Can you imagine what it would be like if you couldn’t answer the phone, you couldn’t talk to your children, you couldn’t write your name, you needed someone to speak for you, you wanted to say ‘yes’ but you said ‘no’?"
These questions asked on the Website of the Adler Aphasia Center in Maywood help explain why Mike and Elaine Adler of Franklin Lakes felt the need to create a place where people with aphasia could learn new communication skills and, says center executive director Karen Tucker, "rediscover life and achieve self-sufficiency."
Mike and Elaine Adler stand in front of a Hackensack billboard publicizing the Adler Aphasia Center. June has been named "Aphasia Awareness Month" in New Jersey.
The privately funded facility which Tucker said is the only institution of its kind in the world was established by the Adlers in ‘003. Since that time, it has received two commendations from the State of New Jersey. The most recent, awarded last Thursday, not only recognized the center’s contribution but declared the month of June "Aphasia Awareness Month."
Some 13 years ago, Mike Adler, who was then running Myron Manufacturing in Maywood, suffered a stroke after bypass surgery, leaving him with aphasia, a disorder of the brain that most commonly affects a person’s ability to communicate. Tucker noted that about 1 million Americans have this condition, whether from a stroke or an injury to the brain.
"Mike couldn’t walk or talk," said Elaine Adler. "The speech therapists did their best," but it didn’t help. The Adlers, who have been active in Jewish affairs for many years, hired a medical research librarian to find out what was being done to treat the condition, but she found little more than facilities offering speech therapy. What the Adlers did not find was a program that could help Mike Adler adjust to living with aphasia. So they set out to create one themselves.
"We wanted to do something more," said Elaine Adler. "We wanted to open a center where people with aphasia can come and be comfortable, where they can realize that they’re not alone in this world." Today, she said, her husband is once again able to answer the telephone.
Tucker, trained as a gerontologist, told the Standard that "all asphasia is different" and that "it leaves the intellect intact."
"We’ve had a lot of success stories," she said, noting that the center which welcomes both aphasics and their caregivers has served about 1’5 people since its inception and at present serves 80 aphasics and 37 caregivers. Members come from diverse geographic areas and range in age from 30 to 90.
Tucker pointed out that success is measured in different ways. Some people have become confident enough to go back to work, and she’s seen others begin to speak for the first time.
"Without exception," she said, "everyone improves at some level."
Adler pointed out that the center structure has been closely modeled on Gilda’s Club (for those with cancer and their families), which embraces the idea of peer support. The center is open Monday through Thursday from 10 a.m. to ‘:30 p.m. and charges a nominal fee for unlimited use of the staff and facilities. Most people come about two days a week.
In addition, the center is actively engaged in advocacy, education, and research. "We’re educating doctors," said Tucker. The center brings in residents and interns from Hackensack University Medical Center and the University of Medicine and Dentistry of New Jersey and in meetings that include both center staff and members with aphasia staff members explain both why it is important to tell patients about this condition and how to talk to them about it. The program will soon expand to include doctors from Englewood Hospital and Medical Center.
Adler is particularly proud of the center’s computer program, customized to match the personal profile of members. For example, the onsite computer coach may scan in pictures of a member’s family and center volunteers will work with that member to help him or her recite the names matching each picture.
Also important is training and educating police officers about the effects of aphasia. "We try to reach out to first responders," said Tucker, explaining that police officers may mistakenly believe that someone with aphasia is "ignorant or drunk." To prevent that, members are given advocacy cards to carry with them, explaining their condition.
Activities are offered on a semester basis, and every member is pre-assigned to a communications strategy group facilitated by a speech therapist. Both members and caregivers are offered support and educational resources as well as activities such as art classes, exercise programs, cooking classes, and book clubs.
For the caregivers, the majority of whom are spouses, "it’s mostly about respite," says Tucker, noting that spouses have formed a strong bond and frequently go out together.
Adler pointed out that members are also taught skills that help reintegrate them into the community for example, how to order from a restaurant menu. If aphasics are unable to verbalize what they want, she said, they can point or use another technique to indicate their choice.
On June 5, the Adler Center put up a billboard on Temple Avenue between Main Street and Hackensack Avenue. "We’re interested in getting the word out," said Adler, noting that a gala dinner will be held for the center on Sept. 14.
"I want people to know there’s life after aphasia," she said. "There are many things that can be done."
"We’re a ‘hope center,’" added Tucker. "We teach people they should never say ‘never.’ Long-term rehabilitation is possible."
For more information about the Adler Aphasia Center, call (’01) 368-8585.