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I don't know anything about polio. What is it anyhow?

"During the first half of the 20th century, the grim terror of crippling polio epidemics regularly, though randomly, swept across the United States and Canada (and most of the industrialized world) with increasing ferocity, suddenly leaving large numbers of otherwise healthy children, and adults, permanently disabled, or dead due to paralysis of their breathing muscles." So writes Dr. Christopher J. Rutty, Ph.D. for Health Heritage Research Services. After you finish here, read his brief, but thorough article for more information. http://www.gene.com/AE/arc/polio.html

Another good source of information on infectious polio can be found at Health Answer's web site. It includes discussion of symptoms, treatment, and prognosis for different types of polio.

http://www.healthanswers.com/database/ami/converted/001402.html


OK, polio is licked, isn't it? So what is Post-Polio Syndrome?

Polio infections may soon end (though there is still some question about possible new epidemics developing from "wild" polio virus loose in the environment if vaccinations are ever abandoned.) Post-Polio Syndrome (PPS) occurs about 25 to 30 years after the original polio illness, when polio survivors experience new symptoms of weakness, pain, pathological fatigue, additional paralysis, and breathing and swallowing problems. These symptoms are caused by a gradual wearing out of already weakened and damaged nerve cells and may appear even in those polio survivors who had apparently made a complete recovery from the original polio and were not left paralyzed. PPS is not caused by an active virus and is not contagious.


What can I do about pain from Post-Polio Syndrome?

Here are some helpful tips assembled from the Internet Polio Mail List by our friend Tom in California ( This e-mail address is being protected from spambots. You need JavaScript enabled to view it ):

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. Jacquelin Perry, with over 40 years at the polio clinic of Rancho Los Amigos Medical Center in Downey, California, says we should exercise normal (if any) muscles normally but not do anything that causes PPS-affected muscles pain or 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; postural improvement - Alexander, Feldenkrais, etc.

5. Alternative therapies such as acupuncture or electro-acupuncture to the ear lobe; magnetic field therapy.

6. Dietary supplements such as ginger, pycnogenol, cayenne pepper, glucosamine and chondroitin sufates, calcium and magnesium.

7. Treatment of sleeping difficulties, i.e., insufficient amount of deep, Stage IV (REM) 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 antidepressant prescription drugs -- Elavil (amitriptyline) -- an anti-depressant of the tricyclic type -- is the first choice in drug therapy by some PPS specialist doctors for those with PPS pain AND trouble sleeping, at dosages less than would be used for clinical depression. But a lot of us don't tolerate it well. And for those who don't tolerate it (and also those who DON'T have sleeping problems), one of the SRUB class of anti-depressants (Serotonin ReUptake Blockers) such as Zoloft or Paxil -- also in smaller doses than would be used for clinical depression -- may be of help.

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 and pre-cursors; Melatonin.

14. Generic Tramadol Hydrochloride, recently available in the U.S. as the prescription drug Ultram and in Mexico as Tradol, is an artificial opiate "pain pill" that appears to be safer and without the negative side effects of narcotic pain medications. Some doctors, though, are questioning claims that it is not addictive.

15. LISTEN TO YOUR BODY !!!


Where can I find a polio doctor or clinic in my area?

This is a major problem for polio survivors since there are few doctors who are familiar with polio and the late effects of PPS. Often the ones who are most likely to be knowledgeable are Physiatrists. It will take persistence in checking with hospitals, clinics, and other medical organizations in your area to find the right person for you.

We have a page linking to several excellent online directories of support groups, doctors, and clinics besides listing some Wisconsin medical practioners our members have found helpful. While no endorsement is implied by PPRG, this is an excellent place to start. If you are still having trouble, we will gladly help you to find someone in your area. Just This e-mail address is being protected from spambots. You need JavaScript enabled to view it .


What can I do to help others with Post-Polio Syndrome?

Hey, that's a great question! Thanks for asking.

Financial assistance to PPRG or your local group is always greatly appreciated. Our funding sources are very minimal. But, it is even more important to help others to know about PPS: doctors, friends and family who may have had polio, news media, political leaders, and anyone else who is interested. The more this is known and understood the better it will be for polio survivors.

Also, when you or someone you know starts to experience the symptoms of PPS, take it seriously and take action. The longer one delays, the more likely and more quickly the symptoms will become worse. There is no known way of reversing the symptoms once that happens.


I've got some more questions.

Then you'll want to see our More Frequently Asked Questions page!

You can also call us on our VoiceLine, write us a letter, or e-mail us.

We'll do all we can to get you the answers you need.