Copyright 2004 Knight Ridder.
By Jenny Gordon MACON TELEGRAPH STAFF WRITER

Like many couples in the prime of married life, Emily Willeby and her husband Wayne, made ambitious plans for their future.

They were going to rent a house on Tybee Island. She wanted to start a catering business and he was going to work on a shrimp boat and maybe experiment in photography.

"We were as happy as two people could possibly be," said Willeby. "We were planning our future."

Their plans came to a devastating halt when Wayne experienced periodic twitching in his right arm. He dismissed the twitches, thinking it was just a slipped disc or pulled muscle.

Wayne coached his 8-year-old son's midget-league football team at the time. Willeby said she handed him a cup of coffee at a game one day and it went right through his hand to the ground.

"He couldn't grasp the cup," she said. The next day he went to the family doctor.

"It got to the point of being all the time," she said of her husband's twitching, which eventually affected his right hand. "He couldn't grip or even open a jar."

Finally in December of 1987, doctors diagnosed his condition as ALS - amyotrophic lateral sclerosis - also known as Lou Gehrig's Disease. It is a devastating disease that causes its victims to lose the ability to walk, speak and swallow.

At the time of Wayne's diagnosis, the couple had been married for 17 years and had two growing sons. Both Northside High School graduates, they had met at a high school dance. Neither had ever dated anyone else.

By the second week in January, Wayne's condition became worse.

"The fatigue was just so bad that he almost had to crawl in the front door after an 8-hour day," Willeby said. She said she told her husband that he had to stop - that he needed to retire.

After another week and a half, he finally retired from the utilities department with the city of Warner Robins. The city gave him a nice retirement party and city council presented him a plaque.

With Wayne no longer working, the disease slowly claimed his body. It made its way from his right arm to the left arm, later reaching his legs. Months later his ability to swallow weakened, with the disease aggressively attacked his vocal cords.

In time he could barely speak above a whisper.

He went to the hospital in 1991 for a tracheotomy. This would allow a feeding tube to be inserted into his body so that he could receive nourishment.

Emily's husband hasn't spoken a word since the summer of 1991.

"Everybody says he has nine lives," she said softly of her husband, now 57. Lou Gehrig's is a disease that strikes at random, she said.

Despite 18 years of living with this disease, the Willebys celebrated their 35th wedding anniversary this past Feb. 6. Emily rarely leaves her husband, running errands only when a nurse is by his side.

She said her husband "has been a trooper through it all." Still strong, she says he spends many hours on a computer. A special device allows him to control the computer with a click of his eyebrow. She said he taught himself how to type messages on the computer.

"Now he can talk to anyone," she said.