Cause of PPS: Some of What is Known and Not Known
Eddie Bollenbach

Revised (by author) from a Post to the Post-Polio-Med Email List With Permission

Eddie Bollenbach Bio & Picture

Date: Sat, 3 Feb 2001 14:15:01 -0500
Subject: Re: [PPM] PPS Question
From: "Eddie Bollenbach" <edward.bollenbach @ snet.net>

I know that people with PPS are losing end fiber attachments to muscle fibers. Everybody knows that. I believe we can say, at this point, that this is in the realm of fact and not theory. The end fibers of a neuron may be as long as a meter (yard) away from where its nerve cell body is in the anterior horn of the spinal cord. If end fiber attachments to motor nerves are lost, or lose functionality, the power and endurance of muscles will decrease. As this occurs the abilities that one possesses diminish. Late Polio Loss is a unique way to lose motor function, bit by bit. It is insidious. Some begin falling, some get exhausted and don't know why, and some experience muscle pain because the remaining functional fibers must do much more work to support daily activities which the individual expects to do without trouble.

So, we have a loss of motor nerve end fibers and overuse will lead to pain or other symptoms. I have no doubt that overuse will damage muscles whether they were affected by polio or not. Will overuse damage the nerves that innervate these muscles? I don't know. If you are sore and fatigued should you rest? Absolutely. Does overuse cause PPS? I have absolutely no idea. No one else does either. But constant overuse of damaged muscles will cause more damage. Increased damage could cause more loss of motor nerve synapses. No PPS sufferer needs that.

There is more emphasis now on exercise in PPS for muscles that work normally and which were not affected by the acute infection. Earlier, such exercise was advised against more often than it is now. I have experienced the benefits of it. But everyone with polio has a different degree of damage and has damage distributed in different areas. So you must be evaluated by a competent physiatrist to be advised properly about your unique situation.

One of the problems that can decrease quality of life is deconditioning. It may be possible to avoid this by using tailored exercise. Did I say exercise sore muscles? No! Did I say exercise muscles that are undergoing a progressive weakening? No!. In my own situation I lost a lot of function, suddenly, in 1984. This transformed me from a walking person with no visible deficit to a motorized scooter. If I stand now I hurt like hell for a week. So I don't. My legs have become much more skinny than they were.

But I have found that in the pool I can kick my legs. I am not using antigravity muscles which were damaged severely during acute polio but I am moving and exercising my legs. I also swim long distances rapidly (at a competitive pace). I've been doing this for more than 10 years and it has only helped me. With manual muscle testing (a blunt instrument) my physiatrist told me this past September that the only clinical weakness was in my right calf. Funny, I have no endurance in other leg muscles and can't stand or walk without getting wiped out. Nevertheless, for me, exercise obviously should not be ruled out as a means of improving function and conditioning. The caveat here is that one MUST be evaluated by a competent physiatrist. I am able to be up all day without significant fatigue. When PPS first reared its ugly mug I had to lie down every couple of hours.

In Summary, overuse produces strained or damaged muscle fibers. You need all the healthy fibers you can preserve. PPS is primarily a disease resulting from nerve end fiber degeneration secondary to earlier damage. There may be many causes and I don't know if overuse hurts nerves, or if so how much it does. Nobody knows this as far as I know.

As for growing nerve cells, I am not encouraged nor do I look for any help in rejuvenating old sclerotic and dead muscle fibers in polio patients. Even if it were possible to get new motor nerves to function in the anterior horn of the cord, they would then have to wend their way down 3 feet, sprout numerous fibers to attach to muscles which will no longer display Cell Adhesion Molecules on their surfaces, and then magically get these fibers to reverse their dead or moribund status. There are also enormous problems involving surface area considerations in large animals, like man, and connections up so the brain could direct movement. My assessment of this issue is the same as it was 7 years ago when Chris Reeve announced he would walk in 5 years. Ironically, his problems, while much more severe than many of ours, would be easier to fix because his end fibers and muscle fiber attachments are theoretically intact. Our problems involve the peripheral ends of motor nerves, gazillions of synapses, and moribund muscle fibers.


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