NOTE: This message was originally in conference "INTERNET - E-MAIL AREA"
      and was copied here by Tom Mckeever.
From: TOM  WALTER 
To: TOM McKEEVER 
Date: 11 Jul 95 18:35:44 EDT
Subject: PPS PERSPECTIVE BY PERRY
 
From the March Newsletter of the (Downey, CA) Rancho Los Amigos Post-Polio
Support Group
 
POLIO IN PERSPECTIVE FOR 1995 With Dr. Jacquelin Perry
 
Reported by Mary Clarke Atwood; Posted by Tom Walter
 
Jacquelin Perry, M.D., Chief of Pathokinesiology and Polio Services at Rancho
Los Amigos Medical Center was the featured speaker at the Rancho Los Amigos
Post-Polio Support Group meeting in Downey, CA on December 10, 1994.
 
During the beginning portion of this lecture, Dr. Perry reviewed some basic
medical questions regarding post-polio syndrome, such as: who gets PPS; what
causes it; how is it diagnosed. She went on to explain muscle weakness in 
ore
detail before discussing lifestyle modification, tips for saving your 
shoulders
,
and exercise guidelines. She concluded by telling us what we can do, along 
with
some cautions.
 
POST-POLIO GROUPINGS
 
Many people assume that post-polio syndrome (PPS) is inevitable but it is 
ot.
Although 95% of the people who come to the Rancho Polio Clinic do have a
problem, there are a curious 5% of clinic patients who ask, "Do I have a
problem?" Since people who do not have a problem do not come to the clinic, 
Dr.
Perry divides polio survivors into three groups.
 
Group 1 - ASYMPTOMATIC (History of polio with no current symptoms). These 
peopl
e
can continue their activities as usual. But if they start having problems, 
they
need to cut back on their activity level.
 
Group 2 - POST-POLIO SYNDROME (new symptoms of pain, fatigue, or function).
These patients say, "My leg hurts," or "My thighs hurt," or "My calves ache."
For this group, the patient's lifestyle has exceeded their physical capacity 
so
they must make a change.
 
Group 3 - POST-POLIO SEQUELAE (Post-Polio joint degeneration from overuse).
These people may experience joint tenderness, joint pain, deformity, and/or
degeneration that can be seen on x-rays. They say, "My ankle hurts," or "My 
foo
t
hurts."
 
WHY DID THIS HAPPEN?
 
During the acute phase of polio, 95% of the patient's anterior horn cells 
ere
either injured or destroyed by the polio virus. (These are the nerve cells 
that
ultimately control muscles.) Within a month, 12% to 91% of these cells began 
to
recover. Although many people seemed to "recover," the majority do not have
as many motor nerve cells as normal. Therefore, their motor system is not as
strong as normal. So with fewer motor units, the muscles have been working
harder than normal trying to meet regular demands.
 
This results in overuse of the system and weakness develops, regardless if it 
i
s
due to a nerve problem or a muscle problem. "If you cannot relate your 
symptoms
to weakness of the breathing muscles, or weakness of the arm muscles, etc., 
the
n
it is something else." So when you visit your doctor, don't try to bias him 
y
saying the cause of all your problems is PPS. Be sure your doctor rules out
other problems because there is no one sign, examination, or laboratory test
that will confirm a diagnosis of PPS. Since a lot of physicians do not
understand PPS, the patient must put what they say in perspective. 
Nevertheless
,
it has been Dr. Perry's experience that the patients who come to see her and
announce that they have PPS are usually the ones who do not!
 
DIAGNOSING PPS
 
Dr. Perry bases a diagnosis of PPS on three things:
 
1. a history of polio;
2. a period of some recovery followed by new loss of function;
3. a physical examination that reveals:
        A. scattered muscle weakness (observed during an extensive manual 
muscl
e
test from head to toe);
        B. normal sensations;
        C. reflexes that are normal (2+) for strong muscles and depressed for
weak muscles.
 
MUSCLE MATTERS
 
*  Recovered muscles (post-polio) are less efficient since there are fewer 
moto
r
units as well as larger motor units.
 
*  If muscle weakness is revealed on a manual muscle test of the upper leg,
probably 1/3 to 1/2 of that muscle has been lost.
 
*  The weaker the muscle, the less frequently it should be used.
 
*  Every muscle can be overused - even those of athletes and marathoners!
 
*  If you do not have strong enough muscles for normal activities you cannot 
do
the same activities as people with normal muscle.
 
For normal muscles only 20% of the fibers are at work at any one time so 
here
is less fatigue. For polios, some muscles' fibers may be working 100% at any
given time so they get no rest and fatigue very quickly. If less than 20% of 
th
e
muscle fiber is working at a given time, the muscle gets full oxygenation and
works fine. As the percentage of muscle fiber in use increases "the less rest
they get, the less oxygen they get, the less they have a capacity to repair
themselves."
 
LIFESTYLE MODIFICATION
 
*  "If you have symptoms and you've overused your muscles, what do you do 
about
it? You modify your lifestyle and remove the strain."
 
*  Find ways to make tasks easier or get rid of the tasks.
 
*  Break up activities with rest periods.
 
*  Stop doing heavy tasks.
 
*  Look at the number of activities you have per day. Many people feel better
with fewer activities.
 
*  Polio survivors "do not have enough muscles to live the usual vigorous
lifestyle. So you have to make your lifestyle match your muscle strength."
 
*  Extra body weight is like carrying around a spare tire. The recommendation 
i
s
to reduce body weight by re-educating your taste buds. Dr. Perry compares 
his
to visiting a new country and learning to eat new food. She suggests 
convincing
yourself there are other flavors in life!
 
SAVING SHOULDERS
 
*  The shoulder is the most mobile joint in the body. It must have muscles to
support it: The deltoid muscle lifts up the arm; the rotator cuff stabilizes 
th
e
shoulder.
 
*  Polio patients activate twice as much of the muscle as a normal person to
lift up an arm, so the muscle has less rest and fatigues more easily. You 
ust
find ways to rest your shoulder and not use it all the time.
 
*  The arm is heavy; it weighs about 5% of your body weight (3.5 kg or about 

pounds). It is like having an eight pound weight hanging from each shoulder. 
Yo
u
can take pressure off your shoulders by bending your elbow and bringing your 
ar
m
and hand closer to your body.
 
*  Leaning on your arm is like leaning on your shoulder. When you push 
yourself
up with your hands you push through the wrist, push through the elbows, push
through the shoulders. This can cause impingement.
 
*  When you push yourself up with your hands the pectoral muscles are 
involved.
The pectoral muscles are a new area of focus that have not had much attention 
i
n
the past.
 
*  People who use crutches can wear out their shoulders. Their rotator cuff 
can
be repaired and will be ok if the person quits using the crutches and rides
thereafter. (It's like wearing out a sock and then darning it. But you don't 
ge
t
a new pair of socks.)
 
*  So how can you save your shoulders?
 
1.  Reduce reaching;
2.  Support your arms;
3.  Lean back about 10 degrees when sitting (with back support) and bring the
work up to you.
4.  Get others to do the job.
 
EXERCISE
 
*  When your lifestyle gives you a margin of muscle capacity that is not 
eing
used, then exercise can be considered. If there is no margin, there should be 
n
o
exercise.
 
*  Muscles that test as 3+ are markedly hypertrophied (enlarged). They have 
o
work double time for normal activities so they tire easily. These 3+ muscles 
ar
e
very good for short periods but they do not need more exercise.
 
*  Only muscles that test grade 4 or 5 should be considered for exercise. 
ven
some grade 4 muscles are questionable - you must be sure your lifestyle gives 
a
margin of muscle that is not being used before considering exercise for it.
 
*  If a muscle qualifies for exercise, it should be done for only 5 
repetitions
at 50% to 70% of capacity.
 
*  "Remember, all exercise is overload" so don't push or make muscles sore.
Polio muscles will never be normal.
 
WHAT CAN A POLIO SURVIVOR DO?
 
*  Dr. Perry says you can do anything as long as it causes no pain or fatigue
that lasts more than ten minutes.
 
*  When injured, tell the doctors you don't have any muscles and need to 
tart
"teasing" the muscles right away in order to regain movement.
 
*  Be aware that people who use electric carts or scooters can develop 
shoulder
and wrist problems. (Some vehicles can be retrofitted to avoid having to 
extend
an arm to reach the control piece; the vehicle can then be operated with a
person's arm remaining next to his body.)
 
*  Keep in mind that recovery from fatigue is slow if you have "pushed"
yourself.
 
*  "The more you face the facts and make your lifestyle planned, the more
comfortable you will be."
 
*  Remember, that all polios have the same perception of fatigue, whether 
hey
have PPS or not. Polios are "not hypersensitive to pain. When you hurt, you
hurt! So don't talk yourself out of it - protect yourself instead."
 
*  Don't forget that PPS is due to accumulated strain from chronic overuse. 
"So
get rid of the chronic overuse."
 
*  Dr. Perry's motto: "Be an Intelligent Hypochondriac!"
 
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