The 37-year-old content creator says her speech has deteriorated rapidly in recent weeks, months after she first revealed she was experiencing bulbar symptoms

NEED TO KNOW

• ALS activist Brooke Eby revealed that her ability to speak has rapidly deteriorated in recent weeks
• “This sucks,” the 37-year-old content creator admitted. “Like, I’m not ready to give up talking”
• Eby, who first disclosed speech-related bulbar symptoms in January, still found room for humor in the emotional update

ALS activist Brooke Eby is opening up about a devastating new development in her disease progression: she’s losing her voice.

The content creator, 37, shared a candid update on social media over the weekend, revealing that her ability to speak has rapidly deteriorated in recent weeks.

“So I feel like I lost my voice, like, overnight,” Eby said in a video posted on Friday, Sept. 4, which she simply titled “Voice update.”

While the change initially felt sudden, Eby acknowledged that there had been signs for some time. “Well, it’s been a couple of months since people started asking me to repeat myself,” she explained. “But in the last few weeks, people just can’t understand me at all.”

Eby, who was diagnosed with amyotrophic lateral sclerosis (ALS) in 2022 at age 33, then turned to her mom and asked her to recall some of the funny ways she has recently misunderstood what her daughter was trying to say.

But amid the pair’s playful exchange, Eby candidly acknowledged how difficult the latest loss has been to accept.

“This sucks,” she said. “Like, I’m not ready to give up talking.”

Eby explained that speaking now requires careful positioning of her body. “My head and neck have to be in the exact right position for me to even get any words to come out,” she said.

She added that she isn’t sure exactly what is making speech so difficult, wondering whether her breathing has become too weak to compete with the breathing machine she relies on or whether weakening muscles around her mouth are contributing.

“I can’t tell if it’s, like, my breath isn’t strong enough to fight the breathing machine anymore or if it’s just my lips are weak,” she said.

Still, Eby’s signature sense of humor remained intact. After struggling to deliver a joke riffing on the phrase “loose lips sink ships,” she turned her attention to her appearance instead.

“My head looks like a thumb,” she quipped.

Never miss a story — sign up for PEOPLE’s free daily newsletter to stay up-to-date on the best of what PEOPLE has to offer, from celebrity news to compelling human interest stories.

Her followers met the vulnerable update with the same combination of affection and humor Eby has long brought to her own ALS advocacy.

“Sounds like a them problem to me. Keep ‘em guessing queen,” one commenter joked, while another wrote, “have they tried reading the captions? hope that helps!”

“We understand you just fine sister,” another assured her.

One follower reflected on what Eby’s disease cannot diminish, writing, “at least the one thing ALS will never be able to take from you is your charm, wit, and ferocity. as well as your never ending love and compassion for others ❤️”

The change in Eby’s speech comes months after she revealed that she had begun experiencing bulbar symptoms, which can affect a person’s ability to speak and swallow.

In a January update, Eby listed “trouble swallowing, speech disturbances [and] extra saliva” among her newer symptoms. At the time, she said she wasn’t “fully slurring,” though getting words out had begun to take longer.

“By the way, whoever created the word ‘bulbar’ to describe speech disturbances when it’s such a hard word to say, why are you so mean?” she joked at the time.

Eby has been unusually candid about the progression of her ALS since her diagnosis, documenting both the physical losses caused by the neurodegenerative disease and the emotional toll of becoming increasingly dependent on others.

In May, she told her followers that she felt like a “talking corpse” and admitted that maintaining her sense of humor shouldn’t be mistaken for being happy about what was happening to her. “I can’t emphasize enough, being funny and being happy are two very different things,” she said. “I actually really dislike what this disease has done to me emotionally.”

Later that month, Eby revealed that she had also become increasingly frightened as her breathing declined. She said she could spend only about two minutes without the BiPAP breathing device she now relies on.

Even as her condition has progressed, Eby has continued using social media to educate her hundreds of thousands of followers about the realities of living with ALS — often pairing stark honesty about the disease with the dry humor that has become a hallmark of her advocacy.

In a January 2025 personal essay for PEOPLE, Eby contemplated this very stage of her disease progression, admitting, “I’m scared to lose my voice,” and later wondering, “How am I going to be able to make jokes at the dinner table?”

#ALS #Activist #Brooke #Eby #Reveals #Shes #Losing #Voice #Disease #Progresses #Ready #Give #Talking