Articles

Functional Treatment Recommendations For Patients With Right Hemisphere, Nonverbal Deficits

Terry G. Shaw Kevin N. Groom



In attempting to understand the function and organization of the brain, it has become widely accepted that there are two qualitatively distinct cognitive and perceptual domains governed from different command posts on either side of the longitudinal fissure. Notwithstanding the fact that the hemispheres have far more in common than is generally recognized, the preeminence of the left hemisphere in verbal, logical, and sequential tasks has been widely recognized. Only recently have the "silent func­tions" of the right hemisphere been fully addressed in research and clinical practice. Moreover, as we gain a deeper under­standing of the range of functions in which the right hemi­sphere predominates. namely nonverbal visual spatial, and gestalt processing. it behooves us to dismiss the dominant! nondominant generalization as overly simplified. Although this line of reasoning was acceptable before right hemisphere func­tions were delineated, it now seems dubious to maintain that one side is more important to daily living than the other, or that persons suffering from right hemisphere pathology should con­sider tl1emselves fortunate that their left hemisphere was spared.

As Oliver Sacks (1985) stated only a decade ago, "Although right-hemisphere syndromes arc as common as left-hemisphere syndromes - why should they not be? - we will find a thousand descriptions of left-hemisphere syndromes in the neurological and neuropsychological literature for eve!)' Description of a right hemisphere syndrome". To be sure, right hemisphere syndromes have a full complement of sensory, motor, cognitive, and emo­tional sequelae with attendant implications that are no less dis­tressing and painf1:1to patient and family than left hemisphere injuries. While there is no plot to slight this group of patients, identification with right hemisphere impairn1ents may simply be more difficult for professionals and lay persons alike. For example, one may easily empathize with a person who has lost the ability to speak fluently, but may find it more difficult to empathize with a patient ·who despite intact vision has diffi­culty recognizing faces or finding his or her way around.

In recent years several authors have focused their attention on the diagnosis and treatment of right hemisphere dysfunc­tion. Among them Byron Rourke has demonstrated not only the existence of nonverbal learning disabilities in children with wide-ranging consequences for poor academic and social per-

Terry G. Shaw, PhD, ABPN, Director of Clinical Services, Comprehen­sive Community Rehabilitation Services, Associate Clinical Professor of Psychology, University of Tulsa. Kevin N. Groom, MA. Clinical Neurop­sychology Intern, Dept. of Psychiatry and Behavioral Sciences, Baylor College of Medicine, One Baylor Plaza, Houston, TX 77030.


formance but also has proffered a continuum of nonverbal pro­cessing deficits spanning a variety of disorders (Rourke, Young & Leenaars, 1989; Rourke, 1995). Likewise, speech patholo­gists are moving toward a less unilateral approach by including the full spectrum of communicative impairments. Furthermore, screening measures which focus on right hemisphere impair­ments, such as the Mini Inventory of Right Brain Injury and the Rehabilitation Evaluation of Communication Disorders in Right Hemisphere Dysfunction, are proliferating (Pimentel & Kingsbury, 1989; Burns, Halper & Mogil, 1985; Pizzamiglio, Judica, Rozzano & Zoccolotti, 1989). Neuropsychology in par­ticular has been criticized by Klonoff, Sheperd, O'Brien and Shiapello (1990) who argue that "standard neuropsychological tests and other measures of cognitive and speech function tend to underestimate the impact of right-hemisphere syndrome on a patient's judgment and social skills, relationship to the fam­ily system, ability to perform functional living activities, and ultimately the ability to return to productive work". However. there are signs that the assessment oriented approach of the young science of neuropsychology is evolving such that clinical neuropsychologist are now encouraged to transpose their test data into ecologically valid treatment plans as opposed to sim­ply diagnosing brain pathology.

Evidence that visuoperceptual and cognitive deficits can be functionally rehabilitated is accumulating, but there exists a need for novel approaches to the unique difficulties experienced by patients with unilateral, right hemisphere injury (Govier, Webster & Warner, 1986; Arcata, 1992). In this article, we propose several recommendations specifically designed for these patients across the following areas: visual-perceptual cogni­tion, time appreciation, mathematics. reading, memory, neglect, denial, emotional changes, and social skills. Some have been systematically tested in controlled settings, others have proven to be generally effective across a broad range of applications, and still others are based on theoretical models of brain func­tion. All things considered, we hope these recommendations will be a springboard for future investigation into their utility.

Visual Perceptual Cognition

Right hemisphere injury invariably results in some degree of impairment of visual perception or visual motor integration. Recent research suggests that right hemisphere mediated vi­sual-spatial skills are the best predictors of performance on ac­tivities of daily living (Richardson, Nadler & Malloy, 1995).

As a result. occupational therapy goals will generally focus on improving speed. accuracy. and sequencing of eye-hand coor­dination skills as they relate to activities of daily living such as hygiene, toileting, maintaining nutrition, shopping, and house­keeping. For higher functioning patients the impact of these skill deficits on return-to-work issues becomes the focus of treat­ment. This application usually requires job simulation, job site analysis, or work hardening, each of which would be helpful in determining the patient's capacity for work, endurance, the need to modify the work environment to ensure safety and efficiency or the need to shift careers if self-limiting deficits persist. If the job requires individuals to process complicated visual materi­als. assemble or disassemble complex objects. or rapidly per­form manual skills without the aid of vision (e.g., auto me­chanics). return to work may be difficult. Treatment should attempt to reduce the visual/nonverbal complexity of the work environment. If this accommodation is impracticable, the treat­ment goal should then shift to employing these individuals in a capacity where their job experience and wealth of job knowl­edge may be useful in a consultative or instructive manner.

'" .

Occupational and speech therapists should work conjointly

on the treatment goals by teaching verbal mediation strategies to help the patient utilize unimpaired. left hemisphere analytic skills by "talking his or her way through problems." Verbal mediation techniques can take on many permutations as natu­ral compensatory aides including: a) reading a list of instruc­tions: b) verbally memorizing a sequence of steps needed to solve problems: c) developing or referencing written organiza­tional strategies such as calendars. day planners. and steps; or d) developing strategies of self-talk conjunctive with an attempt to specify areas of functioning in which this procedure is more likely to be beneficial.

If visual perceptual processing skills have been compro­mised, the patient may also become more confused during peri­ods of low illumination such as evening or nighttime (i.e. sundowner effects) (Kaplan & Sadock, 1988; Rindlisbacher & Hopkins, 1992). In those instances, reducing the amount of visual clutter in the environment, raising ambient lighting, and appealing to other sensory modalities through activities such as conversation or music may serve to reduce confusion.

Although infrequently, these patients may report seeing "strange things." These misperceptions or illusions can resemble hallucinations but are seldom characteristic of the kind of psychotic thought content that accompanies severe psychiatric dis­turbance. These phenomena usually reflect impaired process-


ing in the visual-perceptual system. Rather than prematurely labeling the patient schizophrenic, reassure or calm the patient or family by minimizing the significance of the misperception. Rather than overreacting, it may also be appropriate to reframe the incident or to self-disclose (e.g., "My eyes play tricks on me sometimes too.") in an effort to provide reassurance.

Time Appreciation

The ability to accurately perceive the passage of time may be especially compromised by right hemisphere injury. Aware­ness of time of day as well as the ability to estimate elapsed time may be a1Iected. This problem may. in turn, lead the pa­tient to put his or her pajamas on too early in the day. repeti­tively ask about anticipated events, or consistently miss appoint­ments. These problems are fairly easily redressed by directing patients to clocks or watches with digital faces and AM/PM indicators. Consider posting itineraries or audible timers to signal certain events that patients have difficulty anticipating (e.g. "When the alarm goes off, it will be time for your visit with your family."). Time management problems may also manifest themselves as an inability to structure one's daily ex­istence. Rather than being able to rely on an internal sense of time, patients may dawdle, and accomplish little in the absence of external prodding. This inability to structure one's daily existence is usually best attended to by providing the individual with external verbal structure such as a daily written schedule, notebook, calendar, etc.

Mathematics

Right hemisphere injuries can result in impaired math skills as well (Ardila & Rosselli, 1994). These difficulties are most often encountered when patients engage in mental arithmetic as manifested by a tendency to lose track of numbers in their heads and commit "carry-over" errors (e.g., confusing columns of numbers). These problems have implications for checkbook skills and financial independence which in turn gives rise to questions regarding financial supervision. Financial guardian­ship can sometimes be avoided when sufficient safeguards are instituted, such as the regular use of a calculator, the avoidance of large cash purchases, and the presence of family members willing to review or reconcile checkbook registers at the end of each month.


Reading

Reading skills may be compromised in right hemisphere injuries by virtue of the following: a) an inability to consis­tently begin reading at the left hand margin; b) difficulty mov­ing down the page smoothly without skipping lines; or c) prob­lems comprehending what is read (Bakker, 1994). A tendency to ignore the left-sided margin sometimes improves spontane­ously with time (and errors), but is best rectified by placing a brightly colored mark for visual stimulation or strip of Velcro for tactile stimulation. outside the left-hand column of each page. Then it is only a matter of training the patient to scan to the left with his or her eyes or hand until encountering the mark before starting to read the next line of text. Skipping lines while read­ing is easily redressed by placing a straight edge underneath the line. Finally. reading comprehension, independent of the ability to identify words, may be compromised by virtue of the patient's difficulty developing a subliminal picture of content (e.g., a green field with ashen trees). In instances where read­ing skills are required for job or school success, consultation with a speech pathologist or educational psychologist can gen­erate a list of programs or techniques to facilitate reading com­prehension (e.g. SQ3R or PQRST) Giles & Morgan, 1989).

Memory

Memory impairments resulting from right hemisphere in­juries can manifest themselves in several ways. One common symptom is topographical disorientation while traveling in less familiar environments. If visual-spatial skills are impaired, patients may be forced to navigate their environment in funda­mentally different ways. For example. as opposed to relying on an '"internal map" or images of familiar buildings or landmarks. instruct patients to verbally mediate environments by remem­bering or writing down a series of left and right turns, using identifiable verbal descriptions. street numbers, or objects (e.g., "Turn left at the sears building. Go to Michigan Avenue. Turn right into the second driveway on my right. Go upstairs to Apartment 2C on the second floor.").

Memory failures may also result in misplaced personal items. Consequently. patients may conclude that someone has been moving things around or hiding things from them. Little is gained by arguing or proclaiming one's innocence, much less berating the patient for this tendency. It is not only acceptable to help search for misplaced items but, more importantly, assist the patient in developing a "place for everything and every­thing in its place" routine. This practice helps maintain pre­dictability in the environment and reduce the frequency of mis­placed items.

This group of patients also seems particularly prone to con­fabulation and may therefore "make things up" that are without factual basis. Their stories may not necessarily rise from a faulty memory but simply represent the patient's tendency to juxta­pose unrelated memories together. Do not be alarmed or feel that you need to correct the patient every time his or her story is in error. Although redirecting or clarifying important facts is certainly appropriate, constantly pointing out mistakes is coun­terproductive and can foster a pattern of unresolved arguments. Because the success of therapy depends on a healthy patient-


clinician relationship, unnecessary arguments are ill-advised (Prigatano, Klonoff and O'Brien, 1994). Instead, choose to confront inaccurate memories on the basis of safety (e.g., "You did not take your medicine with lunch.") as opposed to accu­racy (e.g., "You had peas not carrots for lunch.")

Memory failures may also occur in the following forms: a) not recognizing familiar family members (e.g., Capgras syn­drome) (Ellis, 1994); b) seemingly recognizing everyone or every1hing as familiar (e.g .fausse reconnaissez, reduplicative paramnesia (Burns et aI., 1985; Kaplan & Sadock, 1988); or c) difficulty learning new faces (i.e., prosopagnosia) (Bums et aI, 1985). These memory failures are fairly rare and are to some degree a product of impaired visual perception and memory. Teaching patients to verbally mediate these problems as well can assuage the deficit to some degree. For example, verbal mediation is particularly instrumental for learning new faces (e.g., "My speech therapist has a mustache and red hair."). Unfortunately, because the other two examples can develop into fixed ideas, hey are more difficult to treat and can be terribly distressing to family members. In those instances, try to redi­rect the patient to some identifiable aspect of his or her identity and then proceed to issues more central to treatment. There will usually be more significant treatment issues over which to argue rather than whether or not the patient actually "grew up next door" or whether his or her family has been "replaced by impostors". Again, choose battlegrounds wisely.

Neglect

Depending on location of the injury, right hemisphere im­pairment often results in a tendency for a patient to ignore or neglect the left side of his or her body or the left side of his or her environment. This mayor may not be accompanied by con­comitant loss of vision to the left side. but it is the neglect. as opposed to visual loss, that tends to be a critical treatment is­sue. In extreme cases the patient may deny the existence of the left side of his or her body (e.g., alien limb syndrome) (Sacks, 1985). In milder forms, the patient may simply be unaware of stimuli on the left side of his or her body or space. Unfortu­nately, motor skills on the left side of the patient's body are often weakened by the same injury that produced the neglect. As a result, the patient may at times try to get up and walk only to fall because of weakness in the left leg or because the left foot is tangled up in the bedsheets or the wheelchair. Obviously, this symptom poses safety risks and necessitates greater super­vision. In the absence of direct supervision, a posey vest for the wheelchair or an alarm system on the bed may be required in the interest of safety to keep the patient the patient from injur­ing himself or herself further. This is acceptable only if the restraints are designed to defeat the impulsivity of his or her action and are not otherwise employed as a "management" plan. The patient's safety is important, but using restraint simply to control the patient is a violation of his or her rights. Fortu­nately, these kinds of safety concerns are usually restricted to the acute stages of recovery and begin to improve fairy early as patients eventually profit from such experiences and learn cau­tion.

Ignoring the left side of space may pose particular prob­lems when providing treatment as well. For example, a patient


may simply ignore those individuals standing on his or her left side including what the person is saying. The patient may also complain that people "sneak up on me" from the left side. In these instances, try to approach the patient from, and position yourself within. his or her right visual field. Ambulatory pa­tients with left neglect may also drift to the left while walking down a hall or accidentally bump into things on his or her left side. After a few bruises to the left shoulder, the patient may eventually learn to compensate for this tendency, but he or she remains at risk for similar problems thereafter. As a result, an inherent need exists to provide patients with as many trials as possible without jeopardizing their safety. One technique en­tails training the patient to regularly navigate a "soft" maze composed of Styrofoam pylons or uprights. With sufficient tri­als in a safe environment, the patient should be able to develop the necessary compensatory skills without additional risk.

Potentially, the most significant treatment issue associated with neglect is driving. Operating a motor vehicle is truly a rite-of-passage in twentieth century North America. Revoking driving privileges is a serious undertaking and can be perceived as an assault on one's sense of freedom. Unfortunately, the patient who suffers from left-sided neglect or inattention can generally expect an increased frequency of collisions with other vehicles that approach from his or her left side. Due to the neglect. the patient may simply pull out in front of an oncom­ing vehicle. The consequences for such mistakes are obvious. To counter caregivers' concerns. patients may promise to "al­ways look to the left" while driving. However, driving is largely automatic and nonconscious (Lewicki, 1986). It is all too easy to lapse into old driving habits and in that instance, the patient's next oversight may be fatal. The patient with marked left ne­glect will often find this obstacle too difficult to overcome. Despite the fact that driving is viewed as an individual right, patient safety is of greater importance than their opinion of thera­pists. doctors. and family members who restricting their driv­ing privileges.

As a general recommendation, if a patient's deficits are not overly limiting, he or she should go back through some type of driving accreditation process prior to resuming operation of a motor vehicle. This is particularly true for patients who have sustained right hemisphere injury. The driving exam conducted by the occupational therapist is a valuable screening device but is not sufficient for this purpose. The rationale behind this suggestion is based upon future liability issues. If a patient is involved in another car accident in the future, the question will likely arise as to whether or not he or she was capable of safely operating a vehicle in light of his or her original injury. Satis­factory completion of a driving program is the simplest and safest defense against this criticism.

Denial

Injury to the right hemisphere may lead to a number of alterations in the patient's personality One of the most prob­lematic is organic denial (i.e., anosognosia, anosodiaphoria) (Burns et al, 1985). Similar to the aforementioned neglect prob­lem where patients are unable to perceive their deficits, they may then deny even obvious disabilities and contend they are "back to their old selves." When thus confronted with their


deficits, they often react negatively. Because their deficits are usually masked by the presence of intact language skills, the nonverbal or visual-spatial impairments that they deny may go unnoticed by casual observers. Families in particular already want the patient to "get well" and if the patient "talks okay and looks okay" it can be difficult to convince families (and insur­ance companies) of the need to treat the less obvious nonverbal deficits. In far too many instances, patients have even been able to convince family members that they have fully recovered only to manifest deficits in unsafe ways after leaving treatment. Therefore, it is crucial that family members and treatment teams work in concern to avoid problems associated with patient de­nial and premature termination of therapy. In the early stages of treatment, family members and the treating team should for­mulate specific criteria and objective behavioral goals that the patient must attain in order to dispense with treatment, super­vision, and oversight (e.g., Ability to demonstrate safety, accu­racy and independence on specific tasks). When these objec­tive signposts are reached, all can agree on the level of recov­ery, including the patient.

Related to denial is the problem of attributing blame. Al­most without exception, patients with right hemisphere injury externalize blame. They can identify a plethora of external causes and explanations for the problems or failures, but rarely take responsibility for their mistakes. This is due in pan to an inability to perceive their limitations which likely gave rise to the original problem. Whenever possible, videotape the pa­tients and ask them to assume the role of an independent ob­server. Encourage them to use their language skills to analyze the situation more objectively. As a therapist or family mem­ber, it is also important to avoid taking their blaming person­ally. If you are the beneficiary of their criticism, rather than debating your innocence in the matter. offer a brief explanation (e.g., "I ha\"e a different view of this than you, and I believe we can simply agree to disagree on this issue.") and move on. Good behavior management plans are often helpful with regard to objectively establishing consequences for inappropriate argu­ing or blaming.

Emotional Changes

Especially early in the recovery process, patients with right hemisphere injury may "look" depressed or "sound" sad (Bradvik, Dravins, Holtas & Rosen, 1991). This is usually a reflection of diminished ability to express emotions by voice, facial expression, and gesture (i.e., aprosodia) (Sohlberg & Mateer, 1989). Attempts to cheer them up or medicate their presumed depression usually have minimal impact on their overt presentation, and they continue to be emotionally flat irrespec­tive of intervention. Fortunately, emotional responsivity im­proves with time such that aggressive intervention for this prob­lem may not always be warranted without evidence of syndromal depression (e.g., insomnia, appetite loss, self-deprecatory state­ments). This is not to suggest that patients with non-verbal deficits do not experience depressive symptoms. In fact, these patients at times develop major depression and some have even committed suicide. Generally speaking, however, their depres­sion develops later in the recovery process by virtue of repeated occupational or social failures. While some initial features of


depression may be present, the origin is not necessarily psychi­atric and may not require pharmacologic intervention in the absence of more substantial symptoms than a flat affect.

In contrast to aprosodia. some patients with right hemi­sphere deficits may also exhibit a form of secondary mania as exemplified by elated or irritable mood. hyperactivity, decreased need for sleep, pacing. and a heightened sense of arousal (Evans. Byerly & Grecr, 1995; Shennan, Shaw & Glidden, 1994; Nelson, Mitrushina, Satz, Sowa & Cohen, 1993). At first glance these responses also appear psychiatric in nature, and indeed physi­cal and chemical restraint has historically been used to control this problem. Now that the negative effects of chemical re­straint are better appreciated. kinder and gentler forms of be­havioral and pharmacological intervention have been offered (Zasler. 1992). For example. rather than medicating the manic symptomatology. it is often appropriate to allow anxious pa­tients to walk or pace in a controlled area until they wear them­selves down. When agitation arises from over stimulation, a quiet, non-demanding environment or relaxation therapy pro­vides a calming effect. Activating antidepressants and serontonergic agents also seem to hold promise for the treat­ment of secondary mania (Zasler, 1992), but consultation with a rehabilitation physician is suggested for more definitive medi­cal management.

Finally, patients with right hemisphere injury may adopt a laissezjaire attitude toward their deficits (Sherman et al, 1993:

Gianotti. 1972). Overtly. this appears preferable to depression. and it certainly helps the patient to maintain a positive attitude. Nevertheless. one must not be fooled by the fact that the patient's attitude is probably more positive than his ore her situation warrants due to the aforementioned organic denial. Avoid allowing his or her lightheartedness to circumvent the need for treatment and attainment of vocational. social. and indepen­dent living goals. At the same time, rather than attempting to reconcile the patient with reality by constantly reminding him or her of problems, therapists should only draw attention to problems which are foci of ongoing therapy. Otherwise, accept his or her lightheartedness and be heartened that the patient is not depressed.

Social Skills

Social communication relies more heavily on nonverbal cues than it does on verbal content (Mehrabian, 1972). Prag­matic skills, such as tone of voice, hand gestures, and facial expressions, are just some of the important components of so­cial communication (Sohlberg & Mateer, 1989). Unfortunately, patients with right hemisphere injury often fail to process this kind of information adequately (Gapes & Negartanam, 1989). Consequently, their social skills are viewed as awkward or lack­ing. Receptively, patients may have difficulty decoding impor­tant nonverbal signals such as deep sighs, frowns, hands on hips, or a raised voice. As a result, they may be oblivious to others' anger or frustration. It is often necessary to teach pa­tients to verbalize others' facial expressions and gestures in order to interpret feeling states. Family members and therapists should also feel free to tell the patient exactly how they arc feeling at times when he or she makes them uncomfortable. In some cases, patients with right hemisphere deficits may have difficulty per-


ceiving how their behavior affects others. They may even have difficulty acknowledging and respecting others' personal space to the degree that they stand too close in conversations. In this instance, kindly stop the conversation, infom1 them of your uneasiness, and ask them to step back before continuing. To ignore their deficit-based social faux pas is to imply that their impaired social skills are acceptable.

In conversation, these patients may talk incessantly or domi­nate the discussion (Kolb & Taylor, 1981). Feel free to institute turn taking strategies during unstructured conversations and teach them to monitor and modify their tendency to interrupt. Further, the content of their speech may be unabashed, border­ing on inappropriate. For example, they may make sexually suggestive comments. In these instances, it is essential to redi­rect or correct them as it relates to your willingness to maintain the conversation or continue the relationship. Explain how their behavior affects you (e.g., "Your comments make me uneasy, and if you persist I'll need to end this conversation."). Re­member, your ability to provide essential social feedback is one of the primary avenues by which the patient can begin to re­develop lost empathy skills and acquire respect of the rights of others. If repeatedly confronted with blanket social rejection without explanation, patients may eventually withdraw from social contact altogether. In lieu of this outcome, therapists should shape their social behavior through honest feedback Videotaping conversations is also a helpful activity as it can provide patients the opportunity to "See yourself as others see you." Finally. peer group therapy and social skills training are instrumental forms of supplemental intervention for these prob­lems.

Conclusion

It is our position that many of the everyday problems asso­ciated with right hemisphere damage are at least as serious as those associated with left hemisphere damage. The goal of this article is to offer several treatment suggestions for the unique problems associated with right hemisphere brain injury. Reha­bilitation professionals have a responsibility to promote the full­est recovery possible, with these suggestions, perhaps that task will be easier.

Because each patient brings with him or her unique pat­tern of neuropsychological strengths and weaknesses, these recommendations should not be applied indiscriminately. Rarely would a patient with right hemisphere injury display all or even most of these deficits at one time. Thus, there is a need to be selective in developing an appropriate treatment plan. Before implementing these strategies, therapists should establish a pic­ture of the patient's premorbid personality, family dynamics, social milieu, and cultural mores. Therapists can then evaluate resources of the treating team and initiate appropriate interven­tions within this context.

ACKNOWLEDGEMENTS

We thank Karen Prescott, MA, CCC, and Tod Eames, JD, MA, for their valuable assistance in preparation of this manu­script.


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THE ELUSIVE POST CONCUSSIVE SYNDROME:

TERRY G. SHAW, Ph.D., ABPN

People involved in an accident in which they sustain a seemingly minor injury to the head (ranging from whiplash to concussion) may subsequently develop a variety of emotional and physical problems. For example, they may complain of memory problems, headache, insomnia, blurred vision, lapses in concentration, ringing in the ears, irritability, anxiety, depression, fatigue, dizziness, confusion and/or sensitivity to light and noise. The regularity with which this symptom picture occurs following trauma has led to the development and subsequent use of Post Concussive Syndrome (PCS) as an explanatory medical condition.

Unfortunately a diagnosis of PCS can be misleading. For example, some clinicians believe that PCS symptoms following any kind of an accident reflect underlying brain injury. While it is true that most if not all patients who do suffer a mild traumatic brain injury or concussion will go on to display many PCS symptoms, the reverse is not always true. That is, the presence of PCS symptoms after a trauma is not necessarily a sign that the brain has been injured. In fact, recent studies reveal that PCS symptoms are equally present in a variety of non-brain damaged populations ranging from college students undergoing final exams to patients involved in litigation for non-injury related reasons. The research goes on to suggest that stress (or more importantly how people respond to stress) plays a more critical role in the development and persistence of PCS symptoms following a trauma.

Survey of the literature currently suggests that any one of five possible disorders typically associated with trauma can give rise to symptoms that overlap the PCS symptom picture. These include; 1) mild TBI with poor psychological adjustment; 2) Stress-related reactions such as Post Traumatic Stress Disorder; 3) Somatoform or “Conversion” disorders sometimes seen in “eggshell” patients; 4) Musculo-ligamentous or cervical-adnexal injuries that result in chronic pain syndrome; and 5) outright fabrication or malingering of post injury symptoms for secondary gain. Given the overlap between these presentations, it is difficult to make these important diagnostic distinctions without a thorough assessment. In fact many physicians request neuropsychological testing to tease apart these underlying causes. Although a unique “neuropsychological signature” may not exist for each of these disorders, careful analysis of clinical history, presentation, and selected test data can usually provide clinical differentiation. Furthermore teasing apart these issues becomes critical to providing the correct form of treatment. With this in mind, the following discussion is offered with respect to each of the 5 different disorders.

Mild Traumatic Brain Injury with Poor Psychological Adjustment

When a person receives a blow to the head sufficient to result in a loss of consciousness and/or confusion with amnesia for the event, a mild traumatic brain injury has by definition occurred. In the field of sports medicine, these mild traumatic brain injuries (MTBI) are usually subdivided further into Grade I, Grade II and Grade III concussions and, much of our understanding about this type of injury as well as the typical recovery process has been derived from studying athletes who sustain sports related concussions. Those results suggest that these patients will almost always develop a number of PCS-like symptoms (of varying intensity) but the literature is also clear in indicating that only in rare instances do these symptoms last longer than 6 months. When someone with a history of a mild TBI continues to be symptomatic beyond 6 months, chances are other factors are perpetuating their symptoms. One of the more common reactions that causes symptoms to persistent is poor psychologic adjustment. This type of emotional reaction appears to be neither willful nor calculated and patients often don’t understand why they continue to have problems when their physician has reassured them that nothing is wrong. They sometimes begin to believe that the Doctors aren’t telling them everything and may actually begin to think that they are “going crazy”. As the resulting depression and anxiety begin to emerge, cognitive deficits that were originally caused by the injury now become perpetuated by the negative emotional reactions that persist long after any structural or biochemical changes have resolved. Furthermore, as the anxiety and depression deepen, cognitive deficits mount, which in turn can lead to a never ending cycle of greater and greater impairment.

The reason why some patients who suffer a mild TBI recover without any problems while others suffer from problems for many months seems to be related to the psychological makeup of the individual who was injured. Those at risk for poor psychological adjustment typically are “overachievers” who are unaccustomed to not being able to overcome their problems, have a prior history of trauma, suffer from a pre-injury mood disorder, have a history of substance abuse, or possessed marginal coping skills to begin with. There is even recent evidence that the same genetics which increases one’s risk for Alzheimer’s Disease (APOe allele) may also lead to a more difficult and protracted recovery. In any event, the type of “person” who sustains a mild traumatic brain injury may be as important to the outcome as the accident itself.

Patients suffering from poor psychological adjustment to mild TBI generally respond positively to educational interventions as well as specific therapies designed to help them regain their emotional control and learn more effective coping strategies. Short term trials of anti-anxiety and anti-depressant medications may also prove beneficial. Assuming that they were identified early enough to avoid the development of chronic emotional problems, these interventions generally lead to a fairly quick recovery.

Stress Related Reactions

Sometimes when individuals are involved in a potentially life threatening traumatic event, their initial fear reaction sets into a motion a cascade of stress related responses in the body known as the Fight or Flight Syndrome. Often times, several days after exposure these patients may them begin to exhibit an array of anxiety based symptoms which overlap typical PCS phenomena. Their problems, however, have nothing to do with an actual brain injury. Instead, this represents a “learned” fear response in their bodies that subsequently connects their initial physiologic stress reaction to anything that resembles or was associated with the original event. This “learned anxiety reaction” is like a tape that gets played over and over in the subconscious mind and their initial fear response becomes easily rekindled by simply being exposed to stimuli or circumstances that resembled the events of the initial injury. This reaction is typically known as Post Traumatic Stress Disorder or PTSD.

Patients with PTSD may experience flashbacks of the trauma during their waking state. They may also experience nightmares when they are asleep or wake up with night-sweats. Because stress reactions are physically uncomfortable, they also begin to avoid anything that has to potential to trigger a reaction, including a reluctance to even talk about the accident, go by the scene of the accident, or even go out in public. As a result, they frequently become withdrawn and reluctant to resume previously pleasurable activities.

PTSD seems to exert its effects on the nervous system through biochemical changes associated with their deep-seated anxiety. These physiologic changes in turn can interfere with normal attention and memory skills. Because PTSD often alters the way a person reacts to situations, some clinicians misdiagnose the problem as a TBI when in fact their symptoms arise from an entirely different source. Furthermore treatment approaches for mild TBI are not usually effective for patients suffering PTSD. In fact, interventions for PTSD patients must be specifically tailored to address the underlying anxiety and fear.

Treatment of PTSD is fairly effective if provided early and by a therapist who specializes in treating the disorder (ex., “psychotraumatologist”). Traditional psychotherapy is generally ineffective with this population and may actually cause a worsening of the condition. Medication at times can also be of help but is rarely effective by itself.

Cervical-Adnexal Injuries

Sometimes when someone is involved in an accident, the primary injury is restricted to damage to the ligaments, muscles and connective tissue of the neck, back, and upper extremities (eg. Cervical-Adnexal or Musculoligamentous Injury). This type of injury frequently sets into motion a dysfunctional pain response where the initial pain severely limits the person’s ability to function. Pain also seems to have a special connection with negative emotions and, as pain persists (and limitations accumulate) depression and anxiety become more prominent. Cognitive impairments may also emerge in concert with these negative emotional reactions and this can then lead to further increases in tension and stress, the net effect of which is to exacerbate the perception and experience of pain (e.g., psychogenic pain). If untreated, these patients often spiral downward as limitations accumulate and the symptom picture begins to share many similarities with PCS but the etiology occurs as a result of chronic pain rather than brain injury.

Diagnosis is usually made by x-rays, scans and electrophysiological data designed to reveal structural injury. Unfortunately, soft tissue injuries to the muscles or ligaments are sometimes hard to identify and the true nature of their injury may remain unappreciated until positive medical findings emerge. In the absence of positive findings, not only may the extent of their problems be under appreciated, these patients are often misdiagnosed as suffering from PCS. And while a diagnostic label of PCS may seem to fit their complaints, rarely does it address the underlying cause of their difficulties. A thorough psychological assessment can however offer some benefit in this regard.

Treatment of these patients usually includes massage, heat, manipulation and pharmacologic control for pain and inflammation. More involved treatment may include injections, use of electrical instruments designed to block or control pain and possibly even referral for participation in a formal pain clinic or outpatient pain program. Sometimes, depending upon the extent of the injury, corrective surgery is required. Psychotherapy designed to teach relaxation skills and better pain management techniques can also be of benefit, especially as patients become increasingly distraught and --psychotropic medication can be of great assistance in restoring emotional balance and control.

Somatoform Disorders

For reasons that are not always clear, when certain individuals are injured in an accident, they develop secondary sensory, motor and/or cognitive problems that persist in the absence of objective clinical evidence of injury. In Somatoform disorders, their symptoms often don’t correspond to the known anatomy of the nervous system or are so pervasive that they tend to involve virtually every organ system. In a small number of patients, classic “conversion” symptoms develop in which patients aren’t the slightest bit concerned with their injury related impairments or losses. More often than not, however, Somatoform patients are distressed by their perceived losses as well as the inability of Doctors to explain and/or effectively treat their symptoms.

Freudian interpretations of this disorder suggest that the patient has “converted” pre-existing stress and conflict into physical symptoms as a psychological maneuver designed to resolve unrelated conflicts or problems that predated the injury. Behavioral theories contend that the appearance of injury related deficits results in the patient being able to “escape” pre-existing conflict or stress and the symptoms persist simply because allowing the person to continue to avoid dealing with the underlying problems is itself reinforcing. There is even the suggestion that certain individuals were not be genetically “put together well” from the outset and are therefore at higher risk for a developing Somatoform Disorder. Irrespective of cause, patients who develop Somatoform Disorders following a trauma are seen as “eggshell” patients that were unconsciously at risk for a poor response to trauma because of pre-existing events or factors. A history of adverse childhood experiences seems to be at least one of those factors but individuals with a past history of just about any form of victimization seem to be at higher risk.

Diagnosis is usually achieved through a process of elimination (e.g., ruling out other explanations) coupled with psychological testing designed to identify underlying issues that might be perpetuating the disorder. Treatment usually then requires psychologic or psychiatric intervention and may necessitate pharmacologic treatment as well. The focus of treatment sometimes involves helping the person become more aware of their underlying emotional conflicts and teaching them new (and healthier) coping skills to resolve internal strife and conflict. Many patients with Somatoform Disorder, however,

are not open to a psychological explanation for their symptoms. In that instance, helping them understand that their psychological reaction at least exacerbates the underlying source of their problem can opens the door to more effective treatment.

Malingering Disorder

Sometimes an individual is involved in an accident and for personal reasons, they choose to fabricate cognitive and/or physical deficits to the point that they become more impaired than would ordinarily be expected. Their behavior is invariably motivated by secondary gain which is usually (but not necessarily) financial and their symptoms often persist despite the best treatment. These individuals may have a pre-existing history of poor adjustment to society (school, work, family) and there may even be a history of prior injury claims (personal injury, workers comp, etc.). Unfortunately their complaints also frequently overlap with PCS symptoms while they likely have no disability at all (or at least they are not as limited as they present to be).

Diagnostically, these patients have become easier to identify for the trained examiner because of their inability to consistently feign meaningful deficits. Clinicians have also become quite adept at identifying these individuals with specific tests designed to measure the honesty of their effort during the assessment. As a result, patients who malinger are generally unable to fool a well prepared examiner.

Treatment of malingering is a difficult issue to address. After all, malingering is a psychiatric disorder and these patients could conceivably profit from some type of intervention. Few clinicians, however, are willing to treat these individuals and even fewer insurance companies are willing to fund such endeavors, primarily because there is nothing wrong in the first place. Furthermore, there is no incentive for these patients to quit feigning deficits. If anything, the incentive is attached to continuing impairments. As a result, once a clear diagnosis of malingering is made, these patients are often dismissed.

Co-Morbidity

The question ultimately arises as to whether or not it is possible to suffer two or more of the above noted injuries during the same accident. Certainly, people with mild TBI or PTSD can (and often do) sustain additional cervical-adnexal injuries and have chronic pain but it at least helps to tease apart these disorders and treat each condition separately. In fact, many of the veterans returning from Iraq and Afghanistan are subject to polytrauma (ex. IED related TBI, PTSD and physical injury) and may be suffering from more than one condition. There is some controversy in the literature regarding the co-occurrence of mild TBI and PTSD. In the rare instance that a patient suffers both a TBI and PTSD from the same injury, it is usually in response to sequential events: one event causing TBI and a second causing PTSD (or vice versa). In that circumstance, treatment should also be sequential. Treat the PTSD first and then address the TBI problems later if they still persist. Otherwise, PTSD and TBI are often exclusive of each other. In either case, if provided adequate treatment they can usually recover.

In summary, labeling a patient with PCS is similar to telling a sick person they have some type of an infection. What really matters are the specifics of the illness. Therein lies the direction to treatment. With careful evaluation, it is possible to make these distinctions and therefore, render better care. Collectively, PCS may be a useful diagnostic category but it’s existence as a unique disorder turns out to be mostly myth.

The Second Victims of TBI:

Dealing with Family Issues

Terry G. Shaw, Ph.D.

As a professional who has worked with TBI survi­vors for a number of years and, more importantly, as a parent of a recent head injury survivor, I feel a need to address the plight of families as they unwantingly become the 'second victims' of TBI. Characterizing family members as 'second victims' is not a new concept. The term has been used quite frequently (and appropriately) to describe the problems faced by family members left with the responsibility of caring for an elderly spouse or parent.

My focus on families, however, is not meant to take the spotlight away from the survivor. The intent is simply to inform others about the existence of more than one spotlight. You see, there is no such thing as a patient within the family. When tragedy strikes, the whole family becomes the patient. In my own instance 'that call' in the middle of the night wounded all of us. My daughter is a vital part of my family and we all became survivors of TBI that night. My daughter lost some of her skills and abilities. We, as family members, lost some of our hopes and dreams that we had for her. In both cases, we had to grieve, eventually accept those losses and move on (albeit down new paths). I could belabor the issue further but the point is made.

Families are the second victims of TBI an

d are just as much in need of treatment as the survivor. Until families of TBI survivors are acknowledged and their needs addressed, any treatment rendered solely to the survivor is potentially substandard. In that regard, I can identify at least five issues that families need help with in order to navigate the uncharted waters of recovery post TBI.

The first major hurdle families are confronted with is the profound lack of knowledge about TBI. With rare exception, there is very little information available to the family at the time when they probably need it the most.


Not that they would initially have the ability to compre-

hend all of it, just having access to that knowledge is still power. Even though the injury - to my daughter was emotionally very painful to me, the knowledge that I had

about TBI from my years of experience gave me the power to deal with much of the initial confusion about ­what had happened and what was to come. It gave me that sense of control that is otherwise so easily threatened and challenged by the unknown.

If families in general were somehow able to acquire some level of knowledge, I think that most of them could better handle the adversity, even if only by virtue of knowing what to expect. People can handle almost anything better if they know what's coming. It is the unknown that is unnerving. Unfortunately, for all but a small percentage of families, prior knowledge about TBI is either nonexistent or exists in such mythological forms as portrayed in soap operas. The message for families and providers then is quite clear; educate, educate, educate from day one in ICU. But, don't quit there. Many choices will obviously be made down the road. It would be nice to think that most of those were informed choices.

The second family issue involves their emotional reactions to the trauma. Knowledge is indeed power (and that certainly applies to TBI) but, even in this field, there are no answers to some questions. For example, despite my knowledge and experience, I still found myself asking the unanswerable question 'Why?" Not finding a ready made answer I vacillated between externalizing blame (I'll sue those S.O.B.'s) and internalizing blame (Did I, as a father, in some way fail to teach my child a crucial lesson?). The anger and guilt that I felt were likely the norm rather than the exception. In fact, the guilt that I felt was probably nothing more than the anger turned inward and both were bred out of pain and hurt. These are crucial emotions that families must deal with following


 

trauma. What families need to know is that there is absolutely nothing wrong with these feelings. In fact, they are quite natural responses to pain because anger is a by-product of being hurt. While their feelings are okay, families need to know that they are responsible for how they handle those feelings. They can beat other people up (i.e., I'll sue), they can beat themselves up (i.e., misplaced guilt) or they can talk about those feelings.

The first two alternatives often get in the way of dealing more effectively with the recovery of the survi­vor. As a result, professionals should help families talk about their feelings and work through those initial emo­tional traumas so that they can get on with the process of getting better. As an aside, I never did answer the "Why?" question. I have, however, resolved the issue by simply accepting the fact that bad things happen to good people. Perhaps families simply need to know this. If they could eventually let go of the 'why' question then it might just make it easier for them to move on to the next hurdle, 'what to do?'

In most instances, getting better after TBI is a given and some amount of recovery is almost always assured. The third issue for families then is how to speed up this otherwise lengthy process. This often translates into providing as much therapy as the survivor (and our insurance coverage) can stand. Overdosing on therapy seems to be our way to speed up recovery and., in most cases, providing the 'right' amount of therapy is a familial responsibility. We simply want our survivor back to their old self as fast as possible, be they on a fast boat to recovery or a 'slow one.' No matter, the goal is to speed up the damn boat. Unfortunately, we sometimes don't see the hidden traps that are inherent in service delivery. For example, families eventually learn two painful lessons; 1) a constant diet of anything is bad and, more importantly, 2) there aren't enough services or funds to fuel the boat for as long as it will take to get to the other side. Due to a lack of services some family members become consumed with just finding any resource, however small. And, while essential services are needed, there is a limit. We labor under the assumption that if one hour of treatment is good, a whole day of it would be great. It's inherently hard for us to settle for 'what's available,' because that somehow seems to reflect badly on our ability as family members to care for the survivor. If it would speed up the recovery and rehabilitation, we would want services 24


hours a day, not just when and where we could find them. We never realize that, even if we could arrange it, a constant diet of anything is potentially toxic.

As professionals, help us dispel our false beliefs about the value of constant therapy and help us get used to the lack of sufficient resources. Help us also to advo­cate for essential services that aren't there and teach us to make the best of what we are able to find. Let us know from the outset that the need for services will always outstrip the availability of resources without necessarily jeopardizing quality of life.

Beyond the notion of treatment, there is the fourth issue of control. You must understand that, if you give us no control over a situation, we will simply take our own controls, for being in control is part of how we survive the ordeal. When it comes to treating the survivor, if you don't empower us as a part of the treatment team and give us a role to play, we'll find our own role. Unfortunately, that role (which may be borne out of emotional turmoil and ignorance) may actually run counter to your overall plans. But don't just give us a role; give us the skills so that we may both be agents of change. To ignore our need to help is to ask us to sit back and do absolutely nothing. That, we cannot nor will not do. As if that weren't reason enough, it's also important to realize that you will only see a glimpse of the recovery process. We, as family mem­bers, will be there for the long haul so give us some tools to take with us. In so doing, help us also, to understand that quality of life for the TBI survivor (and family) is not always tied to the work that goes on inside those little cubicles that you call treatment rooms. Remind us that there is a time to work and a time to play and help us to see the value of play (for them and for us). Help us understand and furthermore prescribe for us 'valuable' play. Let us see a larger world and., as family members, teach us to use the world of work and the world of play as true learning environments. After all, when all services run out (and you know they will) that's what we are left with, the world of work and play. All we need is a little direction, training, support and knowledge.

Finally, help us to eventually learn to take care of ourselves. However, allow us to do so within our own time frame, not yours. Don't tell us to "Go home, there's nothing else to do here." When I originally heard that, I thought to myself, "Does this person not have a loved


 

one?" Listen folks, a constant vigil early on is just as necessary as drawing breath. Besides, what else could we reasonably be expected to do at such a crucial time in our lives. But, just as the constant vigil is necessary at first, a return to normalcy is required in the end and in that sense of normalcy (as best as I can remember) we all took care of ourselves and each other. I think that was a sign of a healthy family; that all members are equally important. Unfortunately, with the survivor of TBI, there is a tendency to have that person's need prevail above all others. It's as though the sun rises and sets on survivor issues.

Please help us to eventually place the needs of ourselves and other family members back into perspec­tive. The issue has not so much to do with the need to change or even the direction of change but the 'rate of change.' How then do we, as family members, begin to let go of the ever present needs of the survivor and turn our attention to our needs as well as the needs of others around us? To do so too fast is to potentially place the survivor at higher risk for additional failure. To do so at a somewhat slower pace is to be labeled as overprotective and/or over controlling (as if that made us bad folk).

In reality, what we need is help in knowing when and in what areas to let go. Don't confuse this with the control issues that we addressed above. Letting go is a caring issue. In some ways it is a selfish issue because for us, as family members, to let go again entails a certain amount of risk. Quite frankly, letting my daughter go again places me at additional risk because I fear my heart can't take another one of those calls in the middle of the night. But, my difficulty with letting her go is a caring issue. I struggle with her departure because I do care. If I didn't care, her coming and going would have no effect on me. That same level of care ultimately did force me to let go again even though I dreaded it and even though it led to additional risks and complications. But, it had to be done and letting go (a second time) was made possible only because I had at least part of my old life back.

As family members, help us then to regain our sense of self. Let us know that it is okay to be a little selfish and to be little overprotective all at the same time but don't shame us for our altruism. Chart out the course for us so that we may know where we are going and let us not be frightened by the potential for calamity in the future. Don't let fear and uncertainties rule our lives and don't


 

allow us to rule the survivor's life. Acknowledge our agenda just as one acknowledges the agenda of the survivor.

In summing up, I don't pretend that these issues are an exhaustive list of family issues of staggering propor­tion or eternal significance. I do, however, hope that they speak a voice that is often only faintly heard. Families are the second victims of TBI and family members do need treatment within their own timeframe and at their own level of acceptance if they are ever going to be able to minimize the emotional impact of what has otherwise become known as the 'worst day of their life.'

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