To Home Page of PHI website to PHI's Secure Shopping Cart
PHI's Education
About PHI Education Advocacy Research Networking to How to Donate to Membership Application

Post-Polio Health (ISSN 1066-5331)

Vol. 16, No. 2, Spring 2000

Read selected articles from this issue ...

Stress

An Antidote to Post-Polio Stress: Pleasure Seeking
Mary Westbrook, PhD, Sydney, Australia

No Mountain Too High
Nancy L. Caverly, OTR/L, Bland, Missouri

Air Travel with Mobility Aids
Grace R. Young, MA, OTR, Fresno, California

Post-Polio Research

News from the Czech Republic

Update on Global Polio Eradication

Post-Polio Bibliography

GINI's website: www.post-polio.org

Readers Write: Removing Barriers to Health Care: A Guide for Health Professionals; WHO document that clarifies definitions; Helen Hayes Hospital Centennial celebration

Spirit of ADA Torch Relay

FDR Statue

Registered to Vote?


Update on Global Polio Eradication

The world is about to witness another public health victory with the achievement of the global poliomyelitis eradication. Since the launch of the global polio eradication campaign at the World Health Assembly in 1998, countries have continued to make steady progress towards successfully interrupting the circulation of wild poliovirus. The number of polio cases has decreased from an estimated 350,000 in 1988, to some 5,200 reported cases in 1999. The proportion of the world's children living in polio-infected areas has dropped from 90% to less than 50 percent. The disease has already been eradicated from Europe, the countries of the Western Pacific, and large portion of the Middle East and Northern and Southern Africa. In 1991, the Americas became the first region in the world to eradicate polio.

At this point, the conclusion of the global eradication initiative depends on the efforts carried out by 30 countries in sub-Saharan Africa and South Asia. Many of these have either been affected by civil conflict or remain reservoirs of poliovirus. India, with 70% of the world's remaining polio cases, holds the key to the success of global eradication. WHO plans to accelerate its eradication and surveillance efforts in the endemic countries. Extra rounds of National Immunization Days (NIDs) in 2000 and 2001 will be conducted in Afghanistan, Angola, Bangladesh, Democratic Republic of the Congo, Ethiopia, India, Nigeria, Pakistan, Somalia and Sudan.

SOURCE: EPI Newsletter, Expanded Program on Immunization in the Americas, Volume XXI, Number 6, December 1999.  


An Antidote to Post-Polio Stress: Pleasure Seeking

Mary Westbrook, PhD, Sydney, Australia

Mary Westbrook, PhD is a psychologist who conducted the first Australian research into post-polio. She spoke at the GINI conference in 1994 and contributed to the recently revised Handbook on the Late Effects of Poliomyelitis for Physicians and Survivors. In 1998 she was made a Member of the Order of Australia for her service to people with disabilities through research into post-polio, physical disability and education in the health professions.

When talking about stress, we must distinguish between stressful events (stressors) and a person's reactions, both physiological and psychological, to such events (stress responses). There are some events that almost everyone would experience as very stressful: consider the late effects of polio. Lightening has struck us twice; the physical gains we achieved melt away and the lives we built are threatened on every side by ongoing losses such as forced early retirement or the inability to continue favourite social and leisure activities. How will it all end?

Post-polio is a chronic stressor in response to which our stress levels fluctuate. Such changes may be caused by happenings (a fall, a new symptom, lack of access, being dropped from a friend's social calendar) and/or by our state of mind and body (tiredness, pain level, other worries). When we feel stressed our post-polio symptoms get worse1. So life often becomes a vicious circle. We receive much advice on techniques to reduce both stress levels and symptoms of fatigue, pain and increasing weakness. So we learn to pace ourselves, slow down, delegate, have rests during which we do absolutely nothing, give ourselves permission to say 'No' (to all the nice things we want to do), meditate, do relaxation and stretching exercises, purchase aids and special equipment, and try massage and body therapies. Yes, many of these strategies do provide some relief, but they are also frequently sources of irritation, boredom, frustration and regrets that we are not otherwise engaged. Post-polio seems to have taken over our lives. While some of us manage to achieve Buddha-like serenity, many of us, I suspect, do these things in the hope that we will feel well enough to do a little bit of busy living again.

Polio survivors' reactions to our on-going stressors are often accompanied by the shame that Kitty Stein2, who has MS, describes. This shame response tells us, "I'm bad; it's me; I'm not dealing with it well," whereas the healthy response is, "Yes, I am having a hard time. How can I get help or help myself?" Stein goes on to advocate that people with chronic health conditions acquire a "nurturant" voice, and enter into a mutual, loving relationship with themselves. Unfortunately, self-nurturance is foreign to most polio survivors who are characterised by their self-criticism and their compassion for others but not themselves.3

In his research investigating factors related to Americans' feelings of well-being or happiness, Bradburn4 found that neither the number of positive nor negative events that people were experiencing in their present lives predicted their ratings of their overall happiness. However, the discrepancy between these two types of events was an excellent predictor. The greater the excess of positive over negative experiences, the higher a person's rating of happiness.

When I taught psychology to health professionals involved in rehabilitation, I suggested this equation had important implications both for them and their clients. When a person becomes disabled, there are usually deficits and losses that can never be cured or replaced. However, if we consider the person's overall life situation, there are often changes and additions that can be made that will increase the person's positive experiences and their overall well-being. Sad to say, rehabilitation programs concentrate more on providing vocational skills than the social and recreational skills that would serve disabled people well in their changed lives. Bradburn's model is a useful one for health practitioners in that it focuses their attention on what they can achieve for their clients and lessens feelings of helplessness or inadequacy that may develop if they concentrate only on the problems that cannot be solved.

Several psychologists have provided tips for the seeker of pleasure. In her recent book, polio survivor Rhoda Olkin writes of the importance of having something to look forward to and suggests this is especially important for people with disabilities because the effects of pain, fatigue, and weakness can occupy a large portion of time and erode our ability to find pleasure5. Olkin says that we need "four levels of positive future events:

Having to retire early from my university position led to a drastic reduction in my daily social contacts and particularly the interchange of stimulating ideas. A daily treat that substituted for this was joining mailing lists on the Internet. I belong to a number of post-polio lists and have joined many others related to my interests such as disability studies, L M Montgomery, mysticism and women's issues. Most mornings I receive about a hundred e-mails, some fascinating and maybe demanding a reply, and others quickly deleted. I read them with a cup of coffee much as I had a cup of coffee in the staff room at work. The Internet provides treats that are readily available when I feel low. At such times nothing beats a visit to Amazon.com or Barnesandnoble.com, a wander through their aisles, and maybe the purchase of a book online. Art galleries on the net are a means to pursue another interest.

Many polio survivors recognise that gaining pleasure from having interests is a survival strategy. In a survey of Australian polio survivors6 I asked, "What advice would you give to someone who developed post-polio symptoms?" The fifth most common recommendation was "Develop new interests" and "Maintain those interests that you can." The most frequent advice was, "Talk with other post-polio survivors" or "Join a support group." When I attended GINI's Sixth International Post-Polio and Independent Living Conference in 1994, I remember initially feeling confused because I felt so comfortable and relaxed. Then I realised that it was because everyone had had polio, so the "disability factor'" that must be dealt with in other social encounters did not exist.

One of my new pleasures, my commonplace books, began about seven years ago, almost by accident. One day I was given an art diary that seemed too beautiful to be used for scribbles about my daily appointments. Then I realised it was just the place for the quotations that I like to keep. My books contain extracts from articles, poetry, letters from polio mailing lists, photographs of special happenings (my recently built wheelchair-accessible courtyard garden that substitutes for the large garden I can no longer tend, my baby granddaughter, Marilla), cards from friends that were particularly moving, advertisements for a film or art exhibition that I enjoyed, and a few cartoons. The contents consist of writings that "speak to my condition."

Pleasures can slip by without our extracting much of their joy. An exercise entitled, "First the good news; then stop!," is surprisingly effective in counterbalancing a focus on the negatives in our lives. At the end of each day, I review the day's happenings and single out those personal activities that were enjoyable. Recalling a phone call from a friend and the enjoyment of reading a thriller reminds me that life can still be good.

How does pleasure affect our bodies? According to neuroscientist Candace Pert, "Our new understanding of neuropeptides and receptors has enabled us to see more of what is going on in conditions of stress. When stress prevents the molecules of emotion from flowing freely where needed, the largely autonomic processes that are regulated by peptide flow, such as breathing, blood flow, immunity, digestion, and elimination collapse down to a few simple feedback loops and upset the normal healing response." Experiencing pleasure or "having fun is the cheapest, easiest and most effective way I know to instantly reduce stress and rejuvenate mind, body and spirit - it gets our emotions flowing and our emotions are what connect us, give us a sense of unity, a feeling that we are part of something greater than our small and separate egos," says Pert7.

I open my commonplace book and Nancy Mairs8 tells me of her visit to Knole, an English stately home with 365 rooms. "Only the oak-paneled Great Hall can be reached by wheelchair. I can huddle in it grieving over the rare and fabulous silver furniture the others will see upstairs in the King's room without me. Or I can contemplate the ancestral portraits all around me, the elaborately ornamental oak screen at one end, and, when I've looked deeply enough, wheel out in the rare bit of English sun, dreaming that Vita Sackville-West and Virginia Woolf once walked by this very spot, heads together, arms entwined, their laughter fluttering through the gate and into the deer park beyond. Only one of the options will give me joy. I choose joy."

My pleasures may not please you, but I encourage you to explore the treats and small adventures lurking around corners in every day.

References

1. Bruno, R.L., Frick, N., & Cohen, J. (1991). Polioencephalitis, stress and the etiology of post-polio sequelae. Orthopedics, 14, 1269-1276.

2. Stein, K. (1996). Chronic illness and shame. In Lee, R.G., & Wheeler, G. (Eds.), The voice of shame: Silence and connection in psychotherapy. San Francisco, CA: Jossey-Bass.

3. Bruno, R.L., & Frick, N.M. (1991). The psychology of polio as a prelude to post-polio sequelae: Behavior modification and psychotherapy. Orthopedics, 14, 1185-1193.

4. Bradburn, N.M. (1969). The structure of psychological well-being. Chicago, IL: Adline.

5. Olkin, R. (1999). What psychotherapists need to know about disability. New York, NY: Guilford Press.

6. Westbrook, M.T. (1993). A survey of post-poliomyelitis sequelae: Manifestations, effects on people's lives and responses to treatment. Australian Journal of Physiotherapy, 37, 89-104.

7. Pert, C.B. (1997). Molecules of emotion. New York, NY: Scribner.

8. Mairs, N. (1996). Waist-high in the world: A life among the nondisabled. Boston, MA: Beacon Press.

Back to contents of this issue of Post-Polio Health

Past Issues, Listed by Topic
Past Issues, Listed by Volume and Date

Back to top