5 things to know about ALS

Many people first search for information about ALS (amyotrophic lateral sclerosis), commonly called Lou Gherig’s disease, after noticing unusual symptoms or after a loved one’s diagnosis. But how much do you actually know about the condition?

“ALS a progressive disease that impacts the nerve cells in the central and peripheral nervous system, leading to progressive muscle weakness over time,” said Richard Wlodarski, MD, a clinical neuromuscular specialist at Endeavor Health. “Roughly 30,000 people in the United States are living with ALS, with somewhere between 5,000 and 6,000 people are diagnosed annually.”

Dr. Wlodarski explains what we need to know about this disease and the challenges faced by those living with ALS and their loved ones.

What is ALS?

The disease targets nerve cells called motor neurons that control the voluntary muscle movements that allow us to move, breathe, eat and speak. ALS typically starts in the limbs before spreading to other parts of the body. While the muscles are affected, the senses — including sight, hearing and taste — remain intact.  

“ALS causes motor neurons to gradually deteriorate, meaning they can no longer send messages to the muscles and control how they operate,” explained Dr. Wlodarski. “Eventually, these motor neurons die and make it impossible for the muscle to function at all.”

People with ALS typically first notice weakness in a hand, arm, foot or leg that continues over days and weeks. Usually, the weakness will spread to another limb as well. Others may first notice they are having difficulty swallowing or that their speech is slurred. It’s important if you are experiencing symptoms like these to be evaluated by a neurologist right away.

Five facts you should know about ALS

1. Pain is not typically a symptom of ALS. While the body’s muscles are getting progressively weaker, the disease is not usually painful for patients.
2. The symptoms of ALS don’t always look the same for everyone. The way ALS affects each person depends on which nerve cells are being impacted by the disease. Common symptoms include:
   • Muscle twitching
   • Limb weakness
   • Slurred speech
   • Difficulty swallowing and/or chewing
   • Laughing or crying at inappropriate times
   • Trouble thinking or changes in behavior
   • Dementia
3. We still don’t know what causes ALS. “A small number of cases are inherited genetically, about 10%,” explained Dr. Wlodarski. “Researchers are studying what might cause this disease for the rest of the people who are affected, which they believe is likely a combination of genetic and environmental factors.”
4. There are environmental risk factors connected to ALS. Researchers have linked the following factors to an increased risk of developing ALS:
   • Smoking
   • Environmental toxin exposure, such as lead
   • Military service, possibly due to exposure to certain toxins, injuries or infections
5. ALS is a progressive disease. As it progresses, ALS gradually affects the muscles needed for movement, speaking and eventually breathing. While there is currently no cure, treatments and supportive care can help with managing symptoms and maintaining quality of life for as long as possible. In the later stages of ALS, complications such as breathing difficulties, swallowing challenges, or infections can occur, and these are important aspects of ongoing care and planning with healthcare providers.

Managing symptoms and supporting patients and families

Since ALS is not curable, care providers focus on symptom management and making the patient as comfortable as possible. Some medications can help relieve muscle cramping, while occupational, physical, speech or respiratory therapies can help manage worsening symptoms as the muscles deteriorate.

“It’s important that patients and family members work closely with their healthcare team to make sure the condition is being managed well,” said Dr. Wlodarski, “Professional counselors can help with navigating the emotional challenges of this disease and helping families make end-of-life decisions.”

There are many resources and support groups available for those living with ALS and their loved ones.

“Our team at Endeavor Health is here to support patients and families with the medical and emotional support they need to manage this disease,” said Dr. Wlodarski. “While ALS can be difficult, no one has to navigate it alone.”