PSN Library Files

Changes in Post-Polio Survivors Over Five Years: Symptoms and Reactions to Treatments.

Mary T. Westbrook, PhD.

Faculty of Health Sciences, The University of Sydney.

Proceedings of the 12th World Congress, International Federation of Physical Medicine and Rehabilitation, Sydney, March 1995.

Lincolnshire Post-Polio Library copy by kind permission of the author.

Mary T. Westbrook, PhD

Faculty of Health Sciences

The University of Sydney

ABSTRACT

A group of 176 people with post-polio syndrome, identified using Ramlow et al’s (1992) criteria, took part in a 5 year follow-up survey. Most reported increased muscle

weakness (91%), fatigue (91%), muscle pain (80%), joint pain (64%) and changes in walking (60%). Increases in other symptoms occurred in less than half the group. Cramps, sensitivity to cold, muscle atrophy and muscle twitching were the symptoms most likely to have stabilised. The average respondent reported greater difficulty in carrying out 4 of the 8 activities of daily living investigated. Respondents were

significantly less anxious and depressed about their condition at follow-up. Degree of post-polio changes reported at the time of the first survey was a better predictor of decline during the five years than were initial polio histories or psycho-social variables. Health practitioners most likely to have been consulted were general practitioners and physiotherapists. Specialists in rehabilitation medicine were rated as providing more beneficial treatment than other medical practitioners. Treatments reported to provide good symptom relief included massage and water activities but not exercise. Life style modifications associated with pacing, reduced activity and rest were particularly effective. Overall 68% of respondents considered there was much they could do to control post-polio symptoms.

There have been relatively few longitudinal studies of people with post-polio syndrome and these have concentrated on changes in muscle strength. Researchers who have reported no significant loss of muscle strength at the time of follow-up (Agre & Rodriguez, 1991; Munin et al., 1991; Munsat et al., 1987) have retested their subjects after relatively brief periods of time (one year in the case of Agre & Rodriguez)

and/or have used very small samples. Studies which have encompassed longer time spans report a gradual progression of symptoms. Mulder et al. (1972) found a decline in 34 cases whom they observed over a period of from one to eighteen years. Dalakas et al. (1986) conducted an eight year follow up of 27 cases and reported an average loss of muscle strength of 1% per year. While the meaning of this value has been questioned (Grimby et al., 1994) as it was based on scores derived from manual muscle tests (which are qualitative rather than quantitative in nature) Dalakas et al.’s results suggest that typically muscle strength declines. Grimby et al. (1994) measured knee muscle strength in 20 polio survivors whom they had studied five years previously. At that time only 12 reported post polio symptoms. At follow-up subjects were asked whether or not they had experienced any new weakness in their legs. The muscle strength of the former group (those reporting new weakness) was found to have decreased significantly and far more than could he attributed to normal ageing. Some losses were also observed in people who had described their strength as stable. In their conclusion Grimby et al. emphasised the validity of post-polio subjects’ perceptions of increased weakness.

Thus to date research has concentrated on loss of muscle strength rather than on the progression, stabilisation or emergence of other post-polio symptoms and the effects of such symptoms on people’s lives. As Dalakas et al. (1986) observed, relatively slight tosses in muscle strength have “a substantial effect on neuromuscular function in patients in whom polio had caused severe disability and limited muscle reserve i.e. patients who at best were functioning below 50 percent of their total strength” (p. 962). While many researchers have examined the effects of particular treatments such as drugs or exercise protocols on post-polio symptoms (e.g. Fillyaw et al., 1991; Trojan et al., 1993), no one has surveyed patients about the range of treatments and life style changes they have adopted in their attempts to cope with post-polio symptoms or how successful these have been in providing symptom relief.

The first aim of the present research was to follow up people identified five years previously as having post-polio syndrome in order to determine whether their physical symptoms had progressed or new symptoms had emerged, whether they were experiencing any new difficulties in performing daily living activities and whether the elevated levels of anxiety and depression found in the group at the time of the first survey had altered (Westbrook, 1991, 1994). The second aim of the study was to identify the treatments respondents had received and the life style modifications they had made in their attempts to cope with post-polio symptoms and to ascertain how successful these were in relieving symptoms. A third aim of the present study was to identify factors associated with deterioration in health status over the time. Severity of initial attack of polio has been shown by a number studies (Jubelt & Druker, 1993; Trojan et al., 1994) including the initial survey in the present research (Westbrook, 1991) to be the best predictor of whether a polio survivor will develop late effects. Does this also predict progression of symptoms?

METHOD

Five years previously a mail survey of 318 polio survivors had been conducted to examine their health status (Westbrook, 1991). These questionnaires were distributed primarily by post-polio support groups in two states. They sent questionnaires to members and to all survivors who contacted them following media publicity concerning late effects of polio. Of the 280 respondents who wrote their addresses on the questionnaire to indicate their willingness to take part in a follow-up survey, 217 were identified as having post-polio syndrome using the criteria Ramlow et al. (1992) demonstrated to be a valid indicator of physicians’ diagnoses of the syndrome. Of these 217 who were mailed the follow-up questionnaire, 176 (81 %) completed it, 14 had moved and had no forwarding address, 8 had died, 2 returned their questionnaires late and 18 did not respond.

The characteristics of the respondent sample are shown in Table 1. Age at follow-up ranged from 33-77

years and averaged 57 years. The median age at the onset of polio had been 8 years. Fifty-four percent of the sample were hospitalised for over six months. The Klingman index (Klingman et al., 1988) of severity of initial attack assigns one point for each limb affected by polio and one for back and for chest. Forty five percent of the sample obtained a score of four or more.

The questionnaire consisted of 31 questions. Those relevant to this presentation will be described with the results.

RESULTS AND DISCUSSION

Changes in Symptoms

Numerous studies (e.g. Halstead & Rossi, 1985; Westbrook, 1991) have demonstrated that the most frequent post-polio symptoms are muscle weakness, fatigue and muscle pain. The present follow-up study found that these were the symptoms most likely to be reported as having increased over time. As shown in Table 2, 91% of respondents said that they had experienced new or increased muscle weakness and fatigue over the past five years and 80% reported new or increased muscle pain.

Respondents were asked whether they had experienced any of 12 other commonly reported post-polio symptoms in the last five years and, if present, whether the symptom had increased or been stable over the period. Table 3 shows the percentages of respondents for whom symptoms had emerged or increased. This was most likely to occur in the case of joint pain (64% of the group), changes in walking (60%) and sensitivity to cold (48%). Symptoms most likely to be described as present but stable over the five years were cramps (35% of group), sensitivity to cold (34%), muscle atrophy (33%) and muscle twitching (30%). Overall the average respondent reported that eight symptoms emerged, or become worse in the period between the surveys.

Participants were asked whether they were experiencing any new difficulties in eight activities of daily living. The average respondent reported that his/her ability to carry out four of the activities was worse than five years previously. Meeting the physical demands of job, household choices [sic] and daily activities was described as harder by 87% of the sample. Increasing problems were experienced in climbing stairs by 85% (of those able to do so), in walking on level surfaces by 62% (of those able to walk), in getting in and out of bed (49%), in taking a bath or shower (48%), in getting dressed (40%), in using the toilet (28%) and in feeding oneself (8%).

At the time of first survey 31(18%) of the respondents included in the second survey reported that they had retired early because of post-polio symptoms. Of the 83 who were in employment during the next five years many were forced to make changes at work because of their symptoms. Some retired early or stopped work for the time being (23%), moved to part-time employment (13%), changed to less tiring work (8%) or changed their work routines (10%).

Survivors were more likely to use an aid or assistive device at follow-up (80%) than at the time of the first survey (62%) and people who used aids tended to use more (1.3 aids as apposed to 1.9 aids five year later). New aids most likely to have been adopted were walking sticks (18%), in-shoe orthoses (12%), manual (9%) or electric wheel chairs (8%) and electric scooters (6%).

In both surveys people were asked to write an account of their feelings about having post-polio symptoms. These accounts were content analysed to compare the levels of anxiety and depression that people were experiencing about their post-polio problems on the two occasions. Gottschalk and Gleser (1969) developed content analysis scales which may be applied to verbal material to provide valid and reliable

measures of feeling states. Particular words and references are scored and a correction factor is applied to take account of the length of the verbal sample obtained from the subject. These scales have been shown to be valid when applied to Australian English (Viney & Manton, 1973). In the present study Gottschalk

Gleser scales were applied to respondents’ accounts to measure anxiety (Total Anxiety Scale) and depression (Hostility Directed Inward Scale). Respondents expressed significantly greater anxiety closer to the onset of their symptoms than they did five years later (t = 4.4, p < .001, see Table 4). They were also significantly less depressed five years later (t = 4.4, p < .001, see Table 5).

Thus five years after the initial survey this group of people with post polio syndrome reported a marked increase in physical symptoms. The validity of respondents’ reports of symptom changes are supported by Grimby et al’s (1994) findings that polio survivors accurately report loss of muscle strength. An increase in survivors’ symptoms was associated with greater difficulty in carrying out daily activities and increased use of assistive devices. However the emotional distress that the group were experiencing closer to the onset of post-polio syndrome had significantly lessened. Despite an increase in symptoms most people were feeling better. However it should be noted that the anxiety and depression scores found in the follow up survey indicate that survivors were still experiencing considerable stress (Westbrook & Viney, 1977).

Reactions to treatments

In the five years between surveys the typical respondent consulted health practitioners from four professional groups regarding post-polio symptoms. The medical practitioners most frequently consulted were general practitioners (consulted by 86% of sample), specialists in rehabilitation medicine (40%), orthopaedists (39%) and neurologists (20%). Respondents were asked to rate the treatment they received as either “very helpful”, “some help” or “no help”. Table 6 shows the ratings assigned to their treatments by respondents consulting each medical speciality. Specialists in rehabilitation medicine were far more likely to be perceived as providing effective treatment and far less likely to be rated as providing no help than were other medical practitioners. Orthopaedists were the group least likely to be perceived as having been very helpful. The results indicate that many polio survivors are not being referred to the medical specialty most attuned to their needs. Although exact figures are not available, respondents’ comments suggested that many took the initiative in requesting their general practitioners for referrals to rehabilitation specialists after hearing through polio support group literature about these specialists’ work in post-polio clinics.

Practitioners from five allied health professions were consulted by over 20% of respondents. Physiotherapists were the group of health practitioners who were the second most likely to be consulted by survivors (61%). The consultancy rates for the other professions ranged from 31% for orthotists to 22% for chiropractors. Table 7 shows respondents’ satisfaction with treatments provided by allied health practitioners. Podiatrists and orthotists received the highest ratings. This may reflect the more specific problems about which they are typically consulted. It is noteworthy that chiropractic which has received little attention in the post-polio literature had more satisfied and fewer dissatisfied clients than did physiotherapy. This dissatisfaction may be partly due to prescription of exercise for patients for whom it is inappropriate (Dean et al., 1989; Halstead, 1994). Many treatments are prescribed by a range of health practitioners or may be self-prescribed. The survey identified twelve treatments which had been used by 10% or more of respondents in attempts to relieve post-polio symptoms (See Table 8). These ranged in frequency of adoption from 45% for taking analgesics to 10% for attending a stress management course. Again respondents were asked to rate whether the treatments were “very helpful”, “some help” or “no help” in relieving symptoms. Table 8 reveals that massage was found to be particularly helpful (67% of consumers rated it very helpful) as were water activities such as hot baths (59%) swimming (47%) and hydrotherapy (43%) although water aerobics (29%) was judged as less effective. Exercise programs

received a relatively low satisfaction rating (25%) and the highest dissatisfaction rating (31%). Special shoes were found to be very effective by the majority (55%) of those who adopted them. Analgesics provide good symptom relief for only a third of consumers.

Making life style changes was a common way of attempting to relieve symptoms. The majority of respondents reported that they now rested more (78%), had reduced their physical activity (69%), paced themselves (64%) and planned their lives more efficiently (53%) in an attempt to relieve symptoms. Approximately a third were getting their families to help more (39%), were employing household help, had bought special equipment/furniture and had modified their homes (all 31%). As shown in Table 9 all of these strategies were found to he very helpful by over half of those who adopted them and almost no one found them to be totally ineffective. Thus a range of treatments and lifestyle changes were reported as helpful in relieving post-polio symptoms. Two-thirds of the group (68%) agreed with the statement “There’s a lot I can do to control post-polio symptoms” although 79% acknowledge that “I worry about how much worse my post-polio symptoms will get”.

Factors associated with progression of symptoms

Severity of original attack of polio has been the factor most frequently found to predict risk of postpolio syndrome (Trojan et al., 1994; Westbrook, 1991). The relationship of severity of initial attack to degree of progression over the five year period was examined. Severity of initial polio as measured by the Klingman index, (Klingman et al., 1988) did not correlate significantly with progression as measured by the number of new or increased symptoms emerging over the five year period (r = .03, p > .05). However severity of initial attack did correlate significantly with current severity of condition as measured by the Klingman index (r = .52, p <.01). In other words people who were initially most severely affected by polio were still those most severely affected but severity of initial attack of polio did not predict degree of progression of post-polio symptoms once they had appeared.

At the time of the initial survey, severity of post-polio syndrome was measured in three ways viz. number of post-polio symptoms reported, number of activities of daily life that had become more difficult to carry out and number of body parts in which recent changes had been observed (Westbrook, 1991). Each of these correlated significantly with progression over the five years as measured by the number of symptoms that had emerged or intensified (r = .41, .22, .22 respectively, all p <.01). Other variables associated with respondents’ polio histories were examined viz, age at onset of polio, year in which polio was contracted, age at onset of post-polio symptoms and time since onset of post-polio. None were associated with progression over the five years of the study nor were the demographic factors of age or gender.

Progression was not significantly related to levels of anxiety (r = .12, p > .05) or depression (r = .09, p > .05) as measured by the Gottschalk Gleser scales at the time of the second survey. However progression was associated with the reporting of fewer positive and more negative recent experiences as measured by Bradburn’s (1969) scale of psychological well-being (r = -.28, p <.01). Thus there was evidence that those whose health had declined most were experiencing poorer quality of life.

Conclusion

The results confirm and elaborate the findings of previous lengthier longitudinal studies of post-polio syndrome (Dalakas et al., 1986; Grimby et al., 1994; Mulder et al., 1972) The syndrome typically appears to he progressive with the symptoms increasingly interfering with activities of living. However over time most people in the sample studied coped by trying a range of remedies, particularly treatments prescribed by health practitioners and life style modifications. Many of these helped to alleviate symptoms and

although respondents were physically less well at the time of follow-up, the group was significantly less anxious and depressed. However, respondents who had declined most over the five year period described their present lives less positively than did survivors whose symptoms had progressed more slowly.

Polio survivors who exhibited most syniptoms of post-polio in the initial survey were those reporting greater progression over the next five years. The reason why may become more apparent when the etiology of post-polio syndrome, which is still not fully understood (Jubelt & Druker, 1993), is elucidated.

REFERENCES

Agre, J.C. & Rodriguez, A.A. (1991). Neuromuscular function in polio survivors at one year follow up. Archives of Physical Medicine and Rehabilitation, 72, 7-10. [PubMed Abstract]

Bradburn, N.M. (1969). The Structure of Psychological Well-being. Chicago: Aldine.

Dalakas, M.C., Elder, G., Hallett, M., Ravits, J., Baker, M., Papadopoulos, N., Albrecht, P. & Sever, J. (1986). A long-term follow-up study of patients with post-poliomyelitis neuromuscular symptoms. New England Journal of Medicine, 314, 959-963. [PubMed Abstract]

Dean, E., Ross, J. & Mcintyre. D. (1989). A rejoinder to “Exercise programs for patients with postpolio syndrome: A case report”: A short communication. Physical Therapy, 69, 695-699.

Fillyaw, M.J., Badger, G.J., Goodwin, G.D., Bradley, W.G., Fries, T.J., Shukla, A. (1991). The effects of long-term non-fatiguing resistance exercise in subjects with post-polio syndrome. Orthopedics, 14, 1253- 1256. [PubMed Abstract]

Gottschalk, L.A. & Gleser, G.C. (1969). The Measurement of Psychological States Through the Content Analysis of Verbal Behavior. Berkeley: University of California Press.

Grimby, G., Hedberg, M. & Henning G.B. (1994). Changes in muscle morphology, strength and enzymes in a 4-5 year follow-up of subjects with poliomyelitis sequelae. Scandinavian Journal of Rehabilitation Medicine, 26, 121-130. [PubMed Abstract]

Halstead, L.S. (1994). Determining prescribed activity. Paper presented at the Sixth International Post polio and Independent Living Conference. St Louis, USA.

Halstead, L.S. & Rossi, C.D. (1985). New problems in old polio patients: Results of a survey of 539 polio survivors. Orthopedics, 8, 845-850. [PubMed Abstract]

Jubelt, B. & Druker, J. (1993). Post-polio syndrome: An update. Seminars in Neurology, 13, 283-290. [PubMed Abstract]

Klingman, J., Chui, H., Corgiat, M. & Perry, J. (1988). Functional recovery: A major risk factor for the development of post-poliomyelitis muscular atrophy. Archives of Neurology, 45, 645-647. [PubMed Abstract]

Mulder, D.W., Rosenbaum, R.A. & Layton, D.D. Late progression of poliomyelitis or forme fruste amyotrophic lateral sclerosis? (1972). Mayo Clinic Proceedings, 47, 756-761. [PubMed Abstract]

Munin, M.C., Jaweed, M.M., Staas, W.E., Satinsky, A.R., Gutierez, G. & Herbison, G.J. (1991). Postpoliomyelitis muscle weakness: A prospective study of quadriceps strength. Archives of Physical

Medicine and Rehabilitation, 72, 729-733. [PubMed Abstract]

Munsat, T.L., Andres, P. & Thibideau, L. (1987). Preliminary observations on long-term muscle force changes in the post-polio syndrome. In: Halstead, L.S. & Wiechers, D. (Eds.) Research and Clinical Aspects of the Late Effects of Poliomyelitis. New York: March of Dimes, Birth Defects Foundation. [PubMed Abstract]

Ramlow, J., Alexander, M. LaPorte, R., Kaufmann, C. Kuller, L. (1992). Epidemology of post-polio syndrome, American Journal of Epidemiology. 136, 769-786. [PubMed Abstract]

Trojan, D.A., Cashman, N.R., Shapiro, S., Tansey, C.M. & Esdaile, J.M. (1994). Predictive factors for post-poliomyeltis syndrome. Archives of Physical Medicine and Rehabilitation, 75, 770-777. [Lincolnshire Library Full Text]

Trojan, D.A., Gendron, D. & Cashman, N.R. (1993). Anticholinesterase – responsive neuromuscular junction transmission defects in post-poliomyelitis fatigue. Journal of the Neurological Sciences, 114, 170-177. [Lincolnshire Library Full Text]

Viney, L.L. & Manton, M. (1973). Sampling verbal behaviour in Australia, Australian Journal of Psychology, 25, 45-55.

Westbrook, M.T. (1991). A survey of post polio sequelae: Manifestations, effects on people’s lives and responses to treatment. Australian Journal of Physiotherapy, 37, 89-102.

Westbrook, M.T. (1994). Disability as a life course: Implications of early experiences for later coping. Paper presented at the Sixth Post-Polio and Independent Living Conference. St. Louis, U.S.A.

Westbrook, M.T. & Viney, L.L. (1977). The application of content analysis to life stress research. Australian Psychologist, 12, 157-166.

Tables

Table 1

CHARACTERISTICS OF POST-POLIO SAMPLE
Number				176
Age at follow up survey
		Mean		57 years
		Range		33-77 years
Age at onset of polio
		Median		8 years
		Range		0-35 years
Time spent in hospital at onset
		None		13%

 

 

 

		1-6 months		32%
		7-12 months		19%
		over 1 year		35%
Initial severity of impairment Klingman* Index of severity of polio
		6		18%
		5		13%
		4		14%
		3		26%
		2		20%
		1		8%
*Klingman (1988) assigns one point for each limb involved, one for back and 1 for chest.

 

 

Table 2

MAJOR POST-POLIO SYMPTOMS: RESPONDENTS REPORTING NEW OR INCREASED SYMPTOMS OCCURRING IN THE 5 YEARS BETWEEN SURVEYS Symptom Percentages with new/increased symptoms Muscle weakness 91% Fatigue 91% Muscle pain 80%

 

 

Table 3

POST-POLIO SYMPTOMS: INCREASE AND STABLISATION OVER 5 YEARS
SYMPTOM		OVER PAST 5 YEARS
		New/increased		Stable		Not present
Joint pain		64%		23%		13%
Change in walking		60%		22%		18%
Sensitivity to cold		48%		34%		18%
Change in sleep patterns		39%		27%		34%
Tendency to fall		38%		27%		35%
Breathing difficulties		32%		13%		55%

 

 

 

Cramps		32%		35%		34%
Muscle atrophy		31%		33%		36%
Number or severity of headaches		29%		22%		49%
Muscle twitching		25%		30%		46%
Voice changes		22%		18%		60%
Swallowing difficulties		16%		18%		66%

 

 

Table 4

FEELINGS OF ANXIETY EXPRESSED NEAR ONSET OF POST POLIO SYMPTOMS AND FIVE YEARS LATER t = 4.7, p < .001 Anxiety Scale (Gottschalk and Gleser, 1969) (Scale scores references to death, mutilation, seperation, guilt, shame and diffuse anxiety)

 

 

Table 5

FEELINGS OF DEPRESSION EXPRESSED NEAR ONSET OF POST POLIO SYMPTOMS AND FIVE YEARS LATER

 

 

t = 4.4, p < .001 Hostility Directed Inward Scale (Gottschalk and Gleser, 1969) (Scale scores references to self blaming, discouragement, despair, self criticism, self deserving punishment, feelings of deprivation, disappointment, inability to meet expectations or others etc.)

 

 

Table 6

POLIO SURVIVORS’ RATINGS OF THE HELPFULNESS OF TREATMENTS PROVIDED BY MEDICAL PRACTITIONERS SPECIALITY RATINGS OF TREATMENT Very helpful Some help No help General practice 32% 43% 25% Rehabilitation Medicine 56% 33% 11% Orthopaedics 25% 49% 26% Neurology 25% 49% 28% (Percentages derived from numbers consulting each speciality)

 

 

Table 7

POLIO SURVIVORS’ RATINGS OF THE HELPFULNESS OF TREATMENTS PROVIDED

 

 

BY ALLIED HEALTH PROFESSIONALS

PROFESSION		CLIENTS’ RATINGS OF TREATMENT
		Very helpful		Some help		No help
Podiatrists		63%		33%		4%
Orthotists		58%		31%		11%
Chiropractors		51%		38%		10%
Physiotherapists		45%		38%		17%
Occupational therapists		45%		43%		12%
(Percentages derived from numbers consulting each profession)

 

 

Table 8

POLIO SURVIVORS’ RATINGS OF EFFICACY OF TREATMENTS IN REDUCING POST POLIO SYMPTOMS TREATMENT RATINGS OF TREATMENT Very helpful Some help No help Massage 67% 33% 0% Hot baths 59% 39% 2% Special shoes 55% 41% 5% Swimming 47% 35% 18% Hydrotherapy 43% 35% 22% Drugs for pain relief 33% 63% 4% Dietary changes 30% 63% 7% Water aerobics 29% 57% 14% Stress management course 28% 56% 17% Exercise program 25% 44% 31% Vitamins 25% 65% 10% Herbal remedies 19% 67% 14% (Percentages derived from numbers adopting each treatment)

 

 

Table 9

POLIO SURVIVORS’ RATINGS OF EFFICACY OF LIFE STYLE CHANGES IN REDUCING

 

 

POST POLIO SYMPTOMS

CHANGE		RATINGS OF EFFICACY
		Very helpful		Some help		No help
Employ household help		78%		22%		0%
Bought special furniture/equipment		71%		27%		2%
Modify home		70%		30%		0%
Pace self		62%		37%		2%
Planned life more efficiently		60%		40%		0%
Rest more		54%		44%		1%
Get family to help more		52%		43%		4%
Reduce physical activity		52%		48%		1%
(Percentages derived from numbers adopting each change)

 

 

THE HASSLES OF LIVING WITH POST-POLIO: SOME SURVIVAL STRATEGIES

Mary T. Westbrook, PhD

Paper presented at the Polio Consumers Forum, 12th World Congress of the International Federation of Physical Medicine and Rehabilitation, Sydney, March 1995

Lincolnshire Post-Polio Library copy by kind permission of the author

Mary T. Westbrook, PhD

Associate Professor

Department of Behavioural Sciences

Faculty of Health Sciences

The University of Sydney

I don’t need to elaborate on the hassles of living with post-polio syndrome to most of this audience. As Lorenzo Milam (15) a polio survivor wrote:

When (polio) first picks us up and throws us down, we think that we can beat it. Learn to walk; do it gracefully, so no one will know what little we have. Become independent: how do they say it? ‘I’ll be my own man’. They never tell us about Phase Two: when the ageing nerves begin to weaken. What we learned to do so smartly after the fire had passed over us, we watch disappear again. Our victories last for … thirty years – and then the referee comes up to us, blows the whistle, and tells us that we’re out, after all. What we gained, we lose (p. 59).

As for coping with the problems of post-polio, while the experts such as doctors and therapists can give valuable advice, the true experts are polio survivors themselves. They have tried a wide range of strategies in their own lives and know from experience how helpful these are (or are not) in reducing the physical symptoms and emotional upsets of having post-polio syndrome.

COPING STRATEGIES OF SURVIVORS

In 1988 I surveyed over 300 polio survivors (24) I asked them to describe the treatments that had helped or not helped, reduce their symptoms, changes they had made in their lifestyles in their attempts to cope with post-polio, and the advice they would give to someone who developed post-polio symptoms. Those answers yielded a wide range of coping strategies.

Five years later (25) I followed up those respondents who had post-polio syndrome. (These people were identified using the criteria developed by American researchers (19) which have been shown to be a valid way of detecting people whom physicians diagnose as having the syndrome). Of the 217 people who were mailed a follow-up questionnaire 176 (81%) completed them. The second survey questionnaire systematically listed the numerous coping strategies that respondents had identified previously and asked survivors whether they had used each strategy. If they had adopted it, they were asked to rate it as ‘very helpful’, ‘some help’ or ‘no help’ in relieving physical symptoms or reducing the personal problems of postpolio.

Treatments that Relieve Symptoms

The treatments most frequently tried by survivors are listed in Table 1. (This paper does not consider treatments specifically linked to consulting a member of a health profession eg physiotherapy, chiropractic or a visit to a post polio clinic. These treatments were included in the survey andare discussed elsewhere (25)). In some instances treatments were prescribed by a health practitioner, in other cases they were self prescribed or suggested by a friend. The figures in the brackets beside each treatment listed in the table, indicate how many people in the survey tried each treatment. So while approximately a third or more had taken drugs for pain relief and undertaken swimming or exercise programs, relatively few had tried yoga, counselling or relaxation courses. The treatments are arranged in order from those receiving the most ratings of ‘very helpful’ in providing symptom relief (massage, hot baths, special shoes, swimming and hydrotherapy), to those receiving the fewest (herbal remedies).

As Table 1 shows, certain forms of treatment provided at least some symptom relief to virtually everyone who adopted them viz massage, hot baths, counselling, drugs for pain relief and special shoes. The figures in the ‘No help’ column also indicate that some treatments were found by a relatively large number of users to provide no symptom relief. This was particularly so for exercise programs. Exercise remains a controversial form of treatment for post-polio syndrome (5, 12). Recently Halstead (10) has developed a five level, limb-specific classification system of polio limbs. On the basis of this classification, recommendations are made as to what, if any, type of exercise program should be undertaken.

Life Style Changes that Reduce Symptoms

Table 2 lists the major life style changes survivors have adopted in their attempts to relieve post-polio symptoms. Comparison of the figures in the brackets in Tables 1 and 2 (which show the percentage of respondents using each strategy) indicates that respondents were more likely to have made life style changes than to have tried the treatments listed in Table 1. Every change was adopted by almost a third or more of the group. Almost two thirds or more reported that they now rested more (78%), had reduced their physical activity (69%) and paced themselves (64%). The results show that life style changes tended to be found more helpful in reducing symptoms than most of the treatments listed in Table 1. For example, employing household help, buying special furniture and equipment and making home modifications were found to be very helpful by 70% or more of those who used these strategies. The results also show that all life style changes that were made provided some symptom relief to virtually everyone who adopted them. As the ‘no help’ column shows, only between 0-2 % of survivors reported that they received no benefits from these changes.

Personal and Social Strategies that Help

Beatrice Wright (26) in her classic book on the psychosocial aspects of living with disability identified a

shift in values as a helpful strategy for coping. She found that as well as mourning what they have lost, people who cope more effectively with disability begin to shift their interests and involvement to those aspects of life not closed to them. The survey findings listed in Table 3 show this is what many polio survivors have done and the great majority of those who used such strategies reported that they helped. For example, 75 % increased their involvement in interests they can still pursue (and only 4% said this was of no help), 72% developed new interests and leisure pursuits, and 65% found more creative ways to use the time they spent alone or resting. Many found that acquiring information about post-polio helped them to cope; 90% read more about post-polio and 89% subscribed to a post-polio newsletter. Only 2% reported they received no help from this reading. Others found that strategies of personal development such as developing their philosophy of life, or becoming a more spiritual person, were effective coping strategies.

It is interesting that while most of the personal strategies adopted were relatively effective (over half the people that used any of them rated them as ‘very helpful’ and very few users rated them as being of ‘no help’) the social or interpersonal strategies that were adopted proved more problematic. The social strategies described as most helpful were: asking friends of family members for help (55% and 52% respectively found these to be ‘very helpful’ but only 39% of respondents had ever asked a family member to help and 19% had asked a friend to do so). People were much more likely to say they had talked with their family (75%) or friends (74%) about post-polio problems but these activities received the lowest helpfulness ratings of any strategies (apart from some treatments). Forty percent of respondents found it very helpful to talk to family members and 23 % said friends were very helpful. For 17-18% of respondents these communications were of no help.

Implications of Findings on Coping

The findings of the survey show that polio survivors are using a wide range of strategies to cope with post-polio symptoms and problems. Many of the strategies that they rated as ‘most helpful’ involved making changes in their lives both at a practical and personal level. These were effective in helping people cope as was demonstrated by other findings from the research. In the five years between the two surveys, although the physical symptoms of most survivors in the group worsened, people became significantly less anxious and depressed about their health (25).

One of the messages that the findings have for polio survivors is that we need to realise our own abilities to cope, and to live creatively with our disability despite the fact that its causes and cure are yet unclear (12). Kat Duff (17) who had chronic fatigue syndrome wrote:

When pain and disability prove intractable… we feel betrayed by the promises of cures that can be found in almost every magazine, and forsaken by doctors, family and friends who cannot really help but keep suggesting another treatment. A man with debilitating diabetes finally told his doctor, ‘In the long run, I’ll go down this road myself. Neither you nor anyone else can prevent it or control it or understand it for me’(p. 38).

Similarly there is no complete cure for post-polio syndrome although health practitioners can provide treatments that reduce symptoms and prevent, or at least slow down, further decline. The experiences reported by the survivors in the survey reveal that they have broadened their perspective to include other strategies besides medical treatments as ways of coping with their increasing disability. What they found was that there was much they themselves could do at a life style and personal level that reduced symptoms and feelings of unhappiness.

THE NEED FOR SOCIAL SUPPORT

The responses of survivors to the survey questions concerning social support are of concern. The results show that many respondents are reluctant to ask for practical support from others. When they tried to talk with their families or friends the results were less than optimal. Even among those who talked about post polio with another polio survivor only 43 % said it was very helpful. Thus quite a number of survivors lack helpful social support of either a practical or emotional nature.

This is of concern as much research has shown that the support of family and friends can significantly reduce the stress people experience in difficult life situations such as illness (9). Campbell (4) found that family support had a very significant buffering effect for women with more severe post-polio syndrome. They were much less depressed and were more accepting of their disability than their counterparts who had little social support.

Interference from the Past

Answers that respondents gave to other questions in the survey suggest some of the reasons why many polio survivors find it particularly difficult to obtain support from others. The survey asked survivors to write an account of their early memories of when they contracted polio. For most, the initial experience with polio involved separation from their families for extremely long periods with very limited visiting. They suffered from paralysis, pain and frightening procedures and equipment, while being cared for by

distant and sometimes abusive staff. Respondents often described experiences similar to those of Deborah McKeen (14).

When I was five, I got polio. Numerous experiences with doctors, nurses and therapists gnaw at me… Because I had wet my bed I was paraded through a boys’ ward wearing a diaper with a bow attached… A nurse made me stay in a particularly painful position because I talked back to her. I can’t begin to count the number of times I was left naked, unable to cover myself, on view to anyone walking by. In an iron lung, I remember crying for my mother. The nurse punished my tears by turning the mirror so that I could see nothing but the holes in the ceiling and told me not to be a baby. I was a baby; I was five years old. I didn’t talk about these experiences to anyone. When I let myself think about them, I felt humiliated, embarrassed, frightened and dirty. It wasn’t until I was an adult and in therapy that I came to understand that what I had gone through was not medical care but medical abuse. Silence was the way I avoided confronting my pain. I had done nothing that warranted that sort of treatment; by holding it inside I was not allowing myself to feel the anger I had for being treated so abominably (p. 43).

Such ‘care’ of sick and disabled children was common until well past the mid-century (11) when the work of John Bowlby (2) alerted people to the long term harmful effects of separating children from their families.

Survivors’ written memories indicated that difficulties often continued after their return home from hospital. Negative attitudes toward people with disabilities were more prevalent than today. They were experienced primarily as exclusions that echoed earlier abandonment e.g. parties people weren’t asked to, friends who dropped away, venues that excluded or exhausted them, devaluing assumptions people made about them. Some people experienced overt rejection eg teasing and aggression from other children and occasionally even from their own families. Phillips (18) claims that modern western societies regard people with disabilities as damaged goods. As members of society, survivors tended to adopt its standards

and to agree that they did indeed fall short. Of course these painful and uncomfortable feelings were rarely acknowledged but they spurred survivors on to become super-achievers. Our mental equation seemed to be that if we were better than average in everything we could do this would cancel out the deficiency of our disability.

Leaving rehabilitation also meant that most survivors lost contact with each other so there was no one in their social group who had had experiences similar to their own and with whom they could talk. Also as Duff (7) pointed out there is a strong social taboo about talking about your disability. People may become uncomfortable because its makes them aware of their own vulnerability or presents them with a problem that is difficult, or often impossible, to solve.

Wright (26) has compared being disabled with membership of other minority groups. However, unlike members of most minority groups a person with a disability is usually the only member of his or her social circle who has a disability. Not only does no one fully appreciate your experiences but they cannot give you useful advice on how to cope. Furthermore, for most minority groups although members’ characteristics may not be valued by the wider society they are valued within the person’s immediate circle. Thus a Black person in a racist community typically has a family who share his/her experiences, can give him/her tips on how to cope and will instil pride in racial identity. No one ever told us that disabled was beautiful.

Asper (1) has described how such emotional abandonment in youth shapes the adult personality. She has found that as adults such people typically:

– Fail to acknowledge the degree of their early abandonment and suffering

– Fear later abandonment

– Are out of touch with their feelings

– Display false self sufficiency

– Demand impossible standards from themselves

– Feel excessive shame

– Respond to others’ needs but have little idea of what is good for themselves

– Are unable to ask for, or accept, help as they fear repetition of their early experiences – Lack compassion for themselves

Bruno and Frick (3) have found that many of these characteristics typify polio survivors. Such feelings of shame and fears of abandonment and negative responses from others seem to be important contributory causes of the fact that many survivors are not utilising their social networks to obtain support, particularly to obtain practical help. Those that do seek social support usually achieve less than optimal outcomes. It seems that survivors need to develop skills to increase the social support in their lives and enhance outcomes when they do seek support.

There are no simple answers as to how we can achieve this. Asper (1) argued that survivors of youthful abandonment need to face the pain of their earlier experiences. Although this can be very upsetting initially, she has found that it leads people to develop empathy with themselves, it increases their confidence in themselves and their joy in living. Some people have found counselling a helpful support in facing their past. Talking with an empathic and non-judgemental friend may be helpful although many people find it difficult to listen to and support a person who is very distressed.

Small support groups of polio survivors could provide opportunities to discuss the past. One of the most

positively received sessions at the Sixth International Conference on Post-Polio and Independent Living that I attended in St. Louis last year was a workshop entitled, ‘Polio history: Our stories must be told’. People recounted both negative and positive experiences. Empathising with others’ experiences made many acknowledge, for the first time, that their own experiences, which were similar to those of the speakers, were also worthy of empathy. Observing others’ courage led them to acknowledge their own.

If you lack a suitable confidant, then writing down your experiences (but not just thinking them over) has been shown to be a helpful way of reducing the distress associated with the past and providing insight into ways in which the past is interfering with finding solutions to present problems (17). Self help books such as those by Wheeler and Dace-Lombard (23) and Dowrick (6) may also be useful support tools.

Any revival of past memories is initially likely to arouse feelings such as distress and anger. Gradually however the past is placed in perspective. We understand that the ways we coped when we first got polio are not the best ways to cope with post-polio. We are now adults, with knowledge, power and resources that we lacked as children or young adults and the world has also changed since then. Attitudes toward people with disabilities are less negative and the majority of health practitioners have been educated to be at least somewhat more understanding of patients’ psychological and social needs than were many of the staff recalled in survivors’ accounts.

Developing Practical Skills

At a practical level we need to explore strategies for telling others about our needs and feelings in ways that lead to positive outcomes and do not diminish our feelings of selfworth. There is a dearth of ‘How-to be disabled’ books. Fullwood and Cronin (8) have written an excellent book called ‘Facing the Crowd’ which provides parents of children with disabilities with numerous practical strategies for coping with the ignorance, insensitivities and anxieties of the ablebodied. Many of their ideas are applicable to adults with disabilities and could be a useful basis for discussion in the context of support groups. One strategy that they discuss is ways of taking the initiative to shape other people’s responses. For example, friends may feel uncomfortable or uncertain when encountering your increasing disability. Often briefly mentioning what is happening, or asking for help, (eg ‘I find it difficult doing this now. I wonder if you’ll mind giving me a hand?’) will put the other person at ease and prevent the situation developing in ways that may upset you (eg feeling your friend wasn’t interested enough to ask about your health or didn’t care enough to bother helping you).

Other strategies that Fulwood and Cronin discuss include:

– Managing cliches (how to react to irritating statements and generalisations people make such as ‘God has chosen you for this special burden’, ‘I think you’re marvellous, I don’t know how you manage’, ‘Just look at Roosevelt and Marjorie Lawrence. People with polio have all had wonderful lives and have given the world so much’). Some of the strategies suggested for coping with cliches include: a) Developing short ‘pat’ answers that can be delivered in a light humourous fashion (eg ‘Yes I am pretty wonderful. I don’t know how I do it either’,’God has chosen me? I wish he’d asked me first’); b) Nonaggressively repeating the statement back in question form so that the speaker can reflect on its appropriateness (eg ‘Do you really think I’m marvellous? What would you have done?’) c) Make a statement of feeling or fact (eg In response to ‘I think you’re marvellous. I don’t know how you do it’ say ‘I don’t know either. I do know the going is very tough sometimes’) d) Decide to ignore what was said after evaluating the situation.

– Being assertive (eg Outlining the dilemma so people have a complete understanding of your problem; providing the ground rules eg family members will need to take turns in taking over a task you can no

longer manage).

– Knowing your own thresholds (eg when you’re fatigued it may be sensible not to visit a critical relative).

– Developing strategies for coping with difficult people (eg self talk, mental rehearsal, tension release).

Overall the aim of the book is to help people respond in social situations in ways that increase their own and other people’s satisfaction with the interaction. A support group of polio survivors could ‘brainstorm’ and list social situations members find difficult or upsetting. Then strategies such as those that Fulwood and Cronin suggest could be considered and applied to the problems. Discussion in support groups could

also examine the values that underlie much self-defeating behaviour particularly the over-valuation of independence and control which seem to be legacies of polio rehabilitation (3). Trieschmann (22) has identified these values as a major hindrance to ageing with dignity and self-esteem in western societies.

Developing Pride

Finally, learning about the Disability Rights movement (16,21) can help us to understand the meaning of our past and begin to take pride in what people with disabilities have achieved. Polio survivors were the first major group of people with disabilities to be integrated in western society and many have been active participants in the Independent Living and Disabled Rights Movements. Jenny Morris’s book (16) has been described as ‘a celebration of our strength and a part of our taking pride in ourselves, a pride which incorporates our disability and values it’ (p. 14). That is why I prefer the term polio survivor to terms such as polio victim or sufferer or disabled by polio. As Rosen (20) wrote in Disability Rag, ‘disabled’ is a negative term:

You cannot get away from the fact that ‘disabled’ means ‘not able’. There is no other meaning. ‘Survivor’ is a real word. It is not negative; it always conveys a sense of wholeness, of skill in just those ways we have had to be skilful. And it defines us both socially and politically within the framework we have had to live all these years. We have survived medically, morally, politically and economically. Those of us who are involved in the struggle to end our oppression are, simply, survivors (p. 8).

And as we continue to survive we are discovering new and different strengths which are celebrated in this poem by Lois Keith (13) who became a wheelchair rider (not wheelchair bound or confined to a wheelchair) as many polio survivors have become.

Tomorrow I am going to rewrite the English Language.

I will discard all those striving ambulist metaphors

of power and success

And construct new ways to describe my strength.

My new, different strength.

Then I won’t have to feel dependent

Because I can’t stand on my own two feet.

And I’ll refuse to feel a failure

When I don’t stay one step ahead.

I won’t feel inadequate if I can’t

Stand up for myself

Or illogical when I don’t

Take it one step at a time.

I will make them understand that it is a very male way

To describe the world.

All this walking tall

And making great strides.

Yes, tomorrow I am going to rewrite the English Language

Creating the world in my own image.

Mine will be a gentler, more womanly way

To describe my progress.

I will wheel, cover and encircle.

Somehow I will learn to say it all.

REFERENCES

1. Asper, K. (1993). The abandoned child within: On losing and regaining self-worth. New York. From International Publishing.
2. Bowlby, J. (1966). Child care and the growth of love. London: Penguin.
3. Bruno, R.L. & Frick, N.M. (1991). The psychology of polio as prelude to post-polio sequelae: Behaviour modification and psychotherapy. Orthopedics, 14, 1185-1193. [Lincolnshire Library Full Text]
4. Campbell, M. (1994). Later life effects of early life disability.·Comparisons of age-matched controls of indicators of physical, psychological and social status. California, Rancho Los Amigos Medical Center, University of Southern California.
5. Dean, E., Ross, J. & McIntyre, D. (1989). A rejoinder to ‘Exercise programs for post-polio syndrome: A case report’. Physical Therapy, 69, 695-699. [PubMed Abstract]
6. Dowrick, S. (1993). The intimacy and solitude self-therapy book. Melbourne: Mandarin. 7. Duff, K. (1994). The alchemy of illness. London: Virago.
7. Fulwood, D. & Cronin, P. (1986). Facing the crowd. Burwood, Victoria: Royal Institute for the Blind.
8. Friedman, H.S. & Di Matteo, M.R. (1989). Health psychology. Englewood Cliffs: Prentice Hall. 10. Halstead, L.S. (1993). NRH limb classification for exercise prescription in post-polio patients. In F. Lonnberg (Ed.). Proceedings of the Copenhagen Post-Polio Conference, Denmark. 11. Humphries, S. & Gordon, P. (1992). Out of sight. The experience of disability 1900-1950. London: Northcote House.
9. Jubelt, B. & Drucker, J. (1993). Post-polio syndrome: An update. Seminars in Neurology, 13, 283- 290. [PubMed Abstract]
10. Keith, L. (1994). Tomorrow I’m going to rewrite the English language. In L. Kejth (Ed.). Mustn’t grumble.·Writing by disabled woman. London: Women’s Press.
11. McKeen, D.G. (1992). Such a good little patient. Disability Rag, July, 43.
12. Milam, L.W. (1984). The cripple liberation front marching band blues. San Diego: MHO & MHO Works.
13. Morris, J. (1991). Pride against prejudice. London, The Women’s Press.
14. Pennebaker, J. (1990). Opening up: The healing power of confiding in others. New York: Avon Books.
15. Phillips, M. (1990). Damaged goods: Oral narratives of the experience of disability in American culture. Social Science and Medicine, 30, 849-857. [PubMed Abstract]
16. Ramlow, J., Alexander, M., LaPorte, R., Kaufmann, C. & Kuller, L. (1992). Epidemiology of post polio syndrome, American Journal of Epidemiology. 136, 769 786. [PubMed Abstract] 20. Rosen, S.L. (1983). I call myself a survivor. Disability Rag, May, 8.
17. Shapiro, J. (1993). No pity. People with disabilities forging a new civil rights movement. New York: Random House.
18. Trieschmann, R. (1972). Aging with dignity and control. New Mobility, 47.
19. Wheeler, E.G. & Dace-Lombard, J. (1989). Living creatively with chronic illness. Developing skills for transcending the loss, pain and frustration. California: Pathfinder Publishing. 24. Westbrook, M.T. (1991). A survey of post polio sequelae: Manifestations, effects on people’s lives and responses to treatment. Australian Journal of Physiotherapy, 37, 89-102.
20. Westbrook, M.T. (1995). Changes in post-polio survivors over five years: Symptoms and reactions to treatment. Proceedings of the 12th World Congress, International Federation of Physical Medicine and Rehabilitation, Sydney.
21. Wright, B. (1983). Physical disability: A psychosocial approach. New York: Harper and Row. Tables

Table 1	SURVIVORS’ RATINGS OF HELPFULNESS OF TREATMENTS IN RELIEVING POST-POLIO SYMPTOMS
TREATMENT¹	RATINGS OF TREATMENT²
	Very Helpful	No Help
Massage (29%)	67%	0%
Hot baths (28%)	59%	2%
Special shoes (25%)	55%	5%
Swimming (31%)	47%	18%
Hydrotherapy (26%)	43%	22%
Counselling (8%)	36%	1%
Yoga (5%)	33%	11%
Drugs for pain relief (45%)	33%	4%
Dietary changes (26%)	30%	7%
Water aerobics (12%)	29%	14%
Stress management course (10%)	28%	17%
Exercise program (31%)	25%	31%
Vitamins (29%)	25%	10%
Relaxation course (9%)	23%	12%

 

 

Herbal remedies (12%)	19%	14%
¹ Percentages of the 176 survivors who had adopted each treatment are shown in brackets. ² Survivors who had used each treatment rated whether they found it ‘very helpful’, ‘some help’ or ‘no help’ in relieving symptoms. Percentages rating a treatment ‘some help’ can be calculated by subtracting ‘very helpful’ and ‘no help’ percentages from 100 eg 33 % found massage was ‘some help’.

 

 

Table 2	SURVIVORS’ RATINGS OF HELPFULNESS OF LIFE STYLE CHANGES IN RELIEVING POST-POLIO SYMPTOMS
CHANGE MADE¹	RATINGS OF EFFICACY²
	Very Helpful	No Help
Employ household help (31%)	78%	0%
Bought special furniture/equipment (31%)	71%	2%
Modify home (31%)	70%	0%
Pace self (64%)	62%	2%
Planned life more efficiently (53%)	60%	0%
Rest more (78%)	54%	1%
Reduce physical activity (69%)	52%	1%
¹ Percentages of the 176 survivors who had adopted each change are shown in brackets. ² Survivors who adopted each change rated whether they found it ‘very helpful’, ‘some help’ or ‘no help’ in relieving symptoms.

 

 

Table 3	SURVIVORS’ RATINGS OF THE HELPFULNESS OF PERSONAL AND SOCIAL STRATEGIES IN COPING WITH POST-POLIO PROBLEMS
STRATEGY USED¹	RATINGS OF HELPFULNESS²
	Very Helpful	No Help
Become more involved in interests I can still pursue (75%)	65%	4%
Developed my philosophy of life (65%)	63%	4%
Read more about post-polio (90%)	60%	2%

 

 

Become a more spiritual person (developed my inner life) (62%)	58%	12%
Subscribed to a post-polio newsletter (89%)	56%	2%
Asked friends to help (19%)	55%	3%
Asked family to help (39%)	52%	4%
Used times I’m resting or alone more creatively (65%)	51%	9%
Developed new interests and leisure pursuits (72%)	50%	7%
Joined a post-polio support group (65%)	44%	11%
Talked about post-polio with other people who have had polio (68%)	43%	7%
Talked with my family about post-polio (75%)	40%	17%
Talked with my friends about post-polio (74%)	23%	18%
¹ Percentages of 176 survivors who had used each strategy shown in brackets. ² Survivors who had used each strategy rated whether they found it ‘very helpful’, ‘some help’ or ‘no help’ in coping with post-polio problems.