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Some tips from the collected wisdom of the Internet Polio Mail List

Assembled by Tom Walter

Tom Walter is a Polio Survivor. Up until a few years ago, 30 years or so on from recovering from Polio, he walked unaided with only a slight limp, working and living a normal life. He didn't even know any other people with Polio. He now has difficulty swallowing and breathing and spends most of his days in a wheelchair or propped up in bed. With his laptop computer he collects and dispenses advice and information on post-polio syndrome. Tom, or TominCal as he is known by his email name, is highly regarded and respected as a source of reliable information by the online post-polio community worldwide. In 1997 he was interviewed by Susan Kelleher of the Orange County Register for an article "Polio strikes back". The article is no longer freely available at the Orange County Register site. It can be located via their archive section (using search keywords "polio" and "strikes") but access to the complete text requires a small payment.

LPPN Web Administration.

NUMERO UNO -- "Lifestyle Adjustment" -- The "sine qua non" without which none of the other tips or aids seem to do much good.

That means reducing physical exertion / activity AND mental stress to the level of one's current capabilities.

Dr. Perry, over 40 years at the polio clinic in Rancho Los Amigos Medical Center in Downey CA USA, says we should exercise normal (if any) muscles normally but not do anything that causes PPS-affected muscles pain, weakness or fatigue that lasts more than 10 minutes.

Assuming the person has been thoroughly checked for any other conditions that could mimic PPS symptoms and be treated -- and that any orthopedic anomalies that could be causing pain have been treated -- here's a partial list of some tips that PPSers have reported seem to work for them, alone or in combination:

  1. Moist heat applied to the painful area.
  2. Light massage to the painful area.
  3. Ice packs applied to the painful area.
  4. Chiropractic or osteopathic "adjustment" of neck / back / joints.
  5. Acupuncture; and electro-acupunture to the ear lobe.
  6. Herbal dietary supplements such as ginger, pycnogenol, cayenne pepper.
  7. Treatment of sleeping difficulties, i.e., insufficient amount of Stage IV sleep.
  8. Treatment of breathing difficulties, i.e., insufficient amount of oxygen and or too much carbon dioxide, especially during sleep.
  9. Use of assistive and adaptive aids, as necessary, to reduce stress and strain to muscles and joints; assuring that all body parts that require it, e.g., neck, head, back, shoulders, are properly supported at all times.
  10. For inflammation of muscles / joints -- use of arthritis-type drugs: NSAIDs (Non-Steroidal Anti-Inflammatory Drugs). Over-the-counter types like Aspirin, Ketoprofen or prescription types like Relafen, Voltaren, Naprosyn.
  11. For "nerve" pain -- use of anti-depressant prescription drugs --
  12. Occasional and/or careful use of muscle relaxants such as Quinine or Methocarbamol.
  13. Hormone Replacement Therapy, especially for post-menopausal, post-hysterectomy women and others with lower than normal levels of estrogen, testosterone, thyroid. DHEA, Melatonin.

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Document preparation: Chris Salter, Original Think-tank, Cornwall, United Kingdom.
Document Reference: <URL:>
Created: 6th February 1997
Last modification: 24th May 1999

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