November is National Family Caregivers Month, a time to honor and thank the incredible people who dedicate themselves to caring for their loved ones. For those living with ALS, caregivers are the unsung heroes, standing by their side through the ups and downs of this challenging disease.

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One such hero is Cliff Eby, a father, husband, and co-caregiver to his vivacious daughter, Brooke, who was diagnosed with ALS in 2022 at the age of just 33.

When Brooke was first diagnosed, the news hit the family hard. ALS is a devastating diagnosis, and for her to receive it so young was especially shocking. "I think we were all just in disbelief," Cliff recalls. "Brooke jokes about how it took two months for her to get out of bed after the diagnosis, but for us, it probably took even longer to fully process it."

After coming to terms with her diagnosis, Brooke decided she wanted to begin sharing her story publicly on social media to help raise awareness of the disease. "I was concerned about the negativity on social media and how her employer might react," he admits. However, her openness about her journey has been met with overwhelming positivity, with only the rare negative comment sprinkled in among thousands of supportive messages​.

Brooke’s online presence, where she shares everything from ALS updates to makeup tutorials, has not only raised awareness, but also given the family a sense of purpose. "It’s so inspiring to see how she’s taken this terrible disease and turned it into something positive," Cliff says. "I could never have predicted this when she started posting, but I’m so proud of her."

Caregiving is a Team Effort

Cliff doesn’t take on his caregiving role for Brooke alone. As he humbly puts it, "I’m really a co-caregiver, maybe even a one-third caregiver." He admits his wife Ginny plays a major role, focusing on the emotional side of Brooke’s care, while he takes a more practical, problem-solving approach​. Their caregiving team also includes an assistant who helps out three times a week, showing that ALS caregiving is very much a team sport.

"Caregivers are so important in the life of someone with ALS," Cliff says, reflecting on the essential support he and his family provide to Brooke. "With ALS, you just never know when the next challenge will come. That’s why you need multiple caregivers—it’s an unpredictable disease." For the Eby family, flexibility and a willingness to adapt have been crucial in navigating her changing needs​.

Cliff says his background as an engineer influences how he approaches caregiving. Ever the problem-solver, he often tackles the mechanical and logistical challenges that come with ALS. Whether it’s figuring out how to adjust a piece of equipment, or finding a way to make Brooke’s day easier, Cliff approaches each task with a sense of purpose.

His role as a caregiver is one that evolves, just like the disease itself. Yet, despite the constant hurdles, Cliff remains positive and upbeat, always looking for ways to make things work better​.

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Cliff says that while the practical side of caregiving can be intense, it’s not without its lighthearted moments. He fondly recalls the time Brooke performed stand-up comedy at a fundraising gala, opening her routine with, "I’m going to do stand-up for the first time, even though I can’t actually stand up." He laughed as he shared one of Brooke’s favorite jokes: "One of the benefits of having ALS is that when you run over someone’s toes in your wheelchair, they apologize to you!"

This humor is a lifeline for the Eby family and is their way of coping with the heavy realities of ALS and finding joy amidst the challenges. As Brooke says, "Fun is my number one value," and it’s clear that her sense of humor helps keep the family’s spirits high​.

Finding Hope in Community

Being part of the ALS community has helped the Ebys find hope in an otherwise daunting situation. "At first, attending ALS events was tough," he said. "You can’t help but wonder, 'Is this our future?' But over time, you realize that everyone’s journey with ALS is different."

He has found great comfort in talking with other caregivers and families facing similar challenges. Sharing stories, advice, and encouragement has created a sense of solidarity. "It’s nice to learn from others and share what works for us," he says. "The ALS community has been incredibly supportive, and it’s encouraging to see how many people are fighting alongside us."

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Brooke’s growing fame within the ALS world has brought an unexpected layer of recognition for the entire family. "At first, it was awkward," Cliff admits, "but it’s also nice to be recognized for the work we’re all doing to raise awareness and fight this disease."

Advice for Fellow Caregivers

When asked what advice they would give other caregivers and families navigating life with ALS, they said first and foremost, "Do your best." This simple yet powerful message came from a six-year-old boy they met at ALS Nexus, who answered the question "What’s your name?" with, "I’m doing my best." That phrase stuck with Cliff and has become a mantra for their family​.

He emphasizes the importance of reaching out for help, leaning on others, and not being afraid to ask questions. "There’s a lot to learn, and nobody expects you to know everything right away."

For Brooke, humor has been her greatest coping mechanism. "I’d rather laugh than cry," she says. "ALS can be pretty absurd at times, so I just try to find the comedy in it." Her advice to others facing the disease? "Stay loud. ALS has been a quiet disease for too long. We need more advocates, more voices, and more awareness."

Hope for the Future

Despite the many challenges, the Eby family remains hopeful for the future. "What gives me hope is seeing people who have lived with ALS for 20 years," Cliff says. "It’s amazing to meet people whose disease has plateaued, and I hope that Brooke will hit that plateau too."

For Brooke, hope comes from the progress being made in ALS research. She finds comfort in talking to doctors and researchers who are passionate about finding a cure. "It helps to know that people are working on it, and that breakthroughs could be closer than we think."

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In the meantime, Brooke and Cliff focus on the present, taking things one day at a time and finding joy wherever they can. "We’re hopeful, but we’re also realistic," Brooke says. "We know that ALS is tough, but we’re tougher." 

For those living with ALS and their families, Cliff’s message is simple, yet profound: "Do your best. That’s all anyone can ask." And sometimes, doing your best means laughing through the pain, finding joy in the little moments, and holding on to hope for a brighter tomorrow. 

Special thanks to Cliff and Brooke for allowing us to share their inspiring story with the ALS community in honor of National Family Caregivers Month.

Additional information and resources just for caregivers can be found on our website HERE.

To learn more about how you can get involved in the fight against ALS, visit our website HERE.

To continue to follow stories about people living with ALS in the community and learn more about the disease, follow our blog HERE.

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