Helping People Live Better with ALS
Amyotrophic lateral sclerosis (ALS) is a rare progressive neurodegenerative disease that causes hardening in the brain and the spinal cord, which damages nerve cells. This nerve cell damage will eventually compromise a person’s ability to move their muscles voluntarily, affecting their ability to walk, speak, eat, or breathe. It is also called Lou Gehrig’s disease, named for the New York Yankees player who was diagnosed with the condition in 1939.
Increasing awareness of ALS—for example the Ice Bucket Challenge that began in 2014 and raised more than $220 million—has accelerated research for advancements in treatments and adaptive devices that help people with the condition live better, longer lives.
What causes it?
The cause of ALS is unknown. More than 40 gene mutations are linked to it, but only a tenth of people who have it have one of those mutations. In those cases when it has a genetic cause, it’s referred to as familial ALS. For the remaining 90% of cases, there’s no known family history.
What are the stages?
Each person progresses through the stages of ALS on their own timeline. Some people will progress through the stages within a few years, while others will progress through them for 10 or even 20 years.
Early on, symptoms may be subtle. They often involve the muscles that control movement of the hands, arms, legs, or feet, or the muscles that control speech and swallowing. Early signs may include having difficulty lifting a glass or changing the pitch of one’s voice. Eventually, ALS will progress and can cause muscle cramps and twitches, affecting the ability to walk, hold items, and speak clearly.
How can people manage the symptoms of ALS?
While scientists continue to search for a cure, there are ways that people with ALS can alleviate their symptoms:
Physical Therapy: Exercises that promote range of motion can help people with ALS maintain flexibility and reduce muscle stiffness. A physical therapist can work with each patient to develop an individualized exercise routine that addresses that patient’s needs at their particular stage of the disease.
Medications: Several medications can treat the symptoms of ALS. In Canada, five drugs are currently approved; in the U.S., there are six. People with ALS should talk with their doctor to identify the medication that is the best fit for them.
Adaptive Equipment: Tools can help people with ALS perform daily activities of living, even after they have lost some motor function. There are kitchen tools that help people cook, drink, and eat more easily; there are dressing tools that make it easier to put on clothes or hook a button; and there are voice-activated controls that modulate pieces of household equipment.
How are researchers working to ease the impact of ALS?
There are primarily three areas of focus for the research:
Earlier diagnosis. ALS treatments can be most effective earlier in the disease, so diagnosing patients as soon as possible may improve their outcomes.
Advanced technology to support people with ALS. Creating new adaptive tools can help people with ALS move and communicate more easily. Innovations in brain-computer interfaces show promise for helping people translate brain signals into speech.
Slow the progression. A new medication, approved in 2023 by the FDA, slows the progression of the disease for some patients by targeting a gene mutation.
As researchers search for the cause of ALS, hope can be found in the continued discovery of new drugs and therapies. These advancements will allow doctors to help even more people afflicted with the condition live better lives while researchers continue their work to find a cure.
