When the lines are down

Jerusalem has the country’s only center for severe aphasia – which leaves intelligence intact but impairs the ability to communicate.

By JUDY SIEGEL-ITZKOVICH
aphasia center 311 (photo credit: Inbal Rose)
aphasia center 311
(photo credit: Inbal Rose)
There are few worse conditions than having a normal mind imprisoned in a defective brain or body – one that prevents one from speaking, causes words to come out wrong, or makes it difficult to understand written language. The condition – not well known to the public – is called aphasia, from the Greek root aphatos– meaning speechless.
It may result from a stroke, trauma to the brain, a brain tumor or other disorders, and can be permanent or somewhat improved through training.
Brain scans of aphasia victims show lesions to the language areas of the frontal, temporal and parietal lobes. Oddly, depending on the region affected and the amount of damage, some people can’t speak but can write, while others can do the opposite. Some can sing but not speak, or have other deficits.
NO ONE knows exactly how many Israelis suffer from aphasia, as they tend to be hidden by society and sadly, victims are terribly ashamed of it, but it is estimated at many hundreds. Some were professors or have advanced degrees but, because of their illness, are suddenly unable to do what small toddlers can.
Clinical communications specialists use the term aphasia to refer to the total impairment of language, while they use dysphasia if there is only a degree of impairment. But since dysphasia is commonly confused with dysphagia (a swallowing disorder), many use the term aphasia for both partial and total language impairment.
Although the condition has been known by professionals for a long time, the first aphasia rehabilitation facility was set up in Israel only four years ago. The Adler Aphasia Center was established by Prof. Nava Ben-Zvi, president of the Hadassah Academic College in Jerusalem, after making connections with Elaine Adler of New Jersey – whose husband Mike, now an octogenarian, developed aphasia. The owners of a print business, the Adlers helped some 100 people in New Jersey. As supporters of Israel, they needed little persuasion from Ben-Zvi to open the first branch (www.hadassah.ac.il/adleraphasia) outside the US.
She adds that the college is not planning to open more branches, but does want to serve as a model for more around the country, and teach others how to do it. “Sheba Medical Center has started talks with us about it.”
LAST MONTH, the center in Maywood, New Jersey – set up in 2003 by the Adlers – hosted its first meeting for aphasia centers in the US and Canada as well as the center in Jerusalem. Called the Aphasia Alliance, the North American participants represented some three-dozen aphasia centers there who gathered with their Israeli counterparts to discuss best practices, facilitate research, share resources and ensure sustainability and growth of additional centers.
The non-profit New Jersey center is a community facility that addresses the long-term needs of people with aphasia, and is the only center of its kind in the New York-New Jersey area – a region that, alone, contains an estimated 20,000 people with aphasia.
The programs and activities offered all share the primary goals of enhancing the communication skills of its members, providing opportunities for social and peer support and building members’ selfconfidence.
It offers training, educational programs and on-site visits to share its unusual care model with its national and international audience of health care professionals, consumers, educators, students, speech-language pathologists and others interested in improving patients’ quality of life. The Maywood center is also actively engaged in research efforts examining the impact of its programs, and collaborates with researchers worldwide.
DR. AUDREY HOLLAND, professor emeritus of the University of Arizona and currently the New Jersey Adler Aphasia Center’s director of research and education, said at the end of the gathering: “It was a period of excitement, dedication and renewal for everyone involved. The sharing of ideas and issues was a major focus. Our hope is that we continue to develop a network to set standards and continue a dialogue with each other to benefit those with aphasia.”
Ben-Zvi, an expert in science teaching who has been president of the college for a decade, approved the appointment of clinical communications specialist Dafna Olenik – who had worked for 15 years at Ra’anana’s Beit Loewenstein rehabilitation hospital – as director of the Adler Aphasia Center.
“We are a branch of the New Jersey facility, and they give us some generous financial support,” says Olenik in an interview with The Jerusalem Post. “Until we appeared, aphasia had no advocates,” she said. “We are part of the college’s department of communications disorders, which trains clinical communications specialists,” she says.
Aphasia deeply affects the whole family, continues Olenik, who comes to work from her home in Tel Aviv. The aphasia patient is highly dependent, “but our center eases the burden by running group and individual activities to improve their functioning.”
Patients can be clinically screened quickly as they lie in a hospital bed or are at home, but a thorough assessment can take a few hours of carrying out tasks given by a professional. Some improve as the months pass, depending of the kind, size and location of the lesion, the patient’s age and the type of aphasia. But there are some who will never be able to speak at all, or properly, again.
A LARGE AMOUNT of useful information is provided in the Jerusalem center’s new Hebrew-language Hamadrich Leshavatz Mohi Ve’aphasia (Guide to Stroke and Aphasia). Prepared by Olenik and colleagues, the comprehensive, 160-page volume is easily understood by caregivers as well as by asphasia victims themselves who are able to read. The softcover book, produced with a ring-binder center, is full of hand-drawn illustrations, with chapters separated by cardboard dividers to make it easy to find a needed subject.
The excellent drawings are melded with the text almost like a comic book, and vital data is in turquoise-colored boxes. It’s all done very effectively, and makes for an easy read. The back cover has a pocket with a colorful card attached by a ribbon so that an aphasia victim can show others that he/she suffers from aphasia. It includes tips for people they encounter to communicate with them by speaking slowly and at a normal volume, being flexible, using maps and drawings to get a simplified message across, and making sure the person has understood before going further.
The book comes with a five-page index of Israeli organizations and institutions that can be of assistance to stroke and aphasia victims, plus a threepage list defining terms from MRI to rehabilitation.
The Hebrew-language volume can be purchased for a subsidized NIS 50 per copy (including postage and handling) from the Adler Aphasia Center at the Hadassah Academic College at 37 Rehov Hanevi’im, POB 1114, 91010 Jerusalem.
“We received the rights to publish from London’s Connect Center (www.ukconnect.org), which is a communication disability network for victims of aphasia, their families and caregivers. The Adler Center in New Jersey produced an American version of it, as the original British text was not suited to Americans,” said Olenik.
THE HADASSAH COLLEGE volume translated much of the data included in the English version, but was adapted for Israel. Much of this work was carried out by Bar-Ilan University translation and interpretation department chairman Prof. Miriam Schlesinger, a member of the center’s board. She became interested in aphasia when her husband Moshe, who suffered aphasia after a stroke, yet who continues to function despite the fact that he had been blinded during his Israel Defense Forces service. After his period in the military, he still managed to earn first and second academic degrees, programmed computers, established a family and worked in his profession. His photo, with his guide dog, is shown on page 148. Moshe is praised for his determination.
“He continues to communicate with his surroundings and radiate joy of life. He is an example of one who works tirelessly to overcome the difficulties aphasia presents.”
Olenik says her center hopes to translate the volume to other languages used commonly in Israel.
She donated some of the 1,000 copies printed to every Israeli hospital neurology department so that newly diagnosed patients can be helped by it.
BEGINNING WITH the first chapter, the Hebrew volume explain the risk factors for stroke and what actually causes it; recovery, medical tests, medications and their side effects, mobility and balance difficulties, eating and swallowing, pain, and even sexual relations after a stroke.
Regarding aphasia, the volume notes that the condition results from damage to the left side of the brain that controls many functions, including the right hand and leg, language and communication. Once discharged from the acute-care hospital, a patient can be helped by phyiotherapists, occupational therapists, social workers, neuropsychologists, dietitians and communications therapists. How to obtain support from family and friends at home is clearly explained, as well as where to go for other assistance. “You are not alone,” the book assures readers, both patients and caregivers.
Their rights and privileges from the National Insurance Institute and other institutions are also provided.
“Our aim is to treat them to reduce some of their limitations. We have a cantor who since his stroke can’t speak or sing. We also have patients who suffered brain damage after a serious road accident,” said the clinical communications expert. “We even know of children with aphasia as a result of terror attacks. It doesn’t matter to us what caused it. Our activities include people five or even 10 years after the event, but they continue to work on their disability.
“The children go for rehabilitation at Beit Loewenstein and elsewhere, so we focus on adults.
They learn to communicate with a personalized board showing letters, words and phrases.
“We deal mostly with chronic situations and with the more difficult cases – people unable to speak again, or even write. Our center doesn’t treat those who improve in their speech, as they can go to clinics.”
The four public health funds pay for some rehabilitation, but only 12 treatments. No money, says Olenik, comes from the Ministry of Welfare and Social Services, or from the Health Ministry. The Adler center in Jerusalem charges participants only NIS 40 a day, with the benefactors and the Hadassah Technical College covering the rest. There are only two paid professional workers, plus five volunteering clinical communications specialists. Meetings are usually on Wednesdays in a large room, and perhaps in a few other spaces at the Rehov Hahavatzelet college.
Among the participants, Olenik gives the example of Avi Nadra – a man who had a stroke and was unable to speak as a result, but uses his communications board, has word lists and even uses the Internet.
“Before his stroke, he was a professional simultaneous translator who spoke five languages. He uses intonation and gestures to help him. He enjoys music a lot. We try hard to boost what he still has, not deal with what is no longer there.”