Brooke Eby, a prominent content creator and influencer, recently shared a deeply personal and sobering health update with her followers on Instagram and TikTok. After years of navigating mysterious muscular symptoms, Brooke received a diagnosis of Amyotrophic Lateral Sclerosis (ALS), a terminal degenerative nervous system disease, in 2022. The latest news from her medical appointments paints a concerning picture, underscoring the relentless progression of this debilitating condition.
In her video, Brooke recounted a recent visit with her neurologist, an appointment she described as a "bust." While medical appointments are often anticipated as a source of potential hope or a chance to explore new treatment options, this particular visit left Brooke feeling disheartened. The details of the appointment highlight the challenges individuals face when navigating complex illnesses and the healthcare system.
Interestingly, the neurologist's examination was brief, focusing primarily on a visual assessment of Brooke's tongue. While seemingly trivial, this simple examination can provide clues about muscle function and neurological health. However, Brooke's remark, "Your tongue is great. Not the first time!" reveals her ability to maintain a sense of humor amidst difficult circumstances, a testament to her resilience and spirit.
Brooke, who relies on a wheelchair for mobility and a BiPAP machine to assist with breathing, also inquired about a pulmonary function test. These tests are crucial for monitoring respiratory health, a critical aspect of ALS management as the disease weakens the muscles that support breathing. However, she was informed that further testing was deemed unnecessary due to her already significantly diminished lung capacity.
The neurologist's explanation for foregoing the pulmonary function test centered on limited funding and resources, a stark reality for many medical facilities. While understandable from an administrative perspective, this explanation deeply resonated with Brooke, who questioned the rationale behind not collecting comprehensive data on a disease where progression patterns are not fully understood. Her frustration underscores the need for continued research and improved resource allocation for ALS and other rare diseases.
Despite the disappointing nature of the appointment, Brooke directly addressed the crucial question of her prognosis. She inquired whether obtaining an updated breathing measurement would provide a clearer picture of her future trajectory. The neurologist's response, "Your prognosis is not good. It's not good. You're very terminal," delivered with blunt honesty, left a lasting impact.
Ironically, Brooke found a moment of levity in the starkness of the news. "And that was the only time I laughed that entire day," she confessed, highlighting the coping mechanisms individuals often develop when facing overwhelming circumstances. Humor, in this context, serves as a shield against despair, allowing a brief respite from the emotional weight of the situation.
Brooke revealed that her current breathing function is at a concerningly low level, registering at a mere 12 out of 100. This figure underscores the significant impact ALS has had on her respiratory system, making each breath a conscious effort. Sharing this information with her friends elicited understandable concern, highlighting the emotional toll the disease takes on both the individual and their support network.
Despite the gravity of the situation, Brooke expressed a remarkable sense of acceptance. "Maybe I'm just numb to it all, but I was not all that concerned. We all knew where this train was headed. So don't get all mushy on me now," she declared. Her words reflect a deep understanding of her condition and a determination to face the future with strength and resilience.
ALS, also widely recognized as Lou Gehrig's Disease, is a progressive neurodegenerative disease that affects nerve cells in the brain and spinal cord. As the motor neurons degenerate, they stop sending messages to the muscles, leading to muscle weakness, twitching, and eventually paralysis. The disease progressively impairs speaking, swallowing, and breathing.
The connection between ALS and the name "Lou Gehrig's Disease" stems from the tragic story of Henry Louis "Lou" Gehrig, a celebrated American baseball player. Born in 1903, Gehrig achieved legendary status, setting records that stood for decades. He was nicknamed "The Iron Horse" for his incredible endurance and consecutive game streak.
However, Gehrig's stellar career took a devastating turn when his performance began to decline inexplicably. In 1939, on his 36th birthday, he received the life-altering diagnosis of ALS. The disease progressed rapidly, forcing him to retire from baseball just two days after the diagnosis was confirmed.
Gehrig's public acknowledgment of his condition brought ALS into the national spotlight. His farewell speech at Yankee Stadium, delivered shortly after his diagnosis, remains one of the most poignant moments in sports history. He humbly expressed his gratitude for the opportunities he had been given, despite the cruel hand he had been dealt.
Tragically, Lou Gehrig succumbed to ALS just two years after his diagnosis, passing away on June 2, 1941. His fame and the widespread media coverage of his battle with the disease led to ALS becoming commonly known as Lou Gehrig's Disease, particularly in North America. His story serves as a reminder of the devastating impact of this illness and the urgent need for research and effective treatments.
Typically, the life expectancy for individuals diagnosed with ALS ranges from two to five years, as reported by ALS United, an organization dedicated to supporting individuals and families affected by the disease. However, it's important to remember that this is just an average, and the course of the disease can vary significantly from person to person.
Brooke's journey with ALS began approximately seven years ago when she first noticed a tightening sensation in her calf, which led to a noticeable limp. However, it took four years for her to receive an official diagnosis of ALS. This diagnostic delay highlights the challenges in accurately and promptly identifying the disease, often due to the variability of initial symptoms and the need to rule out other potential conditions.
As ALS progressed, Brooke gradually lost her ability to walk, transitioning from using a cane to relying on a wheelchair for mobility. This physical decline has profoundly impacted her life, leading to frustration and a sense of loss. The loss of mobility is a common and devastating consequence of ALS, significantly affecting independence and quality of life.
"I absolutely hate being paralyzed. I hate it so much," Brooke shared candidly, expressing the raw emotions associated with her physical limitations. Her words resonate with the experiences of countless individuals living with paralysis, highlighting the daily challenges and emotional burdens associated with this condition.
Brooke vividly described the insidious nature of ALS, comparing it to an intruder gradually encasing her body in cement. "It feels like someone started sneaking into my room in the middle of the night seven years ago, and first they just poured cement over one of my feet, and a few years later, they poured it over the other foot, and then in the last year, they've poured it over my entire body," she explained. This powerful analogy captures the progressive and debilitating effects of the disease.
In her journey, Brooke has become an advocate for raising awareness about ALS and connecting with others who share similar experiences. She is actively involved with organizations dedicated to supporting the ALS community, striving to provide hope and resources to those affected by this devastating disease. Her openness and willingness to share her story have made her an inspiration to many.
Another individual battling ALS, as shared by , poignantly expressed the constant presence of the disease in their life. "I will never forget those three letters," he said, referring to ALS. "It's on me the second I wake up. It's not a dream." This powerful statement encapsulates the unrelenting reality of living with ALS, a condition that permeates every aspect of daily life.
Brooke's decision to openly share her health battle soon after her ALS diagnosis reflects her courage and commitment to raising awareness. By documenting her experiences, she has provided valuable insights into the realities of living with ALS, challenging misconceptions and fostering greater understanding.
As ALS weakens her muscles, Brooke relies on a wheelchair for mobility and a BiPAP machine to support her breathing. These assistive devices are essential for maintaining her quality of life and independence. They represent the ongoing adaptations and adjustments individuals with ALS must make to navigate their daily routines.