Post-polio syndrome: issues and strategies for rehabilitation counselors. (Post-Polio Syndrome).

Vocational planning with persons who have chronic health conditions is a complex process and creates many unique challenges for rehabilitation professionals. Finding and maintaining employment is often a considerable task for people experiencing unpredictable symptoms and progressive limitations.. A counselor's knowledge and understanding of the individual's chronic illness is critical to promoting successful vocational assessment and placement.

Many counselors may lack information about Post-Polio Syndrome due to limited rehabilitation information about the disorder (e.g., see Eisenberg, Glueckauf, & Zaretsky, 1999; Falvo, 1991; Livneh & Antonak, 1997). Following the successful vaccines developed in the 1950s to immunize individuals from polio, it has been regarded by most people as a disease of the past (Halstead, 1998; Perry, Barnes, & Gronley, 1988). In addition, many persons who were originally diagnosed with polio prior to that decade believed that their major challenges with the illness were behind them. Unfortunately, many of these individuals are facing secondary disabilities stemming from their earlier polio ordeal and are now experiencing a reoccurrence of old symptoms as well as the development of new problems and functional limitations. It has been estimated that nearly one-half of the 1.63 million Americans who were diagnosed with polio are now reporting new and unexpected problems (Bruno & Frick, 1991; Halstead, 1998). Despite the growing numbers of persons being affected, little literature for rehabilitation is currently available. Consequently, the purpose of this articles is to review the medical, psychosocial, and vocational aspects of post-polio syndrome. In addition, recommendations are offered for rehabilitation practice and research concerning vocational planning and counseling.

Medical Aspects

Although polio has been a known disorder for hundreds of years, the first epidemic was reported in Europe and North America in the mid to late 1800s (Jubelt & Drucker, 1999). Subsequent epidemics occurred which caused disability and death for thousands of people (Halstead, 1998). From their literature review, Jubelt and Drucker report that the poliovirus infection is characterized by flu-like symptoms which include nausea, cramps, pain, fever, and headache. More significant symptoms appear 1-3 days after these minor symptoms, including paralytic polio and meningitis. The poliovirus infects the spinal cord anterior horn cells and other motor neuron cells. Within a few weeks, recovery of either partial or full abilities typically occurs.

During the 1980s, persons who had survived polio began to note new symptoms and unexpected problems related to fatigue and muscle weakness. These symptoms have been identified as post-polio syndrome. Although the reporting of such problems was not new, it took both the medical profession and those with the disease by surprise (Bruno & Frick, 1991; Jubelt & Drucker, 1999). While it is not clear what exactly causes post-polio problems, physicians believe that it is not a reactivation of the original virus. Rather as Frick and Bruno (1986) report, there are several hypotheses regarding the cause of the new symptoms. One hypothesis is that the reduction of the number of anterior horn cells at the initial onset of the poliovirus is a factor. Subsequently, the normal aging process further reduces the remaining anterior horn cells so that those remaining are no longer able to overcome the deficits created originally by the virus. This reduction of anterior horn cells has resulted in decreased functioning across several areas including stamina and strength. A second explanation centers on the idea that overuse and fatigue of originally weakened muscles has contributed to the current difficulties. With the uncertainty surrounding the cause and relative lack of knowledge about this disorder, persons who have post-polio syndrome may experience frustration and fear as they begin to address their symptoms.

Diagnosis

Researchers and physicians developed the criteria for diagnosing the disorder. These criteria include a) a previous episode of paralytic polio, b) a period of time when the individual has experienced a recovery and years of stability, c) new onset of muscle weakness and fatigue, and d) a ruling out of other medical conditions (Jubelt & Drucker, 1999). According to Bruno, Sapolsky, Zimmerman, & Frick (1995), one of the most common symptoms is new or increased fatigue. Muscle weakness is also a commonly reported early problem (Halstead, 1998).

There is no definitive test to identify post-polio syndrome, therefore the diagnostic process can be long and stressful. Other illnesses that could contribute to the symptoms typically need to be eliminated before a diagnosis can be made (Halstead, 1998; Trojan & Finch, 1997). Because of early problems recognizing post-polio syndrome, individuals often experienced a period of uncertainty about what was happening to them. Was this a new occurrence of polio? Were all of the original limitations going to return?

Course/Treatment

A specific course for the disease is not known. As Halstead (1991) notes, although symptoms are generally common across individuals, they tend to be fairly non-specific. For example, fatigue is a common symptom of post-polio but it is also typical of many other illnesses and disorders. In addition, persons without any health problems report feeling fatigued. This lack of specificity has helped to create some question by physicians about the validity of the illness. Consequently, some persons report that they were not initially believed by physicians or that their symptoms were misdiagnosed which has created further problems in their ability to cope with the disorder. Rehabilitation counselors can assist individuals during this diagnostic period by becoming educated themselves about post-polio syndrome, helping to educate the client, and by being supportive and acting as an advocate for the individual within the medical realm.

In order to discover more about the syndrome, current literature has examined predictive factors and clinical manifestations. Trojan, Cashman, Shapiro, Tansey and Esdaile (1994) examined factors that would predict which individuals would most likely develop post-polio syndrome. Their results suggest that those who were more likely to exhibit new problems generally had greater weakness during their original bout with polio. They found, also, that the odds ratio for developing post-polio syndrome increased 1.6 for each decade since acute onset. It appears that length of time following the poliovirus infection was more critical than the age of the participant at initial onset. Frick and Bruno (1986) concurred that new symptoms have little to do with chronological age as most persons appear to report having symptoms approximately 30 years post onset. In addition, Bruno and Frick (1991) stress the importance of understanding the personality type of the individual. They suggest that more difficulties may arise for individuals attempting to adjust to new symptoms if they also have more compulsive, Type A behaviors. Consequently, Maynard (1995) discusses the importance of physicians using a life-course model when evaluating the condition and its impact on the individual. This model emphasizes looking at how the person adjusted to their prior polio as well as the attributions they formulate for their current situation. Grzesiak (1979) describes a similar process for rehabilitation psychologists working in health care setting.

Trojan and Finch (1997) stress the importance of individuals learning to manage their new symptoms. Recognizing that problems related to post-polio syndrome have been unexpected by most individuals, these researchers note that treatment depends on identifying specific symptoms (e.g., pain, fatigue, etc.) and developing strategies to reduce their impact on daily functioning. For example, Trojan and Finch suggest that persons may utilize assistive devices to conserve energy and to reduce joint pain. Unfortunately, due to the reluctance of many persons with new symptoms to rely on assistive devices, they frequently refuse to use the equipment (Peach & Olejnik, 1991; Trojan & Finch, 1997). Understanding both the psychological and physical issues related to post-polio syndrome and disability response are critical considerations for rehabilitation counselors. Lifestyle modification such as using energy-saving equipment or planned rest periods has been reported in much of the literature as being the most beneficial strategy in treating the disorder (Bruno & Frick, 1991; Perry, Barnes, & Gronley, 1988; Westbrook, 1995). Therefore, counselors need to understand the usefulness of lifestyle changes that may promote further wellness as well as be able to identify accommodations appropriate for reducing specific symptomology.

Functional Limitations

The problems related to post-polio are numerous and individuals may experience varying functional difficulties. Limitations frequently include progressive muscle weakness, pain, and fatigue. Persons report a loss of functioning and describe incidences such as the necessity of wheelchair use or the inability to continue using crutches comfortably (Halstead, 1998; Jubelt & Drucker, 1999). Persons often experience significant fatigue. Halstead (1991) notes that this fatigue is characterized by a marked difference in energy level, stamina and occasionally mental attentiveness. It generally occurs at specific points during the day (e.g., late afternoon) as opposed to fatigue that exists all day. Halstead also reports that problems may arise when walking, climbing stairs or performing daily living activities. In addition, persons may experience sleeping problems, breathing difficulties and increased sensitivity to cold temperatures (Jubelt & Drucker, 1999; Young, 1991).

Westbrook (1995) describes a five year follow-up study that examined physical and functional abilities and current health stares of 176 participants with post-polio syndrome. The results indicated that over a five year period, most individuals reported increases in muscle pain and weakness, joint pain, and changes in walking. Perhaps most importantly, they reported more problems in four of the eight daily living activities (i.e., meeting the demands of work or home, climbing stairs, walking on level surfaces, and getting in and out of bed) in which they were engaged. The majority of participants (87%) reported problems in meeting the needs of their jobs as well as completing household tasks. Surprisingly, their emotional distress level actually decreased over that time. Westbrook hypothesizes that over time, both the medical treatment and lifestyle modifications the participants experienced had helped them in the coping process.

Psychosocial Factors

Many individuals with post-polio syndrome experience emotional difficulties. Due to the instability of the disorder, individuals live with a sense of uncertainty about their future. According to Matson and Brooks (1977), illness alters self-perceptions as it forces individuals to deal with changing and shifting abilities. Also, a great number of persons were originally diagnosed with polio in childhood. Consequently, the newly diagnosed adults have already developed their own identities, social relationships and careers. When compared to both the general non-disabled population and those with disabilities, Bruno and Frick (1991) note that polio survivors were generally better educated and more likely to be married. In addition, when compared to their disabled counterparts, persons who have had polio are more likely to report a higher level of employment. Consequently, these new problems may force them to make adjustments to long-held views concerning self-image and self-esteem as they respond to disability again.

The earlier occurrence of polio may also influence the current adjustment process. Attributions influence the way persons react to their illness, and Maynard (1995) notes that attributions about the reason symptoms have begun again (age-related or unique to polio) are critical in determining a person's response to disability. He suggests that those who attribute their problems to age-related causes are better able to cope because they are able to view the problem as either a normal progression and / or gain some control over it. In contrast, when persons attribute all of the problems to being unique to polio, they appear to cope less well.

From a different perspective, Bruno and Frick (1991) suggest earlier polio survivors typically worked to minimize their disability while trying to blend into general society. This was largely due to the time period and public fears concerning the polio outbreak. During that time, perhaps President Franklin Roosevelt was the best example of this effort to appear "normal." Few photographs exist that show him using a wheelchair following his onset of polio. The recent controversy surrounding his memorial (whether to depict him using a wheelchair) highlights the difficulties many have in addressing his disability. Consequently, persons with post-polio symptoms may bring with them a similar legacy of discomfort with the disability community. Maynard and Roller (1991) describe a model in which they identify three types of common post-polio coping behaviors; passing, minimizing, and identifying. Maynard and Roller suggest that those persons who either hid or attempted to minimize their early experience of polio might be at more risk psychologically when confronted with additional symptoms later in life. According to these researchers, some individuals may feel threatened emotionally because they can no longer hide disability. This may impact long-held beliefs about themselves. For those individuals who have minimized the impact of polio, they may actually not seek assistance (e.g., medical, technological, etc.) from which they could benefit when new symptoms occur. Thus, recognizing how a persons with post-polio adapted to their original disability is critical. Post-polio syndrome brings with it both the reoccurrence of old problems and the development of new ones. Counselors should not anticipate that because an individual has lived with polio for years that they have actually moved through the current grief process and adjusted to their disability of today.

Vocational Issues

The physical and emotional aspects of post-polio syndrome may have substantial impact on an individual's employment. Most persons with post-polio syndrome have established their career but may face needing an occupational change late in their life. Others may be forced to retire earlier than desired. In a two phase study, Westbrook (1995) found in phase 1 that 31 of the participants had retired early due to medical problems with 83 participants continuing to work. At the 5 year follow-up, 23% of the employed group had now retired early. In addition, 23% had stopped working, 13% had changed to part-time work, 8% had changed to less strenuous jobs, and 10% had made adjustments in their employment.

The inability to predict the precise course of a disorder often hinders the rehabilitation process. As with other chronic health conditions such as multiple sclerosis, individuals may leave employment when early job accommodations could enhance job potential (Kornblith, LaRocca, & Baum, 1986). Clients may possess limited knowledge of the implications of the Americans with Disability Act (ADA) and how it can be used to assist them (Feldblum, 1991). Counselors may need to educate clients about the ADA and their rights to a wide range of accommodations. When assisting clients in selecting appropriate accommodations, both the counselor and the client need to take into account the progressive nature of the disorder, the possible progressive functional limitations, and recognize the negative consequence of muscle overuse. Self-assessment is an important first step in identifying needed accommodations in the workplace and counselors can assist in that process (Roessler & Rumrill, 1995). Once the client is able to identify areas at work that create difficulties, the counselor can aid the client in identifying ways that these problems can be reduced through the use of technology and assistive equipment. As most individuals with post-polio are employed, accommodations should be considered early and put in place before significant work problems occur.

Job accommodations should be coupled with overall lifestyle awareness. Young (1991) suggests that work simplification, adaptive equipment, and energy conservation may assist the individual in maintaining better health. Energy conservation can be as simple as self-pacing with appropriate rest periods to making lifestyle and work modifications to reduce the demands being placed on symptomatic muscles (Perry, Barnes, & Gronley, 1988). Cognitive deficits may also need to be identified. Bruno, Galski, and DeLuca (1993) found that fatigue hindered attention and the information processing speed of persons with post-polio but did not limit their ability to learn or perform more complex cognitive tasks. Consequently, tasks requiring rapid information processing may prove difficult. Therefore, they suggest a combination of job modifications with the reduction of physical and emotional stress and adequate rest. Although discussion about reasonable accommodations typically refer to rest periods or flex-time, the counselor working with persons with post-polio may need to be even more creative. For example, rather than focusing on overall rest, it is important to know which muscles are at risk of overuse. Specific types of rest or alleviation of specific duties may be of more importance in enhancing work capacity (Jubelt & Drucker, 1999).

Implications for Counselors and Rehabilitation Services

There are a number of ways that rehabilitation counselors can assist persons with post-polio syndrome. Although prognosis is yet unclear, there are several strategies to assist individuals in maintaining functional abilities or in finding ways to accommodate limitations. This may involve examining the client's response to disability, issues of adhering to or rejecting proposed medical treatment, knowledge of treatment and services that might be most beneficial, and assistance in job modification and accommodations.

First, counselors may need to address the psychosocial issues related to developing a secondary disability. Examining the client's beliefs and views regarding the new problems are critical. How do they perceive the new symptoms in connection to the prior onset? Maynard (1995) suggests that those who are able to see the symptoms as a part of a larger chronic health condition cope better than those who view the symptoms as a new, acute problem. Helping clients gain perspective and knowledge about the disorder may be the initial step for counselors.

In combination with knowledge, issues of disability acceptance need to be explored. Persons who experienced polio years ago have developed their own strategies for dealing with the disease. As was discussed earlier, many chose to minimize or deny the extent of problems. Even with new problems evident, persons may be hesitant to seek services or indicate a need for assistance. This can hinder the process of identifying methods to promote wellness. Issues related to adhering to medical advice may also need to be discussed. Peach and Olejnik (1991) note the critical importance of clients following medical recommendations for treatment. They found that clients who follow medical and physical therapy suggestions offered by physicians have been able to control those elements in their lives that lead to neuromuscular overuse. Consequently, they lose less muscle strength and handle their new symptoms more successfully. Counselors may assist individuals to become active members of their rehabilitation teams so they can make informed decisions regarding their proposed medical treatment and symptom management.

Perhaps the most essential element for maintaining employment entails lifestyle modification. The literature consistently stressed the importance of individuals recognizing problem areas, finding ways to reduce stress and overuse of muscles, and developing strategies for energy conservation (Perry, Barnes, & Gronley, 1988; Young, 1991). Counselors can assist clients with these areas while consulting with and referring clients to other professionals and support systems (e.g., peer support, physiatrist, occupational therapist, psychologist) as well as support groups and independent living centers. Enlisting natural supports is also critical. This may also require knowledge about services and programs provided through hospitals and centers as well as the community. A rehabilitation counselor and client may not be able to address all of the issues discussed, but the counselor can provide information about additional programs and supports. Support groups for post-polio syndrome exist throughout the country and offer individual's an opportunity to interact with others experiencing similar problems. This may help normalize the event. There are also behavior modification programs (Bruno & Frick, 1991), activities developed to help clients adjust to or follow medical and clinical recommendations (Maynard & Roller, 1991), and therapy programs to enhance muscle strength and teach persons energy conservation techniques (Young, 1991). Rehabilitation counselors need to stay current about programs in their area through connections with self-help groups and community centers.

Conclusion

Rehabilitation counselors can be instrumental in helping individuals with post-polio syndrome develop and maintain work capabilities. Persons with post-polio syndrome may be unfamiliar with many of the services offered by vocational rehabilitation. Having lived with polio for years, they may not even perceive themselves as being someone eligible for services. Outreach to this population may be necessary.

Persons with post-polio syndrome are typically well-educated and have a history of employment (Bruno & Frick, 1991). With knowledge of the medical and functional limitations of this illness, counselors can assist clients; in planning and assisting job modifications, job re-structuring, energy conservation, adaptive equipment, pacing, rest, alternative employment, and other appropriate accommodations that meet the individual's specific need. Although some common problems appear to occur with post-polio (e.g., muscle weakness), persons with post-polio will differ in functional abilities and limitations. Improving the employment status of persons with post-polio depends on providing persons with post-polio syndrome knowledge that empowers them to make the critical changes necessary to maintain employment.

References

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Bruno, R. L., Galski, T, & DeLuca, J. (1993). The neuropsychology of post-polio fatigue. Archives of Physical Medicine and Rehabilitation, 74, 1061-1065.

Bruno, R. L., Sapolsky, R., Zimmerman, J. R., Frick, N.M. (1995). The pathophysiology of post-polio fatigue: A role for the basal ganglia in the generation of fatigue. Annals of the New York Academy of Sciences, 753, 257-275.

Eisenberg, M. G., Glueckauf, R. L., & Zaretsky, H. H. (Eds.) (1999). Medical aspects of disability: A handbook for the rehabilitation professional (2nd Ed.). New York: Springer Publishing Co.

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Feldblum, C. R. (1991). Antidiscrimination requirements of the ADA. In L. O. Gostin & H.A. Beyer (Eds.) Implementing the American with Disabilities Act, (pp. 57-74). Baltimore, Maryland: Paul H. Brookes Publishing Co.

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Phyllis A. Gordon, Ph.D., Associate Professor, Director of the Masters Program in Counseling, Department of Counseling Psychology and Guidance Services, Teachers College 614, Ball State University, 2000 University Avenue, Muncie, IN 47306-0585. E-mail: [e-mail]