PSN Library Files

THE CAUSE AND TREATMENT OF POST-POLIO FATIGUE

 

Richard L. Bruno, Ph.D., Nancy M. Frick, Lh.D., Susan J. Creange, M.A., Todd Lewis, Ph.D., and Terry Molzen, M.S.

 

From: Healthy Partnerships. Ontario: March of Dimes, 1995

 

Lincolnshire Post-Polio Library copy by arrangement with the Harvest Center Library

 

Fatigue is the most commonly reported, most debilitating and least studied Post-Polio Sequelae (PPS) affecting the nearly 2 million North American polio survivors. Among polio survivors, 91% reported new or in creased fatigue, 41% reported fatigue significantly interfering with performing or completing work and 25% reported fatigue interfering with self-care activities (1,2). Fatigue was reported to be triggered or increased by physical overexertion in 92% and by emotional stress in 61%. Importantly, polio survivors distinguish between the physical tiredness and decreased endurance they associate with new muscles weakness, and a ‘brain fatigue’ that is characterized by problems with attention and thinking. Between 70% and 96% of polio survivors reporting fatigue complained of problems with concentration, memory, attention, word-finding, maintaining wakefulness and thinking clearly, with 77% percent reporting moderate to severe difficulty with these functions (3).

 

Problems with attention, memory and thinking suggest that the symptoms of post-polio fatigue cannot be explained merely by the poliovirus damaging anterior horn motor neurons (4). Autopsies performed fifty years ago on people who died after having had polio, whether they had paralysis or not, showed that the poliovirus almost always damaged specific areas in the brain (Figure 1). These damaged areas include the brain’s activating system that keeps you awake and allows you to focus your attention. The poliovirus also damaged neurons that produce neurotransmitters, including the enkephalins and endorphins (called the “body’s own morphine”) as well as dopamine and ACTH which activate the brain.

 

With poliovirus damaging the brain’s activating system, you would expect that the original polio infection should cause brain activating problems. And, reports written during the polio epidemics did describe “drowsiness,” lethargy, prolonged sleeping and even coma during the acute polio infection (7,12,21,22). One-third of patients with acute spinal, spinal and bulbar and even non-paralytic polio showed “disorientation, apathy, pronounced sleep disorder (and) irritability” (4). These mental changes were associated with the abnormal slowing of brain wave activity on the electroencephalogram (EEG). Further,

 

a high percentage of children clinically recovered from poliomyelitis insofar as motor disability is concerned, had qualitative difficulties in mental functioning such as “fatiguability and fleeting attention” for months after the acute polio (5).

 

These reports of persistent drowsiness, fatigue and fleeting attention following the acute poliovirus infection are similar to polio survivors’ recent complaints of late-onset fatigue and impaired attention (25). And, both acute and late-onset post-polio fatigue are reminiscent of nearly two dozen outbreaks during this century of post-viral fatigue syndromes (PFS) that are related clinically, historically or anatomically to poliovirus infections (26-28). These relationships and recent studies comparing post-polio fatigue and chronic fatigue syndrome will be described in an attempt to understand the cause and treatment of postpolio fatigue.

 

CAN THE POLIOVIRUS CAUSE FATIGUE?

 

Type II Poliovirus and Decreased Brain Activation. During the polio epidemics of the 1950’s, there were several small outbreaks of patients having drowsiness, prolonged sleeping, slowing of brain waves, as well as some of the symptoms of both bulbar polio and Parkinson’s disease (e.g., tremor and rigidity) (29- 30). In 1952, Type II poliovirus was isolated from one group of patients having these symptoms and it was found that the neurons in their brain activating system had been damaged.

 

The association of decreased brain activation and Parkinson’s disease symptoms remind Dr. Oliver Sacks of the “sleeping sickness” patients with Parkinson’s disease he described in his book Awakenings. The relationship between “sleeping sickness,” Parkinson’s disease and polio may be important for understanding post-polio fatigue, since all of these have conditions are associated with damage to a part of the brain activating system called the basal ganglia. For example, Parkinson’s disease (PD) patients have severe damage to one of the basal ganglia, the substantia nigra (sub-STAN-sha NYE-gra), which produces the neurotransmitter dopamine (doe-PAH-mean). PD patients often describe fatigue. “Excessive fatigue” was reported by 48% of PD patients in one study (40) while nearly one-third of PD patients reported that fatigue was their “most disabling symptom” (39). As a matter of fact, one of the first descriptions of Parkinson’ s disease (41) could serve as a definition of post-polio fatigue, i.e., a syndrome “characterized by a diminution of voluntary attention, spontaneous interest, initiative and the capacity for effort and work, with significant and objective fatiguability, and a slight diminution of memory” (38).

 

FIGURE UNAVAILABLE

 

Figure 1.

 

Brain areas lesioned by the polio virus as seen in 158 human autopsies. Severe lesions: Reticular formation (RF); vestibular nuclei (V); cerebellar roof nuclei (R); periaquiductal gray (PG). Moderate lesions: Paraventricular hypothalamic nucleus (PV); posterior hypothalamic nuclei (P); substantia nigra (SN). Mild lesions: Globus pallidus and putamen (GP); locus ceruleus (LC); median raphe nuclei (MR); preoptic hypothalamic nuclei (PO); thalamic nuclei (T).

 

“Atypical Poliomyelitis” and Chronic Fatigue. Beginning in Los Angeles in 1934 and continuing for more than twenty years, there were over a dozen outbreaks of a disease that was at first thought to be poliomyelitis, was then called “abortive” or “atypical” poliomyelitis and finally named “Myalgic Encephalomyelitis” (ME) (6). Like poliomyelitis, initial symptoms of ME included headache, neck pain, low-grade fever and muscle pain that were often followed by muscle weakness. Patients were excessively sleepy and had “conspicuous changes in their levels of concentration” that lasted for months after the initial illness. Slowing of the EEG similar to that seen in acute polio was also noted.

 

Unlike poliomyelitis, there were frequent complaints of numbness or tingling, usually no breathing problems, paralysis or muscle wasting and almost invariably no deaths. Also unlike poliomyelitis, recovery from the initial symptoms of ME sometimes required months with most patients being left with a marked “exhaustion and fatiguability” that were “always made worse by exercise (and) emotional stress.” Patients continued to have fatigue, excessive sleepiness, trouble concentrating, difficulty with word finding, memory and thinking for years after the acute episode.

 

Despite the differences between poliomyelitis and ME, an association with the poliovirus was suggested by the fact that, of the more than one dozen ME outbreaks before the introduction of the Salk vaccine, nine occurred during or immediately after outbreaks of polio and several involved hospital staff who cared for polio patients (7).

 

Type III Poliovirus and Chronic Fatigue in Iceland. A more direct association between the poliovirus and ME was seen in 1948 in Akureyri, Iceland. Patients there presented with fever, muscle pain and weakness and were at first diagnosed as having poliomyelitis. After about a month , this diagnosis was discarded as patients reported additional symptoms not typical of polio, including tingling, numbness, “nervousness” and “general tiredness.” Also unlike poliomyelitis, no deaths were reported and poliovirus was never isolated from any of these patients. When patients were reexamined six years after their original illness, 72% still had chronic “nervousness and general tiredness” and 21% reported a of “loss of memory.”

 

It was suggested that either an “unusual” and mild poliovirus or some unknown virus caused these symptoms that were called “Akureyri Disease” but are more commonly referred to as “Iceland Disease” (ID). Support for an “unusual” poliovirus as the cause came in 1955 (10). There was an extensive epidemic of poliomyelitis in Iceland caused by Type I poliovirus that coincided with and was followed by outbreaks of ID. Remarkably, two cities in which ID outbreaks were reported in 1955, as well as the area affected by the 1948 “Akureyri Disease” epidemic, were untouched by poliomyelitis. None of the children tested in the two ID-affected cities and only 13% of the children in Akureyri had antibodies to Type I poliovirus as opposed to 86% of the children tested in the polio epidemic areas. Further, following poliovirus immunization, children in one of the ID-affected cities demonstrated antibody titres to Type II and Type III polio virus that were four and twenty-five times higher than titres in a city where ID had not been reported. It was concluded that Type I poliovirus was not the cause of ID, but the citizens of the IDaffected areas had previously been exposed to something that was immunologically similar to Type III poliovirus.

 

An interesting coda to these findings is the report that when an American airman who had contracted polio in the 1955 Iceland epidemic returned to Massachusetts, a small outbreak of ID and polio occurred (11). More recent support for a relationship between poliovirus and ME came in 1989 when a “dangerously rising titre” to Type III poliovirus was documented in a patient who did not have polio but had been diagnosed with ME (12).

 

Post-Polio Fatigue and Chronic Fatigue Syndrome. A group of symptoms resembling ME was termed “Chronic Fatigue Syndrome” (CFS) following a Nevada outbreak in 1984 (13). Like ME and post-polio fatigue, CFS is characterized by complaints of chronic fatigue and trouble with concentration, memory and word finding that are triggered or exacerbated by physical exertion and emotional stress. And, although polio survivors are on average at least ten years older than patients with CFS, the years of education, sex distribution, frequency of difficulty with concentration and psychological symptoms are nearly identical in the two groups (Table 1)(17,18,19). However, unlike ME and PPS, CFS patients report recurring sore throat, swollen glands and fever, suggesting to some that CFS is caused by a recurring or chronic viral infection. It is important to keep in mind that there is no evidence that PPS is caused by a

 

persistent infection by any virus, including poliovirus (14,15).

 

Polio Survivors	CFS Patients
Sample Size	276	²	259
Age 54 (±11)	² 39 (±12)
College Graduates 40% ² 40%
% Female 73% ² 68%
I.Q. 111 (± 2) ³ 111 (± 4)
Difficulty with:
Concentration 85% ² 82%
Word Finding 82% ²
Fatigue
does not impair functioning 21% ¹ 0%
limits only social activities 13% ¹ 43%
impairs work or self-care ability 66% ¹ 57%
Depressive Symptoms 61% ² 68%
Anxiety 74% ² 71%

Table 1.

 

Comparison of demographic data and symptom frequency in polio survivors reporting fatigue and in patients with Chronic Fatigue Syndrome (CFS). ¹ : Bruno and Frick, 1987; ² : Bruno, et al., 1991; ³: Bruno, et al., 1993; : Buchwald, et al., 1992.

 

The recent occurrence of CFS has allowed it to be studied using techniques that were not available during the polio, ME and ID epidemics and now allow neuropsychologic, neuroanatomic and neuroendocrine comparisons between this newest PFS and post-polio fatigue.

 

COMPARISONS OF POST-POLIO FATIGUE AND CFS

 

Neuropsychologic Studies. Some of the subjective difficulties with attention and cognition in CFS patients and polio survivors have been confirmed with neuropsychologic testing. CFS patients and polio survivors with severe fatigue have been shown to have clinical impairments of attention and information processing speed (Table 1)(16,19). Polio survivors reporting severe fatigue required 23% to 67% more time to complete tasks requiring sustained attention and vigilance than did polio survivors with no or mild fatigue. In spite of these marked impairments of attention, CFS patients and polio survivors have been shown to have I.Q.s within the high normal or superior range and have higher than average levels of educational and professional achievement (Table 1)(17). Further, despite the high frequency of subjective complaints of memory impairment in CFS patients and in 87% of polio survivors reporting fatigue, verbal memory has been shown to be intact on testing in both groups (16,19,20). However, polio survivors have twice been shown to have trouble recalling visual information whether or not they report fatigue (7,16).

 

These findings indicate that fatigue in CFS patients and polio survivors is associated with impairment of attention and information processing speed but not of memory or thinking ability. Given the findings of frequent and severe poliovirus lesions in the brain’s activating system, it was hypothesized that damage to

 

the brain’s activating system is responsible for both fatigue and impaired attention in polio survivors.

 

Brain Scan Studies. To test this hypothesis, magnetic resonance imaging (MRI) of the brain was performed to look for evidence of poliovirus lesions in the brain’s activating system. In a first study, small areas of hyperintense signal (which look like white spots) on MRI were seen in the brain’s activating system and in the myelinated (insulated) neurons that connect the brain stem (at the bottom of the brain) to the cortex (the ‘supercomputer’ at the very top of the brain) in eleven of twelve polio survivors (1). In a second study, white spots were seen in 55% of polio survivors with fatigue but were not seen in any of the subjects without fatigue (Figure 2)(21). The presence of the white spots were not only related to increased fatigue severity, but also to problems with memory, thinking clearly, mind wandering, attention and concentration.

 

FIGURE UNAVAILABLE

 

Figure 2.

 

A 24 mm² focus of hyperintense signal (arrow) in the centrum semiovale in a 50 year old female polio survivor reporting moderate daily fatigue and frequent problems with concentration, thinking clearly, short term memory and staying awake (putamen lesion not seen in this view).

 

Hormonal Studies. The association of white spots in the brain activating system with the symptoms of post-polio fatigue suggested that the effects of poliovirus on other brain areas might also be evident in polio survivors. For example, poliovirus lesions were often seen on autopsy in the hypothalamus (hypoTHAL-ah-mus), the brain area that automatically controls the body’s internal environment and its response to stress.

 

To test the functioning of the hypothalamus, we measured polio survivors’ blood concentrations of ACTH (a-DRE-no cor-ti-co-TRO-pick hormone), one of the body’s stress hormones whose release is triggered by the hypothalamus. ACTH was measured following an an overnight fast, which is a mild stress known to cause the release of ACTH (7). ACTH was increased outside of the normal range (as it should be following stress) in polio survivors who reported mild fatigue. However, there was no ACTH increase in subjects reporting severe daily fatigue. Further, the higher the ACTH level, the lower the subjects’ reported fatigue and the less the difficulty with memory, word finding, muscle weakness and staying awake during the day.

 

These findings indicate that the hypothalamus had not been activated in the subjects with post-polio fatigue and that ACTH production is reduced in these individuals. This conclusion is interesting for two reasons. First, ACTH has been found in humans to promote alertness, increase attention and decrease fatigue by directly stimulating the brain activating system. Thus, a decrease in ACTH production may prevent brain activation and contribute to the symptoms of post-polio fatigue. Decreased activation of the hypothalamus has already been found in patients with CFS and a decrease in ACTH stimulation of the brain has been suggested as a cause of CFS (23).

 

Second, a decrease in ACTH production may be caused by a decrease in production of its parent molecule, POMC. POMC also produces beta-endorphin (BAY-ta en-DOOR-fin) which along with the enkephalins (en-KEF-ah-lins) are ‘the body’s own morphine.’ Since poliovirus also damaged the brain area that produces enkephalins, both beta-endorphin and enkephalin production may be reduced in polio survivors. A reduction in the body’s own morphine would help to explain why polio survivors have a nearly doubled sensitivity to pain (1).

 

A MODEL FOR POST-POLIO AND CHRONIC FATIGUE

 

Taken together, these findings suggest a model for the cause of post-polio fatigue:

 

Poliovirus damaged the brain activating system;

 

MRI and hormonal findings suggest that damage to the brain activating system is present today in polio survivors;

 

Neuropsychological testing shows impaired attention in patients with post-polio fatigue; Therefore, poliovirus damage to the brain’s activating system may cause decreased brain activation, impair attention and generate the symptoms of post-polio fatigue.

 

While poliovirus damage to the brain activating system would be expected to cause the sleepiness, inattention and fatigue reported during the original polio infection, it is the recurrence of these symptoms, or their appearance decades after the acute infection, that are more difficult to explain. The emergence of fatigue decades after the acute polio may result from normal age-related changes in and loss of brain activating system neurons that had survived the acute polio infection, combined with an already decreased number of neurons as a result of the original poliovirus infection. Eventually, the loss of brain activating system neurons would decrease cortical activation, reduce attention and produce the symptoms of fatigue as polio survivors reach mid-life (1). The occurrence of these symptoms during physical or emotional stress in polio survivors may reflect the ability of stressors to uncover otherwise unseen damage in the brain activating system.

 

IS FATIGUE ‘HARD WIRED’ INTO THE BRAIN?

 

The findings presented above describe an intimate relationship between impaired attention and fatigue. However, difficulty with attention is not fatigue’s only symptom. Even more disabling is the physical experience of fatigue: feelings of exhaustion, ‘passivity and an aversion to continued effort’ that generate an aversion to both mental and physical activity. However unpleasant these feelings are in man, passivity and aversion to activity have clear survival value, especially in organisms without conscious awareness that their attention and thinking speed are impaired. For example, an animal that continues to explore its environment even though its attention is impaired would be less able to direct attention on the goal of its exploration (e.g., searching for food) and would thereby waste already diminishing energy stores. More importantly, impaired attention could also render the animal unaware of dangers in its environment (e.g., a predator stalking the animal in search of its food). Thus , there would be survival value in a brain mechanism that monitors cortical activation, biases an animal toward stopping motor behavior and promotes rest when attention and thinking speed are impaired.

 

The Brain ‘Listens’ to Itself. Groups of neurons near the bottom of brain called the basal ganglia are in an ideal location to monitor the level of brain activation and stop an animal when it has too little attention to allow efficient and safe activity in its environment. All parts of the cortex connect to one of the basal ganglia, called the putamen (pew-TAY-men), which ‘listens’ to the activity level of the brain (24). If the brain is awake enough, the putamen allows us to focus attention, to move and to act. When the brain activating system turns down, the putamen stops the cortex from allowing us to move. Damage to the putamen in animals has been shown to slow movement, while damage to another of the basal ganglia, the substantia nigra, decreases or even stops movement and prevents us from focusing attention (7).

 

The importance of the basal ganglia – and especially the neurotransmitter dopamine – in focusing attention and allowing us to move is most evident in patients with Parkinson’s disease (PD). PD patients, whose damaged substantia nigra neurons produce too little dopamine, show not only slowed movement and an inability to focus attention but also excessive and disabling fatigue (7,38-41). And, remember Oliver Sacks’ Awakenings patients whose damaged basal ganglia caused both Parkinson’s disease and ‘sleeping

 

sickness.’

 

The Brain Fatigue Generator. It appears that the basal ganglia could produce the mental and physical symptoms of both normal and pathological fatigue. In normal fatigue, a long and hard day of work would slow the firing of brain activating system neurons. This decreased activity would impair attention and information processing ability (recognized by humans as symptoms of fatigue) and produce a decrease in cortical activation that would slow the firing of putamen neurons, prevent the release learned motor behaviors and slow or stop activity (Figure 3). Humans would notice problems with focusing attention, feel an aversion to activity and would be able to move only with significant conscious effort. Animals would slow or even stop their activity. In both man and animals, rest or sleep would increase the firing of brain activating system neurons, restore cortical activation, increase the firing of putamen neurons and once again allow the release of motor behavior.

 

FIGURE UNAVAILABLE

 

Figure 3.

 

A model for the brain fatigue generator. Fatigue would be produced by a reduction in reticular activating system (RAS) activity that would directly decrease cortical activation, impair attention and cognition and prevent the firing of putamen neurons (dark lines). The reduction in putamen activity would then inhibit the release of motor behavior, further decrease attention and produce the visceral feelings of ‘exhaustion’ and aversion to effort that accompany fatigue (stippled lines).

 

Pathological states such as chronic fatigue syndromes could be produced by viral damage to the brain activating system, putamen and/or dopamine-producing neurons. This damage would chronically reduce the firing of brain activating system and putamen neurons, decrease cortical activation and produce the symptoms of fatigue. Poliovirus would be expected to cause fatigue, impaired cortical activation and decreased attention since it damages all of these brain areas.

 

CLINICAL IMPLICATIONS

 

This description of the basal ganglia as the brain fatigue generator suggests that increasing brain levels of dopamine (the neurotransmitter that stimulates the basal ganglia) might ‘turn on’ the brain activating system, increase cortical activation and attention, release motor behaviors and reduce the symptoms of chronic fatigue. We are currently studying the use of a drug that stimulates dopamine receptors on brain neurons to treat post-polio patients whose fatigue has not responded to the current treatments of choice, i.e., adequate rest, energy conservation, the pacing of activities and reducing physical and emotional stress (2,17,27,28). Preliminary results show that fatigue, impaired attention and difficulty staying awake during the day decrease as the dose of the drug increases.

 

However, there is the very real danger that taking a drug that reduces fatigue will allow polio survivors to resume their hyperactive, Type A lifestyles (as they do now when they feel better following physical, occupational and psychological therapy for PPS) and further stress poliovirus-damaged, ‘metabolically vulnerable’ neurons in the brain and spinal cord. Decreasing ‘overuse abuse’ will always be necessary to treat PPS, regardless of whether a drug is found that decreases the symptoms of fatigue.

 

It is also possible that damage to the basal ganglia and a lack of dopamine may be related to other PPS symptoms. Word finding difficulties, reported by 82% of polio survivors with fatigue, appear similar both to word finding problems reported by CFS patients and the ‘tip-of-the-tongue’ phenomena seen in PD patients (Table 1)(1,7). And, in a study we have just completed, polio survivors with severe fatigue had low scores on a test of word finding ability – scores that were identical to those in Parkinson’ patients.

 

In addition, 63% of polio survivors report Generalized Random Myoclonus (GRM), the slow contraction or rapid twitching of hand, arm, trunk and leg muscles at night that disturb sleep in 33% of polio survivors (2). GRM may provide more evidence that polio survivors have a brain dopamine shortage, since GRM are similar to “periodic movements in sleep” seen in PD patients.

 

We continue to examine the possible role of the basal ganglia and dopamine in PPS to help identify the cause and treatment of not only post-polio fatigue, but also other PPS, CFS and to understand the neurophysiology of fatigue itself.

 

ACKNOWLEDGEMENTS

 

The authors gratefully acknowledge the participation of the subjects, the support of the Joel Leff Charitable Trust and Deluxe Corporation , the continued support of the George Ohl, Jr. Foundation, and the efforts and expertise of Mary Ann Solimine, R.N., M.L.S., without whom this work would not have been possible. We also thank Drs. Leonard Kurland and Oliver Sacks for their criticisms of the manuscript and Esther Carlton of Nichols Institute who provided the 11:00 AM norms for cortisol and ACTH.

 

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References 29, 38-41 not listed in source document.

 

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Document Reference: <URL:http://www.zynet.co.uk/ott/polio/lincolnshire/library/harvest/fat.html> Created: 8th February 1997

 

Last modification: 29th January 2010.

Predicting Hyperactive Behavior as a Cause of Non-Compliance with Rehabilitation: The Reinforcement Motivation Survey Dr. Richard L. Bruno

 

Lincolnshire Post-Polio Library copy by arrangement with the Harvest Center Library

 

Post-Polio Rehabilitation and Research Service Kessler Institute for Rehabilitation

 

Saddle Brook, New Jersey

 

Running Head: Hyperactive Non-Compliance

 

Descriptors: Non-compliance; Chronic Pain; Type A Behavior; Post-Polio Sequelae.

 

Address all correspondence and reprint requests to: Dr. Richard L. Bruno,

 

Post-Polio Rehabilitation and Research Service, Kessler Institute for Rehabilitation,

 

300 Market Street,

 

Saddle Brook, New Jersey 07662.

 

(201) 368-6057

 

ABSTRACT

 

Non-compliance with therapy is a significant problem in vocational rehabilitation. Significant amounts of professional time and money are wasted treating patients who are unwilling or unable to participate in their own rehabilitation. The client with chronic musculoskeletal pain – depressed, without energy (i.e., “anergic”) and refusing to attend therapy – is the exemplar of non-compliance. However, clients with chronic pain and other disabilities demonstrate a different type of non-compliance, characterized by chronic hyperactivity and refusal to decrease behaviors that are known to maintain or increase symptoms. To document the occurrence of hyperactive non-compliance, 80 clients treated for chronic musculo

 

skeletal pain (CMP) and 41 clients treated for Post-Polio Sequelae (PPS) were studied prospectively and administered the Beck Depression Inventory (BDI) and the Reinforcement Motivation Survey (RMS). Forty percent of the CMP clients and 79% of the PPS clients who were discharged from therapy demonstrated hyperactive non-compliance. CMP clients as a group had significantly elevated BDI and RMS Type A behavior and Negative Reinforcement Motivation scores, while PPS clients as a group had elevated Sensitivity to Criticism and Failure scores, as compared to controls. Significantly elevated Type A behavior and Sensitivity to Criticism and Failure scores were associated with hyperactive noncompliance as well as completion of therapy. These findings indicate that hyperactive non-compliance is an frequent cause of treatment failure in rehabilitation clients and that the RMS may be of use in identifying potentially non-compliant clients and the form non-compliance will take. The design of individualized rehabilitation programs to manage non-compliance and maximize the probability of completing therapy is described.

 

Predicting Hyperactive Behavior as a Cause of Non-Compliance with Rehabilitation: The Reinforcement Motivation Survey.

 

Refusal to comply with therapeutic recommendations or prescribed therapies is a significant problem in medicine (Cameron and Gregor, 1987). Clients with conditions ranging from arthritis (Jette, 1982) to diabetes (Ekerling and Kohrs, 1984) often refuse to follow daily dietary and exercise regimens, while more than half of clients with hypertension or tuberculosis were found to refuse continued medical care

 

(Sackett and Snow, 1979)

 

Non-compliance is also a common problem in rehabilitation. Many clinicians point to the client with chronic musculoskeletal pain, especially low back pain, as the exemplar of non-compliance (Blumer and Heilbronn, 1981; King and Snow, 1989). Chronic musculoskeletal pain (CMP) clients are described as having a premorbid history of hyperactivity, characterized by their performing in “a slave-like manner, working and keeping active beyond average expectations” in order to provide for the needs of others (Blumer and Heilbronn, 1982). Such excessive caretaking is believed by these individuals to be required for their acceptance by family, friends and employers, and is said to protect against excessive sensitivity to criticism and profound feelings of “insecurity and guilt” (Blumer and He ilbronn, 1982).

 

Hyperactivity is said to persist until “a minor injury provide(s) a rational and socially acceptable” reason for ceasing excessive caretaking and becoming dependent on others (Gentry, et al., 1974). The cessation of hyperactive caretaking of others is thought to trigger a “depressive disorder” which causes both chronic pain and “a disabling degree of anergia” (i.e., a profound lack of energy and activity). This disabling anergia becomes evident when CMP clients “completely lose their initiative and zeal for work” (Blumer and Heilbronn, 1981). They become “helpless sufferers” waiting to be “spoiled and cared for continuously” and are disinterested in participating in a rehabilitation program designed to help them tolerate their pain and decrease their disability (Blumer and Heilbronn, 1982).

 

This description of the depressed, anergic CMP client as the exemplar of non-compliance is not consistent with our experience. While it does appear that many CMP clients are premorbidly hyperactive, not all chronic pain clients become depressed, anergic, helpless and dependent following injury. Even after pain onset, a large minority of CMP clients refuses to reduce their premorbid level of hyperactivity. They vigorously maintain their independence and continue to work excessively, caring for others, even though their hyperactivity maintains or exacerbates the pain. These clients often report that they are “overcome by guilt” if they reduce their caretaking of others. Further, it is persistent hyperactivity, and not depressive anergia, that prevents these clients from complying with treatment recommendations or even attending

 

therapy sessions and causes them to be discharged from the pain management program.

 

Recently, another group of rehabilitation clients who also demonstrate hyperactivity and therapeutic noncompliance has been described: the 1.63 million survivors of America’s polio epidemics (Frick and Bruno, 1986). Like hyperactive CMP clients, polio survivors vigorously strive to maintain their hard-won independence and work excessively, also performing in a slave-like manner, keeping active beyond average expectations in order to provide for the needs of others (Bruno and Frick, 1991). For example, polio survivors have been found to work significantly more overtime hours per week, regardless of the severity of their disability, than do their non-disabled peers (Lonnberg, 1993). Further, two national surveys have found that polio survivors on average demonstrate significantly more hard-driving, pressured, over-achieving Type A behaviors than do the general population (Bruno and Frick, 1987;1991; Rosenman, et al., 1964). The experience of polio has been suggested to provide the ideal environment for the development of the Type A personality, since hyperactive Type A behaviors are said to be learned in service of the “active avoidance of punishment” (Perkins, 1984) by individuals with “low social support and self-esteem” (Powell, et al., 1984) who are involved in a chronic “struggle to overcome environmental barriers” (Rosenman, 1964). And, polio survivors, like hyperactive CMP clients, persist in their hyperactivity even though it has been shown to cause and exacerbate Post-Polio Sequelae, the late-onset symptoms that include muscle and joint pain, overwhelming fatigue and muscle weakness (Bruno and Frick, 1986;1991).

 

Surprisingly, there have been few studies that document the frequency and examine causes of noncompliance in rehabilitation. Many studies of pain management program outcome have actually excluded non-compliers from their analyses (Aronoff and Evans, 1982; Chapman, et al., 1981; Gluck, et al., 1986: Maruta, et al., 1987; Painter, et al., 1980). King and Snow (1989) did compare CMP clients who “were discharged from or left” their inpatient pain program, but the behaviors that prompted discharge were not specified.

 

This paper describes

 

1. the frequency of anergic and hyperactive behaviors as causes of non-compliance with therapy in

 

rehabilitation,

 

2. the development of an instrument that measures the behaviors and motivational factors associated

 

with therapeutic non-compliance and helps to identify potentially non-compliant clients and

 

3. the creation of individualized rehabilitation plans that incorporate client management strategies to

 

minimize non-compliance and maximize the probability of clients completing rehabilitation and

 

returning to work.

 

METHODS

 

Subjects. Eighty consecutive clients admitted to the Pain Management Program over two years were studied. They had a history of 3.2 (+/- 3.5) years of musculoskeletal back and/or neck pain as a result of motor vehicle or work-related accidents. This chronic musculoskeletal pain (CMP) group consisted of 44 females and 36 males with a mean age of 39.8 (+/- 10.4) years having had 13.2 (+/- 2.6) years of education.

 

Forty-one polio survivors consecutively admitted over two years to the Post-Polio Service with a diagnosis of Post-Polio Sequelae (PPS) were also studied. The PPS group consisted of 32 females and 9 males with a mean age of 47.7 (+/- 11.4) years having 14.4 (+/- 2.1) years of education who reported new PPS symptom an average of 42 (+/- 8.0) years after having had polio.

 

Reinforcement Motivation Survey. The Reinforcement Motivation Survey (RMS) is a 36 item, forced choice questionnaire containing three scales designed to measure behaviors and motivational factors that have been noted in non-compliant clients: a Brief Type A behavior scale, a scale measuring negative reinforcement motivation and a scale measuring sensitivity to criticism and failure (Table 1).

 

Type A Behavior scale. Since the hyperactive behaviors seen in CMP and PPS clients appear similar to the behaviors characteristic of the Type A personality (Rosenman, et al., 1964), the 10 item brief Type A Behavior scale developed by Young and Barboriak (1982) was administered (Table 1). The TAB score was elevated when respondents agreed that they performed work in a excessive, driven, angry or competitive manner uninterrupted by rest or vacation.

 

Negative Reinforcement Motivation scale. Our CMP and PPS clients often report that their hyperactive behavior is not motivated by others’ praise or personal satisfaction but by a compelling noxious internal drive that ceases only when tasks performed for or required by others are successfully completed. Behavior motivated by an attempt to reduce a noxious stimulus is called negative reinforcement in learning theory, but is usually described by our hyperactive clients as “guilt.” Motivation resulting from negative reinforcement is consistent with the suggestion that hyperactivity protects against life-long feelings of guilt. (Blumer and Heilbronn, 1982; Bruno and Frick, 1991; Van Houdenhove, et al., 1987).

 

The 18 item RMS Negative Reinforcement Motivation scale (Table 1) was designed so that the scale score was elevated when respondents agreed that they were uninterested in others’ appreciation of or praise for their work, focused on only one task at a time and were motivated by their own internal sense of discomfort that decreased only when they worked continuously and completed tasks quickly.

 

Sensitivity to Criticism and Failure scale. Hyperactivity in CMP and PPS most often appears to serve the needs or expectations of others. This is consonant with the suggestion that hyperactivity is an attempt to protect against chronic insecurity and low self-esteem by preventing criticism or punishment by others and a sense of personal failure (Blumer and Heilbronn, 1982; Bruno and Frick, 1991; Perkins, 1984; Powell, et al., 1984; Van Houdenhove, et al., 1987)

 

The 8 item Sensitivity to Criticism and Failure scale (Table 1) was designed so that the scale score was elevated when respondents agreed that they were motivated by the need to please others, that they ruminated about past mistakes and that their self-image and affect were negatively impacted by a lack of success in their work or the critical comments of others.

 

Scoring. Items answered correctly on each scale (correct answer given in parenthesis in Table 1) were given a score of one, while those answered incorrectly were given a score of zero. The total scale scores were calculated by summing the individual item scores, dividing by the number of scale items and multiplying by 100.

 

RMS Normative Sample. The validity and reliability of the RMS were assessed on 125 individuals without CMP, polio or other disabilities. Clients were asked to provide their own controls by asking friends and relatives to complete the RMS. Item analysis was conducted by using product-moment correlations to relate responses on individual items with the total score for each scale. Correlations ranged from 0.18 to 0.59 for the Type A behavior items, from 0.17 to 0.49 for the Negative Reinforcement scale items and from 0.39 to 0.34 for the Sensitivity to Criticism and Failure scale items (Table 1).

 

The Type A behavior scale correlated 0.09 (p=N.S.) with the Negative Reinforcement scale and 0.29 (p=0.02) with the Sensitivity to Criticism and Failure scale. The Negative Reinforcement and Sensitivity to Criticism and Failure scales correlated -0.17 (p=N.S.) with each other.

 

Two pair of items with similar content were included in the Negative Reinforcement and Sensitivity to Criticism and Failure scales to assess reliability by measuring internal consistency. The Spearman-Brown formula, applied to phi correlations calculated for each pair of item scores, estimated full-scale reliabilities of 0.87 for the Negative Reinforcement scale and 0.79 for the Sensitivity to Criticism and Failure scale (Anastasi, 1988). The reliability of the Type A Behavior scale is given by Young and Barboriak (1982).

 

PROCEDURE

 

Clients were administered the Reinforcement Motivation Survey (RMS) and the Beck Depression Inventory (BDI) (Beck, et al., 1961) during the initial evaluation. Clients were directed to complete the RMS based on how they usually thought, felt or acted prior to the onset of pain or PPS symptoms and to answer the BDI questions on the basis of how they felt during the preceding week.

 

Clients in both groups were prescribed individualized rehabilitation programs including physical and occupational therapy, individual and group psychotherapy and EMG biofeedback. The CMP rehabilitation program was designed to eliminate the use of narcotic drugs and assistive devices, decrease anergic or hyperactive behaviors, prescribe stretching and endurance exercises and increase the level of personal and vocational functioning. The PPS rehabilitation program was designed to decrease pain, fatigue and muscle weakness by teaching energy conservation, work simplification and time management, prescribing nonfatiguing exercise and needed assistive devices (Bruno and Frick, 1991). CMP outpatients received three one hour sessions while PPS outpatients received two one hour sessions of physical and occupational therapy per week. CMP or PPS inpatients received 17.5 hours of physical and occupational therapy per week. All clients received one hour per week of individual psychotherapy; CMP clients received four hours per month and PPS clients two hours per month of group psychotherapy. A complete rehabilitation program lasted from eight to twelve weeks.

 

Definition of Non-Compliance. Two types of non-compliance were noted: clients either failed to increase or decrease their levels of activity. For example, clients who failed to increase their level of activity refused to leave bed in the morning, returned to bed prematurely or remained sedentary during the day. Some also failed to attend therapy sessions or left sessions prematurely, failed to perform the prescribed number or type of therapeutic activities or exercises, failed to correct poor posture or to independently perform self-care activities (e.g., failed to stop asking others to help with ADLs). Non-compliant CMP clients also failed to discard unnecessary assistive devices (e.g., a cane, crutch or wheelchair). These types of behaviors were termed anergic non-compliance.

 

The second type of non-compliance was characterized by clients failing to decrease their general level of activity and eliminate behaviors that had been identified as maintaining or exacerbating their symptoms. Typically, these clients failed to attend therapy sessions, perform prescribed physical therapy, relaxation and biofeedback exercises or take prescribed breaks during the day because of schedules that burgeoned with numerous activities in service of employers, social organizations, family members and friends. Clients also failed to decrease the number, duration , intensity or extent of their daily activities or to request appropriate assistance in performing them. PPS clients failed to keep daily activity and symptom logs or to use newly prescribed assistive devices (e.g. a cane, crutch, brace or wheelchair). These types of behaviors were termed hyperactive non-compliance.

 

Discharge Procedure. When non-compliant behaviors were observed by the treatment team, the need for their alteration was discussed with the client. If the behaviors did not change by the next therapy session, a behavioral contract was written by the team that detailed the specific behavior(s) to be altered and stated that the client would be discharged from all therapies if a behavior change was not effected. The contract

 

was presented to the client by the treatment team and signed by the client.

 

If the client refused to sign the contract, he was immediately discharged from all therapies until he was willing to participate in the rehabilitation program. If the client signed but failed to comply with the contract by the next therapy session the client again met with the team. The non-compliant behavior(s) were again discussed and the terms of the contract reiterated. The client was immediately discharged from all therapies if the contract was violated a second time and readmitted only when he was willing to participate in the rehabilitation program. Clients were classified as anergic or hyperactive non-compliers depending upon the type of behavior they emitted that caused their discharge from therapy (see above).

 

Data Analysis. Descriptive statistics were calculated for all variables. Two-tailed independent-groups ttests, with p values corrected for multiple comparisons using the Bonferroni inequality, were used to compare the control subject’s BDI and RMS scores to those of the CMP and PPS client groups (Table 2) and the three outcome subgroups (those who completed rehabilitation or were discharged for anergic or hyperactive non-compliance) (Table 3) and within the three outcome subgroups.

 

RESULTS

 

Twenty-five (31%) of the CMP clients and 14 (34%) of the PPS clients were prematurely discharged for non-compliance with their rehabilitation program. Fifteen (18%) CMP clients and 3 (7%) PPS clients were discharged for anergic non-compliance, while ten (13%) CMP clients and 11 (27% ) PPS clients were discharged for hyperactive non-compliance.

 

CMP clients were significantly younger (40 +/- 10 years) than the controls (50 +/- 13 years)(t=5.91; p < 0.01) and PPS clients (48 +/- 11 years)(t=3.83; p<.01). However, there were no significant differences in age within the CMP or PPS outcome subgroups or in years of education between the CMP and PPS groups or within the outcome subgroups. There were also no significant differences within the PPS subgroups in years since polio onset. However, CMP clients discharged for hyperactive non-compliance reported significantly more years since pain onset (6.3 +/- 7.4) as compared to the CMP clients who completed rehabilitation (2.6 +/- 2.4)(t=3.01; p<0.01).

 

Beck Depression Inventory Scores. The mean BDI score in the CMP group was statistically but not clinically (not >17) significantly elevated as compared to the control and PPS group means (Table 2) (Beck, et al ., 1961). The BDI scores for the CMP clients who completed rehabilitation and those who were discharged for anergic non-compliance were statistically significantly elevated as compared to the control group mean (Table 3). However, only the mean BDI score of 19 in the CMP clients discharged for anergic non-compliance was clinically elevated indicating that these clients as a group demonstrated symptoms of “mild” depression (Beck, et al., 1961).

 

There were no significant differences in BDI scores between the PPS clients as a group and the controls, within the PPS subgroups or between the controls and any PPS subgroup.

 

Type A Behavior Score. The mean Type A Behavior scale (TAB) score was significantly elevated in CMP clients as a group as compared to the controls (Table 2). The mean TAB score was also significantly elevated as compared to the controls in the CMP clients who completed rehabilitation and elevated even higher in those who were discharged for hyperactive non-compliance (Table 3). However, there were no significant differences in TAB score between the CMP clients discharged for anergic non-compliance and the controls or within the CMP subgroups. There were no significant differences in TAB scores between the PPS clients as a group and the controls, within the PPS subgroups or between the controls and any PPS subgroup.

 

Negative Reinforcement Motivation Score. The mean Negative Reinforcement Motivation scale (NEG) score was significantly elevated in the CMP clients as a group (Table 4) and in each of the CMP subgroups as compared to the controls (Table 5). However, there were no significant differences in NEG scores within the CMP subgroups. There were also no significant differences in NEG scores between the PPS clients as a group and the controls, within the PPS subgroups or between the controls and any PPS subgroup.

 

Sensitivity to Criticism and Failure. There was no significant difference in the mean Sensitivity to Criticism and Failure scale (SEN) score between the CMP clients as a group and the controls (Table 2) or between any CMP subgroup and the controls (Table 3). However, the SEN score was significantly elevated in the CMP clients discharged for hyperactive as compared to anergic non-compliance.

 

The mean SEN score was significantly elevated in the PPS clients as a group as compared to the controls (Table 2). The mean SEN score was also significantly elevated as compared to the controls in the PPS clients who completed rehabilitation and elevated even further in those who were discharged for hyperactive non-compliance (Table 3). However, there was no significant difference in SEN score between the PPS clients discharged for anergic non-compliance and the controls or within the PPS subgroups.

 

DISCUSSION

 

These findings document that discharge from a chronic pain management program results not only from anergia but also from hyperactivity, since 40% of CMP clients were discharged for hyperactive noncompliance. Further, hyperactive CMP clients did not report significantly more symptoms of depression than did those discharged for anergic non-compliance or those who completed rehabilitation. These findings contradict those of Blumer and Heilbronn (1989) but support the data of King and Snow (1989). Thus, anergia is not always demonstrated by CMP clients, nor are symptoms of depression necessary for the genesis of chronic pain.

 

The significantly elevated Type A behavior and Negative Reinforcement Motivation scores in CMP clients as a group support the description by Van Houdenhove, et al. (1987) of “pain-prone” individuals demonstrating premorbid, internally-driven hyperactivity that serves in part to protect against feelings of guilt (Van Houdenhove, et al., 1987). The lack of significant differences in Negative Reinforcement Motivation scores between CMP subgroups suggests that negative reinforcement motivation may be a trait in individuals who develop CMP and is not a factor that affects compliance with rehabilitation.

 

The significantly elevated Type A behavior score in CMP clients who completed rehabilitation suggests that an elevated level of work-oriented behavior may be helpful or even necessary to complete rehabilitation in a pain management program. This conclusion is supported by the below average Type A behavior score of 39 recorded in CMP clients who were documented to be malingering (Bruno, 1991). These clients demonstrated profound anergia and refused to participate in their own rehabilitation.

 

However, an extreme elevation in Type A score, as seen in CMP clients discharged for hyperactive noncompliance, suggests that excessive Type A behavior may be inimical to the self-care behaviors and moderation of activity that are required to manage chronic pain in clients demonstrating hyperactivity.

 

The significant elevation of the Sensitivity to Criticism and Failure score in CMP and PPS clients discharged for hyperactive non-compliance, as well as in the PPS clients who completed rehabilitation, may be interpreted in a similar fashion. A certain level of sensitivity to criticism and concern about failure may be required for clients to listen to the treatment team and make the significant life-style changes that

 

are necessary to treat both CMP and PPS. This conclusion is supported by the below average Sensitivity to Criticism and Failure score in the clients discharged for anergic non-compliance (Table 3) and by the report of an even lower score of 23 in malingering CMP clients, who appeared insensitive to input from the treatment team or the needs of and impact on others of their continuing disability (Bruno, 1991).

 

On the other hand, extreme sensitivity to criticism and a constant fear of failure would prevent hyperactive individuals from making lifestyle modifications that are readily noticed by others (such as reduced caretaking, eliminating overtime work or using a wheelchair) and that could generate negative comments by family members, friends and colleagues. Thus, the significantly elevated Sensitivity to Criticism and Failure score in the PPS group could explain their 79% rate of hyperactive non-compliance (versus 40% in the CMP group) and the near 4:1 ratio of discharge for hyperactive versus anergic non-compliance in the polio survivors. These clients’ heightened sensitivity may also explain why individuals with supportive and less critical family members were found to be more likely to complete a pain management program (King and Snow, 1989) or rehabilitation for PPS (Creange and Bruno, 1994).

 

Using the RMS in Developing a Rehabilitation Plan. These findings indicate that the Reinforcement Motivation Survey can be useful in both identifying clients with the potential for non-compliance and indicating the form non-compliance will take even before the client begins therapy. Using the RMS to identify potential non-compliers should be of great help to the vocational rehabilitation counselor and insurance nurse who are responsible for returning clients on long-term disability to work in a pressured managed care environment that demands rapid results but allows a minimum expenditure of insurance company dollars. If behaviors that will likely subvert rehabilitation are identified and managed from before the first day of treatment, the client’s potential for success in therapy and returning to work will be maximized. Clients who are unable or unwilling to modify their non-compliant behaviors – in spite of the best interdisciplinary efforts of the case manager, therapists and psychologist – could be discharged from rehabilitation with cause, compensation stopped and their cases closed.

 

For example, clients with markedly elevated Type A behavior or Sensitivity to Criticism and Failure scores (i.e., more than one standard deviation above the control group mean) would be identified as potential hyperactive non-compliers. The early identification of hyperactive non-compliers is especially important, since hyperactive behavior is often overlooked or even welcomed, since counselors are pleased when a client appears “extremely well motivated for therapy.” Hyperactive behaviors that were present premorbidly and that are related to the exacerbation or maintenance of symptoms should be discussed with the client before treatment begins. Clients should be cautioned that unless hyperactivity is decreased , their symptoms will continue, rehabilitation will be subverted and the likelihood of returning to work will be significantly decreased.

 

A rehabilitation plan should then be developed that includes clients keeping daily symptom and activity logs that are reviewed before each therapy session. The presence of hyperactivity should be immediately discussed with the client and its persistence should be addressed by requiring the that client sign a behavioral contract. This contract should make clear that continued treatment and compensation income are contingent on decreasing hyperactive behaviors and full compliance with therapy. A client’s inability to decrease hyperactive behaviors also necessitates referral to a psychologist who can help identify the motivations for Type A behaviors and modify elevated sensitivity to criticism and failure.

 

Clients having extremely low Type A behavior or Sensitivity to Criticism and Failure scores (i.e., below the control group mean) would be identified as potential anergic non-compliers. Even before therapy begins, these clients should sign a behavioral contract stating that all therapy session will be attended, daily logs completed and home exercises and ADL activities performed as prescribed or rehabilitation and

 

compensation income will be discontinued. When physical and occupational therapy begin, the contract is expanded to include an individualized home exercise program and the specific activities to be performed outside of the clinic.

 

We have found the RMS to be very helpful over the past five years in identifying potential non-compliers and guiding the creation of individualized rehabilitation plans. However, we are much more successful in slowing hyperactive clients than in activating those who are anergic. Even the RMS prompting behavioral contracting before treatment begins – contracts promising that therapy and even compensation income will be discontinued with the persistence of non-compliance – cannot motivate the profoundly anergic client to participate in his own rehabilitation. More applied research is needed to identify ways in which the anergic client can be motivated.

 

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Blumer, D. and Heilbronn, M., Chronic pain as a variant of depressive disease, J. Nerv. Ment. Dis, 170 (1982) 381-406. [PubMed Abstract]

 

Blumer, D. and Heilbronn, M., Dysthymic pain disorder: The treatment of chronic pain as a variant of depression. In: C.D. Tolloson (Ed.) Handbook of Chronic Pain Management, Williams & Wilkins, Baltimore, 1989.

 

Bruno, R.L., Predicting pain management program outcome, Arch. Phys. Med. Rehab., 10 (1990) 785.

 

Bruno, R.L. and Frick, N.M., Stress and “Type A” behavior as precipitants of post-polio sequelae. In: L.S. Halstead and D.O. Wiechers (Eds.) Research and Clinical Aspects of the Late-Effects of Poliomyelitis, March of Dimes, White Plains, 1987. [Lincolnshire Library Full Text]

 

Bruno, R.L. and Frick, N.M., Psychology of polio as prelude to post-polio sequelae: Psychotherapy and behavior modification, Orthopedics, 14 (1991) 1185-1193.[Lincolnshire Library Full Text] Cameron, K. and Gregor, F., Chronic illness and compliance, J. Advan. Nurs., 12 (1987) 671-676. [PubMed Abstract]

 

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Creange, S.J. and Bruno, R.L., Family support as a predictor of participation in rehabilitation for post-polio sequelae, N.J. Rehab., 8 (1994) 8-11.

 

Ekerling, L. and Kohrs, M.B., Research on compliance with diabetic regimens: Application to practice, Am. Dietetic Assoc., 84 (1984) 805-809.

 

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Gluck, T.P., Meilman, P.W., Skultety, F.M. and Dowd, E.T., Prediction of long-term outcome of

 

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Jette, A.M., Improving patient cooperation with arthritis treatment regimens, Arth. Rheum., 25

 

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King, S.A. and Snow, B.R., Factors for predicting premature termination from a multidisciplinary

 

inpatient chronic pain program, Pain, 39 (1989) 281-287. [PubMed Abstract]

 

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[PubMed Abstract]

 

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Powell, L.H., Friedman, M., Thoresen, C.E., et al., Can the Type A behavior pattern be altered after myocardial infarction, Psychosom. Med., 46 (1984) 293-313. [PubMed Abstract]

 

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Sackett, D.L. and Snow, J.C., The magnitude of compliance and non-compliance. In: R.B. Haynes, D.W. Taylor and D.L. Sackett (Eds.) Compliance in Health Care, Johns Hopkins University Press, Baltimore, 1979.

 

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Table 1 [below]

 

Correlations (r) between individual RMS scale items and total scale scores. (Answers scored with a “1” in parentheses; a,b: Item pairs correlated to assess internal consistency.)

 

r	Type A Behavior Scale Items.
.59	Do you consider yourself to be ‘hard driving?’ (True)
.54 Do you set at least one deadline per day for yourself? (True)
.53 Is it very important for you personally to get ahead in life? (True)
.47 Do you set at least one deadline per week for yourself? (True)
.45 Do you spend more than 8 hours per week working overtime? (True)
.41 Do you usually wake up in the morning not feeling well rested? (True)
.39 Have you taken less than one vacation per year during the past 5 years? (True)
.34 Do you spend less than 5 days on an average vacation? (True)
.29 Do you enjoy competition? (True)
.18 Do you have a temper that’s hard to control, ‘fiery?’ (True)
r Negative Reinforcement Scale Items.
.49 I don’t need much from people. (True)
.42 I would dislike very much working alone in some isolated place. (False) a
.42 I sometimes need people to prod me to work. (False)
.41 Once I begin a task I try to finish it immediately, even if there’s no deadline. (True) b
.41 When I’m sick, I prefer that my friends leave me alone. ( True)

 

.35	I feel dissatisfied if I remain unnoticed. (False)
.35	I’d rather not be by myself. (False)
.34 I do my best work when I know it will be appreciated. (False)
.32 I feel very uncomfortable when tasks I’ve started go unfinished. (True) b
.28 When I was growing up, I didn’t care to be a member of a group or crowd. (True)
.27 It bothers me that I never get all the praise I deserve for the work I do. (False)
.27 I prefer to work alone. (True) a
.26 I tend to be interested in several different activities, rather than working at one for a long time.(False)
.25 I find it impossible to relax if there’s work left to be done. (True)
.24 I’m never happier than when people say I’ve done a good job. (False)
.22 I have the habit of starting things and then losing interest in them. (False)
.21 I have very many close friends. (False)
.17 More than once, I’ve very nearly let my car run out of gas. (False)
r Sensitivity to Criticism and Failure Scale Items.
.64 What people think of my work very much affects how I feel about myself. (True) a
.60 Criticism disturbs me very much. (True)
.59 Thoughts of my past mistakes often bother me. (True) b
.58 I give little thought to my failures after they’re past. (False) b
.57 If something goes wrong in my work, it can make me feel depressed. (True)
.53 Peoples’ comments about me don’t bother me. (False)
.50 My image of myself depends greatly on success in the work that I do. (True) a
.39 I am the only person I have to please. (False)

Table 2 [below]

 

Mean (± standard deviation) BDI and RMS scale scores for the control, chronic musculoskeletal pain (CMP) and post-polio sequelae (PPS) groups.

 

CONTROLS	CMP	PPS
Sample Size	125	80	41
Beck Depression Inventory 11 (± 8) a 16 (± 9) 14 (± 9)
Type A Score 47 (± 21) 63 (± 20) 55 (± 18)
Negative Reinforcement Score 52 (± 17) 65 (± 16) 51 (± 14)
Sensitivity to Criticism and Failure Score 59 (± 27) 65 (± 28) 77 (± 22)

a: Mean Beck Depression Inventory score of a group (n=115) diagnosed as not being depressed (from Beck, et al, 1961). Mean score significantly elevated (p<0.01) as compared to the control ( ) or postpolio group ( ¥ ) mean. Editorial Note: Unable to determine from source document to which table entries the latter 2 suffixes apply

 

Tables 3 to 5 missing in source document.

 

The Lincolnshire Post-Polio Network

 

Registered Charity No. 1064177

 

An Information Service for Polio Survivors and Medical Professionals

 

All enquiries, book requests, medical article requests, membership fees, items for newsletters and donations to The Secretary, Lincolnshire Post-Polio Network PO Box 954, Lincoln, Lincolnshire, LN5 5ER United Kingdom Telephone: +44 (0)1522 888601 Facsimile: +44 (0)870 1600840 Email: info@lincolnshirepostpolio.org.uk Web Site: www.lincolnshirepostpolio.org.uk

 

The Lincolnshire Post-Polio Network takes great care in the transcription of all information that appears at this site. However, we do not accept liability for any damage resulting directly or otherwise from any errors introduced in the transcription. Neither do we accept liability for any damage resulting directly or otherwise from the information available at this site. The opinions expressed in the documents available at this site are those of the individual authors and do not necessarily constitute endorsement or approval by the Lincolnshire Post-Polio Network.

 

© Copyright The Lincolnshire Post-Polio Network

 

Copyright is retained by The Lincolnshire Post-Polio Network and/or original author(s). Permission is granted to print copies of individual articles for personal use provided they are printed in their entirety. Links from other Internet WWW sites are welcome and encouraged. We only ask that you let us know so that we can in future notify you of critical changes. Reproduction and redistribution of any articles via any media, with the exception of the aforementioned, requires permission from The Lincolnshire Post-Polio Network and where applicable, the original author(s).

 

Document preparation: Chris Salter, Original Think-tank, Cornwall, United Kingdom.

 

Document Reference: <URL:http://www.zynet.co.uk/ott/polio/lincolnshire/library/harvest/rms.html> Created: 12th February 1997

 

Last modification: 29th January 2010.

SILICON, SEX and POLIO SURVIVORS

Dr. Richard L. Bruno

Post-Polio Service

Kessler Institute for Rehabilitation 1995

Last January I got a brand new Macintosh computer that came with a modem. Ever since I’ve been “surfing” the Internet, hardly stopping for food or sleep. You’d be amazed at what I’m finding on the disABILITIES bulletin boards: Sex. Yes, unbridled, undiluted and unimpeded discussions about sex among people with all kinds of disabilities, from high-level quads to quadruple amputees. However, there is one place where I’ve heard no discussion of sex: the Post-Polio bulletin board. There are lots of questions about PPS that you had the answers to years ago: Do I have ALS; does exercise make you weak; where can I get a scooter? But, not one question or comment about sex.

I guess I shouldn’t be surprised. Many of our patients at Kessler don’t mention sex, either. Some mention that spouses do not believe that PPS symptoms are “real.” But, most often spouses are very supportive about the need for their post-polio mate to slow down and take care of themselves, even if that means a new brace, crutches or a scooter. So, if spouses are so supportive, why is there no mention of sex?

ALL’S TOO QUITE ON THE SOUTHERN FRONT

There are probably several reasons for the lack of talk about sex:

Many polio survivors grew up in the 50’s when discussing sex was the same as walking down Main Street without your pants. Also, 40 years ago, even more than today, people with disabilities were thought not to be fully human, let alone sexual beings;

Also, it was vital back in the dark ages that anything not “normal” (that is anything not seen on Ozzie and Harriette) be hidden. So, if a polio survivor expected to have a relationship with someone the disability had to be hidden. Since the polio residuals were often hard to hide, the disability was often just ignored or denied. It amazes me still how many survivors tell me that they have never, ever discussed the fact they had polio with their spouse, let alone the experience of having had polio or – God forbid – their feelings about it.

The process of hiding, denying or ignoring the reality of what’s happening in one’s body caused problems. Many people just turned off any awareness of their bodies and any feelings they have below the neck. Others have turned off ALL feelings, both below and above the neck. Since you can’t turn off pain without turning off pleasure as well, an inability to feel will make sensuality or sexuality nearly impossible – or as appealing as eating dry toast.

Also, walling off one’s feelings also cuts off the ability to be intimate with oneself and with others. And,

intimacy is the gateway to sexuality.

Having a visible disability at an early age can result in other barriers to intimacy and sexuality. There is a disturbingly high frequency of physical, emotional and sexual abuse among polio survivors. Nearly one third of the patients we treat have been physically or emotionally abused, and 25% of the women have been sexually abused. Not surprisingly, those who have been abused are much less likely to risk intimacy or be interested in sex.

Also not surprisingly, the more obvious the assistive device people used following polio the more likely it was that [they] had been abused. No wonder polio survivors discarded their braces and crutches and don’t want them back – ever! Now, 40 years later when PPS symptoms start and braces, crutches and wheelchairs are appearing again, the painful memories of the past and the reality of disability can no longer be hidden. Old fears of unacceptability and new fears of rejection surface and cut self-esteem off at the pass. And, the old viscious Rules of Society also come screaming back:

Rule #1: If you’re disabled, you’re not attractive;

Rule #2: If you’re not a attractive you can’t be sexual;

Rule #3: If you can’t be sexual, you shouldn’t have sexual feelings;

Rule #4: Wear flannel pajamas and sleep on the couch.

“IF I THINK I’M SEXY AND I LIKE MY BODY…”

Well, sexy is a sexy thinks. One of the disABILITIES bulletin boards is actually called “Sex is 99% Mental.” Sure you may not look like Cindy Crawford or Mel Gibson. But, how many non-disabled people do? What counts is how you feel about yourself, not how you look to others. If you’re not acceptable to yourself, you wont be sexually available to or even intimate with others.

The first step to intimacy and sexuality is recognizing and dealing with the emotional reality of the original polio and any abuse you have experienced because if it. Next, you need to identify your own negative feelings about yourself and stop projecting them in to the heads of potential friends and lovers. Since a whopping 72% of polio survivors are married, it’s your spouse’s head that you’re filling with your own negative thoughts about yourself and fears of rejection.

Finally, if you turned off your body to stop feeling physical pain, you need the experience of good physical feelings. You need to decrease your PPS fatigue, muscle weakness, and pain by decreasing physical and emotional stress. Then, you need to start sending pleasant physical sensation to your brain. Try long hot baths, a whirlpool or best of all a massage. When your make nice to your body and good feelings start traveling to your head, other good physical sensations (like the erotic ones) will follow that “stairway (or ramp) to heaven.”

For those who are single, get a computer, a modem and start “surfing the net.” It is actually possible to meet hundreds of people without leaving you living room. Whether you decide to let them into your life (or your bedroom), the safety of the computer gives you the freedom to be yourself and even practice being intimate with others, without worrying that everyone is looking ONLY at your brace.

When all is said and done, here’s the Golden Rule for being an intimate and sexy polio survivor (with apologies to Nike):

Turn off your thoughts, turn on your body and JUST DO IT!

The Lincolnshire Post-Polio Network

Registered Charity No. 1064177

An Information Service for Polio Survivors and Medical Professionals

All enquiries, book requests, medical article requests, membership fees, items for newsletters and donations to

The Secretary, Lincolnshire Post-Polio Network

PO Box 954, Lincoln, Lincolnshire, LN5 5ER United Kingdom

Telephone: +44 (0)1522 888601

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Email: info@lincolnshirepostpolio.org.uk

Web Site: www.lincolnshirepostpolio.org.uk

The Lincolnshire Post-Polio Network takes great care in the transcription of all information that appears at this site. However, we do not accept liability for any damage resulting directly or otherwise from any errors introduced in the transcription. Neither do we accept liability for any damage resulting directly or otherwise from the information available at this site. The opinions expressed in the documents available at this site are those of the individual authors and do not necessarily constitute endorsement or approval by the Lincolnshire Post-Polio Network.

© The Lincolnshire Post-Polio Network 1998 – 2010.

Copyright is retained by The Lincolnshire Post-Polio Network and/or original author(s). Permission is granted to print copies of individual articles for personal use provided they are printed in their entirety. Links from other Internet WWW sites are welcome and encouraged. We only ask that you let us know so that we can in future notify you of critical changes. Reproduction and redistribution of any articles via any media, with the exception of the aforementioned, requires permission from The Lincolnshire Post-Polio Network and where applicable, the original author(s).

Document preparation: Chris Salter, Original Think-tank, Cornwall, United Kingdom.

Created: 14th November 1998

Last modification: 22nd January 2010.

POST-POLIO SEQUELAE AND THE PARADIGMS OF THE 50’s:

Newtie, Ozzie and Harriet versus Paradigms of Caring and a Future for Rehabilitation in America.

Richard L. Bruno, Ph.D.

The 45th annual John Stanley Coulter Memorial Lecture presented to the American Congress of Rehabilitation Medicine, Alexandria, Virginia, June 24, 1995

Archives of Physical Medicine and Rehabilitation, 76 (12): 1093-1096.

Lincolnshire Post-Polio Library copy by arrangement with the Harvest Center Library

Post-Polio Rehabilitation and Research Service

Kessler Institute for Rehabilitation

Saddle Brook, New Jersey

and

Department of Physical Medicine and Rehabilitation

New Jersey Medical School/UMDNJ

Newark, New Jersey

Please address correspondence to: Dr. Richard L. Bruno, Post-Polio Rehabilitation and Research Service, Kessler Institute for Rehabilitation, Saddle Brook, New Jersey 07663.

POST-POLIO SEQUELAE AND THE PARADIGMS OF THE 50’s: Newtie, Ozzie and Harriet versus Paradigms of Caring and a Future for Rehabilitation in America.

Richard L. Bruno, Ph.D.

We find ourselves at an extremely interesting and extremely extreme point in our nation’s history. The pendulum of what American’s believe government should do has swung all the way from FDR’s New Deal, gaining momentum as it flew past LBJ’s Great Society to hit Bill Clinton squarely between the eyes. In listening to the political rhetoric since last year’s Republican coup, I believe that not only have the times changed but also that time itself has changed. I have the feeling it is not June 24, 1995. It feels to me as if the clock has been turned back exactly forty years. So, put on your poodle skirts, slick back your D.A. and let’s return to those thrilling days of yesteryear so we can view the childhood and adolescence of rehabilitation through the eyes of those who have grown up with it: the survivors of America’s polio epidemics. Let’s see what lessons have been learned, now that both the polio poster children and rehabilitation have reached mid-life, and ask this most important question: Given the current ideological timewarp, will polio survivors – will rehabilitation itself – have any future at all, let alone enjoy their golden years?

FRIDAY, JUNE 24, 1955.

So it’s Friday, June 24, 1955, and everyone likes Ike in these 48 United States. To date, only a California politician named Douglas and the victims of Joe McCarthy hate our Vice-President. Bob Dole is a practicing lawyer in Russell, Kansas ten years after his spinal cord was damaged during a mortar attack in Italy. Little Newtie Gingrich turned twelve just last Friday. I see him praying fervently in his sixth grade classroom that God make Congress understand that U.S. troops should not be keeping the peace in Korea.

In 1955, polio has been at the forefront of our nation’s consciousness for more than twenty years. Rehabilitation professionals are intimate with the literature on polio, its symptoms, pathophysiology and treatment. Two years ago, they read in J.A.M.A. that at least 39 percent of those having had non-paralytic polio showed measurable weakness in at least one muscle group, and 43 percent reported “increased fatiguability,” as much as six years after their acute polio [1,2]

These findings were not surprising. As early as 1940, David Bodian concluded that at least 60 percent of motor neurons had to be killed by the poliovirus for there to be any symptoms of weakness. But, even more important, Bodian found that poliomyelitis was an afterthought of the poliovirus. He concluded that an encephalitis exists whenever the poliovirus enters the CNS “whether symptoms (of paralysis) are present or not.” [3] This polioencephalitis was found to consistently and often severely damage specific brain regions: the reticular formation, hypothalamus – even the basal ganglia. [4] This damage was invoked by Bodian and others to explain the “fatiguability and fleeting attention” that were seen to persist for months after the acute poliovirus infection. [5]

Unfortunately, these important facts about polio, along with many others, are about to be erased from the consciousness of rehabilitation professionals. Why?

Because it’s 1955 and we believe in The Paradigm of Cure. Americans believe we have ‘cured’ polio by finding an effective preventative. Seven million Americans have thus far been inoculated with the new Salk vaccine. Last week, only 266 cases of polio were reported, the lowest weekly total since 1951. 43,000 cases of polio will be reported this year, down from the record high of 80,000 in 1952. Still, it will take until 1960 for the annual number of polio cases to dip below 10,000.

It’s 1955, and we act according to The Us versus Them Paradigm. Today the House of Representatives unanimously passed a resolution condemning “colonialism and Soviet imperialism.” The man on the street will angrily tell you that Americans are superior to ‘those Godless Commies’ and that it is better to be ‘dead than red.’

And, the ubiquitous symbol of ‘them,’ the adorably pitiful poster children of the National Foundation for Infantile Paralysis, have done their job well. Clad in heavy metal braces, leaning tenuously on their crutches, they called down from their posters to America’s mothers and fathers, saying: “Give money to find the polio vaccine. Don’t let your child become crippled, like me!” But, it’s 1955 and the vaccine has been found. The poster children are needed no more.

In 1955 rehabilitation is provided according to The Institutional Paradigm. To house and treat the thousands who contract polio each year, special hospitals have been built. Children are ripped away from their families and admitted for months, sometimes years. Huge wards provide assembly-line care as scores of scores of polio survivors are fed, bathed and treated. Parental visits, which always disrupt the hospital routine, are allowed rarely, briefly or not at all. Patients are slapped or beaten with rubber truncheons by therapists to ‘motivate’ them to stand up and walk. Patient’s tears or an angry word – triggered by pain, fright, homesickness, or even a nightmare – not infrequently result in the application of a straight jacket or being locked in a dark closet for the night.

It’s 1955, and we also practice The Paradigm of Shame and Shunning. Much is shameful in 1955 and many are shunned. Young, pregnant women are regularly sent away to homes for wayward girls or to back alleys. A ‘Gentleman’s Agreement’ is still in effect, and many Americans remain in the closet while others are allowed to ride only in the back of the bus.

So it is not surprising that merely having had polio, let alone not recovering completely from paralysis, are cause for both shame and shunning. Polio survivors and their entire families are often shunned for having been tainted by the ‘dreaded disease.’ Braces and crutches are certainly cause for shunning, repulsive reminders of our own physical vulnerability and of the medical profession’s shame at its failure to actually cure polio.

Finally, and most distressing, in 1955 we believe in The Paradigm of Normalcy. Tonight, at 8:00 on A.B.C, a cardigan-clad Ozzie Nelson will sit in his (and our) living room while wife Harriet waxes the kitchen floor wearing high-heels and pearls. Sons Rickie and David will come running in from a sock hop. Needless to say, no character on “The Adventures of Ozzie and Harriet” will be seen to have had polio or to have any other disability.

Thus polio survivors are taught that if they are to be accepted back into society, they must become ‘normal’ again. They must work hard and then harder in physical therapy to rid themselves of the wooden and steel stigmata of the terror that is polio. If they are to function in a totally inaccessible world, even paraplegic polio survivors must be able to walk.

So, polio survivors do work hard, harder than anyone ever has. They discard their braces and crutches. Then they go even further. They go to college, when other Americans only finish high school. They marry and have children. They work more hours of overtime and take fewer sick days than non-disabled workers. [6] They are hard-driving, overachieving perfectionists who become the leaders of their communities, their professions, the chief executives of the largest corporations. [7,8] Normal? Polio survivors transcend mere normalcy to become America’s best and brightest as our country’s clock runs forward.

THE CLOCK RUNS FORWARD . . .

During the next decades America – along with its 1.63 million polio survivors – happily forget about polio as we experience wonderful advances in rehabilitation and violent changes in our society:

The domino theory is displaced by detent and followed by dissolution of the Soviet empire; Wooden legs become polypropylene prostheses;

Our leaders and our innocence are assassinated again, and again, and again;

Wheelchairs once wicker and wood become carbon composite;

The War Against Poverty is overshadowed by the Cold War become hot in Vietnam; Paternalistic institutions become independent living centers;

Richard Nixon, Vice-President, becomes President, unindicted co-conspirator, pariah and finally, inexplicably, elder statesman;

Charity appeals for ‘those poor, pitiful cripples’ are finally made unacceptable by the demands of people with disabilities for their civil rights;

Multidisciplinary, becomes interdisciplinary becomes managed care;

The Voting Rights Act is followed by Section 504 and finally by the A.D.A.

. . . AND THEN THE CLOCK RUNS BACKWARD

But, in 1980 America’s clock stopped moving forward and began to actually run backward. An old rhetorical cold warrior became President by asking us to remember how happy we were in 1955 watching – and he believed living – “The Adventures of Ozzie and Harriet.”

But, for America’s polio survivors, the clock had already been running backward. They were being reminded of a 1955 that was not happy. Forty years after polio, their bodies were beginning to break down as a direct result of the paradigms of the 50’s. Society’s Paradigm of Normalcy, applied so successfully by polio survivors, was now extracting its price in disabling fatigue, muscle weakness and pain. [9] Polio survivors were losing the very abilities that allowed them to appear normal, that prevented shame and shunning, that freed them from institutions and allowed them to pass for normal, to become one of ‘us.’

But today, in 1995, the plight of polio survivors is of no interest to America. Why? Because it’s 1955 again. Polio has been conquered and the poster children are gone. “Forget about polio,” says our society. The National Foundation for Infantile Paralysis, now the March of Dimes Birth Defects Foundation, was asked to fund research on Post-Polio Sequelae ( PPS). “No,” said the March of Dimes, “Polio is gone. We’re curing birth defects now. If we help polio survivors, our donors will become confused. Why don’t you ask Congress for help with this orphan disease?”

So, every year since 1985 Congress has been asked to set aside funds for research on PPS, just one dollar for each polio survivor. And every year Congress says, “No. There will be no set aside. The few remaining polio survivors will be dead soon anyway. Why don’t you study an important disease or ask a private foundation for research funding?”

Of course, the ‘few remaining polio survivors’ conservatively number more than one and a half million. Polio is still the second most frequent cause of paralysis, after stroke. [10] And, polio survivors are hardly moribund; our typical patient is a working mother of 48. Polio survivors are still America’s best and brightest, both the foundation and the leaders of our society. But these facts are of no importance. The clock has been turned back and the paradigms of the 50’s have returned:

In 1995, The Paradigm of Normalcy has returned. Conservative Christian, two-parent families are normal. Anything else, to quote House Speaker Gingrich, is “corrupt and bizarre.”

The senior Senator from Kansas is running for President, again. Why? Because of his vision to lead our country forward into the new millennium? No. And not even because he wants to lead America back to the glorious 50’s. According to Senator Dole’s niece, Nancy Poche, “He still has this one

thing he needs to do. He’s still proving that he’s not handicapped.” [11] Bob Dole is clearly following the Paradigm of Normalcy: Crippled is unacceptable, normal is necessary and only achievements above and beyond normal can make ‘the handicapped’ acceptable to society. As we have seen once before in this century, only being elected President of the United States can convince a disabled man that he is normal again. [12]

In 1995, The Paradigm of Shame has also returned. Americans should be shamed into changing their circumstances, or at least their behavior. The homeless are prostitutes, alcoholics and drug addicts who should be ashamed of their lives and ‘pull themselves up by their boot straps.’ Irresponsible single women should be shamed into abstaining from sex so as not to become pregnant out of wedlock and end up on the dole.

But if shame doesn’t change behavior The Institutional Paradigm should again be applied. The Poor House should be rebuilt; children should be removed from their shameful single mothers and raised in orphanages.

The Institutional Paradigm can also be used as an adjunct to the 1950’s tried and true Paradigm of Cure. Those having a disease whose effects leave them unable to contribute meaningfully to the economy should not be allowed to place a drain on the free market. All forms of “compassionate excess,” to use the House Speaker’s phrase, should be eliminated : i.e., Medicaid, Medicare, SSI, SSDI, and especially funds for rehabilitation. Even today, Medicare will only cover outpatient rehabilitation if an individual is ‘falling or unsafe,’ the maxim being don’t let them die, but don’t help them regain function, either. This current policy is tragic for those whose PPS have forced them to go out on disability but who want to regain function and return to work.

But, you know, it would be much less expensive to forgo rehabilitation completely and simply institutionalize all of those too disabled to work. This will be an about-face from current policy, where the only people who shouldn’t be institutionalized are the homeless and the recently reinstitutionalized mentally ill. But, such a policy reversal could be a deficit busting bonanza if we heed the advice of New York’s Governor and require that residents of homeless shelters pay rent. Imagine the tremendous cost savings to society if the government stops paying for rehabilitation and actually makes money by collecting rent from those it institutionalizes.

Finally, in 1995, The Us versus Them Paradigm has returned. In a remarkable echo from the 1950’s, House majority leader Dick Armey published a letter last May black-balling left-leaning charities. Principle among these communist organizations was the American Cancer Society, tarred as an enemy of the free-market because it opposes the sale of cigarettes.

Representative Armey and his troops have also stated that everyone who is not ‘us’ – that is white, working, born-again, non-disabled males – is not a ‘true’ American and should be regulated – that is shamed, cured or institutionalized – into normalcy. However, all regulation of ‘us’ – that is white, business-owning, non-disabled males – should be removed. Clean air and water statutes, safe food regulations, and especially OSHA (including its new repetitive motion disorder guidelines) should be eliminated because they constrain the operation of the free market. Can repeal of workers’ compensation, child labor laws and the spendthrift A.D.A. be far behind?

But think about it. The elimination of regulation should be a boon to the medical industry in general and rehabilitation in particular. Just think of how much carpal tunnel syndrome we will be treating. However, the people most affected by eliminating regulation will be ‘them:’ workers with no clout, no voice, no cash to pay for a $500-a-plate campaign fund raiser for Congressman Armey. Their

medical insurance will have been lost along with their jobs and government funding will no longer be available to pay for rehabilitation. There will be nothing left for ‘them’ to do but beg for spare change to pay rent at the shelter.

SATURDAY JUNE 24, 1995

It is vital that each one of us remembers it is not 1955. No matter how loudly the strident and self-assured voices across the Potomac proclaim that they are restoring the old world order, the clock has not been turned back that far . . . at least not yet. It is still 1995, where we find ourselves at an extremely dangerous point in the life of our nation. The pendulum of what Americans believe government should do and our nation should be is swinging back to a simpler and more simplistic time. Will polio survivors and rehabilitation have any future, let alone their golden years? It is up to us, as individuals, rehabilitation practitioners, and members of this Congress, to insure the future by not allowing the pendulum to swing back and by preventing America from reverting to the paradigms of the 50’s.

We must prevent a return to The Paradigm of Normalcy and instead embrace Paradigms of Quality. Rehabilitation is the one specialty where normalcy – that is the absence of disease or its symptoms – is not the goal. Rehabilitation’s focus on function, on nothing less than quality of life is uniquely ours as a specialty. But, promoting quality is not easy. Recommending that our post-polio patients use new ‘abnormal-looking’ assistive devices is emotionally painful, both for our patients and for us on the treatment team. However, it is only this departure from 40 years of ‘normalcy’ that allows our patients to regain function and maintain their quality of life.

Further, promoting Paradigms of Quality will have effects far beyond our clinics. Our philosophy of quality of life places us in the eye of the vitriolic hurricane of debate about life itself. Should an elevated a – fetoprotein be an automatic criterion for abortion because no child with spina bifida could possibly have quality of life? Should a C2 quad, like Christopher Reeve, or woman in Wisconsin with CP or the paraplegic director of a post-polio service – be allowed or even assisted to die because having any disability is, as one insurance company describes it, “a living death?” [13]

Our unique experience and philosophy can help this society make reasoned decisions about whether life should end when its quality is gone. In the process, we will begin to eliminate society’s notion of disability as “a living death.” [14,15]

Further, if we reject The Paradigm of Normalcy we will also be eliminating The Paradigm of Shame. It must no longer be shameful in America to have a disability. We must end society’s view of people with disabilities as ‘them.’ We must act together to finally end Jerry Lewis’ demeaning Labor Day spectacle. We must ask well-meaning A.C.R.M. members to stop injury prevention programs that send former SCI and TBI patients to high schools and Rotary Clubs as a warning to careless drivers and careless divers. The message of these programs is the same as that of the polio poster children forty years ago: “Don’t become crippled, like me. Don’t become one of the living dead.”

We must also continue to fight The Institutional Paradigm as we have for more than a generation. We must rededicate ourselves to self-advocacy, self-determination and independent living – to Roberts Rules if you will – in memory of polio survivor and vocational rehabilitation pioneer Ed Roberts.

Finally, we must reject The Paradigm of Cure and replace it with Paradigms of Care and, even more, with Paradigms of Caring. We rehabilitation professionals must be the voice of caring in our society, demanding that Congress set priorities for policy beyond merely cutting the budget deficit.

We must state clearly that assuring medical care for all Americans is not the redistribution of wealth, but the redistribution of health; that managed care is not desirable merely because it manages to cut costs. We must demand that the emphasis always be on care that is also carefully managed. We must state unequivocally that medical care is an American’s first right, the right that makes possible not only life, but also liberty and the pursuit of happiness.

In 1995, at this extreme point in the life of our nation, we have three choices: We can react, revert and return to “The Adventures of Ozzie and Harriet;” we can remain in the present, recline and retire with “Rosanne” and “ER;” or, we can can reject ‘us versus them,’ normalcy, shame, inhuman institutions and simplistic cures. We can remember our past, remake our present and restore the possibility of a future – and even golden years – for polio survivors and for rehabilitation in America.

REFERENCES

1. Mascots E, Kaplan LI. Follow-up studies in seventy-five cases of nonparalytic poliomyelitis. Journal of the American Medical Association 1953; 152:1505-1506.
2. Shaw EB, Levin M. The infrequent incidence of nonparalytic poliomyelitis. Journal of Pediatrics 1954; 44: 237-243.
3. Howe, HA, Bodian D. Neural Mechanisms of Poliomyelitis. New York: The Commonwealth Fund, 1942.
4. Bruno RL, Frick NM, Cohen, J. Polioencephalitis, stress and the etiology of Post-Polio Sequelae. Orthopedics 1991; 14 (11): 1269-1276. [Lincolnshire Library Full Text]
5. Bruno RL, Sapolsky R, Zimmerman JR, Frick NM. The pathophysiology of a central cause of post polio fatigue. Annals of the New York Academy of Sciences 1995; 753: 257 – 275. [Lincolnshire Library Full Text]
6. Lonnberg, F. Late onset polio sequelae in Denmark. Scand. J. Rehab. Med. 1993; Suppl. 28: 1-32. [PubMed Abstract]
7. Bruno RL, Frick NM. Stress and “Type A” behavior as precipitants of Post-Polio Sequelae. In LS Halstead and DO Wiechers (Eds.): Research and Clinical Aspects of the Late Effects of Poliomyelitis. White Plains: March of Dimes Research Foundation, 1987. [Lincolnshire Library Full Text]
8. Bruno RL, Frick NM. The psychology of polio as prelude to Post-Polio Sequelae: Behavior modification and psychotherapy. Orthopedics 1991; 14 (11): 1185-1193. [Lincolnshire Library Full Text]
9. Frick NM, Bruno RL. Post-Polio Sequelae: Physiological and psychological overview. Rehabilitation Literature 1986; 47 (5-6): 106-111. [Lincolnshire Library Full Text] 10. Parsons PE. Data on polio survivors from the National Health Interview Survey. Washington, D.C.: National Center for Health Statistics, 1989.
10. Roberts SV. A warhorse’s toughest fight. U.S. News and World Report 1995; 118: 40-45. 12. Gallagher HG. FDR’s Splendid Deception. Arlington: Vandamere Press, 1994. 13. Gallagher HG. By trust betrayed: Patients, physicians and the license to kill in the Third Reich. New York: Henry Holt and Company, 1990
11. Singer, P. Rethinking life and death. New York: St. Martin’s Press, 1995.
12. Hendin, H. Suicide in America. New York: W.W. Norton, 1995.

The Lincolnshire Post-Polio Network

Registered Charity No. 1064177

An Information Service for Polio Survivors and Medical Professionals

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Document preparation: Chris Salter, Original Think-tank, Cornwall, United Kingdom.

Document Reference: <URL:http://www.zynet.co.uk/ott/polio/lincolnshire/library/harvest/coulter.html> Created: 16th January 1997

Last modification: 29th January 2010.