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Eunice Bustillo faced a long recovery following a stroke at age 40. After a week in the hospital and a month at a rehabilitation center, she continued to have trouble with vision and motor functions. Even more difficult for Ms. Bustillo, the owner of a consulting business and the mother of a son who was 3 at the time, was overcoming aphasia, a language disorder that is a common aftereffect of stroke.
Aphasia impairs the ability to process and understand language, including speaking, reading and writing, while leaving intelligence unaffected. Recovery can require intensive therapy including hours of practice to repair and reorganize damaged language functions in the brain.
Encouraging new evidence is emerging to suggest the brain's plasticity, or its ability to change and heal, may last many years after injury¡ªfar longer than the commonly assumed plateau for speech recovery of about six months to a year after stroke. Insurers, for example, may only cover the cost of one-on-one speech therapy sessions for the first few months.
¡°The conventional wisdom has long been that after a year post-stroke, you aren't going to get any better,¡± says Cynthia Thompson, director of the Center for the Neurobiology of Language Recovery at Northwestern University. ¡°But the brain continues to change until you die.¡±
The new federally funded center is studying aphasia's different forms, such as the inability to understand and form sentences or to recover spelling and writing. The center also is studying factors, like blood flow in the brain, that may affect language recovery.
Growing numbers of younger people are suffering from strokes linked to diabetes, obesity, high blood pressure and high cholesterol. Strokes also may occur from uncontrollable factors such as a rupture of the blood vessels in the brain¡ªthe cause of Ms. Bustillo's stroke in 2003.
For young patients, the obstacles to recovery from a stroke may seem magnified by their youth. They often face the potential for a lifetime of disability including aphasia. As a result of her stroke, Ms. Bustillo lost the ability to read Dr. Seuss books to her son. She was too embarrassed to take him to the park because she couldn't summon the words and sentences to speak to other mothers.
Nearly 20% of stroke victims are under 55, compared with fewer than 13% in the early 1990s, according to a 2012 study
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More centers and clinics are recognizing aphasia as a chronic condition that can be managed and improved over time, like asthma or diabetes. They are offering long-term group therapy that is far less costly than one-on-one sessions. And they are turning to technology, such as virtual speech coaches that interact with patients on computer terminals, with several patients monitored by one therapist.
At the Rehabilitation Institute of Chicago, researchers are studying whether treatment outcomes of such therapy can be improved with use of certain medications or small amounts of electrical stimulation. Chicago and other clinics also offer more-costly monthlong intensive language-recovery programs that can be repeated regularly.
Studies show that group programs help patients recover language in part by providing a supportive environment. Many use a strategy known as the Life Participation Approach to Aphasia, which encourages patients to set their own goals, express themselves in different ways such as drawing and writing, and return to activities they enjoyed before the stroke.
¡°Aphasia is one of the most isolating conditions, but in group treatment people who may have been sitting at home alone for four or five years suddenly find there are other people out there just like them,¡± says Roberta Elman, who helped to establish the life-participation and group-treatment approach and who is president of the Aphasia Center of California, in Oakland. The center matches patients to weekly communication groups based on the type of aphasia they have.
The Adler Aphasia Center, in Maywood, N.J., offers a life-participation approach to speech recovery with activities such as acting workshops, debate clubs and craft classes in three 15-week semesters annually. Most members attend twice a week and pay $25 per day. Executive director Karen Tucker says the center provides scholarships and turns no one away. Patients can join at any point in their rehabilitation process.
Adler also trains medical interns, residents and other health-care workers ¡°so they can communicate with aphasic patients and see how people can improve given the right supports and opportunity,¡± Ms. Tucker says.
Ms. Bustillo was referred to Adler in 2005 by the rehabilitation center where she was treated after her stroke. She was helped early on by occupational and speech therapy but still had trouble speaking, reading and writing and was unable to return to her consulting business. She also was unable to drive and felt she had lost her independence and ability to help her family.
At Adler, she was relieved to meet others with the same challenges, she recalls. She took a communication strategies class that taught her how to deal with people in stores or on the phone, such as by asking them to slow down and explaining her problem with aphasia.
Adler staffers encouraged her to take a jewelry-making class, which helped her regain dexterity and vision, and she now volunteers at Adler teaching other members how to make gifts and jewelry for a store to benefit the center.
¡°I still often go home so tired, and I have to think before I talk and make sure I say the right thing,¡± she says, stumbling only slightly with her words. She continues to improve with the help of Adler speech therapists and interaction with other members. ¡°You still mourn the person you were before, but this has been like dying and getting a new life,¡± Ms. Bustillo says.
Intensive one-month aphasia programs are available at a cost of $8,500 to $20,000. The Rehabilitation Institute of Chicago program, started five years ago, has shown measurable improvement in more than 80% of participants, according to Leora Cherney, director of its Center for Aphasia Research. Some patients return three or four times to continue building skills.
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The Chicago center also offers less-expensive options, including community group therapy. It developed a program called ORLA¡ªwhich stands for Oral Reading for Language in Aphasia¡ªa therapeutic approach in which patients practice reading sentences aloud repetitively.
A computerized version uses a virtual therapist, in the form of a computer avatar. A CD version, minus the avatar, can be purchased for $85 by patients or therapists, and an app for mobile devices is in the works.
Dr. Cherney is testing a more-advanced online version with an avatar whose mouth moves, like that of a real person, to help patients pronounce words. She is recruiting volunteers for a study of six weeks of intensive therapy that can be done at home. Also available with the avatar: AphasiaScripts, a $110 player with 20 practice scripts, or a $229 version which allows a therapist or family member to customize scripts.
¡°With money in the health-care system getting tighter, we can use technology to help patients with aphasia practice speaking, listening and reading skills several hours a day while minimizing costs,¡± Dr. Cherney says.
