What Is ALS? Symptoms, Causes, and Life Expectancy

Brooke Eby, the TikTok creator who spent more than four years turning a diagnosis of amyotrophic lateral sclerosis (ALS) into a masterclass in candor and humor, died on October 1, 2026, at age 37. Her passing, confirmed by the ALS Network, has drawn fresh attention to a rare, progressive, and ultimately fatal neurological disease that most people still struggle to understand. Also known as Lou Gehrig's disease, ALS gradually destroys the nerve cells that control voluntary movement — yet its early signs are easy to miss, its cause remains largely unknown, and no cure exists. Here's what to know about how ALS actually works, the warning signs to watch for, and what treatment can and cannot do.

What Is ALS? Understanding Lou Gehrig's Disease

Amyotrophic lateral sclerosis, or ALS, is a progressive neurodegenerative disease that attacks motor neurons — the nerve cells in the brain and spinal cord that send signals to the muscles we control voluntarily. As these neurons degenerate and die, they stop delivering messages to the muscles, which begin to weaken, twitch, and waste away. Over time, ALS takes away the ability to walk, speak, swallow, and eventually breathe without assistance.

The name itself describes the damage: 'amyotrophic' means the muscles aren't being nourished, 'lateral' refers to the sides of the spinal cord where the affected nerve cells sit, and 'sclerosis' describes the scarring that appears as those cells are lost. The condition is better known as Lou Gehrig's disease, named for the New York Yankees first baseman who was diagnosed in 1939 and died just two years later.

Brooke Eby became one of the disease's most visible faces. A Montgomery County, Maryland native, Eby was 33 years old when she received her diagnosis in March 2022. Rather than retreat, she went public, building a following of more than 300,000 people on TikTok under the handle @limpbroozkit, where she documented everything from muscle cramps to everyday frustrations with disarming humor. She later founded ALStogether, a community for people living with the disease, and worked alongside organizations including the ALS Association, the ALS Network, and the Muscular Dystrophy Association to raise awareness and funding for research. Both The New York Times and Rolling Stone profiled her unusual decision to treat a terminal diagnosis as a stage.

From First Symptoms to End Stage: How ALS Progresses

ALS doesn't follow a single script, but its trajectory is broadly predictable. For roughly 80% of people, the disease first shows up as what doctors call limb onset: weakness, cramping, or twitching in the hands, arms, legs, or feet. Someone might notice they're dropping things, tripping more often, or struggling with buttons. In the remaining 20% or so, it begins in the muscles that control speech and swallowing — a form called bulbar onset — producing slurred or thick speech and trouble chewing or swallowing.

From that starting point, ALS spreads. Weakness expands to additional muscle groups, and functions that once felt automatic become difficult or impossible. In later stages, the muscles that power breathing are affected, which is why respiratory failure is the most common cause of death. Some people also develop pseudobulbar affect, episodes of uncontrollable laughing or crying that don't match how they actually feel.

Eby's own timeline illustrates the pace. Diagnosed in March 2022 at 33, she spent the next four-plus years documenting her gradual decline while maintaining her signature wit. By the time of her death on October 1, 2026, her account had become both a public diary and a rallying point for the ALS community.

ALS Symptoms, Causes, and Risk Factors

The earliest signs of ALS are often subtle, which is one reason diagnosis can take a year or more. Common early symptoms include muscle twitching (called fasciculations), cramps, and stiffness; weakness in a hand, arm, leg, or foot; slurred or slowed speech; and trouble swallowing. Notably, ALS affects motor function rather than the senses — most people keep their ability to see, hear, taste, smell, and feel, and their thinking usually remains intact.

What causes ALS? For about 90% of people, the disease appears with no clear trigger; doctors call this sporadic ALS. The remaining 10% have familial ALS, caused by inherited genetic mutations. The most common culprit is the C9orf72 gene, involved in roughly 40% of familial cases and a smaller share of sporadic ones, followed by SOD1, TARDBP, and FUS. Beyond genetics, researchers believe ALS likely results from a combination of factors, including age and possibly environmental exposures, though no single cause has been confirmed.

Some patterns stand out. ALS is most often diagnosed between ages 40 and 70, with onset averaging in the mid-50s, and it's slightly more common in men than women, a gap that narrows with age. In the United States, an estimated 30,000 to 35,000 people are living with ALS at any given time, and about 5,000 new cases are diagnosed each year.

Because no single test can confirm ALS, diagnosis is a process of elimination. Neurologists typically use electromyography (EMG) and nerve conduction studies, which measure electrical activity in muscles and nerves, along with MRI scans and blood and urine tests to rule out conditions that mimic ALS. A pattern of progressive weakness combined with evidence of both upper and lower motor neuron damage is what ultimately points to the diagnosis.

How Is ALS Treated? Current Options and Limitations

There is no cure for ALS, but treatment has advanced considerably. The goal is to slow progression, manage symptoms, and preserve quality of life and independence for as long as possible.

The medication riluzole, sold under brand names like Rilutek and Tiglutik, has been a mainstay since the 1990s and can extend survival by a few months on average — modest, but meaningful for a disease with such a short prognosis. Edaravone (Radicava) may slow the decline in physical function, particularly for people in earlier stages. For the small percentage of patients whose ALS is tied to the SOD1 gene, tofersen (Qalsody) is a targeted therapy that addresses the underlying genetic cause.

Equally important is multidisciplinary care. Physical and occupational therapy, speech therapy, breathing support through noninvasive ventilation, feeding tubes when swallowing becomes unsafe, and mobility aids all help people with ALS live more comfortably. The average life expectancy after diagnosis is two to five years, but the range is wide: about 30% of people live more than five years, and about 10% live a decade or longer. The late physicist Stephen Hawking, diagnosed at 21, lived with the disease for more than 50 years — an exceptional outlier that underscores how variable ALS can be.

The Road Ahead: ALS Research and Eby's Legacy

Research into ALS is accelerating. Scientists are pursuing gene-targeted therapies modeled on tofersen, biomarkers that could enable earlier diagnosis, and experimental drugs designed to protect motor neurons before they're lost. Organizations like the ALS Association, buoyed by years of Ice Bucket Challenge-era momentum, have funneled hundreds of millions of dollars into clinical trials.

Eby's impact is already woven into that effort. By refusing to hide the unglamorous reality of ALS — and by making people laugh while she did it — she humanized a disease that's often discussed only in clinical terms. The ALS Network, in announcing her death, called her "an ALS advocate, storyteller, founder of ALStogether, community builder, and our dear friend," and credited her with helping people living with ALS find one another and helping families feel seen.

Key Takeaways About ALS

• ALS, or Lou Gehrig's disease, is a progressive neurological disease that destroys the motor neurons controlling voluntary movement.
• Early signs include muscle twitching, cramps, weakness in a limb, slurred speech, and trouble swallowing — often subtle at first.
• About 90% of cases are sporadic with no known cause; roughly 10% are inherited, most often linked to the C9orf72 and SOD1 genes.
• Life expectancy averages two to five years after diagnosis, though roughly 10% of people live a decade or longer.
• There is no cure, but medications like riluzole and edaravone, targeted therapies, and multidisciplinary care can slow progression and improve quality of life.
• Brooke Eby, who died October 1, 2026, at 37, turned her own ALS diagnosis into a movement for awareness, community, and research funding.