DISABILITY ISSUES
Vol. 19 No. 4
The Late Effects of Polio:
They are Real & There is
Help
by
Joan Headley
“As
everyone grows old it is natural that physical limitations increase. With
polios, the limitations come much earlier and, in these days, it is necessary to
cope to the best of our ability and without much assistance from the ,medical
profession.’
“During
the last few years, I find myself being able to do less and less and tire far
too easily. I would, therefore, like to suggest that readers of Rehabilitation
Gazette, which seems to be the last polio link, submit
names of doctors they know in their home town who can easily relate medical
problems to polio problems.”
Larry
Schneider in Rehabilitation Gazette (Volume 22, 1979)
Gini
Laurie, founder of Gazette International Networking Institute (GINI), responded
to the polio survivor’s plea and gathered together polio survivors, ventilator
users, policymakers, physicians, and representatives from industry to explore
the needs of aging polio survivors. This successful 1981 Chicago meeting was the
catalyst for the expansion of the educational efforts of the nationwide and
worldwide network now known as International Polio Network (IPN).
Poliomyelitis
Today
Poliomyelitis
(infantile paralysis) has been eradicated from nearly every country in the world
since the approval for use of the Salk (1955) and Sabin (1962) vaccines. In
1997, 5,185 cases of polio were reported worldwide; in 1998, 5,867. The increase
in the number of cases is due to improved surveillance and reporting techniques.
The World Health Organization (WHO) estimates that there are five to six times
as many paralytic cases as reports received. Nevertheless, WHO has targeted the
year 2000 for the complete eradication of acute poliomyelitis.
WHO
estimates there are 12 million people worldwide with some degree of disability
caused by poliomyelitis. A 1994 National Center for Health Statistics survey
reported a preliminary estimate of one million survivors in the United States.
About 33,000 of them reported paralysis resulting in some form of impairment.
Survivors
of Poliomyelitis May Experience Symptoms that Include:
—
Unaccustomed fatigue B either rapid muscle tiring or feeling of total body
exhaustion.
—
New weakness in muscles, both those originally affected and those seemingly
unaffected.
—
Pain in muscles and/or joints.
—
Sleeping problems.
—
Breathing difficulties.
—
Swallowing problems.
—
Decreased ability to tolerate cold temperatures.
—
Decline in ability to conduct customary daily activities such as walking,
bathing, etc.
These
general symptoms are experienced in varying degrees, and their progression can
be insidious. They should not be dismissed simply as signs of aging alone.
Current research indicates that the length of time one has lived with the
residuals of polio is as much a risk factor as chronological age. It also
appears that individuals who experienced the most severe original paralysis with
the greatest functional recovery are having more problems now than others with
less severe original involvement.
The
Diagnosis of Post-Polio
Syndrome is One of Exclusion.
A
definitive test is not yet available. Some of the confusion and doubt among
polio survivors, health professionals, and family members is due to the lack of
common understanding of terminology. It is helpful to think of post-polio
problems in the following categories, remembering that the groupings are not
distinct but parts of a continuum.
The
largest and most inclusive category is called Late
Effects of Polio or Polio Sequelae
and is defined as specific new health problems which result from polio-caused
chronic impairments, e.g., degenerative arthritis of overused joints, carpal
tunnel syndrome and other repetitive motion problems, tendinitis, bursitis,
failing joint fusions, overstressed joints due to compensatory body mechanics.
Post‑Polio
Syndrome, a
sub-category of the late effects of polio, is defined as a neurologic disorder
characterized by increased weakness and/or abnormal muscle fatiguability
(decreased endurance). The cluster of symptoms includes new weakness, intense
fatigue, and pain in muscles and joints resulting in decreased endurance and
diminished function. Most clinicians use the following criteria to diagnose post-polio
syndrome.
—
Confirmed history of acute paralytic polio. Some clinicians perform an
electromyogram (EMG) to document changes compatible with prior polio.
—
Recovery followed by 15 years or more of stability preceding the gradual or
abrupt onset of new weakness and/or abnormal muscle fatiguability, with or
without generalized fatigue, muscle atrophy, and/or pain.
—
Other conditions that might cause the problems listed above must be excluded.
To
distinguish new, slowly progressive muscle weakness that is neurologic in origin
from that which is due to musculoskeletal and/or wear and tear problems,
researchers coined the phrase Progressive
Post-Polio
Muscular Atrophy (PPMA), defined as progressive new weakness and atrophy in
muscles with clinical or subclinical signs of chronic partial denervation/reinnervation
compatible with previous acute poliomyelitis. The term is used less often today,
giving way to post-polio syndrome.
Polio
survivors may experience one or more of the problems described above and should
not become unnecessarily concerned about the label for their symptoms. Polio
survivors may, of course, experience the same health difficulties as everyone
else, some with symptoms mimicking post-polio syndrome, some magnified due to
neurologic damage from former acute polio.
As the First Step in
Management
Polio
survivors should undergo a complete, general medical evaluation by a primary
care physician and a specialized neuromuscular evaluation by a knowledgeable and
experienced polio specialist to establish a baseline from which to judge future
changes and to develop an appropriate treatment plan.
Polio
survivors should first and foremost take care of their health by seeking
periodic, basic medical attention. Be nutrition-wise, avoid or reverse excessive
weight gain, and stop smoking or over-indulging in alcohol. Polio survivors
should listen to their bodies. Avoid activities that cause pain C pain is a
warning signal. Avoid unrestrained use of pain killers, especially narcotics. Do
not overuse muscles but do continue activity that does not worsen the symptoms.
In particular, do not over exercise or continue to exercise through pain. Avoid
activity that causes fatigue lasting more than ten minutes.
Polio
survivors experiencing symptoms should pace themselves in their daily
activities, resting when tired. Stop for a 15- to 30-minute rest when needed,
perhaps several times a day. Management may include the
increased
use of assistive devices. A change of equipment or new bracing may be
recommended. Polio survivors should educate themselves, their families, and if
need be, their health professionals.
The
IPN will gather once again in Saint Louis, June 8-10, 2000 for GINI’s Eighth
International Post-Polio and Independent Living Conference. For details, contact
GINI, 4207 Lindell Blvd., #110, Saint Louis, Missouri, 63108, or telephone (314)
534-0475, (314) 534-5070 fax, e-mail gini_intl@msn.com,
or the web site www.post-polio.org.
Resources
The
following publications are available, as noted, from GINI at the above address:
Handbook
on the Late Effects of Poliomyelitis for Physicians and Survivors
(ISBN 0-931301-04-1 pbk), revised in 1999, is a 120‑page book in
dictionary format containing 90 entries which are a compilation of the research
and experience of more than 40 experts. Edited by Frederick M. Maynard, MD and
Joan L. Headley, MS.
For
1-5 copies: $15 each, plus total s&h of $3.50 in USA; plus total s&h of
$4.50 outside USA (Contact IPN for bulk order pricing.)
Polio
Network News
(ISSN 1066-5331), the quarterly newsletter of International Polio Network,
contains current information about the late effects of polio, encourages
research, and promotes networking among the post-polio community worldwide.
Published quarterly in February, May, August, November. Edited by Joan L.
Headley.
Subscriptions:
USA $20; Canada/Mexico & Overseas surface $25; Overseas air $30. (Four most
recent issues B USA $20, Overseas surface $250).
IVUN
News
(ISSN 1066-534X), the quarterly newsletter of International Ventilator Users
Network, links ventilator users, their families, and peers with each other and
with health professionals committed to home mechanical ventilation. Published
quarterly in March, June, September, December. Edited by Judith Raymond Fischer.
Subscriptions:
USA $17; Canada/Mexico & Overseas surface $22; Overseas air $27. (Four most
recent issues B USA $17, Overseas surface $22).
Rehabilitation
Gazette
(ISSN 0361-4166), an update on disability issues, publications, resources,
equipment, conferences, GINI activities, and other information useful in living
independently. Published bi-annually in January and July. Edited by Joan L.
Headley.
Subscriptions:
USA $12; Canada/Mexico & Overseas surface $14; Overseas air $16.
Massachusetts Support Groups
Shirley
Nisbet
The
Cape Cod Support Group
North
Falmouth, MA 02556
(508)
564-4957
(508)
564-4958 (fax)
Elaine
Burns
Greater
Boston Post-Polio Assn.
Wellesley,
MA 02482
(781)
596-8245
meets
Saturday, Quarterly
Carroll
Dwyer, III
Post-Polio
Information Connection
Springfield,
MA 01108
(413)
732-4895
The
following Directories are also available:
Post-
Polio
Directory
lists self-identified clinics, health professionals, and support groups
knowledgeable about the late effects of polio. The Directory
contains over 500 entries including an international section. Published annually
in March.
USA
$5; Canada/Mexico/Overseas surface $6; Overseas air $7
IVUN
Resource Directory
is an excellent networking tool for health professionals and both long-term and
new ventilator users. Sections include health professionals, ventilator users,
equipment and mask manufacturers, service and repair, organizations, etc.
Compiled by Judith Raymond Fischer. Published annually in October.
USA
$5; Canada/Mexico/Overseas surface $6;Overseas air $7
Joan
L. Headley is Executive Director of Gazette International Networking Institute (GINI)
in St. Louis, MO.