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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.

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.”

 

More on: Got ____? Aphasia: At a loss for words

 
 
 

Help for aphasia caregivers

Mary Slade, a panelist at an Adler Aphasia Center information session who is recovering from aphasia, observed, “It takes a family time to accept that a person had a stroke and has aphasia. When you first get sick there is often anger, confusion, and frustration.”

Elaine Adler became a caregiver when her husband Mike had a stroke. “When the breadwinner becomes aphasic, what happens to the family?” Adler asked. “The spouse has to take care of the aphasic and the family…. I realized how important it is to help the caregiver.”

 
 

Adler Aphasia Center in Jerusalem

According to the Hadassah College Website, the Adler Aphasia Center at Hadassah College in Jerusalem is the “first international branch of the Adler Aphasia Center in New Jersey.”

“My friend Miriam Josephs, who was very active in Hadassah, raised $100,000 for scholarships for Hadassah College, where they teach speech pathology,” said Elaine Adler. “That led to starting the center there.”

 
 

Aphasia advocacy

A bill has been introduced into the New Jersey legislature (S1931 and A2811) to establish a New Jersey Aphasia Study Commission in the Department of Health and Senior Services. Sponsors of the bill include state Sens. Loretta Weinberg and Diane Allen and Assembly members Valerie Huttle, Gordon Johnson, Connie Wagner and Joan Voss. The Senate version of the bill (S1931) states that the purpose of the commission is to: “establish a mechanism in order to ascertain the prevalence of aphasia in New Jersey, and the unmet needs of persons with aphasia and those of their families,” to “study model aphasia support programs,” and to “provide recommendations for additional support programs and resources…”

 
 
 
 
 
Hilton Cohen posted 16 Aug 2010 at 12:07 PM

I do not believe that hard work cures aphasia. If you have ever seen a PET scan of someone with aphasia it is an injury in which part of the brain dies. Part of the PET scan is green(live) part red (diminished blood flow) and part black(dead) if the part of the brain that controls speech is black the person will not be able to speak no matter how hard they try.If the brain regenerates nerves and allows speech to return this is not due to hard work, it is due to the amounts of certain chemicals in the brain which are different in each person.
To say or imply that it is hard work that cures or improves speech is a lie and does a dis- service to those with aphasia. This is blaming the victim.This is like saying those that have a stroke or brain injuries got them because they did something wrong rather than just bad luck.
Brain injuries are like broken bones. A broken finger cant be compared to broken spine yet both are broken bones.To say that those that regain their speech somehow try harder than those that dont is disgusting and arrogant! It is like saying a person with a broken finger that heals is superior to a person who remains crippled with a broken backbone!
If Mike Adler’s condition improved it is not because he somehow tried harder or is a superior man because he sells chotchkys it is because he is lucky, no other reason!
BTW do the Adler mensches take a tax write off on the building and utilities they ‘donate’ for the aphasia center?

Nehama Glogower posted 16 Aug 2010 at 06:50 PM

It’s not about blaming the victim, it’s about not writing people off.  It’s about exploring possibilities, reaching and trying.  There is so much we’re still learning about the extraordinary brain we’ve been given and its capabilities.  Kindness and compassion mixed with hope, courage dreams and hard work is a mighty combination.  Kol Hakavod to the Adlers who are really making a difference.  They walk the walk while helping others talk the talk!

jason costello posted 16 Aug 2010 at 07:51 PM

Sir .
  Aphasia in 2 years @ 39 years.
  Hard of speech @ write @ read @ talk @ etc .
    Wierd world @ aphasia !!
  Thank U
  Jas

Hilton Cohen posted 17 Aug 2010 at 12:22 PM

Most people with aphasia no longer are able to work. The Adler center charges $18 a session and has 4 sessions a week. HMMM, $18 times 4 equals, $76 a week. I bet this keeps the riff raff out or at least the colored people out. The Adlers were friends with Russ Berrie and are friends with Berries widow. The Berries founded the Jewish old age home in Rockleigh. This is the most expensive old age home in the area. I believe it does not accept mediacre or medicaid, in order to keep the riff raff out. It has a hospice But a patient must die within 3 days or is removed from the facility,( the emmanuel brothers must love this place). The same wealth is everything mindset causes YMHA’s to charge 2 or 3 times what ymcas charge in order to keep out the untouchables.
I believe one of the problems in our community are the wealthy Jews that think of themselves as WASPS. They think money is everything and those without money are somehow inferior to them. But when you take a close look at their families and see their daughters married to shaygetz’s or how they pay their employees low wages, and are hated by their employees behind their backs you realize that money isnt everything and while money can buy a nice story in a small Jewish newspaper it cant buy happiness.

Molly posted 19 Aug 2010 at 11:32 AM

I had hayfever allergies for many years then suddenly they disapeared. Was it because I tried harder than those who have allergies that dont go away or did my body just find a way to overcome the alergy by itself?
Some older people who have worn glasses their entire lives find as they get older they no longer need to wear glasses. While others wear glasses their entire lives. Is this because some people try harder to get better vision or is it because the pupil/retina changes shape in some people as they age and this causes them to no longer need glasses?
can the same be said for brain injuries?

Jessica posted 19 Aug 2010 at 01:27 PM

I am a speech-language pathologist who works at the Adler Aphasia Center.  I do not know of anyone associated with the center who believes that if one just ‘tries harder,’ that aphasia will improve.

The type of aphasia, severity of the disorder, and pattern of recovery has a lot to do with the area(s) of the brain that are damaged (among several other lesser-understood factors). 

For many people, aphasia is a chronic condition.  In most instances, though, aphasia can and does improve over time.  Part of the recovery is due to healing taking place in the brain.  Other components of recovery include receiving the right amount and type of speech therapy that is specific to the individual’s needs and having many opportunities for real communication to occur.

That last part is where the aphasia center comes in.  We strive to create a place where people with aphasia (and caregivers) can connect with others, engage in things that are interesting to them, and communicate in any way they can.  I believe that it is through this process of connecting with others who are “in the same boat” that we see changes in people’s communication and quality of life.

 
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In balance, in harmony

Agnes Adler is a little pixie of a thing with a musical Hungarian accent. As she and her husband David walk into a room, she tells him to smile, to say hello, not to be a grump, and he lovingly responds, “Yes, Mammi, whatever you say.” He is wont to stay in the background, however, as an invisible flying buttress, supporting her in artistic endeavors and much more, while also creating his own massive sculptures.

David stands a full head taller than his wife, continues to smile the smile of the gentlemen chauvinists of his generation. He and Aggie love to sharpen their blades on their wit and humor. She complains, “I have to do everything and he expects me to wait on him hand and foot. Men! Impossible!”

 

Haiti: Two years later

‘When all else is broken, human dignity must stand whole’

Two years after the earthquake that devastated Haiti, medical students at Quisqueya University earlier this month took part in the island nation’s first “White Coat Ceremony,” marking the commitment of medical students there to providing compassionate, patient-based care.

This symbolic ritual for future doctors, now common at U.S. and Israeli medical schools, was introduced in 1993 by the Englewood Cliffs-based Arnold P. Gold Foundation. It has since spread to 18 countries, including Afghanistan, Japan, and now Haiti, thanks to the efforts of Tenafly resident Dr. Galit M. Sacajiu.

“Some of you may be asking yourselves, when medical school buildings and operating rooms have yet to be rebuilt and a single medical textbook is a luxury, when we have no laboratories, and so many of our brothers and sisters still live in makeshift homes, why invest in an event such as this ceremony of humanism in medicine?” asked Sacajiu, in her remarks at the Jan. 16 ceremony.

 

Love and hate in Bergen County

Communal meeting, interfaith gathering follow in Rutherford bombing’s wake

With the Jewish communities of Bergen County on heightened alert, some 200 religious and community leaders gathered on Jan. 12 to discuss the recent string of anti-Semitic incidents in the county with law enforcement and government officials.

The meeting followed by one day the most recent, and most serious, attack — a firebombing that could have claimed the lives of eight people. The incident targeted the old Queen Anne building in Rutherford that houses Orthodox Congregation Beth El, as well as the home of its rabbi and his family. Five of the eight potential victims were children.

 

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Will March 5 be D(ecision) Day?

WASHINGTON – March 5 is shaping up to be a crucial day in the effort to rein in Iran’s nuclear program.

In Vienna, the International Atomic Energy Agency (IAEA) will convene to consider its inspectors’ latest report on Iran’s nuclear program. The last such report came closer than ever to indicting the Iranian regime for making weapons, and it helped spur stronger international sanctions against Tehran.

Several hours later, in Washington, Israeli Prime Minister Binyamin Netanyahu will deliver a speech to an American Israel Public Affairs policy conference about what should happen next with Iran. Either before or after the AIPAC meeting, Netanyahu likely will meet with President Barack Obama to discuss Iran options.

 

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After a string of foiled plots...

WASHINGTON – When America’s top intelligence official said that Iran’s regime is considering attacks on U.S. soil, he cited a single incident and qualified the assessment with a “probably.”

Intelligence and law enforcement experts, however, say that the Jan. 31 warning by the director of national intelligence, James Clapper, was likely based on more than the evidence he cited.

“I would be surprised to learn a statement like that was not backed up by intelligence,” said Mark Dubowitz, executive director of the Foundation for Defense of Democracies.

 

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Locally, fear not but be alert

News reports notwithstanding, “There is no indication that there are any specific and/or imminent threats to Jewish communities in the U.S. at this time as a result of recent events,” according to an alert received this week by the Jewish Community Relations Council (JCRC) of the Jewish Federation of Northern New Jersey. Nevertheless, the alert said, that could change “should military action break out in the Middle East in coming months.”

An open attack on Iran is only one “trigger” that could raise the threat level, the alert said. “Increased pressure from sanctions, continued perceived threats from Israel, the United States, and others, sabotage against nuclear facilities, and continued alleged assassinations of Iranian nuclear scientists” could also bring about an Iranian response aimed at Jewish or Israeli targets in the West, especially the United States.

 
 
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