This article was last updated on May 18, 2022. 

It's a debilitating condition that worsens over time, eventually proving fatal.

The National ALS Registry estimates that up to 32,000 Americans are living with amyotrophic lateral sclerosis, or ALS — a disease of the motor neurons in the brain, brain stem and spinal cord.

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Also known as Lou Gehrig's disease, it presents an emotional challenge not only for patients but also for their loved ones.

Still, "just because someone gets ALS, it doesn't have to define them," said Stephen Goutman, M.D., associate professor of neurology and director of University of Michigan Health's Pranger ALS Clinic. "It is a difficult, complex disease, and we're all in this together."

He answered some common questions about ALS causes, research and treatment.

What symptoms might precede an ALS diagnosis?

Goutman: The clinical presentation of ALS is typically some form of weakness, although it presents differently for every person. While some may experience difficulties with fine hand movements, like buttoning a shirt, others may notice foot weakness, and some may have trouble with talking, swallowing or breathing.

A frustration for many of the individuals that I care for is not knowing the cause of their symptoms. In fact, on average, it takes over a year for someone to be diagnosed with ALS once they start developing symptoms. This can be irritating to know something is wrong but not know why. Individuals often undergo several studies including blood tests, MRIs and electrodiagnostic studies (often referred to as EMGs).

What causes ALS?

Goutman: This is a complex question, and we do not know the complete answer. We know that there are genetic factors, and we believe, especially in a person without a family history of ALS, that exposures to environmental toxins make some people more susceptible to develop ALS.

SEE ALSO: U-M Researchers, Fans and Hockey Players Team Up to Put ALS on Ice

For example, our team at Michigan Medicine published a study that showed an association of pesticide exposures with ALS. We have also shown that individuals with higher levels of these toxins in blood have a faster disease progression.

More recently, we have found that certain work settings and exposures associate with an increased ALS risk. These include production occupations and occupationally-related metals exposures. However, we do not know if the risk is the same for all individuals. What is needed now is to develop personalized strategies to help each individual reduce their chance of developing ALS. For example, for one person an exposure to lead may be critical, whereas for someone else it could be a pesticide exposure. We are working on the tools needed to help make these predictions so that one day we can prevent people from developing ALS altogether.

We also are concerned about the possibility of clusters of ALS, and Michigan is one of those geographical areas that seems to have a higher burden of ALS. That's another topic we are studying.

How has awareness of ALS risen?

Goutman: Baseball legend Lou Gehrig was the first well-known American to suffer from ALS in the late 1930s, but the disease was first described in the 1860s.

After the ice bucket challenge a few years ago, public awareness of the disease is even higher. It allowed people who have never been touched by ALS to understand how devastating it is. We're still working toward determining what causes ALS and finding ways to defeat it.

How is ALS treated?

Goutman: Unfortunately, we do not yet have a treatment that stops or reverses ALS, although we are working hard to find one. What we do have are good therapies that can manage symptoms and improve quality of life. Because ALS is unique to each person, it's also an art to manage symptoms. We have a dedicated multidisciplinary team to care for individuals and families living with ALS.

In our clinic, we focus on helping our patients live life to its fullest. We do this by helping improve mobility and safety and minimize other symptoms. We also promote weight maintenance through nutritional therapy.

When it comes to specific therapeutics and medications for ALS, we prescribe a few therapies such as riluzole, edaravone and noninvasive ventilation. However, we continue working to develop better, personalized treatment approaches. We believe that certain groups of ALS patients may respond to different therapeutics in a different way, but we don't yet know how best to identify these groups and align the correct treatment options. Part of our work, with the tremendous partnership of Dr. Benjamin Murdock, focuses on identifying personalized immune-based targets in persons with ALS.

What's next?

Goutman: Our team at Michigan Medicine and other researchers across the country are steadfastly working to determine how to halt the disease, what the root cause is and whether we can prevent ALS from manifesting in the first place. We are hopeful that the ACT for ALS, a new law signed in December by President Biden to provide more funding to address neurodegenerative diseases, will bring new therapies into the clinic sooner.

Until we defeat ALS, we continue to integrate research from the lab and bedside to provide personalized care to our patients. If you have ALS, you can help us and other researchers nationwide by participating in clinical trials through U-M Health Research or ClinicalTrials.gov.

Our data also highlight that we can all make a difference. Small changes that we each make to keep our environment clean and free from chemicals and toxins can have a lasting impact on our collective health.

For more on the team's research into the connection between ALS and organic toxins, listen to Goutman's interview on Michigan Radio.

Learn more about Scott Matzka, who is featured in the hockey photo above, on his website.