Polio survivors in this country are estimated to number between 200,000 and 300,000 (Laurie, 1980; Laurie, Maynard, Fisher, & Raymond, 1984; Roosevelt Warm Springs Institute for Rehabilitation, 1982), and at least 132,000 were struck with the disease during the 1952-54 epidemic alone. Now, decades later, many who felt they had overcome the illness and made their adjustments are beginning to experience increasing weakness and pain, the cause of which is yet to be fully understood. (Halstead & Wiechers, 1985; Laurie, 1980, Roosevelt Warm Springs Institute for Rehabilitation, 1982, 1983).
Typically a loss of strength occurs in muscles that may or may not have been weakened originally. The muscles most commonly affected, however, are those that recovered well from the initial attack, or were not affected at all, and have been used strenuously since (Laurie, 1980). The patient may also experience severe pain in the joints or a generalized aching resembling that of the flu. Headaches, inability to rest, and a profound fatigue are not uncommon. Although the symptoms may be experienced as happening quite suddenly, clinical observation suggests that they actually develop gradually.
The Cause: Is There "Post-polio Syndrome?"
From 20 to 50 percent of polio survivors over 40 years of age are reported as exhibiting latent effects; it is expected that the percentage will increase as the population ages and physicians become more astute in their diagnosis (Halstead & Wiechers, 1985; Horowitz, 1985; Laurie 1980: Laurie et al, 1984). Some controversy exists in the rehabilitation community about the underlying causes of these latent symptoms, frequently referred to as the ``Post-polio Syndrome'' (Laurie et al, 1984). Some fear that this may be either a new illness or a recurrence of the polio virus, which has remained dormant these many years. Thus far no compelling evidence is available to support this latter effect. Some even question whether there is a Post-polio Syndrome: after all, a gradual weakening of muscles from aging can be expected, and the pain may he caused by musculoskeletal problems from the strain on poorly supported joints (Roosevelt Warm Springs Institute for Rehabilitation, 1982, 1983). There is, however, a growing consensus that the deterioration, although a result of the aging process, begins earlier in those who have suffered nerve damage and muscle weakness. Those having had acute polio present a constellation of symptoms that is beginning to he recognized as a clinical entity. One explanation is that the deterioration is due to the accelerated dropping out or death of the anterior horn cells, the motor cell bodies of the nerves that go to the voluntary muscles. Normally, the anterior horn cells slowly drop out when one reaches 60 years of age or older (Laurie, 1980). However, for those who had acute polio, this seems to be happening at a relatively younger age, 25 to 30 years after the initial attack, affecting those who are only in their 30's or 40's.
Difficulties in Diagnosis and Treatment
Because of the success of the polio vaccines, few physicians today have had training or experience in treating polio patients Most health care providers arc unaware of the post polio syndrome and patients become frustrated and scared since they must search and search for help. Misdiagnosis is not uncommon; for example, in some cases patients have been diagnosed as having Amyotrophic Lateral Sclerosis (ALS, or Lou Gherig's disease) because of the similarity of symptoms.
Conflicts Between Physician and Patient
Treatments may not be as successful as hoped for by both patient and physician. Muscles may be too weak for support, bones won't mend, operations may not be successful, and deterioration continues. The physician, out of feelings of impotence and frustration, may become defensive (i.e., avoiding the patient and not answering questions).
Most of the available published material has concentrated on the physical and demographic aspects of the post-polio syndrome, but little has been written about the emotional repercussions (Frick & Bruno, 1986). The present article focuses on the psychological concomitants of this syndrome.
Compounding the emerging physical symptoms is that patients are now being told that the very treatment used years ago (i.e., to exercise as much as possible) may have exacerbated the present condition. Today, these same patients are being told to take it easy and to rest, not to exert themselves, to accept their lessening of strength and stamina.
The Reemergence of the Repressed
Although many of the psychological problems of post-polio patients are similar to those of other physically disabled groups, there is one major difference: the patient now experiences, both physically and emotionally, a recurrence of the disabling disease. The weakness, the pain, and the fear of never being able to walk are reminiscent of the earlier episode, causing the patient to relive much of the overwhelming emotional feelings that had been repressed (Frick & Bruno, 1986).
For years, these repressed feelings and associated memories had been kept in check by the psychological defenses of denial, avoidance, and isolation. For many, these defenses worked well, helping the individual cope with his or her disability. Yet many of these repressed memories and fears from childhood remained unexpressed and distorted in the unconscious. Now, however, under stress, the defenses begin to break down and the repressed feelings rise to the surface, overwhelming the individual. The fact that someone has gone through this before is no reason to assume that it will be easier the second time, or that the person will have a better understanding of the situation. On the contrary, having to relive the experience - an experience that the individual thought had been put to rest - reawakens anxieties and conflicts that he or she had been able to ignore for many years. As one patient exclaimed, ``I thought I had all this behind me; I don't know if I can go through it again.''
Understanding regressive behavior
As most post-polio patients were children or adolescents when they struggled with the disease and its aftermath, clinical observation suggests that many of the needs and behaviors that appear under the new stressful situation are reflective of childhood issues - a reliving of the earlier event. The emerging regressive behavior is often treated as an irritation by the busy physician, yet such behavior is not unexpected, and may be an attempt to regain equilibrium. Not only are the defenses not working, but many of the psychological issues are those that the patient had not been able to work through as a child. What the family, physicians, and rehabilitation personnel see are behaviors and ideation that, on the surface, appear excessive or unrealistic, but are in effect symptoms of the underlying emotional concerns, which cannot find appropriate release.
Distrust of authority
Much of the conflict in dealing with the medical establishment revolves around earlier experiences of hospitalization. Patients were often not dealt with directly, they were allowed to exist with their fantasies of what was happening, or about to happen to them. A lack of trust developed, for example, when patients were told they would not be in the hospital for long, and then found themselves ``trapped'' in the hospital or convalescent home for six months or a year.
Persons with disabilities often go through an adjustment process that has been compared to that of the dying, with the physical deterioration constituting a symbolic or actual death of a part of the body (Dembo, Leviton, & Wright, 1956; Fink, 1967; Kubler-Ross, 1969; Livneh, 1985; Parkes, 1975; Shontz, 1975). For post-polio patients, the recurrence of symptoms may thrust them into the bereavement process once more, and this time the experience is intensified by the reemergence of memories and feelings long repressed. Their feelings are not unlike those of stroke patients when dealing with crises in their illness (Bucher, Smith, & Gillespie, 1984), or cancer patients who are experiencing a recurrence of the disease (Koocher, 1986; Koocher & O'Malley, 1981). Anger and guilt are common emotions that come to the fore during bereavement: now they may he experienced as confusing to patients who feel there should be no reason for them, since such feelings are from the past and should have been dealt with then (Lindemann 1981; Tucker 1984). Anger may he directed at their own fate, at themselves for not having followed medical advice, at parents for not having helped them enough, at family for not understanding their plight or at friends, for the pressure their very presence imposes; guilt may emerge over the anger felt at loved ones or over feelings that their own children's problems may have resulted from the polio, either directly or indirectly.
One stage in the bereavement process is social withdrawal, which may take the form of distancing from family and friends. Although going out and being with others may seem like a positive step in overcoming depression, for the post-polio patient, being with others may increase feelings of uncertainty, anxiety and self-consciousness. Having been the focus of so much scrutiny during the first bout with polio, many of these individuals now feel panic when anticipating social situations. Having been self-sufficient before, help is difficult to accept. The many questions that people ask often do not have ready answers and serve to remind patients that they do not know what is to happen to them. Thus, social interactions can he supportive, but can also be anxiety producing when the coping mechanisms, such as the defense of denial, are weakened
Depression and sadness are normal reactions when a person's level of functioning is decreasing. Poor concentration, sleep disturbance, and decreased interest in activities may be symptomatic of the depressed state. Suicidal ideation may also be a reflection of the person's despair, growing out of the helplessness over the uncertainty of the future.
Summary and Conclusions
As more and more former polio patients enter middle age, what is now a newly recognized problem (i.e., progressive weakness and pain) is expected to become increasingly common. The physical and emotional needs of these patients are only beginning to be understood. Memories, conscious and unconscious, from the initial confrontation with the disease influence their current functioning. Having adjusted to whatever limitation that polio may have imposed on them, many of these patients now feel overwhelmed with the prospects of going through the process again. Compounding this feeling is the unknown course of the disease. Psychotherapists and rehabilitation counselors have a role to play in helping these patients deal with unresolved issues related to their earlier bout with polio and with their present condition, as well as serving as a liaison to medial personnel and the family.