LIHUE — Nothing happens without families, said Fred Fisher, president and Chief Executive Officer of the ALS Association, Golden West Chapter, Monday. “What happens here is families care, and hurt enough to do something,” Fisher said. The result was the
LIHUE — Nothing happens without families, said Fred Fisher, president and Chief Executive Officer of the ALS Association, Golden West Chapter, Monday.
“What happens here is families care, and hurt enough to do something,” Fisher said.
The result was the first Amyotrophic lateral sclerosis, or more commonly known as Lou Gehrig’s disease, walk in September, 2013 on Oahu.
“The walk raised $70,000,” Fisher said. “The ALS Association, Golden West Chapter has committed to spend that money to help build something strong for Hawaii ALS patients and their families.”
One of the direct benefits of Fisher’s statement was the appearance of Terryn Davis, who was helping Peter Soares during the meeting in Mayor Bernard Carvalho Jr.’s office.
Starting in February, Davis provides expert support, resources and information to a growing number of Hawaiians living with ALS on all of the islands in Hawaii.
Kauai has not been exempt in this growth.
Last year, Nohea Nakaahiki, walk organizer, accompanied Gary Miyashiro and Joanne Fujio in the visit to Carvalho, seeking help to get the inaugural walk off the ground.
This year, Miyashiro, who “speaks” with the aid of a digital tablet due to the degeneration, was joined by Soares, the former grounds lead at the New Kapaa Town Park facility, and Lori Capuy, whose dad Terry was recently diagnosed with ALS.
Soares’ wife Nama, a clerk at a Kapaa supermarket, said Peter’s initial symptoms were innocent.
“He used to drag his feet,” Nama said. “He kept going to work, and nothing was wrong until he went to the doctor in April.”
Following several visits to different doctors, Peter was finally diagnosed with ALS, or Lou Gehrig’s disease, in July, 2013.
“This was the toughest day of our lives,” Nama said. “I never cried so much. Peter is so tough. He never complains, but I know how much he is suffering. He is a fighter.”
Nama said she feels blessed that their son recently graduated high school and is in college on a scholarship.
“We still have a daughter in high school,” Nama said. “Right now, our goal is just to see her graduate high school. After that, we’ll set another goal.”
It was through her job at the supermarket she met Lois, Terry Capuy’s wife.
“It is really hard to connect with people,” Nama said. “There are all the medical and privacy laws. You cannot walk up to someone and ask, ‘Eh, you get (blah, blah, blah)?’”
But they met, and now, they are bonded through their respective fight against the neurodegenerating disease.
Lori said her father’s symptoms included slurred speech.
“You could understand him if he spoke in short sentences,” Lori said. “But if he was engaged in lengthy conversations, his speech would slur to where you couldn’t understand what he was saying.”
The slurring was compounded with him dragging his feet, and in January, Terry was diagnosed with ALS.
“It’s so sad,” Lori said. “He was an auto mechanic, and now, he can’t even work with his tools.”
Nama said in the course of living, they got to meet yet another person through a beauty shop.
“It’s good to have things out in the open,” Joanne Fujio, Miyashiro’s wife, said. “After the newspaper told our story during the meeting with the mayor, the phone started ringing and people came forward to help. They offered help to where Gary was the top fundraiser at last year’s walk.”
Fujio said up until that point, people would keep their thoughts to themselves, speculating on Miyashiro’s illness.
Davis said these are the cases we know of. How many more are out there that we don’t know of?
