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Post Polio syndrome

Post-polio syndrome (PPS) is a condition that frequently affects survivors of poliomyelitis, a viral infection of the nervous system, after recovery from an initial paralytic attack of the virus. Typically the symptoms appear 20-40 years after the original infection, at an age of 35 to 60. Symptoms include new or increased muscular weakness, pain in the muscles, and fatigue. more...

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Post-polio patients are also often noted to have memory problems, various cognitive difficulties, and an increased sensitivity to anesthetics. Weight gain is also a frequently noted symptom, though it's hard to tell if this is due to the disorder directly or due to the decreased level of physical activity that usually accompanies the disorder.

Fatigue is often the most disabling symptom, as often even slight exertion can produce disabling fatigue and also increase other symptoms.

Diagnosis of post-polio syndrome can be difficult, since the symptoms are hard to separate from the original symptoms of polio and from the normal infirmities of aging. There is no laboratory test for post-polio syndrome, nor is there any other specific diagnostic, so diagnosis is usually a "diagnosis of exclusion" where other possible causes of the symptoms are eliminated.

The precise mechanism that causes post-polio syndrome is unknown. It shares many features in common with myalgic encephalitis, a form of chronic fatigue syndrome that is apparently caused by viral infections, but unlike those disorders it tends to be progressive, and can cause tangible loss of muscle strength.

One theory of the mechanism behind the disorder is that it is due to "neural fatigue" from overworked neurons. The original polio infection generally results in the death of a substantial fraction of the motor neurons controlling skeletal muscles, and the theory is that the remaining neurons are thus overworked and eventually wear out.

Another theory holds that the original viral infection damages portions of the lower brain, possibly including the thalamus and hypothalamus. This somehow upsets the hormones that control muscle metabolism, and the result is a metabolic disorder similar to mitochondrial disorder that causes muscle pain and injury (via rhabdomyolysis) and also causes the fatigue.

Treatment generally is limited to supportive measures, primarily leg braces and energy-saving devices such as powered wheelchairs, plus pain relievers, sleep aids, etc. However, some post-polio patients claim to have found significant relief using large amounts of various food supplements, primarily L-carnitine, CoQ10, and d-ribose.

Diagnosis

Doctors arrive at a diagnosis of PPS by observing the patient and asking about symptoms, and by excluding other disorders. PPS may be difficult to diagnose in some because it is hard to determine what component of a neuromuscular deficit is old and what is new. Health professionals say that the only way to be sure a person has PPS is through a neurological examination aided by other laboratory studies that exclude all other possible diagnoses. Patients must visit the doctor periodically to establish that their muscle weakness is progressive.

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Steps to Relief of Post Polio Syndrome
From Accent on Living, 3/22/00 by Peter C. Vincent

Is relief available for the symptoms that are brought on by post-polio syndrome? Can the 120,000 to 240,000 post-polio syndrome (PPS) persons be free from the pain, weakness, fatigue and breathing discomforts? Steps to relieving these symptoms are:

* Management of Muscle Weakness

Polio survivors will know when it is time to contact a physiatrist as symptoms of PPS begin to manifest. The doctor will evaluate new muscle weakness and suggest management. Support utilizing crutches, canes, braces, walkers, wheelchairs, grab bars, elevated seats, arm rests, and motorized scooters to protect new weakness might be recommended. The doctor will advise pacing yourself which encompasses switching jobs, retiring, creating rest breaks, moving to an accessible home with a user-friendly environment, and just changing priorities and eliminating non-essential activities.

Once new weakness is stabilized and a period of functioning without excessive pain, fatigue, or additional loss of strength has been completed, the doctor will suggest a program of mild exercise. The PPS patient will probably begin with gentle stretching, yoga, or aerobics, and later, weight lifting, all supervised by a physical therapist experienced with post-polio syndrome. "After exercising, rest the tired limbs until strength rebounds; depending on the degree of tiredness, expect muscle restoration to return within one to seven days," my rehabilitation doctor said.

"Lastly, be aware that stress is the second leading cause of PPS symptoms," according to the Post-Polio Institute. Being a polio survivor, I will vouch that fatigue leads to stress and, in regard to mental tension, is increased proportionally to the cumulation of distress mustered in the PPS victim.

* Management of Fatigue

Fatigue occurs every day, progresses, and peaks by noon, so before weariness changes to debility inaugurated by unwittingly overtaxing the body and expending energy which is no longer available, rest by taking naps throughout the day. For fatigue launched by PPS, change to an energy saving lifestyle which includes elevating household furniture, using electric scooters for shopping, buying items from mail order catalogs, utilizing accessible transportation, buying stamps by mail, using handicapped parking, drive-in banks, ATM's, and pharmacies, voting with absentee ballots and employing workers to assist with home or personal care.

* Management of Pain

Dr. Lauro Halstead, author of Managing Post-Polio Syndrome, says, "Management of pain involves supporting weak muscles with assistive devices, utilizing household adaptive equipment, rest, heat treatments, ice packs, massage, stretching, painless electric current (TENS), lifestyle modifications, avoidance of stress, and medications."

* Management of Respiratory Complications.

Dr. Halstead says, "Patients with respiratory complications, often accompanied with scoliosis and weak chest and diaphragm muscles, are treated by a pulmonologist who remedies the discomfort with inspiratory positive pressure, which is sometimes combined with frog breathing which is projecting a "gulp" of air past the vocal cords into the lungs. PPS patients with supplemental coughing can hamper frog breathing, so these individuals are helped by having the airway secretions cleared by manual or mechanical means of chest percussion when abdominal muscles are weak.

"Other individuals requiring negative pressure in their lungs are benefitted with an iron lung, porta-lung, chest shell, rocking bed, or abdominal pressure ventilator," says Dr. Halstead.

* Management of Swallowing Problems

"Speech and language pathologists from swallowing disorder clinics specialize in diagnosing and treating difficulties in swallowing or dysphagia and suggest that PPS patients, when eating, change the consistency of their diet to substances that can be imbibed more easily, turn the head to one side, tuck the chin, alternate food and liquid, avoid eating when fatigued, ingest smaller, more frequent meals, and never swallow with the head thrown back or while talking," states Dr. Halstead in his book.

* Management of Cold Intolerance

"Regardless of the season or amount of clothing worn, as a PPS patient, you are probably affected by cold intolerance," says a specialist with The Polio Society. I will vouch that cold intolerance is dealt with, primarily, by utilizing your own judgement, multiple layers of clothing, massages, local heat and immersion into hot tubs are useful against an ineffective blood flow to affected limbs. Additionally, some patients are aided by wearing nylon panty hose, "Teddy" hose or long underwear. An electric blanket or heated mattress cover and socks worn during sleep periods are helpful for cold intolerance.

* Prognosis (Summary)

Yes, relief is available for the polio survivor who is or will be afflicted with PPS. For the majority of persons who find the symptoms of the newly discovered disease, PPS, haunting, there is abounding optimism. With persistence and self-discipline, patients who properly manage their PPS can improve, or keep from regressing, with a combination of lifestyle modifications, bracing and pacing, various exercise programs, medication, plenty of rest and, if possible, avoidance of stress.

Sources for information:

Managing Post-Polio--A Guide to Living Well with Post Polio Syndrome, edited by Lauro S. Halstead,M. D., NRH Press, Publication office, 102 Irving St. NW, Washington, DC 20010.

http:// members.aol.com/harvestctr/pps/polio.html.

Additional Reading Agre, JC, Rodriquez, AA, Harmon RI, Strengthening Exercise Can Improve Function in Post-Polio Subjects without Detectable Adverse Affect Upon the Surviving Motor Units or Muscle. Abstract. Arch Phys Med Rehab. 1995: 76: 1036.

Bernstein,S, ed. Explorations in Group Work: Boston University, 1962.

The Late Effects of Poliomyelitis--An overview. Questions and Answers about the Post-Polio Syndrome. A publication of the International Polio Network, 4207 Lindell Boulevard, #110, St. Louis, MO 63118-2915; (314) 534-0475.

Auroy, Y, Narci, P, Messiah,A, et al. Serious Complications Related to Regional Anesthesia: Results of a Prospective Study in France! Anesthesiology, 1997; 87:479-486.

Trojan, DA, Cashman, NB. Current Trends in Post-Poliomyelitis Syndrome. New York, NY: Milestone Medical Communications, 1996.

Halstead, LS, Grimby, G. eds. Post Polio Syndrome. Philadelphia: Hanley and Belfus, 1995.

COPYRIGHT 2000 Cheever Publishing, Inc.
COPYRIGHT 2001 Gale Group

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