Got ____? Aphasia: At a loss for words
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Using adaptive equipment and aphasia-friendly recipes, members create culinary delights in their weekly cooking group. From left to right, Dolores Donatello, John Healy, volunteer Linda Gould, and Bob Mayer. Courtesy Adler Aphasia Center |
It’s hard to daven properly because I have to learn again,” said Avi Golden, who is recovering from a stroke that left him with aphasia – difficulty in communicating – as well as difficulties in using his right arm. Golden, who is an Orthodox Jew, has made great strides in his recovery over the last three years, with the help of the Adler Aphasia Center in Maywood, but he has a hard time with prayer, as the stroke left him unable to read Hebrew. On Shabbat he goes to synagogue, but he has not yet felt ready to be called up to the Torah for an aliyah. “I look and I pray,” he said. “It’s frustrating, but it’s good also.” In September he is planning to start taking classes at Lehman College in the Bronx, where he will be working with the speech clinic “to learn Hebrew again.”
Meanwhile, the 36-year-old Golden, who lives in Queens, is continuing to take classes at the Aphasia Center and is looking forward to performing in its Aug. 11 presentation of “Guys and Dolls.” “I have a very small role, a talking role,” he said.
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The center can be a bustling, noisy place. On Monday through Thursday mornings in its Maggie’s Café, dozens of people can be found eating, socializing, and planning their daily activities. One recent morning at their “Meet and Greet,” about 40 were looking forward to their sessions on art, writing, movies, computers, law, advocacy, and drama. Although many center members suffer from communication disorders due to stroke, head trauma, accident, brain cancer, or surgery, such activities enable them to improve their communication skills in creative and interesting ways.
Golden and two other center members were panelists in a recent information session on stroke and aphasia held at the Teaneck offices of health insurance brokerage firm Singer Nelson Chalmers.
Despite a heart condition, Golden had been a very active person, working as a paramedic, and enjoying snowboarding and rock-climbing. The stroke occurred after heart valve replacement surgery. He’s been recovering ever since, and, with an optimistic smile, he says that he would like to go back to school and study to be a doctor. He reports that, remarkably, he has been able to take up snowboarding again. But he still has tremendous challenges to overcome. “Letters and numbers are so hard … very, very hard. In my head it’s perfectly normal,” said Golden. But he added, “Speech is a problem. It’s slowly getting better and better.”
The three panelists wore “Got _________?” T-shirts. This parody of the “Got milk?” dairy campaign highlights the main problem of many aphasic people – inability to enunciate their thoughts, or difficulty in doing it.
The panelists explained that aphasia happens when there is damage to parts of the brain responsible for language. This can affect speech, the understanding of spoken words, and reading and writing abilities. “It affects a person’s ability to communicate, but does not affect their intellect,” an information card from the Adler Center explains.
Panelist Mary Slade of Hackensack, who worked for Citigroup, describes her pre-stroke self as a “multi-tasker.” After her stroke, her life changed in significant ways and she had to adapt. “I knew what I wanted to say, but it didn’t come out. You want to say ‘right’ and you say ‘left’…. It’s difficult not being able to go to a doctor and say ‘fix it.'”
Over time, she made a dramatic recovery. “Now some days are so good I forget that I have aphasia,” she said. “It does get better. Attitude, attitude, attitude makes you well or makes you sick.”
Walter Nolting, an 82-year-old Dumont resident and former postal worker, explained how, ironically, he stuttered badly almost his whole life, until his stroke in 2005. “Now I don’t stutter anymore, but it’s hard to get [words] out. I know what I want to say but can’t say it.”
“Aphasia affects each person differently. Some people can read or write but can’t speak much. Some people can speak well and reading and writing are fragmented,” explained Nolting. “Because of the way we speak, many people incorrectly assume that we are drunk or not intelligent. I get that all the time.”
“It’s like being in a country where you don’t speak the language,” added Karen Tucker, executive director of the Adler Center. “They say yes when they mean no.”
Jessica Dionne Welsh, education and training coordinator at the center, explained that aphasia is like a file cabinet whose contents get tipped over and mixed up. “Words that are closely related get confused.” She reported that the three panelists are not working, and added that aphasia “forces people into really early retirement.”
Elaine and Myron (Mike) Adler of Franklin Lakes founded the center in 2003. It serves between 80 to 100 members whose average age is the mid-60s. Seventeen staff members and more than 50 volunteers run the center’s programs.
Elaine Adler recalled how 17 years ago her husband Mike, an active and successful businessman, became aphasic. “He had a [heart] bypass [operation] and five days later a blood clot went to the brain,” said Adler.
“When he got better we realized that we are the lucky ducks,” she said. “Many are not as fortunate as we are.” Native New Yorkers who grew up in Manhattan, Mike and Elaine Adler moved to a small house in Paramus more than 50 years ago. Elaine Adler said that their business, Myron Manufacturing, was started in a garage. The company, which sells such items as pens, mugs and key rings to help companies advertise, grew over the years and is now in a large facility in Maywood.
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Mike and Elaine Adler in front of the center they founded in 2003. Jerry Szubin |
The Adlers owned another building nearby that they decided to use for an aphasia treatment and research center. “Mike hired a woman to go on the Internet to find out about aphasia,” Adler said. That is how they discovered Dr. Audrey Holland, a professor at the University of Arizona in Tucson. “She sits on our board. She’s a leading aphasiologist,” Adler said. The couple also found a program in London that had prepared a manual for treating aphasia. “In London we observed the Connect Program. We learned about having group therapy,” said Adler. “Connect had a book and we adapted it for American use.” More recently they have had the manual translated into Hebrew, for use in the Adler Aphasia Center in Israel (see related story).
The Adlers have four children and nine grandchildren. “When Mike got sick, our daughter ran the business,” said Adler, who was running her own company as well – a catalogue business called “Comfortably Yours,” which sells products for aging consumers. According to its website, the products are “directed to the less active, more infirm” consumer. “When Mike got sick he used a lot of my products,” she said. Now that he has recovered, she added with a smile, “I send him to work every day. I say, ‘Go make money so I can spend it.'”
The Adler Center has attracted visitors and members from many corners of the globe. “People from Aruba came to learn about the center. A speech pathologist from Italy came to learn,” said Adler. She told of an Ethiopian man who came to the Adler Center when he was told that nothing more could be done for his aphasia in Ethiopia. “My dream is that I want the word ‘aphasia’ to be at the tip of the tongue,” she said. “More than a million people [in the United States] have it, not even counting the GIs coming back [from the Persian Gulf] with traumatic brain injury. Most people still don’t know what aphasia is.”
Adler said that after traditional therapy you frequently hear the phrase “You’ve plateaued.” “It’s a word that should be stricken.” She has seen, in her own husband and in scores of members in the Adler Aphasia center, striking recoveries. “Many, after stroke, are in comas, or not able to walk or speak.” But with hard work and therapy they can make progress. “Inch by inch, it’s a cinch,” she said.
“We have the best speech pathologists in the world,” added Adler. “They are so creative.” For instance, communication coaches Karen Castka and Ginette Abbanat are directing “Guys and Dolls,” with center members playing all the roles. Adler recalled, with amusement, one of the center’s past productions. “We had more men than women [members participating], so in ‘The Sound of Music’ some of the men had to be nuns.”
“We didn’t want [the center] to be medicinal,” she stressed. The people who come there for help “are not clients. They’re not patients. They’re members.” The members come from all walks of life, and many different professions and vocations. “We have doctors, lawyers, and Indian chiefs. There’s a cardiac surgeon, a hand surgeon, a man who played the violin in the New York Philharmonic, a nurse, and a truck driver.” Another member worked for the United Nations. “His whole job was speaking,” said Adler. “Another was a rear admiral in the Coast Guard.”
Welsh, a speech language pathologist, said that classes run twice a week and members can sign up for Monday and Wednesday classes or Tuesday and Thursday classes. “Each hour we have between four and seven different offerings,” she said. Some of them, like Communication Strategies, are assigned classes, because they need to be homogeneous in terms of communication ability. “Other groups are more mixed. We make sure that everyone can participate,” she explained. “Everything is group-based except computer activities. Volunteers help members with computer projects and there is aphasia-specific software.” Welsh noted that members can become e-mail penpals with members at SCALE – the Snyder Center for Aphasia Life Enhancement in Baltimore. “The two groups Skype with each other,” she added, referring to the software used for video-chatting.
A member-run store, dubbed “Something Special,” sells products made by the members, including greeting cards, gift boxes, and calendars. Other areas are set up for art projects, photography, exercise classes, cooking, music classes, a Nintendo Wii station, and even a courtroom for mock trials. “Adler’s Court is an activity where the members reenact a courtroom drama every week,” said Welsh. “They sit on the jury and act out the whole case.”
“Our goal is to create a natural environment for people to communicate and relate to each other,” she added. “People use it as a community. For some people this becomes their life after aphasia…. It’s the life participation approach to aphasia. It helps people to re-engage in life.”
The center is also engaged in research. Holland, now a professor emerita at the University of Arizona, serves as director of research and education. She and Gretchen Szabo, the research speech pathologist, along with other administrative staff members, have presented their findings at national and international conferences. One presentation, co-authored by Szabo, Holland, and Welsh, was called “Wii-habilitation and aphasia groups: Systematic observation of communicative acts during four aphasia Wii groups.” Among their conclusions was that “[p]reliminary review suggests the use of Nintendo’s Wii Sports … provides psychosocial benefits including experiencing group camaraderie, virtually engaging in a past activity, and sharing the experience with others. It also provides opportunities to communicate reactions, celebration, disappointment, assistance, support, anticipation, competition, humor, and direct responses to other’s questions or comments.”
Members pay $18 a day to attend sessions that run from 10 a.m. until 2:15 p.m. However, the center, a 501C3 nonprofit, is mostly supported by private donations. For instance, Whole Foods donates food used in the cooking classes. One recent gift to the center was a $50,000 donation from Maggie and Bill Kaplen of Tenafly, which was used to build and equip Maggie’s Café, where members start off each day at the “Meet and Greet.”
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