Post-stroke survival for Baby Boomers

Support group helps younger patients adjust

When Lee Price was recovering from a stroke in July 1994 at age 46, he felt like an anomaly every time he attended a stroke support group meeting.

"I kept hearing, You’re so young to have a stroke,’" he recalls. "It made me feel I was alone."

Price translated his frustration into action, founding a stroke support group called Young Enthusiastic Stroke Survivors (YESS), with two other stroke survivors (Ann Guenther, who had already experienced two strokes by age 37, and Sue Benson) and the support of Sharp Health Care in San Diego.

YESS has taken off beyond the founders’ wildest dreams. Organizers say the group’s success is proof that these patients have needs other than those addressed by the typical stroke support group.

From the start, the group has been driven by patients, says Clair Jones, MS, Sharp’s system director of rehab services. Its peer-led element is critical to its success, Jones and Price say. Sharp helped start the group with $2,000 in funds from its Rehab Foundation, provided a room for meetings and a few patient names, and let the group’s founders take over.

"At our first meeting, we had four people," Price says. By the next meeting, the group had grown to 10, and by 1997, 180 individuals were participating. As of early 1999, membership totaled 360.

The average age of YESS membership is 36, although there is no strict age limit. "In fact, we have an 82-year-old member who I would classify as a very young 82," Jones says.

YESS originated with monthly meetings at Sharp and now meets twice a month. One meeting each month consists of a social event or outing, while the other focuses on educational topics. Members include but are not limited to former Sharp patients.

Price stresses that the organization has no elected or appointed officers. Members select the topics for discussion through a yearly brainstorming session. A handful of group members get together and use the list from the session to develop an agenda for the year based on member suggestions and what they feasibly can accomplish.

Stroke survivors run group

Among the more popular previous programs include returning to the work force, with tips on dress and appearance and handling relationships, Price says.

Another popular program featured a breakout session among family members and caregivers of the stroke survivors. Often, these people are shy about venting their concerns in front of the stroke survivor; the program enables them to empathize and exchange ideas with others in similar situations.

Two Sharp recreation therapists help secure speakers for the meetings and help plan social events. "As a facility, we try and play as little a role as possible. We want [patients to take charge] based on our philosophy that people need to get back into the community and manage and control their own destiny," Jones says.

The rewards of seeing stroke survivors succeed once they return to the real world has been the primary benefit of the program, Jones says. A secondary benefit has been the increased visibility and recognition for Sharp as a result of publicity for the group; consumers who ordinarily may not have used the Sharp system now consider it an option.

Price says one of the group’s biggest benefits has been to increase self-esteem among its members. The community outings reintroduce stroke survivors to handling social situations. The session on clothing "helps people realize they need to have a little bit of self-pride. Once they’ve had a stroke, some people think, What’s the point of getting dressed up?’

"We give them hope," Price concludes. "There’s always hope. We see people as survivors, not victims."