Brooke Eby is fully embracing the autumn season, even though Maryland’s weather hasn’t quite caught up with her enthusiasm during our late September chat. She’s wrapped up in sweatshirts and sipping warm beverages.

For the 35-year-old, this has been a time of significant change as she has recently returned to her childhood home to live with her parents. This move became necessary after she was diagnosed with ALS in March 2022. “It reached a point where I couldn’t manage things on my own anymore,” she shares. ALS, or amyotrophic lateral sclerosis, is a terminal neurodegenerative illness that is often referred to as Lou Gehrig’s disease.

When people think of ALS, they often associate it with gloom and suffering. However, those who follow Eby on platforms like TikTok and Instagram find themselves laughing as she shares humorous moments with her caregiver Mimi or playfully quizzes her tipsy friends about the meaning of ALS.

Eby is redefining the narrative surrounding this illness and showing her audience what it means to live fully even when faced with a terminal prognosis.

“I’ve faced something that terrifies many people, yet I’m still moving forward,” she explains. “So what else is there to do?”

‘It’s a Continuous Process of Adaptation’

Eby graduated from Lehigh University in 2010 and has since lived in New York, San Francisco, and then back again to New York before returning to Maryland, where she received her diagnosis. Her symptoms began earlier with an unusual tightness in her calf that persisted.

Over seven months, she graduated from using a cane to a walker and then to a wheelchair. She fondly recalls her time with the walker, especially when she danced with it at a wedding, generating laughter instead of sadness—a significant first step toward discussing ALS in a lighter way.

“Earlier on, whenever I told anyone about my diagnosis, they would instantly start crying. But at that wedding, seeing people laugh made me feel more at ease. Maybe this is how I should approach it,” Eby reflects.

For Eby, the most challenging part has been adjusting to new equipment: knowing you need to switch to something different while still processing the mental adjustment. She remembers one of her last days using the walker with regret.

“As I walked across the street slowly, I felt so unstable. Once I got home, the tears flowed, and I realized this is just too difficult for me anymore,” she recalls. “But the moment I got the wheelchair, everything changed. I thought, wow, this is fantastic. You adjust once you’ve given it a try because it brings so much relief. Dealing with this illness requires constant adaptations, as what worked just a couple of weeks ago might not hold up today, so we have to continually rethink everything around my situation.”

Living with her parents has proven to be beneficial in this constant adjustment. Her dad checks in daily to see what projects she needs help with, the latest being a pulley system he built to help her access the hot water nozzle in the shower.

“It’s a constant process of adaptation,” she says. “But with the support of family, it becomes significantly easier.”

Her caregiver Mimi, who assists her three times a week, plays a crucial role, helping Eby with daily tasks like showering and laundry. Several of her friends have also returned to the area to start their families.

“If you had asked my friends in high school if we would all be back in our hometown together, we’d probably have laughed and imagined we’d be off exploring the world. But here we are, all settling down locally,” she jokes. “And honestly, we couldn’t be happier.”

‘We Thought Every Doctor’s Opinion Was Wrong’

It can be challenging for Eby and her family to remember their lives before the diagnosis. “During the process of getting diagnosed, we were definitely in denial. We’re not the kind of family that discusses feelings openly, so denial is our go-to. Before the diagnosis, we honestly thought every doctor must be mistaken, that everyone was incompetent, and we just kept going forward.” While she has come to terms with her reality, she acknowledges that her family continues to feel a sense of helplessness.

“It’s hard to watch someone you care about deteriorate, and you can do nothing to stop it,” she shares. “It’s an ongoing process. I can wake up and feel perfectly fine, ready to take on the day, but I imagine it’s far more challenging for those observing.”

‘It’s reassuring to connect with people my age facing similar challenges’

The diagnosis has transformed her outlook in unexpected, even lighthearted, ways. “I no longer take things too seriously, even during work calls,” she mentions. “I’ve always had a playful side, and it feels even stronger since my diagnosis. I often think, ‘What can we really do about this?’”

She transitioned from being a tech professional in New York who occasionally attended workout classes to becoming a social media figure and motivational speaker at ALS events and conferences. Her employer, Salesforce, has also invited her to share her story with their employees.

Eby has formed valuable connections in the ALS community: “Joining this group is undeniably sad; whenever you make a friend, you often have very little time left to spend together.” Initially, her local support group consisted mainly of elderly men with only a couple of other women. As a 33-year-old, she questioned, “Why is this happening to me?” However, she has since connected with younger women diagnosed before turning 35: “It’s comforting to see others my age experiencing similar fears and concerns.” They offer mutual support that she doesn’t get from her other friends.

‘I’m open to trying anything’

Although a cure for ALS remains elusive, ongoing treatments, studies, and research are creating opportunities for hope. A new drug, Qalsody (tofersen), is providing hope for 2% of patients with the SOD1 gene, as it’s been shown to slow the progression of the disease for some—some anecdotes even suggest improvements.

“I hear so many success stories, and my mom keeps asking if we can find a way for me to get involved,” she states. “But unfortunately, I don’t have the specific gene that the treatment targets, so I’m doubtful it would help.” Nevertheless, she has taken part in a National Institutes of Health research study—she’s ready to explore every option. “I’m willing to be a test subject as much as they need me to be.”

As her independence has diminished, dating is off the table for her now.

“I have so much on my plate that managing someone else’s feelings is beyond me right now,” she chuckles. She adds, “I can’t picture myself being the supportive partner if someone complained about their day. I’d probably say, ‘Can you please keep it down?’ I wouldn’t be a great companion.”

Most of her friends have rallied to support her by visiting. She understands that for some, the emotional toll can be overwhelming—a realization she has come to terms with.

“Honestly, I don’t experience many truly sad days, just moments of sadness,” she remarks. “Most of those moments occurred when I would fall, but now, I’m taking precautions not to put myself in a position where that happens, knock on wood. When I did fall, it felt like the end of the world for those 20 minutes, as I struggled to get back up. Those instances were very frustrating. Nowadays, I’m just going with the flow.”