Spring 2014 - The Polio Network of New Jersey

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A QUARTERLY UPDATE FOR NEW JERSEY POLIO SURVIVORS
Registration Under Way
for PNNJ Conference:
Doctors Glaser and Salk To
Be Key Speakers
by Jean csaposs
PNNJ will hold its 24th annual conference on Sunday, April 27th, once again at
New Jersey's Bridgewater Marriott Hotel. The impact of polio on the past, present,
and future will resonate throughout U1e one-day meeting of polio survivors, families,
friends, and health care advocates. Vendors of goods and services of interest to
attendees will also participate. Registration by mail or online is now available.
An early response is indicated to insure that everyone desiring to attend can be
accommodated. Continental breakfast will be available from 9 a.m.
Keynoter: Dr Judith Glaser
Judith Glaser, Doctor of Osteopathic Medicine (DO), of
New Hyde Park, NY, will be the principal medical speaker, with
holistic approaches to treating post-polio syndrome as her main
theme. In addition to being an1ong the rare physicians who
care for people with PPS, Dr Glaser has developed expertise in
diagnosis and treatment of various pain conditions, including
specialized training and certification in medical acupuncture
Judi til Glase1; DO
for pain relief. Some of her presentation will be devoted to that
subject. Dr Glaser is board certified in physical medicine and
rehabilitation and has presented nationally and internationally on post-polio issues.
A graduate of New York College of Osteopathic Medicine, Dr Glaser completed
her residency training at New York's renowned Rusk Institute of Rehabilitation
-Medicine. he st>rved as eo-director of the Post-Polio Clinic and as attending
physiatrist at the National Rehabilitation Hospital, Washington, DC, working with
Dr Lauro Halstead, and returned to Long Island in 2012 to start her own practice.
Her website is www.drjudithglaser.com
Luncheon Speaker: Dr Peter Salk
Peter L Salk, MD, of La Jolla, California, president and
director of the Jonas Salk Legacy Foundation, will speak at the
conference luncheon on "Polio and Beyond: Jonas Salk in His
Centenruy Year." The eldest son of Dr Jonas Salk, he is a graduate
of the Johns Hopkins University School of Medicine. His starr
training in internal medicine was at the University Hospitals of
Cleveland, after which he worked in his father's laboratory at
Pete1· L Salk, MD
the Salk Institute from 1972 to 1984, conducting research on
immunotherapy for cancer and autoimmune diseases. He worked
again with his father in the 1990s on a project still ongoing to develop an inactivated
vaccine for prevention and treatment of HIV infection. Dr. Salk has also been engaged
in drug treatment for HIV and AIDS in Africa and Asia
(continued on page 2)
Spring 2014/ Vol 24. No. 2
Swallowing
Issues for
Polio Survivors
by Ray Jajko
"Swallowing problems and remedies
for polio survivors" was the workshop
topic of Jennifer Coutinho, Speech and
Language Pathologist at the Somerset
Medical Center, at the April2013 PNNJ
Conference on PPS.
Just as most people take walking,
running, and lifting for granted, many
of us polio survivors take the act of
swallowing for granted. In order to
swallow, our bodies must do a number
of things. If the entire throat area does
not operate as intended, we could
find ourselves cougl1ing or choking
during or after meals. Other symptoms
might include a hoarse voice, frequent
respiratory infections, weight loss,
pain, and the discomfort of food stuck
in our throats. The clinical term for
such swallowing issues is dysphagia
Post-Polio Syndrome involves
progressive muscle weakness years after
the initial disease. In polio survivors,
the dysphagia might be caused by
weakness in the muscles of the tongue,
mouth, and throat. We learned that
only about half of polio survivors were
aware that a problem existed when
they were eventually tested.
More symptoms of dysphasia
Most of us have probably
experienced food or drink "going down
the wrong pipe" with the ensuing fit
of coughing. This happens in what is
called the "pharyngeal phase" of the
swallowing process. It may result in
food or liquid entering the airway to
our lungs. Causes include muscle
weakness, reduced sensation, structural
issues, and more. One should be aware
(continued on page 4)
Happiness
Matters
Front University of Washington
AGING RRTC Fact Slzeet
Emotional health is an important
part of quality of life in persons
with disabilities, yet it's not studied
as frequently as physical health,
according to a study by the Aging
Rehabilitation Research and
Training Center at the University of
Washington. Emotional health
includes depression, satisfaction,
and happiness.
In our survey, we used a happiness
measure that includes 4 questions
asking about happiness. Scores ranged
from 1 to 7, where 7 suggests a high
level of happiness, and a 1 suggests
a low level of happiness. We looked
at levels of happiness ""ith levels
of depression.
Overall, we found people aging
with a disability had similar levels of
happiness to people aging without a
disability. We found people in older
age groups tended to be a little happier
than those in lower age groups. We
also found that persons with lower
levels of happiness were more likely to
have higher levels of pain, vision loss,
and falling. These results are interesting
because even though persons with
disabilities tend to have higher levels
of depression than those without
disability, their happiness levels
remain about the same.
What are U1e benefits for
happiness?
• Helps control negative emotions
• Associated with better health
and life expectancy
• Promotes resilience in the face
of hardship
• Broadens attention and builds
physical, social, and cognitive
resow-ces.
Registration Under Way for Conference
(continued from ]>age 1)
2014: The Centenary of Jonas Salk's Birth
The Jonas Salk Legacy Foundation is working with oU1er institutions and
organizations on events for iliis centenary year of Dr Salk's birth. The objective
of this collaboration will be to maximize the educational value of this year, with
respect to applying the insights and contributions of Jonas Salk's life, work, and
thinking towards U1e understanding and solution of ongoing challenges confronting
humanity, in various realms.
How to Register
A registration brochure is included in this Newslette1· mailing. Copies can be
obtained by calling 20 1-8-!5-6860 or bye-mailing lo [email protected].
Through a generous contribution from the NJ March of Din1es, PNNJ is able to
offer the conference, including continental breakfast and lunch, for $30. A limited
number of "scholarships" are available for NJ residents who may not be able to
afford the fee (call201-845-6860). Some visitors may wish to e1'\joy an overnight
or weekend stay at the Marriott; the brochure gives details. We look forward to
welcoming attendees from near and far to an ef\ioyable and educational meeting!
Beyond Polio
BeyondPolio is a program of the Jonas Salk Legacy Foundation, undertaken
in cof\iunction with Spencer Trask & Co., to assist the global effort to eradicate
polio and maintain success once eradication is achieved. BeyondPolio is
focused on reducing the cost and facilitating the use of the inactivated
poliovirus vaccine, developed by Jonas Salk and his colleagues, which may
play an in1portant role in the final stages of U1e global polio eractication effort.
BeyondPolio is using prize-based innovation challenges to attract new
creative approaches to this mission. Furtl1er discussion and background
is available on the BeyondPolio website (www.beyondpolio.org).
2
New Books
about Polio
in 2013
The Man He Became:
How FDR Defied Polio
to Win the Presidency
by James Tobin
With a painstaking
reexan1ination of
original docun1ents,
James Tobin uncovers
the twisted chain of
accidents that left
FOR paralyzed; he
reveals how polio recast Roosevelt's
faleful partnership with his \vUe,
Eleanor; and he shows thal FOR's
true victory was not over paralysis
but over the ancient stigma attached
to the crippled.
Polio Wars: Sister Kenny
and the Golden Age of
American Medicine
by Naomi Rogers
During World War II,
polio epidemics in the
United States were
viewed as the country's
woU1er war at home."
Polio Wars is the story
of Sister Elizabeth
Kenny - "Sister" being a reference to
her status as a senior nurse, not a
religious designation - who arrived in
thC' l TS from Australia in 1940.
A Life Not with
Standing, a Memoir
by Chava Willig Levy
The book chronicles
her adventures as an
iron lung alunma It
tells a story beyond
Chava Willig Levy's
polio chrorude: how
calanuties can befall
innocent people and how U10se
calanulies can evolve into and, in
fact, become ingredients of and
prerequisites for ensuing joy.
SOURCE: PHI MEMBERSHIP MEMO,
JAN. 2014, NO. 31
"Don't Be Afraid
to Travel" Part 2
by J oan Swain
(Edito1''s Note: FoUowing is a continuation
of the travel wo1*slwp article started in the
Fall/Winter issue. 1his section mports on
Lottie Esteban's presentation at the PNNJ
231ri Annual Conference, in April 2013.)
Mter You Arrive
"After you've flown, cruised, or
driven to your destination, what
happens when you get there?" Lottie
Esteban asked the workshop group.
To answer this question, she described
three popular travel destinations and
various travel options to consider.
"Any trip can be ruined if you can't
get transportation to see the sights you
came to see," Lottie noted. Websites
are a good source of information about
wheelchair accessible vans such as
Accessible Vans of America, Ride-Away,
Wheelchair Getaways, and Wheelers.
Accessibility infonnation is also
available on the Disney World and Las
Vegas websites about their accessible
buses, etc. "I can say with great
confidence that Disney World's own
barrier-free transportation system is
excellent- even the boats!" Lottie said.
She cautioned, however, that
renting from an accessible wheelchair
van organization is not like renting a
car from Hertz or Avis. Customer service
can differ from one place to another.
And it is not so easy or inexpensive to
rent a van in one place and leave it in
another. With many franchises, that is
not even an option. Airport pick-up
and drop-off fees can also vary from
$0 to $100 or more. So it is important
to remember to ask your rental agent
about their individual policies. If you
do decide to rent a barrier-free van, it
should be the first thing you do after
you've chosen your destination. They
go very quickly, especially in popular
travel seasons.
Lottie talked about getting to
Florida via the Auto-Train. "It will do
what it says - get you and your vehicle
there safely," she explained. They have
what they call an "ADA room" - a private
room large enough to accommodate a
wheelchair user and a companion. Your
room attendant will bring whatever
food you order, tum down your bed,
and help with your needs throughout
the trip.
However, the toilet and sink are
right there in the room separated from
the beds by only a curtain. The shower,
which is not inside the room, is not
accessible. You will not be able to get
to the dining car or the lounge as it is
unsafe to do so by going from car to car.
Lottie suggests bringing reading material
or previously downloaded movies. Since
the trip is only one night, it is tolerable.
However, she does suggest booking a
comfortable accommodation upon
arrival at your destination.
Accessible cab service
Las Vegas is the best for car service,
according to Lottie. Other cities she has
visited have been hit-or-miss or a very
long wait, even with a prior reservation.
(Ed. I have found accessible cabs
readily available at the Miami and Ft.
Lauderdale Airports.) In cruise ports,
Lottie has sometimes hired a driver
with a barrier-free vehicle in advance
of the trip. She advises that this is a
pricey option, but well worth the
money. If you choose to do this, she
says, go through the cruise line to hire
U1e driver because oU1erwise the line
will not be responsible for your safety,
nor will they hold the ship for you if
the driver is running late.
Lottie has found that casino
destinations are usually totally banierfree. "fve seen casino personnel
remove a bolted-down chair from the
front of a dollar slot machine so the
wheelchair user could play," she said.
"Recently I've noticed a trend to have
blackjack tables lower than the usual
height so we can wheel right up to them.
These tables are usually non-smoking
as well.
"In Las Vegas the monorail is
accessible, as is the Eiffel Tower in the
Paris Hotel. Atlantic City is also good.
The boardwalk, most shops, and
casinos are very easy to navigate. If
you purchase show tickets in Las Vegas
or Atlantic City, let the box office
PHI's 11th International Conference
(0~
%eoli-A;; J)~"
Saturday, May 31 Tuesday, June 3 , 2014
St. Louis, Missouri
www.post-polio.org
know that you will need accessible
seating - it can get sold out quickly.
The good news is that these are usually
an1ong the best seats in the house!"
Hawaii for the adventurous
If you are more adventurous and
think you can handle the plane ride to
Hawaii, Maui is an absolutely gorgeous
destination, according to Lottie. She
learned while renting an accessible van
that they do not use remote-controlled
ramps because of the difficulty of getting
parts. "For me," she said, "the beauty of
the island outweighed U1e inconvenience
of the manual ramp, so I took the rental."
She recently discovered that there is
one remote-controlled ramp vehicle on
the island, and if she goes again, she
said she'U make sw·e to get it! She also
learned recently that Wheelers has
accessible rental vans in Alaska.
"Travel is a wonderful way to
discover new places and new cultures,"
Lottie believes. "Even within the United
States, places like Hawaii, Alaska,
Virginia, Georgia, Texas, Oklahoma,
and New Mexico offer a diversity of
scenery, culture, and history that is
enriching and enlightening. We hope
you will take whatever opportunity
you can to enjoy it."
Board
Position
Open
Members of PNNJ are invited
to submit recommendations to fill
an open position on the PNNJ Board
of Directors. Application forms are
available from the Nominating
Committee chair, Lottie Esteban,
via e-mail to meshi51 [email protected]
or by calling her at 201-782-0389.
Applications will be accepted until
June 1st. Those interested can
apply for themselves or may wish
to recommend another individual
for consideration by the committee.
The Board opening has occurred
through the resignation of Ray Jajko.
Ray served with distinction as Board
Secretary and will continue as
co-leader with Lee Bekir of the
"My Polio Story" project. The
Board appreciates Ray's many
contributions to PNNJ.
3
Swallowing Issues
(continued from page 1)
of additional symptoms such as food
coming back through the nose, fevers,
chest congestion, and sneezing during
meals. Obviously this short narrative
can't include all the symptoms and
treatments. It must be stressed that only
an evaluation by a medical professional
will give you answers. You will then be
in a better position to choose a course
of treatment if necessary.
Testing and treatment
Testing and evaluation are said to
be painless and are relatively simple.
Clinical testing involves swallowing a
variety of food/liquid textures that are
infused with barium. The food / liquid is
swallowed while moving video images
are taken to see what is happening in
the swallowing process. This test, along
with other examination procedures will
help detemtine the course of treatment
that is suited to your situation. Some
may find it a bit w1comfortable during
the "fiberoptic endoscopic" examination
(a small tube housing a can1era is placed
through the nose to see the tluoal)
lf the exanlinalion and evaluation
indicate you have a problem, your
treatment may include "swallow
therapy" with a speech language
pathologist. There are a nwnber of
exercises for the throat area that can
be done in private once they have
been learned. It is extremely important
that you pay careful attention to yow·
swallowing, looking for the symptoms
of problems. If you even think you
may be experiencing any of the
symptoms, you probably should be>
exanlined by an otolaryngologist
(ear, nose, and throat doctor) who has
at least some specific knowledge of
post-polio challenges.
~
Abilities Expo
May 2-4
NJ Convention
And Expo Center
Edison, NJ
4
India:
Three Years
Polio-Free
Wild poliovirus has not been found
in India since January 13, 2011, meaning
that, from that date, India is no longer a
country where polio is endemic. Three
years of being polio free is a notable
milestone for the country as a whole,
but the success of the immunization
and awareness campaign has had a
wider in1pact. With this achievement,
it is hoped that soon the entire WHO
South-East Asia Region can be certified
polio free. A commission of experts
will meet on March 26-27, 2014, to
analyze the data and detennine the
polio status for the Region.
Historically, lnctia has been the
largest endemic reservoir of polio in
the world with between 50,000 to
100,000 paralytic polio cases occurring
each year between 1978 and 1995. It
has also been one of the main sources
of polio in1portation for other countries.
SOURCE: WORLD HEALTH ORGANIZATION,
REGIONAL OFFICE FOR SOUTH-EAST
ASIA WEBSITE
Polio Network of
New Jersey
NEWSLETTER
PO Box 537
Martinsville, NJ 08836
201-845-6860
www.pnr\i.org
[email protected]
WEBSITE ADDRESS:
E-1\f.AD..:
Joan Swain
Editor
NEWSLETIER DESIGN BY
Barbara Conklin, Hackensack, NJ
You Can Copy Us!
You are welcome to copy material from
this newsletter. We ask that you credit the
Polio Network of New Jersey Newsletter.
ATLANTIC COUNTY AREA
Ye Olde Mill Street Pub
6033 Main St, Mays Landing
3rd Wednesday at 12 noon
Contact: Marge or Steve Disbrow
609·909·1518, kittystamp@ comcast.net
BERGEN COUNTY
Maywood Senior Center
Duvier Place, Maywood
1st Saturday, 11 :30 am-1 :30 pm
Contact: Heather Broad 201-845-6317
hbroad@ netzero.net
ESSEX-UNION AREA
East Orange General Hospital
300 Central Avenue, East Orange
2nd Saturday, 12 noon to 2 pm
March, June, September, December
Contact: Edwina Jackson 973-699-1564 or
Thelma Van Uew, 908-753-6514
nubianqueen8@ aol.com
MONMOUTH COUNTY AREA
Seabrook Village
300 Essex Road, Tinton Falls
3rd Monday at 2 pm
Contact: Toni Wilczewski 732-229-9343
skywash01 @aol.com
MORRIS COUNTY AREA
Denville Municipal Building
1 St. Mary's Place, Denville
3rd Saturday, 11 am
April , May, June, September,
October, November
II Villaggio Restaurant
22 Gibraltar Drive, Parsippany
973-644-4888
Dinner meeting, 3rd Wednesday evening
March, July, December
Vince Avantaglato 973-769-0075
drvince@ njpolio.org
OCEAN COUNTY AREA
Health South Rehabilitation Hospital
14 Hospital Drive, Toms River, NJ 08755
Four (4) times a year on Saturdays
April, June, September, and November
Contact: Jerry Bojko 732-505-0151 or
Susan Payne Gato 732-864-0998
Website; www. tomsrivernjpolio.org
RARITAN VALLEYSomerset/Hunterdon Counties
Manville Library, Manville, 908-722-9722
1st Saturday, 10:30 am-12:30 pm
Oct, Nov, Dec, March, April , May
Contact: Lee Bekir 908-359-6736
leebekir@ njpolio.org
SOUTHWEST JERSEY AREA
New Seasons at Voorhees
501 Laurel Oak Road , Voorhees
4th Saturday, 10:30 am-12 noon
Contact: Anna Nasuti 856-740-1106
amn46 @comcast.net
DELAWARE LIAISON
John Nanni
609-605-4007 or [email protected]
As meeting locations, days, and times may
change, it is advisable for those who are
not in frequent touch with support groups
to call the contact persons in advance of
your planned attendance.