Mia Farrow's Post-Polio Letter
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WHAT ARE POST-POLIO SEQUELAE?
Post-Polio Sequelae (PPS, Post-Polio Syndrome, The Late Effects of Poliomyelitis) are the
unexpected and often disabling symptoms -- overwhelming fatigue, muscle weakness, muscle and
joint pain, sleep disorders, heightened sensitivity to anesthesia, cold and pain, as well as difficulty
swallowing and breathing -- that occur about 35 years after the poliovirus attack in 75% of
paralytic and 40% of ''non-paralytic'' polio survivors. There are about 2 million North American
polio survivors and 20 million polio survivors worldwide. The existence of PPS has been verified by
articles in many medical journals, including The Journal of the American Medical Association, the
American Journal of Physical Medicine and Rehabilitation and The New England Journal of Medicine.
WHAT CAUSES PPS?
PPS are caused by decades of ''overuse abuse.'' The poliovirus damaged
95% of brain stem and spinal cord motor neurons, killing at least 50%. Virtually every muscle in
the body was affected by polio, as were brain activating neurons that keep the brain awake and
focus attention. Although damaged, the remaining neurons compensated by sending out ''sprouts,''
like extra telephone lines, to activate muscles that were orphaned when their neurons were killed.
These over sprouted, poliovirus-damaged neurons are now failing and dying from overuse, causing
muscle weakness and fatigue. Overuse of weakened muscles causes muscle and joint pain, as well
as difficulty with breathing and swallowing.
HOW ARE PPS DIAGNOSED?
There is no diagnostic test for PPS, including the electromyogram
(EMG). PPS are diagnosed by excluding all other possible causes for new symptoms, including
abnormal breathing and muscle twitching that commonly disturb polio survivors' sleep, a slow
thyroid and anemia. Other neurological or muscle diseases are almost never the cause of PPS
symptoms.
ARE PPS LIFE-THREATENING?
No. But because of damaged brain activating neurons polio
survivors are extremely sensitive to, and need lower doses of, gas and intravenous anesthetics and
sedative medication. Polio survivors can have difficulty waking from anesthesia and can have
breathing and swallowing problems, even when given a local dental anesthetic.
IS PPS A PROGRESSIVE DISEASE?
PPS is neither progressive nor a disease. PPS is caused by
the body tiring of doing too much work with too few poliovirus - damaged, oversprouted neurons.
However, polio survivors with untreated muscle weakness were found to lose about 7% of their
remaining, overworked motor neurons each year.
IS THERE TREATMENT FOR PPS?
Yes. Polio survivors need to ''conserve to preserve,'' conserve
energy and stop overusing and abusing their bodies to preserve their abilities. Polio survivors must
walk less, use needed assistive devices -- braces, canes, crutches, wheelchairs -- plan rest periods
throughout the day and stop activities before symptoms start. Also, since many polio survivors are
hypoglycemic, fatigue and muscle weakness decrease when they eat protein at breakfast and
small, more frequent, low-fat / higher-protein meals during the day.
ISN'T EXERCISE THE ONLY WAY TO STRENGTHEN WEAK MUSCLES?
No. Muscle
strengthening exercise adds to overuse. Pumping iron and ''feeling the burn'' means that poliodamaged
neurons are burning out. Polio survivors typically can't do strenuous exercise to condition
their hearts. Stretching can be helpful. But whatever the therapy, it must not trigger or increase
PPS symptoms.
IS TREATMENT FOR PPS EFFECTIVE?
Yes. The worst case is that PPS symptoms plateau when
polio survivors stop overuse abuse. Most polio survivors have significant decreases in fatigue,
weakness and pain once they start taking care of themselves and any sleep disorders are treated.
However, because of emotionally painful past experiences related to having a disability, many
polio survivors have great difficulty caring for themselves, slowing down and especially with
"looking disabled" by asking for help and using assistive devices.
WHAT CAN DOCTORS, FAMILY, AND FRIENDS DO TO HELP?
Polio survivors have spent their
lives trying to act and look ''normal.'' Using a brace they discarded in childhood and reducing
overly-full daily schedules is frightening and difficult. So, friends and family need to be supportive
of life-style changes, accept survivors' physical limitations and any new assistive devices. Most
importantly, friends and family need to be willing to take on taxing physical tasks that polio
survivors may be able to do but should not do. Doctors, friends and family need to know about the
cause and treatment of PPS and listen when polio survivors need to talk about how they feel about
PPS and lifestyle changes. But friends and family shouldn't take control of polio survivors' lives.
Neither gentle reminders nor well-meant nagging will force polio survivors to eat breakfast, use a
cane or rest between activities. Polio survivors need to be responsible for caring for their own
bodies and ask for help when they need it.
Whether you had polio or not, please COPY and MAIL this letter to your doctors. With your help every doctor will learn about the cause and treatment of PPS and give polio survivors the care we so desperately need. Thank you!
