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.
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.
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