DANCE OF LIFE
When a stroke makes communication near impossible, learning new ways to make contact is key.
BY:ANNE HOSANSKY
Photography by Fran Collin
If you were to walk into one of the rooms in a Connecticut rehab center, you’d see a startling sight: a woman doing a joyous African dance around a patient’s bed! That’s the scenario devised by Josephine Ndinyah-Akpedonu to help her husband recover from a massive stroke.
Josephine—whose name in her native Ghana is Mawutor (which means “one who belongs to God”)—came to the United States some 30 years ago to earn a Master’s Degree in Library Science at Duquesne University, and a second Master’s in Information Science at the University of Pittsburgh. A friend introduced her to a man who also was from Ghana. She and Francis Kwadzo Ndinyah-Akpedonu married 21 years ago, and have a 20-year-old son who’s playing a pivotal role in his father’s recovery.
At dawn one morning last October, Francis got out of bed and fell on the floor. He managed to get up and stagger to the bathroom, but Josephine’s concerned questions drew only incoherent words. Alarmed, she called 911. When the medics arrived, Francis refused to go with them. But Josephine insisted he be taken to Stamford Hospital to be examined. A CAT scan failed to show anything wrong. “I asked him questions,” she says, “and he kept saying something like ‘yeh’ in a language I didn’t recognize.” Suddenly, he began breathing very heavily. The medical team told her to leave the room while they worked on him.
Meanwhile, one of Josephine’s coworkers was waiting at the railroad station for Josephine to pick her up and give her a ride to work. Josephine had recently gotten a new job as Information Resources Manager for a company an hour away in Ridgefield. “I had no way to reach her,” Josephine says, “and I didn’t want her stranded.” Telling the medics she’d be back as soon as possible, she reluctantly left. As soon as she reached her office, Josephine made a quick call to the hospital before rushing back. A doctor gave her the shocking news that Francis had “slipped into a coma.” An MRI showed a massive stroke on the left side of his brain, and the carotid artery was blocked. When he came out of the coma, she was told, he’d be paralyzed on the right side.
Josephine called their pastor, who said he’d meet her at the hospital. When they got to the intensive-care unit, they found that Francis was on a respirator. Josephine phoned her son, Agbesi, who’s an engineering student in Philadelphia. “I didn’t want to alarm him,” she says. “I just told him, ‘Dad’s not feeling well.’” As she spoke her son’s name, she saw that the respirator—which had been registering at a level of 12—rose to 13, a great sign as to the movement of Francis’ heart. When Agbesi arrived later that day and said, “Dad, I’m here,” the respirator rose to 14. During the next few days, Josephine watched in amazement as the respirator readings climbed even higher—to as high as 16—whenever Agbesi spoke to his father.
Francis came out of the coma in a few days. Even so, the doctors found him unresponsive. After a week, he was moved to the Long Ridge of Stamford Nursing and Rehabilitation Center. Therapists attempted to exercise him but decided he’d reached a “clinical plateau” and gave up. The insurance company then refused to cover any further therapy charges because there was no “progress.”
“How could they see progress when he wasn’t getting therapy?” Josephine asks indignantly. Doctors were warning her to “prepare for the worst,” but they underestimated her strength. “I don’t take no for an answer,” she says. She’d already started to make a tape of Francis’ favorite African songs and would play them for him in the hospital. Now, she added more songs as well as hymns, which she repeatedly played for Francis while she danced around the room, waving her arms and singing praises to God. She invited the nurses to dance, too. They told her Francis seemed to be listening. “That means he hears,” she said.
Josephine has continued playing the music and dancing almost every day. She holds Francis’ good hand, moving it to the beat of the music, and says, “Dance with me.” She can tell from his smile that he enjoys “dancing” with her. “He gets a big kick when the nurses join in,” she says.
She also exercises him, because she believes muscular stimulation is important. She bought a ball and helps him squeeze it. Concerned about his teeth, which she cleans for him every day, she chartered an ambulance to take him to a dentist. “This woman won’t give up,” the nurses say.
Agbesi comes every other weekend. He tells Francis jokes they’ve enjoyed together and talks about baseball players and about TV commercials they both found comical. “Francis tries to chuckle,” Josephine says. When Agbesi can’t be there, he calls and Josephine puts the phone receiver next to Francis’ ear. “Every time my son speaks to him, Francis smiles. There’s so much love between him and our son.”
At Christmas, Josephine told Agbesi, “We have to show the committee [of therapists] there’s been a change.” When the committee members saw how much Francis related to his son, they said, “Yes, he’s responding.” They began giving him therapy again and persuaded the insurance company to reinstate payments.
When Francis first became ill, Josephine let everyone know. The news also was posted on the Ghana Association’s Listserve web site. The response was overwhelming. “Relatives and friends flew from all over the world,” Josephine says. “Africans, Europeans, Asians, Americans—all coming with love and comfort. My niece came from Georgia to stay with me for a month. They were lined up in the hallway. I can’t even count the number of people—volumes!”
She told everyone to smile when they went in to see Francis. “I don’t want anyone to shed tears. Say positive things.”
Josephine believes help is coming from a higher source, too. “We have a prayer line in our church (First Presbyterian Church of Stamford) and our pastors and members pray for Francis every Sunday and keep visiting him.” Josephine’s a deacon and an elder, as well as a Sunday school teacher. She’s also an ambassador to the “twin church” in her hometown of Peki, Ghana, to which her Connecticut church is linked. “I talk to God all the time,” she says. But when Francis had his stroke, she didn’t know what to say. “I just said, ‘Thy will be done.’”
Noticing how many of the patients in the rehab center are alone, Josephine began visiting them, too. “One of the women said, ‘I’m lonely.’ I told her, ‘Every time I’m here I’ll come to see you, too.’” Another patient offered to turn off her TV if Josephine would sing for her.
Josephine doesn’t know when Francis will be able to go home. He still can’t speak and has a feeding tube in his stomach. But she focuses on what a long way he’s come. “He’s now able to raise his good arm and give us a ‘high five’ sign. I tell him, ‘Let’s keep dancing,’ And that he gets an A-plus for his efforts.” A lot of people think she does, too.
