Brooke Eby, a 36-year-old woman from Maryland, has been documenting her heart-wrenching journey with ALS (amyotrophic lateral sclerosis) through emotional videos shared on Instagram.
In just a short year, Brooke has gone from being a healthy, active woman to being completely dependent on a wheelchair.
Her story is one of courage in the face of a devastating and incurable disease.
ALS Diagnosis and Rapid Decline
Brooke was diagnosed with ALS in 2022, after experiencing subtle symptoms for years.
The muscle-wasting disease, which is often fatal, slowly robs people of their ability to move, speak, and even eat.
Despite being a business development manager who had lived a relatively normal life, the diagnosis changed everything for her.
In less than a year, Brooke found herself struggling to walk without assistance.
By June, she was using a walking stick; by December, she was permanently reliant on a wheelchair.
In her viral video, which has already reached over half a million views, Brooke reveals the extent of her condition.
Her arms, once strong, are now so weak she struggles to lift them.
Her muscles continue to deteriorate, and even the simple act of lifting a phone has become a significant challenge.
“I can’t feed myself that well,” Brooke shared, explaining how her weakened arms and shoulders have made daily tasks nearly impossible.
The Emotional Toll and “Progression Update”
In an update posted earlier this month, Brooke reflected on her condition three years after her diagnosis.
“At this point, we can skip the legs because we know those have not worked in a while,” she said.
Her left arm, which is now bent inward, is no longer functional.
The same is happening to her right arm, with both muscles weakening rapidly.
Her shoulders have started to atrophy, and her hands show signs of further deterioration.
“My arms have gotten weaker, and now, I can’t even lift my arms to look at my phone,” she explained.
In addition to the physical challenges, Brooke also shared how her voice has been affected.
She has to take deep breaths before speaking and often feels like someone’s pushing against her when she tries to move her head downward and back up.
“Other than that, I’m just feeling pretty rough,” she admitted.
“I feel like I’m waking up either nauseous, in pain, restless, or exhausted. I miss waking up and feeling good.”
The Early Signs and Struggle to Accept the Diagnosis
Brooke’s journey with ALS began subtly at 29 when she first noticed a tightness in her left calf.
She also started walking slower but attributed it to age and didn’t think much of it.
After three years of tests and scans, she was finally diagnosed with ALS.
The news was difficult for her to accept, and it took two months before she could even say the word “ALS” out loud.
In an emotional post, Brooke shared the difficulty she faced in telling others about her diagnosis.
Attending a friend’s wedding shortly after her diagnosis, Brooke was visibly struggling with her new reality, using a walker to get around.
“I turned to my friend so embarrassed,” she recalled.
“I said, ‘I think we’ve got to leave.’
But she said, ‘No, this could be really embarrassing, but we could just make it really fun.'”
True to her resilient spirit, Brooke soon found herself laughing and having fun at the wedding.
“An hour later, I had the bride limbo-ing under my walker,” she recalled.
“I was giving walker rides on the dance floor. Making people laugh makes me so much more comfortable.”
Understanding ALS: A Disease with No Cure
ALS is a rare and progressive disease that affects the nervous system, leading to muscle weakness, twitching, and ultimately paralysis.
There is no cure, but treatments can help manage symptoms and slow the disease’s progression.
In the UK alone, about 5,000 adults are living with ALS, and the risk of developing it during a person’s lifetime is about 1 in 300.
The disease has a rapid progression, and in many cases, people live only two to five years after the first symptoms appear.
However, some individuals may live longer, as seen in the case of physicist Stephen Hawking, who lived with ALS for decades.
Unfortunately, the disease often affects otherwise healthy individuals, and the cause remains largely unknown.
Genetic, environmental, and possibly lifestyle factors are believed to contribute to its onset.
In a tragic reminder of ALS’s impact, Rob Burrow, a former rugby star in the UK, passed away in 2024 after battling the disease for several years.
What’s Next for Brooke?
As ALS continues to progress in Brooke’s body, the fight for awareness and support remains her mission.
Her updates not only shed light on the personal struggles of living with ALS but also serve as a powerful reminder of the importance of medical research, support networks, and public awareness of the condition.
Brooke’s story is one of incredible resilience in the face of an unpredictable and heartbreaking diagnosis.