FLORIDA EAST COAST POST-POLIO SUPPORT GROUP

OUR DECEMBER CONFERENCE

Well, our second conference is over. We had attendees from 16 states, including Florida, and Wales and England. You can say that we held an “International Conference.”

Our speakers had excellent presentations. We had many compli-ments on the way the Conference was organized. As many of the attendees left, we were asked “When is the next one – let me know as I want to attend.” They were told that no more were planned at this time – but, if someone would like to sponsor us we would be delighted to do another one.

We’d like to thank Beverly Rolfe, Barbara Holt, Ann and Joe Roche, Linda and Larry Hanna (from my old Long Island Support Group), my sister-in-law Frances, my friend Zeena Hogsbro, for helping out at the Registration Table both Friday evening and Saturday morning. A great big THANKS to Bob Barry for once again doing the introductions and adlibbing when a light note was needed. And most of all to my dear friend Marge Torre, our Conference Coordinator.

There are some hand-outs left that I’ll bring to the January meeting.

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NEW MEETING SCHEDULE

At our November meeting a vote was taken and approved that we would change our meeting schedule. Meetings will take place five times a year – the months that our newsletter comes out – January, March, May, September and November. They will still be the third Sunday of the month and will still be held at the Atlantic Medical Center, 400 N Clyde Morris Blvd in Daytona Beach.

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JANUARY MEETING

As we didn’t have our Holiday Party last month because of the Conference, it was decided to have a New Year Holiday Luncheon --- so, we will meet at our usual Red Lobster -- the one on Intl Speedway Blvd -- at 12:00 to 3:00 PM on Sunday, January 21, 2001. The reservation form can be found at the end of the newsletter. Please have it back to me no later than January 15th.

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The following article was one of the hand-outs at our Conference. It was presented by Dr. Frederick Maynard.

LIFE-COURSE PERSPECTIVE

The life-course framework for studying disability emphasizes the importance of developmental stages and tasks within an historical and medical context. It finds that decisions about current disability-related issues are influenced by broader concerns about identity and the fulfillment of personal and cultural expectations (Scheer & Luborsky, 1991). Early life experiences with disability are often found to still be important in later life.

The life-course perspective on the late effects of polio considers it a secondary condition for which most polio survivors are “at risk” as they grow older. The new problems with mobility, including fatigue, pain, increased weak-ness, and falling, are considered to be triggered by the onset of the other medical conditions (see CO-MORBID-ITIES) such as obesity, arthritis, depression, heart disease, diabetes, injuries (see TRAUMA), stress, etc. How polio survivors respond, psycho-logically, behaviorally, and medically, to the onset of these other conditions will determine the course of possible functional decline during the rest of their lives.

Approaching the new medical problems of polio survivors using the traditional medical disease/illness perspective promotes fear due to unknown etiology and course, expectations of cure, anger, hopelessness, dependency, and multiple expensive evalua-tions. A life-course perspective pro-motes self-awareness, emotional growth and information-seeking. It advocates lifestyle change and health promotion to forestall or prevent future problems.

Reference

Scheer, J. & Luborsky, M.L. (1991). The cultural context of polio biographies.

Orthopedics, 14(11), 1173-1181.

From: Maynard, Frederick. (1999) Life-Course Perspective. In, F.M. Maynard & J.L. Headley (Eds.), Handbook on the Late Effects of Poliomyelitis for Physicians and Survivors, Revised Edition. St. Louis: Gazette International Networking Institute

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MANAGING THE LATE EFFECTS OF POLIO

FROM A LIFE-COURSE PERSPECTIVE

By Frederick M. Maynard

During the past decade many investigations have been conducted concerning the etiology of post-polio syndrome (PPS). The hypothesis pro-posed by Wiechers and Hubbell¹that post-polio people were having a degenerative fragmentation of their giant motor units as a basis for progressive muscle weakness appears now to be substantiated by many electro-physiological and pathological studies. Although several recent investigations have explored possible mechanisms that initiate motor unit deterioration, most notably immunological and hormonal dysfunction, results have been inconclusive and no effective cure for PPS has been found. Therefore, clinicians must focus on effective management.

This paper reviews the implications of recent research investigations for the management of patients with PPS. It proposes that current knowledge supports the view that PPS is a secondary condition frequently occurring during the life course of people with residual motor impairment from paralytic poliomyelitis and does not support the view that PPS is a distinct pathological process which should be labeled a disease or illness.

The Institute of Medicine recently proposed a model for understanding secondary disability development (Fig. 1).² In this model a secondary condition is defined as any new condition that develops in the life course of a person with a primary disabling condition. Life-style/behavioral and biological risk factors interact with the primary disability to influence the process of further disablement from the secondary condition. New pathologies may progress to greater impairment, more functional limitation or additional disability. The process of secondary disablement then interacts with quality of life. The life-course paradigm for understanding secondary disablement emphasizes developmental and aging processes that can be expected during a person’s life to increase chronic impairment and evolve into more functional limitation, thus requiring frequent readaptation to avoid additional disability.³

DIAGNOSTIC AND

ETIOLOGICAL CONSIDERATIONS

If the life-course model of secondary disablement is applied to people with a past history of polio. PPS is a secondary condition that post-polio people are at risk of developing. Inasmuch as the diagnostic criteria for PPS are inherently subjective symptoms (pain, greater weakness, fatigue), PPS cannot be defined objectively, and individualized criteria must be used. A more quantifiable criterion for diagnosing PPS is the presence of a new, or greater degree of, functional limitation resulting from the level of symptoms that a person is experiencing. This definition of PPS permits a clinician to consider diagnosis and management of a person with a past history of polio holistically because many new health problems may occur during the life of a post-polio person that affect the neuromusculoskeletal systems and functional abilities. Conditions that are “unrelated. as well as “related,” to previous paralytic polio residuals affect function, and the consideration of what is “related” implies a subjective judgment about a causal relationship. The term “late effects of polio” may be preferable to PPS for describing specific new health conditions in which a causal relationship is likely (e.g., obstructive sleep apnea in a person who had bulbar polio and has pharyngeal muscle weakness; degenerative arthritis in a person who walked many years with a weak quadriceps muscle). Alternatively, PPS can be used when a causal relationship between current symptoms and chronic post-polio impairments is unclear, although a new functional limitation or disability has developed in association with the stereotypical symptoms of the syndrome.

It has been suggested that the life course of people with a past history of paralytic polio often includes a slow decline in muscle strength that may become sufficient to affect everyday functional activities. One long-term follow-up study documented a progressive decline in strength among persons with post-polio, as measured by serial manual muscle test scores.⁴ Although this finding has not been substantiated with serial quantitative measurements of muscle strength over one or two years, declining strength is widely reported subjectively by polio survivors.⁵ It has also been suggested that slow decline of strength may occur during the life course of muscles with chronic partial denervation and reinnervation from other conditions than polio, for example, partially innervated/denervated muscles at the zone of partial preservation after spinal cord injury, particularly when these muscles are used repetitively at near maximal capacity during daily activities.⁶ This phenomenon of slowly increasing weak-ness and fatigue may represent accelerated aging of giant neuropathic motor units and becomes clinically relevant when a functional limitation results at the point when strength is insufficient to perform a customary or important daily activity. Cashman has characterized new post-polio weakness as a syndrome of “delayed failure of reinnervation”⁷ Therefore any new condition affecting a person’s general health will steepen the slope of age-related decline of muscle strength during the life-course of a post-polio person. This view is compatible with the clinical onset of PPS after the development of non-polio-related (co-morbid) medical conditions, including severe injuries. Although PPS then results from disuse atrophy, the weakness never is completely reversed because of the reduced capacity in the later life course of persons with post-polio to again reinnervate denervated muscle fibers and/or hypertrophy sarco-meres to preinjury levels.

Several findings from an in-depth study of 120 polio survivors, with and without new symptoms and with a spectrum of residual weakness and locomotor severity, support this view of PPS.⁸ Significant correlations were found between new functional limitations and the following individual characteristics: (1) diagnosis of non-polio-related co-morbid conditions, (2) reduced cardiovascular fitness, (3) obesity, and (4) elevated cholesterol ratio.⁹ Musculoskeletal problems of the upper and lower limbs were also highly prevalent (Table 1), and many were significantly correlated with the presence of new functional limitations

PSYCHOLOGICAL CONSIDERATIONS

Beyond discussions over accuracy of terminology, there are other important reasons to adopt a life-course paradigm for evaluating PPS symptoms rather than a traditional medical paradigm. In the traditional medical paradigm a physician views new symptoms as resulting from a disease and a possible cure is implied. However, based on our current understanding of the pathophysiology of post-polio motor units, a real cure seems unlikely and the goal of medical care is to minimize and control decline of strength over the life course. In my experience when symptoms are cured, it usually results from treatment of co-morbid conditions or specific secondary conditions, for example, sleep apnea. If a physician finds no specific secondary condition and communicates uncertainty over the diagnosis for symptoms, patients may become fearful. If it is suggested that symptoms have a psychoneurotic basis, patients may become angry. If symptoms are minimized by attributing them to “getting old,” depression or anger can result. If a cure for pathology is sought but not found, withdrawal and depression can be expected. If physicians communicate helplessness, patients will feel hopeless. People can feel victimized by the disease and the health care system that fails them.

In the life-course paradigm for evaluating secondary disability the physician considers the development of PPS as a not-unexpected event in the life of a person with a history of polio. Physicians are reminded by this view to examine first a person’s general health and well-being and to carefully consider the impact of co-morbid conditions that may have developed or need to be diagnosed. An attitude of health pro-motion and risk reduction for all health problems is encouraged in the patient. If current weakness has created in-creased functional limitation or disability, then attributing it to the expected life course and aging of a person with chronic motor impairment will promote an attitude of knowledge-seeking and coping in the patient – just as able-bodied people want to learn ore about normal aging. Post-polio patients are asked to examine their life-styles closely and to reconsider their expectations for activity performance after an objective analysis of their muscle strength and endurance. Life-style modifications, including activity pacing, planned exercise regimes, dietary change, and stress reduction are a few of the behaviors that must be nurtured.

Recent research in psychology suggests that among people with spinal cord injury a person’s attribution for the cause of their injury was highly predictive of successful coping.¹⁰ In a similar way, attribution theory may influence the way a person with post-polio copes with new disability. For example, a person with long-standing moderate leg weakness from paralytic polio who has walked with two crutches for 30 years develops painful arthritis or tendonitis of the shoulders which limits walking and leads to greater arm weakness and more shoulder strain. These strain-induced shoulder problems could be considered to not unexpectedly result from prolonged, high-frequency heavy loading of tissues which show normative age-related reduced capacity for heavy loading without strain. Alternatively, one could attribute these shoulder strain problems to the onset of progressive weakening of muscles that is unique to people with a previous history of polio, or PPS. In the first view, symptoms are considered to result from age-related normative changes in organs (shoulders) that can be expected to have characteristic manifestations (degenerative arthritis/ tendonitis) and functional implications (greater difficulty walking) among people with chronic motor impairments (walkers with crutches). In other words, problems are attributed to not unexpected life-course changes. In the second explanation for the cause of shoulder problems, symptoms are attributed to condition-specific (post-polio) rates and types of changes in specific organ systems (nerve and muscle) that result in new functional limitations (PPS). The latter explanation can lead to a “self-fulfilling prophesy,” or nocebo effect, that predicts worsening because no attribution is made to a person’s present or past activity that is under their own control. Psychological distress may be greater with the latter explanation than the former because it implies that PPS is a new disease with an unpredictable likelihood of rapid progression. Some people, particularly those who are relatively young (e.g., in their early forties) may be more distressed by an explanation that attributes early aging, rather than a new disease, because the notion of growing old threatens their self-image of vitality and implies acquiring other disability characteristics of older people. For other people, attributing the problem to overuse strain may evoke guilt because of their own role in causing it or anger at health professionals who did not warn them about its future likelihood. Although the true cause of these problems may include both explanations, what may be most important for successful coping is an individual’s attribution and/or understanding of the cause. The role of the physician in helping patients to understand their condition may strongly influence their attribution and sub-sequent coping. This role can be very challenging if done in a way that promotes successful coping among post-polio patients.

In a recent study that compared distressed/depressed to nondistressed/ nondepressed polio survivors, the former were found more likely to be living alone, to be experiencing new health problems, to seek professional help, to view their health as poor, to report greater pain, to be less satisfied with their occupational status and life in general, and to exhibit poorer coping skills in relation to their disability. Coping factors associated with nondistressed/nondepressed subjects included positive self-acceptance, information seeking/sharing about disability and social activism.¹¹ Therefore, conceptualization of PPS as an event in the life course of people with chronic post-polio motor impairments, rather than as an acute illness, may help promote successful coping. Writing in a Hastings Center report on ethical challenges in chronic illness, Jennings states that within the acute illness model, illness is viewed as an “alien threat to the self and the goal is to defend and restore the self by curing or compensating for the illness.”¹² According to the acute illness model, the provider and patient enter into a contract wherein the goal is to defeat the enemy, that is, the illness. Restoration of functioning to a pre-morbid status is the aim, via destruction of the enemy within, to eventuate a cure. Inherent within the acute medical model is the traditional doctor-patient relationship, wherein the role of the patient is typically passive in nature. Care for people with chronic disabling conditions should be directed toward the minimization of the impact of any further disablement. Diplomacy becomes a better metaphor than warfare for appropriate medical care. If successful living with a chronic disability is a process of negotiation, the role of medicine is to facilitate that process.

CLINICAL EVALUATION

AND MANAGEMENT

What then should a physician’s approach be in treating patients with post-polio syndrome? It should begin comprehensive and detailed history that allows them to gain a life-course perspective on the person’s functional abilities and activity patterns and on the severity of any residual polio impairments and functional limitations. This will enable a practitioner to consider all current symptoms in the appropriate context and to evaluate them in relation to current muscle strength, joint deformities, functional abilities, and other general health indicators. On the basis of the initial comprehensive assessment a further in-depth review of systems may be needed to consider the impact of all other health issues on musculoskeletal functioning and PPS symptomatology. The practitioner must adopt a primary-care-physician approach to the health of the person with post-polio and decide if a diagnostic workup is needed to identify other conditions that may be treatable and that may impact on the general health and functional capacity of the person. Some of the most common general health issues that must be considered include cardiopulmonary diseases that affect vitality and endurance; endocrine diseases such as hypothyroidism and diabetes; immunological abnormalities including allergic disorders and states of chronic stress; nocturnal hyperventilation and sleep apnea; dysphagia; neuromusculoskeletal problems including spinal disorders associated with spinal cord or nerve root impingement; peripheral nerve compression syndromes; myofascial pain syndromes; arthritis; and psycho-emotional disorders such as depression and post-traumatic stress syndromes.

After all secondary conditions have been fully evaluated and optimally treated or managed, persons with post-polio must build a partnership with their physician based on effective communication and trust. Patients should receive all rehabilitative therapies that can assist them to improve functional limitations, reestablish mental and physical equilibrium in their lives, and adopt an attitude of negotiation, with any residual new (secondary) disability. They should be informed about and offered adjunctive treatment options, such as exercise, drugs for fatigue or new assistive devices. Consultations with occupational therapists, social workers or psychologists, as well as participation in support groups, can be of additional assistance in considering beneficial changes in life-style.

Lastly, the physician needs to facilitate the patient’s adoption of a health promotion and risk prevention attitude toward their health and life-style. After reviewing their vulnerability to progressive functional loss over the life course, patients should be encouraged to participate in wellness programs that can provide them with information and guide them in training behavioral changes that focus on nutrition, exercise, functional activity, posture, stress reduction, and coping. In summary, new scientific knowledge and advances about the late effects of polio will be used optimally in the lives of persons with post-polio only if applied with advanced skill in the art of medicine.

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REFERENCES

1. Wiechers, D.O. & S. Hubbell. 1981. Late changes in the motor unit after acute poliomyelitis. Muscle & Nerve 4: 524-528

2. Pope, A.M. & A.R. Tarlov, Eds. 1991. Disability in America – Toward a National Agenda for Prevention. National Academy Press, Washington, DC.

3. Sheer, J. & M.L. Lubovsky. 1991. The cultural context of polio biographies. Orthopedics 14: 1173-1181.

4. Dalakas, M.C., G. Elder, M. Hallett et al. 1986. A long-term follow-up of patients with post-poliomyelitis neuromuscular symptoms. N. Engl, J. Med. 314: 959-963.

5. Agre, J.C., A.A. Rodriquez & J.A> Tafel. 1991. Late effects of polio: Critical review of the literature on neuromuscular function. Arch. Phys. Med. Rehabil. 72: 923-931

6. Maynard, F.M. 1993. Changing care needs. In Aging with Spinal Cord Injury. G. Whiteneck et al., Demos, New York.

7. Cashman, N.R., R. Maselli, R.L. Wollmann et al. 1987. Late denervation in patients with antecedent paralytic poliomyelitis. N. Engel. J. Med. 317: 7-12.

8. Maynard, F.M., M. Julius, N.L. Kirsch et al. 1991. The late effects of polio: A model for identification and assessment of preventable disabilities. Final Report to Centers for Disease Control (#U59/CCU5:0338-03). Department of Physical Medicine and Rehabilitation, University of Michigan, Ann Arbor, MI.

9. Maynard, F.M., M. Forchheimer, S. Roller et al. 1991. Secondary conditions associated with declining functional abilities among polio survivors. Arch. Phys. Med. Rehabil. 72: 795.

10. Silber, R.L. & C.B. Wortman. 1980. Coping with undesirable life events. In Hyuman Helplessness: Theory and Applications. J. Garber & M.E.P. Seligman. Eds.: 279-340. Academic Press, New York.

11. Tate, D., N. Kirsch, F. Maynard, C. Peterson, M. Forchheimer, A. Roller & N. Hansen. 1994. Coping with the late effects: Differences between depressed and non-depressed polio survivors. Am. J. Phys. Med. Rehabil. 73(1): 27-35.

12. Jennings, F., D. Callahan & A.L. Caplan. 1988. Ethical challenges of chronic illness. Hastings Cent. Rep. Spec. Suppl. Feb/March.

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MY WANING MEMORY

Just a line to say I’m living,

That I’m not among the dead,

Yet I’m getting quite forgetful

And more mixed up in the head.

There are times that I can’t remember,

Standing at the foot of the stairs,

If I must go up for something

Or I’ve just come down from there.

With the Frigidaire before me

My poor mind is full of doubt.

Have I just put food away, or

Have I come to take some out?

There are times when it’s still dark

When I stand beside my bed

I can’t tell if I’m retiring,

Or getting up instead.

If it’s not my time to write you,

There’s no need to get upset.

When you’re my age these things happen.

It’s so easy to forget.

But with mail time fast approaching

I will try to make it clear

In this letter I am mailing

That I love you, precious dear.

Yet the mailbox stands before me,

As my face turns ruby red,

For I failed to mail your letter.

I just opened it instead.

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Editor’s Note:- In going through some papers I came across this. Don’t remember where or who sent it to me, but in reading it I found it to be quite true. How many times a day do we stop and say, “Now, what was I doing – was I going or coming…” Sometimes we blame it on “senior moments” and sometimes we, as PPSers, we blame it on “Post-Polio Syndrome -- short term memory”.

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DUES FOR 2001:- Please take a look at your mailing label - on it you’ll see the month and year we received your 2000 dues, i.e., 01/2000 means it was received in January 2000, so your 2001 dues is due in January 2001. If your mailing label has the year first and then the month, i.e., 2000/01 it means that you indicated to us in January 2000 that you wanted to receive the newsletter but was not sending dues. That’s OK as we still believe that anyone who wants information should receive it – but we do need you to return the tear sheet with either the “Dues” box checked or the “Keep me on the Mailing List” box checked.

Your dues covers the supplies we need to send out the information packets to all inquiring about Post-Polio Syndrome, any other correspondence we do, and postage for publicity and for the out-of-country (35) newsletters that we send out. We’re fortunate in that the “Free Matter for the Blind and Physically Handicapped” status takes care of the postage for the over 500 newsletters sent out within the United States. We network with approximately 60 other support groups throughout the United States, Canada, Australia and New Zealand – some 40 of these reciprocate by sending us their newsletters. We receive as many dues checks from our out-of-state members as we do from our Florida members. So, please check your mailing label and return the tear sheet if your date is due. We really need your support now more than ever. Just to keep you advised, in addition to the previously mentioned countries, our newsletter goes to Austria, Brazil, England, France, Germany, Israel, Lebanon, Panama, Portugal, Sweden, Taiwan and Wales.

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WHEN YOU MOVE PLEASE be sure to send us your new address. Sometimes the post-office will return the newsletter to us with a “forwarding period expired” notice on the front with your new address but most of the time they are just returned to us with “address unknown” on it. SO, if you want to continue receiving the newsletter it is UP TO YOU to make sure we have your new address.

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Reprinted from Kansas Connection, Volume 7, Issue 10, November 2000

FROM MY VANTAGE POINT

BY HELEN ROBSON, PRESIDENT

HOW FAST TIME PASSES --

AS ON OUR WAY WE GO

In the past year, no doubt, each of us has experienced good and bad times, joys and sorrows, gains and losses and some changes. Many of us are still living in our own homes or perhaps have downsized and moved into smaller quarters. Where there is life there is hope!

As members of support groups we have a constant challenge before us to keep focused on others and how much we mean to each other. We need to let it be known by a phone call, card or by spending time with each other. We can help lift a burden or care by lending a shoulder or an ear and by remembering each other in our prayers. An unknown author says it so well in a poem entitled “Sharing.” God bless you one and all.

There isn’t much that I can do, but I can share my bread with you, and sometimes share a sorrow too ~ As on our way we go.

There isn’t much that I can do, but I can sit an hour with you, and I can share a joke with you, and sometimes share reverses too ~ As on our way we go.

There isn’t much that I can do, but I can share my flowers with you, and I can share my books, and sometimes share your burdens too ~ As on our way we go.

There isn’t much that I can do, but I can share my songs with you, and I can share my mirth with you, and sometimes come and laugh with you ~ As on our way we go.

There isn’t much that I can do, but I can share my hopes with you, and I can share my fears with you, and sometimes shed some tears with you ~ As on our way we go.

There isn’t much that I can do, but I can share my friends with you, and I can share my life with you, and oftentimes share a prayer with you ~ As on our way we go.

Editor’s Note:- As this is the beginning of a new year, I felt this a most appropriate “poem” to put into the newsletter. Let’s make one of our “New Year’s Resolutions” to “SHARE” with others ~ As on our way we go.” Thank you Helen for this beautiful poem.

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Our sincere condolences to the families of Jack Turvey who passed away in May,

Bill Ranshous who passed away in October,

and John Drogan, who passed away in December.

May their families only know of happiness from now on.

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Reprinted from Kansas Connection, Volume 7, Issue 10, November 2000

BATTLING STOPS SO POLIO

CAN BE FOUGHT

Kabul, Afghanistan – The fighting halted in Afghanistan recently to allow U.N. workers to begin immunizing millions of children against polio.

The ruling Taliban and their northern-based opposition agreed to cease-fires for several days so U.N. health workers could go door to door administering vaccine to infants and children under five.

The Taliban also allowed U.N. workers to cross its territory to take polio vaccine to opposition-controlled areas in the north.

Editor’s Note:- So, immunizations go on in parts of Europe, the Middle East, Africa and India -- It is our sincere wish for the New Year that ALL children, wherever located, be immunized not only against POLIO but against every disease there is a vaccine. After all, an ounce of prevention is worth more than a pound of cure.

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Reprinted from Johns Hopkins Medical Letter, January 2001, Health After 50

COPING WITH THE LATE-LIFE

COMPLICATIONS OF POLIO

Although an aggressive vaccination program that began in the 1950s has eradicated polio in the United States, a more recently recognized complication known as post-polio syndrome (PPS) has unexpectedly thrust the crippling, sometimes fatal, viral infection back into the spotlight. Most people born before 1950 can recall the devastating polio epidemics that swept the nation beginning in 1916 and ending in 1955. At the height of the epidemics, as many as 60,000 Americans contracted polio in a single year and 3,000 died. In those who recovered, some degree of muscle impairment often remained.

Metal braces, iron lungs (machines to aid breathing), swimming pool closures, and canceled public events are hallmarks that still define the era. Today, there are more than 640,000 polio survivors in the United States. Virtually all are at risk for PPS and up to half will eventually develop it.

Although there is no cure, lifestyle measures can minimize symptoms and may reduce the likelihood that they will occur.

A second wave of nerve damage

Polio is caused by a virus that attacks the anterior horn cells, nerve cells in the spinal cord that communicate with muscle cells. When this interaction is impaired, muscles can’t function properly and paralysis may result. In some cases, people lose the ability to move an arm or a leg. In others, impairment of muscles around the chest and diaphragm may interfere with breathing. Although the virus can destroy countless nerve cells, some manage to survive and eventually establish new links with muscle cells. This explains why many survivors have been able to regain at least some use of affected muscles.

PPS is a slowly progressive, degenerative disorder that usually appears 10 to 50 years after the initial infection. The condition is rarely fatal, except in those with severe breathing problems, and the severity of PPS symptoms often correlates with the severity of the original polio symptoms. Sufferers typically experience generalized fatigue, muscle and joint pain, muscle weakness, breathing difficulties, dysphagia (problems with swallowing), and depression.

Severe breathing problems are most likely to occur in those who needed an iron lung during their initial episode. Restrictive lung disease, a condition in which the lungs and ribs do not expand normally owing to weakness in the diaphragm and chest muscles, is one of the more common pulmonary manifestations of PPS. Sleep apnea, temporary breathing interruptions that occur during sleep, is another. If dysphagia is a problem, the possibility of choking is a serious concern. People with dysphagia often feel as if food is stuck in the throat, and sufferers may cough when trying to eat.

Living with PPS

Diagnosing PPS is no easy task, as it can be difficult to distinguish between preexisting and new neuromuscular deficits. Furthermore, only in recent years, as more polio survivors have begun to develop PPS, has the medical community learned to recognize the condition. Diagnosis is based on ruling out other medical problems (such as Parkinson’s disease, arthritis, chronic fatigue syndrome, and multiple sclerosis) that might be causing symptoms. Strength tests, brain imaging, muscle biopsies, and spinal fluid analysis are among the tools used. The initial evaluation is best done by a neurologist. Long-term management can be handled by a general practitioner, a physical therapist, or a pulmonologist if breathing problems are involved.

Treatment involves a variety of measures aimed at relieving discomfort and maintaining strength:

· Exercise. When tailored to each patient’s individual abilities, a carefully supervised exercise program can improve strength, relieve pain, and minimize fatigue. The chosen activities may be as mild as gentle stretching and yoga or as intense as aerobics and weight-training. Too much physical activity, however, could induce further muscle weakness. Minor fatigue and soreness are normal after a workout, but tiredness and pain persisting beyond an hour indicate that muscles have been overused. General fatigue can be minimized by planning activities around energy highs and lows, and by using assistive devices (such as walkers, canes, wheelchairs, grab bars, and elevated seats).

· Medications. While over-the-counter medications may relieve occasional muscle soreness, prescription medications (usually a muscle relaxant or a tricyclic antidepressant) are required for persistent discomfort. A medication called pyridostigmine (Mestinon) may help reduce muscle fatigue and weakness.

· Dietary changes. Dysphagia can be minimized by choosing soft, easy-to-swallow foods; eating smaller, more frequent meals; avoiding eating when tired; and making an effort not to swallow with the head tilted back or while talking.

In addition, breathing problems can be addressed with supplementary oxygen, and some PPS patients report that transcutaneous electrical nerve stimulation (TENS) is an effective pain reliever. Experimental therapies are also being evaluated. Among the more promising are body chemicals known as neurotropic factors, which nourish and may possibly even regenerate nerve cells.

Editor’s Note:- This article was faxed over to me by our members, Frank and Maggie DeLisle. Thank you.

If you see an article that you think is something we should all know about, please either mail it to me or fax it to me at 904-671-2838.

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Reprinted from Southern Colorado Polio News, December 2000

TIPS FOR BETTER SLEEP

· Do not eat, read, watch television, or work while in bed.

· Go to bed only when sleepy; if you are still awake after 20-30 minutes, get out of bed until sleepy.

· Maintain a regular wake-up time, even on weekends.

· Sleep the amount that allows you to feel rested and alert during the day. Oversleeping disturbs sleep.

· Daily exercise can reduce stress and help sleep. Avoid strenuous exercise that increases heart rate and temperature before sleep.

· Darken windows, or use an eye mask to reduce outside lights. This may be helpful if you sleep during the day.

· Loud noises disturb sleep, so try using earplugs.

· Drown out outside noise by using a fan, or set a radio or TV to static, in between stations, and adjust volume to mask other noise. It may take several days to get used to this noise.

· Turn the clock away from you. Don’t watch it!

· Avoid large meals near bedtime; however a light snack of dairy foods such as milk, cheese, or yogurt may help initiate sleep.

Editor’s Note:- Maybe I should try some of these “Tips” – my TV is on all night -- my windows aren’t darkened as I light to see the light coming in in the morning -- I usually have a cup of tea before bed -- but otherwise… good advice.

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Reprinted from Bat Mitzvah Book of Jodi Gayle Hains, June 1993 and our newsletter of March 1994

I’M SPECIAL

I’m Special…

In all the world there’s nobody like me. Nobody has my smile. Nobody has my eyes, nose, hair or voice.

I’m Special…

No one laughs like me or cries like me. No one sees things just as I do. No one reacts just as I would react.

I’m Special…

I’m the only one in all creation who has my set of abilities. My unique combination of gifts, talents, and abilities are an original symphony.

I’m Special…

I’m rare. And in all rarity there is great value. I need not imitate others. I will accept -- yes, celebrate -- my differences.

I’m Special…

And I’m beginning to see that God made me for a very special purpose. He has a job for me that no one else can do as well as I do. Out of all the applicants only one is qualified. That one is me.

Because I’m Special!!!!

FLORIDA EAST COAST POST-POLIO SUPPORT GROUP - Vol. 8 #4

12 Eclipse Trail / Ormond Beach, FL 32174 / 904 676-2435

E-Mail:- bgold@iag.net - Web Site:- iag.net/~bgold/polio.htm

JANUARY / FEBRUARY 2001

TO ALL OUR FRIENDS --

A MOST HAPPY AND HEALTHY NEW YEAR 2001

A LOVE FILLED VALENTINE’S DAY

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