What is Post-Polio Syndrome?
Post-Polio Sequelae (PPS) are the “sequel” to having had polio. It occurs in as many as 76% of survivors of both paralytic and non-paralytic polio some 20 to 40 years after they had polio.
What are the symptoms?
- new fatigue
- muscle weakness
- joint and muscle pain
- cold intolerance
- sleep, breathing and swallowing difficulty
What causes PPS?
PPS are caused by overuse abuse. Nerves that were damaged by polio and had sprouted have been overworked for 40 years and can no longer take the strain. So too, overworked muscles ache and joints hurt after decades of doing too much work with too little muscle support. A recent study found that motor nerves in polio survivors who have muscle weakness are actually dying from overuse.
Is PPS a progressive disease?
No. PPS is neither progressive nor a disease. PPS are just the body growing tired of doing too much work with too few damaged and overworked neurons.
How is it treated?
Since PPS symptoms are caused by the nervous system equivalent of plugging too many appliances into one over-loaded electrical outlet, polio survivors simply have to unplug some of the appliances. Polio survivors must decrease the overuse to stop the abuse of their damaged nerves, weakened muscles and painful joints.
The worst-case is that patients who stop the overuse abuse will have their PPS symptoms plateau. However, when survivors start taking care of themselves, the overwhelming majority have noticeable decreases in fatigue, weakness and pain.
Since PPS symptoms result from too many “appliances” being plugged into an over-loaded nervous system, muscle strengthening exercise would be like plugging a dozen additional appliances to an already over-loaded circuit. While stretching exercise can be helpful, pumping iron and feeling the burn means that polio-damaged neurons are burning out. Also, polio survivors typically can’t exercise the way others do to condition their hearts or prevent osteoporosis.
What can friends and family do to help?
Polio survivors have spent their lives trying to look and act normal. Using a brace they discarded 30 years ago and reducing their typically super-active Type A daily schedules is both frightening and difficult to do. So, many friends and family need to be supportive of life-style changes, accept survivors’ physical limitations and new assistive devices. Most importantly, friends and family need to be willing, when asked, to do the physical tasks polio survivors probably could do, but should not do any longer.
Friends and family need to know everything about PPS and say nothing. Neither gentle reminders nor well-meaning nagging will force survivors to use a new brace, sit while preparing dinner or rest between activities. Polio survivors must take responsibility for taking care of their own bodies and ask for help when its needed.
(Written by Dr Richard L. Bruno, Chairperson of the International Post-Polio Task Force)