Post-Polio
Syndrome
(The
reason I'm Retired)
In 1953, I contracted Polio.
I suffered a mild case and after a few years of therapy and hard
work, nearly completely recovered. Soon polio was a fading
memory. I led a normal life ... Playing high school
football, attending college, marrying a wonderful woman, raising a
great family, and having a successful career ... Pretty much
the American dream.
Sometime in the late 80's or
early 90's, I started experiencing some unexplained symptoms.
By then, I had nearly completely forgotten about the earlier
polio. I'd been pretty active physically throughout the years.
I was involved in sports (racquetball, coaching football etc),
auto racing (see My Racing), hiking, weight lifting, hunting.
Almost overnight, my ability to compete began to slip markedly.
In addition, I could no longer continue both in my career and
participate in all the extra curricular activities. So by
stopping the extra curricular stuff, I could carry on with my
career.
By late 2001, It was
becoming clear that I could no longer work. My condition was
slowly deteriorating. I could only stand for short
periods and work steadily at my desk for only a couple of hours.
So in September of 2001, I retired.
Mia Farrow, who is a polio
survivor herself and a Chairpersons of The POST-POLIO LETTER
Campaign sends out the following letter written by Dr.
Richard Bruno. Dr. Bruno is the foremost authority on
post-polio and his letter (below) presents an overview of PPS.
His book, The Polio Paradox, is the most comprehensive
discussion of Post-Polio and its effects.
________________________________________________________
THE POST-POLIO LETTER
Basic facts about PPS for polio survivors, doctors, family &
friends.
Dr. Richard L. Bruno
Chairperson, International Post-Polio Task Force
Director, The Post-Polio Institute and The International Centre
for
Post-Polio Education and Research
Englewood (NJ) Hospital and Medical Center, USA
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 oversprouted, 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 for too long
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 polio-damaged 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!
Mia Farrow, polio survivor
Thaddeus Farrow, polio survivor
Co-Chairpersons, The POST-POLIO LETTER Campaign
For more information about the cause and treatment of PPS go to
www.postpolioinfo.com
__________________________________________________________
My Current
Condition
Currently I need a cane
or crutches to get around. For any outing that looks like
it'll exceed more than about 200 ft total travel, I take my
scooter (a powered wheel chair). And I can stand for
only a few minutes at a time. Karin is a tremendous help in
reminding me not to overdo it. If I'm careful about my
activities, I can prevent the condition from any further
significant deterioration.
We hope to travel to New
Jersey soon (where the foremost post-polio clinic is located) to
get a complete analysis.
