NOTE: This Message was originally addressed to Tom Mckeever
      from 76016.3722@compuserve.com and was forwarded to you by Tom Mckeever
                           --------------------
Date:         Sun, 9 Apr 1995 17:42:44 EDT
From:         TOM WALTER 
Subject:      PPS Q & A ON AOL BB
To:           Multiple recipients of list POLIO 
From America Online information service PPS Bulletin Board
PPS QUESTIONS AND ANSWERS, MARCH, 1995
by Drs Richard Bruno and Nancy Frick
PLEASE NOTE:  READ ME FIRST !
These general answers and our on-line discussion on 3/7/95 represent what is
written in the medical literature on PPS, our newest research and how we 
reat
patients at the Kessler Post-Polio Service. They are NOT intended as 
therapeuti
recommendations for you personally nor as a substitute for your being 
evaluated
by your own personal doctor and a doctor who knows about PPS.
Every polio survivor (PS) is different and prescribed treatments must take 
thos
differences into account.
Post-Polio Sequelae (PPS) is a diagnosis of exclusion, meaning a physician 
must
evaluate you and determine that no other condition is causing your symptoms. 
Yo
may have PPS alone, PPS and another problem or a condition not related to 
polio
at all. There are no medical tests that can prove you have PPS.
Read these answers, read the journal articles listed with each, and 
nderstand
them fully. Take them to your doctor or therapist and ask them to read and
understand them fully. Do not apply therapeutic techniques described here
(especially exercise) on your own.
We very much hope these answers serve an educational purpose and that you
integrate them with your own experience, personal wisdom and doctors'
recommendations so that you can thrive, not just survive, with PPS!
Best wishes,  Drs. Richard Bruno and  Nancy Frick
ABOUT PPS PREVENTION & PROGRESSION
There are no long-term studies of whether PS who have no symptoms will 
evelop
PPS. Every time a study of PS is done, the percentage with new problems
increases. The percentage was 22.4% in the first Mayo clinic study in 1982 
nd
increased to 78% in a British polio hospital follow-up in 1987. At the NY
Academy of Sciences Symposium on PPS April, 1994, the Mayo group and others
thought that more than 90% of PS would develop some problems related to their
polio.
Every PS is different. But, the rules that apply to every mortal apply to PS.
Anyone who has too few overworked, damaged nerves compensating for muscle
weakness for over 40 years is bound to have some problems. And, when you add 
PS
super Type A lifestyles and the fact the they work more hours of overtime 
han
non-disabled people, something's got to give.
But, the good news it that the study cited below and our new follow-up study 
of
all the patients we have treated show that if you listen to your body and 
top
doing the things that cause weakness, fatigue and pain, PPS often plateau and
can even decrease (see below: Exercise & Activity). One example: 18 months 
afte
their evaluation with us, PS who completed therapy reported 22% LESS fatigue;
however, PS who refused treatment or dropped out of therapy early had 21% 
ORE
fatigue at 18 months.
******************************
Peach PE,  Olejnik S Effect of treatment and non-compliance on Post-Polio
Sequelae. ORTHOPEDICS, 1991, 14(11): 1199.
ABOUT EXERCISE & ACTIVITY
Exercise has been the most hotly debated area in PPS. The studies cited below
say three things:
1) Listen to your body! If you are doing things that cause fatigue, weakness 
or
pain STOP DOING THEM!!!  PS need to pace their activities, that is work and 
the
rest about 2 times the amount they worked. Jim Agre showed that PS can do 
40%
more work if they PACE. You don't drive your car until it's out of gas; you
shouldn't drive yourself to exhaustion, weakness or pain;
2) We only prescribe the non-fatiguing exercises devised by Rubin Feldman 
hat
have been shown not to hurt PS. But, these exercises are not given to all
patients and are only prescribed after PS learn to pace and conserve energy!
Patients are usually given gentle exercise after they get a new brace to  
eep
muscle tone. The key word is NON-FATIGUING;
3) We have seen a small handful of PS who became deconditioned after surgery 
or
illness. Pacing and resting doesn't mean sitting or sleeping all day and not
moving. You should be doing what you need to do for yourself, and at your 
ob,
but in a paced, energy conserving, Type B fashion.
In our follow-up of all the patients we have treated, the three factors that
were related to a significant decrease in fatigue were 1) completing the PPS
therapy program; 2) doing absolutely nothing for 15 minutes twice a day; 3)
using a wheelchair or scooter for distances.
******************************
Young GR.  Energy conservation, occupational therapy and the treatment of
Post-Polio Sequelae. ORTHOPEDICS, 1991, 14(11): 1233.
Feldman RM, Soskolne CL.  The use of non-fatiguing strengthening exercises in
Post-Polio Syndrome. In LS Halstead and DO Wiechers (Eds) Research and 
Clinical
Aspects of the Late Effects of Poliomyelitis.
White Plains: March of Dimes Birth Defects Foundation, 1987.
Fillyaw MJ, et al.  The effects of long-term non-fatiguing resistance 
xercise
in subjects with Post-Polio Syndrome.ORTHOPEDICS,1991,14(11):1253.
Agre JC and Rodriguez AA.Neuromuscular function in polio 
survivors.ORTHOPEDICS,
1991, 14(12): 1343.
ABOUT FEET & LEGS
PS are notorious for having cold and purple "polio feet," caused in part by 
the
smooth muscle around the veins being partially paralyzed by the original 
polio.
Without muscle to control their size, veins fill with blood and cause your 
feet
to appear purple. Your feet become cold because the heat in this pooled blood
escapes into the air. Back in 1983, we found that PS's nerves and veins act 
s
if it's 20 degrees colder than the air, making it hard for the nerves, 
uscles
and connective tissues to work.  PS lost 75% of their muscle strength when 
he
room temperature dropped from 85 to 65 degrees Fahrenheit.
Cold is the #2 cause of muscle weakness in PS but is the easiest to treat. We
suggest that our patients take a bath in the morning, dry off and put on
polypropylene socks or long johns while they are still warm. Polypropylene
(trade name: Gortex, Thinsulate) is a silk-like plastic that holds heat in 
ut
allows sweating.
Also, engorged veins can cause swelling, especially when feet get hot in 
Summer
or after a long bath.  Jobst compression stockings sometimes help, as well as
keeping your feet up a lot during the day. But, leg swelling must be 
valuated
by your doctor!
******************************
Bruno RL, Johnson JC, Berman WS.  Vasomotor abnormalities as Post-Polio
Sequelae. ORTHOPEDICS, 1985, 8 (7):  865-869.
ABOUT GETTING OTHER DISEASES
PS can get all the diseases everyone else gets. That's why your doctor has to
exclude all other causes for your new symptoms before you settle on PPS. In 
our
1985 National Post-Polio Survey we discovered that PS were on average more 
Type
A - pressured, time-conscious, overachieving, perfectionistic - than any 
ther
group of Americans, including those who already had had heart attacks.  
However
PS were no more likely to have heart attacks or high blood pressure than 
anyone
else.
We found that PS also had 3 to 6 times more trouble with gut problems -
diarrhea, constipation, ulcer and colitis - as compared to the general
population. PS also have more headaches (but not migraines) and muscle pain
(often called Fibromyalgia). And, there is also one study that suggests that
more PS have hypothyroidism.
Also, 66% of PS report frequent anxiety and 31% of those who see us for
evaluation have a Major Depressive Episode - that's 6 times the rate for the
general population. Both old and new types of antidepressants are effective 
f
prescribed for PS. Again, your doctor needs to evaluate any and all new
symptoms!
******************************
Bruno RL, Frick NM. Stress and "Type A" behavior as precipitants of 
ost-Polio
Sequelae: The Felician/Columbia Survey. In LS Halstead and DO Wiechers 
Eds.):
Research & Clinical Aspects of the Late Effects of Poliomyelitis. White 
Plains:
March of Dimes Research Foundation, 1987.
Bruno RL, Frick NM.  The psychology of polio as prelude to Post-Polio 
Sequelae:
Behavior modification and psychotherapy. ORTHOPEDICS, 1991, 14(11):  
1185-1193.
Halstead LS.  Assessment and differential diagnosis for Post-Polio Syndrome.
ORTHOPEDICS, 1991, 14(11): 1209.
ABOUT DRUGS FOR PPS
A number of drug studies were presented at the NY Academy of Sciences 
Symposium
on PPS in April, 1994. Prednisone (a steroid) and Amantidine were tried 
without
success to treat PPS weakness and fatigue. Growth hormone was not found to be
helpful to treat new muscle weakness in one paper, but a multi-center study 
s
beginning.
Neal Cashman again reported on the use of Mestinon to treat muscle fatigue. 
e
found that a portion of PS whose motor nerves don't communicate well with
muscles report a decrease in muscle fatigue while using Mestinon. However, 
he
effect of Mestinon seems to wear off over time.
We presented our pilot study of a drug to treat PPS brain fatigue. In the 10% 
o
our patients whose fatigue did not improve following the standard treatment 
for
PPS (see above: Exercise and Activity), 60% reported less morning fatigue and
less trouble staying awake on drug versus placebo. However, even if drugs are
found that help, PS must still listen to their bodies and live their lives in 
a
paced, energy conserving, Type B fashion. There is no magic pill.
******************************
Bruno RL, Frick NM, Lewis T, Creange SJ.  The physiology of post-polio 
fatigue:
A model for post-viral fatigue syndromes and a brain fatigue generator.  
FIDS
Chronicle, 1994, 7(4): 36-42.
ABOUT MUSCLE TWITCHING
In the 1985 National PPS Survey, we found that 63% of all PS report that 
heir
muscles twitch and jump as they fall asleep; 33% reported that their sleep 
as
disturbed by twitching. This sleep disorder, called Generalized Random
Myoclonus, is often only noticed by the PS's bed partner. In doing sleep
studies, we found that a small dose of Ativa before bed usually stops the
movements and restores sleep.
Other sleep disorders, such as sleep apnea, are not uncommon in PS.  If you
snore, wake not rested, with a headache or are depressed, you should talk to
your doctor about a sleep study.
Many PS report another kind of muscle movement during the day: fasiculations.
These are muscle twitches you can see or feel. Fasiculations are found in 
any
non-disabled people. Usually, they are a sign, as is muscle pain, of muscle
overuse. Again, talk to your doctor about any twitching.
******************************
Bruno RL, Frick NM.  Stress and "Type A" behavior as precipitants of 
Post-Polio
Sequelae: The Felician/Columbia Survey. In LS Halstead & DO Wiechers (Eds.):
Research and Clinical Aspects of the Late Effects of Poliomyelitis. White
Plains:  March of Dimes Research Foundation, 1987.
Bruno RL, Frick NM, Creange SJ. Nocturnal generalized myoclonus as a 
post-polio
sequelae. Archives of Physical Medicine and Rehabilitation, 1995, (in press).
Bach JR and Alba AA. Pulmonary dysfunction and sleep disordered breathing as
Post-Polio Sequelae: Evaluation and management. ORTHOPEDICS,1991,14(12):1329
 * WCE 2.01á4/2037 * Thesaurus: ancient reptile with excellent vocabulary.
--- WILDMAIL!/WC v4.11 
1:374/22.0)
---------------