Last year at the age of 33, Brooke Eby was diagnosed with ALS, a progressive degenerative brain disease that is usually fatal within less than five years of diagnosis. To raise awareness of the condition and give a voice to others with it, she began sharing her journey on TikTok (@limpbroozkit). We talked to her about her experience.
How did you learn you had ALS? Did you notice signs that something was happening before an official diagnosis came?
In 2018, I was walking to a work conference and a few coworkers pointed out that I was limping. I had just gotten off a long course of steroids after an ulcerative colitis flare, so I wasn’t ready for another medical problem. I had my sister, a physiatrist, check my leg and she said I had “drop foot.” That kicked off a four-year diagnosis process — I went to every kind of doctor and got every kind of test, but my one-sided limp was a mystery.
Then in the beginning of 2022, I started noticing that walking was getting harder, so I went back to the neurologist. They ran an EMG and determined the denervation that had started in my left foot had officially progressed into my right foot. That allowed them to officially diagnose me with ALS.
ALS disconnects your brain from your muscles, so while now it is just affecting my legs, eventually it will affect my ability to move, talk, swallow, and even breathe.
How did you react to the diagnosis?
I was in shock for the first couple of months. I crawled into bed with a bag of M&M’s and just tried to distract myself for months. I told a few close friends and family, but it was a difficult conversation every time.
What inspired you to start chronicling your journey on social media?
Two months into my diagnosis, I was a bridesmaid at a close friend’s wedding. I was showing up with a walker in a dress that was too tight (thanks to the M&M’s) in front of all my college friends. I remember walking in, turning to my best friend, and saying, “This is too embarrassing, we need to leave.” And her response was, “It could be really embarrassing, or we could make it really fun.”
Two hours later, the bride was limbo-ing under my walker and I was giving walker rides all over the dance floor. That was the moment I realized I could still be myself and make people laugh even with this diagnosis. Shortly after, I downloaded TikTok and started sharing.
What has it been like amassing a community of more than 100k followers on TikTok? And how would you describe the feedback/interaction you have from and with that community?
It has been incredible! ALS is such a quick death sentence — two to five years after diagnosis — so we don’t have a large group of survivors to advocate for us. I don’t think anyone knows much about ALS until they’re affected by it personally.
Because I still have my voice, I decided to share my story to increase awareness and get people invested in finding a cure for ALS. I did a video every day in May for ALS awareness month and it was amazing to see people interested in learning more and asking questions.
Are there any tools, resources, or advice you’d like to share with others who have ALS or another chronic disease?
My two pieces of advice are to find a support group and download the Roon app, or go to roon.com, where a ton of patients, top doctors, caregivers, and ALS providers answer any question you may have.