San Francisco Bay Area Polio Survivors (SFBAPS)

Poliomyelitis (POLIO) Explained

Acute polio: - a viral disease that enters the body through the mouth and resides in the gastrointestinal tract, and in some cases, becomes blood-borne and invades the central nervous system (CNS). The manifestations of the infection can range from an inapparent infection to a severe paralytic illness. There are three distinct types of poliovirus, and infection by one type does not confer immunity against infections by the other two types.
Abortive polio: -a brief systemic illness often limited to one or more of the following symptoms: sore throat, headache, vomiting, and fever, in which clinical or laboratory signs pointing to CNS involvement fail to develop.
Paralytic polio: - a major illness in which severe muscle weakness, or paralysis of one or more muscles, develops. Location of paralysis depends on where the virus caused injury or death of motor nerve cells in the spinal cord. (Spinal polio affects muscles of legs, arms, and back. Also affected may be muscles of thorax, including intercostals, and diaphragm with its motor nerve cells located just below the brainstem. Bulbar polio results from paralysis of muscle groups innervated by cranial nerves, including those of soft palate and pharynx, face, tongue, and paralysis of respiratory center of the brain.)
Nonparalytic polio: - an example of major illness with involvement of the CNS, as manifested by spinal-fluid changes or appropriate clinical signs, such as fever, headache, vomiting, neck, back, trunk, or limb pain, and stiffness of neck or back, but in which acute or residual muscle paralysis is not readily apparent. Note: "New weakness is the cardinal symptom of PPS. The new weakness is located in muscles previously affected by polio as well as in muscles believed to be unaffected by the original illness. At first glance, the phenomenon of ‘unaffected’ muscles becoming weak seems contradictory but, in fact, is well known. Usually, it means that the polio was so mild in those muscles at the time of the original illness that the individual, as well as health care professionals, was unaware of any polio involvement in those particular limbs. However, there was enough loss of motor neurons that after many years of overuse, new weakness developed." Further, the long-term damage to the neurons carrying electrical impulses from the brain to muscles make most traditional treatments prescribed for muscle weakness counterproductive. They simply add to the wear and tear.

Facts about Polio/Postpolio

Polio is a neurologic illness that lasts a lifetime, a chronic disorder that manifests its late effects throughout the entire body without regard to the type of polio originally diagnosed or the extent of acute polio residual or recovery.
Worldwide there are 20 million polio survivors, seven percent of the world's population.
In North America there are an estimated 1.8 million polio survivors, and half are in their forties, fifties and sixties. (Compared to the 2000 U.S. Census, that 1.8 million is more than double the population of the county of San Francisco.)
As early as 1875 medical literature reported cases of polio's late effects, but medical treatment and proper management of those effects were unknown until the last two decades.
Medically, the polio survivor's body is 20 years older than its chronological age.
Polio's late effects occur in at least 75% of paralytic and 40% of non-paralytic polio survivors about 15-60 years after the poliovirus attack.
Only about 20% of medical providers presently have knowledge about postpolio.

For more detailed information, click on the following documents.

Information about the Late Effects of Polio
http://www.post-polio.org/ipn/aboutlep.html
... for polio survivors ... for families and friends ... for health professionals

The Late Effects of Polio: An Overview
http://www.post-polio.org/ipn/lep.html

Polio & Post-Polio Fact Sheet ©
http://www.post-polio.org/ipn/fact.html
POST-POLIO SEQUELAE: True Answers for Friends and Family ftp://members.aol.com/harvestctr/Library/ff.html

CRITERIA FOR DIAGNOSING PPS

Prior episode of polio with residual motor neuron loss (which can be confirmed through a typical patient history, a neurological exam, and, if needed, an EMG exam)
A period of neurologic recovery, followed by an interval (usually at least 15 yrs) of neurologic and functional stability before onset of new problems.
Progressive (gradual or abrupt onset) new weakness or abnormal muscle fatigability (decreased endurance or function), with or without generalized (excessive) fatigue, muscle atrophy, or pain (muscle and/or joint))
Exclusion of medical, orthopedic, or neurologic conditions that might cause these symptoms.

COMMON SYMPTOMS OF PPS

Unaccustomed fatigue - either rapid muscle tiring or feeling of total body exhaustion.
New weakness in muscles - both those originally affected and those seemingly unaffected
Pain in muscles and/or joints.
Sleeping or breathing difficulties
Decreased ability to tolerate cold temperatures.
Functional decline in activities of daily living such as walking, bathing, shopping, hobbies, etc.
Voice, swallowing, or esophageal difficulties
Depression/anxiety

GOOD MANAGEMENT OF POLIO'S LATE EFFECTS

The Golden Rule for PPS
"If anything causes fatigue, weakness, or pain, DON'T DO IT!"
(or do a lot less of it)

Polio survivors should examine their work and home daily schedules, and modify, if necessary, the intensity and timing of activities. Utilize appropriate energy-saving techniques and equipment. Set priorities. Decide what is truly important. Learn to PACE yourself! Plan activities ahead and plan time for recovering from them. Heed your body's warning signals. Work smarter, not harder.
There is no more time to waste!

PREVENTING OVERUSE IS THE KEY!

'Conserve' to 'Preserve'

Many polio survivors have been pushing beyond the capacity of their polio-damaged muscles. They have been overcompensating, overachieving, and overusing weakened muscles. It is time to look at LIFESTYLE and think MODERATION, CONSERVATION, and COMMON SENSE. Failure to do that causes and advances both neuromuscular and musculoskeletal disorders in polios. For good management of PPS, polio experts at national and worldwide polio conferences advise the following:

Listen to your body; heed its warnings.
Pace yourself. Slow down. Plan ahead.
Prioritze activities, commitments and desires. Do only that which your energy and muscles allow without fatigue, pain, spasm or fasciculation.
Do not over exercise; the "no pain, no gain" theory does not apply to polio survivors!
Increase flexibility by stretching muscles.
Do not overuse; avoid activities causing fatigue lasting more than ten minutes.
Avoid activities that cause pain.
Rest when you are tired; stop for 15-30 minutes rest when needed, perhaps several times a day and before experiencing fatigue.
Avoid or reverse weight gains. Eat breakfast that includes protein. Eat protein 2-3x/day.
Do not smoke, drink, or take drugs that interfere with respiratory function or reduce coordination.
Use medications cautiously and with your physician's knowledge; be aware of medications contraindicated for polios.
Exercise caution when taking anesthetics.
Carry or wear a "medical alert" identifying breathing and swallowing problems, cold and medication sensitivities, proper body positioning for you, etc.
Have the best body positioning and support while awake and asleep.
Do not use muscles in one position for long; change positions often to lessen fatigue and stiffness.
Avoid stress, both physical and emotional.
Treat respiratory illness early. (Many polios have subclinical pulmonary distress from weak breathing muscles that is often undetected without proper neuromuscular pulmonary function tests, sleep studies, blood oxygen tests. Often there is carbon dioxide retention problem and supplemental oxygen may be life-threatening. The distress may cause complications when undergoing surgery or experiencing other illness. Get baseline pulmonary tests and evaluation by a pulmonary physician experienced with treating neuromuscular disease patients.)
Make full and regular use of best assistive devices & DME (durable medical equipment).
Educate yourself, your family, and your health professionals about postpolio and your needs.
Discuss problems and opportunities with others at postpolio support groups.

Awareness of the Late Effects
Few health professionals understand or recognize polio's late effects (a.k.a. "postpolio syndrome" or "postpolio sequelae" or "postpolio progressive muscular atrophy" or "postpolio muscular dysfunction") caused by daily wear and tear on neurons weakened years ago by the disease or heed its cautions. (See SFBAPS' 2003 Survey results which are typical in communities throughout the United States.)

Keep in mind that paralysis occurred only in a very small percentage of polio cases. Many who contracted polio never knew they had polio or thought they had only a very mild case from which they fully recovered. Often these people went undiagnosed because they only experienced flu-like symptoms, including fever, headache, sore throat and muscle pain. Although the aches disappeared, the hidden damage to the neurons remained and these people are now struggling to manage the late effects of a disease they never knew they had. Many polio survivors now realize that the polio virus they thought affected only a specific part of their body, if at all, actually affected the entire body and the late effects of polio can and does exhibit itself in areas previously seemingly unaffected.

Few health professionals understand "The Late Effects of Polio" or heed its cautions. (See SFBAPS' 2003 Survey results which are typical in communities throughout the United States.) For proper medical care, polio survivors in particular must become experts about polio's late effects and be prepared to advocate that and their special needs and risks in medical treatment.

It is important that polio survivors have complete general medical and neuromuscular evaluations by providers knowledgeable about polio and its late effects to determine if the Late Effects are being experienced and to what extent and proper treatment. For SFBAPS members, we have a list of polio experts and other polio-knowledgeable providers in the SF Bay area.

Social Security Administration now recognizes polio's late effects as a disability and has issued criteria for evaluating the ability of polio survivors to obtain or continue employment. See "Policy Interpretation Ruling SSR 03-1p Titles II & XVI: Development and Evaluation of Disability Claims Involving Postpolio Sequelae", effective July 2, 2003, SSA's Program Operations Manual System (POMS) regulation DI 24580.010. Full text of this new ruling is online at http://www.post-polio.org/ipn/di245801.html and http://www.ssa.gov/regulations/articles/ssr-03-1p.htm.

SFBAPS 2003 Survey Results