Glen Campbell serenades Congress at Alzheimer's event

WASHINGTON�Ashley Campbell has the dream of any young musician: to belong to a band making a worldwide tour. Yet her dream has a sad twang to it. Her father is singer Glen Campbell, who went public last June with his diagnosis of Alzheimer's disease.

Campbell, 75, has spent the past year trying to raise awareness about the disease, an incurable, brain-wasting illness that affects 5.4 million people in the USA. That number is expected to triple as the Baby Boomers age.

Ashley Campbell, 25, and two of her siblings have joined their dad onstage as his backup band during his Goodbye Tour. The band was back together here Wednesday night at the Library of Congress for a special performance for members of Congress, put on by the Alzheimer's Association to raise awareness about the disease.

"I think music is therapeutic for him," says Ashley, who plays banjo in the band. "He's definitely sharper when he's on tour than if he's sitting home or playing golf. That's when I see him slipping. But if he can put that guitar in his hands and use his fingers to pick music, he's much better.

"Sometimes he'll get confused when he's singing and might forget some lyrics, but that's when the teleprompter helps him out. And he's not the only musician to use one of those. Not by far."

Ashley says her dad loves the crowds at the concerts � and the feeling seems to be mutual.

"The first night of the tour, I couldn't get over it," she says. "He got the rowdiest standing ovation when he came onstage. People were so supportive of him. I thought maybe it was just because it was the first night.

"Until the next night, when it happened again. And the next night, and the next night."

She says that at a concert before they came to Washington, her dad started singing Rhinestone Cowboy, and a man approached the stage from the crowd.

"He shouted, 'You are a hero, Glen. You are a hero, man.' "

Ashley says music was always part of their household when she was growing up. She played piano and guitar until she got to college. Then she discovered the banjo and bluegrass music.

"Banjo is my instrument now," she says. "When I would play at home, my dad would stand up and say, 'Well, look at you. You're really good on that. You are fantastic.' "

He asks her to invite her friends over, and they play bluegrass music together.

Before the Library of Congress performance, she talked about how important it is for her father to keep doing what he enjoys and to help spread the word about the need to find a cure for Alzheimer's.

"People like Glen Campbell and (basketball coach) Pat Summitt, who are using their voices to advocate for the disease, know it's not going to help them," but it may help others, says Angela Geiger, chief strategy officer for the Alzhiemer's Association. "That takes a special kind of courage."

The sound of courage Wednesday night rocked a jammed auditorium that holds several hundred.

The audience stood and cheered when Campbell came out onstage.

"Thank you," he responded. "I appreciate all of you."

Then he broke into one of his famous songs, Gentle on My Mind, and sang about the "rivers of my mind."

A guitar lick he hit to perfection sent the audience into loud applause again.

"It's important for people to know you can keep doing what you want, that life doesn't end right away when you get Alzheimer's," Ashley says.

Backstage, the adulation continued as Campbell signed autographs.

The Goodbye Tour continues through July.

TEPR's advocacy for online resources includes a story of survival

PALM SPRINGS, CA – The effort to develop social networking tools for healthcare took a personal turn at this week's TEPR+ conference in Palm Springs, Calif.

During Monday's opening session of the Medical Records Institute's Towards the Electronic Patient Record (TEPR+) conference, attendees were introduced to Dave deBronkart, a Nashua, N.H. businessman who recently survived renal cell cancer - and who attributes his victory in part to being an ardent Web surfer.

deBronkart was diagnosed in 2007, at age 57, when a tumor was spotted in his lung during a routine shoulder X-ray. The cancer was later found to have spread from his kidneys to his lungs and other parts of his body. In researching his condition online, he said, he learned that he had about 24 weeks to live.

deBronkart's physician, Danny Sands, MD, of Brigham and Women's Hospital in Boston, had earlier directed deBronkart to the hospital's PatientSite interactive Web site, seeing it as a means of keeping in touch with his patient when  he wasn't in the office (and when deBronkart moved to Minnesota for a few years). Following the cancer diagnosis, Sands connected deBronkart with acor.org - an online network organized by the Association of Cancer Online Resources.

"I lurked for two or three days, listening to what other people were saying, before deciding to post a message," deBronkart said. Within hours of his first posting, he said, he was in touch with other cancer patients, sharing advice and resources.

"I needed to know what my options were," he said.

deBronkart learned of a risky treatment for renal cell cancer using Interleukin-2. He also learned that the side effects to the intravenous treatment were "often severe and rarely fatal." Within days of posting a request for information on acor.org, he said, he received 15 firsthand accounts.

During his treatment in Boston, deBronkart kept friends and family notified of his progress through a page on CaringBridge, an online portal for those undergoing medical treatment. He posted notes, photos and traded messages.

This past year, deBronkart learned that one of the five tumors in his body had vanished and the other four are shrinking. He has begun a blog ("e-Patient Dave"), extolling the virtues of the active, Web-educated healthcare consumer, and will do something this summer that he didn't think he'd live to do - walk his daughter down the aisle at her wedding.