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What is ALS? Experts explain symptoms to watch out for, causes, and treatments

Sandra Bullock’s old partner Bryan Randall passed away at age 57 after a personal battle with ALS, or amyotrophic lateral sclerosis, for three years, his family said. The news brought new attention to the disease and raised questions about what the diagnosis means.

ALS is a progressive neurodegenerative disease that affects nerve cells in the brain and spinal cord, rendering the brain unable to control muscle movements. As the disease progresses, people eventually lose their ability to speak, eat, move and breathe, according to the ALS Association.

It is also known as Lou Gehrig’s disease, for the legendary New York Yankees player who was stricken with it in the late 1930s.

More than 30,000 people are estimated to be living with ALS in the United States, and an average of 5,000 people in the US are diagnosed with ALS each year, according to the Centers for Disease Control and Prevention.

“ALS is a devastating disease,” Dr. Sandeep Rana of Allegheny Health Network recently CBS News Pittsburgh. “It’s a neurological disease where patients start to get weak. They lose muscle strength. They lose muscle mass.”

What Causes ALS?

Experts don’t know the exact cause of ALS. Only a small proportion of cases appear to have a genetic component.

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“About five to ten percent of all ALS cases are familial (also called hereditary or genetic). Mutations in more than a dozen genes have been found to cause familial ALS,” notes the National Institutes of Health.

Nearly all other cases of ALS are considered sporadic, the NIH explains, meaning the disease “appears to occur randomly with no clearly associated risk factors and no family history of the disease.”

According to the ALS Association, the disease can strike anyone at any time, but most commonly occurs between the ages of 40 and 70.

The average life expectancy with the disease is 2 to 5 years.

ALS symptoms

According to the NIH, early signs and symptoms of the disease include:

  • Twitching in the arm, leg, shoulder, or tongue.
  • Tight and stiff muscles.
  • Muscle weakness in an arm, leg, neck, or diaphragm.
  • Slurred and nasal speech.
  • Difficulty chewing or swallowing.

As the disease progresses, the symptoms of muscle weakness spread to other parts of the body, making daily life more difficult, including:

  • Inability to stand, walk, or use hands and arms.
  • Problems chewing and swallowing food.
  • Difficulty speaking or forming words.
  • Difficulty breathing.
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“People with ALS eventually lose the ability to breathe on their own and are dependent on a ventilator,” says the NIH. “Most people with ALS die of respiratory failure.”

ALS treatments

Currently, ALS has no cure and no treatment to reverse its progression. The FDA has approved several medications, but their advantages are limited.

The search for new answers to fight ALS was the inspiration behind the immensely popular Ice Bucket Challenge ten years ago, raising more than $200 million for research. But patients and families are still waiting for breakthroughs.

Ice Bucket Challenge at Fenway Park - players and staff showered with buckets of water to raise money for ALS research
Red Sox players and staff participate in the Ice Bucket Challenge at Fenway Park, with co-founders Pete Frates, center, and Pat Quinn, departing July 31, 2015. Frates died in 2019 and Quinn in 2020 from ALS.

Arthur Pollock/MediaNews Group/Boston Herald via Getty Images

For now, options to help people with the disease include supportive healthcare from doctors, home health nurses, and other medical professionals.

“These teams can create an individualized treatment plan and provide special equipment to keep people as mobile, comfortable and independent as possible,” the NIH explains.

In a statement, Bryan Randall’s family thanked the “tireless doctors” and “amazing nurses” who helped care for him, “often sacrificing their own families to be with ours.”

Patients may also benefit from physical therapy and occupational therapy; speech therapists, who can help them maintain the ability to communicate; and nutritionists, who can plan and prepare balanced meals that are easier to swallow.

Artificial intelligence is also starting to play a role in helping ALS patients communicate. CBS News chief medical correspondent Dr. Jon LaPook recently reported new technology that helps patients speak through a process called voice retention.

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