Life after head injury
Life after Head Injury
Steven is one of the lucky ones. Threeyears after the accident that damaged his brain, things are looking up. He has just completed a trade school program and is looking for a job repairing office machines. He is a good-looking, nattily dressed young man. He lives with his mother but is capable of living on his own. He dates. He goes to the movies. He has a future.
Steven (names of all head-injury victims have beenchanged) is lucky because he got into a good rehabilitation program. Each year, 300,000 Americans survive injuries that cause significant brain damage. Perhaps 15,000 get into rehabilitation programs specifically designed to meet their needs.
Those needs are considerable. The brain is involved inone way or another in everything we do, so damage to the brain can interfere with any kind of behavior. Physical disabilities such as paralysis and deafness are often less troublesome than impairments in intellectual and social behavior.
Nearly all brain-injured people have problems with concentrationand memory. Many complain that they think more slowly than before their injury. They often have difficulty reasoning and solving problems. Academic skills also suffer. A former college student may be unable to read a newspaper, write a letter or balance a checkbook. IQ’s usually decline, but the scores are not very revealing. One person with an IQ of 85 may be able to carry on an intelligent conversation. Another with the same IQ may be unable to follow even simple instructions.
Some of the greatest difficulties involvesocial behavior. Head-injury victims are often irritable, quarrelsome, anxious, easily depressed and excitable. The slightest variation in routine –eating dinner in the kitchen instead of the dining room, for example–may confuse and agitate them. Under stress, they sometimes laugh uncontrollably or become verbally abusive. They may make lewd or tactless remarks and be unaware that they have given offense. They often place heavy demands upon their families yet remain oblivious to the inconvenience they cause.
Head injury can also cause a kind ofinertia. Its victims fail to initiate activities or carry them through to completion. They may spend long hours watching television or sitting idly in a chair. Asked to perform some simple task, such as washing dishes, they begin, only to sit down after a moment and stare into space.
The disabling effect of symptomssuch as these is well illustrated by Steven’s case, despite the fact that he suffered only mild brain damage. Steven was a construction worker whose troubles started when he fell from a scaffold. He didn’t seem to be seriously injured, but he did not return to work even when he appeared capable of doing so. It was just as well he did not return to his job. His thoughts tended to wander, he didn’t show much interest in anything and he had problems orienting himself to his surroundings –all dangerous liabilities when on a scaffold.
Steven was also easily confused andfound it hard to do more than one thing at a time. He could read and understand the manual for a new camera, for example, and he could examine the camera. But he had trouble going back and forth between the two the way most people do in learning to use a new device.
Steven had trouble relating to others.He displayed what psychologists call “flat affect’; that is, his face showed little emotion. He also had difficulty following conversations, at least partly because he heard noises. “I would be trying to talk to someone,’ he explains, “and I’d be hearing these sounds in my head. I couldn’t follow the conversation because I would be listening to these noises.’
This difficulty led Steven to withdraw.He became depressed and fell into the habit of spending most of his day alone, reading his Bible and listening to the radio. Finally neuropsychological testing revealed that his difficulties were due to mild brain damage. Without testing, Steven’s problems could easily have gone unrecognized and untreated. As it was, two years went by before his rehabilitation began.
People with even more serious headinjuries often receive little or no rehabilitative therapy. Once a head-injury victim is medically stable, he (at least two out of three are male) is discharged from the hospital. If he has a physical disability he may receive physical therapy. If he has an obvious language problem, he might see a speech therapist once or twice a week for several months. But too often there is no systematic effort to identify and remedy other, more subtle deficits. Typically the neurologist and neurosurgeon advise the family that the only thing to do is wait. The natural healing process, they explain, will result in a certain amount of “spontaneous recovery.’ Often family members go home believing that if they are patient, if they pray hard, their loved one will fully recover from the injury.
It doesn’t happen. There is a certainamount of spontaneous recovery for several months following injury. But after this, further improvement requires vigorous intervention. All too often victims spend the rest of their lives wasting away, useless to themselves and a burden to their families.
Fortunately, the wait-and-see philosophyis changing. In the mid 1970s, two clinical neuropsychologists, Yehuda Ben-Yishay and Leonard Diller, set out to develop techniques for treating head-injury victims. Their program differed from past efforts in that it was intense and systematic, lasted many months and included training in intellectual and social skills. Others imitated their model, with the result that whereas in 1980 there were fewer than 50 head-injury treatment centers in the United States, today there are more than 400.
Those programs vary widely, butmost offer a blend of rehabilitative techniques, including physical therapy, speech therapy, psychotherapy, group and family counseling and other traditional treatments. Increasingly, however, programs rely upon three relatively new techniques: cognitive training, functional-skills training and environmental management.
In cognitive training, the idea is tocorrect deficits in attention, memory, problem solving and the like by teaching these skills directly. This is done by having clients perform tasks that require one skill. To improve memory, for example, a client might repeat a list of names read to him by the therapist. The therapist may also suggest strategies clients can use to make the task easier, such as imagining a singing bell to remember the name Belsinger. The therapist begins with tasks clients are sure to perform successfully. As they progress, the tasks become more challenging. Throughout training, the therapist provides heavy doses of praise for success and hard work.
While cognitive training is still providedby a therapist on an individual or group basis, the computer has all but replaced these older methods. One of the first to use computers in this way was William Lynch, a clinical neuropsychologist at the Veterans Administration Medical Center in Palo Alto, California. Lynch discovered the potential of computers almost by accident. He made an Atari computer and some games available to head-injured clients as recreation, often using access to the computer as a reward for success on other tasks. The clients enjoyed playing Pong, Concentration, Breakout and other games, but when Lynch saw that they were getting more out of the games than fun, he made them part of the therapy program.
As other therapists put the computerto work, programs written especially for the head-injured began to appear. Odie Bracy, a clinical neuropsychologist and director of the NeuroScience Center in Indianapolis, has written nearly 200 of them, including City Map. In this program the computer monitor first displays a simple map of a city. The task is to plan a route to get from point A to point B. After several seconds the larger map disappears and only the immediate neighborhood is visible. As the client moves toward point B, the area visible to him or her changes, just as it would for someone walking along a street. If the client can’t remember which way to go, he or she can call up the entire map for reference and try again. The principal purpose of City Map is to improve the ability to orient oneself in space; other programs focus on attention, memory, problem solving and other skills.
A second kind of treatment for thehead-injured is called functional-skills training. At the Drucker Brain Injury Center, part of Philadelphia’s Moss Rehabilitation Hospital, the principal goal is to teach clients to perform various “routines.’ The morning routine, for example, consists of arising, using the toilet, washing, shaving, grooming and dressing. Routines fall into nine categories: self-care, housekeeping, leisure, business and finance, consumer activities, community affairs, school, work and personal events (such as family gatherings).
When clients enter the Drucker program,the staff interviews them and their families to identify gaps between how clients used to spend their time and how they currently spend it. The staff then attempts to narrow that gap. If, for example, a person used to prepare meals but is now unable to do so, a member of the staff watches as he or she attempts the task and notes where difficulties arise. Then the staff works on correcting those deficiencies. This would involve supervised practice at cooking and might include instruction in strategies aimed at overcoming problems. If a client forgets to add the salt called for by a recipe, for instance, the staff might advise checking off each ingredient as it is added to the mixture.
Whenever possible, the staff tries totrain the client in a work routine. Before her head injury, Margie was a journalist. Though her physical handicaps greatly reduce her mobility, the staff hopes that she will recover enough of her skills to obtain employment, though not necessarily the same work she did before her injury. Her rehabilitation therefore includes daily work on writing. When I met her she was laboring, with the help of her therapist, to improve the organization of a paragraph she had written. Only a few weeks before, however, she could barely write a topic sentence for a paragraph someone else had written.
Most functional skills are taught ina social context. A therapist is usually there offering guidance, feedback and moral support, and other head-injured people are often present as well. At Drucker, clients have a group discussion of current events, and some programs offer a good deal of functional-skills training in a classroom-like format. Thus, instruction in social skills goes hand in hand with functional-skills training.
The idea behind a third kind of treatment,environmental management, is to minimize the effects of a person’s limitations by modifying the surroundings. Simply reducing the amount of stimulation (noise, the comings and goings of visitors), for example, can reduce confusion and agitation. Signs and arrows posted on walls help head-injured people find their way around the treatment center. A sign in the bathroom reminds them to flush the toilet after using it.
When a head-injured person leavesthe treatment facility, the staff works with the family to make similar helpful changes in the home. Sticking to a daily routine–meals at the same time and in the same location, for example –can help. A clinical psychologist who suffered a head injury found that having a system of knotted ropes installed above his bed meant he could get up in the morning without his wife’s assistance. “This gave me a great psychological lift,’ he writes, “and spurred me on to other steps to independence.’
Edward Peck, a clinical neuropsychologistin private practice in Richmond, Virginia, likes to say that you must “play to the strengths’ of the brain-injured individual. He cites the case of a young mother with severe memory problems. Taking care of the baby more or less on her own was very important to her. The trouble was that she might think she had changed or fed the baby when she hadn’t. Her strength was that she was very responsive to reminders. Told that it was time to feed the baby, she did so immediately and efficiently. Peck’s solution was to have her wear a wristwatch with an easily set alarm. Then they worked out a schedule of all the things she was to do during the day. Now, when she arises in the morning she sets the alarm to go off in 15 minutes. When it does, she checks her schedule to see what she is supposed to be doing at that moment. If it is 8 a.m., it is time to feed the baby. She then resets the alarm for her next task and feeds the baby.
Advances in cognitive training,functional-skills training, environmental management and other techniques almost certainly make today’s head-injury programs much more effective than past efforts. Even in the best of programs, however, progress is often slow. Most head-injured people have intellectual deficits that make learning difficult. As a result, it may take hundreds of repetitions to learn a simple act. And often what is learned in training does not carry over into other situations. An improvement in performance on the City Map computer program, for example, may not help clients use a map to find their way around a real neighborhood.
Daniel Keating, a clinical neuropsychologistat Drucker, explains that it is often necessary to teach a skill in many different situations before clients are able to use it in new situations. “You may have to teach them how to use the bus to get to the clinic, then to get home, then to get to the town park, then to visit relatives and so on. It’s a laborious process, but eventually they may be able to use the bus to reach new destinations on their own.’ There are no easy answers, no miracles.
Despite the shortage of miracles,many head-injury victims make remarkable progress. A teenager who was told by his physician that he would never work now runs a business of his own employing four people. A physician who was shot in the head has returned to his duties in the emergency room. A former ballerina who was “really blasted’ following a traffic accident is now working on a graduate degree in learning disabilities.
Even remarkable recoveries likethese, however, are seldom complete. The teenager who went on to start his own business may still have difficulty remembering. The physician may perform well in ER, yet have difficulty finding his way from one part of the hospital to another. The former ballerina may succeed in getting her degree, but she will probably work harder than if she had never had that auto accident. Even those with relatively mild injuries who seem to make full recoveries usually have lingering deficiencies. The motto of the National Head Injury Foundation, an informational and lobbying group, reminds its members that “life after head injury may never be the same.’ Still, those who get into a good rehabilitation program often make substantial progress.
The problem is, most head-injuryvictims don’t receive the treatment they need. One reason is that there isn’t enough help to go around. Most of the 400 facilities offering treatment can take only a handful of new clients each year. Another reason people don’t get treatment is money. A residential treatment program can cost more than $10,000 a month. Nonresidential day treatment is about $3,000. Even seeing one therapist one hour a day, five days a week, can run up a bill of $1,200 a month. Steven’s rehabilitation took eight months and cost $20,000, and his injuries were considered mild. A person with moderate brain damage could easily spend more than $100,000. For a severely injured person, a lifetime of treatment and supervision could cost several times that amount.
Insurance helps, but the young, unmarriedmen who are the most likely to be injured often have no insurance. And some insurance companies balk at paying bills for certain kinds of treatment. Physical therapy for someone with partial paralysis and speech therapy for someone with a language problem are considered reasonable expenses. But treatment aimed at correcting a memory problem or inappropriate social behavior, or counseling to help the family deal with behavior problems may not be covered.
The result is that thousands of peoplenever receive the kind of prolonged, intensive training they require. “The stories are heartrending,’ says Harvey Jacobs, a behavioral psychologist at the University of California Medical Center in Los Angeles. “You talk to head-injured people and you find that many are isolated, they spend their days watching TV, sleeping, staring into space. And they’re getting little or no help. Then you talk to their families and you find that they’re suffering as much as the injured person. And they’re not getting much help either.’
Muriel Lezak, a clinical neuropsychologistat Oregon Health Sciences University in Portland, is convinced that the problem is of such proportions that only major political action will suffice. “We have got to do a better job of providing help. That means, among other things, government support for residential treatment facilities, day treatment facilities, supervised living facilities, vocational training, sheltered workshops and family counseling.’
Lezak believes that some countriesare doing a much better job than the United States. Sheldon Berrol, a physician and chief of rehabilitation medicine at San Francisco General Hospital, agrees. He has visited many rehabilitation programs around the world and is particularly impressed by the Israeli approach. “They are very systematic about identifying and treating head-injured people. The injured person goes from the hospital into a specialized rehabilitation center and from there to a supervised workshop, day treatment program or whatever is appropriate. In most countries, including the United States, treatment is more haphazard, and people fall through the cracks.’
Ironically, doing a better job ofmeeting the needs of the head-injured would probably mean a substantial savings in tax dollars. At present, most Americans who suffer moderate to severe head injury (and many with mild head injuries) remain economically dependent upon their families or public institutions. But with prolonged, intensive treatment, many of these people could support themselves. Rehabilitation experts at Good Samaritan Hospital in Puyallup, Washington, have estimated that if just 40 percent of those treated returned to gainful employment, the savings in Social Security benefits and other forms of public assistance would more than pay for the rehabilitation.
There are, of course, benefits thatcannot be expressed in dollars. Advances in medicine mean that thousands of people who would have died from their head injuries a decade ago are now surviving. But without rehabilitative therapy, many of these survivors simply waste away at home, in nursing facilities or in the streets. It is becoming clear that saving a person from death is only half the battle.
One head-injury victim wrote of thework of rehabilitation therapists this way: “You are offering these people something more valuable than life. You are offering them the ability to live.’ You and I may not fully understand that statement, but Steven does. He is one of the lucky ones.
Photo: Learning to getfrom Point A to Point B on this computerized map may help brain-injured people find their way across town.
COPYRIGHT 1986 Sussex Publishers, Inc.
COPYRIGHT 2004 Gale Group