The University Record, May 7, 1996
Aphasia victims and families learn to communicate, cope
Ray Kelch (left) and his wife, Sue Cowles, have had to learn new ways to communicate since his strokes.
Photo by Bob Kalmbach
"Men don't listen."
"Women talk too much."
"Why are you always interrupting me?"
"Can't you be more sensitive?"
Sound familiar? Trying to interpret gendered speaking codes like these is challenging enough to support a raft of publications on relationship psychology like the current best-seller Men Are From Mars, Women Are From Venus.
But if achieving good communication is a tough goal for the average couple, consider the difficulty when one spouse suffers from aphasia---the partial or total loss of the ability to communicate words. Each year more than a million adult Americans acquire this handicap, usually through stroke or injury.
"Everything coming in is understood 100 percent," says Tim Sprunger, 27, of his wife, Sheila, who became aphasic three years ago after complications following surgery. "It's trying to understand what she's thinking where the aphasia comes in."
Sitting quietly, Sheila has the glowing appearance of a healthy 25-year-old. But when she strains to enunciate the simplest words, the effect of her aphasia becomes apparent.
Sheila is a graduate of the Residential Aphasia Program (RAP), one of four clinical service programs at the Communicative Disorders Clinic. The program's intensive speech/language therapy is nationally recognized for its approach to helping couples cope with aphasia's frustrating effect on communication.
"Now that we've been doing this for a while, I've found that I can read her," Sprunger says. "I have this kind of sense of what Sheila's going to say, and it's hard not to speak for her."
"It helps a lot when they introduce therapy ideas to the spouse," says Sue Cowles, whose husband, Ray Kelch, first suffered a series of strokes 10 years ago. Cowles now works for the Communicative Disorders Clinic and draws from her personal experience when she makes presentations about aphasia and stroke awareness.
"It appears subtle, but it's really not," Kelch says of his aphasia symptoms. Kelch works as a stock keeper at U-M Hospital and has made an impressive recovery, but the road back has been difficult and continues to be a physical and emotional challenge.
"With the aphasia, I used to blame all of our problems on the fact that Ray was a man, " Cowles says. "But then I learned that what I thought was him ignoring me was really just him not understanding, so as I've learned more about that, we've developed a better communication style."
Other couples who have gone through the program face similar challenges as they adapt to living with aphasia. Mike Navetta suffered a stroke two years ago. He and his wife, Donna, are learning that it's hard to recover their old life style.
"He's learned that I can be a sergeant," laughs Donna. "Mike was a strong, strong individual before his stroke and very independent. We are communicating with each other though he cannot really speak yet. It takes a lot of patience."
Mike, once told he would never walk after his stroke, has regained limited mobility and walks with the aid of a cane. He is able to enunciate only a few words like "yes" and "no." But his eyes, facial expressions and nods of the head re veal his determination as he listens intently and struggles to get his message across.
For many couples, other symptoms that accompany brain damage can add to the challenges. Connie Carpenter had to regain her memory as well as her ability to communicate after she fell in 1989. Today she appears good as new with an encouraging smile and keen sense of humor. Finding words is challenging, though, and Connie often mixes them up or uses the wrong term.
"I don't talk very well, but I'm improving slowly, and that's the way I like life," Carpenter says. "I'm still with my husband, and he helps me. If you can change, you can change for the good."
The experience has been one lesson after another for Roy Carpenter, Connie's husband of 40 years. "People think they can sense what the patient is trying to say," Roy notes, "but that really spoils the ability of the patient trying to find the word. And they get mad when we jump in too quickly. So we sort of play a game like charades."
Living with the impairment outside the home also can be strenuous with aphasics facing insensitivity and alienation. Simple tasks like talking on the telephone, ordering meals at restaurants and shopping in grocery store express lanes are all daily challenges.
But in addition to the everyday communication struggles, these couples deal with more serious issues, as well. A constant debate in the Sprungers' five-year marriage is whether to raise children. Some of Shiela's medication has serious risks associated with pregnancy. While Tim is happy without a family, bringing up a child is a major goal of Sheila's, so they agreed to attend some free classes on adoption.
After Mike Navetta's stroke, Donna was forced to take over his masonry contracting business and faced difficulties learning the ropes.
"A lot of everything was [in his head], and I didn't know about it," said Donna. And as a woman heading a male -dominated business she learned many lessons the hard way. Now Mike is able to read blueprints again and is happy to point things out, and Donna makes an effort to include him in everything.
"We can take him to a job site, and Mike can see what they're doing, which is good because someday it could be his company again," she adds. "We're very social people and our lives haven't changed that much. We go places, and we do things, and I feel that's therapy. We have a lot of friends, and they just talk to him like they talked to him before, and if he just says 'yes' or 'no' that's fine with them."
Donna feels her progress with Mike is like a cycle.
"You reach a certain point and stay there, and maybe a month later you suddenly start improving some more, and you just can't give up," she says. "You have to keep pushing."