Greetings, All!!
A collection of PPS Info Messages from the POST_POLIO Echo..
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From Carol Shenkenberger:
NIH GUIDE, Volume 21, Number 5, February 7, 1992
Background
Survivors of paralytic poliomyelitis have begun to suffer renewed neuro-
logical and neuromuscular symptoms decades after maximum recovery from
the acute disease. Symptoms include a form of progressive muscular
atrophy that involves new muscle weakness affecting certain muscle groups,
pain, fatigue, and decreased physical endurance. Individuals who have
fully recovered from the initial episode and those who still have residual
effects are at risk. A number of terms have been proposed to describe
these late effects including post-polio syndrome, post-polio motor
neuron disease, and post-polio muscular atrophy.
Estimates of the number of survivors of paralytic poliomyelitis in the
United States vary widely, from 250,000 to over 1 million. A 1984
epidemiological study performed by the Mayo Clinic found that 25 percent
of survivors had renewed symptoms, but a later follow-up of a sample of
the original respondents showed that 66 percent were experiencing new
weakness.
Pathologic mechanisms involved in the post-polio syndrome are not under-
stood, and there is evidence supporting several etiological theories.
Changes in the motor have been studied extensively. After recovery
from acute polio, axons of surviving motor neurons sprout to reinnervate
muscles whose original motor neuron did not survive. It is hypothesized
that this process is ongoing for several years, after which the capacity
of the motor neuron to reinnervate additional muscles is reached and the
nerve terminals begin to degenerate.
A recent report of IgM antibodies to the polio virus in some patients
with recurring weakness suggests that late effects of the long dormant
polio virus may play a role. Other hypotheses that have been studied
include neuromuscular changes caused by premature aging in polio pa-
tients, an immunological mechanism, and spinal cord changes affecting
motor neurons.
Page -2-
Research Goals and Scope
Multidisciplinary or collaborative studies of the post-polio syndrome
are encouraged. Examples are given below, but applications are not
limited to these areas of research:
o Epidemiological studies to determine the prevalence of post-
polio syndrome and to develop standardized diagnostic criteria.
o Pathogenetic studies emphasizing the relative stability of re-
innervation following infection with the polio virus, terminal
sprouting, and growth factors.
o Animal models to study the pathogenesis of the original insult,
reinnervation, possible reappearance of symptoms, and restoration of
function.
o Use of new molecular biological techniques such as cloned polio
virus cDNAs and the polymerase chain reaction (PCR) to detect the
polio virus.
o Development of strategies of immunotherapy if it is determined
that an autoimmune mechanism is involved.
o Development of therapeutic strategies to improve or restore
neuromuscular function.
Inquiries
For further information regarding this announcement, potential applicants
[for a grant] may write or call:
Paul L. Nichols, Ph.D.
Developmental Neurology Branch
Division of Developmental, Convulsive, and Neuromuscular Disorders
National Institute of Neurological Disorders and Stroke
Federal Building, Room 8008
Bethesda, MD 20892
Telephone: (301) 496-5821
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From Bob Lantrip:
For some really GOOD information on Post Polio Sequelae contact:
Richard L. Bruno, Ph.D.
Kessler Institute for Rehabilitation
240 Central Avenue
East Orange, N.J. 07018
1-800-848-0296 ext. 547
(NOTE: - I have spoken with these people - GOOD info!! - Tom..)
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From Warren King:
The following is a bulletin I have had on my BBS. It may be a little
dated, but the info is probably still good. :-)
POST-POLIO SYMPTOMS & EFFECTS: A BRIEF GUIDE
The past few years have seen a great deal of research devoted to
what are generally referred to as "the late effects of polio." This
research continues; its pace accelerated. The symptoms and examples
listed here are known or suspected to be associated with post-polio.
Not every one will apply to any individual. There are many variables,
including your age, degree of disability, and how severe the polio was.
These symptoms are, however, a useful guide and beginning point for
assissing one's own life, seeking appropriate medical treatment, and
perhaps making necessary changes in lifestyle.
Know or supected post-polio problems tend to fall into four main
categories. They are: 1) unaccustomed fatigue; 2) joint and/or muscle
pain; 3) muscle weakness and/or loss of muscle use; and 4) respiratory
problems.
unaccustomed fatigue
--------------------
-Marked fatigue after moderate exercise or activity is common in
post-polios; fatigue can indicate muscle overuse.
joint and/or muscle pain
------------------------
-More common newmusculosketal problems in post-polios include
osteoarthritis of spine and pripheral joints,, scoliosis, bursitis,
tendonitis, osteoporosis, myofascial pain syndrome, foot and toe
deformities, carpal tunnel syndrome, chronic pain from strain to back
and neck muscles. These symptoms in post-polios generally result from
long stnading muscle weakness and imbalance; they are not merely part
of the normal aging process.
-Chronic strain on joints used in compensatory ways, e.g. weight bearing
with upper extremities, can lead to premature degenerative
osteoarthritis.
-Osteoporeosis of spine and long bones is very common in more severly
disabled post-polios. Lone bone fractures may occur with minimal
stress.
-Generalized pain in the spine and extremities is very common in
post-polios.
-Pains in the lower back are commmon, often caused by movements used to
compensate for weak hip muscles; this transfers weight to small facet
joints at the back of the vertebra, which are not disigned to handle
such stress.
muscle weakness and loss of muscle use
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-Muscles most commonly affected in post-polios are those that are
recovered well from the initial attack and have been used strenuously
since. Common manifestations are: new muscle weakness, increased
weakness or pain, generalized fatigue and weakness, post-exercise
weakness and/or pain.
-Post-polios work 2-3 times as hard as normal to accomplish the same
activity. The added strain may result in overuse damage.
-Weak abdominal muscles tend to foster chronic back strain and injury.
-Post-polios have less muscle reserve, and may need more time to resume
normal activity after surgery or severe illness.
respiratory problems
--------------------
-Combined deterioration of respiratory muscles--from polio AND
aging--may necessitate the use of breathing aids.
-Symptoms of failing respiratory reserve can be insomnia, restless
sleep, nightmares, morning headache or confusion, shallow breathing
patterns, breathlessness even during speaking. A combination of these
symptoms requires expert evaluation.
-Post-polios with severe respiratory impairments can develop sleep
apnea.
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Compiled by the Post-Polio League for Information and Outreach (P-POLIO)
Sources:
Handbook on the Late Effects of Poliomyelitis, 1984, ed. by Gini Laurie,
-------- -- -- ----- ------- -- -------------
Frederick M. Maynard, M>D>, D. Armin Fischer, M.D., Judy Raymond;
published by Gazette International Networking Institute, St. Louis,
MO.
1st Annual Research Symposium on the Late Effects of Poliomyelitis,
Warm Springs, GA.
1981 Rehabilitation Gazette, reporting on the 1st International
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Symposium on the Late Effects of Poliomyelitis.
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This is another bulletin carried on my board.
SPECIFIC RECOMMENDATIONS FOR POST-POLIOS
DO'S & DON'TS, GENERAL THERAPIES
AND THINGS TO AVOID
What follows is a general, practical guide for post-polios to use
and that summarizes in outline form the current thinking about
post-polio. It is not a substitute for individual medical evaluation or
therapy. It will be most valuable if it stimulates you to seek further
and more specific information.
--Take time to rest: nap if possible during the day, work fewer hours,
take longer vacations.
__If you are experiencing increasing muscle weakness, exercise only
under the supervision of a knowledgeable physician.
--Make sure you get adequate nutrition.
--Be alert to (not obsessed with) changes in your body, and heed your
body's signals.
--Take note of any new symptoms plus clear or gradual changes.
--Get enough exercise to prevent disuse atrophy, but not enough to
produce overuse damage.
--Learn how to pace yourself.
--Prevent the secondary complications of weakiness, particularly falls;
this might entail the use of crutches or a cane, or a wheelchair for
extended travel, or braces or other adaptive equipment.
--Avoid weight gain; too much weight only aggravates stress on joints
and muscles.
--Consider possible adaptatins to your life style; even minor
adjustments--changes in hobbies or modes of transportation--can help.
--Do not assume that every physician fully understands post-polio
problems; educate yourself, and never hesitate to ask questions.
--Minimize alcholol use,, particularly at bedtime; alcholol inhibits
swallowing, interfers with nutrition, and causes falls and other
accidents.
--Try to maintain a positive attitude toward your health; accept change,
adapt, and never equate your self-worth with physical disabilities.
--Post-polios with respiratory insufficiency should take common colds
very seriously.
--Get enough bulk-producing fiber in your diet. Avoid stimulant
laxatives.
--Medical evaluation of post-polios should include a complete history,
physical exam, and appropriate lab studies.
--Muscle strength evaluation should be done by a registered physical
therapist or someone familiar with neuromuscular diseases. Repeat
muscle testing is now advised every year, even if there is no obvious
change in strength.
--The current recommendation is that all post-polios have a complete
medical evaluation covering the three major areas affected by polio:
neuromuscular, circulatory, and respiratory.
--Problems with extremities or joint function may require special
consultation--from physiatrists, orthopedists and/or
neurologists--familiar with skeletal deformities and muscle weakness.
--Experienced physical or occupational therapists can help determine
functional losses and how best to adapt.
--Muscle stretching and joint range-of-motion exercies are important
where there is muscle weakness.
--Swimming is the best cardiovascular endurance and general conditioning
exercise. Water temperature should be warm (at least 90 degrees).
--Discontinue any exercise that causes pain, weakness, or muscle
fatigue, including walking.
--Muscles weakened by polio respond poorly to vigorous strengthening
programs. Such programs--weight lifting, for example--often aggravate
the condition.
--Post-polios should know their own strength limits or endurance and
avoid going repeatedly to that limit.
--Post-polios should avoid narcotics for any reason; aspirin is
preferred as an analgesic for muscle or joint pain.
--Occupational therapists can help assess upper extremity functin, daily
activities, and need for assistive devices--all to help achieve the
highest level of independence possible.
--Rest is the best known treatment for aching muscles. Moist heat,
anti-inflammatory medication, and avoiding exertion are also helpful.
--Physical therapy--heat, massage, jointmobilization, and stretching
exercies--can help chronic lower back pain.
--Change of gait pattern, such as using crutches, may be needed to
prevent recurrence of lower back pain.
--Post-polios MUST learn to conserve energy.
--Post-polios, even though once rehabilitate, must be re-evaluated and
learn new techniques to replace those that no longer work.
--Body positioning during sleep is important for post-polios with severe
weakness, postural or joint deformities.
--Post-polios with marginal respiratory reserve at sea level should be
prepared to use respiratory aid when travelling to elevations above
3,000 feet.
--Post-polios with respiratory insufficiency are advised to receive the
influenza vaccinatin accordint to U.S.Public Health Service guidelines
and recommendations.
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Compiled by the Post-Polio League for Information and Outreach (P-POLIO)
Sources:
Handbook on the Late Effects of Poliomyelitis, 1984, ed by Gini Laurie,
-------- -- -- ----- ------- -- -------------
Frederick M. Maynard, M>D>, D. Armin Fischer, M.D., Judy Raymond;
published by Gazette International Networking Institute, St.Louis,
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The above Info was extracted from various message on the FIDONET/ADAnet
POST_POLIO Echo over the last two years.. Hope it is helpful..
Tom McKeever
Moderator/Founder
POST_POLIO Echo
SPACECON BBS 1:374/22
(407)459-0969
December 22, 1993
Take care!!
Tom..
(tom.mckeever@mit.com)
(ksc_admin@ids.net)
SPACECON/BRAVEHEART BBS (1:374/22)
(407) 459-0969 452-8969 453-5393 (1200-28800 Baud)
(Home of INFOLOG, OTVIEW, & POST_POLIO and CARDIAC Echoes!!)
WOW! 220 hours SLIP+SHELL INTERNET access for $25.00/mo.! (407)453-4545!
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* Origin: SPACECON Med/Disab. BBS - Home of ye POST_POLIO ECHO.
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