May is ALS awareness and families appreciation month

LIHUE — Sean Ornellas was deliberate in testing his legs on the steps leading to the raised stage of the atrium at the Moikeha Building Thursday.

The process left him in the back of the delegation, including Mayor Bernard Carvalho,Jr., Natalie Fonda, Kahala Howser, both of Honolulu, and Joanne “Cookie” Fujio, who had already reached the large wooden County of Kauai logo positioned at the back of the stage.

“Sometimes, I have to figure things out,” Ornellas said as Carvalho retreated to help him. “On some days, my legs have no strength and I need to see where my strength is.”

Ornellas is afflicted with Amyotrophic Lateral Sclerosis, more commonly known as Lou Gehrig’s disease. ALS is a progressive fatal disease that attacks nerve cells in the brain and spinal cord, making even the simplest movements like walking, breathing, speaking, eating, and gesturing become eventually impossible.

“One thing about ALS is your life span is not long,” said Fujio. “We have about six people, including Sean, living here on Kauai with ALS. My husband, Gary ‘Black’ Miyashiro, had ALS. He could walk, but what killed him was he couldn’t breathe. He used to communicate using an iPad because it affected his speech. Eventually, he died from being unable to breathe.”

ALS has no known cause, means of prevention, or cure, states a mayoral proclamation announcing May as ALS awareness and ALS families appreciation month which was presented to the ALS delegation from Oahu by Carvalho.

Fonda, of the ALS ‘Ohana, said military veterans are twice as likely to develop ALS as those who have not served in the military, although there is no explanation. In Hawaii, there are about 25 cases of ALS diagnosed each year, and there are about 100 people afflicted with ALS at any one time.

“I have been living with ALS for six years,” Ornellas said. “My mother, brother, and cousin had ALS, and I’m one of a small percentage of have it because of heredity. I started showing the same symptoms as my mother, but went into denial. I only went to the doctor after my legs gave out on me — twice in one night.”

Carvalho, who became personally involved with ALS awareness after meeting Miyashiro, said “our island communities need to recognize ALS and its physical effects in order for those currently affected, and those whose futures are overshadowed by the specter of ALS, to receive the understanding, legislative action, and support they need.”

The mayor said ALS patients and their families on Kauai have demonstrated extraordinary resilience, resourcefulness, and dignity. He said the island community is grateful for the vision and groundwork laid out by families of those afflicted with ALS, the ALS Association Golden West Chapter, and Hawaii ALS.

National and local ALS-related organizations in Hawaii such as Hawaii ALS are coordinating efforts to provide care to ALS families, including advocating for more funding on research, service and public awareness, Fonda said.

“We have our moments,” Ornellas said. “It all depends on our strength. I try to keep busy (such as attending events like proclamations). The key is to think positive.”

The proclamation was issued in memory of Kauai people — Joanne Zeddrick, Evelyn Boisier, Miyashiro, Everette Hullum, Janet Farineau, Terry Capuy, Peter Soares, Mel Montgomery, Valerie Texeira, Ricardo Accorsi, Lloyd Maeda, and Clarence “Bully” Naka‘ahiki.


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