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StarBulletin.com

'I do what I can. I just don't give up'


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POSTED: Tuesday, May 12, 2009

Chester Kahapea still flashes the vibrant smile immortalized in the photo of the Star-Bulletin newsboy selling a paper declaring Hawaii's statehood.

But one day, he won't even be able to move his mouth as he loses complete control of his body due to ALS, also known as Lou Gehrig's disease.

“;He was the face of statehood. Now he's the face of ALS (amyotrophic lateral sclerosis),”; said Jennifer Li, health care services coordinator of the Muscular Dystrophy Association. The Associated Press photo that circulated worldwide splashed the image of Kahapea holding up the Star-Bulletin's March 12, 1959, issue declaring, “;STATEHOOD!”;

“;He always has this smile on his face; for everyone he has a funny joke to tell, but he is hurting. ALS robs people of their independence. It takes away their life one muscle at a time,”; Li said.

Since he was diagnosed a year ago, Kahapea has been a spokesman and volunteer at MDA, which is sponsoring its Ninth Annual ALS Seminar Saturday to provide support and education about the disease, which has no cure.

Li said people, either victims or caregivers, are always so grateful to talk with Kahapea because “;it's not often we have people to talk so honestly and openly about it.”;

Kahapea always tells people, “;Jennifer is my angel”; because of her encouragement and patience, which he appreciates because it takes him a long time to accomplish the simplest tasks at the MDA office.

“;It's hard to do the simplest things, like opening a candy bar wrapper. My fingers get stuck, paralyzed; I don't have the grip. Mentally you get frustrated,”; he said, adding, “;I lose track of what I'm doing or where I should be.”;

As a former self-employed construction inspector, Kahapea is used to getting things done promptly, but now he gives himself a three-hour head start to get somewhere. Most of the time Kahapea uses a walker, loaned by MDA, even though he has a mechanized wheelchair.

“;I use it (the wheelchair) only in the house because I don't want to count on machines. ... If I can move, I'm going to move. You don't stop, if your body can (still do it). I've seen people worse off than me, but I'm not going to hurry to be there or give my body a reason to give up. I do what I can. I just don't give up,”; he said, his voice breaking. “;It's hard; it's really hard.”;

“;I've seen people who can't even feed themselves. Pretty soon that will be me,”; he added. “;And there's nothing I can do about it ... but I refuse to give up.”;

               

     

 

Annual seminar

        » What: Ninth Annual ALS Seminar (ALS is amyotrophic lateral sclerosis, or Lou Gehrig's disease)
       

» When: Saturday, 9 a.m. to 12 noon

       

» Where: Queen's Conference Center, 510 Beretania St.

       

» Why: Sharing local resources for families, caregivers

       

» Speakers: Keynote—Mike Shannon, ALS Western regional director; Kimi Chun (daughter-in-law of the late artist Peggy Chun) will share caregiving resources and different care options.

       

» Registration: Free. Call 593-4454.

       

» Sponsor: Muscular Dystrophy Association