CAROL KOSCHAK OF PLANO IS A WISPY, brown-haired woman whose face seems frozen in an expression of childlike surprise. This is partly because of her girlish features: wide, animated eyes and an easy smile that allow her to look much younger than her 49 years. But largely it is because most everything Carol has heard and read and said recently has literally come as a surprise.
Carol suffers from aphasia, a disturbance in the ability to comprehend and formulate language that is a result of a massive stroke she suffered two years ago. About 100,000 of the nation’s half a million stroke patients are afflicted with the disorder each year; head trauma causes it in another 200,000. In each case, a disruption of the blood flow to the brain—whether caused by vascular occlusion, hemorrhage, tumor, or intracranial swelling—cripples or kills brain neurons responsible for everything from simple motor tasks to complex cognitive faculties. When the disruption occurs in the left hemisphere of the brain, the locus of language proficiency, the patient’s ability to read, write, and speak is frequently impaired.
The problem is not intellectual: Carol’s thinking and most of her memory are just fine. But the mechanisms that translate her abstract thoughts into concrete verbal expression aren’t functioning normally. So when she attempts to articulate a thought or commit it to paper, it comes out incomplete or off-target; she can’t retrieve the word her thoughts are instructing her to say or she selects the wrong one or she butchers the pronunciation of the right one. And sometimes what she hears or reads, she misinterprets or simply cannot understand at all. “You know what it’s like to have a word on the tip of your tongue, or just when you go blank and can’t remember a place or a name?” asks Delaina Walker-Batson, an aphasia expert on the team treating Carol at the Texas Woman’s University Aphasia Center in Dallas. “That’s what it’s like for an aphasic patient most all the time. The thoughts we automatically render into language get lost in the translation.”
On a Tuesday morning in early December on the TWU campus, Carol seems nervous but eager to show me the progress of her therapy thus far. I first ask her what she felt when she realized the nature of her affliction. Her eyes crease and her lips purse in concentration. “It—was—bad!” she intones haltingly. As our chat continues, her words come laboriously, as if hauled up from a deep quarry by heavy machinery, and many times not at all. She frequently grabs a pencil to scrawl her reply on a sheet of paper, as writing has come back to her more quickly than speaking, and seeing a word on paper can help her say it. When she needs to tell me a number, she uses her fingers. Mostly, though, she communicates with her face, having perfected a vast vocabulary of nods and shakes of the head and cues with her eyes, eyebrows, and the corners of her mouth.
Through it all, that perpetual look of surprise is present: when she uses a word correctly or when the wrong one comes out, when her listeners seem to understand or when they are perplexed by what she has said. It must be terrifying to have such a vital, instinctual faculty suddenly rendered inaccessible from what might be referred to as your brain’s hard disk. And it must be maddening to have retained the acuity of thought to understand the nature of the handicap, yet to be capable of making only plodding progress at regaining skills that were once second nature. “Imagine the blow to your self-esteem,” says Walker-Batson, an intense, voluble woman who heads TWU’s efforts in researching new remedies for aphasia and other post-stroke impairments. “It’s a very isolating disorder. For many years the belief was that there really wasn’t much you could do about it except attempt to reteach the language, as with a child. But now we know different. Most of it’s still in there. It’s getting to it that’s the problem.”
To that end, Walker-Batson says she and her colleagues in TWU’s Department of Communication Sciences and Disorders (in collaboration with the University of Texas Southwestern Medical Center in Dallas and Baylor College of Medicine in Houston) have been conducting a series of experiments aimed at “accessing the brain’s parallel circuitry” for language. The most promising of them—and the first of its kind in the nation—involved dosing post-stroke aphasic patients with dextroamphetamine (similar to the Dexedrine some of us took in college to study all night for exams) during the first few weeks of their physical and speech therapies. Firm conclusions can’t be drawn yet, but initial tests on patients like Carol have suggested that the drug’s excitatory effect on brain neurons, when combined with rigorous therapy, helps restore some basic language skills. “It may not seem like much to the layman,” says Walker-Batson, “but Carol’s increased comprehension and three-word sentences are monumental progress compared with where she came from.”
Indeed, when Carol had her stroke on February 20, 1995, she was at ground zero, Walker-Batson recalls, and it came completely out of the blue: Like many Americans who suffer an attack of this underpublicized killer and disabler—the third leading cause of death in the U.S. and the number one cause of adult disability—Carol had been pronounced healthy during her last physical and felt no symptoms of the impending vascular disruption other than a little queasiness the afternoon before. When her husband, Karl, found her in a lifeless, fetal heap on the bedroom floor that night, the idea that it could be a stroke never entered his mind. “I thought maybe it was some kind of bizarre food poisoning,” he says. The EMS paramedics never mentioned a stroke when they rushed Carol to Columbia Medical City Hospital, and the doctor who first examined her, Karl says, “either didn’t think it was a stroke or wasn’t telling me. They kept saying her vitals were fine, but she wasn’t fine. She wasn’t talking.”
It wasn’t until early the next morning, after a doctor from the Koschaks’ primary-care group arrived on the scene, that Karl was told the bad news: Carol had had a massive stroke and was lucky to be alive. Her paralysis was severe; on a motor skills and strength test administered by Patricia Smith at Southwestern Medical Center, Carol scored only eight out of a possible one hundred on the right side of her body. The diagnosis of her aphasia was equally grim. While the majority of aphasic patients suffer either problems with expression accompanied by relatively good comprehension (known as Broca’s aphasia) or vice versa (Wernicke’s aphasia), some, like Carol, get a dose of both, called global aphasia. Carol also apparently suffered from a couple of related but neurologically discrete dysfunctions: apraxia, the inability to articulate words and sounds; and anomia, difficulty naming simple, familiar objects. “I was flabbergasted,” Karl says.
For more than a week following the stroke, Carol lay hopelessly mute in her hospital bed. “The only thing alive about her was her eyes,” Karl says. “She couldn’t talk, and I couldn’t tell what she understood. But I could see the lights were on behind her eyes.” Then, on the twelfth day, Carol made her first sounds: They were mere utterances, baby noises like eee and ooh, but “they had the melody and inflection of language,” Karl says. “It was like she thought they were words.” Today Carol confirms with a vigorous nod that she believed she was saying words and sentences and was miffed that Karl and their two children didn’t understand what she was “saying.” This is what aphasiologists like Walker-Batson mean when they say the “inner voice” of aphasic patients can be just fine, even as the “outer voice” is spouting gibberish.
Carol’s apraxia of speech was so extreme, in fact, that she had great difficulty making the most basic consonant and vowel sounds. “She had trouble with her own name and mine,” says Karl. “She couldn’t do a hard c or k sound.” At TWU speech therapist Sandra Curtis first attacked her pronunciation problems with mind-numbing daily drills. Viewing a videotape of Carol’s therapy, one can’t help but be struck by the cruelty of the affliction: Here’s a middle-aged college graduate and mother of two, once an avid reader and accomplished pianist, struggling harder than a child might to make simple hard c, p, and th sounds.
Still, her progress exceeded her doctors’ rather bleak expectations. Aided by the experimental dextroamphetamine dosing in her physical therapy at the Baylor Institute for Rehabilitation, Carol was able to stand in a little more than a month and walk with a cane shortly thereafter, though doctors had initially warned Karl that she might be confined to a wheelchair for a long time. And certain aspects of her aphasia seemed to recede: Even as her ability to express language remained infantile, her comprehension returned, and her writing skills showed themselves to be even more intact than her aural language skills.
Researchers are confounded by such contradictions and anomalies, which are typical in people with aphasia. For one thing, neurologists have known for some time that a certain percentage of damaged neurons “rebound” naturally, having been merely “stunned” by the swelling after a stroke or head trauma rather than destroyed. But which neurons relating to which links in the complex language comprehension and production chain can’t be predicted. Although age and attitude are the critical factors in recovery, aphasia experts are beginning to realize that the extent of a patient’s facility with language before a brain injury can play a role in his rehabilitation. Carol, for one, was unable to name various parts of her body for months, even though she could explain the function of, say, her hand. “If you had several numbers up on a board and asked her to point to the number three, she could do it right off,” Karl says. “But if you reversed the process, and you pointed to the number three and asked what it was, she’d draw a blank.”
To combat problems of this sort, Walker-Batson and her colleagues at TWU have rethought the way they treat aphasia. In the days when language was thought to be the product of a single center in the brain—the hard disk—a stroke or head trauma was believed to more or less delete the disk, so speech therapists literally retaught aphasic patients pronunciation, vocabulary, grammar, syntax, connotation, and denotation. But since researchers discovered that language comprehension and expression are, in fact, a complex collaboration of many regions of the brain, they’ve focused on retrieving them from an unknown number of alternative circuits. The guiding principle of aphasia therapy has thus become reaccessing and reconnecting, not just reeducation; the goal is to restore enough fluency for the patient to lead a productive existence. If such circuits are brought forward and cobbled together, a person with aphasia can regain his language skills more quickly and completely. “You have to think of language as an orchestra,” says Walker-Batson. “If the first violins get knocked out for some reason, the second violins still know the melody.” As a tool in this process, the results of the drug studies are promising, she adds: “They suggest that redundant circuits can be manipulated forward using medications along with therapy.”
Even though the dextroamphetamine accelerates the recovery rate—Walker-Batson’s study has shown that it increased the speed with which aphasic patients reach certain levels of verbal ability by up to three months—aphasia rehabilitation is long, arduous, and expensive. Carol receives thirteen hours of speech therapy a week at TWU and at the University of Texas at Dallas. The TWU sessions are inexpensive because they are experimental and therapy is mostly led by graduate students, but private speech therapy can run as much as $180 an hour—with no guarantee that insurance will cover it. “All in all, my insurance policy did us pretty well,” says Karl, who is an American Airlines pilot. “It covered all the major hospital charges and her initial physical and speech therapy. But there’s a cap on it, and they want to see improvement. That’s not always easy to show with aphasia.” And, of course, like most chronic disabilities, the infirmity exacts a toll that goes far beyond dollars and cents. “Carol needs someone with her nearly all the time,” Karl says. When he is unable to be there, Carol’s chief nurse is their 24-year-old daughter, Courtney, who has become so involved with her mother’s rehabilitation that she has entered the TWU graduate program in speech therapy and wants to be an aphasia therapist. “I regard that as one of the silver linings,” Karl says.
These days, the Koschaks will take good news wherever they can find it. Like most aphasic patients, Carol will never completely reacquire her facility with language; the goal of her therapy is to reconstruct enough of it that she can resume an independent, productive life. But from what I saw, she’s well on her way. Late in our interview, I asked her if, given her improvement from functional mute to merely “language challenged,” she had more hope for the future. She furrowed her brow in consternation. Finally, that look of joyous, childlike surprise filled her eyes. My use of the word “hope” had inadvertently triggered something deep in the hardware.
“I—am—open!” she said emphatically.
“Open?” I asked.
“Op-ing,” her speech therapist interjected. “Now, Carol, give us the h sound that’s there. That’s the word you mean.”
Carol took a deep breath and with great labor, but obvious enthusiasm, repeated, “I—am—hhh—oping!”