PSN Library Files

Dr Henry writes about Reductionism

Dr. Henry writes about Reductionism

Have you wondered how much more your life can be reduced by Post-Polio Syndrome (PPS) and yet, you could still retain some quality to your life? Have you wondered if PPS will likely shorten your life span? Have you wondered if PPS could progress to a state where you would be more dependent and require caretakers? Have you wondered if a progression in your PPS condition could result in alienation from family and friends and a more depressed life style? Have you wondered if some new medical finding or treatment might result in an effective treatment for us? Perhaps you have wondered and pondered all of these queries. I know I have.

The reality of diseases, accidents or violence, such as war, has been with us through the ages. Any of these adversities can reduce the quality of life abruptly or gradually. The lives of Chris Reeve and the Chinese gymnast Sang Lan were reduced in an instant by a cervical spinal cord injury. Numerous war veterans and civilian survivors of wars have experienced a reduced quality of life as a result of their experience. Many progressive diseases such as Alzheimer’s, Parkinson’s, Multiple Sclerosis, Amyotrophic Lateral Sclerosis, Muscular Dystrophy, numerous cancers, cardiovascular disease and on and on may reduce the quality of life. I believe that PPS belongs among this group as a condition that seems to be progressive and can reduce one’s life significantly.

PPS has affected us in a variety of ways much as the original polio illness did. This variety includes the new use of orthopedic aids such as braces, crutches, canes, and even scooters, electric wheel chairs, and transfer lifts. For some, ramps, elevated toilets, widened doors, and special vehicles have been required. Others spend a lot of time lying down. Some do not have the energy to concentrate, cook, clean, or even

to talk for long. Often pain, weakness, and fatigue are the causative factors in this life reduction. All of this says to me that PPS can be progressive and reduce one’s quality of life beyond the usual aging process.

In a decade’s time, I have gone from walking with a brace and climbing steps to most places I wanted to reach to a life of mostly resting, using a scooter to move from room to room, and becoming more dependent on a ventilator. My life has been markedly reduced. In addition, I have also experienced Post Polio brain fatigue, but fortunately I seem to have retained my intellectual function for which I am grateful. Has a reduced life style entered your life since your PPS began?

Does PPS shorten one’s life expectancy? To my knowledge, there is no objective evidence that PPS impacts on life span. There is little doubt that stress can cause us to be more vulnerable to other life threatening events. You are probably familiar with the studies on increased vulnerability of heart disease among so-called Type A personality types. PPS is a realistic physical and emotional stress for many of us. Making realistic life style changes to reduce stress would possibly increase our quality of life as well as prolong our life spans. Blood pressure often increases among PPSers. It is wise to have your blood pressure measured regularly and see your physician if there is evidence of hypertension. Taking measures

to reduce the risk of falling is an effective preventive action. We all know the dangers of a high cholesterol, high fat diet. Gaining weight as a result of being less active can increase the risk of adverse medical events. Being kind to ourselves is a simple goal.

There are some PPSers who already depend on family or hired personal attendants to assist them in maintaining their activities of daily living. Most of those folks do not make it to our meetings, but they are on our mailing list and many are also on the Internet. Any of us could be in this dependent state. There are even some PPSers who “recovered” from acute polio and “passed” for normal for many years and who now find themselves in a dependent state. The “passers” are having some of the most difficult adjustments because of their level of functional loss. All of us with PPS have felt some grief over our losses. Talking about our grief to someone such as family members, friends, our support group, or a professional does help.

There has been relatively little attention given to the impact of PPS on family members and friends. The survey that was done on our own group last year revealed that over half of the responders felt that their families reacted in various ways to their PPS progression. The range of reactions ran from family members being more helpful, being in denial themselves, perceiving the PPSer as a burden, and being alienating or rejecting. Some in our group have gone through divorce and the stress of divorce intensified their PPS symptoms. Because of the depressing nature of PPS, particularly in the early stages, there are some of us who emotionally withdrew and alienated ourselves from our family and friends. If we wall ourselves off from our loved ones, they will feel rejected and find it more difficult to respond to our needs. Continued meaningful communication among PPSers, their family, and friends is most helpful to all involved.

Is their any hope for a significant new treatment to arise? There is no way to know. There is much research directed toward neuromuscular diseases. An effective new treatment for some other progressive neurological disorder might also help us. Ideally, if some medication could improve motor neuron function or if the riddle of PPS total body and brain fatigue could be solved, there might be a more effective treatment in our lifetimes.

My previous words may sound depressing and reflect a poor prognosis for PPS. I have omitted the value of the human spirit. Most of us have relied on inner resources, dogged determination, some denial of our limitations, and the spirit of never ever giving up. I believe that same spirit will sustain us as long as we

are kind to ourselves. Before 1991, I felt that my life with polio was a solo experience. In the last seven years, I have met many polio survivors in our support group, over the telephone, and over the Internet. It is a comfort to know that many others have experienced the same polio pilgrimage. Perhaps you have heard the familiar words, “Blessed be the human spirit in which all things are possible.” I believe these words apply to us. There are also some familiar words written by the Prophet Isaiah that often speak to me and possibly you.

The Lord is the everlasting God;

He created all the world.

He never grows tired or weary.

No one understands his thoughts.

He strengthens those who are weak and tired.

Even those who are young grow weak;

Young people can fall exhausted.

But those who trust in the Lord for help

Will find their strength renewed.

They will rise on wings like eagles:

They will run and not grow weary;

They will walk and not grow weak.

Henry Holland, Richmond., Virginia, USA. Henry4FDR@aol.com

October 1998

Originally published in the Central Va PPS Support Group (PPSG)‘s newsletter, The Deja View, in 1998.

The Lincolnshire Post-Polio Network

Registered Charity No. 1064177

An Information Service for Polio Survivors and Medical Professionals

All enquiries, book requests, medical article requests, membership fees, items for newsletters and donations to

The Secretary, Lincolnshire Post-Polio Network

PO Box 954, Lincoln, Lincolnshire, LN5 5ER United Kingdom

Telephone: +44 (0)1522 888601

Facsimile: +44 (0)870 1600840

Email: info@lincolnshirepostpolio.org.uk

Web Site: www.lincolnshirepostpolio.org.uk

The Lincolnshire Post-Polio Network takes great care in the transcription of all information that appears at this site. However, we do not accept liability for any damage resulting directly or otherwise from any errors introduced in the transcription. Neither do we accept liability for any damage resulting directly or otherwise from the information available at this site. The opinions expressed in the documents available at this site are those of the individual authors and do not necessarily constitute endorsement or approval by the Lincolnshire Post-Polio Network.

© Copyright The Lincolnshire Post-Polio Network 1997 – 2010.

© Copyright Henry Holland 1997 1998 1999 2000.

Copyright is retained by The Lincolnshire Post-Polio Network and/or original author(s). Permission is granted to print copies of individual articles for personal use provided they are printed in their entirety. Links from other Internet WWW sites are welcome and encouraged. We only ask that you let us know so that we can in future notify you of critical changes. Reproduction and redistribution of any articles via any media, with the exception of the aforementioned, requires permission from The Lincolnshire Post-Polio Network and where applicable, the original author(s).

Document preparation: Chris Salter, Original Think-tank, Cornwall, United Kingdom.

Created: 24th October 1998

Last modification: 24th January 2010.

Dr Henry writes about Reductionism Read More »

Post-Polio and Intimacy

Linda Van Aken and Henry Holland MD

Studies for aging show that sex is still a very important part of life even as our endurance decreases and our libidos fade. Humans are very sensual animals and intimacy is often just as important to our emotional well being as all the other things we do to take care of our bodies. Dr. Richard Bruno, a neuro psychologist and Director of the Post-Polio Institute of the Englewood Hospital and Medical Center in Englewood, New Jersey, has written an article entitled “Sex and Polio Survivors.” Dr. Bruno writes “The first step to intimacy and sexuality is recognizing and dealing with the emotional reality of the original polio and any abuse you have experienced because of it. Next, you need to identify your own negative feelings about yourself and stop projecting them into the heads of potential friends and lovers.”

There is a lot of psychological substance to Dr. Bruno’s statement. “Recognizing and dealing with the emotional reality of the original polio” is a heavy assignment. For many of us, the memories of the original polio are stamped in our remote memory, but rarely truly shared in depth. Our denial has allowed us to guard against dealing with our deepest feelings connected to acute polio, but our denial has also helped us to overcome our respective obstacles in life and to get on with achieving goals and to function relatively normally. To let go of our defenses and deal with our original polio reality can provoke some anxiety, uncover some anger, and even result in feeling depressed. Support groups can certainly facilitate this process, especially in small group discussions. Some may require individual counseling to deal with these long submerged feelings. Others may never be able to deal with these feelings, but all of us should be able to treat ourselves in a more empathic and compassionate manner.

Dr Bruno also mentions above that polio survivors also need to deal with any “abuse you have experienced because of it” (polio). He mentions that “nearly one-third of the polio patients we treat have been physically or emotionally abused and 25% of the women have been sexually abused. Not surprisingly, those who have been abused are much less likely to risk intimacy or be interested in sex.” Individuals who have suffered abuse in childhood often have damaged self-esteems, repressed anger, and may distrust and experience estrangement in an intimate relationship. For children who had polio at a preschool age, any abuse that may have occurred as a result of polio may be repressed or pushed into the unconscious. The experience of PPS has stimulated some flashbacks and partial memory of these earlier experiences. Some are recalling the fear (anxiety/panic) associated with the separation from parents during isolation periods. Emotionally, psychological damage may have unintentionally resulted. To be able to experience intimacy in a relationship, resolving feelings connected to any abuse would serve the polio survivor well.

What does Dr. Bruno mean when he says, “You need to identify your own negative feelings about yourself and stop projecting them into the heads of potential friends and lovers?” This simply means that we should make a thorough self examination of what we do not like about ourselves, especially our polio or

PPS selves, and not take it out on our loved ones. Last fall’s survey of our own group revealed that 70.5% of us are married. Thus, for most of us, it is logical to assume that our spouse is the individual most likely to be the object of any blame or projected negative feelings. If this is happening in a marriage or any other intimate relationship, it will likely cause problems. Search within yourself and try to avoid this trend. PPS

can have a negative impact on a relationship and sometimes the negative input may originate from the subtle withdrawal of the more able bodied spouse. On the survey of our group, 51% reported that PPS was having some impact on the family system. Often, this impact was negative and could impede communication.

With the onset of Post-Polio Syndrome, many of us find that it is difficult to maintain a healthy sexual relationship with our partners. Let’s explore new ways to maintain an intimate relationship with another person. If you are married or have a significant partner, flirting and touching can still be very much a part of your daily life. Actual sexual encounters may need to be more structured. Due to reduced energy levels, it is often necessary to plan for an intimate encounter. Save your energy reserves and plan for a special time together.

Frequent kissing and hugging moments at various times throughout the day can be rewarding. It is rather like constant foreplay all day long. It is a perfect way to set the stage for a very romantic evening. Consider dressing with “intent.” For ladies, wear that lovely lingerie you save for special occasions. Everyone can take just a little extra time with their grooming so that they feel good about themselves. Wear soft comfortable fabrics. Soft woollies and silky satins are tempting to the touch. Being warm is often so important for those of us with PPS. So light a fire or turn on a heater in your bedroom to help keep the chill out of the room. Set the mood, light candles, and play soft music. Make each encounter the most romantic day possible.

All of us are familiar with the concept of pacing our energy throughout the day. This same approach may be helpful in our sexual activity. Those who have considerable motor weakness or fatigue as a result of PPS may find it more satisfying to allow the more able bodied sexual partner to be the more physically active participant. The proper use of lubricants and utilizing the most relaxing sexual positions usually will facilitate successful sexual pleasure. The satisfaction of an orgasm is not always necessary for successful intimacy. Stimulating touching, caressing, and massaging is often very soothing and gratifying. Even if you are single, there are ways to find comfort in your own sexual thoughts and fantasies.

If there are sexual performance problems, Viagra is not necessarily the solution for all men nor are female hormones for the women. Communication between spouses or lovers is often the most important factor in improving a sexual relationship. “Many factors can diminish sexual drive in PPS sufferers, but none is greater than an unwillingness to communicate” says Dr. Stephen Sloan, a psychotherapist and staff member at the Shepherd Center and Emory University Center for Rehab Medicine. “Sex is a challenging subject for many people, and perhaps especially those with a disability. Everything from body image to medication can interfere with sexual performance and confidence”, Sloan said, “Talking about these things is key.” Sloan added, “Do not get hung up on traditional methods of arousal and intercourse, there are no rules. And don’t forget humor. To have good sex, you have to be able to laugh.”

Sexual arousal also has medical value. Arousal can help to produce endorphins in the brain and endorphins help pain. Dr. Brigitta Jann, the medical director for the Emory University Center for Rehab has written that sex helps build cardiovascular health. Thus, sexual arousal is one way to improve cardiac function when jogging, swimming, and other methods of physical exercise are not possible options for many folks with PPS.

Does it matter how often you enjoy sexual encounters? No! It only matters that you still find ways and the

time to explore your sensual self.

Henry Holland, Richmond., Virginia, USA. Henry4FDR@aol.com

October 1998

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Bollenbach Polio Biology 1

Polio Biology I

An Introduction to the Virus

Eddie Bollenbach

A Lincolnshire Post-Polio Library Publication

22nd August 1998

It may surprise you to know that we don’t understand where viruses originally came from. Yet for every life form on the planet there is some virus somewhere that can penetrate and infect its cells. All viruses infect by following a similar process: they attach to a cell, penetrate it, reproduce, and propagate. The propagation step often involves bursting and killing the infected cell and the release of hundreds of new viruses. Polio does this to the cells it infects.

No virus will naturally infect a cell unless there is a receptor on the surface of the cell that the virus can “recognize”. The receptor combines with the virus by attaching to it. This attachment is analogous to a hand slipping into a tight glove. Cells without the proper receptor are not naturally infected. Hence, polio only infects humans and closely related primates, and, only infects cells within those species that have receptors for polio virus. In humans, polio receptors can be found in the upper and lower throat, gut, brain, and on the motor nerve cells (polios-denoting gray matter) of the spinal cord.

Before the advent of the trivalent polio vaccines, polio virus was abundant within our environment. It passed from person to person by ingestion of extremely small bits of fecal material. This could happen through swimming, through food handlers who failed to wash hands properly, or through poor general

sanitation. Polio virus is one of the smallest viruses and can be readily transmitted, in large numbers, easily. If the number of virus particles a person ingests is large enough (infectious dose), the virus strain infective enough (virulent), and the resistance of the person low enough (susceptible), the virus attaches to receptors and enters cells in the gut faster than the immune system can clear the virus from the body. Soon, as propagation proceeds, great numbers of virus particles are released into the blood. When virus is in the blood, the condition is called viremia. Eventually viruses find their way to the parts of the brain and spinal cord which have receptors for them. These cells then, unwittingly, take virus in. During propagation within the Central Nervous System, nerve cells (neurons) are killed and cannot divide to replace themselves. Within a couple of weeks the infectious stage ends but virus shedding from fecal material can continue for a few more weeks.

For most of us permanent damage resulted this way. Nevertheless, most of us recovered some function. Recovery involved a number of separate adaptations. For example, we substituted muscles that were less damaged (by nerve loss) for necessary tasks, we sprouted new end fibers from surviving nerves, confering on them a burden for which evolution had not prepared them. The ratio of muscle fiber types changed: the proportion of endurance fibers vs. strength fibers was altered in favor of the endurance type. These

adaptations served us well for a long time. Some are failing us now. This is the simplest and most understandable explanation for Post Polio Syndrome. Perhaps, because we are losing more endurance type muscle, manual strength tests on many of us fail to demonstrate the severity of muscle fatigue we experience. Anyway, these are the most likely explanations for the onset of PPS.

Questions do remain however. Why do some polio survivors and not others experience PPS? Is PPS a disease process which is a natural consequence of having polio? Can you have polio with the damage and repair adaptations and remain stable for life? If so, why? To complicate the legacy of our biological interaction with polio virus is the recent discovery of polio virus genes inside the spinal cords PPS patients. These genes are not present in polio survivors without PPS. This seems to be telling us something. And, the obvious question is “do these fragmments of virus cause PPS?”

It is possible to remove the outer protein shell from a polio virus by treating the virus with phenol. When this was done in the 1940’s it was found that the genes inside were infectious without their outer coat. Virus genes could enter cells but were a thousand times less infective than whole virus. We can also assume polio’s genes, in the cords of PPS patients, are defective. That is, they have mutated and are not propagating normally by bursting cells. Perhaps, as foreign viral parts, these genes can trigger inflammation, or interfere with nerve cells in another way. New research may resolve these questions. In the meantime polio virus biology remains ineluctably entwined with our own.

The Lincolnshire Post-Polio Network

Registered Charity No. 1064177

An Information Service for Polio Survivors and Medical Professionals

All enquiries, book requests, medical article requests, membership fees, items for newsletters and donations to

The Secretary, Lincolnshire Post-Polio Network

PO Box 954, Lincoln, Lincolnshire, LN5 5ER United Kingdom

Telephone: +44 (0)1522 888601

Facsimile: +44 (0)870 1600840

Email: info@lincolnshirepostpolio.org.uk

Web Site: www.lincolnshirepostpolio.org.uk

The Lincolnshire Post-Polio Network takes great care in the transcription of all information that appears at this site. However, we do not accept liability for any damage resulting directly or otherwise from any errors introduced in the transcription. Neither do we accept liability for any damage resulting directly or otherwise from the information available at this site. The opinions expressed in the documents available at this site are those of the individual authors and do not necessarily constitute endorsement or approval by the Lincolnshire Post-Polio Network.

© Copyright Eddie Bollenbach 1998 1999 2000

© Copyright The Lincolnshire Post-Polio Network 1998 – 2010.

Copyright is retained by The Lincolnshire Post-Polio Network and/or original author(s). Permission is granted to print copies of individual articles for personal use provided they are printed in their entirety. Links from other Internet WWW sites are welcome and encouraged. We only ask that you let us know so that we can in future notify you of critical changes. Reproduction and redistribution of any articles via any media, with the exception of the aforementioned, requires permission from The Lincolnshire Post-Polio Network and where applicable, the original author(s).

Document preparation: Chris Salter, Original Think-tank, Cornwall, United Kingdom.

Document Reference: <URL:http://www.zynet.co.uk/ott/polio/lincolnshire/library/bollenbach/biology1.html> Created: 22nd August 1998

Last modification: 29th April 2021st January 2010.00

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Dr Henry writes about Ambien

Dr. Henry writes about Ambien

Ambien is a very effective and relatively safe sleep hypnotic, but it is not indicated for long term use. Below are the indications for Ambien in the current 1998 PDR.

INDICATIONS AND USAGE:

Ambien (zolpidem tartrate) is indicated for the short-term treatment of insomnia. Hypnotics should generally be limited to 7 to 10 days of use, and reevaluation of the patient is recommended if they are to be taken for more than 2 to 3 weeks.

Ambien should not be prescribed in quantities exceeding a 1-month supply (see Warnings). Ambien has been shown to decrease sleep latency and increase the duration of sleep for up to 5 weeks in controlled clinical studies (see Actions/Clinical Pharmacology).

Although Ambien does not produce the degree of drug dependence of the benzodiazepines, it is a controlled substance and requires a Federal license to prescribe. The following is mentioned in the PDR

DRUG ABUSE AND DEPENDENCE:

CONTROLLED SUBSTANCE: Zolpidem tartrate is classified as a Schedule IV controlled substance by federal regulation.

ABUSE AND DEPENDENCE: Studies of abuse potential in former drug abusers found that the effects of single doses of Ambien (zolpidem tartrate) 40 mg were similar, but not identical, to diazepam 20 mg, while zolpidem tartrate 10 mg was difficult to distinguish from placebo. Sedative/hypnotics have produced withdrawal signs and symptoms following abrupt discontinuation. These reported symptoms range from mild dysphoria and insomnia to a withdrawal syndrome that may include abdominal and muscle cramps, vomiting, sweating, tremors, and convulsions. The U.S. clinical trial experience from zolpidem does not reveal any clear evidence for withdrawal syndrome. Nevertheless, the following adverse events included in DSM-III-R criteria for uncomplicated sedative/hypnotic withdrawal were reported during U.S. clinical trials following placebo substitution occurring within 48 hours following last zolpidem treatment: fatigue, nausea, flushing, light-headedness, uncontrolled crying, emesis, stomach cramps, panic attack, nervousness, and abdominal discomfort. These reported adverse events occurred at an incidence of 1% or less. However, available data cannot provide a reliable estimate of the incidence, if any, of dependence, during treatment at recommended doses. Rare post-marketing reports of abuse, dependence and withdrawal have been received. Because persons with a history of psychiatric disorders or addiction to, or abuse of, drugs or alcohol are at increased risk of habituation and dependence, they should be under careful surveillance when receiving zolpidem or any other hypnotic.

I have personally prescribed Ambien for patients for longer than one month time periods, but in PPSers, one must be convinced that the Ambien is not hiding an underlying respiratory or sleep apnea problem and that the Ambien is not contributing to an underlying respiratory problem. If there is an existent sleep apnea problem or respiratory difficulties, Ambien should be used with caution and only under the supervison of a physician familiar with PPS as it may intensify the existent problem. I personally think that Ambien holidays would be wise in many PPSers. Many can tolerate Ambien holidays by using Tylenol PM (combines one extra strength Tylenol and 25 mg of Benadryl) or Benadryl 25mg (OTC), taking one or two at bedtime. Of course, in every case, your individual management should discussed and managed by your personal physician. I should also mention that Ambien in combination with any other central nervous system acting drug should be used with caution, especially in PPSers. Again, consult your physician about Ambien in combination with other drugs.

Henry Holland, Richmond., Virginia, USA. Henry4FDR@aol.com

3rd August 1998

According to Raymot’s International Generic-Brand Dictionary Ambien is marketed in the U.K. under the brand name Stilnoct. The Lincolnshire Post-Polio Network

Registered Charity No. 1064177

An Information Service for Polio Survivors and Medical Professionals

All enquiries, book requests, medical article requests, membership fees, items for newsletters and donations to

The Secretary, Lincolnshire Post-Polio Network

PO Box 954, Lincoln, Lincolnshire, LN5 5ER United Kingdom

Telephone: +44 (0)1522 888601

Facsimile: +44 (0)870 1600840

Email: info@lincolnshirepostpolio.org.uk

Web Site: www.lincolnshirepostpolio.org.uk

The Lincolnshire Post-Polio Network takes great care in the transcription of all information that appears at this site. However, we do not accept liability for any damage resulting directly or otherwise from any errors introduced in the transcription. Neither do we accept liability for any damage resulting directly or otherwise from the information available at this site. The opinions expressed in the documents available at this site are those of the individual authors and do not necessarily constitute endorsement or approval by the Lincolnshire Post-Polio Network.

© The Lincolnshire Post-Polio Network 1997 – 2010.

© Copyright Henry Holland 1997 1998 1999 2000.

Copyright is retained by The Lincolnshire Post-Polio Network and/or original author(s). Permission is granted to print copies of individual articles for personal use provided they are printed in their entirety. Links from other Internet WWW sites are welcome

and encouraged. We only ask that you let us know so that we can in future notify you of critical changes. Reproduction and redistribution of any articles via any media, with the exception of the aforementioned, requires permission from The Lincolnshire Post-Polio Network and where applicable, the original author(s).

Document preparation: Chris Salter, Original Think-tank, Cornwall, United Kingdom.

Created: 3rd August 1998

Last modification: 21st February 2010.

Dr Henry writes about Ambien Read More »

Pain, physical activity, and disability in individuals with late effects of polio

Pain, physical activity, and disability in individuals with late effects of polio.

Willen C, Grimby G

Department of Rehabilitation Medicine, Goteborg University, Sweden.

 

OBJECTIVE: The aim of this study was to provide a description of pain and its relationship to the effects of polio, physical activity, and disability.

 

DESIGN: Assessment instruments used were: a pain questionnaire, a pain drawing, a visual analogue scale (VAS), a 30-m walk indoors, isokinetic muscle strength, serum creatine kinase concentration, the Physical Activity Scale for the Elderly, and the Nottingham Health Profile (NHP).

SETTING: A university hospital department.

SUBJECTS: Thirty-two consecutive individuals with late effects of polio.

RESULTS: More than 50% of the individuals had pain every day, mostly during physical activity. The mean VAS score for daily pain intensity was 55mm, range o to 93mm. In the lower limbs cramping pain was the most common pain characteristic in both polio-affected and non-polio-affected limbs. In the upper limbs and in the trunk, aching pain was the most common pain characteristic, especially in the polio-affected areas. The degree of muscle weakness had no correlation to pain experience. The walking test demonstrated a relatively small difference between spontaneous and maximal walking speed.

The NHP questionnaire demonstrated that all six dimensions (energy, pain, physical mobility, sleep, emotional reactions, and social isolation) were affected. The dimensions pain and physical mobility both strongly correlated with energy. CONCLUSIONS: There is a relationship between physical activity in daily life and experience of pain. In many postpolio individuals who experience a high level of pain, spontaneous and maximal walking speed are approximately the same. It is strongly recommended that individuals with late effects of polio, experiencing aching and especially cramping pain, modify their level of physical activity.

PMID: 9710162, UI: 98373936

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Late Effects of Poliomyelitis

Late Effects of Poliomyelitis

Peter E. Parker, BSc, BSc(PT), MD, FRCPC Physiatrist, Neurorehabilitation Services, West Park Hospital, Toronto, ON

(Reproduced with permission from MVATURE IVICUIUIIVL UMIVUM 1998; 1 (4): 52-4.)

The late effects of poliomyelitis can be categorized into three distinct symptom complexes. The first, Progressive Muscular Atrophy, is the progressive wasting and weakening of muscle group[s] leading to progressive loss of neuromuscular function. This is relatively rare. On the other hand, the other two complexes, Biomechanical Sequelae of poliomyelitis and Post-Polio Syndrome, are common and account for a significant degree of impairment and disability in this aging population.

A large number of Canadians who developed polio as A children or young adults are now reaching their fifth and sixth decade. With this aging, these individuals are facing unique problems as a result of having polio many years ago, problems that have come to be known as The Late Effects of Poliomyelitis. The last epidemic of poliomyelitis in Canada was in 1955. As a result of the Salk and Sabin vaccines, the number of cases decreased dramatically after this year.

A ribonucleic acid virus of which there are three strains, causes poliomyelitis. The virus attacks and destroys the anterior horn cells (alpha motor neurons) of the spinal cord and brain stem. The alpha motor neuron and the many muscle fibres innervated by it is called a “motor unit’. Loss of these motor units results in the paralysis associated with poliomyelitis. Surviving motor units, recognizing that muscle fibres are left without innervation, send out terminal axon branches, referred to as “collateral sprouting, thereby, re-innervating the muscle to some degree. As a result of this process, an alpha motor neuron may innervate up to seven times the normal number of muscle fibres. These large units are termed ‘giant motor units,’ and account for the recovery of muscle function following the paralysis caused by the poliomyelitis virus.

Polio survivors were taught to push themselves, and regardless of the degree of neurological recovery, they have led active and productive lives. Now, due to the late effects of poliomyelitis, they must relive their experience with poliomyelitis. What was in the past can no longer remain there. The childhood memories of isolation, separation, iron lungs, bracing and pain surface as these poliomyelitis survivors age. As a result, they must deal

BIOMECHANICAL SEQUELAE The most common biomechanical sequelae is premature osteoarthritis of both upper and lower extremity joints. Lack of normal muscle strength around lower extremity joints results in abnormal ‘wear and tear’ on these joints. As a result, premature degeneration develops, particularly in the knee joints. This is characterized by joint pain with weight bearing activities, joint stiffness following periods of immobility, joint effusion and joint instability. This instability develops as a result of loss of integrity of the joint capsule and ligaments in addition to muscle weakness. As a consequence, falls become increasingly frequent, leading to further injury.

Premature degeneration of the hip and ankle joints is also a common complication due to residual weakness in the lower extremities as a result of poliomyelitis. Often, these joint problems develop in the so-called ‘good leg’, the extremity not affected by polio. This is a result of over-work of the strong leg in order to compensate for the weaker extremity. Early degenerative osteoarthritis often develops in the upper extremities, particularly in the shoulder joints, due to prolonged use of walking-aids such as crutches or a cane. Joint pain and the concomitant loss of function has a significant impact on the quality of life. a disproportionate impact on function. Perhaps the most disabling and least understood late This weakness may or may not be demonstrable in a effect of poliomyelitis is Post-Polio Syndrome. This is a clinical assessment. This may be due to the insensitivity term, coined in 1984 following the first international of manual muscle-testing or by the fact that the weakness Post-Polio Conference in Warm Springs, Georgia, to is due more to easy fatiguability of muscle as opposed to describe a cluster of symptoms and signs experienced by pathophysiological weakness per se. Irrespective of the poliomyelitis survivors 25 to 40 years after their original etiology of the reported weakness, it has a profound illness. The criteria for the diagnosis of Post-Polio impact on the individual’s level of function. Frequency of Syndrome includes a history of paralytic poliomyelitis, falls increase, and concerns regarding safety arise. a stable period of neurological status after recovery, Ambulation may become increasingly difficult, necesitating residual neurological deficits due to the initial the use of braces and ambulatory aids. poliomyelitis, new subjective muscular weakness,  Very little is understood about the pain in Post-Polio generalized fatigue and diffuse muscle/limb pain.

Syndrome, recently termed Post-Polio Pain’ (Personal Our understanding about Post-Polio Syndrome is communication, International Conference on Polio, St. ed at the present time. We know that Post-Polio Louis, Missouri, May, 1997). This pain does not resemble Syndrome is not a reactivation of the poliomyelitis virus. that of other more familiar conditions. It is described Preliminary research has demonstrated some as an ache or a burning. It tends to be migratory and data, but currently, there is insufficient evidence to not necessarily localized to muscles or joints. It tends to attribute this condition to an autoimmune phenomenon. worsen towards the evening and responds poorly to There is inconclusive evidence to conclude that Post analgesics. Polio Syndrome is a result of some other infectious While weakness, pain and fatigue tend to be the hall process. In other words the etiology of Post-Polio marks of Post-Polio Syndrome, this condition can be Syndrome is unknown.

associated with a number of other problems including The prevalence of Post-Polio Syndrome was originally decreased balance, frequent falls for no apparent reason, estimated to occur in one-third of polio survivors. variable paresthesiae, daytime somnolence, non-restorative However, it has recently been estimated to be as high as tive sleep, sleep apnoea, restless leg syndrome and two-thirds of all polio survivors (Personal communication lowing difficulties. Furthermore, individuals may report, International Conference on Polio, St. Louis, mild cognitive problems such as impaired short-term . Missouri, May, 1997). Perhaps, the most debilitating memory and decreased concentration. aspect of Post-Polio Syndrome is the fatigue associated The diagnosis of Post-Polio Syndrome is one of exclusion with this condition. The fatigue varies in severity Other causes for a patient’s symptoms should be ever, many patients report hitting the proverbial ‘Post- vigorously investigated. The list of differential diagnoses Polio Wall’, referring to an inability to carry on with an is long; however, the more common conditions that Post activity due to fatigue. This often occurs in the early to Polio Syndrome may mimic include fibromyalgia, mid-afternoon and necessitates a rest or nap. Fatigue fre- hypothyroidism, early polymyositis and depression. A precludes socialization and other enjoyments, thorough history and physical examination along with thereby detracting from the quality of life with advancing laboratory investigations will usually lead to the underly age. Individuals with Post-Polio Syndrome frequently etiology of the patient’s symptoms. report increasing muscle weakness. This new weakness is All patients should be screened for psychological fac not necessarily confined to muscles or areas of the body tors, particularly depression. This, however, can be originally affected by the poliomyelitis virus. It can occur cult. One must determine if the depression is a primary in the so called ‘normal’ limbs. This weakness can also cause of the individual’s somatic complaints or is the affect the trunk musculature resulting in truncal instability- depression secondary to the effect that Post-Polio, impaired balance and respiratory complications. Syndrome has had on that individual’s quality of life.

Ten percent of motor units are lost due to degeneration There is no test for Post-Polio Syndrome. with each decade after the age of 60 years due to the Electromyography (EMG) can demonstrate features of aging process. Poliomyelitis survivors may have fewer the original poliomyelitis infection, i.e. giant motor units motor units as a result of the original poliomyelitis infection with no ongoing denervation. EMG cannot, however, and the remaining motor units may be giant units. diagnose Post-Polio Syndrome, and the EMG may, in Therefore, a relatively small loss of motor units can have fact, be normal in spite of the history of poliomyelitis.

Therefore, the diagnosis of Post-Polio Syndrome should only be made when the criteria outlined above have been met and all other potential etiologies have been excluded.

TREATMENT Unfortunately, there is no ‘cure’ for Post-Polio Syndrome. As noted above, traditional analgesics tend to work poorly in this patient population. Non-traditional therapies such as tricylic agents may, in some cases, be effective. Traditional physiotherapy tends to be of limited value, whereas, acupuncture and Shiatsu massage tend to be more effective for pain relief.

Various pharmacological agents have been used to treat the fatigue of Post-Polio Syndrome with little success. Methylphenidate (Ritalin) has been used, with anecdotal reporting of improvement in fatigue. No controlled studies are available to evaluate the efficacy of this drug. Pyridostigmine (Mestinon) has also been tried. This drug has recently been evaluated in a clinical study by Doctors Neil Cashman and Daria Trojan of the Montreal Neurological Institute. Unfortunately, there was no evidence of improvement in reported severity of fatigue in individuals using this drug. The authors do not recommend the use of pyridostigmine for the fatigue of Post- Polio Syndrome. Therefore, the primary management of fatigue in this condition is through energy conservation techniques and pacing strategies.

Appropriate exercise is extremely important in poliomyelitis survivors. In the early days, individuals recovering from poliomyelitis were instructed to exercise. They were led to believe that the harder they worked at exercise, the better their recovery would be. Now, however, it is believed that overwork of giant motor units may cause premature degeneration of these units due to ‘burn out’, leading to muscle weakness and loss of function. On the other hand, an individual should avoid muscle weakness that results from lack of use. Therefore, these individuals should per- form regular exercise that is of low resistance and non-fatiguing in nature. Given the many orthopaedic problems associated with the late effects of poliomyelitis, water exercise is usually the most effective and safe method of maximizing and maintaining muscle strength.

The goal of treatment is to enhance the quality of life in those individuals with the late effects of poliomyelitis. This is achieved through lifestyle management, consisting of energy conservation and appropriate exercise. Various assistive devices are available to enhance the individual’s level of function.

When indicated, pulmonary function tests and a swallowing evaluation will help to direct appropriate treatment of these problems.

Psychological counseling may be required, particularly when a reactive depression exists. Psychological intervention can help these individuals deal with their physical limitations and functional losses. Some require assistance to accept the assistive devices that are now necessary for day to day activities. Others need help to deal with repressed childhood memories that can no longer remain buried.

Although there is no cure for Post-Polio Syndrome, the prognosis can still be positive. With the appropriate interventions and a willingness on the part of the poliomyelitis survivor to adopt the life-style changes required, these individuals can maintain a high level of quality of living as they age.

The Post-Polio Clinic, West Park Hospital, Toronto, is the only one in Ontario and one of only a few such clinics in North America. The clinic provides a comprehensive multidisciplinary evaluation of poliomyelitis survivors. The core team consists of a clinic coordinator, physiatrist, occupational therapist, physical therapist and social worker. Support services include psychological, othotics, dietary, respiratory, : sleep and swallowing programs. Following their assessment in the Post-Polio Clinic, problems related to the late-effects of poliomyelitis are identified and management recommendations are offered to the client and their referring physician. The objective of the Post-Polio program is to address the needs of this very unique aging population of poliomyelitis survivors. The Post-Polio Clinic can be accessed by any physician wishing to refer one of their patients for assessment. More information regarding the services offered through the Post-Polio . Clinic, West Park Hospital, can be obtained by tele phone, (416) 243 3600, ext. 2260, or by fax, (416) 243 8947.

Late Effects of Poliomyelitis Read More »

A dogma upended from down under. Sister Elizabeth Kenny’s polio treatment

Reprinted with permission of the North Carolina Medical Journal, copyright © 1998 North Carolina Medical Society.

North Carolina Medical Journal Web Site:

http://www.ncmedicaliournal.com

A Dogma Upended From Down Under Sister Elizabeth Kenny’s Polio Treatment

by Mark W. Swaim, MD, PhD

Dr. Swaim is with Duke University’s Division of Gastroenterology and Hepatology, Department of Medicine, Durham, NC 27710.

Editor’s note: This essay was one of two honored with the Irwin A. Brody Award for essays on the history of medicine. The award was sponsored by the Brody Fund for the History of Neurosciences and the Medical History Society at Duke University, Durham, North Carolina.

Wonderful little, when all is said, Wonderful little our fathers knew, Half their remedies cured you dead Most of their teaching was quite untrue…

–Rudyard Kipling

In 1993, poliomyelitis broke out in Sudan, containment has been hampered by civil war. As with the polio epidemics that terrified Americans throughout the 1940s, 85% of those afflicted in the Sudan were less than 5 years old. These events seem distant to us, the threat of polio was eradicated from North America as of 1991. Today, the names Salk and Sabin are associated with polio because their vaccines eliminated it from the developed world. But a generation ago, the name for polio was Kenny.

On April 14, 1940, Elizabeth Kenny, a broad-shouldered Australian Army nurse in a wide-brimmed hat, disembarked from an ocean liner, and stepped onto a pier in Los Angeles. [1 p203] Portmanteau in hand, she was alone in every sense. She was 59 years old, bitter and battle-fatigued, though not from combat. No cameras recorded her arrival, though within two years news photographers’ flashbulbs would punctuate her every public move. She was adamant that the universal standard of care for polio-afflicted patients rigid casting of diseased limbs was wrong.

As a lieutenant, she had earned the deference given to a head nurse, and the marquee moniker that would soon stir up professional and populist circles: Sister Kenny. In British

tradition, a head nurse is called by the honorific “Sister,” but how Elizabeth Kenny came by this title is speculative. She lacked formal education, was not above obfuscation about her qualifications (in later years she lied about her background for Who’s Who in America), and possibly opportunized wartime circumstances, so “Sister” may have been self-bestowed. Because of her authoritarian manner, colleagues would have been unlikely to question the designation, whether earned, conferred, or assumed. She kept asking, plaintively, “Why condemn patients to life with splinted arms and hobbled legs when they can be rehabilitated by my method”?

Two years earlier, in 1938, a ballyhooed position paper in the Medical Journal of Australia [2p187] had ridiculed Sister Kenny for asking that question,

The paper was produced by a special Australian Royal Commission, appointed in 1935 at her demand, to study her controversial method. Limb splinting for polio was an article of faith among English-speaking medical communities, and Kenny’s insistence that it be abandoned infuriated Australian physicians. [3] She was a provincial woman, a homemade nurse without solid professional credentials, practicing what doctors (nearly all men) saw as insubordination.

Though she relished her role as David to their Goliath, Kenny was sure that a balanced examination would reveal the superiority of her approach. She cooperated with the Commission’s doctors in their appraisal of how polio victims fared when treated by her regimen of massage and “muscle reeducation.” The Commission included Kenny’s longtime friend, advocate and mentor, Dr. Aeneas McDonnell. She was confident that its findings would vindicate her.

Her hopes were dashed. The Commission’s findings, kept secret until the report’s release, condemned her:

“We are now in a position to sum up this discussion of the Kenny method of treatment of poliomyelitis. The abandonment of immobilization is a grievous error and fraught with great danger, especially in very young children, who cannot cooperate in reeducation. It would be particularly damaging to adopt the Kenny non-splinting method of treating early cases_ .” [2p203-4]

A critical reading of the report betrays serious flaws rife preconceptions, and dismissal of her ideas because they flew in the face of conventional wisdom. Kenny was devastated even though the report contained a small-print appendix acknowledging a recent British study that described marked improvement in 370 patients treated with the Kent concluding, “No published results we know of can compare with those achieved in Australia [by the Kenny method].” [4] The Commission chafed in rebuttal:

“To the anatomist and orthopedist, this statement is so ridiculous as to need no further comment.” [2 p2221

Sister Kenny knew that the medical establishment, at least in Australia, would not tolerate her. Her clinical allies rethought their allegiance to her. She would be unable to practice nursing effectively in Australia. She packed.

A Dreaded, Crippling Scourge

How did Sister Kenny care for patients with acute poliomyelitis? And why did the Kenny method, different from standard approaches, provoke the wrath of medical authorities?

In June 1911, Elizabeth Kenny was called to see a child, Amy McNeil, with acute infantile paralysis (poliomyelitis). Kenny, working alone in the desolate outback near Queensland, Australia, was an untrained, self-appointed nurse who roved on horseback among desert homesteaders. She was 31, and had never encountered polio before that summer outbreak. What she saw, first in this farm family’s daughter, appalled her:

” It was the little girl [Amy), my special pet, who was ill. She lay upon a cot in the most alarming attitude. One knee was drawn up toward the face, and the foot was pointed downward. The little heel was twisted and turned outward, or abducted, as we say. One arm lay with a flexed elbow across the chest. Any attempt to straighten a member caused the child extreme pain. The little golden-haired girl was indeed very sick, and with an ailment that was unknown

to me

[Her] obvious agony called for immediate action, The cruel shortening of the muscles affected, the wild fear expressed in the once laughing blue eyes, the tenseness and terror of contact even with the loving arms of the almost distracted mother, were sufficient to wring the heart of anyone who witnessed them.” [1 p22-3]”

Even allowing for some license in this description (written with a biographer’s help), the clinical acumen is apparent. She recognized muscles in tetanic spasm, not merely contracting unopposed by disease-stunned muscles opposite them.

She was baffled, scared, and miles from help. A scrappy bush nurse desperate for advice, she telegraphed Aeneas J. McDonnell, MB, BCh, a clinical mentor and family friend. McDonnell was a highly-regarded physician in nearby Toowoomba. His Morse-code reply

came by wire hours later. It gave her little hope but, unwittingly, sage advice: “Infantile paralysis. No known treatment. Do the best you can with the symptoms presenting themselves.” [1 p22-3)

Virtuoso Ignorance

She did precisely as he suggested. Her crisis, as Confucius says in his Analects, was opportunity. “Fortunately,” she writes, “I was completely ignorant of the orthodox theory of the disease.” [1 p22-23]

She poured steaming-hot water over strips of wool. Assisted by the child’s parents, she applied these hot, wet compresses hour after hour to affected limbs. By her reckoning, the tense muscles needed relaxation, and moist heat seemed a good strategy. Gradually, the hot packs eased the agonizing, palpable muscle spasms of the acute myelitis. At the time, neither the term “spasm” nor the occurrence of tetanic contractions in affected muscles was accepted by clinicians treating polio. Sister Kenny would be told that the muscles she had seen only seemed to have increased tone. Things looked that way, standard teaching argued, because muscles on the limb’s opposing side had been rendered flaccid by poliovirus.

Paracelsus said that patients should be the clinician’s textbook, for “they will never mislead.” As Kenny saw for herself at the bedside, muscles that were, at first, animated by spasticity soon became flaccid, leaving arms and legs useless. Depending on the spinal levels of anterior horn cells affected, various extensor and flexor muscles were left with more or less severe impairment of function. The distribution was commonly asymmetric.

To Sister Kenny, it seemed as though these slackened muscles had “forgotten” how to work, or the brain had forgotten how to control them. She reckoned that nerve damage had “alienated” them from the brain. The muscles, denervated by poliovirus-induced damage in the spinal cord, needed “reeducation,” she said. But how could one work a muscle that was not downloading commands from the brain? She knew that striking muscle tendons provokes a reflex muscle contraction. This was a way to make muscles work without the brain’s intervention. Methodically, diligently, shaman-like, she spent long sessions at patients’ bedsides, striking the patellar, biceps, and other tendons. She guessed that this would maintain muscle strength until brain and muscle could become reacquainted. [5]

Meanwhile, worried that unused joints would stiffen, she began flexing them passively through their ranges of motion. Diseased limbs needed increased blood flow, she decided, so she massaged them. She flexed and extended muscle groups, stimulating proprioceptive sensations. Throughout, she helped the afflicted children devise mental images of how their brains could command their “alienated” muscles to work again.

Kenny was too unsophisticated clinically for a pattern-recognition approach to polio. She had neither seen, studied, nor been taught about the disease. In blunter terms, she was too unschooled to begin automatically the standard treatment of polio fixed immobilization of affected limbs. If her formulation of the problem was homespun, it was leavened by hope and enthusiasm. A redeeming positivism ran through out the Kenny method. She energetically set upon the affected arms and legs of her patients. Her task was to enliven the children, encourage them, and reanimate their limbs to recovery by hands-on persistence. She cheered when they showed improvement.

In the beginning, the rudimentary Kenny method was extemporaneous: Kenny’s wits collaborating with nature to help Amy McNeil, and other children stricken in the Australian outbreak of 1911, to walk again. Word spread in the outback. Her ignorant improvisation worked so well that when doctors saw the results ambulatory children, often none the worse for their brush with crippling illness they scoffed. (1 p29-32] A mistake had obviously been made. The unschooled Kenny must have misinterpreted what she had seen. If these children had truly come down with polio, she was told, they would be crippled.

Like her medical and orthopedic contemporaries, Kenny recognized that the polio symptom complex, untreated, left deformed, functionless limbs, twisted spines, and contracted muscles. Affected muscles might be overcome by stronger muscles on the opposite side. Dangerous torque and shear forces would be exerted on joints and on the vertebrae. The disease made limbs crooked, and the task of doctors was to force those limbs, and keep them, straight. Here Kenny broke rank with conventional wisdom.

Orthopedic Orthodoxy

The “orthodox theory” of polio, summarized in 1941 in the Journal of the American Medical Association, [6] was, ironically, published just five months before JAMA endorsed the

  1. Irwin, a noted clinician at the Warm Springs Foundation (Georgia) polio treatment center (famed for a presidential patient, see below) wrote:

“The first and most important indication, is absolute and complete rest and no exercise. Exercise is contraindicated as much in these cases as in cases of acute myocarditis or overfeeding a patient with intestinal ulcerations following typhoid . Complete rest is the basic principle of treatment which I wish to emphasize . In addition to recumbence and non-weight bearing, adequate rest is best provided by plaster casts. Casts are comparatively inexpensive and are more positive_. The patient is more comfortable_. My purpose is to emphasize the importance of complete rest.” [7] Dr. Irwin’s paper articulates flatly the pre-Kenny standard of polio care. Its innuendo, however, provokes hopelessness and stigmatization. To contract polio was to face life with crutches and garish orthopedic devices or, possibly, confined to bed. Irwin calls casts “more positive” than splints, but that he resorts to such a description underscores the dreadful negativity of the treatment advocated by experts. In 1962, this orthopedic approach was condemned as “the abuse of rest.” 181

When Sister Kenny came in 1940, America was the right place at the right time for someone offering hope to polio victims. After a serious polio epidemic in 1916, the United States had experienced relatively few cases, but polio outbreaks were on the rise again. In public view, future-President Franklin D. Roosevelt was stricken in 1921. Outbreaks, real, rumored, or feared, were the stuff of newspaper headlines. Families cancelled spring and summer vacations, as these seasons were riskiest for outbreaks. People avoided public places and shunned persons rumored to have polio. Polio, or the fear of it, was a scourge threatening the social fabric of this country. 91

Kenny’s first months in America were spent much as she had lately lived in Australia, roving in search of acceptance, touting her polio ideas. She arranged introductions to prominent surgeons at tertiary-care medical centers. Yet garnering attention for her concepts without calling attention to herself proved nearly impossible. She was a woman an uneducated spinster with quaint hats, a brusque manner and a peculiar accent asking powerful white-coated men in a male establishment to rethink their most entrenched assumptions about polio. Listening to Sister Kenny required a suspension of disbelief,

Two men who listened and got it right were Dr. Wallace Cole, chief of orthopedic surgery at the University of Minnesota Medical School (Minneapolis), and Dr. Miland Knapp, a young surgeon who chaired the school’s department of physical therapy. Sister Kenny had come to Minneapolis after failing to win converts on either coast. 31

Sister Kenny’s claims, based on scattered newspaper reports of her visits, began to attract a populist following. To many, Kenny was a charismatic underdog whose rejection by doctors suggested that she had a disarmingly powerful message. She offered hope where doctors offered only crutches, braces, and guarded prognoses. Whether she was right or wrong, at least one well-placed person, Basil O’Connor, recognized that her popular admiration could be a motherlode of political equity.

O’Connor was the shrewd amanuensis and law partner of President Franklin D. Roosevelt. O’Connor was an astute businessman, his nose for trends and opportunities ever in the wind. He was the driving force behind the National Foundation for Infantile Paralysis (founded by FDR in 1938 and the White House’s favorite charity, it was christened “March of Dimes” by entertainer Eddie Cantor). If the Foundation cautiously supported Kenny, donations and presidential approval might soar in tandem.

With financial backing from the National Foundation for Infantile Paralysis, Drs. Cole and Knapp enrolled 50 patients with early poliomyelitis in a clinical trial in Minneapolis. Their study, begun in June 1941, would treat patients by the Kenny method, either with the supervision of Sister Kenny or with assistants trained by her. [3]

An unsigned editorial in JAMA on December 6, 1941, begins the concession to Sister

Kenny:

“At one time it was believed that in early cases of poliomyelitis, complete immobilization should be done as far as the affected muscles were concerned.

Several years ago, Sister Kenny in Australia recommended that early movement should be allowed and that affected muscles should be accorded the benefit of massage and passive movement instead of immobilization.” [Motor units] become atrophic under conditions of immobilization, since muscle fibers are dependent on their local reflexes (e.g., stretch reflexes) and immobilization arrests the flow of these proprioceptive impulses as effectively as it abolishes the flow of lymph. Massage and freedom of movement, therefore, are clearly indicated_.” [10]

On December 20, 1941, another JAMA editorial cited a meeting of the National Foundation for Infantile Paralysis:

“It is the opinion of this Committee on Research for the Prevention and Treatment of After-Effects of the National Foundation for Infantile Paralysis, after a study of the report of the workers at the University of Minnesota, that during the early stages of infantile paralysis the length of time during which pain, tenderness, and spasm are present is greatly reduced and contractures caused by muscle shortening during this period are prevented by the Kenny method.” [18]

The editorial applauds the “revolutionary_abandonment of early rigid splinting and the adoption of continuous and meticulous hydrotherapy and physical therapy to maintain the function of muscles which still have nerve supply at highest possible point, at the same time producing increased comfort for the patient.” [11] Dr. Cole and Dr. Morris Fishbein, JAMA editor-in-chief, broadcast a national radio address endorsing the Kenny method as the new standard of care that should replace existing approaches polio. [2]

Sister Kenny became and remained a celebrity ever pressed for autographs, her face instantly recognized, her photograph displayed like an icon in many American homes. In 1943, and for nine years thereafter, she ranked behind only Eleanor Roosevelt as the most-admired woman in America. She received honorary doctorates from the University of Rochester, Rutgers, and New York University. She returned to her outback home a hero, and died near Queensland, Australia, in 1952.

Truth and Consequences

In Aesopus Emendatus, Ambrose Bierce writes of a woman named Truth: “I live in the desert in order to be near my worshippers when they are driven from among their fellows. They all come, sooner or later.”

Kenny’s victory was a Pyrrhic one: a revised treatment for a disease in its twilight, promulgated by a woman in her twilight. The cost to Kenny was high: professional ostracism from her homeland, three decades of rejection and, arguably, personal happiness. For us now, two aspects of her story are salient. To paraphrase Santayana, history repeats itself because no one is listening. These two aspects of the Kenny saga are likely to be experienced by others who challenge conventional wisdom.

First, Kenny’s method emerged from an improbable source of discovery. Despite her lack of formal education (maybe even because of it) Sister Kenny perceived a deeper truth about the clinical manifestations of acute polio. For many, education is synonymous with training, prescribing what must be learned and should be believed. This can preempt open-mindedness. Barry Marshall, the Australian physician who found that Helicobacter pylori causes most upper gastrointestinal ulcers, says he was able to do his work because he wasn’t adequately schooled in the conventional belief that acid caused all ulcers. [12]

Kenny’s story is emblematic of the process of seeing “see-ing,” as Charcot said to the medical students 13 things afresh, being helped but not misled by learning. Sister Kenny wrote of a physician who said he wanted to learn about her method and professed an open mind: “I have encountered many ‘open minds’ in the medical profession in many parts of the world, and I have learned to proceed with caution when I come upon one now. Some minds remain open long enough for the truth not only to enter but to pass on through by way of a ready exit without pausing anywhere along the route.” [1 p29-32]

In his Choruses from ‘The Rock,’ T. S. Eliot asks, “Where is the wisdom we have lost in knowledge?” Sister Kenny showed that rehabilitation of the polio-afflicted was simple and reasonable. It makes one wonder whether decades of entrenched clinical dogma about polio was sensibly formulated. Carrying Eliot’s sentiment further, is wisdom undermined by learning? Sister Kenny’s work was predicated on a primal reverence for nature beheld firsthand and undiffracted by learning. Kenny’s initial encounter with polio evokes the “understanding through empathy” memorably described by British education professor Peter Kelly as he watched 7-year-old children go about observing plants and animals. He contrasts their behavior with that of a group of 14-year-olds:

“The seven-year-olds looked at, smelled, handled, listened to, and even tasted the elements of their environment. They immersed themselves in their individual tasks and came out of their endeavors only occasionally, to inform and sometimes to show off their discoveries to their fellows.

The older children approached their work differently. They used their eyes, but rarely their other senses. They were very concerned with social approval. Were they doing what their fellows were doing? Would they make fools of themselves? When asked questions about their work, they called on the authenticity of the books they had read, television programs they had seen, or what they had been told by their teachers. They remained at a distance from the reality they were studying. The 7-year-olds tended to work themselves right into the reality.

This experience demonstrates what I believe to be a truth: that through the processes of formal education and social development, a young person is drawn away from the realities of his or her environment, away from other living things_.” [14]

Second, Kenny’s saga is a cautionary parable about how often fresh insights are laughed at, and how clinical breakthroughs gain acceptance only after first being called heretical. Prior to Kenny, doctors mistakenly equated one manifestation of polio muscle denervation and weakness with the totality of the illness. Kenny was told sternly that muscle spasms did not exist, and that what she had observed were diseased, weakened muscles simply overcome by opposing muscles. Kenny saw this as flawed reasoning and reckoned that the problem in polio was acute spasm, not flaccidity. This was an essence that doctors had missed.

Though the notions of muscle rehabilitation and passive joint motion were accepted tenets of polio care before Kenny, rehabilitation was rarely, if ever, attempted. Polio was a grim fate because it commonly meant life constrained by orthopedic braces. Limb rest often led to more limb rest because disuse atrophy and flexion contracture put the diseased limb at risk of injury by well-meaning attempts to work it. Bracing limbs prevented deformity, but the limbs became useless for anything other than being braced. Sister Kenny was fond of pointing out how stiff the braced limbs of patients became: “The reply invariably was, ‘That is of little consequence. See how straight (they are].” [1 p29-32)

Much of medicine is comprised of efforts to oppose and neutralize symptoms as if they are disease itself. Thus crooked limbs in polio were forced straight, as though superficial aesthetic rectitude meant better health. Even in our time, doctors generally advise antipyretics for patients with fevers. Much evidence, however, suggests that the febrile response is strongly associated, at least when infection is present, with both shorter duration of illness and greater likelihood of survival, Prior to the recognition of Helicobacter pylori as a cause of peptic ulcer, ulcer therapy was aimed at decreasing acid production. Excessive acid generation, however, is a secondary manifestation of H. pylori infection, and inhibition of acid secretion may promote proliferation of an antibiotic-resistant form H. pylori.

Much of medicine’s history, as with Sister Kenny, documents the tormenting of those who

challenge orthodoxy. On March 20, 1849, Ignaz Philipp Semmelweis was fired from his job as assistant physician in the First Obstetric Clinic of the Allgemeines Krankenhaus in Vienna. (15) He had discovered a clear link between puerperal fever and failure of

wash their hands between examinations or after performing autopsies (deaths were frequent in the clinic). His insistence on hand washing earned him the scorn of

Viennese physicians. He fled Vienna and a promising career in medicine there, and returned to Budapest, his home. Semmelweis died four years later, at age 47, in a mental institution because of psychotic depression. The efforts of peers to ruin him had been successful.

As Canadian physician Earle Scarlett notes, the “human tendency to follow tradition and to blindly refuse to correct error is neatly contained in an old word that we would do well to resurrect and use more commonly. The word is a curious one and bears a strange look to modern eyes mumpsimus. But it is a respectable word and has a most interesting history. It may be defined as ‘a traditional custom obstinately adhered to however unreasonable it may be.” [16]

A Cautionary Story

Nearly 60 years have passed since Elizabeth Kenny came to America. History has not been generous to her. What remains of her legacy is found in Bettmann Archive photographs of Kenny with the children she helped, in out-of-print books, rare newspaper clippings, and Movietone newsreels. Platitudes about her life’s work are easily wrought, and her

ad a cantankerous, self-destructive, untrusting element that precluded long-term collegiality, but her story reminds us how breakthroughs come from unlikely sources, and how they are often recognized as breakthroughs only after first being called heresies. This, too, is the history of medicine.

Acknowledgment: The author thanks Dr. Galen S. Wagner for getting him interested in Elizabeth Kenny.

References:

  1. Kenny E, Ostenso M. And They Shall Walk. New York: Dodd, Mead & Co., 1943. 2. Report of the Queensland Royal Commission on modern methods for the treatment of infantile

paralysis. Med J Aust January 29, 1938. 3. Cohn V. Sister Kenny: The Woman Who Challenged the Doctors. Minneapolis: University of Minnesota Press, 1975. Sister Kenny (RKO Radio Pictures, 1947. Dudley Nichols, director. Starring Rosalind Russell). 4. Mills FH. Treatment of spastic paralysis. BMJ 1937:414-7. 5. Lewin P. Kenny treatment of infantile paralysis during the acute stage. IL Med J 1942:81:281-96. 6. Toomey JA. Diagnosis of poliomyelitis. JAMA 1941;117:269-73. 7. Irwin CE. Early orthopedic care in poliomyelitis. JAMA 1941:117:280-3. 8. Mead S. A century of the abuse of rest. JAMA 1962;182:344-5. 9. Piszczek EA, Shaughnessy HJ, Zichis J, Levinson SO. Acute anterior poliomyelitis: study of an outbreak in west suburban Cook County, Ill.: preliminary report. JAMA 1941;117:1962-5. 10. Editorial. Physiologic anatomy of poliomyelitis. JAMA 1941;117:1980-1. 11. The Kenny method of treatment in the acute peripheral manifestations of infantile paralysis. JAMA 1941;117:2171-2. 12. Marshall BJ. Telephone interview, 1995. 13. Stone I. The Passions of the Mind: A Novel of Sigmund Freud. New York: Doubleday & Co., 1971, pp 166-7. 14. Kelly P. Understanding through empathy. Orion 1983;2:12-6. 15. Bender GA. Great Moments in Medicine. Detroit: Northwood Institute Press, 1966, pp 198-206. 16. Scarlett EP. What is a profession? In: Reynolds R, Stone J (eds). On Doctoring. New York: Simon & Schuster, 1991, pp 119-133.

© Copyright 1998 North Carolina Medical Society

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Cell and Tissue System: Post-Polio Syndrome

Cell and Tissue

 

POSTPOLIO OVERVIEW

 

Acute poliomyelitis is a systemic infectious disease of widely varying severity that predominantly affects the central nervous system and is sometimes complicated by paralysis. Post Polio Syndrome is a secondary disability of poliomyelitis that sometimes occurs later in life (as much as 30-40 years after acute polio) and of varying symptomology. Symptoms include unaccustomed fatigue, new muscle weakness, muscle spasms, respiratory difficultes, sleeping problems and extreme sensitivity to cold. Individuals who are struck with post polio syndrome often face major lifestyle changes due to a decrease in their level of independence.

Disabling conditions related to Post Polio Syndrome:

loss of physical strength in previously “good” limbs including previously affected limbs and musculature, as well as increasing levels of fatigue Potential for disuse syndrome: related to prolonged inactivity secondary to sensorimotor deficits. Potential for trauma: related to muscle spasms and weakness. Potential for respiratory problems: related to weak chest muscles and reduced lung capacity. Self-care deficit: potential for inability to perform ADL related to spasms, tremors, weakness, paresis, or paralysis, secondary to sensorimotor deficits. Potential for injury: related to increased levels of fatigue, joint and muscle weakness. Sensory alterations: related to atrophy of muscles. Pain: related to muscle spasms or joint pain, secondary to weakness in outlying protective muscles. Potential for altered family functioning: due to magnitude, prognosis of and adjustment to disease. Potential for altered cognitive processes: related to “mental fatigue”.

This material is provided free of charge. The materials on these pages do not claim to provide comprehensive explanations or prescriptions for treatment of disabling conditions. If you would like to take this course for credit and receive supplementary materials for completing the course, please contact Community Rehabilitation Studies at the University of Calgary: spcran@acs.ucalgary.ca Ph: 403-220-3543

All media developed exclusively by Media Learning Systems except where noted.

All materials © copyright Community Rehabilitation Studies, The University of Calgary

For use of the materials, contact the Community Rehabilitation office or the course instructor.

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Tom Walters Letter from California

Tom Walter’s “Letter from California”

COMING BACK FROM HELL

OR

Something Worse than PPS?

The past six months or so I’ve not been able to keep up with answering correspondence, E-mails and telephone calls; visiting friends and relatives; sending out appropriate greeting cards on a timely basis; putting together pages for the local support group newsletter; or just about anything else I’ve been doing during the past couple years of disability from Post Polio Syndrome.

About the only thing I’ve been able to continue regularly is the Tuesday night self-help support chat we have on America Online. And I’m so far behind on everything else I won’t ever catch up.

Around Thanksgiving last year, I came down with a terrible head cold that lasted about two months and took me out of the usual round of end-of-the-year holiday activities and festivities. Then the day after Valentine’s, 1998, I started having new pains in my shoulders. I remember buying a discounted plant late in the day and re-potting it when I got home. So I figured I may have “overdone” it.

But after three weeks of babying and protecting my shoulders, the pain and stiffness were intensifying and spreading to my neck and upper arms — pain much more excruciating than I had experienced so far from PPS, even though I was now consuming massive quantities of narcotic pain medications: pain that prevented me from rolling over in or sleeping in a bed and allowed me little uninterrupted sleep in my rocker-recliner, pain that kept me from driving my van.

I began wondering about torn rotator cuffs, pinched nerves, brain or spinal cord tumors. Or had I slipped to a new, lower level of functioning because of rapidly-advancing PPS? I started using the local County wheelchair-lift equipped bus system and the handicapped “Dial-A-Ride,” had a man in to help out with routine chores one day a week (in addition to the weekly gardener and bi-weekly cleaning ladies) and signed up for delivery of “Meals on Wheels.”

Time to seek medical evaluation. My Primary Care Physician ordered x-rays of the neck and shoulders which were unremarkable. Then how about some blood tests? Most everything “within normal limits” except for the “sed rate.” An elevated Erythrocyte Sedimentation Rate (ESR) can indicate inflammation in the body, but not the cause or location of that inflammation.

By the time I saw the Orthopedist who’s been treating my PPS two months after this started, pain and stiffness had spread to my lower back and “better” right hip and thigh. It seemed that my entire body was involved, except for my “worse,” atrophied left leg. But he didn’t think this new additional pain and stiffness was related to PPS.

More blood tests to eliminate autoimmune and connective tissue disorders. The pattern and extent of pain, weakness and stiffness and the elevated “sed rate” are characteristic of Polymyalgia Rheumatica (PMR), a rare form of arthritis usually seen in 70-year-old-plus women and also known as Anarthritic Syndrome or Arthritic Rheumatoid Disease that involves an inflammation of the muscles or joints or arteries.

Now three months had gone by and I see a Rheumatologist. He confirms the diagnosis and starts me on a course of oral Prednisone.

Prednisone is a steroid that can have a lot of negative side effects, including thinning of the skin and bones, suppression of the immune system, muscle weakness and lethargy, mood swings, weight gain and fluid retention and more. But its the only known effective treatment for Polymyalgia Rheumatica. The course of treatment usually lasts six months to two years when the “sed rate” returns to normal and the pain and stiffness subside.

(In the May 15, 1995, Annals of the New York Academy of Sciences, Dr. Dalakas reported his double blind, placebo-controlled trial of high-dose Prednisone for the treatment of PPS conducted at the National Institutes of Health in Bethesda MD. No further studies of the drug are planned in PPS because patients exhibited substantial undesireable side effects and the lack of significant efficacy to show any benefit for general fatigue or muscle fatigue, although a few patients did feel it had helped.)

The past week I’ve been having some “ups and downs” in terms of energy, fatigue and pain, the drug treatment has me back on the road to recovery, with renewed high hopes of returning eventually to function at or near levels before the onset of this rare disorder.

And I’ll also be starting soon one of the newer drugs for osteoporosis prevention and treatment (Fosamax tablets or Miacalcin Nasal Spray).

The cause of Polymyalgia Rheumatica is unknown, but may be a virus or genetic. It does not seem to be related to Polio or PPS. In a casual conversation about this, Dr. Susan Perlman of UCLA recalled only about two cases in 500 polio patients she’s seen over the years in the Clinic there. And Dr. Halstead noted that he probably sees less than one case a year among his patients at the National Rehabilitation Hospital in D.C.

Tom Walter

tomincal@aol.com

28th May 1998

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Non Fatiguing General Conditioning Exercise Programme

NON-FATIGUING GENERAL CONDITIONING EXERCISE PROGRAM

Stanley K. Yarnell

Since 1981, 711 patients have been seen in the Bay Area Post-Polio Clinics. The most frequently complained of symptom was unaccustomed fatigue (79%). The cause of fatigue may be multifactoral, but it has been our observation that a significant number of polio survivors complaining of fatigue (close to one-third) can date the onset of their profound fatigue to the period after illness, surgery, or trauma. This suggests that deconditioning of the muscle fibers of the delicate old polio motor units is a significant contributing variable.

Furthermore, we have noted that polio survivors generally take three to four times longer to convalesce from surgery, illness, or trauma than individuals who have a full compliment of anterior horn cells. The non-fatiguing general conditioning exercise program using the 20% rule was designed to help restore stamina or endurance for those individuals who have continued to be bothered by profound fatigue following surgery, illness, or trauma.

The program begins by determining the polio survivors maximum exercise capability with the help of the clinic physical therapist. The type of exercise can be in a pool or on dry land using an arm ergometer or an exercise bicycle, depending on the individual’s abilities and preferences. If the individual prefers swimming, the maximum number of laps that the patient can swim is used as a maximum exercise capability. If the survivor has considerable residual weakness and is only able to swim one lap in half an hour, then the amount of time actively swimming can be used as a maximum exercise capability rather than the number of laps.

Having established the maximum exercise capability, the polio survivor is instructed to begin his aerobic swimming program at 20% of the determined maximum exercise capability. He can swim three to four times per week at that level for one month and then he is instructed to increase by 10%. For example, if an individual is able to actively swim in a pool for half an hour, then one-half hour would be his maximum exercise capibility. He would begin swimming just six minutes per session three to four times per week for a month before increasing the amount of time actively swimming to nine minutes three to four times per week for another month. Then he would increase by 10% once again so that he was actively swimming 12 minutes per session three or four times per week for another month, and so on. After three to four months our patients have reported that they feel an increase in their general stamina or endurance.

Alternatively, if an arm ergometer or exercise bicycle is used, the same basic principle can be utilized, calculating distance pedaled or time spent actively peddling the ergometer or exercise bicycle. The individual begins his aerobic or non-fatiguing general conditioning exercise program at 20% of maximum exercise capability three to four times per week for one month before increasing the distance by 10%. He continues with that level of activity for another month before increasing by another 10% so that he is exercising at 40% of maximum exercise capability. For example, if an individual is able to pedal an exercise bicycle for one mile or is able to actively pedal the bicycle for up to 20 minutes, then that is his maximum exercise capability. He is instructed to begin his exercise program at one-fifth of a mile (or if time is used, then four minutes is the beginning exercise time). This is repeated three to four times per week for an entire month before increasing the distance pedaled to one-third of a mile or six minutes. Our patients are encouraged to stick with that for an additional month before increasing by another 10%, and so on. Individuals are cautioned to stop if they become fatigued during their exercise program, or if they experience pain or achiness in their muscles. Most polio survivors are able to continue increasing their exercise program to nearly the maximum exercise capability though it clearly would take a full nine months if this program were strictly followed. Coditioning or aerobic exercise at these submaximal level allows the individual to regain a healthier sense of stamina without damaging delicate old motor units. Additionally, it is imperative to incorporate the concept of pacing spacing within the non-fatiguing general conditioning exercise program. This means that rests are to be taken during the exercise program every few minutes. The 20% rule is sometimes also applied to polio survivors when they are given instructions in a home flexibility and stretching program so that they do not exercise too vigorously. This exercise program can be modified somewhat with the supervision of a physical therapist depending on the progress made by the polio survivor. This program may not eliminate fatigue for all polio survivors, but we have found it effective for those who have a significant element of deconditioning contributing to their sense of fatigue. It has also been quite useful for polio survivors to use as an exercise guideline following surgery, illness, myocardial infarction, or trauma. Stanley K. Yarnell, M.D., Department of Physical Medicine and Rehabilitation; Jill Sweringen and Lizanne Pastore, Supervising Physical Therapists, Post-Polio Clinic ST. Mary’s Hospital and Medical Center, San Francisco, California

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