Copyright 2005 Lakeland Ledger Publishing Corporation
The Ledger (Lakeland, FL)
October 21, 2005, Friday
SECTION: Life; Pg. D1
LENGTH: 1081 words
HEADLINE: LIVING, LOVING, PUSHING ON; ALS MAY STEAL HIS FUTURE, BUT NOT HIS HAPPINESS.
BYLINE: GARY WHITE The Ledger

As he entered the year 2001, James Hutton had every reason to be happy.

He was newly and blissfully married. He shared a custom-built house in North Lakeland with his wife, Jerolyn. He relished his job as an information systems planner for Publix Super Markets.

And then, in the spring of 2001, Hutton noticed an odd twitching in the muscles of his right forearm. A few months later -- just short of his first anniversary -- he was diagnosed with amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig's disease. ALS, a progressive neuron disorder, causes a steady degeneration of physical functions and usually results in death within five years of a diagnosis. There is no known cure.

Hutton, 46, now has little control over his body. He can no longer eat or use a bathroom by himself, and he requires constant care. He relies on a powered wheelchair to get around and uses a ventilation machine to help him breathe at night. Even using a computer is difficult for the technological wizard.

It seems Hutton has every reason to despair. Yet his wife says he doesn't.

"He kind of puts us to shame," Jerolyn Hutton says. "He's the one with the disease, but he has a better attitude than the rest of us. If it had been any other person to go through this, I couldn't have done it, but James has such an extraordinary attitude. He's never unhappy."

Despite his declining condition, James continues to promote awareness of ALS. He serves as captain for a team called Mission Possible that planned to take part in a "Walk to D'Feet ALS" fundraiser in Tampa. The team includes relatives, friends and former colleagues at Publix, from which Hutton retired in 2002.

Concerns about Hurricane Wilma prompted the ALS Association's Florida chapter to cancel the event, which was scheduled for Saturday. The chapter instead is holding a "virtual walk" through its Web site, www.als-florida.org.

The ALS Association's Florida chapter holds walks throughout the state each year, and part of the money raised at each event goes toward care for patients in the area.

"It's my message to get out awareness about this disease," Hutton says, sitting in a specially designed recliner in his living room. "Instead of getting depressed about it, I try to keep active."

Hutton's throat muscles have weakened in recent months, and he speaks slowly in a raspy voice. But he keeps in touch with friends through e-mail, sending out periodic updates on his condition.

Though he only has use of one finger, a computer program allows him to type by clicking an onscreen keyboard. When he's not on the computer, Hutton listens to books on compact disc or watches movies.

Jerolyn Hutton, a support team leader for Publix, cares for her husband with plenty of help from her parents, Jerry and Melba Wheeler, and Robert Hutton, James' grown son from a previous marriage. The ALS Association pays for a home health aide to provide respite care one day a week, and Good Shepherd Hospice also provides a nurse once a week.

The ALS Association estimates the cost to families of patients at $ 200,000 a year. Rilutek, the only drug proven to extend the lives of ALS patients, costs $ 1,000 a month and isn't covered by Hutton's insurance. In addition to Rilutek, he takes pain medication to lessen the effects of muscle spasms caused by the disease and receives physical therapy twice a week.

"As for depression, why dwell on something and look at the bad?" says Hutton, holding his blue-eyed gaze on a visitor. "I look at the good. I figure I got a free vacation out of it."

Hutton's emphasis on positivity doesn't mean he's in denial about his fate. Though his doctors avoid making any predictions about his life span, he understands his time is short.

Hutton and his wife have made arrangements with a funeral home for his memorial service and cremation. He compiled a collection of favorite songs to be played at the service, including The Beatles' "Yellow Submarine," Lionel Richie's "Hello" and "Goodbye" and Queen's "Who Wants to Live Forever?"

Hutton also has made clear he doesn't want his life prolonged by excessive and artificial means. A government-approved "do not resuscitate" order is posted on the couple's refrigerator, and Jerolyn carries a copy in her purse.

"We've talked about death and dying, and he's not afraid," Jerolyn Hutton says. "He's made peace with it. ... He's always had a very strong faith, so I think that has helped him."

Jerolyn Hutton, 37, had hoped to bear children with James, who has four offspring from a previous marriage. In lieu of children, the couple adopted Wicket, a Bichon Frise named after a Star Wars character.

Jerolyn met her husband when they were both working in the information systems department at Publix. His penchant for humor and his cheery outlook attracted her, and they shared an affection for science fiction and fantasy literature.

Jerolyn gives the impression her husband is better prepared for his own death than she is.

"It's very sad, because I barely had enough time; we've only known each other for seven years," Jerolyn says. "This is the person I wanted to spend the rest of my life with. We have so much in common and enjoy each other's company so much."

Though the couple has carefully planned for James' death, some details remain beyond their control. Jerolyn hopes her husband will expire with family members surrounding him, and she fears she will wake one morning to find he has died without her knowing it.

The Huttons have prepared for the loss of James' vocal capacity by acquiring a Dynavox, a machine that electronically simulates speech. James will be able to conjure words through a touch screen or, if he becomes unable to use his hands at all, through sensors he can work by blinking.

He has recorded words and phrases in his own voice to be reproduced by the machine.

"It's very important because if he can't communicate with us, he can't tell us he's in pain or even, 'I have to go to the bathroom,"' Jerolyn Hutton says.

The machine also ensures that even after James Hutton's throat gives out, he'll be able to tell his wife, "I love you."