postpolio sindrome - article

8/8/2019 postpolio sindrome - article

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NEW LOSS FROM AN OLD PROBLEM: HOW COUNSELORSCAN ASSIST PERSONS WITH POSTPOLIO SYNDROME

PHYLLIS A. GORDON, DAVID FELDMAN, GENE GRI FFING,

and SHARON L. BOWMAN

Ball State University, Muncie, Indiana, USA

For many persons who were diagnosed with polio years ago, late eect symptoms were not anti-

cipated.They believed they had gone through the more severe ramications of the illness and were

unaware that additional problems could occur. Currently, there are hundreds of thousands of per-

sons in the United States who are experiencing signicant diculties with old symptoms and are

alsodeveloping new physicaland emotional diculties. Unfortunately, little research has looked at

the ways counselors can assist this population.Therefore, the purposes of thisstudy were to identify

the physical and emotional problems confronting persons with postpolio and to help counselors gainan understanding of issues they feel might be most appropriate to address in therapy sessions.

Learning to live with a chronic illness is a substantial hurdle in many peoples

lives. Chronic health conditions require long-term attention in order for in-

dividuals to adapt and adjust to changing physical abilities as well as to their

long-held self-perceptions. Chronic illness has signicant implications for a

persons total lifestyle. Individuals oftengrapple with theirown self-perceptionsand face a loss of self-image (Gordon & Benishek,1996). In addition, chronic

illness can bring psychological, social, and vocational changes that aect the

persons current and future plans. Not surprisingly, learning to accept the losses

that chronic illness perpetuates is frequently more dicult for persons to deal

with than the actual illness itself. Consequently, counselors must recognize and

understand issues related to disability adjustment (Vash, 1981) and how in-

dividuals may adjust to specic health disorders (Maynard,1995). In addition,

Accepted for publication 23 October 2001.

Address correspondence to Phyllis A. Gordon, Department of Counseling Psychology, Ball State

University, Muncie, IN 46032. E-mail: [email protected]

Journal of Loss and Trauma,7: 239 24 9, 2002

Copyright # 2002 Brunner-Routledg e

1532-5024 /02 $12.00 + .00

DOI: 10.1080/108114402900 57648

239


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it is critical that counselors recognize the meaning individuals make of their

illness event, the beliefs they hold about the illness experience, and how that

inuences their ability to cope (Duval,1984; Kleinman,1988).

One illness that presents unique challenges for individuals has been identi-

ed as postpolio syndrome. Although it is a common belief that polio is largelya disease of the past, owing to preventive vaccines developed in the1950s, it has

become evident that many of the survivors of the original disease are begin-

ning to experience a reoccurrence of old symptoms and the development

of new problems. Since the 1980s, approximately one half of the original 1.63

million Americans who were diagnosed with polio years ago have reported

signicant and current diculties (Bruno & Frick,1991; Halstead,1998).

The typical pattern for most persons who survived polio was a gradual

improvement and stabilization of symptoms over time ( Jubelt & Drucker,

1999). Children who had been paralyzed in all four limbs or who had required

use of an iron lung to breathe frequently gained the ability to walk with or

without assistance (e.g., crutches, cane, wheelchair), became educated, had

relationships and married, built a career, and engaged in all of the normal

activities of life. The majority of survivors had long ago adapted and adjusted

to their illness. Suddenly, 30 to 40 years following diagnosis, new medical

problems developed, forcing these individuals to adapt to new loss and, attimes, return to address the old losses experienced during their childhood

(Bruno & Frick,1991; Frick & Bruno,1986; Maynard & Roller,1991).

Physical and Emotional Losses

The cause of postpolio syndrome is not yet clear. Numerous hypotheses con-

cerning the etiology of the disease exist, but two primary views are most

commonly reported. One belief is that the normal aging process, coupled with

the loss of anterior horns cells at the time of the original poliovirus, has re-

sulted in decreased functioning. Another perspective holds that overuse and

fatigue of weakened muscles during the past decades have resulted in the un-

expected late eects (Frick & Bruno, 1986). Despite the uncertainty of cause,

the symptoms reported are extensive. Individuals report progressive muscle

weakness, pain, and fatigue. Functional level is hindered, and persons whowere able to walk are now being forced to return to wheelchairs or other

assistive devices (Halstead, 1998; Jubelt & Drucker, 1999). Concentration

problems, respiratory diculties, and sleeping disorders are also noted(Jubelt & Drucker, 1999; Young, 1991). According to Westbrook (1995), many

240 P. A. Gordon et al.


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individuals with postpolio syndrome now have diculty completing both

household tasks and job duties. Many ndthemselves no longer able to workor

only able to work part-time, or they may be forced to change careers relatively

late in life. Frequently, individuals with postpolio syndrome become depressed

or anxious as they begin to recognize the impact of the new problems on theirlives. Consequently, they experience loss across many dimensions of their lives.

Issues of Adaptation

The overriding task for all persons with chronic illness and=or disabilities,including those with postpolio syndrome, is to learn to adapt to their situation.

This adaptation requires individuals to face the losses illness has brought to

their lives and begin to make positive life decisions in spite of their misfortune.

Numerous researchers have attempted to identify the process by which this

can best be achieved. According to Marshak and Seligman (1993), adjustment

to disability depends largely on this redenition process, which is inuenced in

part by ``the degree to which ones body image is central to self-concept, and

the degree to which disability aects actual or longed for social roles and

activities (p. 69).In order to make this adjustment,Wright (1983) suggested that individuals

need to reevaluate their loss and make changes in which they (a) enlarge their

scope of values, (b) subordinate their physique, (c) contain the spread of the

disability, and (d) learn to base self-evaluation on assets. By this, she proposes

that individuals need to nd aspects of themselves to value other than physical

appearance and strength. One also must not allow the disabling condition to

consume ones entire identity. Persons need to recognize they are much larger

than their functional abilities, and therefore begin to judge themselves based

on what they can do as opposed to what they cannot do in comparison with

others. From a similar perspective, Charmaz (1995) describes a three-step

process by which individuals learn to adapt to their chronic health problem:

(a) assessing the initial impairment, (b) recognizing what the probable im-

pact will be on ones future, and (c) accepting the implications of the illness.

Neither of these models, though, address exactly the issues that postpolio

syndrome has brought.Current models of adjustment and acceptance of disability rarely include

aspects of secondary eects and never address problems that reoccur decades

beyond the original diagnosis. Consequently, many professionals workingwith those with postpolio have attempted to look at personality characteristics

Postpolio Syndrome 241


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and coping strategies for a better understanding (Bruno & Frick, 1991;

Maynard, 1995). Through this process, they attempt to identify both the posi-

tive and negative strategies individuals may use in dealing with new symp-

toms based on old behaviors. This is believed to be of importance, in part, due

to the unique life experiences of this population.It would appear that eectively assisting persons with postpolio requires an

understanding of their past histories related to polio. According to Bruno and

Frick (1991), many who were originally diagnosed with polio were children.

They were typically placed in hospital settings and separated from their par-

ents and other family members. Although they were frequently too young to

understand the gravity of their condition, they did feel the harm from their

illness and from being removed from parents and home. Treatments were of-

ten distressing and determined by parents and physicians without the patients

input. Bruno and Frick note that throughout this period, the exclusion of these

young patients in determining their own treatment actually allowed the ill-

ness to amplify in their minds. The authors suggest that one major coping

strategy patients developed was to comply completely with those in authority

and to deny their own fears, anxiety, and needs. Once these children returned

home, they continued to use those same strategies as they strove to minimize

the appearance and experience of disability.When adults began experiencing problems again years later, most were

unaware that this might occur. In addition, many had not associated with

others in the disability community, so they were faced with accepting their

new losses without the understanding and support of a larger community

(Frick & Bruno,1986). Moreover, many were forced to examine their current

problems without having dealt with the emotional consequences of the past

polio experience. This has placed the postpolio population at particular

emotional risk. From their work with persons with postpolio, Maynard andRoller (1991) identied three types of copers: passers, minimizers, and identi-

ers. Passers, owing to limited visible disability, were able to blend into thenondisabled community. Minimizers often attempted to deny the reality and

extent of their problems in order to achieve a sense of normalcy. Identiers

most typically were more severely disabled, so consequently they were unable

to hide their disability and had to develop an identity within the disability

community.Each type brings a unique heritage into a counseling session. According to

Maynard and Roller (1991), passers may have the most diculty in accepting

their new symptoms, having never gone completely through the grief process

for their prior disability. Minimizers may not accept the reality of their



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limitations or even recognize that there are problems to be addressed. In con-

trast, identiers may have a clearer understanding of themselves and disability

issues but are particularly susceptible to the new symptoms because of the

severity of the prior illness. They may be signicantly confronted with loss of

independence and functional abilities. All of these factors require considerablesensitivity and understanding from counselors as well as a recognition of dif-

fering strategies individuals may have used to handle their illness in the past.

According to Peach and Olejnik (1991), the manner in which a person views

his or her postpolio symptoms will inuence his or her level of compliance

with medical (i.e., appropriate medical treatments) and clinical (i.e., lifestyle

changes) recommendations. This is critical, as their research suggests that

those who comply either completely or partially have a much more positive

prognosis than those who are noncompliers. In studies, patients who have fol-

lowed clinical suggestions have maintained greater functional abilities than

patients who have not.

Despite the extensive problems related to postpolio syndrome, little re-

search has examined emotional issues from the perspective of the person ex-

periencing the late eects of polio. Most of the literature has come from the

medical profession, and little has looked at the issues that might occur in a

counseling session. Consequently, the purpose of this pilot study was twofold.The rst purpose was to begin to identify the types of emotional and physical

problems persons with postpolio are experiencing. The second purpose was to

develop a set of issues persons with postpolio syndrome feel that counselors

should consider when working with this population.

Method

Participants

The sample included 30 individuals who were experiencing postpolio syn-

drome and volunteered to complete a postpolio survey about their illness ex-

periences. Seven participants were male, and 22 were female (one left the

question blank). Twenty-eight identied as Caucasian, one as African Amer-

ican, and one left the question blank. Eighteen persons were married, eight

were divorced or separated, two were widowed, and two had never beenmarried. Ages ranged from 48 to 76 years, with a mean of 59.7 years. The age

of original diagnosis ranged from less than 1 year for some individuals to one

participant who had been diagnosed in early adulthood. The majority,though, were diagnosed before the age of 10 years.



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Procedure

Individuals were recruited through a postpolio newsletter distributed in a

midwestern state. A notice in the newsletter asked that interested volunteers

contact the researchers if they wanted to participate in a study regarding theirconcerns about having postpolio syndrome. Approximately 15 persons re-sponded to this request. Once they responded by phone and left a mailing

address, a survey with a stamped return envelope was sent to them. In addi-

tion, surveys were distributed at three support group meetings and during a

state conference for persons with this disorder. The survey asked for basic

demographic information and questioned individuals about past and current

medical problems, experiences with the medical eld, and ways in which

counselors might be benecial. Despite the considerable eorts to recruit abroad sample, the nal sample consisted of 30 individuals.

Results

Postpolio creates a number of problems that counselors may address when

working with this population. Understanding physical and emotional con-cerns is a major step in the counseling process.

Physical Concerns

In order to examine physical problems, participants were given a list of 36

symptoms (e.g., joint pain, achy muscles, cold feet, daytime sleepiness, shallow

breathing, poor concentration) that had been identied through the research

as being potential problem areas. They were also asked specic questions per-taining to their physician and treatment. As others have reported in previous

studies (e.g., Halstead,1998; Jubelt & Drucker,1999;Westbrook,1995), the ma-jority of participants in the current study rated diculties with tired and weak

muscles and muscle and joint pain as most problematic. The majority not only

reported that they experienced weakness in commonly used muscles but that

theyhad also developed new areas of muscle weakness. In contrast, respiratory

problems, cognitive diculties, and spinal pain were reported as problematicby less than one half of the participants. Sleeping problems at night and day-

time drowsiness were reported by about half of the sample.

The majority of participants indicated having diculty nding a physician

knowledgeable about postpolio syndrome or about treating their problems.



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When questioned about nding a physician, one participant reported that

` younger doctors do not understand. This statement highlights the diculty

related to new problems with a 30-year-old disease. Problems were often not

validated by these participants physicians or were attributed by these physi-

cians to other potential disorders.When noting diculty with treatment, oneparticipant related that ``he [the physician] sent me to a psychiatrist and en-

rolled me in a group to identify my secondary gains that I was getting due to

keeping myself sick. The current literature describes other individuals with

postpolio as having similar experiences (Westbrook,1995).

Emotional Concerns

Despite the obvious physical struggles many of the participants reported, less

than one fourth had ever sought out counseling to help deal with either their

original polio episode or more recent symptoms. In addition, only 40%

thought they would benet from seeing a counselor. In contrast, 67% felt that

support groups would be of value. Family members and friends were listed

as the main source of emotional support.

Although they had a lack of condence in counseling from a personal per-

spective, the vast majority thought counselors could help in general. Partici-pants reported that counselors could be most useful in helping persons learn

how to manage fatigue and develop pain management strategies as well as to

cope with further problems. A complete list of ways they saw counselors

assisting persons with postpolio syndrome is presented inTable 1.

As can be seen from the table, the majority of participants thought learning

how to deal with the physical ramications of their illness was important. Less

important to this group was dealing with issues of death or learning emotional

strength for coping. When participants were asked how these new problemsaected their lives, one reported losing the ability to` keep up with family and

friends. Two persons specically noted their new loss of independence andsocialization as being one of the more troubling aspects of their illness. Nearly

allof the participants reported negative eects the illness now hason their lives.

Discussion

Despite the small number of participants, this pilot study provides some

useful information for counselors who are working with individuals withpostpolio syndrome. Although generalcounseling strategies and techniquesare



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necessary, a specic understanding of the experience of chronic illness and an

awareness of the loss it brings are essential to meet the actual needs of those

with health problems. Counselors should not anticipate that persons with

health conditions readily seek help from professionals outside of the medicaleld. If a person with a health problem does seek counseling, the counselor

needs to know the physical and functional limitations related to his or her

disorder in order to establish credibility with the client. This is critical before

any emotional factors or issues can be addressed. This may be especially true

TABLE 1 Participants Endorsement of Appropriate Counselor Interventions=Areas ofNeeded Help

Statements endorsed by 80% of participants or more

1. Learning how to manage fatigue

2. Information about new technologies that might aid in daily functioning3. Concerns about further losses in mobility

4. Learning pain management strategies

5. Learning how to manage disability

6. Dealing with fears and anxiety regarding further problems

7. Worries regarding a further loss of functioning in daily activities

Statements endorsed by 60%^79% of participants

1. Finding ways to adjust to your environment

2. Worries about how your disability might affect you financially3. Learning time management skills

4. Exploring how to maintain or enhance your current quality of life

5. Learning how to deal with the uncertainty of a chronic health condition

6. Concerns about becoming dependent on others for care

7. Learning about new ways to deal with reduced mobility

8. Dealing with fears of social isolation

9. Understanding whether your symptoms are related to aging

10. Learning about nutritional information for a healthier lifestyle

11. Worries about how your disability might affect your family

Statements endorsed by 40%^59% of participants

1. Addressing sleep problems

2. Worries about how postpolio might affect your relationships

3. Learning how to cope emotionally with the stress of a chronic health condition

4. Help in identifying your strengths

Statements endorsed by less than 39% of participants

1. Addressing concerns dealing with flashbacks or disturbing dreams

2. Concerns about death



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with postpolio syndrome, which is the result of a disease with which many

American doctors are unfamiliar.

Examination of the impact of disability on a persons self-esteem and self-

perception is critical. Rehabilitation literature focused on adjustment to phy-

sical disability has long recognized the impact of stigma and negative publicattitudes on the self-concept of persons with disabilities (Schweitzer, 1982).

Therefore, counseling should help individuals to understand more clearly the

impact the illness has had on their lives. Counselors should provide opportu-

nities for individuals to discuss issues of self-esteem and their own perception

of disability (Gordon & Benishek,1996). As many polio survivors may not be

aware of other survivors, even in their own community, the clients percep-

tions of disability are very important.

Furthermore, counselors will want to discern the reasons the person seeks

counseling. As can be seen from this study, few persons with postpolio syn-

drome recognize the personal benet it might provide. Whether this is due

to a lack of knowledge about counseling, an early minimization of the im-

pact of their polio, or other reasons is not known. The participants in the

current study tended to identify behavior interventions (e.g., information

about the illness and new technologies, learning pain management strate-

gies) as most helpful. Perhaps counselors should address issues such as thesebefore approaching the more complex issues related to disability acceptance.

Counselors may need to also educate individuals about the counseling pro-

cess and all of the areas that are open for discussion (e.g., sexuality, anger,

depression).

Finally, counselors need to address the current issues of loss with both the

individual and his or her family. Recognizing how individuals perceive and

adjust to loss is essential, as noted by Grzesiak (1979):` The importance of what

a person has lost is only meaningful within the total context of that particularindividuals life (p. 512). Further research is also required that examines the

impact of a second disability experience on the psychosocial adjustment ofindividuals. Little research has examined the experience of essentially be-

coming ` re-disabled. How are these new losses experienced? What new and

old emotions do they trigger? As noted earlier, some clients have not dealt

with the original emotional loss, much less the new losses. Therefore, counse-

lors need to recognize the individuals coping history and mechanisms cur-rently employed and their perceived eectiveness in a radically changed but

all too familiar physical and emotional circumstance. Counselors cannot

anticipate that all persons with postpolio syndrome will react in similar ways

to the new occurrence of problems. Instead, they should strive to learn more



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about the implications of the illness, the emotional ramications of disability,

and the perception of the event that the individual client holds.

References

Bruno, R. L., & Frick, N. M. (1991). The psychology of polio as a prelude to post-polio seque-

lae. Orthopedics, 14,1185^1193.

Charmaz, K. (1995). The body, identity, and self: Adapting to impairment. Sociological Quar-

terly, 36, 657^680.

Duval, M. L. (1984). Psychosocial metaphors of physical distress among MS patients. Social

Science and Medicine, 19, 635^638.

Frick, N. M., & Bruno, R. L. (1986). Post-polio sequelae: Physiological and psychologicaloverview. Rehabilitation Literature, 47(5^6),106^111.

Gordon, P. A., & Benishek, L. (1996). The experience of chronic illness: Issues of loss and

adjustment.Journal of Personal and Interpersonal Loss, 1, 299^307.

Grzesiak, R. C. (1979). Psychological services in rehabilitation medicine: Clinical aspects of

rehabilitation psychology. Professional Psychology, 10, 511^520.

Halstead, L. S. (1998). Post-polio syndrome. Scientic American, 278(4), 36^41.

Jubelt, B., & Drucker, J. (1999). Poliomyelitis and the post-polio syndrome. In D. S. Younger

(Ed.), Motor disorders (pp. 381^395). Philadelphia: Lippincott Williams & Wilkins.

Kleinman, A. (1988).The illness narratives. NewYork: Basic Books.

Marshak, L. E., & Seligman, M. (1993). Counseling persons with physical disabilities:Theoretical and

clinical perspectives. Austin,TX: Pro-Ed.

Maynard, F. M. (1995). Managing the late eects of polio from a life-course perspective.

Annals of the NewYork Academy of Sciences, 753, 354^360.

Maynard, F. M., & Roller, S. (1991). Recognizing typical coping styles of polio survivors

can improve re-rehabilitation. AmericanJournal of Physical Medicine and Rehabilitation, 71(2),

70^72.

Peach, P. E., & Olejnik, S. (1991). Post-polio sequelae: Eect of treatment and non compliance

on post-polio sequelae. Orthopedics, 14(11),1199^1203.

Schweitzer, N. J. (1982). Coping with stigma: An integrated approach to counseling physically

disabled persons. Rehabilitation Counseling Bulletin, 26, 204^211.

Vash, C. L. (1981).The psychology of disability. NewYork: Springer.

Westbrook, M. T. (1995). Changes in post-polio survivors over ve years: Symptoms and reactions to

treatment. Paper presented at the 12th World Congress of the International Federation of

Physical Medicine and Rehabilitation, Sydney, Australia.

Wright, B. A. (1983). Physical disability: A psychosocial approach (2nd ed.). New York: Harper &

Row.

Young, G. R. (1991). Energy conservation, occupational therapy, and the treatment of post-

polio sequelae. Orthopedics, 14,1233^1239.



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Phyllis A. Gordon is an associate professor in the Department of Counseling

Psychology and Guidance Services, Ball State University. Her areas of interest in-

clude chronic illness, gender and adaptation to disability.

David Feldman is a professor in the Department of Special Education, Ball State

University. His research focuses on severe disability and natural lifestyle learning.

Gene Gring is a doctoral student in the Department of Counseling Psychology

and Guidance Services, Ball State University. Research interests include issues of

creativity and spirituality.

Sharon L. Bowman is a professor in the Department of Counseling Psychology

and Guidance Services, Ball State University. Her research areas include career

and multicultural issues.


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