THE
PSYCHOLOGY OF POLIO AS PRELUDE TO POST-POLIO SEQUELAE:
Behavior
modification and psychotherapy.
By: Richard L. Bruno, Ph.D.1 and Nancy M. Frick, M.Div.2
ABSTRACT
Even as the physical causes and treatments for Post-Polio Sequelae (PPS)
are being identified, psychological symptoms - chronic stress, anxiety,
depression and compulsive, Type A behavior - are becoming evident in polio
survivors. Importantly, these symptoms are not only themselves causing
marked distress but also are preventing patients from making the lifestyle
changes necessary to treat their PPS. Neither clinicians nor polio
survivors have paid sufficient attention to the acute polio
experience, its
conditioning of life-long patterns of behavior, its relationship to the
development of PPS and its effect on the ability of individuals to cope
with and treat their new symptoms. This paper describes the acute
polio and post-polio experiences on the basis of patient histories, relates
the experience of polio to the development of
compulsive, Type
A behavior, links these behaviors to the physical and psychological symptoms
reported in the National Post-Polio Surveys and presents a multimodal behavioral
approach to the treatment of PPS by describing patients who have been treated
by this Post-Polio Service.
ACKNOWLEDGEMENTS
The authors would like to thank those who have volunteered as research subjects and our patients, whose experiences are the foundation of this report and who have allowed themselves to be quoted for this paper. We would also like to thank Dr. Thomas Galski for his criticism of the manuscript, Ms. Joan Kelly for her computer expertise and Mary Ann Solimine, R.N., M.L.S., without whom this work would not have been possible. This research was funded by grants from the Joel Leff and George Ohl Foundations.
THE PSYCHOLOGY OF POLIO AS PRELUDE TO POST-POLIO SEQUELAE: Behavior modification and psychotherapy in treating PPS
By Richard L. Bruno, Ph.D. and Nancy M. Frick, M.Div.
"I'll walk without crutches. I'll walk into a room without scaring everybody half to death. I'll stand easily enough in front of people so that they'll forget I'm a cripple." Franklin D. Roosevelt (1)
In the 1980's, nearly half of the 1.63 million American polio survivors
reported new and unexpected symptoms - fatigue, muscle weakness and pain
- that have come to be called Post-Polio Sequelae (PPS) (2,3). While the
medical community focused its attention on these new physical symptoms,
polio survivorsÕ psychological reactions to PPS emerged. Fear,
disbelief, denial and confusion were experienced first since PPS were completely
unexpected (4). The 1985 National Survey of 738 polio survivors
(5,6) revealed
that 86% of the respondents never considered the possibility of developing
new problems after having reached maximum recovery from polio and that
72% did not initially think that their new symptoms were related to their
having had polio. Since polio survivors did not know the cause
of their new symptoms they looked to the medical community for help.
Fear and confusion increased as medical ignorance and disinterest frustrated
and angered polio survivors. Many physicians dismissed new
symptoms as psychogenic, factitious or unrelated to polio. In the
1985 National Survey, 23% of respondents were told by physicians that the
symptoms were "all in their minds" while 26% were told that the symptoms
"could not possibly be related to having had polio." Other patients
received frightening
and unfounded diagnoses, such as "some kind of ALS" or
recrudescent
polio (3). Many patients were told that they would have to accept
new symptoms and loss of function since all polio survivors were "just
getting old" (4).
Now, in the second decade of PPS, the medical community has accepted the
reality of PPS
and is identifying effective treatments for new fatigue, weakness and pain.
Even with these advances, additional psychological symptoms - chronic stress,
anxiety, depression and compulsive, Type A behavior - are being identified
in polio survivors. Importantly, these symptoms are not only themselves
causing marked distress but also are preventing patients from making the
lifestyle changes necessary to treat their PPS (6,7,8).
It appears that the factor central to the etiology of these psychological
symptoms is that polio survivors are being forced to cope with new symptoms
and disability when many have not yet dealt with the emotional reality
of their having had polio over thirty years ago. Evidence for
the postponement of coping with the acute polio experience was found in
the 1985 National Survey, where 26% of respondents reported that they "did
not think of themselves as having a disability" before developing PPS;
with the onset of PPS 42% admitted to having a "second disability." (6)
Neither clinicians nor polio survivors have paid sufficient attention to
the acute polio experience, its conditioning of life-long patterns of behavior,
its relationship to the development of PPS and its effect on individuals'
ability to cope with and treat their new symptoms. It is the purpose
of this paper 1) to describe the acute polio and post-polio experiences
on the basis of published reports and patient histories; 2) to
relate the experience
of polio to the development of compulsive, Type A behavior; 3) to link
compulsive, Type A behavior to the physical and psychological symptoms
reported in the National Post-Polio Surveys; 4) to present a multimodal
behavioral approach to the treatment of PPS by describing patients who
have been treated by this Post-Polio Service during the past year.
The Acute Polio
Experience
Polio survivors frequently report that the onset of PPS have forced them,
often for the
first time, to recall and examine their acute polio experience (9).
With the onset of polio, these individuals understood that they had been
stricken by the "greatly feared disease," believed that disability was
likely and death was possible (10). These fears were amplified in
those who knew others who had been disabled or even killed by polio (10).
Polio survivors recall confusion and terror at being wrenched from their
homes and being given by their parents into the care of strangers with
whom they were required to live for weeks, months or even years (11).
Even children too young to understand what was happening likely sensed
their parents' fear and panic; they certainly felt the pain of their own
illness and the desolation of being abandoned by their parents (11,12,13,14).
Individuals admitted to hospital quickly became aware of their complete
loss of control and total dependency on the hospital staff. Many
could not feed or toilet themselves; those with the most severe paralysis
could not even move. Patients' were forced to rely totally on hospital
staff if their most basic survival needs were to be met. If they
were to survive, patients had little choice but to suppress their fears
and follow their parents' parting instruction: "Be good, don't make trouble
and do everything you're told" (11).
Separation from parents and loss of control were not the only sources of
fear. Patients describe a hospital regimen of painful and often frightening
therapies including hot packs, splinting, bracing, stretching and exercise
(15). Patients also report undergoing multiple surgeries, including
muscle transplants, tendon lengthenings and osteotomies. One especially
brutal procedure that many parents attempted to obtain for their children,
pulverized weakened muscles and their motor nerves with an electric riveter
to promote axonal sprouting - a uniquely medieval attempt to prevent permanent
visible disability (16,17). These procedures were
administered
usually without explanation and certainly without consent since, especially
at the height of the epidemics, hospitals were overwhelmed by the sheer
number of polio patients needing care (10,11,12,13,15,18,19). Excluding
young patients from treatment decisions and the failure to communicate
information about their illness magnified the severity of the illness to
the patients and permitted their inherent fear of death to emerge (14).
Questions or complaints about therapies were not infrequently met by staff
anger or punishment (13,18). Staff anger was viewed as a very real
threat to survival by patients who were isolated from parents and totally
dependent on the staff. One patient described this situation as placing
her in "mortal danger" (15); she believed that the staff had to be placated
if she were to survive. Patients discovered that staff anger could
sometimes be prevented if they complied with hospital regimen without
questions.
Full participation in therapies, without regard to pain or exhaustion,
would sometimes garner brief attention or even praise. Thus, the
expression of personal needs and emotion were punished by the staff while
unquestioning compliance with and performance for the staff were reinforced.
Unfortunately, protection from punishment could not always be assured.
Patients describe staff who acted with unnecessary cruelty in maintaining
order and control on the ward. Family visits were
restricted to
only a few hours per week, reinforcing patients" feelings of parental abandonment
and dependency upon staff (12,15, 20). Normal, child-like behaviors
were punished excessively. Several patients reported having been
locked in a completely dark closet overnight when they spoke or cried after
"lights out." Even appropriate and necessary nursing care could be withheld
for no apparent reason (15,18).
Many of the patients treated by this Service have related other instances
of psychological,
physical and even sexual abuse at the hands of hospital staff. Instead
of causing patients to complain, such abuse further reinforced patients'
belief that survival depended upon the suppression of personal needs and
emotion and unquestioning compliance with those in authority.
This belief is evidenced in one patient's rationale for not reporting repeated
sexual abuse: "I would have made my parents angry because I was not doing
what I was told and the nurses, who I depended on for everything, would
have punished me for making trouble for them. All I could do was
stop feeling bad about it and smile"
Under these circumstances, some patients report having lost their sense
of "identity" (18,20). Some report over-identifying with the staff
and even expressed the desire to become "orthopedic surgeons when they
grew up" (21). Others apparently submitted so completely to the hospital
staff that they did not wish to go home or even asked to return to the
hospital following discharge (22,23). It appears that many polio
survivors learned to deal with their abandonment, loss of control, fear,
pain and abuse by submitting to those in authority, complying fully with
external expectations and denying personal needs, physical and emotional
pain and even their own individuality (24). These behaviors are evident
in this summary of the "Good Chart" written by polio wardmates at Baltimore's
City Hospital (22):
LISTEN TO THE DOCTORS
OBEY THE NURSES
DO NOT FIGHT
DO NOT BE BAD
BE GOOD IN SCHOOL
DO YOUR HOMEWORK
DO NOT TALK AT DINNER or IN SCHOOL
LITTLE FOLKS SHOULD BE SEEN AND NOT HEARD
When polio patients returned home as "polio survivors," the "Good Chart" became their prescription for proper behavior. They had learned very young and very well that submission, compliance and suppression of emotion were required if they were to escape "mortal danger"(15).
Polio Survivors
in the Community
When polio survivors re-entered their communities, any special attention
that may have been provided to them and their families during the acute
polio often quickly stopped (22). Friends of polio survivors' families,
unable to deal with the reality of polio, often disappeared (22).
It was not uncommon for neighborhood children to be prohibited from playing
with "polio victims" for fear that the "crippling" was contagious (23).
Polio survivors, no longer physically able to participate easily or fully
in social activities, became isolated (10, 25). Such alienation and
isolation made polio survivors pariahs (10,14,22,25).
However, there was "hope." Individuals had been imbued with the "unqualified
progress ideology" of physical therapy following their acute illness and
had often been given prognoses upon discharge that were unrealistically
optimistic (26). One paraplegic woman was told, "You'll walk out
of your braces before you start dating." Such prognoses were seen
as a call to normalcy. The use of braces, crutches and wheelchairs,
that had made mobility possible and had been symbols of triumph over paralysis
in the hospital, became stigmata of "the crippled" and symbols of one's
failure to have recovered completely. Necessary assistive devices
were quickly discarded, regardless of the discomfort, fatigue, awkwardness
or pain that resulted, as individuals strove for the "appearance of complete
physical normalcy" (21, 27). Painful and exhausting physical therapies
were resumed upon patients' return home from hospital or initiated in those
who were not hospitalized. Physical therapy often continued
for more than a decade after the acute polio with the only goal being "complete
recovery"(11). One patient, who became triplegic at age six and has
consistently thereafter used a wheelchair, continued daily physical therapy
until she
left home for
college, "Everyone believed that physical therapy would make me walk -
eventually." As motivation to walk without braces, another
patient was repeatedly beaten by his father who said, "I'd rather see you
dead than a cripple."
The abuse of polio survivors by parents was usually less overt but
was not infrequent, being motivated by a denial of polio and revulsion
by disability (13,14, 27). Some polio survivors report being
physically trapped by their parents' refusal to make accommodations for
their physical limitations. Homes frequently remained inaccessible,
making activities of daily living impossible without assistance from parents
- assistance that could be inconsistently provided or consistently withheld
(28). One patient was regularly carried outside in the early morning,
regardless of the weather, where she remained until dark. Another
patient reported that he was locked in a car with windows closed in the
heat of midsummer so that his family could tour Washington's then inaccessible
national monuments. Polio survivors learned that physical abilities
needed to be maximized if they were to survive in a "barrier-full" society.
Other parents strove to reincorporate the child into the family routine
and "forget" about polio by requiring children to equal or exceed the level
of physical performance they exhibited before their illness (11).
One patient's family took up hiking when their daughter returned home from
the hospital, expecting her to "learn to keep up with the others in spite
of crutches and braces. Patients also report that they were
expected to out-perform their peers academically. Several patients
reported that they would be severely punished if they received "anything
less than an "A". Such academic expectations reinforced the premature adult-like
behaviors that were described in children who had been hospitalized following
the acute polio (22).
Still other parents experienced both "shame and estrangement" at having
been "singled out" by polio (22). Unable to deny the reality of their
childs' disability, they isolated the family from society and severely
restricted their childÕs physical activities (11,14,22). One
patient, who had a barely noticeable limp following polio at 18 months,
was prevented from leaving his yard or playing with other children until
he attended high school. Such isolation impaired the development
of social relationships (25,29,30) and parental shame of disability was
learned by the child (14).
Unfortunately,
many patients report that their parents have consistently refused through
the years to discuss anything having to do with the physical or emotional
reality of the polio experience (14,20). An attempt at discussion with
one 45-year old patient's mother was stopped by the angry statement, "It's
all too painful for me. Don't ever mention it again."
Whether unrealistically demanding or overly restrictive, parents' powerful
expectations, combined with those of physicians, nurses and therapists,
dictated the behaviors that were required of polio survivors if they were
to escape "mortal danger" (15) and be accepted by parents and society.
Yet, despite the fulfillment of these expectations by the achievement of
a remarkable degree of functional recovery in most individuals and even
the appearance of "normalcy" in many, polio survivors
were told that
they were still not acceptable (31). They report being told by teachers
that no one would ever hire them, by parents that no one would ever marry
them, and by physicians that they should never have children (28,32,33).
Thus, as polio survivors entered adulthood they had internalized
the expectations of those in authority, which led to self-alienation and
actual participation in the "execution of the self" (24). Polio survivors
continued to follow the prescription for proper behavior set forth in the
"Good Chart" even though they had been told that fulfilling the expectations
of others would not result in acceptance by society (34).
Type A Behavior as a Post-Polio Sequelae
The majority of polio survivors have succeeded in minimizing the appearance
of disability, maximizing independence and "disappearing" into society
(28). Most polio survivors have learned to walk after discarding
nearly all of their original assistive devices (6). Despite society's
negative expectations, polio survivors have had more years of formal education
and a larger proportion of them are married as compared to the general
disabled and non-disabled populations (Table 1)(35). Polio
survivors also have a higher level of employment as compared to the general
disabled population (36).
These data suggested the hypothesis that polio survivors have not merely
achieved "normalcy" but have actually surpassed it by learning physically
and emotionally stressful Type A behavior as a response to their experience
of polio (5,28,37). The polio experience should have provided an
ideal environment for the conditioning of Type A behavior.
Type A behaviors are thought to learned in service of the "active avoidance
of punishment" (38) by individuals who are engaged in a chronic "struggle
to overcome environmental barriers" (39) "against the opposing efforts
of other things or persons" (40). Further, Powell, et al (41) found
that a "consistent set of beliefs and attitudes about the self, others,
and life in general lay
beneath the overt
(Type A) behavior," including "low social support," "low self-esteem"
and loss of control. Such beliefs would be the likely consequence
of the above-described experience of polio.
To test the hypothesis that polio survivors are Type A, the Brief Type
A
Questionnaire
(42) was administered to 738 polio survivors as part of the 1985 National
Post-Polio Survey (5). Polio survivors' mean Type A score of 53 ±
22 was significantly higher than that of non-disabled controls (36±14).
This finding was replicated by the 1990 National Survey of 373 polio survivors
(6) who had a significantly elevated mean Type A score of 59 ± 22
as compared to non-disabled controls (45±20) and adults with spina
bifida (48±22)(Table 2).
Since it had been suggested that Type A individuals are hypersensitive
to criticism (41), the 1990 National Survey also included the Reinforcement
Motivation Survey (RMS) (43) that contains a Sensitivity to Criticism and
Failure Scale. Polio survivors had a significantly elevated mean
Sensitivity to Criticism and Failure score (68±28) as compared to
non-disabled controls (59±27) that was significantly correlated
with the Type A score (r=0.44)(5). This correlation suggests that
Type A behavior in polio survivors serves in part to prevent criticism
and to protect against feelings of failure (21,44).
Compulsive Behavior as a Post-Polio Sequelae
The majority of patients treated by this Service not only demonstrate Type
A behavior but also evidence behaviors that are not typically Type A. Patients
describe an inability to express emotion or admit having physical pain
("I can't complain because people expect the handicapped to complain").
They inflexibly and unitively judge their own behavior on the basis of
what is "normal" and on unachievable ideals of perfection.
One patient stated, "If I fail at anything, I might as well die.
It boils down to either using every ounce of my energy to lead a normal,
successful life
or giving in
to my weaknesses and being inferior."
Patients also demonstrate a strong need to be in control (15) and report
marked anxiety with and nearly phobic avoidance of any change ("I am constantly
moving and in a constant state of fear. I feel if I slow down, I'll never
get started again") or decrease in the number or extent of their activities
("I can't just sit and do nothing"). These patients refuse to slow
down, delegate responsibilities or allow others to assist them even when
they experience fatigue, weakness and pain. They report a saw-tooth
pattern of activity, characterized by working until physical symptoms prevent
them from continuing. Exhausted, anxious and fearful of criticism,
they rest until activity is again possible and then work until symptoms
force them to halt. As one polio survivor stated, "I have spent my
whole life pushing to keep going and I still push myself even though I
know I shouldn't. I keep going until I can no longer walk or stand
the pain. I cannot be stopped. I work until I fall."
Patients also report that they "must" satisfy the real or perceived needs
of others ("I can't ever say "No'") and some describe a compulsion to perform
nearly ritualistic behaviors in order to escape "mortal danger" (15).
One patient stated, "I know it's ridiculous, but I believe that if I make
the bed every day I'll never die; I will earn the right to continue to
live."
These behaviors are reminiscent of the Obsessive Compulsive Personality
Disorder (OCPD)(45). However, polio survivors' compulsive behavior
differs from OCPD in important ways. Their compulsivity does not
interfere with task completion or promote indecisiveness, nor do polio
survivors lack generosity in giving to others. On the contrary, compulsive
behaviors are goal-oriented and are performed in the service of others.
Importantly, these behaviors are associated with the exacerbation and maintenance
of PPS symptoms. Because of these differences with OCPD, a separate
diagnostic category, Compulsive Psychophysiological Disorder (CPD), is
suggested to
highlight the
relationship between goal-oriented, compulsive behaviors and the occurrence
of physical symptoms (Table 3).
Fifty percent of the patients evaluated by this service met the criteria
for CPD. Further, the diagnosis of CPD is significantly correlated
with patients' elevated Type A (r=.46) and Sensitivity to Criticism and
Failure scores (r=.47) suggesting that compulsive behaviors are related
to Type A behavior and may also serve in part to prevent criticism and
to protect against feelings of failure. These findings support the
theoretical literature on compulsive behavior, which suggests that compulsivity
protects against
loss of control and failure (46) and is used to "avoid or overcome distressful
feelings of helplessness" (47)(see "flashbacks," below). Millon and
Everly (48) state that compulsive behavior occurs when the "child never
develops a separate identity, and functions in the world by conforming
to strict, internalized parental standards and to the standards around
him or her" - conditions that are described above as central to the experience
of polio. And, compulsive behavior has been seen to develop in children
hospitalized even for brief periods (20).
Compulsive, Type A Behavior and the Etiology of PPS
Unfortunately, polio survivors appear to have paid a high price for learning
compulsive, Type A behavior in an effort to achieve "normalcy," escape
"mortal danger" (15) and protect against the emotional pain generated by
the polio experience. That price is Post-Polio Sequelae (28).
Physical overexertion and emotional stress were reported to be the first
and second leading causes of PPS on the 1985 National Survey (5).
The majority of respondents to the 1990 National Survey reported symptoms
of chronic stress (frequent feelings of anxiety, low mood and difficulty
falling asleep because the "mind is racing")(6,7,8). These symptoms,
along
with the Type
A and Sensitivity to Criticism and Failure scores, were significantly correlated
with PPS symptom severity (Table 2)(5,6,49).
These data indicate that PPS are psychophysiological in nature and that clinicians must address both physical and psychological symptoms when polio survivors present for treatment of PPS. Thus, the treatment of PPS requires behavior modification to reduce compulsive, Type A behavior and thereby decrease PPS symptoms. Psychotherapy is also necessary to address the dysfunctional beliefs and powerful suppressed emotions resulting from the experience of polio that motivate compulsive, Type A behavior, produce psychological distress and prevent compliance with therapy.
Behavioral Modification and Psychotherapy in Treating PPS
All patients who present for treatment by the Post-Polio Service undergo complete physiatric and psychological evaluations, the latter beginning with administration of the Reinforcement Motivation Survey (RMS) (43) and Beck Depression Inventory (BDI) (50). Of the 32 patients evaluated during the past year, the majority had elevated Type A (mean = 57 ± 28) and Sensitivity to Criticism and Failure (mean = 75 ± 28) scores on the RMS but had insignificantly elevated BDI scores (mean = 14 ± 9).
Although 57% of patients reported "low mood," only 31% met DSM-IIIR criteria for Major Depressive Episode (MDE), a percentage similar to the 32% reported by Freidenberg, et al. (51) but higher than the prevalence of MDE in the general population (3% to 7%) (52, 53) and in those with medical illness (20%) (54). Friedenberg, et al. (51) suggested that damage to monoaminergic neurons in the brain stem may predispose polio survivors to MDE (see 49). However, the report of "treated depressions" in 38% of adults with spina bifida suggests that childhood-onset orthopedic disability itself may predispose to MDE in adults (55).
The presence of MDE in our patients is important, not only because it requires treatment, but also because MDE is significantly correlated with treatment non-compliance. MDE was diagnosed in 63% of patients who refused further treatment after the initial evaluation and in 50% of those who were discharged for therapeutic non-compliance. Only 11% of patients who were fully compliant and 29% of those who were partially compliant with therapy were diagnosed as having a MDE. MDE is always treated with psychotherapy, although depression was sufficiently severe in 70% of patients that an antidepressant was recommended.
Following psychometric testing, psychological, medical and psychosocial histories are taken that include detailed descriptions of the new symptoms and their causes, the acute polio experience, post-polio rehabilitation and patients' personal experience of disability. Information about the response of family, friends and community to the acute polio, to patients' original disability and to PPS is elicited along with a chronology of school and vocational achievements noting the onset and development of compulsive, Type A behavior.
Treatment. The treatment of PPS is approached by all members of the treatment team - physician, psychologist and occupational and physical therapists - from a psychophysiological perspective using the techniques of multimodal behavior therapy (56). Therapy begins by asking patients to list their treatment goals and keep a daily log of activities, perceived exertion, fatigue, muscle weakness, pain, emotional stress, thoughts and emotions. This log is used to document physical and emotional symptoms and demonstrate their relationship to thoughts, affect and compulsive, Type A behavior (56). Outpatients are then evaluated by occupational and physical therapists during twice-weekly sessions. Inpatients receive all therapies daily.
After two weeks, log data and evaluation results are used by the treatment
team to formulate a behavioral plan designed to decrease behaviors that
cause physical symptoms, initiate self-care activities and incorporate
stress and time management, energy conservation, work simplification and
a program of relaxation, stretching and non-fatiguing progressive resistance
exercises (57) into patients' daily routine. The
behavioral plan
is then presented to patients and their significant others at a meeting
with the treatment team. Also discussed are the hypothesized causes
of PPS, the need to modify behavior to treat PPS and the team's expectation
of total compliance with all aspects of the behavioral plan. Patients continue
to keep logs throughout their treatment to document symptoms, the progression
of exercises and modification of behaviors. Logs are reviewed with
patients by each therapist at every treatment session. Goals are reviewed
by the entire treatment team at twice-monthly behavioral
rounds.
Problems with the behavioral plan, especially those having to do with compliance,
are communicated immediately to all members of the team. Significant problems
with compliance may require that patients be called in to meet with the
team. If no significant problems develop, patients meet with the
team once again at the end of the eight to twelve week treatment program.
Compliance problems often arise with the daily log and the behavioral plan. Patients have difficulty keeping the log because it interferes with the compulsive performance of their scheduled activities and forces them to recognize the severity and pervasiveness of their symptoms. Invariably, patients have difficulty in complying with the behavioral plan. They will "forget" to alter their schedules and refuse lifestyle modification because such changes directly conflict with their compulsive, Type A behavior (46). As one patient who was discharged for non-complince angrily stated, "I don't want to change. I just want to be the way I was."
Unfortunately, such problems with compliance are typical of post-polio
patients. One clinic reported that only 41% of patients sporadically
used a newly prescribed brace while 70% refused to use a new cane or crutch
simply because they "didn't want to" (58). Another clinic concluded
that "the major reason for failure (of PPS symptoms) to improve was the
unwillingness of the patient to follow any of the recommendations made"
(59). Peach (60) has documented the importance of compliance with
regard
to the treatment
of PPS muscle weakness, showing that muscle strength decreases over time
only in patients who fail to fully comply with therapeutic recommendations.
During the past year, 47% of the patients treated by this service were
judged to be fully compliant, 34% only partially compliant while 19% were
discharged from therapy for not complying with the behavioral plan.
Of all patients who received an initial evaluation, 28% refused any treatment
for their PPS. It appears that inadequate compliance results in part
from patients' fear of relinquishing compulsive, Type A behavior that is
believed by them to protect against "mortal danger" (15). Some
non-compliant
patients fear that PPS will return them to the same position of helplessness
that they experienced following acute polio (cf. 47). Most report
an even greater fear of criticism and a sense of failure when they merely
contemplate lifestyle changes or the use of new assistive devices, even
though without them PPS symptoms persist, progress and functional ability
deteriorates. Not unexpectedly, inadequately compliant patients have
an elevated mean Sensitivity to Criticism and Failure score (81 ±
20) as compared to fully compliant patients (74 ± 35).
Patients' ability to change their behavior is directly related to their
ability to challenge long-held beliefs about self-worth and survival and
tolerate the emergence of the powerful fears and long-suppressed emotions
generated by the polio experience (41). To promote compliance with
the behavioral plan, cognitive therapy techniques are employed through
weekly individual psychotherapy to identify and modify dysfunctional beliefs,
fears and emotions (46). Learning theory is also employed to explain
how compulsive, Type A behavior was learned to protect against fear, emotional
pain and "mortal danger" (15), while behavior modification techniques are
used to decrease and eliminate these overlearned behaviors (41,46).
As these techniques assist patients to decrease compulsive, Type A behavior,
increased anxiety and fear invariably result. Some patients report
insomnia, panic attacks, intrusive and emotionally-charged flashbacks about
their early polio experience and even fear of impending death (47).
The psychotherapist then helps patients understand the origin of these
most disturbing experiences and learn to tolerate them, reinforces the
new self-care behaviors and supports patients through what can be terrifying
days and nights.
As therapy continues, patients discover that their compulsive, Type A behavior
has been more habitual than necessary. They begin to discard the
"Good List," become better able to care for themselves and begin to believe
that they can have both self-worth and a disability. As the behaviors
and emotions conditioned by the polio experience decrease, the focus of
psychotherapy shifts to the experience of PPS. Depressed mood is
replaced by sadness and anger as the trauma of a "second disability" is
experienced (4). Twice-monthly group psychotherapy provides peer
support to assist patients in dealing emotionally with their PPS and practically
with the lifestyle changes necessary to treat them. The realization
by patients in the group that they are not alone in their painful physical
and emotional experiences is itself powerfully therapeutic. Couples
and family sessions are also employed for both education about PPS and
psychotherapy. It is noteworthy that nearly all spouses, with some
striking exceptions, respond favorably to patients' lifestyle changes with
the most frequently heard comment being, "I've been wanting you to slow
down for years."
All patients treated by this Service, whether fully or even partially compliant, report meaningful reductions in physical and affective symptoms and increased function (cf. 60). But, as fatigue, muscle weakness and pain decrease, patients frequently increase activity and have a tendency to resume compulsive, Type A behavior (46). To prevent this, patients are instructed to strictly adhere to the modified daily schedule as set forth in their behavioral plan, especially after they are discharged from physical and occupational therapies and individual psychotherapy. Patients continue in group psychotherapy for at least six months after discharge, are seen at three-month intervals for medical and psychological follow-up and are encouraged to call their therapists at any time with questions or for support.
Conclusion
It is possible that the large proportion of patients treated by this Service
who have experienced severe psychological trauma as a result of their polio
experience may not be representative of all polio survivors or even of
all individuals who present for treatment of PPS. However, there
is something unique about the experience of polio that predisposes to the
development of compulsive, Type A behavior, sensitivity to criticism and
failure and chronic stress, anxiety and depression: the early onset of
a
universally feared,
potentially life-threatening illness that presented in epidemic proportions;
the experience of severe paralysis that could be forced to recede with
the application of years of strenuous physical therapy; the need to maximize
physical abilities in order to function in a "barrier-full" society that
was repelled by disability; the sparing of intellectual abilities that
were used to overcompensate for residual
physical limitations
(61,62). These factors must be studied if we are to understand the
psychology of the polio survivor, maximize treatment compliance and effectively
treat both the physical and psychological symptoms of PPS.
REFERENCES