Swiping Right with ALS with Brooke Eby

Andrea: Welcome to those who can't do, I am your host, Andrea Forcum. And today I have Brooke Evie with me, who I have been following on TikTok and Instagram for quite a while and who is ALS is number one enemy, um, Brooke, welcome. Thank you so much. I'm so excited to have you on. How are you today? 

Brooke: I'm good. I mean, there's a fire alarm going on next door.

We're just hoping. I'm like waiting on bated breath for it to start again. So if I look a little nervous, that's why. 

Andrea: That's right. Just nervously awaiting further fire alarms. I know. I feel 

Brooke: like I sound like I have like adrenaline in my voice. 

Andrea: And we're reasonably sure there's no actual fire. We think it's just, she's not like putting her life on the line for this podcast episode.

We're pretty sure at this point. 

Brooke: Yeah. If you see some guys come and like lift me and carry me 

Andrea: out, then it's time to worry. Yeah, exactly. So now when I first came across your videos on TikTok, it was Dating content, actually. And you were sharing some of the feedback that you were getting about feedback. I love that.

That's a gentle way of saying it. Um, do you want to talk a little bit about what those videos were and how you got started making them? 

Brooke: Yeah. So I, I mean, for context, I was diagnosed with ALS in March of 2022 and I was like a fairly normal person before that. Dating was not, you know, anything like where you had to be strategic or like really think about it.

I was just like normal in my twenties. Um, and then once I turned 29, I started limping, uh, got diagnosed at the age of 33 and I was single and I'm like, well, this should be interesting. So at first I wasn't using any kind of like mobility aids, um, but graduated to a cane and that's when I think I was making the most dating videos was when I was.

Telling people that I was showing up to the first date with a cane, which like, I would try to make it a funny outreach because I was like, that way, you know, maybe they'll take it lightly. Like, it won't be as awkward. So I was doing these like weird first lines on these apps and then getting some hilarious responses.

So I just was like, I should post some of these, just like, see if people take to it and. 

Andrea: Apparently people did. They did, for sure. Now can you go back and talk a little bit about your journey? Because like you said, you were, you were 29 and you just started limping and that was your first tell that you had ALS?

Brooke: Yeah, it's, it's always so spooky to hear people's first symptoms because it's like my pinky twitched and then you get a terminal diagnosis. Like it's always something so little, um, which is probably like, you I'm probably terrifying people by saying that you probably don't have any, but for me, like my, I started feeling like my calf was tight in like 2017, 2018, um, and then I was moving from San Francisco to New York for work and walking in New York city, like, you know, when something's wrong pretty quickly, because people will tell you, um, and so like the tightness, I guess, just turned into like.

My foot kind of slapping on the ground, then it turned into like a full fledged limp, um, and then it got to the point where I like could not keep up with co workers and people were pointing it out all the time, so, um. Yeah, that's, that's how it all began, just a little limp. 

Andrea: Yeah. So before that, had you heard of ALS?

Was it even anything that, like, you were aware of? 

Brooke: I don't think so. I never got nominated for the Ice Bucket Challenge and it really bothered me. You were like, listen, this is not fair. That's like, I do like a five things that definitely did not cause my terminal illness. Series and one of them is that like, I was really upset about the ice bucket challenge, so I feel like it was like, don't worry, your your time is coming.

Don't worry. . Oh no . 

Andrea: Oh my gosh. That, 

Brooke: that always hurts people when I make that joke. But I think it's funny. 

Andrea: Yeah. Yeah. So now how has it progressed because you, you know, you were 29 when you found out and you're 35 now, or you were 29 when you had your first symptom. Yeah. So you didn't even find out until you were 32.

Brooke: 33. 

Andrea: 33. Okay, so it took a long time for you to get a diagnosis. 

Brooke: There's no like test for ALS, which is weird. Yeah. There's um, it's a process of elimination really, like there's no blood test that you can take or there's nothing you see on like an MRI or an x ray. It's just you, they, doctors basically have to eliminate every other option and then if you eliminate those and you pass certain clinical tests, that's when you get a diagnosis.

So, the four years, I think, for me, that is on the longer end of the range, but I think it does usually take like a year ish. 

Andrea: Yeah. And did it take so long because you were so young? Is it rare for people to get ALS at such a young age? 

Brooke: Um, I think that's the impression. I don't think that's the truth, but I do think, like, even I, before getting diagnosed, thought it was like old men, an old man's disease.

Because, like, the names we associate with it are Lou Gehrig and Stephen Hawking, which I think are not old, but you just kind of picture, like, men, um, and so, yeah, I think it was a combination of me being young and them wanting to be, like, very sure before giving me the worst diagnosis you can give someone, um, but then also, like, my body wasn't really giving the data it needed to give, like, my.

Symptoms, usually ALS progresses so fast, like within, you can be dead within a matter of months. But with me, I was just limping for four years on one side and they were like, this is, you know, like maybe you're just a unicorn where it's like you're just having symptoms in your leg and nothing else. Um, but then beginning of 2022, I started having them in my right foot and that's when we were like, all right, game on.

Andrea: Yeah. That is wild. So now what are some misconceptions you feel that people have about ALS that you would like to clarify? Because a majority of our listeners are educators and, you know, work with students and might even teach about, um, disorders like this. So what are some misconceptions you think people have about ALS?

Brooke: Well, what do you think about ALS? And then maybe we can. You know, I felt some because I could tell you the things I got wrong, but it was like everything. 

Andrea: I feel like I've got a little bit of a cheat code because I've been following you since you had that first limp and you were doing all those videos and I've seen and I've also done a bit of research on, um, like the speed of, of the disease and, and all of that kind of stuff.

I think that, um, I had, um, Kind of transposed a little bit this disease with other, um, neurodegenerative type diseases, um, like MS and then also, um, the one that is, has very characteristic shaking, um, I'm Parkinson's. Yeah. I think that I had those kind of mixed up. Um, and I don't know if Parkinson's is more common.

I've just known a lot more people with Parkinson's. Um, but in my mind, it kind of like all fell under the umbrella because it all, all of those diseases seem to kind of take similar symptoms at least at first. 

Brooke: Yeah. Yeah. And I, I honestly, I think a lot of them probably still fall into a similar category for me.

Yeah, like I, I certainly don't know a lot between like all those other, uh, neurodegenerative diseases. But the thing that like really surprised me is I thought it was this very genetic disease. Oh. In 2020, so two years into symptoms. I went to a neurologist who's like supposed to be the top guy at Hopkins.

Andrea: Yeah. And 

Brooke: he gave me this, an EMG, which is like a really unpleasant test. They, they basically poke needles into your muscles and then have you flex them. And they like, check the communication between like your brain and your muscles. I don't actually know. How? Not a doctor. Right. Your, your poor teacher listeners are like, um, but they did that.

And he was like, have you ever heard of ALS or Lou Gehrig's disease? And I was like, Yes, and I definitely don't have it. And he was like, well, you know, it's, it's on the table. Um, but we want to give you a genetic test. So like, I'm going to send you downstairs, get the genetic test. And so I take this test, it takes four weeks.

And when it came back, it was clear, like no genetic markers. So my family celebrated, like we thought we were fully in the clear. Yeah. And then. Now, like years later, come to find out 90 percent of cases are not genetic. So like the doctor, I don't know, he probably did explain it to me and I was just like so mad at him.

Yeah. And he was trying to put this on the table that I, I ignored it, but that one I think really surprised me. It was that like 90 percent of cases. We don't know where they come from. Like that's, that's crazy. 

Andrea: That is wild. And it's wild for him to be like, better just, you know, cross this one off the list by getting you a genetic test.

Like, 

Brooke: Yeah, I think it's like the genetic versions. It's, they're, it's like very bittersweet and, uh, which is probably not the right term for it, but like, genetic versions wipe out entire family lines. Like there's, it's horrible. But there are also treatments now that target certain genes, like it's easier to treat something when you know what's causing it.

Andrea: Yeah. 

Brooke: So I have a feeling he was just looking to see like, if she has this genetic version, can we start her on a treatment? But I thought it was like, we're getting, we're testing you for ALS. Right. I thought I. Yeah. I thought I passed. 

Andrea: So what were some of the other things that they kind of put on the table when they were going through and trying to figure out what, what was going on?

Brooke: Everything. Oh my gosh. I remember at one point, like when I first was having a limp, everyone thought I was just like pinched a nerve in my back, um, or had like nerve damage from something, but every single test was coming up clear. Um, so that's when they started getting a little more creative. It turned into like an episode of house.

Like at one point I remember they mentioned polio and I was like, okay guys, like, and then they also, they gave me one, uh, possible diagnosis and they were like, this is largely found in Japanese men. I'm like, what? Like every single time I'd go to the doctor, I would leave being like, this is just my life now.

Like, I'm never going to figure this out, um, until, you know, I did and I wish I did it. 

Andrea: Right. Yeah. No kidding. Now, what were you doing for work, um, during that process? 

Brooke: So I'm at Salesforce. I've been there for eight ish years now, eight and a half, maybe. So I was, I'm still working full time, still doing the same thing I was before.

Andrea: Awesome. And I saw a video that you did on some things that Salesforce is doing to work with you on like basically creating more attention, potentially more funding for ALS research. Do you want to share a little bit about that? 

Brooke: Yeah. So sharing about any kind of diagnosis with work is kind of Uncomfortable because it's like there's a personal and a professional life that everyone leads.

Yeah. And this, I was like, well, I guess I'm just blurring that line because there's no way to, that I can hide it. Um, but on camera like this, if you didn't know better, like you'd think I was just maybe in like a gaming chair or, you know, like I, I think I could, I still sort of virtually, and I've been remote since COVID.

So like. I didn't really know how to share with people and bring it up as I was meeting people via Zoom like new hires and stuff. So I decided to just post on LinkedIn and like one fell swoop it, which was pretty scary but ended up getting like a ton of attention from our exec team. They had me tell my story to the whole company, um, and they've raised a ton of money.

I think they raised like half a million dollars in like, An hour after I shared my story, it was crazy, largely with the help of a CEO matching everyone else's donations, but we'll take it. And then, and now we're working on like bringing Salesforce products into the ALS world to try to help speed up. So, what is the path to a cure?

Andrea: That's awesome. So, can you, I'm not super familiar with Salesforce. I know it's like a massive company, but what is, what is the main thing that they do? 

Brooke: Um, so like we started off as a CRM company, which is like a way to basically know your customers better. I feel like I'm doing like a sales call right now and I'm hoping no Salesforce people listen to this because they're going to be like, what is she talking about?

But it started off as that, but now it's really like a bunch of different tools Based on one platform that helps you connect to your customer better is, is the phrasing that they use. Um, so, but like Slack. Okay. Do you know what Slack is? Yeah. Like Salesforce bot Slack. So. It's, it's like a, a suite of tools like that.

So um, we're using right now we're, we're working on using Slack to help the ALS community. 

Andrea: Gotcha. Okay. So like if someone works in a corporate office, they are familiar with the tools of Salesforce then? 

Brooke: Probably. 

Andrea: Okay. Yeah. That's. Although I don't, 

Brooke: I never know cause I lived in San Francisco where Salesforce is like The city, like it's, it's such a part of the city.

And then when I moved back to Maryland, people are like, what, what Salesforce do you work at? I'm like, no, it's called, it's, it's called Salesforce. Yeah. I might just be a jaded a little bit. 

Andrea: So you said that some of the tools that Salesforce has, they're trying to bring it into the ALS community. What, what does that look like?

What kind of tools? 

Brooke: Yeah. Well, so I actually, I spun out a nonprofit about a month and a half ago, maybe two months ago now. Um, but Salesforce had helped me build the foundation of it. So right now, we built a Slack community for people living with ALS, for caregivers of the people living with ALS, um, and eventually we'll expand to like ALS organizations and providers.

The goal is really to get like the entire ALS community into one place. So that it can be like the operating system of anything as it relates to ALS. So like, if you're newly diagnosed one, don't Google anything is my first recommendation, but I wanted it to be a place where like, You could go in and say, Hey, what am I going to need here from other people actually going through this, but then also be able to take action.

So like, if I want to request equipment, I could do it right through there. If I want to find out about trials, I can do it right through there. So we're trying to just bring ALS into the future really. Cause right now, like the space is just so fragmented and siloed and there's like old Facebook groups and Reddit threads that just You know, we could do better.

Andrea: Right. So, so the idea behind it was basically that we've got all of these different people who are trying all these different things and maybe some people are having success but nobody else is going to know because there's no way to like get in touch with each other. Right. 

Brooke: Right. And there's some people in the areas that like don't have specialists.

Like I'm lucky in that typically I'm in D. C. where there's tons of hospitals and specialists but like. Different countries, some of them don't even have ALS clinics or experts. Yeah. So getting globally everyone into one place, just like sort of democratizes care. 

Andrea: Yeah, that's fascinating. So when, now was this something that you spearheaded with Salesforce?

Like you had said, like, Hey, can we create this or was this something they, they brought to you? 

Brooke: A little bit of both. So when I first shared about my diagnosis, Um, they, I, I actually found out there already had, there was a group already called ALS force internally that was one of our, I think it's called like a social group or a, an equality group, something like that.

Um, where their goal was to try to figure out like, you know, fundraisers for this cause and it was all run by people who had been personally affected by ALS, like a family member or a friend. Um, so the group was in place. They just like, we didn't really have a tangible plan. So I think me getting diagnosed and sharing my story with the company kind of put like a spotlight and a little bit of pressure on all of us to be like, well, hurry up.

Like, what are you doing? Right. You keep telling us to help, but like how? Yeah. Um, so yeah, that's kind of been the last year is just like doing a bunch of stuff I never thought I would do. I never really thought I would like run a company, but yeah. Now, I'm trying to figure out all this stuff that ChatGPT is helping me with often.

Andrea: Yeah, I was going to ask, what are some of the It's probably like a 

Brooke: teacher's nightmare, huh? 

Andrea: No, you know what, teacher, it depends on the teacher. I know there are some teachers who are very vehemently against ChatGPT. I am not one of those. I think it can be, it's a tool like anything else. We can use it for, for good.

It can be used for evil too, but also for good. So when, when you're running now, you're running the nonprofit in addition to your full time work at Salesforce, or has it become kind of like a part of your work at Salesforce? 

Brooke: No. So Salesforce gave me, like, they helped me build the Slack workspace. Um, they gave me like a few volunteers to help me build that.

And then they rolled off and we spun out. We, we had to spin out as our own nonprofit cause like, we didn't want Salesforce to be the owner of this workspace. Um, and I don't think legally we could have, right? So we spun it out as our own nonprofit, um, and then hired two admins to help with that. So right now it's two separate jobs.

Um, and then social media. So I just, I'm just failing at all three and trying to do a lot, you know, Well, I just, I, it's a lot. You can tell. Yeah, you can like see, I think in my content, which weeks I'm focused more on that versus others, and then vice versa. Like there, you know, one thing's always going to be.

Catching like less attention, but 

Andrea: yeah, I feel like that's, that's a lot of us is when we're trying to keep so many plates spinning at once. And then we can, I was just telling my husband about this cause I was like, yeah, you know, I can either be like on it with my grading and my work at, at like at my big girl job at work at the university, or I can work out that week.

I cannot do both. Like those two can't coexist in the same schedule, unfortunately. I feel ya. It's a lot. So, now. Um, when you are like approaching all of this, you know, obviously you're, you're doing it from a perspective of now someone who is dealing with all those things, but I also saw that you, um, organized a meetup between yourself and some other people.

Can you tell me about how that came about? 

Brooke: Yes. It's so funny. I've gotten credit for this multiple times. I did not organize it, but I feel like I should just run with that now. So, so for context, when I first got diagnosed, I joined. Um, my local support group, and when I first hopped on, it was a zoom call like this, and then it was me and like 10, Probably like 75 to 85 year old men.

And I'm like, okay, so I was right. You're like, it is all men. All old men. And I was like, why? Like, did lightning just strike on me? Like, why am I here? Right. Um, and so I started searching around again, don't recommend Googling, but I did and found this group called Her ALS Story, which is a group of women who were All diagnosed before the age of 35.

Andrea: Wow. 

Brooke: And so I joined this group, it's like, it was just like a WhatsApp chat, it still largely is, but someone in the group started organizing these annual retreats. Where we all get together and just see each other for a few days, um, but then, so this past one, we, we all went to Cape Cod and I, we did this video of like all of us lined up by diagnosis states.

You can see the different layers of progression and we've been cracking up because on Reddit people are like, I've gotten this screenshot sent to me multiple times where people are like, Hey, How are people like dating with ALS? And they're like, Oh, you should go to a Brooke Evie event. And they paste in that video.

And I'm like. Oh my god, they think I organized like a speed dating event for people with ALS, and it's, first of all, I didn't organize a thing, I just showed up, but I'm getting so much credit for it, and it's, it's cracking me up, like, people who actually do organize it are probably not loving it, but I think it's so funny, like Yeah, EB dating event.

And it's just a bunch of women with adaptive like with mobility aids lined up for the picking. Like, yeah, 

Andrea: I that's it reminds me of that scene from Emperor's New Groove where you know, the Emperor is going down and like picking which lady he wants to be with, but it's just people at different adoptive.

Brooke: That's exactly what it is. And like, I'm like, what did people think that video was for? Like, just Take your pick, like choose your character. 

Andrea: Oh my gosh. Yeah, I, I fully thought, I don't know what in my brain. I, you know what, I didn't think it was a dating thing. I thought it was just like girls trip and it was probably with, with a crew that you guys had gotten together and stuff.

But that's really funny that people have taken like the dating content that you've created and like transposed it in their brain with that video. And they're like, she is getting people who have ALS together. Everybody's matchmaker. 

Brooke: That's right. I'll take, I'm the Patty Stanger of ALA. Oh my gosh, 

Andrea: that's so funny.

Um, okay, that, I think, is a great place for us to take a break. So we will take a break and be right back.

WAF Trailer: Hey everybody! Hey! I'm Lauren. I'm Jordan. And we are starting a podcast together! Yay, finally! I know, it's been like in the works for so long and finally we get to share it with you guys. 

We're really excited about this. It's 

called We Are Fine. Are we? Are we though? Sometimes. Not always. Some days we're doing really good.

Yeah. And some days we're doing real bad. Real bad guys. Yeah. And it's okay. But we're going to talk about it. This entire podcast is dedicated to all of life's ups and downs and all kinds of teacher related mishaps. 

Like being stuck in a school during an apocalypse and trying to figure out how you're going to survive.

Yeah. And then also like the really fun moments like building a special relationship with your students. Or even raising a fictitious egg named Eggbert who becomes a Mushroom King. 

Um, I'm sure he is Toad, not just a Mushroom King. 

Okay, okay. What about the teacher stuff? Because I want to talk about teacher stuff.

Yeah, there will be all of that. We have some amazing teacher guests and we get to dive into their lives as educators. 

So we hope you'll join us on this journey and the We Are Fine podcast. You can get it every Wednesday on my YouTube channel, Mrs. William Fifth, or on all audio platforms and everywhere.

Everywhere that you get podcasts, we will be there. 

I've heard there's a doge moon podcast platform now in space only. 

It'll be there too. So we hope that you'll be there with us and we can't wait to share this journey with you guys. Bye! Bye!

Andrea: Welcome back to those who can't do. Um, so I kind of want to hear about if there are any specific resources or tools that you could recommend either for educators or for people who are looking to just educate themselves and understand a little bit more about ALS, any places? Cause you said don't Google.

And of course that would be my, I, a thousand percent would do the same thing that you did, where I would go to probably the scariest and worst places. 

Yeah, 

and obsess over those because I feel like that's what most of us would do in that scenario. Um, so what are some resources people could go to to learn a little bit more?

Brooke: Yeah, well, I think Googling one is bad specifically for people who think either are diagnosed or like have have any thought that they might get diagnosed which like even if you don't have symptoms some people can just convince themselves of things you know so like just don't google it but also i think google doesn't really explain like it doesn't get you tied to a cause because you're just reading sad facts and you're like all right i'm gonna move on to something that like brings me a little bit of happiness so that's why i i really started sharing my story is because i'm like you know They don't, there's no like face to this disease that people can be tied to.

Andrea: Yeah. 

Brooke: Um, but there are a bunch of places that, that are doing a good job of educating now. My favorite one is called Roon, R O O N. It was founded by two guys whose family members passed of ALS and they decided they wanted to come up with a place where people can go and learn. So it's really just like they recruited everyone in the ALS community.

So patients like me. The top neurologists, every kind of provider, caregivers, and just like ask them questions like this for over an hour, and then they just cropped them into little videos. So it's a whole resource hub of videos.

Andrea: That's awesome. So you said Roon, it's R O O N. com? Yeah. Awesome. Yeah. Now, is there any other resources that you use? You know, I, I know you said that you were a part of a support group that you found that was not just all old men. Yeah. Um, any other resources? 

Brooke: Um, I mean, for people living with the disease, I now direct them to ALS Together, the Slack community, because, you I think it's, it's a really helpful tool to be able to hear it from other people going through it.

But as someone who maybe doesn't have a tie to the community, I would say either follow me on socials or follow someone else living with ALS because like, maybe I don't look like you and maybe you can't relate to me, but there's someone else living with ALS. Living with this disease that maybe you can.

Yeah. Um, and I think that's the best way to learn is hearing from someone who's going through it. Um, yeah, I think that's probably my best. There are other resources out there, but some of them just feel so like stiff. 

Andrea: Yeah. 

Brooke: You know what I mean? Like. I don't want to go to, like, the formal ALS page and, like, see these stock photos of people like that.

No one wants to learn like that. 

Andrea: Right. And I feel like it's, it's far more powerful when you're talking or looking at a real person's story. You know, we, I think as people, we, we cling on to stories in a way. That a list of facts of a diagnosis just doesn't, it doesn't impact. Right. Um, and I think that's what struck me so much about your story is, you know, you were number one, so very honest and raw.

Um, but you did it with such humor and grace in a way that like I admire so much, but also I think it just makes, it makes everything, um, a little bit, I don't know, it, it, I think could help people. Empathize to a greater degree when they're like, wow, what, like, how would I handle that? Like if I, if I was trying to date and I had this diagnosis and I was trying to figure out how to navigate all the same things that I'm trying to navigate, but oh yeah, also I've got this whole thing that's going on.

Like it's, it's incredibly powerful. 

Brooke: It's funny with dating because like most people have. It's just a thing that they're kind of trying to hide until like probably like the fourth date or so. Like you don't want to let out whatever weird secret you might have. But for me, I was showing up with a cane.

I'm like, well, all right, mine's just out on the first date. So how do I get past that? 

Andrea: Yeah. 

Brooke: Um, so it's, it's an interesting perspective to have. Yeah. Um, but I think. With the storytelling piece, it also my age, I think helps too. And the fact that I still have a voice, uh, which not a lot of people with ALS still have after six years of this, two years of diagnosis.

Um, cause at 35, like everyone has a 35 year old in their life. It could be like your daughter. It could be, I guess your mother, which is crazy. 

Andrea: Um, 

Brooke: your sister, your friend, like everyone knows someone. And now they're thinking like, oh man, this could affect that person. 

Andrea: Yeah. I, I, and I think it's also just the, the injustice, like people feel the injustice because we all are like, well, old, old people are supposed to be sick, right?

Like it, like that, that's something that happens with old people. And so I think you're right. The fact that you are 35 and talking about this, I think that that also brings it, like you said, like everybody has like a 35 or someone who's in their thirties or 29, which is, you know, when you first had symptoms.

They can connect with that piece, um, because most of us feel completely like we're 29. Like everything is fine. Invincible. Yeah. We're invincible. 

Brooke: I kept telling everyone I pilated too close to the sun. That's whenever they would ask why I was limping and then it turns out it's like this. Old man blues disease.

I'm like, 

Andrea: damn 

Brooke: it. 

Andrea: I'm probably not supposed to curse on this. No, you're okay. It's not like the cute, hot, just pilate ing. Like, I 

Brooke: know. No, it's like the least chic answer to why do you have a limp? I'm like, oh, I have ALS. Okay, there goes my mood for the day. 

Andrea: How is that when you tell people stuff like that or share about your story and like, what are the reactions like?

Brooke: It stinks telling people. That's like, so when I first started, when I first got diagnosed, I had to tell obviously my family, um, which was horrible, although they had come on the four year diagnosis process with me. So like, at least I didn't have to give, you know, a history lesson, 

Andrea: right? 

Brooke: Then I told my closest friends and that really stunk because I'm like FaceTiming them.

Being like, it's now a good time. And that's like, never, you never want the face time of like, Hey, can we talk for a second? Like something bad is coming. Um, but yeah, most of them either started crying right away and then I would start crying or they would like, go like shocked, just sort of like numb. And I'd be like, call me back when you want.

Like, it's just, I mean, there's no easier way to ruin someone's day. So like, after I had told my closest friends, I'm like, you know what? I'm going to make a social media page and then I could just tell everyone at once. 

Andrea: Yeah. 

Brooke: And then if I, cause I had just moved close, like to where I grew up, so I'm like, I'm going to be running into people all the time.

Um, I'd rather them see it. It's like peacocking. I think it's a term like got to go big. So then you don't have to have these like awkward moments, 

Andrea: right? All of these tiny individual ones. And now you've, you've grown this platform and I think become like you said, like the people didn't really have a face associated and I'll see you next time.

Now what are some, because I know teachers are helpers and they just, they want to do, they're going to want to do something with this information. So what are some things that either, you know, nonprofits or other kind of organizations that potentially could be ones we could point them towards? 

Brooke: There's so many.

I feel like I, I always kind of flail with this question because there's Like, I could write a research paper on this. Yeah. Um, there's a bunch of different organizations that do a lot of good work. So I think it kind of depends on who's asking, like, what your strengths are. Yeah. Um, because some people are really interested in, like, the legislative side of things.

And there's an organization called IMALS that does a lot of that. Other people are more focused on, Patient care. And there's team Gleason and compact, like there's so there's an organization in every kind of bucket. Um, so that's actually like one of the things we're hoping to do with ALS together is like create a space for just advocates, like maybe not someone who's affected personally, but an advocate who wants to come in and help.

How can they come in and take action? 

Andrea: Yeah. 

Brooke: Um, so there's, it's kind of a non answer I guess, but there's just, There's almost like too many ways to help that it, I would want to know like what people are interested in doing and then pointing them. The easiest way frankly is, is donating because it's an underfunded disease.

So like that's been a huge priority of mine is just fundraising for ALS research and ALS patient care. Um, in the hopes that. They figure something out soon. 

Andrea: Yeah. So you said legislatively, what, what would be some legis like what are those laws or those legislations kind of aiming to do? Is it about finding more funding in the budgets for ALS research or is it different than that?

Brooke: That is part of it. Um, but then there's also, and I'm not an expert on this, but there are also like certain acts. So one just got passed. I'm blanking on the name of it. It's like a person's name. Um, that basically helps like veterans living with ALS. Veterans are two times more likely to get diagnosed.

Really? Um, yeah, so there's just like a lot of little pockets of people that need to be protected and need to be given, um, You know, access to medication or access to equipment. So there's a lot of legislation around that, um, that, that I am ALS tackles, but I'm, that's not my strength. Like when people are like, Oh, how do you want to help?

I'm like, I, I can make a joke. So just like put me in front of people who want to learn about it in a funny way. And maybe, maybe I can help there. Um, But yeah, there's, there's like a ton of legal components to this battle that I am not the expert on. 

Andrea: Yeah. I, I, I don't want you to like kind of go over the, the whole make a joke thing because I feel like that is what allows people to engage in something that's so hard, you know, like for me, I, because of the way that my brain works when I'm scrolling through social media, I very much tend to try and find stuff that's going to.

Make me laugh. That's going to distract me from whatever I'm stressed from. All of that. So content that like is, is super like kind of tough to consume. Even if it's important, I have a very hard time with engaging with it. And so. And I think that's the way it is for a lot of people, right? Like, we're scrolling through social media for the happy chemicals and so a lot of times it's either the happy chemicals or it's something that makes us really angry and we want to like type about it and so I think it's so powerful what you're doing by bringing humor into something that is so hard that allows for people to learn in a way that That isn't as scary.

Um, and it's such a selfish thing that we do as humans that we're like, well, like, I want to be happy all the time. So I'm just not. Yeah, I'm just going to scroll to the next thing. That's yeah. But I mean, that's, that is so incredibly powerful. And like, I, we haven't talked very much about some of the content because the Pilates.

Too close to the sun. You did a whole, I, I think it was, um, a carousel on Instagram maybe where you talked about things that absolutely did not cause your ALS, but kind of like, but maybe you did. And it's so funny and so powerful because it's like, yeah, like this is a shitty disease and we don't like, they're kind of like, well, you, you, you got it because you got it and there's not a whole lot else.

Brooke: Right. It can drive you crazy I think if you don't. Um, but yeah, with all this social media stuff, like there is kind of a salesmanship that you have to incorporate because like you said, you're like literally the easiest movement away from just getting rid of someone from and their story. 

Andrea: Yeah. 

Brooke: And, and I noticed I'm doing it.

Like. I'll be scrolling and I'm like, I just want to keep dog video, like forget all these sad videos of, you know, whatever it is and just get me to something light. So that, when I first started, I'm like, how do I? Make it so people are engaged. Um, but I think, you know, I've been posting, I think for two years now, uh, now I think I'm a little more comfortable talking about, like, the progression and, you know, the not so cheery parts of it, um, without worrying that I'm going to scare people off.

But yeah. There definitely is a, a component to it where you're like, if I need, if I want to get exposure on this and a light shined on this, like, I need to do something different than what's been done. 

Andrea: Yeah, absolutely. And I think that's, comedy does that in a way that is really accessible for people. Um, whereas like, if you were just like, here are my symptoms and just listed them, you know.

Or 

Brooke: was like crying every day into the camera. Like, right. It's like, maybe. There must be someone interested in that kind of stuff because you still see people doing it, but I'm like, damn, I could not do that every day. 

Andrea: Right? That's just exhausting, right? And even if you have very good reason to be crying into a camera, you know, like, sometimes there's a really good reason to do that.

But I think, I think what you're doing is, you know, It's just incredibly helpful and powerful because it allows so many people to learn more about it. And hopefully, like, it reminds me of that, um, clip from George Bush where he's like, just send your cash. Right? Like, where it's like that advocacy of like, like people want to send blankets, they want to send stuffed animals, just send cash.

Like, that's so real though, like, I 

Brooke: know, 

Andrea: because 

Brooke: research, like, yeah, how else to encourage people, but like. I mean, there's two, there's like two paths I think I, I send people down. One is like, I'm interested in making patients lives better. That's like the patient care route. And that, you know, could be like, there's, that's, there's still a need for money there, but I think there's avenues there where you can help.

But then the research side, it's crazy how expensive everything is. Like, I think they told me it was like, I'm probably going to get this off by like a factor of 10. They, I think they said it was 250 million to get a drug. All the way through the pipeline. That could be literally, it could be 25 million.

And I, either way, to me, that's like monopoly money. Like I don't understand it once it hits a certain threshold. But, um, so when people are like, you know, how do we get closer? I'm like, I give money because there's not enough for the speed that they're going. Like there clearly needs to be a hundred times the amount of funding.

Cause it's so slow. And until there's a ton of money and resources in this, like. Nothing's going to change. 

Andrea: Right. And with those processes, so if they have trials going on and everything, are, can you sign up for multiple trials or do you have to just like pick one medication to try and that's the only one you have to try at a time?

Is that how it works? 

Brooke: That's a really good question because I didn't know anything about this before getting diagnosed, but you know what's crazy? I was diagnosed four years into symptoms. You can only join trials. under two years of symptoms. So I was like, they were like, no, you can't, you can't do it.

Could you just be like, I, 

Andrea: it turns out I didn't have those symptoms. I was doing Pilates. 

Brooke: Then just lie. She was like, the doctor changed the date on the paper. Like, what are you doing? But they, I guess they can like legally, but, 

Andrea: um, it's a crime apparently. 

Brooke: Apparently she goes to jail. Um, but no, it was, that was crazy.

Although in hindsight, I think it was okay just because. My four years, there were no trials that were 

Andrea: revolutionary. 

Brooke: Um, but I think in the future, the sooner people can get diagnosed, like the better, but with, with these trials, the reason they do two years is because like, they expect you to die between two and five years with ALS.

Like that's the thing. So they don't want someone to start a trial and not live through to the end because they need to collect all the data. It's so morbid talking about us like data points, but like, But we're all willing to do it because, like, we know this is, this could help the next generation of people.

Andrea: Right. 

Brooke: Um, so there are trials out there. I'm not eligible for any. Most people, I think it takes like a year to diagnose, so you gotta like jump on it pretty quickly. 

Andrea: Yeah. 

Brooke: Um, I am able to do something called expanded access or I don't know if it's called that or compassionate care. I think they're interchangeable terms.

But, they basically make certain trial medications available to anyone, um, so I can take it. My data just won't go into the trial data, so I'm not actually helping the trial. So I am on one now of this little purple drink that's, I guess, has gold fragments in it that's supposed to be helping me. I've been on it a year.

I don't, I'm still, I'm not turning gold, but it's, what, did you watch that documentary with the colloidal silver? 

Andrea: No. 

Brooke: The mother god. No, I haven't seen, oh wait, wait, that sounds familiar. I'm taking you all over the place right now, but, so, so yes, I'm on an extended access of a trial, but I'm not able to be in trials.

Separately, this documentary, um, it was a cult and the, the woman was drinking colloidal silver. I think I did see part of that. Yeah. Yeah. I'm drinking gold. It's, 

Andrea: it's not turning you any colors though. 

Brooke: Every morning I'm like, I don't drink my colloidal silver. 

Andrea: Oh my gosh. I mean, that's, that's great that they at least make it available, even if your data points aren't going to be counted towards it.

So that if it is something that will eventually, you know, be helpful, it'll. You know, you're getting access to it, but with that, it's still just the, the one medication you can try at a time that's in trial phases, 

Brooke: right? And then there's, there are two approved medications, um, for anyone, everyone living with ALS.

There are a couple of genetic specific ones. It's interesting. If you Google like ALS medications, it says there are like six or seven. But there's really two. A couple of them are like repeated with each other. There's like two different versions of the same. One is to treat a specific symptom, not treat ALS.

Like, So, it looks like there's more, but there's only two. 

Andrea: Gotcha. 

Brooke: Okay. 

Andrea: Interesting. Yeah. So, um, if a teacher or a colleague or a student's family member has ALS, um, what advice do you think you would give for creating a supportive environment as like, not even necessarily as a caretaker, but just someone in their life if, you know, if somebody comes to them and says like, hey, I have ALS, like, I guess.

What would be best also would be what are some things you should not say to this person? 

Brooke: Man, I've, I've heard some funny things. I bet. I, I don't actually think like you can really say, so I don't think anyone should worry about how they respond. And I think that's partially why I make my content a little bit lighter is because I want, I don't want it to feel like this Taboo topic that if you ask me a question, I'm going to blow up on you.

And then no one's going to be interested. Like, I think it should be more of an open conversation where people can say the wrong things and they can, you know, say like offensive, weird stuff. And it's something we can talk through. Like, I don't, I don't love the idea of us like policing, how people ask questions, um, because it's not a normal situation, like to see, you know, A 33 year old saying, Hey, I'm, you know, I might die in two to five years, um, according to doctors.

Like. Okay. What are people going to say to that? There's nothing normal you can respond with. And I've always been really bad at responding to these types of situations too. Like whenever I'm always like trying to make a joke about it and you know, sometimes people don't want that. So I have terrible advice.

I think just for me, the first couple of months, I didn't want to be asked questions about it. Um, then I just got more comfortable talking about it now. I talk about it all the time and I'm just so desensitized to it, so it just depends what state people are in, I guess. 

Andrea: Yeah. That might, I mean, and that I think is totally fair and makes a lot of sense.

I know that I've had people in my life who've gotten, received a cancer diagnosis, and so there were like certain phrases that people would use, like ad nauseum, that would just drive them up a wall, but. Like what? Do you remember any? People would suggest like a lot of alternative methods like alternative medicine stuff all the time.

That was just really annoying because they're Literally doing like most of their time is spent Seeking treatment from various professionals and then like aunt Becky with some oregano oil is gonna rub it on the back of your neck And that's gonna fix it Stuff like that. I know I 

Brooke: get those a lot. It's like try Or a lot of like, are you sure it's not just Lyme disease?

And I'm like, no, I'm, I'm pretty sure. Um, Lyme disease has a test, doesn't it? It does, but people on the internet don't believe it. Um, which is fine. Like we, we don't actually know what causes ALS, so maybe it could be that, but there's also a bunch of people who've gotten Lyme disease who haven't gotten ALS.

So like, 

Andrea: right, 

Brooke: you know, like we got to also, Be big picture thinkers here. Right. So yeah, there's just, people say weird stuff. Like my friend Jackie and I were in a train station once and I'm in my wheelchair and I'm, I forget I'm in a wheelchair. Like I'm not acting. I'm in one or like, I don't know, I guess that's how people see it.

Right. So some guy, some older guy comes up to us and he's like, I've just got to say, you're clearly Going through something, but you just seemed so happy. You could tell as soon as he started the sentence, you could tell he immediately was like Why did I do this myself? Like he was like trying to find where the sentence would end But he kept adding words and Jackie and I are just sitting there like giggling so hard and I'm like trust me like I Thank you.

Like you're being I Nothing you were saying is mean or offensive like people mean well, they just say weird stuff because they panic right and it cracks me up That's so funny. Oh my 

Andrea: God, that just sounds like something that I would be like trying so hard to say something nice. We've all been there. Yeah.

Oh gosh. I did that with actually with a backtrack. Yes. I did that with a comedian. I went, um, I went and saw a comedy show and the, the guy who was like the, the first act or whatever, the crowd was giving him nothing. Like I felt, I genuinely felt sorry for him because what he was saying was very funny.

His delivery was great, but the crowd wasn't giving him anything. And so. Afterwards, I was friends with one of the other comedians, and I was like, hey man, like, sorry the crowd wasn't really getting it. And he's like, and he looked at me, truly stunned, and was like, What do you mean? And I was like, oh my god, it killed me.

Like, it was so mortifying. He's like, 

Brooke: I just assumed that good meaning. 

Andrea: He's like, I, he's like, what do you mean? Like, I genuinely looked shocked that the audience wasn't good. Cause I was the one then telling him, like, no one thought he was funny, but I thought he was funny. I was trying to be nice to him.

No, 

Brooke: you're like the comedy grim reaper. It was so 

Andrea: horrible. You're like, just 

Brooke: so you know, you should never do this. He's trying so 

Andrea: hard to be encouraging and he's just like, no, like I, like I thought it went great. And I was like, cool, cool, cool, cool. And it did. And. It did and I'm gonna go right now and never speak again.

It was so painful. It is, it was one of those that like I went on with my day and like still to this day I'll be like trying to go to sleep and be like, remember, remember when you went up to that comedian who was really proud of his set and you just screwed it up for yourself? Yeah, it's always when 

Brooke: you're lying in bed when those moments come to the front of your mind and you're like, why now?

Why at this very moment? No, but people like, my first couple videos were just like funny things people would say accidentally, like, I remember the doctors at the very beginning being like, okay, with ALS, like, you should not lose weight, You need to gain weight if anything, like we really just don't want you losing weight, so eat anything and everything.

And my sister went, ugh, you're so lucky. And I remember like, we both looked at each other and just started like cracking up, because we're like, like, it's just not a normal situation, and you're gonna respond like, It's just unfiltered sometimes, so yeah, there's some good moments. 

Andrea: Oh my gosh, that's so funny.

Yeah, that sounds like something that I would say to you and be like, God, you're so lucky you can. Yeah, 

Brooke: it's just like, because it pops up and you're like, our relationship has not been like weirded, like strained by this disease. Yeah. Up until now. So, yeah. Oh 

Andrea: my gosh. So good. All right. Well, before I let you go, um, where can people find you?

How can they, um, give towards the nonprofit or get involved in other ways? You don't wanna say my username? You mean you, you know what I that is like the meanest joke to people. I'll let you say your 

Brooke: username. Okay. So I'll give the context to it because like, hopefully you have millennial listeners because Oh yeah.

Like gen Gen Z just like roasts me about this 'cause they've no idea what I'm talking about. Um, but, so there was this band called Limp Bizkit back in the day. Um, I wouldn't say they had any fans, really, like, I don't think anyone's really a fan of Limp Bizkit, but everyone knew of them, um, so when I first Started limping.

I was trying to think of a username and all my ideas were pretty bad. And then I was like, you know what? I could just throw my name in the middle of limp bizkit. So I just made it limp bruise kit. Um, so it's L I M P B R O O Z K I T. I don't even know, like if that's the right spelling, but I with in terms of like relating it to limp biscuit, but I just, I put it in, no one had it.

Surprise, surprise. And I was like, perfect. Um, but yeah, come to find out. Limp biskit. It's like Very problematic that Fred Durst is not a good guy. 

Andrea: Oh, I didn't know that. And so 

Brooke: I, I, I've learned just because people like send me his stuff all the time. He's also now like a country singer, I don't know, but yeah, I based like an entire disability campaign on like some problematic punk band from the 2000s.

Nice. Love that. Um, so you can find me there. Very long answer to an easy question and then donating. So I do have like, um, a link in my bio that. Send you to a page that has a few different places to donate, depending on what you're interested in. So, patient care, research, or ALS Together, like all these things are linked.

Um, and then I always do like May fundraisers, and I'll probably do a December one for the holidays. 

Andrea: Awesome. Sounds good. Well, thank you, Brooke, so much for coming on. This was super fun.

Welcome back to those who can't do. Um, I personally really enjoyed that conversation with Brooke because I've been following her for Such a long time and have seen her progress from, you know, her dating videos to now talking a little bit more about advocacy for ALS. Um, and I just, I think as educators, we all tend to be very empathetic people.

And for me, I know that, you know, and I don't know if this is like a failing or just part of being human that, um, These kinds of issues and these kinds of diseases and stuff, I naturally feel a lot stronger about them when they are associated with a specific person, um, so I wanted to bring you guys Brooke to hopefully bring a little bit more attention to her story and her journey and all of the different stuff that she is doing to fight ALS and to bring people together within the ALS community, um, because she's just going through something that, um, It is incredibly hard and she's doing it with so much grace.

So I hope you enjoyed hearing our chat. Um, as she said, you can find her, I'm going to look at her name again. I don't want to mess it up at Limp Brewskit on TikTok and Instagram. And she has her website, alstogether. org, um, where she's doing a lot of advocacy work for, um, trying to fight ALS. If you have thoughts about what we talked about today, you can hit us up andrea at human content.

com or you can contact the whole human content podcast family at human content pods. Um, and I absolutely love it when we have beautiful new reviews. On our Apple podcast platforms or really any of the platforms. We don't have any new ones for you today. So if you have a second and you have not yet reviewed the podcast, please do take a second and put in a review for me so that I have something to read at this point.

That would be great. Thank you so much. Um, if you want to see the full video episodes, they're up every week on YouTube at Educator Andrea. Thank you so much for listening. I'm your host, Andrew Forkham. A very special thank you to our guest co host today, Brooke Eby. Our executive producers are Andrea Forkham, Aron Korney, Rob Goldman, and Shahnti Brooke.

Our editor is Andrew Sims. Our engineer is Amy Walsh. Jason Portizo. Our music is by Omer Ben Zvi and our recording looks location, although all I got through all of that. And then I can't say location. Our recording location is the Indiana state by college of education to learn more about our, those who can't do is program disclaimer and ethics policy and submission verification and licensing terms, you can go to podcasterandrea.

com those who can't do is a human content production.

Thank you so much for watching. If you're like me and you're thinking, gosh, I really need more of those who can't do in my life. You can start your binging right now by clicking on that playlist button right over there. New episodes are out every Thursday, so please subscribe and join us each week on YouTube and wherever you get your podcasts.