Kansan Shirley Rose launched a foundation to aid stroke patients.
Kolleen Arnold, 37, said that after her stroke six years ago, she “didn’t want to leave rehab” because she didn’t want to be a burden to her husband at home in Overland Park, Kan.
Because he was single with no support at home, Pete Highman, 42, moved in with his brother’s family after suffering two severe strokes five years ago. He wished he had found another alternative.
“If I’d had another place to go on a long-term basis, I wouldn’t have been a burden on my brother and his family,” said Highman, whose rigorous self-discipline has resulted in near total recovery.
Community and civic leader Shirley Rose of Overland Park, who established the American Stroke Foundation 18 months ago, has a dream that she hopes will be answered for Arnold, Highman and thousands of other stroke survivors in the Kansas City area. Through the foundation, she wants to buy a home where stroke patients can perfect the art of daily living — from gardening to getting out of bed alone — free of charge.
“After leaving the hospital, stroke patients go into therapy and are surrounded by therapists and equipment to assist them,” Rose said. “But when they leave that and go home, the needs are overwhelming. We want to address that. We want to find a place in a residential area — a warm, home setting — where stroke survivors can practice cooking, getting out of bed, gardening, maintenance, anything they would normally do at home.
“It would be a place where survivors could assist other survivors by sharing mutual needs and concerns. There is no one who understands better the needs of a survivor than another survivor. The home would be a resource center for help, hope and mutual understanding. There is a tendency to ignore the mind and soul of a stroke patient. There is a big difference in treating patients in general and in treating stroke survivors.”
Rose, 77, speaks from experience. In August 1995, her husband, Stan, co-founder with her of Sun Publications Inc., suffered stroke symptoms that continued intermittently until his death at age 78 in January 1997.
“I had financial, family, community and doctor support,” Shirley Rose said. “But even with that, the challenges (of coping) were overwhelming. For those who don’t have all those means of support, the situation is simply awesome.”
With the help of her daughter, Robbie Small, and a cousin, Rochelle Kanter, Rose established the American Stroke Foundation “to address life after stroke.” Based in Overland Park, the office is run basically by volunteers who are stroke survivors. It is a communications center for stroke patients and their families. Its primary function, stated in writing, is to assist “the more than 7,500 stroke survivors in the Kansas City metropolitan area who need support to move beyond where the health-care system leaves off. (Survivors) need help with day-to-day living, therapy to mend their minds and bodies and confidence that their lives still have meaning and purpose.”
Rose emphasized that the foundation “does not duplicate existing treatment, prevention, education and research services but rather complements them by providing the missing link in the nurturing of stroke survivors and those who care for them.”
The missing link will be complete when the foundation finds a home, say Rose and her volunteer colleagues. It would serve as a model to be reproduced in cities across the country to assist stroke survivors.
“We’ve had two possibilities — one would have been perfect — but in both cases the project fell through because neighbors objected, believing it would create too much traffic,” Rose said. “We need available parking, but the traffic is not going to be overwhelming. People would use the house during the day but would not stay overnight. We would not change the exterior, except maybe to improve it.”
To be turned down twice has been devastating but not daunting for Rose and stroke survivors associated with the foundation. Rose is pursuing the project with the same spirit and determination she showed when founding the Summer Gala cancer benefit 16 years ago. Sponsored by the Johnson County unit of the American Cancer Society, the gala auction nets more than $500,000 annually and has raised more than $6 million for cancer research since 1982.
Physician Steve Simon, medical director of clinical affairs at Mid-America Rehabilitation Hospital in Overland Park, believes what Rose is trying to do for stroke survivors is unique, invaluable and desperately needed.
