PPS QUESTIONS AND ANSWERS,
MARCH, 1995
by Doctor Richard Bruno and Doctor Nancy Frick
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 treat patients at the Kessler Post-Polio Service. They are NOT
intended
as therapeutic 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 those 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. You 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
understand 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 Polio Survivors (PS) who have
no symptoms will develop 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 and 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 than 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 stop doing the things that cause weakness, fatigue and pain,
PPS
often plateau and can even decrease (see below: Exercise &
Activity).
One example: 18 months after 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% MORE fatigue at 18 months.
References
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:
-
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 then rest about 2 times the amount they worked. Jim Agre showed
that
PS can do 240% 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;
-
We only prescribe the non-fatiguing exercises devised by Rubin Feldman
that 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 keep muscle tone. The key word is NON-FATIGUING;
-
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 job, 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
-
completing the PPS therapy program;
-
doing absolutely nothing for 15 minutes twice a day;
-
using a wheelchair or scooter for distances.
References
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
exercise 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 paralysed 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 as if it's 20 degrees colder than the
air,
making it hard for the nerves, muscles and connective tissues to work.
PS lost 75% of their muscle strength when the 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 but 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 evaluated by your doctor!
References
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 other 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
diarrhoea, 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 if prescribed for PS. Again, your doctor needs to evaluate
any
and all new Syrnptoms!
References
Bruno RL, Frick NM. Stress and "Type A" behavior as precipitants of
Post-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(1l): 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 is beginning.
Neal Cashman again reported on the use of Mestinon to treat
muscle fatigue.
He 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, the 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% of our patients whose fatigue did not improve following the
standard
treatment for PPS, 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.
References
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.
CFIDS Chronicle, 1994, 7(4): 36-42.
ABOUT MUSCLE TWITCHING
In the 1985 National PPS Survey, we found that 63% of all PS report
that
their muscles twitch and jump as they fall asleep; 33% reported that
their
sleep was 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 Ativan 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 many non-disabled people. Usually, they are a sign, as is muscle
pain,
of muscle overuse. Again, talk to your doctor about any twitching.
References
Bruno RL, Frick NM. Stress and "Type A" behavior as precipitants of
Post-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, 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.
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