5 Things to Know About ALS
A Michigan Medicine expert answers questions about this degenerative neurological disease — and works to defeat it.
It’s a debilitating condition that worsens over time, eventually proving fatal.
The ALS Association estimates that up to 30,000 Americans are living with amyotrophic lateral sclerosis, or ALS — a disease of the motor neurons in the brain, brain stem and spinal cord.
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,” says Stephen Goutman, M.D., assistant professor of neurology and director of the ALS Center of Excellence at Michigan Medicine. “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 patient. 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.
For example, our team at Michigan Medicine published a study that showed an association of pesticide exposures with ALS. We are now trying to determine whether exposures to these toxins can influence the symptoms that one has if he or she develops ALS.
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.
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 prescribe therapies such as riluzole, edaravone and noninvasive ventilation. We also promote weight maintenance through nutritional therapy. We have a dedicated multidisciplinary team to care for individuals and families living with ALS.
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.
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.