Ralph Pusey gathers no moss as he sails around the offices of the American Stroke Foundation in Mission. Although he doesn't have use of the fingers on his right hand, and his right leg takes some compensating, a perfectly healthy walker doesn't have to slow down to stay with him. Pusey's speech is a bit unusual—but it takes just a minute or two to settle into his rhythms and phrasing, and then it's a challenge to keep up with him. Pusey, 69, of Lenexa, looks strong. He looks happy and independent, and he knows that he's useful, because he serves as a role model for new stroke survivors who walk through the foundation's doors for the first time. "I'm here to tell people that after stroke, there is hope," Pusey said. "There is something more that can be done; there's a lot that can be done."
Stroke affects nearly four of five Americans—either themselves or someone they know. Stroke is the top cause of adult disability, leaving two-thirds of survivors with significant physical and emotional aftershocks. But for too long, there were no resources to help survivors and their families after they completed their immediate rehabilitation and their health care support system ended. That was true until the American Stroke Foundation was born 14 years ago.
The foundation offers compassionate but practical knowledge and service in a comfortable, home-like environment. There, stroke survivors get the continued assistance and support they need to reach their full potential. "When people suffer a stroke, they often feel terribly alone, and often they are angry and depressed," said Joan McDowd, the foundation's acting executive director. "By helping to improve everyday functioning, the foundation brings hope into these survivors' lives and the lives of their families and caregivers." According to McDowd and Pusey, and according to the people who've thrived through the foundation's work, stroke is not a death sentence. There are opportunities for a fresh start.
Pusey became a stroke survivor one morning in January 2001. His wife was out of town and Pusey got ready to shower. "Suddenly I couldn't hold my towel," he recalled. "I thought that was kind of funny. Then I quickly realized there was something very wrong." Rather than calling 911, Pusey called the Lenexa Police Department. When the dispatcher asked his name, he didn't know. When she asked where he was, he didn't know. At about that time, the chief of police happened through the dispatch area and was flagged down. She knew Pusey because he was a member of the board of CrimeStoppers, and she recognized his voice. Without that bit of luck, he would have died.
An extremely active man, Pusey had fingers in many pies around Kansas City. He was vice president and general manager of a prosperous security company, knew everybody, was on lots of boards, and never stopped to rest. In the blink of an eye, he was a man who could neither walk nor talk.
"I was in the hospital for two months and then did rehabilitation for six weeks," he said. "My wife, Debbie, and my children were just wonderful. They cared for me so well; I can't say enough about them." Debbie, though, felt that Ralph needed more help if he was to continue improving, so she pressed him to try the American Stroke Foundation. "I had been a college athlete," Pusey said. "I was active, a Type A person, and very involved in the community. Like many other people with stroke, I was upset because it affected my life so terribly. I didn't care about getting better. I was mad! I said No. My wife said, Do it!"
So he did. "I came here, and when I'd been here a little while, I thought, 'Hmmm, this is OK!'" Pusey said. "I started coming for the programs, for exercise, and for fellowship. The speech therapy here was wonderful. The staff was wonderful. The OT and PT students and the volunteers were wonderful."
After 10 years, he's still coming. And when he isn't involved in a class or mentoring a new stroke survivor, Pusey is working on his cattle farm in Miami County or playing poker—or ringing up old pals to raise money and goods for the foundation.
The foundation has "American" in its name because the vision of its founder and board is to be a model, developing a curriculum and structure that other cities across the nation could adopt as they become part of the foundation. At this time, though, the two metro offices (in Mission and Kansas City, Mo.) are unique in the country. The facility includes a "hangout room" with comfortable sofas and chairs where participants can relax and socialize; a kitchen, where skills of daily living are re-learned and practiced; an extensive fitness room; rooms for art, music, and conversational therapy and other classes; and offices.
American Stroke Foundation facilities and services are open to all adult stroke survivors. Participants must be able to meet their personal needs by themselves or have a caretaker with them at all times. And they must be able to interact in a socially appropriate manner with other stroke survivors, caregivers, families, and staff. Before attending any programs, participants complete an intake assessment (health history, current medications, emergency contact names, hospital preference, etc.) and attend an orientation. Services cost a nominal $65 per month for those able to pay; a sliding scale is used for people with fewer financial resources. For a membership application, call 913-649-1776.
The foundation offers a long menu of services, but it's mightier than its size might indicate. With a tiny staff (16-person board, director, program director, and office coordinator), it serves countless people mainly through a cadre of caring, dedicated volunteers like Joie Tenenbaum, a retired speech therapist who convenes a group of stroke survivors and works with them on conversational skills in a safe, warm setting. Other volunteers lead singing (many stroke survivors can't speak but can sing) or facilitate one of many educational and support functions the foundation offers Monday through Friday. "We could not survive without the volunteers," McDowd said. "Our work is also extended by the presence of university students studying occupational, speech, and physical therapy. By leading groups here, they provide a great service to stroke survivors while learning much that will enhance their own future practices."
At any given time, about 75 stroke survivors are using the services of the two metro foundation offices. Some attend two or three times weekly—usually for exercise and fitness—but others are everyday attendees. They come for education and to enhance their healing, but they come for more than that.
"We perceive that the social support we offer here is very, very important," McDowd said. "We focus on the complete person. That's what people say, over and over, is the most valuable thing about the foundation. It's the personal contact with other survivors." People come with all levels of ability, from those who could walk out of the hospital after their stroke to those whose recoveries are painfully slow, who need wheelchairs, who cannot speak, whose thought processes are compromised. McDowd tells of one man who, unable to speak following his stroke, developed ways of communicating with a pen. One day he gave his wife a sheet of paper with four circles on it; inside each circle was the number "36." After a long question-and-answer game, she discovered the message: He wanted her to check the tires on their car, and 36 was to be the ideal air pressure. Because the stress of post-stroke care can be enormous, the foundation offers plenty of assistance for caregivers, as well. Caregivers often accompany their loved ones for their courses or fitness classes, then stay for a support group or just some quiet respite time.
Here's a sampling of foundation offerings:
Verbal Communication. This program is like a natural conversation taking place around a table of friends discussing a variety of topics, from planning a vacation to discussing current events. For those who cannot speak, writing is encouraged.
Reading, Writing, and Math. Participants practice reading, writing, and math skills at the mid- to upper-elementary level of difficulty. Multi-tasking lessons that incorporate language, reasoning, memory, and motor skills are presented, and compensatory skills are used.
Exercise. Participants exercise, focusing on the trunk, upper body, and lower body. Some practices of t'ai chi and yoga are used.
Fitness. The fitness program is the next level for persons who have completed basic exercise and are ready to transition to a higher level.
That Darn Arm. Participants learn methods to stretch and strengthen their affected arm and hand. Equipment and techniques can easily be replicated and practiced at home.
1-Handed in a 2-Handed World. Participants are encouraged to increase their levels of independence by learning the best way they can perform self-care skills, homemaking, and leisure activities through adaptive strategies.
Music. This program uses music to promote skills of communication, socialization, and gross motor movement.
Caregiver Support. Caregivers meet in a safe and accommodating environment to share their feelings, frustrations, conflicts, and joys. The program provides an environment for participants to give and receive emotional support and encouragement as a part of a group.
Survivor Support. Survivors of stroke meet to explore the shared and individual meaning of their disease and recovery. Topics focus on aspects of grief, emotional healing, and recovery.
Educational Forums. Monthly educational programs present information on health topics of importance to stroke survivors. Guest speakers present a 30- to 40-minute lecture followed by questions and answers. Educational programs are open to stroke survivors, caregivers, families, staff, and the community. Topics are based on needs identified by staff with input from stroke survivors, families, and caregivers.
Computer Exercise. Computer classes provide an opportunity for individual learning based on participant need and desire.
American Stroke Foundation
Stroke Wellness Center
5960 Dearborn St., Suite 100
Mission, KS 66202
913-649-1776
www.AmericanStroke.org
Article By Lynn Anderson
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