know, he was kind of like at the same time there, you know, you're showing some concerning symptoms for Lou Gehrig's. And so that was the first time I was sent to like an ALS-specific doctor, because this was a neurologist. And so I guess to make a really long story short, uh, it took about 12 neurologists and uh gosh, four ALS specialists to figure it out.

SPEAKER_05 9:56

I've never heard of that.

SPEAKER_00 9:58

And it is it was very concerning because a number of, I'm not gonna name names, but yeah, a number of these places that I went to are supposed to be like very world-renowned facilities, with you know, you would thought they would be very thorough in their approach. And it was rushed. Like you can't rule in, rule out ALS in 15 minutes.

SPEAKER_05 10:21

Right.

SPEAKER_00 10:22

You need to, you you've got to do a four-hour EMG, like you've got to do a very thorough clinical exam. And eventually, and I I guess as a part of that, during that timeline, the symptoms were creeping up into the core. Um, and the one that really scared me the most was the lungs. So, especially being a swimmer and surfer, like I could hold my breath, not to brag too much, but I could hold my breath about three and a half minutes. And when that started dropping and dropping and dropping and dropping, and I was like, oh, well, maybe I'm just aging. And but at the same time, I was like, Well, Sam, you're not 75. Like, what this is strange.

SPEAKER_05 11:03

Yeah. Yeah.

SPEAKER_00 11:04

Um, and this was before COVID, because you know, I know some people got like, you know, lung changes, respiratory changes from COVID. But um yeah, that one really scared me. I had a couple close calls in the in the water surfing with just the lung capacity. Um, you know, when you fall on a wave and you're getting kind of tossed and turned. And yeah, so that was the most worrying, worrisome. But at the same time, I went and started doing pulmonary function tests and they were normal, but I felt a change. So it's kind of interesting. Like if we're talking numbers, my FEC started around 130 plus percent.

SPEAKER_03 11:41

Yeah.

SPEAKER_00 11:42

Um, which is that's very good, right? So they're not even gonna like look right at it. And over time, obviously, it started dropping and it um was eventually a part of the diagnosis. But I I just had a higher baseline. So it just took me normal, it took me uh a while to get down to uh like a below normal uh for lung capacity FEC. Um but yeah, so eventually 12 doctors later, um, and then the four four or five uh ALS specialists, it I finally got diagnosed November of um 2024. And it was because this was the first time that someone did a thorough clinical exam, you know, a very, very lengthy lots of data points, EMG, NCV, um, and another a thorough pulmonary function test, too, with a little bit more of a neuromuscular angle to it. And it was kind of shocking to me that that was the first time that all of that in a thorough capacity was done.

unknown 12:54

Yeah.

SPEAKER_00 12:55

What were these other physicians doing? They just didn't, they didn't, I don't, I don't know what it was. I don't know if it was just part of my medical records when I would send them and they would see the psych. Oh, you're just depressed. I'm like, no, I mean, I'm not depressed, I'm frustrated. There's a difference between frustration and depression. Um and I guess we rewind a little bit. Um about 2021, so about three years, three years into symptoms and then three years before diagnosis, I actually I figured it out. I did my own research, I just put together a spreadsheet of my clinical signs and symptoms. I took that spreadsheet to all my doctors. I'm like, you know what? One of these neurologists are gonna appreciate this. Like one of them, I'm not a Googler, I'm not, I understand how to like research, like in like read and interpret research.

SPEAKER_05 13:54

Yeah.

SPEAKER_00 13:54

Um and I would just try to explain that to doctors, like, I'm not a doctor, but here you go. Here's my timeline, here's my story. And hopefully it'll help you help me. And the one, you know, my eventual diagnosing doctor, he appreciated so much. He was like, This is so helpful. I'll need all the backup, of course, with the notes of when this happened and the timeline and um, you know, what facility this was from, what physician. But this is the most helpful thing ever. Um, so you're right. This is gonna help me help you. And in that first appointment, he didn't diagnose me right away. Uh I asked him, I was like, hey, what's on the differential? What are you looking at? He's like, well, I'm most concerned for motor neuron disease for sure. That's the highest concern. Uh, we're gonna do a couple more genetic tests just to see if it's not something else um that might mimic uh motor neuron disease. I'll I'll never forget it. In October, he called me and he was just like, Hey, I need you to bring your uh your family down to the next appointment. And I was like, Oh.

Lorri Carey 15:07

And you're like, no, no, never mind.

Being Dismissed And Building Proof

SPEAKER_00 15:10

I know what that means, that you're not just bringing them down. Um so yeah, I mean, when I was diagnosed, it was it was kind of a mix, and I don't know if you felt the same way, but like it had been so long that it I was validated. It's a horrible, it's it's a terrible diagnosis, but I it was validated, and then there was this strange like peace. I know that sounds strange when we're talking about a terminal illness, but there was a piece because the unknown itself was crippling.

Lorri Carey 15:47

Yeah.

SPEAKER_00 15:48

Yeah.

Lorri Carey 15:49

No, I get it. And I just uh episode I'm gonna be putting out soon. Um I talked to a young lady who is 33, her husband died a year ago from ALS, and she was talking about how when he got the diagnosis, he was relieved, and he said, I'm relieved. She's like, What? You know, and and I said, I get it though, I get it. And mine was short. Mine was, you know, I originally went to the doctor in December. I was diagnosed the first time on Friday the 13th in February of 2004.

SPEAKER_03 16:30

Oh, yeah.

Lorri Carey 16:30

Yeah. Yeah. And um, so mine was quick, but I still had this sense of relief in that I was able to shift my mindset. Like, and at that time my sons were 11 and 13, so I went into mom mode. Like, okay, I'm not worrying about me anymore now. Okay, how am I gonna do this? You know, what's gonna how it's gonna affect my sons, and blah blah blah. So I kind of get that, yeah. Yeah. Yeah, I was just wondering if there's anything, you know, after you got that confirmation that has stuck with you, like I think something that stuck with me, because it's a part of my story, is and that the diagnosis was actually done pretty well.

SPEAKER_00 17:23

I know I've talked to some people that had a not a great diagnosis experience, and it was just kind of negative, and like, no, you got on average three to five years, like just you know, here different things that can support you or whatever. Yeah, mine was a little bit different. Um, and I kind of I kind of ran with it. He's like, You're doing, you do have ALS, but you're you know, you're more upper motor neuron dominant, and that means that you're hopefully gonna stay a little bit slower. Um and so I kind of just I took a positive, you know, from a negative, and I just ran with it. And that's that's all I could do that day. And yes, I absolutely cried, right? My parents were there. It's devastating that you know it's been so long of these symptoms, and um, it's you know, it has created some strife with family members and stuff, and it was just it was definitely emotional. But um, I just was like, you know what, I gotta take the good out of this, and that's the fact that it's slow, and maybe the fact that it's slow is I can help myself and others, right? The fact that it's slow, let's take advantage of that and every aspect of that to see if we can explore what makes this disease tick. Like, what are the commonalities, you know?

Lorri Carey 18:51

Yeah. So it sounds like even though it took you a long time to get to that diagnosis day, that you felt like that physician handled it pretty well and allowed you to have some kind of hope in the middle of a really dark, dark diagnosis.

SPEAKER_00 19:13

So I guess on that point too, is like when you are diagnosed, you I think something that I wish like someone would have told me or or provided to me was some kind of instruction manual on trying to find that marriage or the balance of hope and reality.

SPEAKER_03 19:32

Right?

SPEAKER_00 19:34

The reality is this the average ALS story, right? Three to five years after diagnosis. But then trying to, you know, find that balance of both reality, but also the hope that maybe that's not my story, or maybe maybe it can be slowed down so much that it's reversed. I don't know. You know, you I have to hold on to that, right? For me and for others.

Lorri Carey 20:01

Oh, I like that. You got me thinking on that. Can we talk about? Okay, first of all, your diagnosis just sounds so similar to mine. So I hope you're on a path to, you know, chase me in 21, 22 years. And I was always very active as well, not to the level that you were, but like since I was a kid, always softball, tennis, yeah, all the things through high school, college. I'm always inactive.

SPEAKER_00 20:34

I love tennis.

Lorri Carey 20:36

I'm good. I wish I could play. Um so can we talk about your perspective on exercise and Alice? And I keep thinking about like the right professional to talk to about this, and you know, I hang with like Andrea Lionel Pete, and I got a trike because she had a trike, and you know, we ride together, and I just feel like exercise has been helpful to me, and maybe it's just helpful mentally, but it has been absolutely everything to me. And when I was diagnosed, again, they literally told me do not exercise, do not exercise, you are gonna burn up metaneurons that eventually you're going to need to walk. And I was like, oh crap. So I did nothing for a year. I did nothing. They put me on Lexapro, then I didn't want to go on. I gained 20 pounds and a small frame anyway, and so for me that was a lot, and then I was like, Okay, I feel worse about not moving than having this disease right now. And then I started to do what I could, however that looks like, but something. So tell me about like right now where you are, how you feel about that.

SPEAKER_00 22:18

So exercise and AS, that's a very, very interesting topic on multiple levels, right?

SPEAKER_05 22:24

Yeah. Yeah.

SPEAKER_00 22:25

So I'll start with the first, I guess the the first item. I think exercise is the reason why I, you know, I think movement is medicine. And I do think that my high the high baseline from you know years of exercise is the reason why my disease is a little bit slower. Um, whether or not that's true, that's that's just what I feel. And I'm similar to you, whereas exercise is both, you know, physical and mental, right? It it gives you confidence, right? It increases, you know, uh, you know, you get like a runner's high, if you will. Yeah. Right.

SPEAKER_05 23:07

Yeah. Yeah.

SPEAKER_00 23:08

And you get the adrenaline, and it really helps the mind, right? Which is a very crucial part of ALS. But then on the other hand, I think there's a fine line. I think that there is a reason for you know athletes, there's a commonality of, you know, athletes being a little bit more susceptible to ALS. And you know, whether or not that's there's a mix of genetic, uh genetic component or an exposure or you know, just overdoing it, right? I know that there's a lot of research going on right now with how like athletes and veterans and whether it's the an exposure environmentally or just doing too much, right? And I going back personally, I do feel that I potentially overdid it. Um you know, there's at one point in my life I was I owned a CrossFit gym in Hawaii, and which was a blast. It was awesome. I I owned a I owned a business uh in my early 20s, which was it was uh definitely a learning experience uh while going to school at the University of Hawaii. It was long hours. So on top of my schoolwork and attending class, I was you know coaching six classes a day. And when you coach CrossFit, you are moving and you're demoing movements.

SPEAKER_05 24:38

Oh yeah.

Diagnosis Day And Finding Peace

SPEAKER_00 24:39

And some of them are very, very complex. And your body's not always very warm, right, to perform those movements. And then I would do my own workouts too. So I do feel like part of my no one's gonna be able to prove this, but I do think the body, especially if there's some genetic components going on, can only handle so much. Um, you create the oxidative stress, which I know is a huge you know, harbinger of ALS. And you don't athlete, you know, we didn't, I didn't rest enough, right? And so I do think that that's part of it. But even moving forward now, you know, having the diagnosis, I haven't stopped moving. I've adjusted, I've adapted what I do, and do I lift heavy weights anymore? No, I don't. I do more like lighter weights to work on keeping lean muscle.

Lorri Carey 25:42

And are you making that adjustment because of your ability change, or are you making that adjustment based on being cautious?

SPEAKER_00 25:57

Um so I'll start with ability and then I'll go into cautious. So ability, you know, I've lost a significant amount of strength, right? And so my kind of barometer for when I've overdone it is like I'll just give you an example. Like I'll, you know, do some bicep curls or whatever. It if I'm lit up in muscle twitches and cramps after I know that I've overdone it. And so I just have to find that sweet balance or the sweet spot, if you will, uh, for the next time that I do those bicep curls, whether it's, you know, a lighter weight, less reps, or some combination of that, and you're just trying to find and adapt to that. The one that gets more cautious is surfing. Because my like my lung capacity has dropped so much, like I I need to be very um mindful of that out in the water because of you know the potential to you know inspire water and drown, especially when you're in a little bit bigger surf and the waves are holding you down, right? You fall and you're so yeah, it's kind of a mix.

Lorri Carey 27:11

But what is your FVC right now?

SPEAKER_00 27:14

My FVC is 82, I believe.

Lorri Carey 27:20

Yeah. Yeah, still functional, right?

SPEAKER_00 27:23

So it's still pretty good. But I think also because I had that high baseline of 130, I you I feel that you know that 50% drop or whatever it is.

Lorri Carey 27:34

Oh, I get it, I get it. I was over 102 when I started and I'm at 40, but I've been at 40 for five years. You know, so that's one thing. You know, I know it's hard not to get fixated on the numbers for sure. But um what do you miss most that you can't do full on physically right now?

SPEAKER_00 28:03

So speaking of surfing, I miss like really long surf sessions and and big waves. Uh I loved surfing big waves, but now there's a safety component to it. Um not to say that I haven't surfed big waves recently. Um I was kind of like, well, you know, I'm gonna do it, and uh whatever happens, happens. But um I miss running. Um I love that runner's high, which is crazy because most swimmers don't like running at all. We are we're water, water people, not land people.

SPEAKER_05 28:41

But okay, yeah.

SPEAKER_00 28:43

I actually like running. I love the runner's high and um yeah, the way my body feels after and like trail running and stuff like that. And I there is no way. I gave up running probably, I want to say it was two years in. I was just tripping too much. I had so much spasticity in my legs that I they just felt like lead.

SPEAKER_05 29:06

Okay.

SPEAKER_00 29:07

Um, and so I was like, nope, this is not safe. I've I think I fell like three or four times running, and I was like, nope, this is not. But I do miss it. And I miss tennis.

Lorri Carey 29:18

Yeah. Wow. So can you just describe like where you are physically with ALS right now, then? You know, like what you're able to do or not do on your own.

SPEAKER_00 29:32

Right now, my ALS is um, it's you know, because it started in the my legs, I I can still walk. I can walk very I just walk very slowly. I have to walk with intention. And if there's any kind of uneven footing or like cracks in the sidewalk, then I have to be extra careful because I've fallen a few times for that reason. The lungs right now, if I overdo it like lots of conference calls, I can I can really feel that fatigue in both the bulb or musculature, like up in the throat and the tongue, and then obviously down in the diaphragm as well. It kind of feels like I ran a marathon after a couple of conference calls. I love this podcast, but for example, like I'll need to rest, right?

SPEAKER_03 30:23

You know, yeah.

SPEAKER_00 30:24

We just we're we're running a marathon right now. Um and then at night, I don't have a bipap, but I'm pretty close to needing one because I'm really starting to get infected by you know, when you're you lose the help of gravity when you go back. And I'll probably just, you know, get an adjustable bed or something to start with.

Lorri Carey 30:48

But yeah, yeah, I wouldn't recommend that for sure.

SPEAKER_00 30:51

Yeah, I'm pretty mobile with my hands. Um, it's more clumsiness at this point, it's more dropping items, losing that strength, um, a little bit, the muscle atrophy in the hands, but I can still use them. It's just more of the fatiguing element right now of like, all right, you've overdone it. You can barely hold on to a taco at night for dinner, right? So that's kind of where I'm at with the hands. And then speech is pretty strong. Yeah, it's just again, if I do a lot, I'll kind of feel that fatiguing and like almost like my tongue feels heavy, hard to describe, but yeah, no, heavy.

Lorri Carey 31:33

Every time you say heavy, I'm like, yep, I can get that like heavy link. It's heavy, yeah. Heaviness when it's light.

SPEAKER_00 31:38

You're like, wait, this is light. Why is this real heavy?

Lorri Carey 31:43

Why, why? Oh, oh my gosh. Um, and so we talked about the physical part of ALS. What about the mental part for you, especially being so young?

SPEAKER_00 32:01

Yeah. The mental side of ALS is um, it's definitely it's created a lot of chaos, I'm not gonna lie. Um, it's been a roller coaster, right, since the diagnosis about a year ago. Some days I'm like, you know, kind of gung-ho and like, I'm gonna beat this, and like I'm gonna figure it out. And then other days, you know, you have your down days are like, this sucks. Or you got a new symptom. And, you know, I I heard this on, I don't know if it was another podcast, but like ALS stands for always losing something. Like you're always just you adapt to something, and then you're like, right when you adapt to it, something else goes away. And you're like, oh man, this is just exhausting.

Lorri Carey 32:47

And you feel so defeated.

SPEAKER_00 32:49

You feel defeated because you're like, man, um, I just got used to this. Now this is happening, or I just got used to this adaptation, now it's changing to this adaptation. But to kind of battle that, like, I do kind of struggle with my faith a little bit. I think it was like I I grew up Christian, um, but I'm trying to work on it. I think what really kind of um made me a little bit upset is the fact that it was just like, what was the point of the six years? Like, why was I quote unquote tortured?

Lorri Carey 33:26

Yeah, that's that's the first thing that just came to my mind.

SPEAKER_00 33:29

Yeah, what's the message there? And so I'm I'm working on it, working through that, um, trying to get back to faith and everything. Um, I'm a little more like spiritual for sure. Um, but I also do like just like the physical side is so important with ALS, the mental side is too. I do a lot of meditation. I do um uh actually Johnny got me into uh qigong. Um and then I do Tai Chi as well, like a meditative movement. And I feel like it keeps me like very in touch with you know my breath, my body, um, finding that connection between all these different muscle groups that may be struggling, but uh trying to bring awareness to them to keep them going. And I do yoga too. I love yoga. I feel like yoga is obviously good for toning down that spasticity, but also meditative, right? You're moving with intention and um I love that.

Exercise With ALS And The Line

Lorri Carey 34:30

And I think mentally, whatever you can do that is helpful, do it because those are the things that you can control. Yeah, you know, you can control your mindset. I mean, not that doubt and fear and questioning and all that is gonna creep in, but you do have the ability to change those thoughts. You know. Of course. And I like how you said about your faith that, you know, what were what were those six years about? And it's okay that you haven't figured that out yet. And maybe you will never be revealed to what that is, but maybe you will, you know, that whole piece might be yet to come. And I think you just have to have faith in that. And I mean, just you coming on the podcast today, to me, is like pretty darn powerful for you to be here to share a story. So yeah.

SPEAKER_00 35:35

I think that what you're doing is amazing and like sharing everyone's stories, and they're all different, right? Kind of like we're all just kind of different snowflakes, right? We're yeah, fallen from the sky, we're different snowflakes. Yeah. And I think the awareness of that, because there's so many different things that are important about the awareness of ALS, is the awareness of the science of it, right? What causes it, right? But also awareness of all these different stories, because that not only helps loved ones or whatever understand it better, um, but also it awakens people into realizing that, like, oh, this is like everyone is completely different. And maybe that's the key. Like everyone's so different. Like the research right now is, you know, maybe we need to just find commonality, right? Like, all right, Lori, like, what is your background? What you know, what does your genome look like? And then see if like that sample, because like, you know, I know that there's focuses on like maybe I'm going down a rabbit hole, but there's focus on athletes, veterans, yeah, sporadic, familial. It's like, well, wait a second. I understand that those are different subtypes and probably different genotypes or phenotypes, but there has to be a commonality between all of those groups.

SPEAKER_05 37:06

Yeah, yeah. Yeah.

SPEAKER_00 37:08

And kind of just wanna rabbit hole there, but I'm passionate about it, right? We need to change the ending. Yeah, right.

Lorri Carey 37:17

And I like that you think knowledge, you know, like me. You want to know, and what can you what can you do with that information and how can you help others? So yeah, if we just had the answers, that would be amazing.

SPEAKER_00 37:32

I don't mean to be insensitive when I think it can be slowed or you know, halted or anything, because you know, I know so many people have lost countless loved ones to this beast of an illness. But I also do think that if we do, you know, get there, that will that will help those people too. Because, you know, that that's probably what their loved one wanted. Just like I want that for you, and I want that for Johnny, and I want that for everyone. Like we want it gone.

Lorri Carey 38:06

Yeah, for sure. For sure. Because you are a young man living with a terminal illness. Can you tell me a little bit about your friend group, like your social circle? Is that weird? You know, like, do they get it? What's how does that work?

SPEAKER_00 38:30

I'm I'm gonna answer that question and I'm gonna kind of lead into something similar to it. Um the friend group, it's been interesting. I feel like just like whenever you're diagnosed with, you know, let's, you know, a stage three cancer or stage four cancer or something, it's the people that like you think maybe would have been in your court or supportive of you suddenly don't know how to approach you, and they either, you know, kind of lightly ghost you, or but then on the the flip side, you have people that you may have not talked to in a while, or you know, I've had people from my high school that I haven't you know talked to in 18 years, and you know, they message me on Facebook like, you are such an inspiration, like that's incredible. You know, the people and then like some family members, like people will surprise you, they will come out of the woodworks, and it's probably not the person you thought. And um, that doesn't mean I've lost friendships, I just think that my friendships have changed. Um does that kind of answer it? Yeah, yeah.

Lorri Carey 39:49

No, I get it, I get it. And I feel like I say this in almost every episode or everyone I talk to lately. What I have witnessed is that people don't know what to say, they don't know what to do, so they end up doing nothing at all. And it isn't about not being kind or not loving you, it's about they are fearful of hurting you more than you are already hurting. And so I say, don't be that person, like lean in and do what's on your heart and say what's on your heart and be a friend. Like, don't ghost them and don't not invite them and don't treat them differently. Just be there as you would have normally. I've had so many guests tell me that. Guy guests, like I want my friends to come and show up like they always have shown up. If they come over to the house to watch football, come over to the house to watch football. Yeah, you can ask me how I'm doing, but let's watch football. Like, just let's go for a hike, let's go surfing, let's do the things that we have always done together.

SPEAKER_00 41:19

Yeah, yeah, of course. And I think also kind of playing devil's advocate is it it forces them to kind of face their own mortality, right? Which they may have not faced that yet.

SPEAKER_05 41:32

Yeah.

SPEAKER_00 41:32

And so that's kind of a it it's a fear factor, right?

Lorri Carey 41:37

Yeah, especially me and 35.

SPEAKER_00 41:39

Yeah. Well, I mean, it definitely has changed the the dynamic for sure, because especially, you know, the fatiguing element of ALS, right? Like I don't mean to be flaky, right? But sometimes I'm like, oh, I can I'm gonna, I'm gonna say I'm gonna go, but just please be mindful that I need to make a game time decision when it comes to that Saturday. Yeah, what does that look like? Like, do I have is my aspaste really bad? And am I gonna be like, you know, trying to like hold on to furniture and couches to get around your place? And are there gonna be a lot of people? Because if if so, that's overwhelming. And then what does it look like with you know, I have a hard time with if I'm in crowds and I have to like walk and dodge people, like that's just so much on my body. Um, and so I'm like, all right, well, I if I go to this, I'll just sit the whole time. Yeah, is that gonna be enjoyable? So I don't know. Yeah, it's definitely changed the dynamic. It's changed to your point, a lot of people don't understand like more of the iceberg side of ALS, like until it's very, very visual and obvious, like it has that strong fatiguing element to it. Um before you know, you see all the you know above water iceberg effects of ALS. There's all the everything that's below.

Lorri Carey 43:09

Yeah, yeah. I love that. I love that talking about what people don't see. And I'm always late. I'm always late. And I probably have always been late, but I'm even later now, it seems like. And I said to my sister the other day, I'm like, I'm sorry, I'm always late. But like, it's hard for me to remember that the things that used to take me five minutes don't take five minutes anymore. You know, or like, oh shoot, I was gonna wear that, but I can't snap that, or I can't do that, or you know, it just seems like it's one thing after another. And those are really minor hiccups with ALS, I will say. But yeah, those are things that just people don't see it, you know, take into account. Oh yeah. Um if they aren't, you know. I haven't lived it.

SPEAKER_00 44:01

So another thing I I kind of wanted to talk about too, because going beyond friends and um like the work the work side of it, right? The work family.

SPEAKER_05 44:11

Yeah.

SPEAKER_00 44:12

That's another surprising one, right? Like you don't you wouldn't think that your your coworkers would be so they would turn into friends and a support group, right?

Lorri Carey 44:23

Yeah.

SPEAKER_00 44:24

And that's what's happened. And it's incredible. I I think it's very rare.

Lorri Carey 44:28

Yeah, and you're still working right now, right?

SPEAKER_00 44:31

I am, yeah. Luckily, my um company let lets me work uh full time from home. Um which is really nice. So wow.

What ALS Feels Like Day To Day

Lorri Carey 44:43

That's great. That's great. And you're seeing people show up, and then you're like, oh, I never thought they were, you know.

unknown 44:49

Yeah.

SPEAKER_00 44:51

Yeah, we did a um, I don't know if you saw it on socials, but um I partnered with uh Auggies Quest. So my company, CW Driver, partnered with Augie's Quest and did a um an ALS walk.

SPEAKER_05 45:05

Yeah.

SPEAKER_00 45:05

Um and it raised$78,000. That's amazing.

Lorri Carey 45:10

Oh my gosh.

SPEAKER_00 45:11

It was the first one.

Lorri Carey 45:12

Oh and so it was just your company.

SPEAKER_00 45:17

That was it.

Lorri Carey 45:18

It wasn't like an August Quest event. It was benefiting August Quest, but it was your company doing it in your audience. Oh, that's amazing.

SPEAKER_00 45:27

Yeah, I think we had 350 people.

Lorri Carey 45:30

What?

SPEAKER_00 45:31

Oh yeah, enough to I was I was I was uh, you know, this this lovely disease and what it does to your emotions, right? Kind of like the laugh-cry emoji.

Lorri Carey 45:44

Oh yeah. Oh, that's great. I love that. It's really cool. What is something that your friends, your coworkers, your family, what is something that you want to come to their mind when they think about you down the road that isn't anything to do with ALS? Like it's just to do with Sam and who you are. What do you want them to think of?

SPEAKER_00 46:10

That's a tough one. Um I I I think I want them to, you know, think of me as that I loved life, right? That I love people, networking, making a difference, um, f with you know, from a personal standpoint, but also in in work too. Yeah. I and then I I guess leading into some ALS, I want people to know that I I'm not gonna just like give up.

Lorri Carey 46:37

Yeah.

SPEAKER_00 46:38

He never gave up.

Lorri Carey 46:39

Yeah. He never gave up. He was an example of hope. He led his life with hope. That's what I would say, just knowing you for a short time. For sure. Yeah.

SPEAKER_00 46:49

That's what I do, that's what I'm doing right now.

Lorri Carey 46:52

Yeah, yeah. And you inspired me. So thank you so much for that. I appreciate it. I really enjoyed chatting today and getting to know you. And I hope that we are able to stay in touch. So, Sam, what are you dying to tell us?

SPEAKER_00 47:09

I'm dying to tell everyone that ALS is a it's a it's a delicate balance of hope and reality, but I really do think that hope can win.

Lorri Carey 47:22

I like that. Yeah. And I think it can win. It can't care, but it sure can help.

SPEAKER_03 47:30

Yeah.

Lorri Carey 47:31

Yeah, and let's stay in touch.

SPEAKER_03 47:32

I mean, absolutely.

Lorri Carey 47:33

We can always pop on, even if we're not recording, you know. So I'd like to keep in touch for sure.

SPEAKER_00 47:39

Sounds good.

Lorri Carey 47:40

So, okay, well, thank you again. Thanks, Lauren. All right, okay, all right, take care.

SPEAKER_03 47:46

Bye.

Lorri Carey 47:46

All right, talk soon. Bye-bye. Thank you, Sam, for coming on. I really appreciate you sharing so much of your experience and your perspective as you continue to, you know, figure out life with ALS and everything that comes with that. So thank you so much. To my listeners, I will be putting links in the show notes so that you can get connected or you can follow Sam and what he's up to. Maybe he'll have another event if you live in California and you want to attend, or you want to support from wherever you are. And you can find my show notes on my website and Facebook page, both at I'm Dying to Tell You Podcast. If you want to get connected or follow me, see what's coming up next. You can find me on all social media outlets, all at I'm Dying to Tell You Podcast. Thank you for being a part of this very special podcast community.

SPEAKER_01 49:19

Okay, until next time. No, you are loved and not alone. Thanks for listening.

Christian Carey 49:34

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 liked the show, please subscribe to the podcast and share it with a friend. Thank you.