When every hand counts

Volunteers help ALS patient Adriana Pitt with the tasks she can no longer do.

By BLYTHE BERNHARD
The Orange County Register

HUNTINGTON BEACH – Adriana Pitt reorganized her craft room three years ago to make way for a hospital bed and medical equipment. She painted a quote on the wall in her best handwriting: "The truest measure of a life is not its length, but the fullness in which it is lived."

Pitt, 52, was diagnosed with amyotrophic lateral sclerosis, or Lou Gehrig's disease, in 2001. She can no longer walk, talk or work on her beloved scrapbooks. She spends her days in bed in the downstairs craft room, overseeing two volunteers who are finishing the photo albums.

"I feel I need to leave a history for my kids. ... Their helping me organize is such a relief for me," Pitt said by typing onto a computer. "It has brought them into my world."

Volunteers Teresa Garcia and Brenda Waterman, both 22, see photos of Pitt on her wedding day. She is beaming at her first husband, Jerry. The birth of a daughter, then a son. The grieving widow, who lost her husband to cancer at 26. Birthdays, holidays, vacations and a second wedding.

Garcia and Waterman volunteer through Extra Hands for ALS, a national group that pairs high school and college students with ALS patients to provide companionship and help around the house. There are 150 known patients with ALS in Orange County and 30 volunteers placed with families.

ALS attacks nerve cells and gradually robs patients of their voluntary muscle control. First patients lose their mobility. Then their voices. And finally, their breathing. But they never lose their mental capacity. Most patients die, usually of respiratory failure, within three to five years of diagnosis.

"ALS is devastating," her husband, Jack Pitt, said. "Her mind is sharp as ever, but I see a person that's a prisoner in their own body."

Fresh flowers fill Pitt's room. The onetime florist had to sell her Seal Beach shop when the disease progressed. The couple had been looking forward to a stress-free retirement, but the volunteers offer the family a measure of peace, Jack Pitt said.

Garcia and Waterman visit Pitt for two hours each Thursday to walk the dogs, take out the garbage and sweep the floors. But mostly, as girls will do, they talk and giggle.

"We talk a lot about life and what they are up to. We have bonded," Pitt typed.

The young women, both UC Irvine students, love to joke with Pitt. One day, they say, they're going to spike her feeding tube with margaritas. They tease her about her poor spelling and scoff at her disease. When Pitt laughs, she throws her head back and lets out a high-pitched gasp.

"Sometimes I forget that we're not orally communicating," Garcia said. "I forget about that stupid machine that's helping her breathe."

The students have been helping Pitt for a year and move comfortably through the house, skimming the backyard pool or watering the flowers out front. They always end up at the foot of Pitt's bed to chat. It's not bittersweet to watch the vibrant girls with their lives ahead of them, Pitt said.

"It's just so wonderful to be around them. They are so full of life! Keeps me young at heart," she typed.

Although she knows it's coming, Garcia said she isn't afraid of her friend's death. She sees how Pitt is loved by her children, friends and husband. Garcia has learned from Pitt to live simply, and she wants to work in hospice care.

A mentor provided by Extra Hands helps the volunteers and the patients' families with their questions and grief - not that Pitt plans to go anytime soon.

"I am too nosy and want to see everything that goes on!" she typed, and smiled.

Pitt said she has no regrets about her life. While she gets frustrated with the disease, she would rather "cope than be miserable." Still, if she could have her body back for just one day, she would be a professional dancer on Broadway.

"I just love music and moving to it," she typed.