Author: Thomas Goldsmith, Staff Writer for NewsObserver.com email: firstname.lastname@example.org or 919-829-8929
RALEIGH – Gerald Wolberg, a distinguished immunologist and author of dozens of academic papers, recently earned applause for another achievement.
He spoke two words.
“Gold medals,” Wolberg said, softly and slowly.
As Wolberg, a stroke survivor, uttered the hard-fought words, he got applause from others in a discussion at WakeMed about pot-smoking Olympian Michael Phelps. Wolberg, 71, and fellow clients of the Triangle Aphasia Project are intelligent, capable adults working hard to overcome aphasia, the inability to communicate found in brains damaged by strokes, tumors, dementia or injury.
The disorder that Wolberg fights is increasingly common in an aging nation, with about 80,000 cases of aphasia a year cutting deep into people’s abilities to speak, read and comprehend. In North Carolina — with its stroke belt habits, dangerous rural roads and brain- injured war veterans returning from Iraq or Afghanistan — patients with new strokes and years-old problems alike have created a critical mass of people needing treatment, experts say.
“If I were only getting new brain injuries and new strokes, that would be one thing,” said speech pathologist Maura Silverman, founder and director of the Triangle Aphasia Project at WakeMed Rehab.
“But I am still getting calls and e-mails from people who say, ‘My husband is so depressed — it’s been so many years, and he still won’t get out and about because of his aphasia.’
Recovery can take place quickly, or it can extend over years and well past health insurers’ willingness to pay for therapy. That means Silverman finds plenty of patients from the Triangle and beyond who will pay modest fees for cutting-edge therapy that emphasizes social interaction, real-life skills and forging new neural paths around damaged tissue.
“Why did I make you struggle so hard when I already knew the answer?” Silverman asked Wolberg’s group. “Every time you struggle like this, it opens up pathways in the brain.”
Marilynn Wolberg, Gerald’s wife of 42 years, said family members also struggle as they work to communicate with loved ones and to explain to old friends why someone with aphasia is so drastically changed.
“As more people get older and the more we get the word out about aphasia, the general public will get more familiar with it,” she said.
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Silverman, 43, thinks people with aphasia need more than the few months of hospital and outpatient therapy that most health insurance covers. Through the Triangle Aphasia Project’s approach, clients get long-term treatment focused on group interaction and everyday skills such as ordering in restaurants or making casual conversation with friends.
“The standard treatment is over a limited period of time, often in the acute phases of brain injury or stroke,” said Dr. Kenneth Carnes, of Raleigh Neurology Associates. He has often referred patients to Silverman. “But the brain reconnects and remodels over the long term.”
With a $150,000 annual budget, the program holds Aphasia Day, a weekly therapy and group session, at WakeMed, as well as sessions at other Triangle locations. Participants range from older people with brain tumors to Hope Yarbrough, 31, a former speech therapist who suffered brain injury in a catastrophic car crash five years ago.
“It has helped me so much with my speech, helped me to talk to people one on one,” she said at WakeMed. “I couldn’t find the right words. I still have aphasia.”
The main goal of aphasia therapy should be restoring people’s ability to live their daily lives, Silverman said. Many people with the disorder otherwise wind up too anxious to venture from their homes, becoming socially isolated and prone to physical and mental complications.
For those whose need drives them to seek help, Silverman offers a mix of group therapy, encounter session and motivational speaking. During group sessions, the speech therapist pushed group members, over and again, to say something, anything, to “get it out there”.
“If you get it out there, you can fix it,” she said. “It’s OK to make mistakes. That’s why we come to Aphasia Day.”
At a recent WakeMed session, Kim Greene, 47, also a stroke survivor, held up a picture of her son, Leesville Road High School football standout Zach Greene.
Peers around a long table watched closely as Greene told her son’s story with her voice, hands, face and scrawled letters on scratch paper.
Humming “Pomp and Circumstance,” she made a flat motion above her head to indicate a mortarboard.
After writing on a piece of paper: “Leesville!”
Silverman: “Writing helped get that out.”
Greene: “He graduated early and he …. Duke.”
Silverman, smiling: “Don’t worry about every little word.”
People with aphasia need safe places to make mistakes, to forget names, to say words wrong. Friends who can deal with the long pauses and gaps in conversation can be hard come by, family members say.
Marie Pahl taught at Raleigh’s Aldert Root Elementary School for 30 years, her husband, Andy, said at Aphasia Day. Her severe stroke eight years ago caused speech problems that even old friends couldn’t handle.
“The friends all just … poof!” Andy Pahl said.
Five years ago, Silverman and early supporter Carolyn Camp ran with the idea that people with aphasia shouldn’t stop treatment when they still have room for long-term improvement. While working in hospitals including Duke, Silverman often saw patients leaving treatment because their insurance coverage had run out.
“She was frustrated because she could see people needed a lot more than insurance would pay for,” Camp said.
A former academic with a background in education and sociology, Camp got involved with aphasia work when her husband, Ray Camp, formerly a professor at N.C. State University, had a severe stroke in 2000.
As with speech therapist Hope Yarbrough, aphasia struck at the center of Ray Camp’s life. He had taught public-address rhetoric at the NCSU speech communication department.
“The ironic part now is that he is not able to speak,” Carolyn Camp said.
Ray Camp got treatment while hospitalized, then a few more months and an expensive in-patient stay at a University of Michigan aphasia treatment center, one of the few in the country.
“We started looking for other long-term treatment in this area, and at that time there wasn’t any,” Carolyn Camp said.
The Camps were up against conventional wisdom that said aphasia patients typically made little progress after the first six months to a year.
“We know that’s not true,” Carolyn Camp said.
Silverman left Duke to start a long-term aphasia treatment program with an unconventional, nonprofit approach. The current program relies heavily on donations and charges minimal fees.
“She went on little or no salary for three years,” Camp said.
Elaine Rohlik, executive director of the WakeMed Rehabilitation Hospital, said the project’s model of aphasia treatment fits into the hospital’s approach of lifelong care for people with disabilities.
“Aphasia can lead to social isolation, weight gain and depression,” Rohlik said.
“We have a commitment to look at what happens to people after the medical phase.”
WakeMed’s link with the project means that Silverman has office space, a salary and space for group sessions. Numbers of people with aphasia seeking treatment continue to rise, sometimes outstripping her resources. But she leaves Aphasia Day each week encouraged by the improvements she continues to see in clients such as Wolberg and Greene.
* * *
It was Kim Greene, the football player’s mother from North Raleigh, whom Silverman had asked to tell that complicated story about Michael Phelps. The Olympian was photographed smoking marijuana and could lose $50 million in endorsements. Kim made swimming motions with one arm, then patted her chest.
“What do they call those things?” someone asked.
“Champions,” another group member offered.
“Gold medals,” Wolberg said, smiling.
TIPS FOR COMMUNICATING WITH PEOPLE WITH APHASIA
* Use short, uncomplicated sentences.
* Repeat or write down key words.
* Turn down loud radios or TVs and minimize other distractions.
* Include the person with aphasia in conversations, asking for and valuing his or her opinions.
* Encourage speech, gesture, pointing, or drawing, anything that communicates.
* Allow the person plenty of time to talk.
* Help the person get involved in activities in the community.
SOURCE: THE NATIONAL INSTITUTE ON DEAFNESS AND OTHER COMMUNICATION DISORDERS, NATIONAL INSTITUTES OF HEALTH
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