About post-polio syndrome
- Did you have polio?
- Are you a friend or relative of someone who had polio?
- Are you wanting to know about immunizing your child?
Then there are some things you need to know....
P.P.S. in under two minutes.
by David Graham, revised by Elinor Young
Have you tried to explain post-polio syndrome to a friend, then half way through you notice them nodding off? Try this two minute drill.
Our brain communicates with our muscles through the nerves. Polio destroys these nerve cells causing our muscles to die.
The beautiful thing about nerves is that they help each other. When one goes down others help out, so a person can lose many nerve cells and not experience much dysfunction.
Most polio survivors have been living in this state of fewer cells for years. If they were very young when they contracted polio they may have grown up thinking this was normal.
All people's nerve cells die off with age. For the normal person, having many nerve cells, this is not a problem. For those of us that have been living with a reduced number of nerve cells, this can result in a variety of symptoms including weakness, fatigue and pain.
Jacqueline Perry, MD
Rancho Los Amigos Medical Center
Downey, California
Acute poliomyelitis is a viral infection of the anterior horn cells within the spinal cord causing varying degrees of muscle paralysis while sensation remains intact. Poliomyelitis destroyed some of the muscle fibers and thus the remaining musculature has had too function at a higher demand than normal. Patients improved their function through substitution of other muscles or using passive tendon tension by alternate posturing. Substitution was exquisitely effective. It also introduced the potential for overuse of remaining muscles.
The current post-polio syndrome is characterized by loss of strength, increased fatigue, and muscle or joint pain. There is strong experimental evidence supporting the loss of muscle fibers through damage from overuse, edema, inflammatory cell and fiber degeneration. Muscle pain is a sign of injury. The key point is that most patients with loss of function are not suffering from inactivity. Exercise can make only a small contribution. The primary therapeutic program is to reduce the strain on these muscles by lifestyle modification or assistive equipment. If strain can be relieved, there has been mild improvement of strength and significant improvement of function.
Frequently Asked Questions about Post-Polio Syndrome
by Dave Graham
#1 How do I know if I have post-polio syndrome?
The diagnosis is one of exclusion. Other conditions that have similar symptoms must be ruled out. These include Fibromyalgia, M.S., Myasthenia Gravis, ALS (Lou Gehrig's Disease), Parkinson's, tumor, etc. Having post-polio syndrome does not rule out the possibility of also having another disease though. A physiatrist or neurologist familiar with PPS can perform appropriate diagnostic tests.
#2 My regular doctor doesn't have a clue about PPS.... who do I see?
Polio Outreach of Washington State publishes a list.
#3 Am I going to die from PPS?
Everyone's going to die someday, but not from post-polio syndrome.
#4 What About Social Security and disability insurance companies?
Again, the support group is the place to go for this information. Many people can offer their experiences and the library has some great articles on the topic.
#5 What changes can I expect?
As you experience decreased strength, energy, and function, and a higher level of pain, you can expect to have to make some lifestyle changes. You may also confront some of the other common PPS symptoms (twitching, "tired brain," etc.) However, just as the severity of symptoms varies, so also the number and magnitude of lifestyle changes differs from person to person. The Polio Outreach library can give you more specifics. Dr. Mavis J. Matheson, MD, says, "The way we see ourselves may interfere with our ability to change. One approach to the whole issue of activity is to be kind, positive, and gentle to ourselves."
The National Institute of Neurological Disorders and Stroke has a Post-Polio Syndrome Fact-Sheet site containing a lot of basic PPS information. Polio Experience Network disagrees with some of their conclusions, including the statement that "PPS is caused by the death of individual nerve terminals in the motor units that remain after the initial attack of polio." (There is evidence that the nerves are, in fact, intact. See "Acute Anterior Poliomyelitis, Some Observations.") Though some of the "facts" presented on this page are old and therefore suspect, it can give you an over-view of the subject.
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Revised: August 19, 2004.
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