This 35-year-old woman has ALS – and wants to make you laugh

Brooke Eby has fully transitioned to fall – even if the Maryland weather hasn't yet when we talk in late September. Sweatshirts, hot drinks, you name it.

It's been a season of transitions for the 35-year-old who recently moved back in with her parents to her childhood home. But that change was born out of necessity. Eby has been living with ALS since March 2022, and it "got to the point where I just couldn't do things by myself anymore," she says. ALS is short for amyotrophic lateral sclerosis, a terminal neurodegenerative disease you might know as Lou Gehrig's disease.

When you think of ALS, you think despair, decay, doom. But if you follow Eby on social media like TikTok and Instagram, you're likely fighting off fits of laughter – whether she's laughing at her caregiver Mimi or asking her inebriated friends what ALS stands for.

Eby is changing what the disease looks like and is teaching her followers what it means to live when you know your time of death is coming sooner than you'd hoped.

"I've already experienced something so many people are terrified of, and I'm still chugging along," she says. "So what else can you do?"

'It's just constant adaptation'

Eby attend Lehigh University and graduated in 2010, followed by stints in New York, San Francisco and New York again before moving back to Maryland. She officially got her diagnosis then, but her symptoms started before that. A weird tightness engulfed her calf and wouldn't abate.

She needed to use a cane, then a walker and then a wheelchair over the course of seven months. She revels in her walker days, like when she danced with it at a wedding and everyone laughed – one of the first times where she could talk about ALS without making people distraught.

"Everyone I told before that just started crying as soon as I would tell them. And so at that wedding, I was like, OK, people are laughing, and it's making me more comfortable. Maybe this is the path we take."

The worst part for her has been right before a change in her routine: When you know you need something new, but you haven't gotten it yet and you're mentally trying to accept it. She recalls one of her last days using the walker.

"I was walking across the street so slowly, and I felt so unsteady, and as soon as I got home, I started crying, because I'm like, this just – I can't do it anymore. It's just too hard," she says. "But then once I got the wheelchair, I was like, this is amazing. You accept it once you've tried it, because it helps so much. This disease is a very weird exercise of constant changing. Something that worked two weeks ago might not work today, and so we're just constantly having to re-engineer everything around me."

That's where living with her parents comes in handy. Her dad asks her every day what projects she has for him. The latest? She can no longer reach the hot water nozzle in the shower. He developed a pulley system for her to use.

"It's just constant adaptation," she says. "But if you have family or support around you, it makes it way, way easier."

Other support includes her caretaker Mimi who helps out three times a week; she helps Eby in and out of the shower, cleans her sheets, and more. Many of her friends moved back to the area, too, to raise their families.

"If you had asked us in high school, like, would you be back in the same town, we probably all would have been like, no, we'll be off abroad, like thinking something very chic, and now we're all just townies," she jokes. "But we're happy."

'We thought every doctor was wrong'

It's difficult for her and her family to remember life before ALS. "Even during the diagnosis process, I think we were all in – we're just a denial type of family, like, we're not much of like a sit-down-and-talk-about-feelings family. So I think we all just went straight into denial, especially before the diagnosis, like we thought every doctor was wrong, we thought everyone was dumb, and we just carried on." She's accepted it the most since – it's happening to her body – but knows her others feel helpless.

"You're just watching someone you love decline and there's nothing you can do," she says. "And it's inevitably going to continue. So you're just like, what do you do? For me I can wake up and be like, all right, I feel fine today. Mentally, I feel good, so let's roll. But I think it's got to be way harder watching it."

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'It's just nice to see other people your age in your same position'

The diagnosis has shaped her perspective in surprising, even silly, ways. "I feel like I don't take anything that seriously, even on my work calls," she says. "I've always been kind of like the class clown, but I feel like it's gotten worse since my diagnosis. Because I'm like, 'What are we going to do about it?'"

She pivoted (without choice) from a New York woman working in tech who sometimes goes to a workout class to a social media star and motivational speaker at ALS conferences and events. Companies also ask her to speak to their employees, including her own employer, Salesforce.

Eby has also built connections within the ALS world: "It's obviously a sad community to join, because you make a friend, and there's not a lot of time with that friend, typically." She joined a local support group when first diagnosed full of 70-year-old men, and maybe two other women. The then 33-year-old pondered, "why did lightning strike me?" She's since met a group of women diagnosed before the age of 35: "It's just nice to see other people your age in your same position, like worrying about the same things." They can commiserate, unlike her other friends.

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'I'll guinea pig as much as they want me to'

A cure for ALS remains elusive. But treatments, studies and research are giving patients hope. And for the 2% of patients with the SOD1 gene, one new medication – Qalsody (tofersen) – is offering more hope than ever. It's actually slowing the disease down in some people and, anecdotally, may even make them better.

"I keep hearing all these success stories, and my mom keeps being like, 'can we just sneak you in to that?' I'm like, we could, but I don't have the gene that it would help. I don't think it would work," she says. That said, she participated in a NIH research study – and really, she'll try anything. "I'll guinea pig as much as they want me to."

Dating is off the table for her now that she's less independent.

"I'm at the point where I have enough on my plate that I don't want to deal with like a boy's emotions," she laughs. She "can't imagine a boy complaining to me about his day and me being at all supportive. I'd be like, 'shut up.' I don't think I'd be a good partner."

Most of her friends have been supportive and will travel to visit her. She's learned it's too emotionally taxing for some – something she's put behind her.

"I don't honestly have that many really sad days, like maybe sad moments," she says. "They were mostly when I would fall, and now I'm not putting myself at risk of even being able to fall, knock on wood, but when I would fall, it was like the world was ending for those 20 minutes, because I felt like a baby. Just on the ground, could not get up. Those would always make me really upset. But now these days, I'm just rolling with the punches."

This article originally appeared on USA TODAY: ALS symptoms: This 35-year-old talks diagnosis, living