Re-examining post-polio syndrome

This link—www.ninds.nih.gov/index.htm—is to the National Institute of Neurological Disorders, which has a very informative info page on the devastating post-polio syndrome (PPS).

The medical “facts” proffered by Susan Voorhees are inaccurate [“The Once and Future Sting: Polio Survivors Regroup to Face New Challenge,” Xpress, June 27], and a licensed professional should know better than to misinform the public in this manner. The polio virus specifically attacks the anterior horn cells of the spinal cord. These nerve cells innervate the muscles, and the loss of this nervous innervation causes the typical paralysis that is seen in acute polio. With recovery, the remaining horn cells not destroyed initially pick up the slack by increasing their attachments to the muscles, and by a process similar to hypertrophy. With age, there is a normal loss of these horn cells; those who have had polio have no reserve and begin to suffer a slow and gradual weakening of the skeletal muscles because of lack of nervous innervation. The muscles themselves atrophy from lack of innervation from the nerves, rather than from a direct effect of the polio.

The statement that the muscles “wear out” is ludicrous. Exercise aimed at endurance (walking) as opposed to strength (weightlifting) can be helpful to many patients.

I have treated quite a few patients with post-polio syndrome, and it saddens me when a newspaper of your quality so badly misinforms the public. I think that you should print a correction. On the other hand, kudos for bringing an important issue to the public’s attention.

— Michael Cummings, M.D.
Marion

Writer Brian Postelle responds: In my interviews with Susan Voorhees, she described to me the process by which horn cells overcompensate and are depleted, resulting in post-polio syndrome. Perhaps mistakenly, I chose not to delve too far into those medical details in a mainstream publication, but that omission was mine, not Voorhees’. She did, however, speak to the fact that, without knowing the nature of post-polio, many survivors had overworked muscles that do not recover as expected under normal conditions. Other responses to this article do indicate that it has served as a catalyst for getting the word out about the resource group, and Dr. Cummings’ particular expertise and experience indicate that he would make a valuable resource for the group.

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3 thoughts on “Re-examining post-polio syndrome

  1. coleader

    I think Dr. Cummings’ response to Brian Postelle’s article highlights what a can of worms polio and PPS are. I went to the NIH page he refers to. Below you will see his reference to anterior horn cells in the spinal cord BUT no mention of polio’s initial attack on the brainstem from which the virus ascended and descended. Dr. Richard Bruno wrote about the documentation of autopsy examinations of people who had polio, and that the one and only thing they had in common was a distinct kind of plaque found in the brainstem.

    From the NIH PPS Fact Sheet Cummings referred to: “The poliovirus attacks specific neurons in the brainstem and the anterior horn cells of the spinal cord.”  There is a fair host of things that polio did that are not related to PPS such as the numerous effects of death and damage to the reticular formation in the brainstem and its role in higher levels of brain function, the loss of blood sugar receptors on neurons in the brain because those neurons were destroyed (don’t quote me, but I think 50% of blood sugar is used by neurons in an average brain — it is their fuel), “brain fog” events, circulatory and heightened sensitivity to pain and anesthesia, and other effects and domino effects of the brain attack.  

    I also think that Brian muffed the penning of his interview with Susan and am glad he had the opportunity to respond to the apparently under-informed doctor.   Dr. Cummings is splitting hairs about muscles wearing out and his chosen term, “ludicrous,” is unnecessarily extreme.  What really does strike me as ludicrous, though, is his suggestion that survivors work on endurance by using “walking” as an example (which I did not see on the NIH Fact Sheet).   Perhaps there weren’t any people among his “quite a few” PPS patients who are walking-challenged, but still it’s really hard to imagine he’d not know. Looking around, walking seems to be a common problem for “hard hit” survivors, an aspect common to PPS deterioration.

  2. Penny Bond

    I am a polio survivor with residual paralysis of my left foot, atrophy of my calf muscles and weakness in my thigh. I also have experienced the symptoms of PPS since the mid 80’s. I am a graduate student at WCU in Health Sciences and am doing my thesis on Post-Polio syndrome. I have extensively researched the issue over the last two years in order to conduct the research for my thesis.
    Most researchers agree that 50 to 60 percent of the motor neurons that control contraction of the muscles are destroyed in the initial infection, thus affecting every muscle in the body, regardless of whether or not paralysis is expressed. The remaining 40% of motor neurons, through the amazing adaptive capacity of the body, re-established connections with many of the orphaned muscle fibers, winding up carrying 8 to 10 times the number of connections they were designed to support. This is why many polio survivors were able to recover so much function through the retraining process of Physical Therapy. Researchers believe that after about 35-40 years, these motor neurons begin to die from being overtaxed for so many years. This produces the symptoms of fatigue, new muscle weakness (even in “unaffected” muscles), and pain.
    Rehabilitation researchers I have read say that polio survivors should not try to build strength or endurance as this just exacerbates the stress on the already overloaded surviving motor neurons.They do, however, recommend mild exercise to keep muscle tone and joint flexibility, especially through forms like water therapy. Any exercise program that a survivor undertakes should be supervised by a qualified rehabilitation specialist who is knowledgeable about PPS.
    The “can of worms” of PPS is further complicated by the personality of polio survivors. Dr. Richard Bruno found that those who survived polio tended to be perfectionists who had a compelling “drive” to overcome any obstacle. They had pushed themselves all their lives to achieve as “normal” a life as possible, and when rehabilitation specialists recommended they make lifestyle changes that required they “give in” to their disabling symptoms by resting, stopping when they felt pain, and no longer “push through” obstacles, they resisted and often quit rehabilitation before completing it. Dr. Bruno likened the personality to “Type A” which is often associated with cardiac patients. Type A behavior is characterized by hostility, and in my own experience and that of other polio survivors I’ve known, hostility is not characteristic of those who had polio. My research is to determine if, indeed, there is a “Polio Personality”, and what kinds of personality characteristics are typical of polio survivors. I am hoping my results will add further information for rehabilitation professionals to use in working with this population. If you are a polio survivor and would be interested in participating in this research, please call my office at 684-9299. All data will be confidential and only reported in an aggregate form.

  3. Stephen Ashford

    As an “Alpha-Max” polio survivor of 55 yrs., I find your discussions sobering at best. My con-cern is with mental function, and whether or not PPS is the likely culpret in the case of slow recall of words etc.

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