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'Walk to Defeat ALS' helps those living with the neurodegenerative disease in Hawaiʻi

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Amyotrophic lateral sclerosis, or ALS, is a progressive neurodegenerative disease affecting thousands across the U.S. — and hundreds here in Hawaiʻi. You may have heard it referred to as Lou Gehrig’s Disease.

The Golden West Chapter of the ALS Association provides services to those living with the disease in our state, and their caretakers. To raise the money needed to fund those services, the chapter is holding its “Walk to Defeat ALS” this Saturday.

The Conversation sat down with chapter President and CEO Fred Fisher to better understand the disease.

"Most people, it's a two to five-year journey with the disease, over which time they lose the ability to speak, to swallow, to move, and to breathe because all the muscles that are required to do those things are voluntary. And as motor neurons die, people lose the ability to use those muscles, so it's a really devastating diagnosis," Fisher said.

ALS can be difficult to diagnose because it cannot be detected with a blood test, he said.

"It's what's known as a rule-out diagnosis. So a neurologist will try to find some other explanation for the symptoms that they're seeing — and when there are no other reasonable answers, the diagnosis is ALS," Fisher told The Conversation.

Fisher said there are more clinical research trials for ALS going on right now than ever before. However, research clinics are on the continental U.S.

"One of our goals for Hawaiʻi is to establish a research clinic so that when there are clinical trials, those trials can come to Hawaiʻi," Fisher said. "Right now, if a person wants to participate in a clinical trial, they have to fly to a clinic on the mainland. And that obviously comes with severe economic and transportation challenges for someone dealing with ALS."

This interview aired on The Conversation on Oct. 20, 2021

Russell Subiono is the executive producer of The Conversation and host of HPR's This Is Our Hawaiʻi podcast. Born in Honolulu and raised on Hawaiʻi Island, he’s spent the last decade working in local film, television and radio. Contact him at talkback@hawaiipublicradio.org.
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