What Everyone Should Know About ALS After Chris Johnson's Diagnosis

When former NFL running back Chris Johnson appeared on Good Morning America to reveal his amyotrophic lateral sclerosis (ALS) diagnosis, viewers were introduced or reintroduced to a disease that remains one of the most devastating and least understood neurological conditions in medicine. Johnson, 40, was diagnosed last year after noticing weakness in his right hand, and his condition has progressed rapidly. He now uses his eyes to trigger a speech-generating device to communicate.

"I want people to know I am still me," Johnson said. "ALS has changed what my body can do, but it hasn't changed who I am."

His decision to go public is already doing what he hoped. It is getting people to ask questions about ALS, and those questions deserve real answers.

What Is ALS?

ALS, or Lou Gehrig's Disease, is a progressive neurodegenerative disease that affects the nerve cells in the brain and spinal cord responsible for controlling voluntary muscle movement. As those motor neurons deteriorate and die, the brain loses its ability to initiate and control muscle activity. Over time, patients may lose the ability to speak, swallow, move and, eventually, breathe. According to the ALS Association, the disease eventually leads to death, and patients in later stages may become totally paralyzed.

ALS affects approximately 30,000 Americans at any given time, with roughly 5,600 new diagnoses made each year in the United States. The disease does not discriminate. It affects people of all races, ethnicities and backgrounds, though it is about 20% more common in men than women. However, with increasing age, the incidence of ALS is more equal between groups. It is most frequently diagnosed between the ages of 40 and 70, with an average age of 55 at the time of diagnosis. However, cases of the disease do occur in people in their 20s and 30s.

What Are the Early Signs?

Early symptoms of ALS can be subtle and easy to attribute to other causes, which is part of why the disease is so often diagnosed late. Common early warning signs include muscle weakness or twitching in the arms, legs, shoulders, or tongue; difficulty with fine motor tasks such as gripping or buttoning clothing; slurred speech; difficulty swallowing; and muscle cramps. Johnson's first symptom was weakness in his right hand; a grip that simply did not feel right.

Because these symptoms overlap with many other conditions, the path to an ALS diagnosis can be long and frustrating. There is no single definitive test for ALS. Diagnosis typically involves a combination of neurological exams, electromyography, nerve conduction studies and imaging to rule out other conditions.

What Treatments Are Available?

There is currently no cure for ALS. The U.S. Food and Drug Administration has approved several medications that may modestly slow the progression of the disease or extend survival, including riluzole, edaravone and, more recently, tofersen for a specific genetic form of ALS. Tofersen is the first-ever gene-targeted therapy for ALS. There is evidence that the drug may not just slow disease progression, but in some cases help reverse some of the lost function, something that scientists did not think possible. Clinical trials are ongoing and represent a meaningful source of hope for patients and families. Johnson himself cited the progress being made in research as a source of strength.

"Right now there isn't a cure, but we are seeing more research, more clinical trials, and more promising ideas than ever before," he said. "As long as they are fighting for people with ALS, I am going to keep fighting, too."

Patients are also encouraged to seek care at a multidisciplinary ALS clinic, where neurologists, respiratory therapists, speech pathologists, nutritionists and social workers coordinate care under one roof, an approach that research suggests improves both quality of life and survival. For 98% of people living with ALS, multidisciplinary care is the most effective treatment option available.

Where to Find Support

The ALS Association offers a comprehensive network of resources for patients and caregivers, including care services, clinical trial matching and financial assistance. The organization also offers a helpful guide to find support groups for patients, caregivers and families impacted by ALS. They are available at both the local and national level, and are designed to create a safe place for people to get practical, constructive and helpful information.

Johnson's message to anyone facing this diagnosis echoes what clinicians have long advised: seek support early, ask questions and know that you are not alone.

"If sharing my story helps even one person get diagnosed sooner, inspires more research or gives another family hope," he said, "it is worth it."