Brooke Eby Is Dying For You To Know The Signs Of ALS. Literally.

Brooke Eby never intended to become an influencer. In fact, she had to watch a YouTube video on how to create a TikTok before making her first post. But she never intended to be diagnosed with a terminal illness at 33, either.

Eby, now 36 ("Plus one month and one day," she says, ever-cognizant of the time fuse attached to her nervous system), was diagnosed with ALS, also known as Lou Gehrig's, in March 2022. Commonly and falsely associated with an older population, the progressive disease that impacts muscle movement — and shot to fame in 2014 in part by the viral Ice Bucket Challenge — comes with a life expectancy of two to five years.

"I would debate the word influencer," Eby tells Scary Mommy of her social presence on platforms Instagram and TikTok, where she has amassed nearly 400,000 followers under the handle @LimpBroozkit. "I'm just sharing my story, and if that influences people to care, sure, I'll take that title."

In 2019, Eby, then working in tech sales for SalesForce in San Francisco, noticed a persistent tightness in her left calf muscle. She remembers not being able to keep up with friends while crossing the street and developing a pronounced limp. Eby says her sister, a doctor, told her she noticed "foot drop," a condition that makes it difficult to lift the front of your foot, and suggested it may be a pinched nerve. Despite running "every test you can think of" among specialty doctors up and down the East Coast, it took doctors four years to give Eby a definitive diagnosis.

"I laid in bed for two months eating M&Ms," she says, adding the official diagnosis had a numbing effect. "I feel like I was like Teflon. No one could say anything to me that would sink in, because I wasn't even in fight or flight — I was in freeze. No one could even ask me a question without me getting upset."

A turning point for Eby came at a friend's wedding two months later where she arrived using the same walker as the bride's grandma. "I wanted to leave immediately," Eby says, but she knew the truth. "I could either lean in and have fun or spend whatever time I have left being sad."

And lean in, she has. After the wedding, with a little coaxing from friends, Eby began sharing her life with a terminal diagnosis on TikTok in the summer of 2022 — but not in the doom and gloom way you might expect from a girl whose life had suddenly become an hourglass. Instead, Eby decided to use humor not just as a coping tool but also to spread awareness.

"Telling first dates that I'll be using a cane," Eby titled one of her first viral videos that has since racked up nearly two million views and features screenshots of text responses she got from future suitors.

"Order another cane cause, girl, you got me trippin," wrote one. Another responded, "You'll fall for me before we even get dinner." The video was so popular Eby made a second one that received even more views.

But Eby was just getting started. TikTok became her daily diary where, she says, she was just trying to share her life — and nothing was off limits. In between sharing her day-to-day life, including first dates and makeup products, she was also answering questions like "I thought ALS was for old people?" and "What will you do if ALS comes for your voice?" Eby also shared videos where she sampled trial drugs, tested out new mobility devices, and detailed what it takes to find a reliable caregiver.

"Part of deciding to share was just making a resource I wish I had had when I was diagnosed," Eby says.

As months passed, Eby's following grew... and her disease progressed.

"I don't even know that girl," Eby says, reflecting on how much has changed since she began documenting her life with ALS online. "Physically, I just was doing so much more."

Eby's community has watched as a cane turned to a wheelchair, and living alone evolved into moving back in with her parents. Recently, she shared that she is slowly losing the use of her hands, but two things have remained the same: her sense of humor and determination to change the way people think about ALS.

Since her diagnosis, Eby has become a spokesperson for multiple ALS organizations, including the ALS Association and the MDA, was the keynote speaker at Salesforce's annual conference, served as a patient advocate for the medical platform Roon, testified before the FDA in support of a new drug that could slow the progression of ALS symptoms ("It was denied, though," she says), and developed ALStogether, a centralized hub of resources for the ALS community that didn't previously exist. Oh, and she's raised more than $1,000,000 for ALS research through online fundraising and community walks. No big deal.

Though perhaps the biggest impact, Eby says, has been being able to change the conversation surrounding this disease, particularly for those who think it can only impact "old white men."

"I was one of those people," Eby admits. "People have said to me, 'You've become the face of ALS!' But there is no face of ALS, because it can hit anyone at any time."

2025 marks three years since Eby was diagnosed.

"My plan is to post until the end, as long as I'm capable of it," Eby says of her burgeoning social presence. Though realistic about her fate, Eby remains hopeful that in 10 years, she and I can reminisce on this interview with her signature trait: laughter.

"I plan on looking at you and saying, 'Wow, can you believe ALS wasn't curable back then?'"