56 WOODLEE LANE
THE NEXT MEETING OF
THE POLIO SURVIVORS SUPPORT GROUP OF WNY WILL BE HELD AT ST. LUKES LUTHERAN CHURCH, 900 MARYVALE DR. AT UNION ROAD ON WEDNESDAY,
JUNE 21, 2000 AT 7:30 PM.
First, we want to apologize for not getting the newsletter
out to inform you of the March 15th meeting. We had a small turnout, but to the people
that came I hope the meeting was informed.
We had a guest speaker, Jennifer Weir, Director of WNY Traid
Center, Technology Related Assistance for Individuals with Disabilities (TRAID)
at the University at Buffalo. She spoke
of new innovations of assistive devices and brought with her some of them and
demonstrated how they worked. They have
a lending library for adults and toys for children with special needs. To reach
the WNY TRAID Center, write or call:
Jennifer Weir, University at Buffalo, 515 Kimball Tower, Buffalo,
NY 14214. The phone number is: (716)
829-3141.
NOTE: IF YOU HAVENT
ALREADY DONE SO, PLEASE PAY $10.00 FOR YOUR DUES FOR THE YEAR 2000 TO: HENRY
MACIEJEWS. Thank you in advance.
At the next meeting, June 21, we plan to have pizza, wings,
and pop, so bring your appetite. Also, the guest speaker will be Pam Klein, a
physiotherapist at ECMC. The summer get-together will be on Wednesday, August
16th at 4:00 PM at Steamers on Tonawanda Island.
This article is reprinted and included in this newsletter
with the kind permission of ACCENT ON LIVING magazine, having been published
originally in their Spring 2000 issue.
ACCENT ON LIVING was established by a man who was himself a polio
survivor and often has articles about polio.
It also has articles of more general interest to people with
disabilities. If you are interested in
subscribing, they can be contacted at 1-800-787-8444.
By Peter C. Vincent
Is relief available for the symptoms that are brought on by
post-polio syndrome? Can the 120,000 to
240,000 post-polio syndrome (PPS) persons be free from the pain, weakness,
fatigue and breathing discomforts? Steps to relieving these symptoms are:
Management of Muscle Weakness
Polio survivors will know when it is
time to contact a physiatrist as symptoms of PPS begin to manifest. The doctor will
evaluate new muscle weakness and suggest management. Support utilizing
crutches, canes, braces, walkers, wheelchairs, grab bars, elevated seats, arm
rests, and motorized scooters to protect new weakness might be recommended. The
doctor will advise pacing yourself which encompasses switching jobs, retiring,
creating rest breaks, moving to an accessible home with a userfriendly
environment. And just changing priorities and eliminating non-essential
activities.
Once new weakness is stabilized and
a period of functioning without excessive pain, fatigue, or additional loss of
strength has been completed, the doctor will suggest a program of mild
exercise. The PPS patient will probably begin with gentle stretching, yoga, or
aerobics, and later, weight lifting, all supervised by a physical therapist
experienced with post-polio syndrome. After exercising, rest the tired limbs
until strength rebounds; depending on the degree of tiredness, expect muscle
restoration to return within one to seven days, my rehabilitation doctor said.
Lastly, be aware that stress is the
second leading cause of PPS symptoms, according to the Post-Polio Institute.
Being a polio survivor, I will vouch that fatigue leads to stress and, in
regard to mental tension, is increased proportionally to the comulation of
distress mustered in the PPS victim.
Management of Fatigue
Fatigue occurs every day, progresses, and peaks by noon, so
before weariness changes to debility inaugurated by unwittingly overtaxing the
body and expending energy which is no longer available, rest by taking naps
throughout the day. For fatigue launched by PPS, change to an energy saving
lifestyle which includes elevating household furniture, using electric scooters
for shopping, buying items from mail order catalogs, utilizing accessible
transportation, buying stamps by mail, using handicapped parking, drive-in
banks, ATMs, and pharmacies, voting with absentee ballots and employing
workers to assist with home or personal care.
Management of Pain
Dr. Lauro Halstead, author of Managing Post-Polio Syndrome, says Management of pain involves
supporting weak muscles with assistive devices, utilizing household adaptive
equipment, rest, heat treatments, ice packs, massage, stretching, painless
electric current (TENS), lifestyle modifications, avoidance of stress, and
medications.
Management of Respiratory
Complications
Dr. Halstead says, Patients with respiratory complications,
often accompanied with scoliosis and weak chest and diaphragm muscles, are
treated by pulmonologist who remedies the discomfort with inspiratory positive
pressure, which is sometimes combined with frog breathing which is projecting a
gulp of air past the vocal cords into the lungs. PPS patients with
supplemental coughing can hamper frog breathing, so these individuals are
helped by having the airway secretions cleared by manual or mechanical means of
chest percussion when abdominal muscles are weak. Other individuals requiring
negative pressure in their lungs are benefited with an iron lung, porta-lung,
chest shell, rocking bed, or abdominal pressure ventilator, says Dr. Halstead.
Management of Swallowing Problems
Speech and language pathologists from swallowing disorder
clinics specialize in diagnosing and treating difficulties in swallowing or dysphagia
and suggest that PPS patients, when eating, change the consistency of their
diet to substances that can be imbibed more easily, turn the head to one side,
tuck the chin, alternate food and liquid, avoid eating when fatigues, ingest
smaller, more frequent meals, and never swallow with the head thrown back or
while talking, states Dr. Halstead in his book.
Management of Cold Intolerance
Regardless of the season or amount of clothing worn, as a
PPS patient, you are probably affected by cold intolerance, says a specialist
with the Polio Society. I will vouch that cold intolerance is dealt with,
primarily, by utilizing your own judgement, multiple layers of clothing,
massages, local heat and immersion into hot tubs are useful against an
ineffective blood flow to affected limbs. Additionally, some patients are aided
by wearing nylon panty hose. Teddy hose or long underwear. An electric
blanket or heated mattress cover and socks worn during sleep periods are
helpful for cold intolerance.
Prognosis (Summary)
Yes, relief is available for the polio survivor who is or
will be afflicted with PPS. For the majority of persons who find the symptoms
of the newly discovered disease, PPS, haunting, there is abounding optimism. With
persistence and self-discipline, patients who properly manage their PPS can
improve, or keep from regressing, with a combination of lifestyle
modifications, bracing and pacing, various exercise programs, medication,
plenty of rest, and, if possible, avoidance of stress.
Sources
for information:
Managing Post-Polio-A Guide to Living Well
with Post Polio Syndrome, edited by Lauro S. Halstead, M.D., NRH Press,
Publication office, 102 Irving St. NW, Washington, DC 20010. http://members.aol.com/harvestctr/pps/polio.html.
Additional
Reading:
Agre, JC, Rodriquez, AA, Harmon RI, Strengthening Exercise Can Improve Function
in Post-Polio Subjects without Detectable Adverse Affect Upon the Surviving
Motor Units or Muscle.
Abstract. Arch Phys Med Rehab. 1995: 76:1036.
Bernstein,
S. ed. Explorations in Group Work:
Boston University, 1962. The Late Effects of
Poliomyelitis-An overview of.
Questions and Answers about the Post-Polio Syndrome. A publication of the
International Polio Network, 4207 Lindell Blvd., #110, St. Louis, MO
63118-2915; (314) 534-0475.
Auroy, Y,
Narci, P, Messiah, A. et al. Serious Complications Related to Regional
Anesthesia: Results of a Prospective Study in France! Anesthesiology, 1997; 87:
479-486.
Trojan, DA,
Cashman, NB. Current Trends in Post-Poliomyelitis Syndrome. New York, NY:
Milestone Medical Communications, 1996.
Halstead,
LS, Grimby, G. eds. Post Polio Syndrome. Philadelphia: Hanley and Belfus, 1995.
WWW
Information Web Pages:
At the last meeting, Don OConnor announced the following
changes in the Group offices: Dave Hamilton,
who has for several years served as the Recording Secretary and therefore as
editor of the newsletter, has agreed to fill the position of Vice President, in
which capacity he will be having a greater role in arranging for speakers. High on that agenda will be his efforts to
bring to Buffalo another nationally recognized researcher in the Post Polio
complications. Susan Calvaneso has
agreed to serve as Recording Secretary and will be doing the newsletter, beginning
with this issue. Don will take a vote
of the group at the June meeting to confirm these changes.
A note from Gail and Bob Mates: They sold their home and bought a 30ft. motor home and will spend
winters traveling and June-October in their cottage. They will use the
forwarding mail service at PMB 199, 266 Elmwood Ave., Buffalo, NY 14222-1203; cell phone: 360-202-2029;
e-mail: matesr@asme.org and gpmates@acsu.buffalo.edu. I am sure
they would love to hear from you. If
anyone would like to read their letter, let me know.
If anyone has anything
-- news, information, etc. that
they would like to be put into the next
flyer, please contact me by e-mail: calvanes@buffalo.edu,
and I would be happy to insert it.
Respectfully submitted,
Susan M. Calvaneso