By Lisa O'Donnell
JOURNAL REPORTER
© 2004 Winston-Salem Journal
Sunday, August 29, 2004

CLEMMONS - Nancy Rea told her husband, David, a long time ago that she would leave this earth when she was ready.

Despite living with an incurable disease that has left her unable to walk or speak clearly, she clings to that vow.

Rea, 48, has amyotrophic lateral sclerosis, commonly known as Lou Gehrig's disease. About half of the people with ALS die within three to five years after the onset of the disease.

ALS is a neurodegenerative disease that attacks nerve cells in the brain and spinal cord. The disease is marked by progressive muscle weakness. People with ALS lose the ability to move their limbs, talk and swallow. Eventually, they become paralyzed. Their minds remain unaffected.

Rea, the mother of four children, learned she had the disease in the summer of 1992. She was 36.

She was determined to watch her children grow up. Now that Sarah, 24, Alissa, 22, Mary, 19 and Thomas, 16, have reached or are nearing adulthood, Rea wants to live to see her grandchildren grow up.

"You guys thought you were going to get rid of me," she joked to her husband.

Three years ago, the Journal wrote about Rea and the incredible network of friends and family who came together to support ALS research on her behalf.

That circle of supporters, led by such longtime friends as Susie Marion and Karen Dalton, helped organize a team - the "Reas of Sunshine, Reas of Hope" - to participate in the local "Walk to D'Feet ALS."

The ALS Association sponsors about 140 of these fund-raising walks throughout the country.

Since 2001, the number of team members has swelled to more than 300. David Rea estimates that the team has raised about $65,000 has for ALS research from the walks.

This year's walk will be Sept. 11 at Ernie Shore Field. And once more, Rea's friends are hoping to add to the brigade.

Marion, the team captain, said the walk gives Rea's friends a chance to repay her for her friendship. Rea, who lost the ability to project her voice and form distinctive words about five years ago, remains Marion's most trusted friend and confidante.

"She's the one I go to with all my issues," Marion said. "Her wisdom is unbelievable."

Dalton agrees.

"It's always the right advice," she said.

Rea, whose trademark wit remains as sharp as ever, didn't miss a beat.

"Some people are just real needy," she said.

Rea has attended each of the walks. The outpouring of support from friends and strangers, all dressed in team T-shirts, can be emotionally overwhelming for her. Many of the people with ALS that she has met at past races have died.

"It's not easy to go out and see all those people, and notice some of them are not back," Rea said.

"It's a tough day," David Rea said. "But a good day."

As in previous years, this year's walkers will include members from the boys and girls soccer teams at Forsyth Country Day School.

Thomas is a defender for the Furies. Alissa and Mary Rea each played for the school.

Rea goes to all of her son's home games and tries to attend as many of the girls games as possible even though her daughters have graduated.

A few years ago, the school named its stadium Nancy K. Rea Stadium as a way to honor her longtime support.

"I don't think I've done anything to warrant the honor, but I'm very proud of it," she said. "Now, I want a swimming pool."

Alissa Rea said she surges with pride whenever she watches her brother play at the stadium. She hopes one day that her children can play on a field named for her mother.

"It's one of those things that, if for some reason she isn't around to know them, that it would be a great thing to be able to explain to them how she was and to take them to the field and let them play," she said. "Of course, I hope she's sitting there watching."

When the Journal wrote about Rea three years ago, she was in a wheelchair and was barely able to move except to turn her head. Her health has deteriorated only slightly since then. She has more difficulty breathing and often has to gulp for air between sentences. Rea is fed through a tube (though she does suck on dark chocolate) and has lost some muscle mass. "Women would envy my thighs," Rea said.

"On the other hand," David Rea said, "her computer skills have gotten a lot better."

Rea spends hours each day e-mailing friends on a computer that she controls with head movements. E-mails are the best way to communicate with friends, and they are the only way she can communicate with her children when they are in college. A two-paragraph e-mail may take two hours to complete.

Her husband is her main interpreter. When the kids do something she doesn't like, David Rea often has to relay her displeasure.

"Sometimes I don't interpret it word-for-word," David Rea said. "Sometimes, I soften it."

"Mom's (speeches) have more of a kick to them," Thomas Rea said.

Rea's friends remain devoted to her and her family. Don and Marlene Norwood have brought food by the house every third Tuesday for the last 10 years; Drewry Nostitz brings fresh-cut flowers from her garden about every three weeks; a women's group at Clemmons United Methodist Church tends flowers planted in urns that the Reas bought for the church in appreciation of their support.

Rea is among the 10 percent of people with ALS who have lived 10 years or longer.

Her friends and family attribute her longevity to a fierce stubborn streak.

"She's about the most stubborn person you'll ever meet," David Rea said.

In the scramble for research money, ALS often comes up short.

"What I always say is that the good news is that only 30,000 people have ALS," David Rea said. "The bad news is that only 30,000 people have ALS, and you don't get that funding."

"And they die," Rea said. "And their voices are gone."