By MANDO NAVARRO - Staff Writer
© 2005 Chico Enterprise-Record
Monday, June 13, 2005 -

Pavia Wald can hear the music, but she's not dancing.

When the 43-year-old Chico woman with Lou Gehrig's disease dreams, she dreams about dancing, and when she wakes up she wants to move her leg.

But she never will.

Lou Gehrig's disease is the common name for amyotrophic lateral sclerosis. It's a progressive neuromuscular disease that weakens and eventually destroys motor neurons (components of the nervous system that connect the brain with the skeletal muscles), according to an ALS Web site.

In simpler terms: "You're telling your muscles to move, but they wont," Wald said in the lobby of the Chico Holiday Inn. It was a weekend stay with a friend June 5 before she headed to Monterey to live with her father for her what she calls her "final months."

Wald is one of 30,000 Americans with the fatal disease.

Like many victims, Wald can no longer walk. She sits in a black wheelchair. She has lost movement in her right arm, left hand, some breathing muscles and movement in her feet. But once in a while, she said, she can move a toe.

Doctors have given her six months to live, but she said she'll be lucky if she lasts that long.

The disease, which killed her mother and many other members of her family, is slowly taking some of Wald's motor functions away, but her ability to talk and think hasn't been affected.

Her enthusiasm and optimism also are still intact, which is unusual because most people with the disease are constantly depressed and cry frequently.

Wald loves to be outdoors and travel. She still has goals of traveling. She'd like to go to Bali, Indonesia. She was scheduled to go earlier in the year, but couldn't because of blood clots. After hearing that Wald was diagnosed, her friends sent her to the Galapagos Islands.

Wald used to work for the Sierra Club in Chico as a hike leader, primarily to get people more involved with the wilderness. She quit after eight years in 1994 to move to Alaska to become a park ranger. When she was diagnosed she came back to be closer to her family, though it hurt her to have to leave a job that she loved.

Now that Wald will stay with her father for her remaining months, she can't travel too much or visit the outdoors. But after a life of traveling and trying new things - she was a nationally recognized synchronized swimmer at Fresno State and she was an experienced drawer - she can now take advantage of what so many people take for granted in their everyday lives.

In a way, Wald feels like being diagnosed may have helped her realize the values in her life. She remains optimistic about the situation.

"There's a lot of clarity from where I'm sitting," she said. "I've been blessed. I know I'm gonna die in a few months, but that clarifies what's important - friends, family and taking care of the environment we live in.

"The materialistic items in life truly don't matter."

Wald has a Web site that offers details of her condition and the hardship she endures every day.

She has pictures of her smiling while kayaking - before she knew she had the disease and was having the time of her life - and pictures of her in her wheelchair, still smiling.

Though it is too late for her, Wald feels that with more research in stem cell duplication, her sister - who is 40 and has a 50-50 chance of getting the disease - might be saved.

"At this point, I have four or five, maybe six months. I don't know if research and process is going to happen in that time," Wald said. "Technology isn't fast enough to help me, but maybe for my sister."

And in the United States, stem-cell research is a hot topic that has many religious groups and political conservatives fighting it. Their argument is that scientists and doctors are killing "potential life" in the process of trying to improve existing life.

But Wald feels that doctors and scientists can harvest stem cells from places where a lot of cells go unused, like from the umbilical cord tissue.

It's a disadvantage, Wald said, that the United States doesn't take advantage of such a good resource to help people. Other countries are already benefiting from the research.

"In Portugal they've had some success for people who've been paralyzed for 15 years. They're starting to move limbs that they weren't able to move before," she said.

Other countries, as well as Portugal, are using it to save lives, Wald said.

"It's putting our country behind what's going on," she said. "There's doctors who are leaving this country where they can do research on this groundbreaking (technology)."

As for opponents, who say it's wrong to kill "potential life" and to people who are scared that the research could lead to cloning, Wald said: "It just won't happen that way."

Cloning actual people wouldn't be what scientists are interested in, she said. Cloning potentially good tissues - and giving them to people who have bad ones - is the goal.

"Wouldn't it be amazing if we could clone a heart tissue and replace a damaged valve?" she asked. "There's a lot of good potential that could come out of it."

With no more possibility of further research to help Wald, she still receives treatment from clinical doctors in Monterey and San Francisco. Without a cure and with options running out they help her "to manage for comfort," she said.

"Clinics have been great at helping in any way they can, but it's basically trying to slow things down and make things as comfortable as possible in the process," she said. "But nobody has a way to stop it or reverse it."

Her final option is to go to San Francisco Tuesday and "try out" for a clinical trial testing human nerve growth factor, which helps replace nerve and muscle tissue. It has helped others who've had the disease.

"It was very positive for at least slowing it down," she said.

In order to be qualified for the tests, Wald must be selected among many other patients and she must prove that she has at least 31 working muscles to evaluate.

Even if she does qualify, Wald said the chances that the procedure will help her are "50-50."

But no matter what happens, Wald will stay strong and positive.

"I'll continue to do my best, to do as well as possible day to day. "It's getting harder. My breathing is more difficult. As that declines it gets hard to get out and do things," she said.

"There's just so many great things to see and do."

Wald will continue to take lots of antioxidants, multi-vitamins and currently pharmaceutical THC, which will help slow down the glutamate pile up that twitches her muscles.

This week, a friend will visit Wald from Hawaii. She is excited because it's been a while since she's seen this friend. And friendship is what keeps Wald going.

"I could sit here and be miserable every day, but why do that?" Wald said. "We're all going to die. We don't get many opportunities to repair those little things that happen in life and repair old friendships."