Along with providing information about ALS, Eby ties in humor to make it lighthearted and entertaining. It’s a hit with her over 200,000 followers.
Brooke Eby is 34 years old and lives in Bethesda, Maryland. She is living with ALS. It was a diagnosis that, in the beginning, caught her and her family off guard because of her age.
“My life for the first, I'll call it 29 years, was unrelatably perfect,” Brooke told Inside Edition Digital.
That all changed when her walking began to change.
“A few of my coworkers pointed out that I was limping, which when you're 29, you're like, "Okay, I probably pilate'd too hard," Brooke joked. “That’s what's so weird about ALS. For the amount of devastation the disease causes, the first symptom never seems like that big of a deal.”
Brooke shared her symptoms with her sister and her sister’s husband, both doctors. They inspected her walk and noticed it was different.
“So I would walk towards them on my heels, and my right foot would stay up. My left foot just kept slapping down to the ground. I couldn't hold it up,” Brooke recalled.
“I got an MRI. It was clean. I got an X-ray, and that was clean. And then they started noticing that my calf was atrophying, and it started looking really skinny. And they were like, ‘Okay, you're losing muscle, and you're limping. Something bigger is going on here.’”
Symptoms in her left foot continued for four years. Then, her right foot eventually began to weaken as well. Brooke returned to the doctor in March of 2022, and was officially diagnosed.
“I called my sister," she said, describing the difficult day. "She conferenced in my parents. I think I was crying, and I think my sister was crying. I think my parents were trying to hold it together, but also, everyone was just so shocked.”
“I went home from that appointment, got in my bed with a bag of M&Ms, and just sat there," Brooke said. "I remember I would Google ALS and then close out the window. Google it, and close out the window. I never imagined I would even come out of the funk that I was in. I was like, ‘What's the point? This is just my life now.’’
ALS, or amyotrophic lateral sclerosis, is a progressive neurodegenerative disease that affects nerve cells in both the brain and spinal cord, according to ALS.org. The condition is sometimes known as Lou Gehrig’s disease after the Yankee player who famously battled and died from the illness in 1941.
After her diagnosis Brooke had a pivotal moment in her journey when asked to be a bridesmaid.
"I had only been eating M&Ms for two months,” she notes. “The dress was too tight. I was showing up using a walker. I was just like, please, can I be invisible during this whole time?”
After confiding in her friend about feeling uncomfortable, her friend said, "What if we just made it really fun?"
And they did.
The video of wedding guests dancing with her walker and the bride limboing under the walker was a hit on social media.
“And I was just like, you know what? Screw it,” Brooke said. “I can still be myself. I can still laugh even at the darkest things, which has always been my coping mechanism. I think I just needed that whipping me back into shape.”
That mindset has since guided Brooke. She shares funny moments and makes light of more serious ones related to her illness on social media. Along with providing information about ALS, Brooke ties in humor to make it lighthearted and entertaining. It’s a hit with her over 200,000 followers.
“Honestly,” Brooke said, “it's been therapeutic for me because now I am, rather than thinking about every aspect of ALS as sad, I'm thinking of it as, where's the joke in this? It's somehow been a fun year and a half as much as it's been hard.”
Since being diagnosed, Brooke transitioned from a cane to a walker and now uses a wheelchair. This has improved her quality of life.
“People say wheelchair-bound,” Brooke said. “I feel like that's not even the right term for it, because I'm like, I have so much freedom now.”
“My legs are definitely weaker and weaker every day. Although I'm not using them much anymore now that I'm relying on the wheelchair. I just don't feel safe on my own two feet anymore. My breathing and my voice still feel really strong. My hands and arms still feel pretty good. It's just my abs and my legs that are not good.”
She’s made various living adjustments to make things easier at home. Her apartment is filled with gadgets, she has handlebars to push off items easier, a seat in her shower, and an electronic chair that can lift her from the ground if she falls. Brooke also has hand controls in her car so she can drive if needed.
Brooke is still very independent and continues to work full-time. She lives alone with her dog but knows the future may include changing her living arrangements with family or her boyfriend.
“Those are probably conversations my family and I will be having soon,” she said. “I'm not super excited to have them, but it's probably necessary at this point.”
“It's interesting getting a diagnosis at this age when you're supposed to be thinking about getting married or having a family. All my friends are having babies, and I'm like, do I really want to ask someone, ‘Hey, do you want to move in because I need the help?’"
Brooke’s new normal includes doing a lot of physical therapy and visiting doctors who specialize in occupational therapy, pulmonary function, neurology, and palliative care. Although she says it can be exhausting, it's necessary to stay on top of everything.
Although Brooke keeps a good sense of humor about ALS on her pages, she has revealed details about what she’s planned for challenging moments to come. Her end-of-life planning, her will, her medical directives, and how she wants to live as the illness progresses have been shared with followers.
She's also shared a bucket list, or as she calls it, an "adult Make-A-Wish" list. Some items, like appearing on her favorite podcast and hanging out with penguins, have already been crossed off. She is still holding out for one wish: to dine with Tina Faye, Amy Poehler, and Steve Carell.
Many moments will be difficult in the future, but Brooke feels prepared and grateful.
“I feel like those first 29 years built me a foundation to be able to approach this diagnosis in a much easier way than a lot of people have it. I've got a great family, I've got a great group of friends. Financially, I'm still working. I've got a lot of good building blocks to set me up for being able to manage this in a better way.”
For others dealing with ALS or any other illness, Brooke recommends finding a support group. She says the ones she’s found have been beneficial when she needs advice and wants to discuss obstacles related to the disease that can be difficult for people without it to connect to.
She also recommends that people dealing with difficulties keep their spirits up.
“Try to find the joke in it. That's my trick,” she said. “Everyone has different coping mechanisms, so lean into whatever yours is. Mine is clearly not taking anything seriously.”
When asked about her legacy, Brooke says advocating for ALS will be a large part of it.
“People are always like, ‘You don't want to define yourself by your disease,’" she states. “And I'm like, ALS has needed a face for a long time that people can relate to. And I think this next generation of people living with it are doing just that. They don't picture young, very much alive women. And there's a whole group of us living with it.”
“I just hope that people start thinking differently about ALS and caring more about it and not looking away because these heavy things are so easy to look away from. Especially now, when we're just swarmed by content we can pick from. Why would you want to look at something heavier? So, I just hope people are shining more light on this disease, and if my content can help that, that's great.”
For more information on ALS, visit ALS.org.
