[ MAUKA-MAKAI ]
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A few months ago, Morris Nakamura could lift his arms high enough to put his favorite baseball cap on his head without people noticing. He can still handle the black cap by himself but the weakening muscles in his arms force his elbows to bend when he lifts his arms. And strangers gawk. Having disability
without being disabledBy Suzanne Tswei
stswei@starbulletin.com
"It's hard when people look at you. They think, 'What's wrong with you?'" Morris said, lifting his arms in childlike movements to demonstrate how he accomplishes the simple task.
He'd like to avoid curious gazes but the cap is as much a necessity as his electric wheelchair. His frail arms have turned brushing his hair into a major chore, and wearing a cap to hide his messy hair is a more workable alternative.
"This is what muscular dystrophy does to you. Even simple things you can't do. People don't really understand that, but my brothers, they know. We are all in the same boat."
Younger brother Glenn, and older brother Michael, a former Honolulu Police Department chief, both have inherited the condition that disabled their father, Stanley, better known as "Slim." Although their father was never officially diagnosed with the ailment (doctors thought he had Lou Gehrig's Disease, which has similar symptoms), the brothers suspect he had the same adult-onset Spinal Muscular Atrophy, one of 40-plus types of muscular dystrophy, that also is slowly killing them.
There is no cure for muscular dystrophy, which causes atrophy beginning with the major, larger muscles in the arms and legs, before spreading to smaller and internal muscles that control organ functions. Eventually, breathing becomes difficult as the lungs weaken. Or some other life-sustaining function will fail.
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The Nakamura brothers are unusual because they all inherited the condition. In most families, a higher percentage of siblings may be spared. (The Nakamuras have a younger sister who does not appear to be affected.)"My brothers do more than understand. They are either going through what I am going through, have gone through what I've been through or they are going to go through it," Morris said.
Michael, 54, with similar degrees of physical limitation, wears a straw cowboy hat as he zips across town in his electric motor scooter to serve on the boards of nonprofit agencies. He also is an elected member of the Board of Education and a City Council candidate.
Glenn, 47, buyer for Grocery Outlet, is the most mobile. He can walk on his own although his walk is more of a waddle as his body tries to adjust to the progressive atrophy of the muscles. Both of his older brothers require help with daily routines, such as getting out of bed, bathing and using the toilet.
The older brothers kid Glenn about getting him a hat. And Glenn, the only one to inherit his father's receding hairline, kids back that he's going to shave his head.
Despite their disability, the Nakamuras said they are blessed with a close-knit family, supportive spouses and children, and their father's affable disposition. The two older brothers are upbeat and give easy to laughter, while the youngest describes himself "a hard head" who's learned to temper his emotions.
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The brothers have known about their condition since the late 1980s when Morris was first diagnosed. There are private moments of anguish but the brothers said with each other's support, they've learned to face the disease."Watching what they've been through, and what my father went through. The frustrations, how they can't take anything for granted. It's helped me a lot," Glenn said.
The brothers adjust to each deterioration, sharing information and comforting to each other. They worry about succeeding generations, although their children so far seem to be free of the genetic flaw. Each also has found his own way to cope.
Morris, a former carpenter, as was his father, has taken up painting, although he has difficulty opening paint tubes and squeezing paint out of the tubes. When his arms and fingers give out, he plans to paint by holding the brush in his mouth.
Morris has completed a painting especially for the Muscular Dystrophy Association Soiree 2002 on April 5, an evening of silent auction, food and entertainment to raise money for the non-profit agency.
The painting, based on the fund-raiser's theme of "Picturing a World Without Muscular Dystrophy," depicts two contrasting landscapes. On one side, a colorful world filled with flowers but kept out of reach beyond a barbed-wire fence. On the other, a drab world with a broken wheel chair. The painting, the cover for the evening's program, will be included among the auction items.
Glenn is fortunate to have an employer who encourages him to stay on the job indefinitely. He plans on working -- enlisting perhaps his wife who also works at the grocery store to help him work his computer when his hands become too weak. In the meantime, he's become a devoted Christian who finds solace in his daily prayers.
Michael stays busy by volunteering. Besides serving on various boards, he wheels around Downtown Honolulu every Monday passing out roses to friends and strangers. He stays healthy by watching his weight and taking herbal remedies.
"I think part of my job is to stick around as long as I can. If I am here, that means the doctors and researchers can get more information about muscular dystrophy. That's going to help them find a cure - not in my life time, maybe not in my children's life time, but maybe the next generation can benefit."
Theme: "Picturing a World Without Muscular Dystrophy" Muscular Dystrophy
Association Soiree 2002
Place: Monarch Ballroom and Ocean Lawn at the Royal Hawaiian Hotel
Time: 6 to 11 p.m. April 5
Cost: $100 per person
Call: 548-0588
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