Brooke Eby was diagnosed with ALS, or Lou Gehrig’s disease, at 33 years old. It took four years for doctors to identify her condition; at the time, her primary symptom was a tightness in her calf that caused a limp in one leg. Nearly three years later, she now uses a wheelchair due to the progression of her denervation.
Since learning of her terminal illness, Eby has taken to social media to tell her story and spread awareness about ALS. She has garnered a following of over 300,000 between Instagram and TikTok, where she posts under the username “Limpbroozkit.” Despite her bleak prognosis, Eby’s videos speak an upbeat truth, even when she talks about the grimmer aspects of her reality. Though she anticipates eventually losing her vocal function and ability to breathe on her own, Eby leads with a lighthearted approach.
Other videos see the social media star — who also works a corporate tech sales job and runs a nonprofit — explaining the reality of her life with ALS. While Eby doesn’t know what her future necessarily holds, she creates videos hoping that they’ll live on as a guide for others diagnosed with the neurodegenerative disease.
In a personal essay for PEOPLE, the 36-year-old looks back on her road to a diagnosis and how she taps humor to manage its impact on her wellbeing, as told to PEOPLE’s Zoey Lyttle.
When I was interviewed on the Today show in 2023, I told Savannah Guthrie, “Levity is my superpower.”
It’s true, although before I was diagnosed, that wasn’t always such a good thing. At work, I was usually the one making jokes and people would tell me to be more serious. But I think it was instilled in me for a reason.
When I was diagnosed with ALS, I took some time to be sad. For the first two months after I was diagnosed, there was nothing light-hearted about my reaction. I was in shock. After that decisive doctor appointment, I crawled in bed and miserably wondered what to do next. What could possibly distract me from this?
I tried to watch TV. Those were the early days of Bridgerton; I wasn’t into it. Before my diagnosis, I was in the middle of watching The Sopranos for the first time. It was no longer appealing: Everyone was dying there too. So instead I read. I stayed in bed, I ate M&Ms and I read more than 50 books that year in the hopes of getting my mind off of my ALS.
I got diagnosed in March 2022. That May, one of my best friends from college got married. I had just spent two months eating M&Ms in bed, so my bridesmaid dress didn’t fit the way it was supposed to. Plus, I was wearing Hoka sneakers underneath it. It was not looking good for me.
People get all dolled up for a wedding, especially when you want to show off to your old college friends. Everyone had been working out and fake-tanned for this occasion, and I walked in with the exact same walker as the bride’s grandma, same tennis balls on the bottom. I was like, “F this.”
I turned to my best friend — another guest — and I told her, “We gotta go. I’m leaving. This is so embarrassing.” She convinced me to stay. It could be really embarrassing, she said, or we could just make it really fun. I agreed to try.
I might have been matching the bride’s grandma, but my walker was a total hit. Everyone was using it as a prop on the dance floor. People were limboing under it. The bride sat on it and I gave her a ride. The photographers at that wedding loved it.
The wedding taught me early on that everyone was a lot more comfortable with my situation when I was laughing, and that came back around to make me feel more comfortable too. It was a welcome realization after a really grim period of uncomfortable interactions with my friends and family.
For those first two months, I had to make a lot of phone calls that basically started with, “Hey, are you sitting down?” That was the worst. I hated telling people like that because then we would just have to sit in the sadness together. I figured it would be a lot easier on me if I could just make people laugh about it like they did at the wedding. I knew practically nothing about social media, but I decided to give it a try and see if it could be an outlet for some much-needed levity.
I Googled “How to make a TikTok,” and a guy in a YouTube video taught me how to get started. But looking back I actually had a few pretty successful videos for someone with zero idea what she was doing. I think my first viral post was me texting my friends from high school to tell them about my diagnosis. They know me well enough to know how I wanted them to take the news: with the funniest responses possible. People on TikTok loved those screenshots from our group chat.
It’s been over two years since I started posting on social media, and it’s wild how much you can see my progression if you go back far enough. (Not that I can stand to watch those videos, in the same way you can’t listen to your own voice on a voicemail. It’s that but worse. Like what was I trying to do in some of these? Why was I so peppy? Maybe I’m still that peppy? Just be normal!)
I have a TikTok playlist called “ALS Clinic,” which is where I’ve documented my quarterly doctor appointments. In the early days, I would hop up and sit cross-legged in the patient’s chair while they tested me. You can see I was clearly comfy. Now I’m just in my wheelchair barely passing any of their tests. It’s nuts to notice.
Generally speaking, it’s quite hard to know how fast I’ve progressed. There’s really no guide with ALS. If you were to look at 10 people with this disease in a line, I swear you wouldn’t be able to tell whose progression is the fastest and whose is the slowest. There are people who have full function in terms of walking, but ALS already took their voice, whereas for me, it’s the opposite.
In 2018, I was 29 years old, working in tech sales, living in San Francisco with some tightness in my calf. That’s all it felt like — just tightness. I was walking slower because of it, but I thought I just wasn’t stretching properly after I worked out.
Early the following year, I moved back to the East Coast, to New York City. The tightness remained and my foot started feeling funny. I developed a limp that became more and more pronounced throughout 2019. I remember one time putting on some little heeled booties and my foot kept flopping to the side. I was losing my balance.
In May, I took my sister Sarah on my work trip to Hawaii. She’s a doctor, and she told me to walk on my heels so she could observe what was happening. She saw how my left foot kept slapping down onto the ground. It’s called foot drop, and Sarah guessed I had pinched a nerve in my back, a pretty likely reason why an otherwise healthy 29-year-old would be limping.
Sarah said doctors would be able to spot the pinched nerve right away after an MRI. When they couldn’t, she and her husband continued throwing things out there. They’re both doctors, and I think they were probably in denial because they knew plenty of alternative possibilities to call out before conceding to the worst-case scenario. I don’t think it was an immediate concern on their part.
Over the course of four years, I underwent almost every type of medical test: x-rays, CAT scans, blood tests. There’s not one definitive way to diagnose ALS. They basically have to rule out everything else first and make sure you hit some clinical markers.
The doctors looked down every alley for an explanation. At one point they wondered if I had polio. I didn’t know polio even existed anymore. They brought up something called Monomelic Amyotrophy, which no one’s ever heard of, but I still remember the name.
Nothing they said was ever certain. They were just throwing things out there: “Just keep an eye on it.” I’m glad I didn’t know anything about the medical world back then because I probably would have been a lot more panicked if I did.
ALS was first brought up to me in 2020. I went to an appointment with a top neurologist at Johns Hopkins, and he ran a couple of tests that I had already done 100 times. He asked if I had ever heard of ALS, Lou Gehrig’s disease. I told him yes, I had heard of it, but no, that’s not what I had.
He said it could be something like that. He couldn’t be sure, but he told me what my progression would look like if it was ALS. He gave me a genetic test. I cried a ton on the drive home, but I wouldn’t know just how freaked out to be until the genetic results came back in four weeks.
We panicked as we waited, but the test came back all clear. We celebrated like crazy. We thought we were safe. We thought no genetic markers meant no ALS, but now I know that 90% of cases are not genetic. All the doctor was doing was seeing if there was a genetic component so that they could start me on a genetic treatment. Maybe he explained that during our first appointment and I was just shut down, not listening. I don’t know. I was so uneducated about it.
I tried to go back to normal life after that appointment and mostly ignored my limp over the following two years, but at the beginning of 2022, I started losing my balance and decided to go back to a different neurologist. I went to the doctor’s office alone in March 2022. I had been so many times over the course of the past four years, and I thought this appointment would be no different. They’d tell me they don’t know what’s wrong yet, then I’d leave.
There are a couple of tests to do once everything else is ruled out. I’ll preface this with a warning for those with a fear of needles: they run an EMG test, which involves putting a needle in your muscle and having you flex or move it. It measures muscle response or electrical activity in response to a nerve’s stimulation of the muscle.
At this appointment, they ran that again; it was probably my eighth or ninth time getting an EMG test since 2018. For four years it only ever showed denervation in my left leg, nowhere else. In March 2022, they saw it in my right leg too — an official sign of progression. They checked my arm and saw it was twitching a little bit. That was enough for them to diagnose me at age 33.
My doctor was pretty gentle with it at first because I was so young and it had taken so long to get to a conclusion. They still weren’t sure. They never felt sure. My doctor told me my progression had been very slow so far. “We’re just going to anticipate that it’ll continue to be slow,” she said. “You could live a long time, and it could just be slow progression.”
I think that was a good way to frame it. I feel like unless it’s in the next six months, no one needs to hear a date when they’re expected to die.
ALS is pretty much entirely untreatable, save for a few measures to slow down progression if you’re among the 10% with the genetic kind. In those cases, doctors can sometimes target a gene. Otherwise, for the rest of us with what’s called “sporadic” ALS, there’s no one place to aim treatment. They don’t even know why people progress at different speeds.
There are two approved medications for sporadic ALS, but they’re only intended to slow you down by months or a percentage of time. It’s never anything that makes you feel excited.
In my experience, the terminal aspect of the diagnosis isn’t the scariest part. For me, it’s what comes before that. ALS isn’t an illness that takes you in your sleep. That’s why I think it’s one of those diseases that people see as the worst diagnosis you can get. You’re going to die, but you’re going to suffer until then. It makes you lose everything first. You’ll lose all of your ability to function. What am I going to become before that end happens?
The scariest parts happen right before each step in progression, like just before I needed to use a cane or move into a wheelchair. The pre-wheelchair period is really scary, because you feel like everything is about to truly change.
I’m now at the point where my arms are starting to get weak. It’s not as scary now as it is just incredibly frustrating, because I’m so used to doing everything by myself. I moved into my parents’ house this past August. I got to the point where I couldn’t stand, and with the weakness in my arms, I was getting stuck trying to get into bed. Or I’d get stuck transferring onto the toilet and have to call a neighbor, which is always really fun to do.
Moving in with my parents is kind of a relief. My day hasn’t changed much, at least not in terms of my time blocks. I still work in tech sales. I never actually stopped — not during the four years when I was searching for a diagnosis and not once I got one. Having some sort of schedule has kept me sane a little bit. It makes me feel like I’m still part of society.
The in-betweens of my time blocks do look a lot different though. When I need to go to the bathroom, I call my parents and have them set up the lift for me. Those types of things are newer, but the scarier-sounding steps are still ahead. I’m scared to lose my voice. Breathing is a voluntary muscle function, so that will be affected eventually too. At some point, I won’t be able to breathe on my own.
You know those people who talk about sleep paralysis? They say they wake up in the middle of the night and they can’t move, can’t talk, can’t do anything. I think that’s what it will feel like while I’m not asleep. It’s a scary thought.
Having to grapple with that is one of several reasons ALS support groups have been so crucial for me. It’s been especially important to find other people who are my age with this diagnosis because I’m at a time when many of my other friends are getting married and having kids. Sometimes I look at them and I’m like, Man, I really got struck by lightning in this group. Everyone else seems to be having a normal trajectory and I’m having the opposite of one.
In many ways, the people I’ve met in support groups have also made it possible for me to do what I do online and talk about ALS. At the beginning of my journey (I always feel like I sound like a Bachelor contestant when I call it my “journey”), like before that fateful wedding, I had basically resolved to never speak to people again. I didn’t want to have to keep going through the experience of sharing all the details and having people pity me. It was too uncomfortable.
Then I remember one girl in my support group told me that if I didn’t want to share my story, I could just share hers instead. My whole perspective kind of flipped after hearing that. She had no ego about it at all. She didn’t care about anyone’s reaction. I realized that she was just sharing her story because she thinks it’s important and because it might help someone to hear it.
I got to thinking about it, and I decided I needed to get over the fact that I’m not going to have a typical 30-something life. That’s not my path.
My TikTok really blew up somewhere between my videos taste-testing a really disgusting medication and my series about dating. I posted a bunch of videos about my romantic life, but I got to a point where I realized I couldn’t be a partner to anyone while I was personally just trying to survive.
It’s interesting to see which videos resonate with people who don’t have ALS too. I’ve made a few posts about how this diagnosis has affected my relationship with food, which prompts some reflection on how I used to think about eating — or rather, how I used to think about not eating.
It’s wild. Honestly, I’ve come to believe that all women think about lack of food all the time, because every time I post about that, every woman in my comments is like, “This is me too.” Even when I was 20 — the age when I see myself in photos and think about how I was literally the hottest I’ll ever be — I remember constantly worrying about how to control my weight. At the time, eating pizza after a night out meant I’d have to go to SoulCycle every single day that week.
Then I got my diagnosis, and when they tell you that you have ALS, they also tell you to gain weight. There are a number of reasons for this, but here’s the most frustrating part: For all the times that I laid in bed in my 20s and dreamt of everything I wished I could eat but wouldn’t let myself, I now have zero appetite for any of it. My medical advice is quite literally, “thick thighs save lives,” and I don’t want to eat the things I once rendered off limits.
Once the need to gain weight started nagging, that other, restrictive noise was suddenly silenced. My brain was like, “Oh, okay. I don’t have to worry about that anymore. So what do I think about now?” It turns out I can think of anything I want.
It’s the craziest thing, and it’s even crazier that it took an ALS diagnosis to do that. Our culture has gotten to the point where women aren’t willing to gain weight unless they’re dying.
There are plenty of other issues of appearance that you have to let go of when you’re at the point where you need to be lifted onto a toilet. You can’t try to look chic while that’s happening. Same with having a caregiver. You can’t really maintain any modesty with them. You have to just focus on getting your tasks done for the day.
As I mentioned before, my daily tasks aren’t entirely different. I still have my work in tech sales. I have gotten a little busier with the additions of my social media and the nonprofit I started. If you’re still wondering why I work a regular job, I’ll tell you that corporate support has played a key role in that latter endeavor.
ALStogether launched in October, though we started working on it long before. It addresses a problem that immediately comes up after you get diagnosed. You’re told you have ALS and there are resources — a lot of resources. But these resources are everywhere, and everything is scattered around. You have to really search on your own to find grants or equipment loans, all those types of things.
It takes time and a lot of effort, neither of which people living with ALS really have. You get diagnosed and they’re like, “You have an average of two to five years to live,” which means you might have less than that. So you go home and rush to figure it out, but you’re losing mobility too. It’s like waves just keep crashing on you.
My nonprofit uses Slack as a hub for people diagnosed with ALS, giving them one place to connect with experts, caregivers, providers, organizations and other people living with this. The operating system allows users to talk to each other, ask questions and share resources, but in the next phase of things, we’re going to incorporate resources too. People will be able to request equipment or request a grant all in one place.
If you get diagnosed, all you’ll have to do is open up ALStogether. Just open up the Slack and then feel like you can exhale, because everything’s right there for when you need it.
I’ve had a lot of support with ALStogether from members of the Salesforce executive team where I work. I didn’t really have to explain my situation to them. I’d already handled that. I was so scared to tell work after I was diagnosed because it’s so personal. Everyone has that one coworker who overshares. I didn’t want to be her, but eventually, I decided to write out what was going on with me and post it on LinkedIn. It might have been a bit of an over-correction actually, but I’m a fan of getting it over with in one fell swoop.
I posted on LinkedIn, closed my laptop and ran away from it. I worried that they were going to start pushing me out. But then the next day I saw thousands of supportive messages, including ones from very high-level Salesforce execs. I got introduced to colleagues who are involved in ALS advocacy or want to be, and that’s kind of how this whole nonprofit came to be. Because I shared my story, I got to meet this group of people who wanted to help and had the necessary resources.
Salesforce bought Slack a long time ago, so it’s one of our products. I pitched ALStogether as a use case that could really help this community, and maybe it could be a really cool template in the future for other diseases too. I needed some help making it though, and these two executives gave that to me. For three months, I had a team of people to really build out the foundation and figure out what the Slack workspace would look like, what I wanted and what my vision was.
After those few months, I hired two part-time admins who helped make sure the platform was a safe place, and I still have a lot of support from those Salesforce execs.
When people ask why I’m still working, that’s my best answer. For one thing, I have a paycheck and insurance. That helps. But work is also helping me accomplish what I want to do. It’s very mutually beneficial.
Sometimes I feel like I’m flailing at all three of my jobs. I do have a talent manager to help with social media, although I’m not really making videos the way a full-time content creator would. I’m not producing then executing an idea, because this disease is kind of doing the content creation for me. I’m just sharing certain parts of my day, and every day is a new challenge, so I just talk about how I’ve overcome it, hit post and hope.
I don’t really care so much about how I’m remembered as an individual. As long as everyone remembers me as prettier than I am, it’s fine. But in all seriousness, it truly isn’t about me specifically. I just hope the memory of someone with ALS who looks like me will stick with people.
I have ALS at a relatable age. Personally, I always associated this disease with older men. That makes it easier to look away and be like, “That’s not my problem.” But I could be someone’s daughter, sister, mom, girlfriend, wife. I think people see me and it’s a little more real. It’s more like a shock to the system, and then they start caring more.
My TikTok presence will live on after I die, so I hope it serves as a visual diary for anyone who gets diagnosed and needs a guide. I wish I could have more of that now. There are things in my future progression that I don’t totally understand. I don’t know what to expect from full progression, when I’m fully paralyzed and unable to talk. Sometimes that late-stage period can last a long time.
But knowing that’s ahead, I really do wonder about it. Like, how do you go to the bathroom at that point? What does that look like? What’s it like to lose your voice? How am I going to be able to make jokes at the dinner table? Am I going to have to type it out but then the moment of the joke has already passed?
I want to see a morning to night of that progression, but no one’s really done it. There are a couple of movies that document it, but I’m always hesitant to watch a movie about ALS. It’s just a lot.
I think it’d be great if someone were to make little TikToks about how they do their day. Hopefully, that’s what mine can do for someone in the future, despite how much it makes me cringe thinking that people could watch my videos 10 years from now.
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