Psychological and Neurobehavioral Disorders in MS A Health-Oriented, Rehabilitative Perspective In this article, the authors discuss the classification, recognition, and rehabilitation team management ofpsychological and neurobehavioral disorders in multiple sclerosis (MS), emphasizing throughout their view that from the psychological standpoint, MS is preeminently a disorder of the patient's self or identity. Disorders of the process of normal adjustment, disorders of organization and control (including disorders of affect and of cognition), and disorders of personality functioning are considered in turn. Finally, the authors discuss a model for the role of comprehensive, inpatient rehabilitation team treatment in addressing MS-related neurobehavioral disorders.

The authors wish to thank Jim Grigsby, PhD, for his insightful comments and helpful reading of the manuscript. We also acknowledge Susan Ayarbe, PhD, Patricia Daily, MSW, Caryl Hearst, PsyD, Elizabeth Semones, RN, MS, Linda Coulthard-Morris, MA, and the multidisciplinary staff of our MS rehabilitation teams, who contributed to the development of these ideas in practice.

Jay Schneiders, PhD Director of Clinical Psychology and Neuropsychology Colorado Neurological Institute Epilepsy Center and CNI Sleep Disorders Center Englewood, CO; and Assistant Clinical Professor of P~ychology (in Psychiatry) School of Medicine University of Colorado Health Sciences Center Denver, CO

Nancy Cobble, MD Medical Director of Brain Injury Rehabilitation Services Spalding Rehabilitation Hospital Denver, CO; and Member of Colorado Neurological Institute Englewood, CO

Multiple sclerosis (MS) is a debilitating and generally progressive neurologic disease caused by scattered inflammatory and demyelinating lesions of the central nervous system (eNS). The potentially devastating sequelae cross all functional areas: cognitive, emotional, and perceptual, as well as motor, somatosensory, urogenital, interpersonal, and vocational. Issues surrounding behavioral disorders and syndromes in MS range from personality problems to cognitive disorders; from structurally based neuropsychological changes to iatrogenically based acute psychiatric conditions. The behavioral disorders that commonly affect MS patients and are typically seen in the rehabilitation setting are listed in Table 1. The clinical and nosological controversies surrounding many of them still require much ongoing research to clarifY and determine a final taxonomy. Despite a still less-than-unified and sometimes less-thanrigorous or shared approach, a number of reviews have been recently offered on MS and affective NeuroRehabil 1993; 3(2):26-39 Copyright © 1993 by Andover Medical.

Psychological and Neurobehavioral Disorders in MS

disorders,I-3 MS and neuropsychological/cognitive disorders,4,5 MS and family functioning or care-giver issues, 6 MS rehabilitation 7,8 and the broader questions or issues surrounding the potential neuropathologic basis of MS-related psychopathology. 9 Our thrust here will be slightly different from that of the traditional paper on psychiatric syndromes in MS. We discuss the neurobehavioral changes in MS patients from a particular perspective, namely, that MS is profoundly a disorder of a person's identity or sense of self. Utilizing such a perspective, we emphasize that the crucial psychological character of the sequelae of the disease has to do with its enormous, pervasive, and oftentimes mercurial effects on the larger system of the patient's self and identify. Issues of behavior, maladjustment, or coping all are most usefully understood in this importantly different context. Once the behavioral syndromes or psychological problems central to MS have been understood in terms of larger (self) "system functions," the hitherto mostly neglected set of issues having to do with the health care provider's role in, transTable 1.

sclerosis.

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action with, and reaction to such psychological issues and changes must be considered. These issues have usually been considered mostly in terms of the psychosocial, psychological, or psychiatric members of the interdisciplinary team, even in more systems-oriented papers. lO However, precisely owing to the self-disorder nature of the cumulative effects of this serious disease, we will be emphasizing the important, even critical psychological role all team members have to play in MS rehabilitation and treatment, regardless of the technical aim and disciplinary specialty of the particular provider. Three major categories are evident when viewing the behavioral disorders that commonly present in MS: (1) disorders of adjustment; (2) disorders of organization and control of behavior, which are probably biologically driven; and (3) disorders of personality function. We will also briefly mention the psychological side effects of high-dose steroids, a common medical intervention for MS exacerbations.

Neurobehavioral disorders in multiple

Disorders of the process of normal adjustment Disorders of organization and control Neurobehavioral disorders of affect Disorders of disinhibited affect Psuedobulbar affect Euphoria Eutonia (Steroid-induced iatrogenic hypomanic, manic, and depressive disorders) Neurobehavioral disorders of cognition Subcortical dementia Disorders of disinhibited behavior Disorders of verbal pragmatics The hypersexuality syndrome Disorders of personality functioning Disorders of symptom incongruency Disorders of manipulative behavior The Yes-But or Help-Rejecting Complainer behavior pattern The Old Trouper behavior pattern The neurologically driven borderline personality disorder

DISORDERS OF ADJUSTMENT Repeatedly in the literature, discussions center on "functional reactions" versus "organic" disorders of mood and behavior in MS patients. We are inclined toward the view that both sets of factors are present in virtually all of the varying psychological reactions and disorders that obtain in MS. From the larger vantage point of a clinical orientation to therapeutics, thinking too much along the traditional "either/or" lines of "organic versus functional" seems both limiting of practice as well as conceptually shortsighted and naive. I I While the practicing clinician must eventually develop particular hypotheses to 'guide and structure treatment, here we enjoy the luxury of written discussion to argue for an approach that is more broadly systems oriented while remaining rigorous and scientific. Therefore, instead of discussing issues of biologic versus psychological etiology, we are instead guided by the general premise that all

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complex behavior and experience is importantly both organic and functional. Hence it follows that disorders of adjustment may be described as more neurologically driven or more psychologically driven, but in fact are actually, importantly always both.

Disorders of the Process of Normal Adjustment Conceptualizations of the normal adjustment process can lead to more or less helpful and therapeutic clinical practices and attitudes. The model of adjustment probably most often referred to by clinicians writing about and treating MS patients is Elizabeth Kiibler-Ross's model of the stages of grief and mourning for death and other monumental loss.12 Kiibler-Ross believed that normal individuals gradually work through a series of stages, most often presented as shock, denial, anger, bargaining, depression, and, finally, acceptance. However, just what constitutes normal adjustment is not as obvious or simple as it might first appear, especially for people with MS. The very nature of the disease process works against any kind of linear solution to adjustment crises: the illness is enormously variable in its expression and course, it frequently hits at formative adult developmental periods and interrupts various self~consolidating processes important to adult identity formation and security,13,14 and it frequently remits and relapses unpredictably. It readily can be seen that adjustment strategies and issues need to be rethought in terms of long-term (lifelong), ongoing process models, rather than simply using an acute, working-through-crisis approach. In our experience, MS patients are commonly labeled as having disorders of adjustment. They are frequently felt to be "stuck" in the denial or anger phases of the above model and are judged not appropriately to have achieved acceptance. In recent years, however, some important questions have been raised as to the universality and comprehensiveness of such a model. 15 In reality, we find that relatively few MS patients psychologically follow an adjustment process in as simple, linear, or straightforward fashion as Kiibler-Ross's model is often taken to suggest. However, because it is such a widely held and popular model, patients

often feel (and caregivers often see them as) abnormal and pathological when assessed in terms of the model's expectations. ''I'm in 'denial,' I guess!" one dejected patient declared recently, when her husband was upset that she hadn't managed to "get over" her diagnosis since "it has already been more than a year." Denial, when applied to MS patients, is frequently a problematic term. Patients who long for a cure to their MS, who "hope it will just go away someday; that I'll wake up and it will be gone!" are rarely manifesting clinical denial. (Defined in rigorous psychological terms, denial always means denial of some reality operating as an unconscious, self-protective strategy. It does not mean simply not wanting to look at something unpleasant. Suppression may be the more precise term here, as it refers to an act of will whereby something unpleasant or painful is consciously set aside.) MS patients usually realize they have the illness, even if they hope the tricky and probablistic diagnosis is wrong; and they usually understand and accept (sometimes too realistically) its possible sequelae. But they hate it, fear it, and strongly wish it were otherwise. Of course, it is MS itself that makes denial so complicated. Early in the diagnostic process, patients are often given a host of alternative explanations for their vague and varying symptoms, leading naturally to the hope that the current explanation (MS) might also be wrong. Also, the frequently relapsing-remitting. character of early MS contributes to confusion and difficulty in accepting the diagnosis: The symptoms do go away; patients do get better; doctors, nurses, or therapists frequently do not predict short-term matters correctly. In such a context, the absence of some degree of questioning the diagnosis would seem more worrisome than the reverse. It is often unsettling for clinicians as symptom treaters to hear such sentiments voiced so plainly: We are not certain how to enter into those conversations constructively and certainly not comfortably- What should we support? How should we respond? How much of our own painful, sad, or depressing personal experience do we voice to them directly at such times? How do we work with someone who declines our help because "Soon I'll

Psychological and Neurobehavioral Disorders in MS

be better and won't need it"? How do we help someone look only a little at a time when it is too painful or frightening to look all at once? These are central and difficult questions for all of us in MS rehabilitation. Anger is another problem for the prevailing model. Patients, family members, and clinicians often diagnose an adjustment problem in persons who come in frustrated and outraged that they now have "new symptom X," especially when they have to this point done reasonably well in terms of their adjustment, perhaps even having finally appeared to have accepted their condition. Patients' rage is difficult for most health care providers not only because we often feel helpless and guilty ourselves in the face of such suffering and erratic symptomatology that MS can cause, but also because it is natural for us unconsciously to fear that this rage will be turned toward us for being "inadequate" help and thus perhaps perceived as unresponsive to our patients. Family members often feel the same way. However, if caregivers have such trouble with a patient's anger that it is too quickly labeled pathological, then MS patients must carry another burden besides their illness. While there are disorders that involve clearly aberrant display and experience of anger, these can be diagnosed and distinguished from the type of anger referred to here, just as psychotic denial can be distinguished from its range of more appropriate or normal variants. For example, we find that pathologic anger tends to be labile, unfocused, and/or mercurial. It tends not to be responsive to realistic comfort and available supports, tends not to change into congruent and appropriate expressions of sadness, fear, or determination (i.e., focused life activity) in the face of reasonable interpersonal assistance and intervention. Adjustment, then, is not the absence of certain feelings because they have been worked through in a prior stage. It does not mean not having any particular set of feelings, such as anger, fear, or moments of depression, and it does not mean having reached some point of acceptance whereby some idealized robustness or resilience protects one from experiencing the pain of progressive losses or constraints over time. Rather, adjustmmt is the ability of patients adaptively to reorganize their

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sense of self over time in the face of an ongoing and continual process of change and alteration in the selfs functional components. For this reason, a less linear model of adjustment is called for, a more cyclic, ongoing process model. Such a model would not predict some set emotional outcome that patients would look to achieve once and for all, as if adjustment were a linear act of traveling a path of stages and arriving at the endpoint "acceptance." Instead, adjustment would be viewed always as adjustment to some new and sometimes temporary disordering of the self-its ability to mobilize, perceive, feel, think, express, manage affect, or connect with others. That is, healthy adjustment involves movement toward increasing transactions with the world and others, using preserved and reorganized capacities in new or different ways. It then becomes an intrinsic and cyclic aspect of the life process of adults in the world, and not a one-time psychological act in response to illness. As such, normal adjustment involves persons having the capacity to experience directly, openly, and fully the feelings that result from changes in their world; in their relationships; in their bodies; in their abilities; and in their hopes, wants, and expectations. The key would be that a person does not become lost in the more painful emotions (unable to move on in life), but, despite feeling real pain, would still be able to seek and cultivate positive experiences and feelings. In this context, our message of real hope and for progress in the face of the devastating neurological consequences of MS makes actual, practical sense: The self can perhaps be healed even if the body, the disease, and its symptoms cannot be cured.

DISORDERS OF ORGANIZATION AND CONTROL There are clusters of neurobehavioral phenomena that our MS patients seem to experience in distinctly different if not unique ways. These bear importantly on our rehabilitation strategies with them, transcending discipline or specific clinical role. For our purposes here, we will distinguish disorders of affect and disorders of cognition,

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which will include both the so-called subcortical dementia of MS, as well as other disorders of disinhibited behavior. These, however, all may be generally classified as disorders of organization and control.

Neurobehavioral Disorders of Affect It is important to reiterate that while it can be useful heuristically or clinically to distinguish neurologically driven from psychologically driven symptom states, all complex behavior involves both levels of function concomitantly. Even in the more neurologically driven affective states, there are important meanings to be addressed concerning changes in the patient's experience of self It is also important to remember that MS patients are otherwise typical people who happen to have MS. As such, they certainly manifest the entire spectrum of psychiatric, psychological, personality, and situationally reactive phenomena anyone else might. However, additional disorders of mood and affect appear with sufficient frequency to suggest that a neurologically driven component is part of the effects of the disease itself on the eNS. These include emotional lability or dysregulation; uncontrolled laughter and crying (emotional incontinence or pseudobulbar affect); hypomanic, manic, and acutely depressed states; euphoria (incongruent feelings of emotional well being); and eutonia (incongruent feelings ofphysical well being), although the prevalence ofeuphoria and eutonia in MS patients remains something of an open question. 16 Uncontrolled laughter and crying may be particularly troublesome for patients who find themselves with the outward display and expression of intense emotions that do not correspond to the nature and intensity of their actual inner feeling. This can obviously skew interpersonal communications on the nonverbal level and cause embarrassment for the patient and sometimes mistaken assumptions or misunderstandings in the listener. Severely affected MS patients often do not volunteer symptoms of this condition as a problem, but will recognize it emphatically when asked specifically whether their outward expression matches inward feeling and experience. Relatively small doses of a tricyclic

antidepressant 17 may be helpful in controlling such incongruent and overly intense emotional expression.

Neurobehavioral Disorders of Cognition: Subcortical Dementia The concept of subcortical dementia has been gaining popularity and acceptance in recent years, serving to distinguish a neuropsychological syndrome characterized in part by slow mental processing, poor mental organization, and cognitive inflexibility. IS These symptoms typically appear in the absence of symptoms like apraxias and agnosias, commonly characteristic of the cortical dementias. Furthermore, periventricular, lesionbased frontal lobe disconnection syndromes in MS may disrupt processes such as working memory, 19 executive control, and attention and concentration. Insightful self-monitoring, the tracking of subtle interpersonal processes, and the ability to generalize new behaviors or strategies in novel situations becomes difficult, if not impossible, in severe cases. For rehabilitation professionals, these patients' altered cognitive capacities can enormously complicate treatment. Later, we discuss the ways a coordinated team approach to these complex problems can nonetheless achieve a measure of success.

Disorders of Disinhibited Behavior We have observed several patterns of behavioral disinhibition that affect the rehabilitation and self-functioning of our MS patients with some regularity. These have both neurologic and psychological determinants in our view and, again, we wish to emphasize the recognition and care of patients with such problems, rather than etiologic issues. Disorders of verbal pragmatics. The functional disconnection of frontal lobe structures of control, regulation, and so on, from centers of emotion, speech production, and motor behavior, is an often-seen consequence of the MS disease process. MS patients with severe eNS compromise are frequently verbose and tangential, and seem unable appropriately to inhibit their sweeping verbal style. In addition, they may show a lack of awareness about social rules that guide normal

Psychological and Neurobehavioral Disorders in MS

conversation, such as appropriate turn taking. Similarly, severely affected MS patients frequently appear to be unaware of others' facial expressions or body language cues. They may continue to talk and ignore dramatic cues by their listeners, such as standing up to leave or actually backing out of a room to end a conversation. Such apparent social ineptitude probably is a result of frontal disinhibition (i.e., disconnection of executive and self-reflective brain centers) and thus represents a neurologically driven lack of awareness. Speech therapy directed toward relearning of pragmatic rules and toward working with cues from others can often help such patients. Discussion of the nature of this problem can also help caregivers feel more comfortable and effective with the patient. This can lead to more effective strategies fex managing such interactions than literal escape from a room by backing out of it mid-conversation. Hypersexuality syndrome. Disorders of interpersonal pragmatics in some ways reach their pinnacle of concern in the hypersexuality syndromes sometimes seen in cases of MS and which can be distinguished from bipolar variants in MS with their related, attendant symptoms. 20 Clinicians in MS rehabilitation often find themselves in the position of trying to assess the appropriateness and degree of impulsivity around sexually disinhibited behaviors in such patients. We have seen cases that led to trial and incarceration, as well as sexually transmitted diseases and unwanted pregnancies. In general, our culture is at best highly ambivalent about sexuality. While no firm guidelines can be offered for all cases of disinhibited sexuality, we find it critical to remember that such behaviors never can be understood or treated entirely from an "organic versus functional" model. Openness and willingness on the part of clinicians to examine our own feelings and attitudes about sexuality, identity, and relationships can be as crucial as pharmacologic or behavioral intervention in most helpfully assisting such patients, as these attitudes can influence our very choice of interventions. Finally, a specific issue arises around disinhibition and the not-uncommon occurrence wherein a patient is able to think and speak reasonably

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about safety or the appropriateness of his or her actions, and appears to understand in principle the need to alter or control behaviors in therapies. However, this patient, when away from the responsive external structure ofthe clinician-patient interaction, becomes unable to put such behavioral changes into practice. For example, a patient who continually disregards interpersonal boundaries and limits with other people by intruding into their conversations with others, or by touching them in unwanted or inappropriate ways, may respond in cognitive and psychological therapies in a manner that makes therapists feel good progress is being made. However, when out in the real world of relatively less structure and relatively more stimuli, the patient may revert quickly and consistently to the problematic behaviors, apparent insights in therapy notwithstanding. This failure to generalize in the face of apparent understanding confounds and unsettles the rehabilitation professional. One can feel caught in the bind of either not respecting patients' insistence that they understand what needs to be done or ignoring safety concerns if the protestations of understanding are taken at face value. We find that the optimal approach to such situations involves providing the patient with a clearly designated support person on the team (usually a psychological specialist, although any clinician with whom the person has a close, trusting relationship may function in this capacity). This clinician initially stands with the patient outside the confrontational or interpretive process and acts as an ego support during discussions of the problem by relevant team members (always done as sensitively and respectfully as possible). Later, after the problem has been initially faced, the designated clinician acts as a supportive carryover person not only to help the individual talk out feelings about interventions being made that she or he may resent or feel are unnecessary but also to help begin to develop a constructive, insightenhancing feedback loop out on the unit or in the world. This often can help the patient learn and accept the need for such structure in the context of a focused, ego-supportive and caring advocacy relationship.

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DISORDERS OF PERSONALITY FUNCTIONING

defenses against fear and pain do not become dangerously overwhelmed.

Disorders of Symptom Incongruency

Disorders of Manipulative Behavior

Most MS patients clearly, overtly, and unambiguously hate their symptoms, and when they tell us they would "do anything to get rid of them," we immediately understand this to be true. However, there is a subpopulation of patients who seem to "amplify," or "embellish" their symptomatology. These somatizing patients for some reason unconsciously amplify their symptoms. While there is some overlap of this category with the "HelpRejecting Complainer" or "Yes-But" person described below, we will try to separate the signal clinical issues and phenomena in our respective discussions. Patients who embellish are often referred to MS specialists or specialty centers by frustrated neurologists who don't really think that something more serious is actually going on beneath the surface of apparent MS levels of symptomatology to account fix the patient's intensified and surprising distress, but worry that perhaps they may be missing something. In our experience, such somatizing patients require intensive psychological evaluation, support, and intervention, often prior to the institution of an ongoing neurologic or rehabilitative treatment plan. For example, we sometimes have found buried issues of early child abuse to be fueling a later-emerging somatizing syndrome. In such cases, how the patient may be unconsciously experiencing the often all-toosimilar MS symptoms as dynamic recreation ofthe earlier trauma must be clearly understood if MS treatment is to proceed without certain serious problems. In all cases of somatization, however, rarely, if ever, does more simplistic, direct confrontation of such patients with the fact of their somatizing result in therapeutic change or resolution of their symptom complexes. Instead, the dynamic roots of the somatizing must first be discerned by the clinician, and this usually requires fairly subtle, supportive psychological work. These dynamic roots then can be built into a process of self~ understanding fiJr patients and can develop at a pace gradual enough so that their already fragile

Two m~jor manipulative behavioral patterns appear to us to be most common in MS. By "manipulative" we intend nothing pejorative about our patients, but rather wish to emphasize the unconsciously motivated and indirectly functional dimensions of their symptom behavior. Again, both have neurogenic and psychogenic contributions, and the recognition and understanding of these conditions is highly important to multidisciplinary care settings where more than one health care provider is intensively working with a patient. The "Yes-But" or "Help-Rejecting Complainer" behavior pattern. MS tends to result in interpersonal confusion, guilt, and shame, owing in part to its waxing and waning course, and because of the discrepancy between how good persons may look on the outside compared with how bad they are doing both neurologically and psychologically. These factors often provoke a normal variant of the more serious form of this pattern and which must be distinguished from it. No healthy, relatively well put together person wants to be pitied or discriminated from normal others. Sartre had a critical insight when he noted in his existential psychology that "the gaze" of the other can reduce us to feeling like their objects 21 ; being stared at, recognized in the eyes of others as handicapped, disabled, or impaired, leaves the normal person feeling a certain loss of selfauthority, self-worth, self-esteem, and autonomy. Nobody initially wants to have to take pills, use a cane, wear a brace, get hand controls for an automobile, use a wheelchair, wear a catheter, or get a helper to put their young child to bed for them. Visible signs, in particular, of disability or impairment are naturally unsettling for people making the transition from healthy person to patient (a form of nonperson role, all too often in our society). In the normal variant of the Yes-But pattern, people may refuse to use adaptive aids or make accommodations we feel will help them remain more mobile or independent than they can be

Psychological and Neurobehavioral Disorders in MS

without them, but it is clearly to the end of feeling more normal as long as they can that their refusal operates. In considering the normal variant of the YesBut patient, we need to keep in mind the enormously regressive nature of the constellation of MS-related impairments. Here, we intend the term regressive in a formal psychodynamic, developmental sense. MS commonly provokes changes in persons that leave them experiencing life from a child's position more than an adult's: There is frequently a significant loss of freedoms and autonomous functioning in the realm of mobility, for example. Adults can go where they wish when they wish (e.g., slam the door and leave the room during a fight with another person); children have to wait for a caretaker to take them someplace or permit them to go. Similarly, there are losses of control over bowel and bladder functioning, of the ability to feed oneself or communicate effectively, of the ability to plan effective adult strategies for solving problems in the world, and so on. The degree to which MS can be experienced in terms of a very frightening and specific regression into an unwanted position of childlike helplessness can be easily recognized. For this reason, it is unwise to quickly respond to "control" struggles of a more minor sort with such patients, with one's own attempt to take control for them, even by strongly insisting on their making use of the expertise we offer around some adaptive aid or compensatory strategy they may be resisting (however expert or well meaning we may be). We believe it is helpful to keep in mind the psychodynamic view that a cornerstone of adult identity is set when children first learn they are able to say "no," and thus define the world and then the self in terms of individual likes and dislikes, that is, separately and autonomously. Seen thus, minor control struggles can become opportunities to understand the patient's renewed need to experience a sense of personal power and autonomy, and can give clinicians a chance to discuss this need more directly and supportively with them. Such direct discussions, sensitively and respectfully managed, can help patients look for other more adaptive ways to try to increase their sense of

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self-esteem and control without inadvertently pushing helpful others away or losing potential sources of assistance in the process. Another patient who sometimes is mistaken for the pathologic Yes-But, Help-Rejecting Complainer is an example of what we call the "Old Trouper" Personality Pattern. Patients raised in settings that strongly encouraged and nurtured selfdirection, individualistic solution of even the most difficult problems, and the regular rejection of help or assistance, can be frustrating to professionals. However, the bind is that for such people, accepting our help at first, or too early in the process, compromises their sense of self-integrity even further. If we conceive of MS as a disorder affecting the patient's sense of self, we can come to see the clear, even healthy advantages to some patients in refusing help at first from us in order to "remain the person I was before this illness hit me" for a needed time. The pathologic version of the Yes-But pattern is seen in the patient who most often comes to the provider in obvious distress, begging or demanding our help, alternatives, outside chances, and long-shot therapies-anything and everything. It is not uncommon for clinicians initially to get rapidly and highly involved here and to respond to the patient'S voiced distress with alacrity, creativity, commitment, and sometimes with extraordinary and at times even inappropriate degrees of responsiveness. Shortly thereafter, the sound coming from these patients is most often the low, angry whine, although we are all aware of the more vociferous variations as well: "Yes, I know you want me to go to P1~ but ... ," "Yes, I know you wanted me to try that, but ... ," "Yes, I realize you're going on vacation, but ... ," Probably the most dangerous aspect of such patient behaviors is the response they may engender in us over time: usually some form of rage, along with more unconscious guilt or shame about our anger, followed by renewed compensatory efforts on our part to extend ourselves even further and to be even more helpful to counterbalance our reactive guilt. When our redoubled efforts are (predictably, we later discover) repeatedly rejected as inadequate, we not uncommonly find ourselves eventually enraged at the patient. We often feel

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NEUROREHABILITATION / SPRING 1993

terribly guilty about such rage and may even begin to respond to the unconscious provocations and hostility of the patient with our own unconsciously motivated angry or hostile acts (e.g., forgetting to return a phone call or refill a prescription, double booking during the patient's scheduled time, or accidentally arriving late to appointments). Psychodynamically, we understand pathologic Yes-But behaviors as being a form of pr£?iective identification, a kind of protective interpersonal psychological defense in which the patient finds some feeling unbearable and unmanageable (here, most often it is loss of control, feelings of inadequacy, and rage) and then unconsciously provokes the clinician into feeling those feelings for him or her. There, in the professional, the patient can finally bear to experience such dreaded feelings (and perhaps finally to react to them or try to manage them) more comfortably and safely, now that they are evoked and perceived as external rather than internal phenomena. One of the important signs we have found to recognize the occurrence of this phenomenon is when staff members or clinicians become confused about strong, intense emotional reactions they seem to be experiencing "for no good reason" on otherwise average days for them; again, the rage provoked in us by such indirect, manipulative behavior can very easily also provoke so much guilt that we don't dare let ourselves directly experience it in terms of the patient provoking the feelings, but rather displace our anger somewhere else, where it usually fits less well and makes less good sense upon recognition and reflection. We discovered that careful analysis of unusual or very intense reactions on our parts toward patients proved extremely helpful for our deeper understanding of patients' own issues. Thus, we built regular time for such systematic analysis and reflection into our model of team functioning. While we strongly believe-in line with traditional psychodynamic thinking-that analysis of our own reactions to patients provides not only useful but critical insights into their dynamic processes, we caution that such dynamic process diagnosis requires a fair amount of training and experience to develop as a skill and always requires cross-

checking one's own reactions with the assessment and insights of other members of the team. The neurologically driven borderline personality disorder. One of the most destructive and perplexing phenomena among a closely functioning rehabilitation team is that which classical psychodynamicists call "splitting:" here, it is seen in the apparent playing off of one staff member against another by a patient. This form of manipulation, which we understand usually to be unconscious in its motivation and interpersonal dynamics, most often can be seen when extreme and different forms of experiencing a patient occur for staff members who are not typically so divergent in opinion about shared patients. Typically, the patient will have picked out one staff member who is experienced, treated, and referred to in highly idealized ways. Similarly, at least one other staff person (although the whole team sometimes gets saddled with the negative view) is treated as virtually "all bad"; nothing done for the patient by this person seems right, adequate, or good enough, and, not infrequently, the patient interprets the staff member's behaviors as willfully neglectful or hostile on this side of the split. It is important to remember that MS patients are a subsample of the general population, so more discrete, psychodynamically driven borderline personality disorders will also appear from time to time in them. However, the social and interpersonal histories of such persons will look typically "borderline" as well, where the more acutely neurologically driven borderline patient frequently has a much more even, solid, and less dysfunctional personal history, even where subclinical premorbid borderline "tendencies" or "traits" may be discerned. Again, we believe it is important to recall both the regressive nature of MS, and especially of its exacerbated episodes, as well as the nature of many frontal disconnection syndromes at the level of affective and cognitive experience. By this, we mean to draw attention to the fact that intact frontal lobe functioning appears necessary to develop and maintain synthetic and integrative mental experience and functioning. In patients with compromised frontal function, it is not uncommon for them to be more stimulus bound and

Psychological and Neurobehavioral Disorders in MS

to have more trouble carrying over and integrating successfully and with subtlety, behavioral and emotional experiences from one setting or even one person (in this case) to another. We feel it makes good, scientifically intuitive sense to extend what is well known about the role of frontal lobe functioning in cognition to the arena of interpersonal affective processing. Being highly stimulus bound, and with their brains needing to simplify the perceptual field (and also being less well able to make sense of subtle, complex, or conflicting cues-which many interpersonal cues are), we speculate that compromised patients may use splitting as a more brain-based or brain-driven perceptual and cognitive shortcut interpersonal strategy imposed on their complex functioning, in a sense against or outside their will. Once set in such behavioral patterns, these patients tend also to perseverate in their reactions, and hence we may see their "resistance" or "unwillingness" to entertain alternative explanations about staff members once such strong opinions are locked in. Disturbed memory function (involving processes necessary for combining the recall of interpersonal moments and exchanges, as well as memories of their own affect and the procedural memory skills of being able to sort out conflicting interpersonal issues efficiently with others), undoubtedly also plays a contributory etiological role here, though further research will be needed to confirm and elucidate this clinical inference, despite how heuristically plausible and attractive it may seem.

MANAGING THE MS-RELATED DISORDERS OF DYSCONTROL AND ADJUSTMENT Standard therapeutic strategies are indicated for the discrete psychiatric or psychological conditions and symptoms that arise in patients with MS. For instance, antidepressants should be offered to patients whose depressions indicate the appropriateness of this modality of treatment (i.e., neurovegetative signs and clear target symptoms). The treating team, however, should remain cognizant of particular potentially adverse side effects

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such as anticholinergic reactions, and, wherever possible, avoid these by utilizing alternative agents. People with MS may be more sensitive to the effects of psychotropic medication, possibly due to the presence of accumulating CNS lesions or even alterations in blood-brain barrier function. In general, we recommend that dosages should be titrated along with even more rigorous and frequent monitoring than is the case in nonneurologically involved patients. Another issue to be aware of is the sometimes inadvertent and largely unconscious meaning that being given such medication can have for our patients. (Clinicians can also have parallel and less than entirely unambiguous motives for offering psychotropics as well.) For example, it is not uncommon in our experience for patients to interpret a doctor's quick prescription of psychotropic medication as an implicit message that the clinician is uncomfortable with the patient's feelings (i.e., that these feelings are bad and must be gotton rid of-or even that feelings can generally be "cured" through medication). Patients may then feel guilty and/or ashamed that they are depressed or anxious, and come problematically to hide such symptoms from their health care providers and other potential sources of aid in their lives. Changes in psychological function should be monitored following shifts in some of the other medications used in MS for treatment. of exacerbations or for the management of various symptoms. 22 ,23 High dose steroids may provoke emotional lability, sleep disturbances, or even frankly manic or psychotic states. 24 Patients may benefit from temporary, concurrent use of a mild sleeping medication (preferably with a low cognitive side effect and minimally disruptive pharmacokinetic profile), or even acute treatment with minimal doses of the benzodiazepine anxiolytics. Similarly, explicit, presteroid administration education about possible psychological reactions frequently reduces panic among patients and families when such reactions do occur. Adjustments in hospital room lighting at night and provision of external aids like informational notes taped to the bedside may further help reduce periods of disorientation and panic, which steroids may occasion in such patients.

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Conversely, it is also important to remain aware that some medications such as carbamazepine, used for management of pain and paresthesias in MS, have psychotropic properties that may cover subclinical psychiatric symptoms such as depression and mood instability during use. Such psychiatric symptoms may later emerge acutely if the medication is discontinued or even simply lowered in dosage, so careful psychological monitoring under these circumstances should routinely be instituted on the team. The whole range of psychotherapeutic options should be made available to patients when these appear appropriate. We especially endorse nonpathologically indicated a psychological health assessments for all MS patients who are involved in intensive rehabilitation treatment. Making such an assessment early on as a basic health-oriented part of MS care, helps to depathologize and destigmatize any later needed psychological intervention or support, as well as to underscore to patients the importance to the team of their psychological, emotional, and relational health, as well as the health of their bodies. It can also help with the early identification of the discrete psychological disorders. We have seen that the more serious of the major neurobehavioral syndromes and psychological disorders described above respond to direct, intensive intervention. This often prevents patients from dropping out of needed ongoing neurologic and rehabilitative care, and also serves to keep the functioning and professional interactions of the team of rehabilitation clinicians smooth and intact. P'atients with acutely lifethreatening psychiatric or florid psychotic symptoms should, of course, be hospitalized on an inpatient psychiatric unit. However, in our experience of nearly four years and with the roughly 300 rehabilitation MS inpatient admissions, psychiatric hospitalization was necessary in only three cases.

INPATIENT REHABILITATION The more serious of the non psychotic neurobehavioral syndromes of MS can and need to be treated in the context of an inpatient rehabilitation stay. It is especially important and useful for

the rehabilitation program to be focused on the patient's self-functioning in those syndromes in which neurologic~ly driven disinhibition and disorganization disorders dominate the clinical picture. For those patients in whom frontal lobe selfregulative, self-monitoring, or self-modulating functioning is compromised or disconnected, the rehabilitation unit, and the rehabilitation team more specifically, can function as a kind of diagnostic laboratory. The need, depth, kind, degree, and utility of external structure or regulative assistance can be productively asssessed in many rigorous and specific ways on such an interdisciplinary unit. We recommend in this context that the team evaluate patients in a range of structured to unstructured (e.g., recreational outing) settings. This range provides a more accurate understanding of the patient's actual capacities, since a person may appear more intact on a highly structured rehabilitation unit or in structured psychological testing, than "out in the world." The alternatives and options for cuing, eliciting, or providing minimally restrictive and maximally effective options given the specific constellation of preserved and diminished capacities for particular patients can be tried. As such optimal strategies are fine tuned, the rehabilitation team can provide critical practice for the patient with self and others, adjusting and reworking those strategies prior to discharge, in a safe, controlled environment, gradually geared toward the complexities of everyday personal functioning. Inpatient rehabilitation in such a model also provides an intensive, maximally supportive structure to involve the patient directly with caregivers around such necessary and often difficult-to-initiate or difficult-to-Iearn strategies. A brief case example speaks to the utility of this approach: A woman with MS in her early 30s, wheelchair-bound, moderately disinhibited, and extremely garrulous from the effects of her disease process was well known to clinicians in the outpatient MS clinic. This patient would intrusively and without apparent sensitivity to their needs, "corner" people in waiting rooms and hallways, and engage in somewhat rambling, inappropriate discussions of a pressured sort. This behavior had been initially noted-and tolerated without intervention-by the many clinicians who saw the

Psychological and Neurobehavioral Disorders in MS

patient in individual contexts, but who clearly felt uncomfortable with the amount of annoyance and helplessness (as well as sympathy) this individual engendered in them. Of note, while the patient's husband had indeed commented with worry and unhappiness on his wife's "changed personality," he had not described the disinhibition syndrome in detail himself, perhaps not discerning it as a clinical construct to organize his observations and discomfort at first. However, the personality change in her had become significant enough that he seriously considered a separation or divorce. When the patient was first admitted for inpatient steroid treatment (to an inpatient neurology floor, and not to the rehabilitation unit), the disruptive and inappropriat.e interpersonal aspects of her behavior became clear against the background structure of the hospital. Indeed, they affected both the patient's roommate and nursing staff to such a degree that acute psychological intervention was sought. The patient was counseled, and a behavioral plan was put into effect that quickly and markedly diminished the intrusive behaviors. For a time, staff reported a clear lessening of the disinhibited symptomatology suf: ficient to have the patient visit the clinic without distressing or disturbing others in her vicinity. A number of months later, the patient was brought in for a comprehensive inpatient rehabilitation stay to address a multitude of increasing functional complaints. It had also become clear that the situation at home had deteriorated, and the patient's marriage was in danger of dissolution. What was surprising to staff was the degree to which the patient was functioning relatively well on the unit (and across therapies) and was displaying good control of the .formerly intrusive, inappropriate social behaviors. Her husband, however, continued to be upset (and unclear) about the personality shift in his wife, so, in order better to evaluate the patient, attempts were made to observe her in a variety of progressively less-structured contexts (including supervised off-grounds, highstimulus, low-structure social and recreational activities). While in-room behaviors were relatively well controlled (the patient apparently was able to use the familiar context of the clinicians and institution as cues to maintain her behavioral plan and

37

controls), the team discovered that the patient's behaviors broke down significantly in less familiar, less well-cued, or unstructured settings, and in ways that the in-therapy behavior surprisingly did not suggest were likely to occur. At that point, it was possible to shift the emphasis of th~ inpatient stay toward an intensive multidisciplinary program of behavioral therapeutics to address this patient's difficulties more comprehensively. This involved a specific review of psychotropic medications, intensive work around social and interpersonal pragmatics in speech therapy, training in self-relaxation techniques, and addressing the patient's depression and anxiety that emerged as the interpersonal problems were articulated and brought to the surface. In addition, other members of the rehabilitation team-such as physical therapy and nursing-were enlisted to help "push" the patient therapeutically into less tightly structured and more life-real situations on the unit, where likely problems could be elicited and then addressed in the light of the behavioral plan (i.e., having the patient wait for the next therapy session in an unstructured setting rather than in the gym). While all the patient's interpersonal problems did not disappear through such a focused and coordinated rehabilitation plan, the team was able to assess and intervene more specifically and helpfully to diminish their intensity. For the first time outside the clinic setting, the patient and family were able to report some significant carryover of these important changes into her daily life. (While the vagaries of family dynamics do not always make it possible, intensive involvement of such patients' significant others while addressing these issues during a rehabilitation stay often results in the greatest subsequent carryover improvement.) In a different article without our necessary topical constraints, it would be possible, and we feel vital, to write on the nature of the reflective resonances experienced by clinicians-both positively and negatively-in the course of their intensive work with MS patients. These frequently bright and similarly aged neurologic patients who are experiencing their very selves unravelling, often with little that can be done to halt or ameliorate the terrible process, can be disturbing and

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NEUROREHABILITATION I SPRING 1993

unsettling for us in particular ways. In our intensive team treatment of MS patients over time, we have found it critical for rehabilitation clinicians to recognize, track, and talk about the reactions evoked in ourselves, both to keep patient care strong and vital, but also to provide the necessary support and understanding of ourselves to keep on with this very difficult and demanding work we so value and which otherwise might overwhelm our resources. Our own approach, described elsewhere,25 involved use ofa "process group" for the inpatient rehabilitation team. (The group met weekly and was focused and structured in specific ways given the nature of the MS disease process and the kinds of stresses work with severely affected MS patients consistently seems to provoke in health care providers.)

CONCLUSION As clinicians who have spent many years working intensively with MS patients, we feel strongly that the recognition of and attention to the syndromes or behavior patterns discussed above is necessary for productive, relatively comfortable, and genuinely successful long-term rehabilitative work with this population. Neurobehavioral disorders in MS

are profoundly complex and multidimensional phenomena, and our treatment approaches must take this complexity into greater account. Similarly, simply appropriating extant models of grief and mourning is inadequate for understanding with subtlety and useful nuance the constellation of psychological and neurobehavioral problems that typically arise around patients' attempts to adjust to and heal their threatened or disordered senses of self We, as health care providers, too, must attend to the reciprocal and parallel (often unconscious) effects of treating people suffering from such an insidious, yet violent and devastating disease, in order to maintain our own optimal professional and personal levels of functioning. Obviously, a model for assessing and intervening rehabilitatively, as we have presented, requires development of new models of "progress." Measuring "successful" rehabilitation by more tradition, linear outcome measures must gradually shift in favor of models that emphasize the importance of complex process across interwoven functional systems. Treatment of MS is always determinedly treatment of the patient's whole self, regardless of what particular symptoms or acute functional needs may superficially be dominating the clinical picture at an any given time.

REFERENCES 1. Garland EJ, Zis AP. Multiple sclerosis and affective disorders. Can.! Psychiat 1991; 36:112-117. 2. Minden SL, Schiffer RB. Affective disorders in multiple sclerosis: review and recommendations for clinical research. Arch Neurol 1990; 47: 98-104. 3. Schiffer RB. Disturbances of affect. In: Rao SM, ed. Neurobehavioral aspects of multiple sclerosis. New York: Oxford University Press, 1990. 4. Mahler ME, Benson DE Cognitive dysfunction in multiple sclerosis: a subcortical dementia? In: Rao SM, ed: Neurobehavioral apects of multiple sclerosis. New York: Oxford University Press, 1990. 5. Rao SM, Leo GJ, Bernardin L, et al. Cognitive dysfunction in multiple sclerosis. Neurol 1991; 41 :685-691. 6. Dewis ME. Nurturing a valuable resource: family caregivers in multiple sclerosis. Axone 1992; 13:87-94.

7. Maloney FP, Burks JS, Ringel Sp, eds. Interdis-

8.

9. 10. 11.

ciplinary rehabilitation of' multiple sclerosis and neuromuscular disorders. Philadelphia: Lippincott, 1985. Cobble ND, Dietz M. Grigsby J, Kennedy P. Rehabilitation of the patient with multiple sclerosis. In: DeLisa J, ed. Principles and practice of rehabilitation medicine, 3rd ed. Philadelphia: Lippincott, 1993. Berrios GE, Quemada JI. Depressive illness in multiple sclerosis: clinical and theoretical aspects of the association. Br.! Psychiat 1990; 156: 10-16. LaRocca NG. A rehabilitation perspective. In: Rao SM, cd. Neurobeluwioral aspects of multiple sclerosis. New York: Oxf()rd University Press, 1990. Grigsby J, SchneidersJ. Neuroscience, modularity and personality theory: conceptual foundations of a model of complex human functioning. Psychiat 1991; 54:21-38.

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12. Kubler-Ross E. On death and dying. New York: Macmillan, 1969. 13. Troll LE. Early and middle adulthood, Monterey: Brooks/Cole, 1975. 14. Levinson DJ. The seasons of a man:, life. New York: Ballantine, 1978. 15. Wortman CB, Silver RC. The myths of coping with 10ss.J Consult Clin Plychol1989; 57:349-357. 16. Rabins pv. Euphoria in multiple sclerosis. In: Rao SM, ed. Neurobehavioral aspects of multiple sclerosis. New York: Oxford University Press, 1990. 17. Schiffer RB, Herndon RM, Rudick RA. Treatment of pathologic laughing and weeping with amitryptyline. N Engl J Med 1985; 312: 14801482. 18. Peterson RC, Kokmen E. Cognitive and psychiatric abnormalities in multiple sclerosis. Mayo Clin Proc 1989; 64:657-663. 19. Grigsby J, Ayarbe S, Kravcisin N, Busenbark D. Working memory is impaired among chronic-

20. 21. 22. 23. 24. 25.

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pr~gressive MS patients. Manuscript under review. Huws R, Shubsachs Ap, Taylor PJ. Hypersexuality, fetishism and multiple sclerosis. Br J Psychiat 1991; 158:280-281. Sartre J-P. Being and nothingness. New York: Philosophical Library, 1956. Minden SL, Orav J, Achildkraut JJ. Hypomanic reactions to ACTH and prednisone treatment fix multiple sclerosis. Neuro11988; 38:1631-1634. Yassa RY, Iskandar HL. Baclofen-induced psychosis: two cases and a review. J Clin Psychiat 1988; 49:318-320. Kershner P, Wang-Cheng R. Psychiatric sideeffects of steroid therapy. Psychosomatics 1989; 30: 135-139. Schneiders J, Cobble N. Notes from underground: the psychological effects on clinicians of intensive work with MS patients. Manuscript in preparation.