Barbara Combs was in ballet class when she found, quite suddenly, that she couldn't extend her leg or point her toe as she had done hundreds of times before. At the age of 54, she was having a stroke. By the time she reached the hospital, she had double vision, couldn't walk or swallow, and felt overwhelmingly weak on her left side. Worse than all those terrifying symptoms, Combs didn't have a clue about what her future would hold.

"Nobody told me anything about stroke, so I had no idea what to expect or what my progress would be," says the former administrator, now 66, who uses a cane to walk.

Combs and others found out the hard way that the medical system offered little to help stroke survivors cope after they left the hospital. "You're by yourself, you don't have a clue how to use the phone, to go to the bank, how to add and subtract. If you want disability benefits, you don't know how to get that," says Combs, recalling her first days at home. "I was so alone," she continues, "I would have talked to anybody."

Determined that no one else should have to feel as isolated as she had, nine years later in 1999, Combs and two other stroke survivors from San Francisco launched a pilot program called Stroke Survivors Starting Over. Combining forces with medical experts on rehabilitation, the group counsels people when they're hospitalized and tries to help them understand the emotional and physical challenges they're facing.

"When people have a stroke they want to tell their story," says cofounder Sharon Brooks. "It's different from telling your doctor, because we have a kind of shorthand with each other."

Geraldine Beasley looks small and meek in her wheelchair as she watches specialists in green smocks parade in and out of her room at the California Pacific Medical Center Davies Campus in San Francisco. But when Combs and Joy Cavenaugh introduce themselves as stroke survivors, Beasley's dark eyes suddenly light up. She studies her visitors and motions them to sit down.

"I haven't been in a hospital since the birth of my youngest, and that's 38 years ago," the 76-year-old Beasley tells the two women. "If my eyes close, I apologize, I'm just so tired."

"I remember how tired I was," says Combs, nodding her head. "It's like pushing a boulder up a hill." Beasley presses them with questions: How long did it take to learn to walk again? When will I be back in shape? Combs urges her to continue her exercises at home.

"I must admit I feel depressed. Suddenly you're here," she says, meaning in a hospital that seems a thousand miles from home.

Cavenaugh tells her that depression is normal, that it comes and goes. After they visit a bit more, Beasley says, "Well, it gives me hope. You're both beautiful women. Believe me, it means a lot."

Tears well up and she wipes them away. "The nurses, of course, help out a lot, but they don't understand how we feel. You're inspiring," she says as the two women leave her room to let her rest. "Thanks again."

Later that week, Michelle Camicia, a clinical manager at the hospital, talks about how much the women's visit meant. "She told her nurse that they saved her life," reports Camicia. "She thought her life was over, and this is the usual response. They see people who are active and have meaningful lives, and that gives them the motivation to carry on."

Combs says her organization has done for stroke survivors what other volunteer groups did for cancer survivors starting decades ago. Part of what motivated her to found Stroke Survivors Starting Over was the memory of a cancer survivor who visited her mother 40 years ago after she had had cancer surgery. That one visit brightened her mother's mood profoundly, she says.

Sponsored by the American Stroke Association's San Francisco Stroke Education Committee, the program includes one caregiver and 11 stroke survivors. They visit four hospitals in San Francisco twice a month. Not all stroke patients wish to talk, and others may be sleeping when the counselors visit. In that case, the volunteers leave their phone numbers and a brochure on strokes.

Stroke Survivors Starting Over teaches peer counselors to listen carefully to patients' problems -- which includes paying attention to nonverbal communication. "Maybe they have no self-esteem, or their voice has no volume. Or they may not be able to say things properly. Or maybe they have nothing to say, but we could sit there with them," Cavenaugh says. Stroke patients also need someone to explain complex medical terminology that their doctors don't have time to spell out.

Experts say stroke patients often slide into depression after a stroke, even if they aren't physically disabled. In fact, about one in four stroke survivors experiences major depression, according to the journal Hospital Medicine. If a depressed patient is suicidal, volunteers alert his or her medical team so the patient can get help from a therapist.

Then again, not all patients are depressed, and some would rather give advice than take it. Karen Chin, a volunteer and a young stroke survivor at 44, found herself being admonished one day by a 70-year-old man who had suffered several strokes. "He went on and on about what I should do to get better. He pointed his finger at me and said, 'Do your exercises! If you need another pep talk, come back,' " Chin says, laughing.

Dr. Scott Rome, the chief physiatrist at California Pacific Medical Center's rehabilitation unit, has seen firsthand how the stroke survivors' visits affect patients. Although the visits may be as little as 10 minutes, the benefits can be far-reaching.

"To meet somebody who's gone through the process before, and see there's light at the end of the tunnel, helps with their progress here and helps them focus their energies on the rehabilitation process," Rome says.

After Patricia Brill experienced a stroke, Barbara Combs went to see her at the hospital. It lifted Brill's spirits at the time, but it wasn't until she went home a month later that she remembered her words.

"I was in the shower sobbing, because I couldn't work with the bar of soap and the washcloth," recalls Brill. Then she remembered a story Combs told her about her first attempt to leave her house. The physical effort it took to put on makeup and dress had left Combs completely exhausted.

"The impression her story made on me was that I'll get better. Things will continue to be hard, but then they'll get easier," says Brill. They did, and Brill is now a volunteer herself.

Although at present volunteers don't visit patients after they've been discharged from the hospital, there are plans to expand the program with follow-up phone calls to patients once they're back home. Combs also hopes to add more volunteers as word of the program spreads. They tell new volunteers that the emotional benefits of the program are not a one-way street.

"This is probably the most rewarding work I've ever done," she says. "You don't always feel like you're making a difference, but more often than not you do."

-- Laurie Udesky is a frequent contributor to Consumer Health Interactive. She has written for Time Inc. Health's Self-Care Advisor, Aids Alert, and TB Monitor.

Further Resources

If you want to start your own group, and would like copies of the Stroke Survivors Starting Over training manual, contact:

Stroke Survivors Starting Over

strokesurvivors@aol.com

References

First published May 23, 2002
Last updated March 10, 2008
Copyright © 2002 Consumer Health Interactive