march 2020 caring “sharing and together volume 23 issue 3 ’20 … · 2020-03-03 · need for...
TRANSCRIPT
A
Publication of the Boca Area Post Polio Group March 2020 “Sharing and Caring Together” Volume 23 Issue 3
Thursday, March 12 @ 11:30 AM
10 Minutes with . . . Joel Sinkule
Let’s Do Lunch . . .
March 17 @ 11:30 AM
Prime Catch
700 E. Woolbright Road, Boynton Beach
561-737-8822 for directions [I-95 North, exit Woolbright Road East, turn right
before Intracoastal bridge to white-roofed building]
Next Meeting – Thursday, April 9, 2020
Lunching Around – Tuesday, April 14, 2020
FEBRUARY ’20 MINUTES
On a warm, breezy day, twenty members
gathered to hear our speaker.
We welcomed all members, especially
Walter/Susan Bieber we hadn’t seen recently.
Lunching Around – 12 hands went up!
Member Update – Keep members in prayer.
Library – Check books out and return timely.
Cruise 2021 – Exciting new itinerary! Pg.5.
Reneé Nadel was born 1943 Bronx, NY;
fled to Rockaway to escape polio epidemic,
yet contracted it in summer 1946, at age 3. She
remembers being shy; feeling sick with fever;
spinal tap; hospitalized; had Sister Kenny
treatments & only short parent visits. Received
home PT yet didn’t cooperate; eventually
walked with a limp; proved to principal she
could climb stairs enabling public school &
wore a brace for drop-foot until age 7.
Moved to Long Island; 1950 mom took
brace away; still walked w/dropped foot/limp;
2½ size shoe difference w/lift; tennis player
dad taught her to play despite disability. In HS
she told a friend about Polio, which freed her
& changed her personality to become a leader.
After HS, was counselor at Camp Ranger
(same camp as Professor Mike); met Joel;
Queens College; married him 1963 & lived in
Dixs Hills, NY; has Master’s & taught 7 yrs.
pre/elementary school. Moved to FL 1980 w/3
children; had left ankle fusion in ‘90s. Joel
passed 2006; met Harry 2007 & has a nice life.
Reneé was past President, South County
Tennis Association & now teaches adult
literacy & ESL. She enjoys her 7
grandchildren; aquacising; bridge; reading;
book clubs & BAPPG meetings.
SECOND TIME AROUND, MARCH 2020 – PUBLICATION OF BOCA AREA POST POLIO GROUP, BOCA RATON, FL 2
Unfortunately, due to illness, Professor
Mike was unable to travel from NY to speak.
Thanks to Reneé Nadel who ‘pinch-hit’ her
10-minutes in his absence.
The meeting was opened asking for
questions or comments from the members,
which covered many subjects. We conversed
about health care providers using too
technical of terms when presenting to our
group. Advised approximate fall date when
Professor Mike will speak. Several pros &
cons of walk-in tubs were offered.
Need for medical alert systems, ie.
pendants, ‘Alexa’, & GreatCall products,
especially for those living alone.
Polio Paradox was an eye-opener/life-
changer for a new ‘passer’ member and her
husband, who both now understand the need
to conserve to preserve by recently obtaining
a brace for drop foot & purchasing a scooter.
We talked about pain, fatigue, overdoing,
staying up late/getting enough sleep, eating
more protein, cutting down on carbs/sugar.
Oftentimes medications, lack of hormones,
stress & inability to nap can cause fatigue.
Some have found asking and accepting
help from strangers is getting easier when out
and about shopping. Using assistive devices
is liberating & energy conserving.
All in all, it was a good ‘sharing & caring’
meeting in spite of the program change.
After the meeting,
11 hungry members
gathered at Olive
Garden enjoying a
2½ hour lunch with
good conversation
and fellowship.
Submitted by Jane & Maureen
BAPPG appreciates the generosity of the
people who enable the printing of this
newsletter.
Earl Feick
Ellen Pedersen
Freeman & Lizzie Yoder
*Names remain for 1 year.
WITH MANY THANKS
We wish to thank the many
benefactors* who have given so generously
to the Boca Area Post Polio Group.
Sandy Katz & Stan Rose
Dr. Leo & Maureen Quinn
Daniel & Sonia Yates
Betty Thompson
Barbara Rogers In memory of husband Lee, members lost & In honor of Jo Hayden & BAPPG committee
Wilbur & Hansa May
Joe Virant (In memory of wife Millie)
Eddie & Harriet Rice
Bruce & Dianne Sachs
Reneé Nadel
Teresa Russell (In memory of father, Thomas Iovino)
Henry & Nancy Chajet
SECOND TIME AROUND, MARCH 2020 – PUBLICATION OF BOCA AREA POST POLIO GROUP, BOCA RATON, FL 3
A DECLARATION OF
INTERDEPENDENCE
By Sunny, August 24, 2019
“Need help with that ladder, Grandma?
No? Splat! OMG! Grandma fell from the
ladder! She’s grimacing in pain and can’t get
up! Call the ambulance! There goes Grandma
off to the hospital.
Sigh. I wish
Grandma knew that
asking for help
isn’t a cop out. It
takes courage at
first, but after that,
it would make life a lot easier for all of us.”
It seems that many people who are
living into later life resist asking others for
help in the name of independence and “not
wanting to burden anyone.” But what might
life really teach us about managing its never-
ending onslaught of challenges? Maybe
sharing my experience will be useful. As a
polio survivor for 67 years who has used
crutches, leg braces, and now an electric
scooter to get around, I was taught searing
lessons early on about the difference between
dependence and independence.
Dependence was a bad word. It
conjured up images of being shut away in a
medical institution or in a back bedroom
somewhere, sick and infantile, totally reliant
on others. I was also taught as a child not to
be a burden on others and was chastised
when I was moving in that direction. Now I
wonder about that. A burden? What does that
mean? I guess it means being emotionally
and physically needy, being a taker,
childishly weak, unable or unwilling to
participate in reciprocal relationships with
those around us. When we are too dependent,
do we become a thorn in the side of those
near us, an affliction imposed upon others?
Independence, on the other hand, was
a good word. A very good word. As children
of the polio epidemics of the 1950s, we were
indoctrinated with the goal of becoming
fiercely independent as we went through our
initial rehabilitation from acute polio. “Do it
yourself! You fell? Well, figure out how to
get up on your own! It’s a cold, cruel world
out there! You will always have to prove
yourself to others,” were messages I often
heard from my parents and therapists. And
those lessons worked well for me for a long
time.
Now, as a mature adult who continues
to live with a physical disability, I
contemplate: could it be that dependence
versus independence are two unreasonable
extremes? Too much dependence can lead to
dysfunction and low self-esteem. Conversely,
too much independence can lead to burnout–
always giving, always super-achieving.
What, then, is the most sensible way to
manage our daily lives now? Our greatest
American document, other than the
Constitution, is our Declaration of
Independence. For people who are growing
older with the late effects of polio or simply
growing older with the late effects of life, I
say we need to draw up a more evolved
document: our own Declaration of
Interdependence! Not wilting dependence.
Not blazing independence. But inter-
dependence.
Interdependence. It’s “the
quality of being mutually reliant on
each other.” Trying to be that timeworn kind of
independent doesn’t work as we grow into
our later life years. Trying to do everything
SECOND TIME AROUND, MARCH 2020 – PUBLICATION OF BOCA AREA POST POLIO GROUP, BOCA RATON, FL 4
without help is not only isolating; it can be
dangerous. Climbing a ladder to hang
curtains? A broken hip is no fun.
Traipsing in the snow
and ice to my roadside
mailbox instead of arranging
for front door mail delivery
with the post office? Let’s
think outside the box (or in
this case, the mailbox) about that issue!
Asking for convenient mail delivery
wouldn’t be viewed as a cop out by anyone.
It’s a smart thing to do. For me, front door
delivery has become an opportunity to share
a smile and good words with my mail carrier.
And I know by her friendly tidings that she
appreciates our positive rapport. Our new
arrangement may also have spared her the
horror of finding me stranded and struggling
in a snowbank trying to retrieve my mail the
old way.
These days painting the fence or
planting a garden could easily result in a fall,
and then a popped
bicep when trying
to push up from the
ground. My
Declaration of
Interdependence advises me to find a few
twenty-year-old’s who love outdoor work.
Then give them some of my best home baked
cookies, some money and my full attention
as they do the work, share their interests and
tell me all about their life plans. This way,
everyone gains from the experience.
At first it might feel humiliating or
distasteful to ask for new assistance, but it
can be done. In fact, in my own medical
situation, I discovered the hard way that it
must be done. When I unexpectedly faced
new debilitating pain, weakness and fatigue,
known as polio’s late effects, I had to ditch
my uninformed ways of managing medical
and lifestyle challenges. Now I pace myself
and metaphorically, “take the elevator
instead of the stairs.” I also make sure to tap
into the advice of physical and occupational
therapists regularly.
Since the early 1980s, polio survivors
numbering in the hundreds of thousands
around the world have, in the spirit of
interdependence, created and participated in
our networking organization, Post-Polio
Health International (PHI). Through PHI,
post-polio medical professionals and
survivors have learned from each other about
the late effects of polio. They have become
healthcare-interdependent. Banding together,
they have supported cutting-edge medical
research, built an extensive library of
scientific and historical information
(https://www.polioplace.org/) and continue to
advocate for resources. It’s powerful to
witness medical professionals and their
patients become each other’s experts as they
come together in conferencing, publishing
newsletters, and linking up on a variety of
web-based platforms.
Interdependence. It’s “the quality of
being mutually reliant on each other.” Under
the guidance of this new Declaration, my
neighborhood buddies and I now have added
opportunity to enjoy each other’s company
because we are more open about expressing
our changing needs. As we talk, we agree to
show up for each other in new ways. In the
process, we have identified one key to
success. I make sure that what I ask
others to help with is something they
genuinely like to do. Some enjoy running
errands. Others treasure their cooking skills.
Still others love to help with craft or sewing
projects. And they, in turn, know what I
would do best for them. Drawing upon our
SECOND TIME AROUND, MARCH 2020 – PUBLICATION OF BOCA AREA POST POLIO GROUP, BOCA RATON, FL 5
specific talents almost always guarantees that
our exchange will be mutually rewarding.
My Declaration of Interdependence
also extends to willing strangers whom I
encounter in public places. Often, I ask
unsuspecting shoppers at the grocery store
for assistance in reaching items on high
shelves. My reciprocal gift to them can be
sizeable or simple. A warm hearted thank
you and recognition that their kind assistance
is truly valued may be the only boost they
have had all day.
Adopting a renewed level of mutual
exchange makes sense because we have
always needed
others and they
have needed us.
Surprisingly, I
have found that
life can be even
more deeply
gratifying as I
risk receiving and giving in unexpected new
ways.
Living out my new Declaration of
Interdependence has been different. It’s also
been delightful.
Thanks for reading,
Sunny
Have Good Ideas for this Blog? Feel free to email me at
you have any questions, tips,
suggestions, guest post ideas,
requests and so on. All are
appreciated!
Source: http://www.sunnyrollerblog.com/a-declaration-of-
interdependence/
Posted on Facebook, 8/24/19.
BACK BY ‘POPULAR’
DEMAND!
BAPPG CRUISE 2021!!
Royal Caribbean Cruise Line
Allure of the Seas
February 21 – February 28, 2021
Cozumel, Mexico Roatán, Honduras
Puerto Costa Maya, Mexico
& CocoCay, Bahamas All Docked Ports-of-Call
Doesn’t a week in February, enjoying
the warm Caribbean sun, sound enticing?
Now is the time to book that cruise
you’ve always wanted to experience. Why
not join our 18th
annual trip leaving from Port
of Miami.
A variety of accessible staterooms
have been reserved for our group; and rates
begin at $941 per person, which includes all
taxes & port charges.
A $250 deposit per person is 100%
refundable until October 1, 2020.
PPS is not a pre-requisite – family &
friends are always welcome! Travel
insurance is strongly suggested.
Contact Maureen at 561-617-4450 or
[email protected] for questions, accessibility,
roommates, scooter rentals & onshore tours.
Contact Judith at 561-447-0750 x102,
or [email protected] for booking,
perks, transfers, hotels & air.
More details – www.postpolio.wordpress.com
4½ minute Allure of the Seas video -
https://www.youtube.com/watch?v=FaCiGAymtYc
SECOND TIME AROUND, MARCH 2020 – PUBLICATION OF BOCA AREA POST POLIO GROUP, BOCA RATON, FL 6
THIS IS FOR YOU . . .
WHEN IN YOUR SCOOTER
OR POWERCHAIR
PRIDE XLR USB CHARGER
Have you ever been out in your
scooter/powerchair and realized that your smart
phone is almost out of
power and there isn’t a plug in sight?
The Pride XLR
USB Charger is
compatible with most
iPhone, Android and
mobile devices. Simply
plug your USB cord into
this charger & plug the
other end into the charger port on your
chair. Your device will charge whether your chair
is moving or off. No need to be tethered to a
wall!! Charger will switch off automatically when
device is charged & will not discharge [drain]
chair battery. Specs: 5V DC; 1-Amp charger;
compatible with 24V/36V systems; 2” x 1” with
lanyard.
The charger is offered at $22.00. Internet has some for almost twice as much!
Just provide name, address, phone #, &
mail check payable to BAPPG, 11660 Timbers
Way, Boca Raton, FL 33428.
Courtesy of one of our BAPPG members!
MEN BRAGGING
Three men were sitting together
bragging about how they had given their new
wives duties.
The first man had married a woman
from Alabama, & bragged that he had told
his wife she was going to do all the dishes &
house cleaning that needed done at their
house. He said that it took a couple days –
on the third day he came home to a clean
house, dishes were all washed & put away.
The second man had married a woman
from Florida. He bragged that he had given
his wife orders that she was to do all the
cleaning, dishes and the cooking. He told
them that the first day he didn't see any
results, but the next day it was better. By the
third day, his house was clean, dishes were
done, & he had a huge dinner on the table.
The third man had married a Michigan
girl. He boasted that he told her that her
duties were to keep the house cleaned, dishes
washed, lawn mowed, laundry washed and
hot meals on the table for every meal. He
said the first day he didn't see anything, the
second day he didn't see any, but by the third
day most of the swelling had gone down and
he could see a little out of his left eye,
enough to fix himself a bite to eat, load the
dishwasher and telephone a landscaper.
Got to love those Michigan girls.
Source: Unknown
Contributed by Jane McMillen, member, 5/27/04.
Please provide your new
street/email address to be sure not to
miss an issue of Second Time Around.
SECOND TIME AROUND, MARCH 2020 – PUBLICATION OF BOCA AREA POST POLIO GROUP, BOCA RATON, FL 7
EXERCISE GUIDELINES FOR
POLIO SURVIVORS By Carol Vandennaker, MD
UC Davis Post-Polio Clinic, October 19, 2013
Exercise is defined as planned, structured,
and repetitive body movement. Physical activity
is movement occurring during daily activities. A
therapeutic exercise program is designed for
health benefit – generally to reduce pain,
increase strength, increase endurance and
increase the ability to do daily activities. Not all
polio weakness is due to overuse; often lack of
exercise and physical activity leads to muscle
wasting and cardiovascular deconditioning.
Research supports a carefully designed
therapeutic exercise program for most polio
survivors to enhance optimal health and
function. The program should be individualized
and modified if problems arise.
Important principles to follow are:
1. Start very slowly. Often 3-5 minutes is all that
can be tolerated initially if muscles have not
been exercised for a period of time.
2. Interval exercise, short bouts of exercise
alternating with rest periods, can be very
effective.
3. Progression should be slow, especially in
polio-affected muscles.
CRUISE 2020 A truly stellar group
of 28 people you
would ever want to
cruise with, from all
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to cruise with
BAPPG!
4. Intensity should be low to moderate.
5. The plan should include a rotation of different
types of exercise such as stretching,
cardiovascular (aerobic) conditioning,
strengthening, and range of motion exercises.
6. Pacing should be incorporated into the
program with at least one day of rest between
strengthening exercise sessions.
7. Aquatic exercise is often ideal as the
buoyancy of the water helps to support weak
muscles and unweight joints while providing
mild resistance to muscles. Remember it is easy
to overdo in the pool because it is so much easier
to move!!
8. Be aware that signs of overuse can occur 24-
48 hours after too strenuous exercise or an
overly active day. Symptoms of overuse indicate
a need to decrease the amount of exercise or
decrease the frequency of activity. The
symptoms to watch for are: muscle cramps and
spasms, muscle twitching, muscle pain and
extreme fatigue.
Remember that you can exercise safely &
improve your condition if you approach it with
patience and consistency! Revised 11/2018
Source: https://polioepic.org/wp-content/uploads/12-
exercise-guidelines-for-Polio-survivors.pdf
SECOND TIME AROUND, MARCH 2020 – PUBLICATION OF BOCA AREA POST POLIO GROUP, BOCA RATON, FL 8
GABAPENTIN (Brand names – Neurontin, Horizant,
and Gralise)
A Lengthy Conversation from
Marny Eulberg, MD July, 2019
Question:
I started Gabapentin for help with my “polio”
leg jerking and sleeping at night. I take one at
bedtime (low dose 100 mg.) and two if I have
been very active throughout the day. It has
definitely seemed to help with me for sleep,
but I feel as though I’m definitely getting
weaker.
Answer:
This is a good question and I’m not aware of
any scientific research addressing this
question. Gabapentin (and its cousin –
Pregabalin – brand name = Lyrica) do their
work at the site of neurons—peripherally and
at the brain level. So they might “Mask”
symptoms that could be a warning about
overdoing since they don’t really fix the
problem causing the symptoms.
I’m sorry to hear that your leg has
become weaker, but there is no way to know
if that would have happened (or how much
weakness might have happened) if you had
been aware of the symptoms and been able to
curtail your activities. The natural history of
PPS is increasing weakness over time so it is
difficult to say how much weakness would
have occurred just as a result of a year going
by.
Also getting poor sleep from
symptoms is not very good for muscle
recovery overnight – so I think this might be
another of those “chicken or egg” kind of
questions.
That being said – I’d like to talk more
about this medication.
Originally, Gabapentin was developed
as a medicine to treat seizures, particularly
“partial” seizures, but it was also found to be
helpful for neuropathic pain (as a result of
shingles or peripheral neuropathy and
sometimes nerve pain from a “pinched
nerve”), and possibly also for some
menopausal symptoms. It also has been used
for acute pain after certain surgeries, “restless
legs” symptoms, and essential tremor.
How does Gabapentin work?
Gabapentin treats seizures by decreasing
abnormal excitement in the brain.
Gabapentin relieves the pain of post herpetic
neuralgia (PHN) by changing the way the
body senses pain. It is not known exactly
how Gabapentin works to treat restless legs
syndrome.
•Side Effects. Drowsiness, dizziness, loss of
coordination, tiredness, blurred/double
vision, unusual eye movements, or shaking
(tremor) may occur. Other possible side
effects include swelling in hands or feet {this
is more likely with Lyrica – a cousin of
Gabapentin} or changes in mood or anxiety.
•Interaction with other medications or
supplements. Any medicine, including
alcohol that can on its own cause drowsiness
or brain fogginess may increase the nervous
system side effects of Gabapentin.
•Antacids (containing aluminum or
magnesium) may interfere with the
absorption of this medication. Therefore, if
you are also taking an antacid, it is best to
take Gabapentin at least two hours after
taking the antacid.
SECOND TIME AROUND, MARCH 2020 – PUBLICATION OF BOCA AREA POST POLIO GROUP, BOCA RATON, FL 9
•Use of Gabapentin in a person who has had
polio. There are anecdotal reports about the
use of Gabapentin for post-polio pain, but no
controlled, double blind research supporting
the use of Gabapentin for symptoms of PPS.
Although polio survivors may be prescribed
Gabapentin for other co-existing conditions
such as post herpetic neuralgia or diabetic
neuropathy.
Gabapentin, in some instances, has
decreased pain in polio survivors but may
have also possibly led to increased weakness
(because the person now was able to
“overdo” and without pain as an indicator
that they should stop or cut down on
activities). Please see the side effects listed
above. The ones that may be of particular
concern to polio survivors are the dizziness,
loss of coordination and vision difficulties,
especially as this relates to increased fall risk.
Dr. Eulberg, a family
medicine physician, is a
polio survivor herself,
located in Wheat Ridge,
CO. “I am retired from
family medicine. The only
patients I currently see are
people who have had polio and have polio-related
issues.” Source: www.papolionetwork.org, August 2019.
A SENIOR MOMENT
Don't laugh! This could be any of us in a
few years.
There were two elderly people living in
a Florida mobile home park. He was a
widower and she a widow. They had known
one another for a number of years. Now, one
evening there was a community supper in the
big activity center. These two were at the
same table across from one another. As the
meal went on, he made a few admiring
glances at her and finally gathered up his
courage to ask her, "Will you marry me?"
After a dramatic pause and precisely six
seconds of 'careful consideration,' she
answered. "Yes, Yes, I will."
The meal ended with a few more
pleasant exchanges and they went to their
respective places. Next morning, he was
troubled. "Did she say 'yes' or did she say
'no'?" He couldn't remember. Try as he
would, he just could not recall. Not even a
faint memory. With trepidation, he went to
the telephone and called her. First, he
explained to her that he didn't remember as
well as he used to. Then he reviewed the
lovely evening past. As he gained a little
more courage, he then inquired of her,
"When I asked if you would marry me, did
you say 'Yes' or did you say 'No'?"
He was delighted to hear her say,
"Why, I said, 'Yes, yes I will' and I meant it
with all my heart."
Then she continued, "And I am so glad
that you called, because I couldn't remember
who had asked me.
Contributed by Jane McMillen, member.
SECOND TIME AROUND, MARCH 2020 – PUBLICATION OF BOCA AREA POST POLIO GROUP, BOCA RATON, FL 10
PREVENTING COMPLICATIONS
IN POLIO SURVIVORS
UNDERGOING SURGERY (OR)
RECEIVING ANESTHESIA Post-Polio Sequelae Monograph Series.
Volume 15 (1). NY: random harvest, 2015.
Richard L. Bruno, PhD, Chairperson International
Post-Polio Task Force and Director, International
Centre for Polio Education
www.postpolioinfo.com
Unfortunately, only a handful of specialists
treat Post-Polio Sequelae (PPS) - the unexpected
and often disabling fatigue, muscle weakness,
joint pain, cold intolerance, swallowing, sleep
and breathing problems - occurring in America's
1.63 million polio survivors (40 years after their
acute polio).1,2
However, all medical
professionals need to be familiar with the
neurological damage done by the original
poliovirus infection that today causes
unnecessary discomfort, excessive physical pain
and occasionally serious complications after
surgery. This is a brief overview to inform
patients and professionals about the cause and
prevention of complications in polio survivors
undergoing surgery.
PRE-OPERATIVE PREPARATION
The pre-operative period is the most important,
since it is when polio survivors must establish
communication with the surgical team. After the
second opinion and a polio survivor's decision to
have surgery, the patient needs to ask the
surgeon to read this article and the references
cited. Then, surgical candidates must meet with
the surgeon and anesthesiologist to discuss in
detail patients' complete polio and general
medical histories and the problems that will
likely arise before and during surgery, in the
recovery room and on the nursing floor. It is also
recommended that the polio survivor meet with
the Supervisor of Nursing on the floor where
they will be transferred after surgery to discuss
likely problems during the post-op and recovery
period.
Lungs. We recommend that all polio survivors
have pulmonary function studies as part of their
pre-operative. This is vital for those who had
bulbar polio acutely, whether or not they used a
respirator or an iron lung. But, polio survivors
who have (or had) neck, arm or chest muscle
weakness or have swallowing problems should
also have their lung function tested 3 so there
will be no unpleasant surprises coming off the
respirator at the end of the operation. Polio
survivors with a lung capacity below 70% may
need a respirator or respiratory therapy after
surgery.1 Of course, polio survivors who use a
respirator during the day or at night must discuss
their respirator use and maintenance in detail
with their surgeon, anesthesiologist, the nursing
staff, and with their own pulmonologist, before
admission to the hospital.
Physical Assistance. X-rays are a normal part of
pre-op testing. Because of workers
compensation concerns, many hospital staff are
not eager to move or lift patients. Unfortunately,
X-ray and examining tables are built at heights
that are convenient for the professional, not the
patient. Many polio survivors cannot step on a
stool to get onto a high table, or even pull
themselves over onto a table from a stretcher.
Thus, polio survivors must ask for help in
transferring. Since most polio survivors have no
experience asking for help under any
circumstances, they need to find a phrase with
which they are comfortable that will
communicate whatever their needs are. Long
explanations about having had polio or PPS or
the specifics of which muscles are weak or
paralyzed are not necessary. (For example, a
simple "My legs (arms) are paralyzed and I can't
get onto that table” or “I will need help" should
suffice). This phrase may have to be repeated
before the polio survivor will be assisted. If the
professional replies, "Oh, I bet you can move by
yourself if you try!" or "Don't expect me to lift
SECOND TIME AROUND, MARCH 2020 – PUBLICATION OF BOCA AREA POST POLIO GROUP, BOCA RATON, FL 11
you," an appropriate response is "I cannot get
onto the table. Please ask someone else to help
me or let me speak to your supervisor." A
pleasant but steadfast refusal to do difficult or
dangerous transfers is the polio survivor's best
defense against injury before or after surgery.
ANESTHETICS General Anesthetics. Polio survivors are
exquisitely sensitive to anesthetic. It has been
known for 50 years that the poliovirus damaged
the area of the brain stem – called the reticular
activating system (RAS) – rresponsible for
keeping the brain awake.4, 5
Because the RAS
was damaged in those who had paralytic and
non-paralytic polio, a little anesthetic goes a
long way and lasts a long time. For example, the
pre-operative medication used to "calm" surgical
patients - sometimes Valium or Vistaril – may
by itself put polio survivors to sleep for 8 hours.
(Such excessive and prolonged sedation does
occur when low-dose Propofol is used alone in
patients undergoing invasive but nonsurgical
procedures, like endoscopy.) Add to a pre-
operative "calming cocktail" an intravenous
anesthetic (like sodium pentothal) or a gaseous
anesthetic, and polio survivors have been known
to sleep for days. Propofol is the drug of choice
for polio survivors. In addition, polio survivors
with respiratory problems may have trouble
clearing the gaseous anesthetics. A number of
our patients have awakened from anesthetic on a
respirator in I.C.U. to the frightened faces of
their family, surgeon and anesthesiologist
several days after surgery.
Here is the first of rule of thumb - we call
"Rules of 2" – for polio survivors having
surgery:
Anesthetic Rule of 2:
Polio survivors need the typical dose of
anesthetic divided by 2.
This first "Rule of 2" is certainly NOT
intended to dictate the dose of anesthetic, but
merely to remind anesthesiologists that polio
survivors need much less anesthetic than do
other patients. This does not mean that a given
polio survivor might require less than 1/2 the
typical anesthetic dose, or that another won't
need more anesthetic. As always, the dose of
anesthetic must be individually adjusted (for
body weight, lipid space, etc) and be adequate to
keep patients under during surgery but not cause
them to sleep for a week. We have found
Desflurane to be the best tolerated anesthetic
when used with BIZ brain wave monitoring.
Even applying the "Anesthetic Rule of 2"
polio survivors may be very sedated, if not
asleep, for many hours after the surgery. This is
one of the reasons why same-day surgery - even
for complicated dental procedures – is not
advisable for polio survivors. Sleeping or
excessively sedated polio survivors cannot be
expected to return home and take care of
themselves after same-day surgery, since
surgical complications may go unnoticed and
sedation-impaired coordination makes falling
likely. In spite of insurance company pressure,
NO POLIO SURVIVOR SHOULD HAVE
SAME-DAY SURGERY except for the simplest
procedures that require only a local anesthetic.
Nerve Blocks. However, there are also problems
with local anesthetics that numb only one area of
the body. Spinal anesthetics, like epidural or
saddle blocks used for childbirth and lower body
procedures, often allow surgery without the
patient being asleep and are therefore more
desirable for polio survivors. However, the
injection of a local anesthetic near the spine
results in both pain-conducting nerves and motor
neurons being anesthetized. Polio survivors are
very sensitive to anything that further impairs
their poliovirus-damaged motor neurons; and a
spinal anesthetic may cause polio survivors to be
paralyzed for many hours. If a spinal anesthetic
is used, polio survivors cannot be expected to get
up and walk after surgery. Curare-like drugs that
are intended to paralyze muscles (e.g.,
succinylcholine) are typically used during major
surgery to relax muscles that are going to be cut
SECOND TIME AROUND, MARCH 2020 – PUBLICATION OF BOCA AREA POST POLIO GROUP, BOCA RATON, FL 12
and make it easier for the ventilator to fill the
lungs while patients are on the table. Again, any
drug that interferes with muscle functioning will
prevent polio survivors from walking or even
moving for hours longer than it would for
patients who didn't have polio.
Regardless of whether a local, spinal or
general anesthetic is used, the following applies:
Post-Anesthetic Rule of 2: Polio survivors require 2 times as long to
recover from the effects of any anesthetics.
Blood and Guts. There are yet additional
concerns. Polio survivors with muscle atrophy,
especially in the thigh muscles, will have a
smaller blood volume than would be expected
for their height or weight. Therefore, bleeding
during surgery may be more of a problem. Polio
survivors may want to bank their own blood
slowly over the course of weeks, even for
procedures where excessive blood loss is not
typically expected. However, since polio
survivors may be significantly more fatigued and
prone to faint after giving blood, relative's blood
may need to be banked instead. Also, polio
survivors can be sensitive to atropine-like drugs
used to dry secretions during surgery.6 Atropine-
like drugs also slow the gut, and polio survivors
may be excessively constipated after surgery or,
in some cases, actually have their stomachs and
intestines stop moving (gastroparesis; paralytic
ileus) for a period of time. These problems can
be treated symptomatically as they would in
someone who did not have polio.
Positioning. One overlooked problem is the
positioning of the post-polio patient on the
operating table. Muscle atrophy, scoliosis and
spinal fusions may make certain positions
problematic, especially those involving
extension of the spine. Since the polio survivor
is usually unconscious during positioning, there
will be no report of pain that would normally
warn of potential damage. A number of polio
survivors have experienced severe back pain for
months post-op, and even permanent traction
injuries of nerves, after being placed for hours in
damaging positions. It would be advisable for
the patient to be awake during positioning on the
table to prevent such post-op complications.
POST-OPERATIVE CARE Cold. If the dose of anesthetic is carefully
regulated, a polio survivor's first post-op
experience will be waking in the recovery room.
Often, polio survivors awaken from anesthetic
shivering violently. Research has shown that
polio survivors are extremely sensitive to cold
because they have difficulty regulating their
body temperature. Polio survivors' automatic
(autonomic) nervous systems were damage by
the poliovirus from the brain (hypothalamus)
through the brain stem (reticular formation and
vagal nuclei) to the spinal cord
(intermediolateral columns).4-8
Polio survivors
cannot control the size of their blood vessels,
since the nerves that make the smooth muscle
around veins and capillaries contract were
paralyzed by the poliovirus. Therefore, polio
survivors' blood vessels open under anesthetic
and dump the heat of their warm blood into the
cold recovery room. Recovery room nurses need
to know about this problem and help polio
survivors stay warm. Additional blankets will
help, and the surgeon can even write an order for
a heated water blanket to be used in recovery.
Vomiting. Another post-op problem related to
brain stem damage is vomiting. As in anyone
who receives a general anesthetic, polio
survivors can develop nausea and vomit.
However, polio survivors are more apt to faint
(have vasovagal syncope and even brief
asystole’s) when they attempt to vomit.6 It is
very important that post-operative emetic control
be discussed with the anesthesiologist and
administered before polio survivors go to the
recovery room and that additional medication is
written as needed in the post-op orders.
SECOND TIME AROUND, MARCH 2020 – PUBLICATION OF BOCA AREA POST POLIO GROUP, BOCA RATON, FL 13
Choking. Yet another concern is difficulty
swallowing as the patient is awakening.9 Polio
survivors who are aware of having swallowing
problems, and sometimes in those without
apparent swallowing difficulty, cannot clear
secretions and may choke (or feel like they are
choking) when they are lying on their backs, still
half asleep, as the anesthetic is clearing. Polio
survivors' secretions need to be monitored in the
recovery room, and they should be positioned on
their side if possible so that secretions can drain.
Pain. The single most troublesome problem after
surgery is pain control. A number of studies
have shown that many surgical patients are
under medicated for pain. Under medication is a
serious problem for the post-polio patient since
two research studies have shown that polio
survivors are twice as sensitive to pain as those
who didn't have polio.8
Increased pain
sensitivity is apparently related to poliovirus
damage to endogenous opiate-secreting cells in
the brain (Para ventricular hypothalamus and
periaquiductal gray) and spinal cord (Lamina II
of the dorsal cord). 4,8
Rule of 2 for Pain: Polio survivors need 2 times the dose of pain
medication for 2 times as long, since polio
survivors are known to be extremely stoic and
very unlikely to abuse or become dependent
upon narcotics.
RECOVERY In keeping with the "get 'em up, move 'em out"
trend in medicine, there will be the tendency to
get polio survivors up and walking almost
immediately after surgery. This is not advisable
for a number of reasons. When polio survivors
reach the nursing unit, they may still be twice as
sedated from the anesthetic as are other patients.
Since polio survivors need a very clear head to
be able to control their weakened, polio-affected
muscles to stand and walk, a fuzzyheaded polio
survivor is at serious risk for falling. Even if a
polio survivor's head is clear, the anesthetic or
other drugs may have temporarily weakened or
even paralyzed the muscles needed to stand and
walk. What's worse, the surgery may have cut
muscles (especially abdominal muscles) that
substitute for muscles paralyzed by polio (it is
often muscle substitution that actually allows
polio survivors to stand and walk, even though
the muscles that are typically needed to walk
were permanently paralyzed). Not only will
post-polio patients be unable to stand or walk,
they may also be unable to even move to
position themselves in bed. Polio survivors may
also have low blood pressure after surgery that
could itself cause lightheadedness, fainting and
falls.
Rule of 2 for Recovery: Polio survivors should stay in bed 2 times longer
than other patients.
Under any circumstances, polio survivors
should get up slowly, first sitting up in bed, then
sitting with feet dangling, then getting into a
bedside chair with assistance, then standing with
assistance and finally walking with assistance
and appropriate assistive devices. With the
necessity of additional bed rest, anti-embolism
stockings and medication to prevent blood clots
may be a prudent precaution. Gentle physical
therapy in bed may be advisable to maintain
range of motion and for stretching, since polio
survivors are prone to developing painful muscle
spasms if they are not up and moving.
Rule of 2 for Length of Stay. Polio survivors
need to stay in the hospital 2 times longer than
other patients. While polio survivors may
become deconditioned with bed rest somewhat
faster than others patients, because of autonomic
nervous system damage, the dangers of getting
them up and walking too quickly far outweigh
those of moving too slowly. Polio survivors have
learned to be very aware of what their bodies can
and can't do. They are the best judges of when
they can move, stand and walk safely.
SECOND TIME AROUND, MARCH 2020 – PUBLICATION OF BOCA AREA POST POLIO GROUP, BOCA RATON, FL 14
Nursing Care and Nurse Caring. Polio
survivors often have difficulty merely being in
the hospital. They may have insomnia, anxiety,
and even have panic attacks. These symptoms
are easy to understand when it is remembered
that as young children, polio survivors were
ripped away from their families and admitted to
rehab hospitals for months or even years.2,10,11
Post-polio children underwent multiple surgeries
and painful physical therapy, procedures
administered often without explanation and
certainly without their consent.
Many post-polio patients have had
multiple experiences of psychological, physical
and even sexual abuse at the hands of hospital
staff. Questions or complaints about painful and
frightening therapies were not infrequently met
by staff anger or punishment. Patients report
having been locked in dark closets overnight
when they asked questions, spoke out or cried.
Necessary nursing care could be withheld for no
apparent reason. Many post-polio children were
slapped and some were actually beaten with
rubber truncheons by physical therapists to
"motivate" them to stand up and walk. 10
It is not surprising that polio survivors
can be terrified of again becoming powerless
patients at the mercy of hospital staff. Nursing
staff's appreciation of the childhood trauma polio
survivors experienced at the hands of medical
professionals, and taking a moment to actually
listen and respond to the real needs of the adult
post-polio patient, will go far toward making the
patient feel safer and more comfortable during
their stay.
RETURNING HOME
There is another "Rule of 2" when surgical
patients return home:
Rule of 2 for Work: Polio survivors need 2 times the number of days
of rest at home before they return to work or
household duties.
For all of the reasons described above, the
entire recovery process takes longer for polio
survivors. It is not uncommon for typically
overachieving, hyperactive Type A polio
survivors, who were taught as children to "use it
or lose it," to return to work or household duties
the day after they return home from the
hospital.10,11
Polio survivors must be encouraged
to rest and to return to activities slowly,
especially if they are somewhat deconditioned
and feel weaker or more fatigued post-op. Polio
survivors should ask their surgeon for a note that
allows them to stay home from work twice as
long as the typical patient.
POST-OP PPS? The 1985 National Survey of
Polio Survivors has shown that emotional stress
is the second most frequent cause of PPS (after
physical overexertion).11
Certainly, there are few
emotional or physical stressors more potent than
surgery. So, polio survivors should expect some
increase in fatigue and muscle weakness
resulting from the combination of the physical
and emotional effects of the surgery, anesthesia,
other medications, and bed rest.
However, only a handful of post-polio
patients permanently lose function after surgery.
Strength or endurance lost after surgery is
typically recovered. To aid recovery, gentle
physical therapy may be advisable. Passive
stretching, range of motion exercises and slowly
increasing endurance are more valuable than
muscle strengthening exercise, which can
actually cause muscle weakness. Especially if a
polio-affected part of the body has been operated
on (stomach, back, arms or legs), a physiatrist
who is thoroughly knowledgeable and
experienced about the care of polio survivors
and PPS should be consulted before surgery so
that a post-op rehabilitation plan can be in place.
A short stay in a rehabilitation hospital after surgery (especially after back or leg surgery) may
make polio survivors recovery safer, faster and
more complete.
Polio survivors need to remember the: Rule
of 2 for Feeling Better: Polio survivors need 2
times longer to feel "back to normal" again.
SECOND TIME AROUND, MARCH 2020 – PUBLICATION OF BOCA AREA POST POLIO GROUP, BOCA RATON, FL 15
CONCLUSION All of the "Rules of 2" are suggestions for polio
survivors and the surgical team; they are not a
substitute for specific information about the
individual patient and communication among all members of the treatment team, including the
patient. All polio survivors must be evaluated and
managed according to their individual needs.
Please take the time to read the following
references so that you will be fully knowledgeable
about and be able to help meet polio survivors'
special needs.
REFERENCES 1) Bruno RL. Ultimate burnout: Post-polio sequelae basics.
New Mobility, 1996; 7: 50-59.
2) Frick NM, Bruno RL. Post-Polio Sequelae: Physiological and psychological overview. Rehabilitation Literature, 1986;
47: 106-111.
3) Bach JR, Alba AS. Pulmonary dysfunction and sleep
disorder breathing as post-polio sequelae: Evaluation and
management. Orthopedics, 1991; 14: 1329-1337.
4) Bodian D. Histopathological basis of clinical findings in
poliomyelitis. Am J Med. 1949; 6: 563-578.
5) Bruno RL, Frick NM, Cohen J. Polioencephalitis, stress and
the etiology of Post-Polio Sequelae. Orthopedics, 1991;
14: 1269-1276.
6) Bruno RL, Frick NM. Parasympathetic abnormalities as post-polio sequelae. Archives of Physical Medicine and
Rehabilitation, 1995; 76: 594.
7) Bruno RL, Johnson JC, Berman WS. Vasomotor
abnormalities as Post-Polio Sequelae. Orthopedics, 1985;
8:865-869.
8) Bruno RL, Johnson JC, Berman WS. Motor and Sensory
Functioning with Changing Ambient Temperature in Post-Polio
Subjects. In LS Halstead and DO Wiechers (Eds.): Late Effects
of Poliomyelitis. Miami: Symposia Foundation, 1985.
9) Bucholtz DW, Jones B. Post-Polio dysphagia: Alarm or
caution. Orthopedics, 1991; 14: 1303-1305.
10) Bruno RL, Frick NM. The psychology of polio as prelude to Post-Polio Sequelae: Behavior modification and
psychotherapy. Orthopedics, 1991; 14: 1185-1193.
11) Bruno RL, Frick NM. Stress and "Type A" behavior as
precipitants of Post-Polio Sequelae. In LS Halstead and DO
Wiechers
(Eds.): Research and Clinical Aspects of the Late Effects of
Poliomyelitis. White Plains: March of Dimes Research
Foundation, 1987.
International Centre for Polio Education
POLIO SURVIVORS' PRE-OP CHECKLIST Give above article to surgeon and discuss:
1. Pre-op lung tests with measuring of carbon
dioxide.
2. Possibly having lower blood volume and blood
banking or bloodless surgery?
3. Authorization for a longer stay in the hospital if
needed.
4. Orders for post-op anti-vomiting medication. 5. Positioning and cushioning on the table during
surgery.
6. Orders for staying warm in the recovery room.
7. Difficulty clearing secretions in the recovery
room and on the nursing unit.
8. Orders for increased dose of pain medication. 9. Physical therapy for stretching and range of
motion in hospital.
10. Placing polio articles in the medical chart.
Give/discuss above article to anesthesiologist &
anesthetist:
1. Lung problems & THAT POLIO SURVIVORS CAN RETAIN CARBON DIOXIDE.
2. Lower dose of pre-op calming medication.
3. Using lower dose of anesthetic.
4. Longer-term paralysis of muscles with spinal
anesthetic and curare-like drugs.
5. Orders for post-op anti-vomiting medication.
6. Difficulty clearing secretions in recovery room.
Give this article to nursing supervisor and discuss:
1. Longer-term sedation with anesthetic.
2. Difficulty clearing secretions on nursing unit.
3. Orders for increased dose of pain medication. 4. Needing help in moving in bed and in the room. 5. Not standing or walking until you are fully
awake and able.
6. Anti-embolism stockings and anti-clotting
medication.
Meet/discuss with PPS physiatrist before surgery:
1. Post-op rehabilitation plan.
2. Physical therapy for stretching and range of
motion in hospital.
3. Possible admission to a rehab hospital before
going home.
4. Physical therapy for walking and increasing
endurance at home.
Source: http://www.postpolioinfo.com/library/surg.pdf
SECOND TIME AROUND, MARCH 2020 – PUBLICATION OF BOCA AREA POST POLIO GROUP, BOCA RATON, FL 16
HOW DAYLIGHT SAVINGS TIME
CAN DAMAGE YOUR HEALTH
As clocks ticked toward the end of
daylight savings time, many sleep scientists &
circadian biologists pushed for a ban because of
potential ill effects on human health.
Losing an hour of afternoon daylight
sounds like a gloomy preview for the dark
winter months, and at least one study found an
increase in people seeking help for depression
after turning the clocks back to standard time in
November – in Scandinavia. Here's what science
has to say about a bi-yearly ritual affecting
nearly 2 billion people worldwide.
Sleep Effects: Time changes mess with
sleep schedules, a potential problem when so
many people are already sleep deprived, says Dr.
Phyllis Zee, a sleep researcher at Northwestern
Medicine in Chicago. About 1 in 3 U.S adults
sleep less than the recommended seven-plus
hours nightly, & more than half of the U.S. teens
don't get the recommended eight-plus hours on
weeknights. One U.S. study found that in the
week following the spring switch to daylight
saving time, teens slept about 2 1/2 hours less
than the previous week. Many people never
catch up during the subsequent six months.
Research suggests that chronic sleep
deprivation can increase stress hormone levels
that boost heart rate and blood pressure, and
chemicals that trigger inflammation.
Heart Problems: It has also been shown
that blood tends to clot more quickly in the
morning. These changes underlie evidence that
heart attacks are more common in general in the
morning, & may explain studies showing that
rates increase on Mondays after clocks are
moved forward in the spring, when people
typically rise an hour earlier than normal.
That increased risk associated with the
time change is mainly in people already
vulnerable because of existing heart disease, said
Barry Franklin, director of preventive cardiology
and cardiac rehabilitation at Beaumont Health
hospital in Royal Oak, MI.
Studies suggest that these people return to
their baseline risk after the autumn time change.
Car Crashes: Numerous studies have
linked the start of daylight saving time in the
spring with a brief spike in car accidents, with
poor performance on tests of alertness, both
likely due to sleep loss. The research includes a
German study published this year that found an
increase in traffic fatalities in the week after the
start of daylight saving time, but no such
increase in the fall.
Internal Clocks: Circadian biologists believe ill health effects from daylight saving time
result from a mismatch among the sun "clock," our
social clock – work & school schedules & the
body's internal 24-hour clock.
Ticking away at the molecular level, the
biological clock is set by exposure to sunlight. It
regulates, i.e. metabolism, blood pressure &
hormones promoting sleep & alertness.
Disruptions to the body clock have been linked with obesity, depression, diabetes, heart
problems and other conditions. Circadian
biologists say these disruptions include tinkering
with standard time by moving the clock ahead one
hour in the spring.
Pressure to change: In the U.S., daylight
saving time runs from the second Sunday in March
to the first Sunday in November. It was first
established 100 years ago to save energy. Modern-day research has found little or no such
cost savings. Federal law allows states to remain
on standard time year round but only Hawaii and
most of Arizona have chosen to. Roenneberg and
Northwestern's Zee are co-authors of a recent
position statement advocating returning to
standard time for good, written for the Society for
Research on Biological Rhythms.
"If we want to improve human health, we
should not fight against our body clock, and
therefore we should abandon daylight saving
time," the statement says.
Reprinted from Sun Sentinel, 11/3/19.
Contributed by Jane McMillen, member.
SECOND TIME AROUND, MARCH 2020 – PUBLICATION OF BOCA AREA POST POLIO GROUP, BOCA RATON, FL 17
AUTOPSY OF A POLIO
SURVIVOR WITH
MUSCLE WEAKNESS
This isn't the first autopsy of a polio survivor
with PPS. But it does remind us that:
1) Progressive muscle weakness means
motor neurons are dying;
2) The original
poliovirus attack
killed motor neu-
rons not only in the
spinal cord area
that controlled this
man's left leg but
also caused "silent
damage" through-
out the spinal cord,
silent in that the
patient had no
muscle weakness in
the right leg or his arms after polio but did
have arm and leg muscle weakness beginning
at age 58;
3) Neuron death caused glial scars in the
spinal cord, the same type of scar our MRI
studies found in fatigued polio survivors'
brain activating systems;
4) NONE of the markers for ALS was found.
Conserve to preserve. The neurons you save
will be your own!
An autopsy case of progressive generalized
muscle atrophy over 14 years due to post-
polio syndrome.
Oki R, et al. Rinsho Shinkeigaku. 2015 Nov.
We report the case of a 72-year-old
man who had contracted acute paralytic
poliomyelitis in his childhood. Thereafter, he
had suffered from paresis involving the left
lower limb with no
relapse or pro-
gression of the
disease.
In his 60s he
began noticing
slowly progressive
muscle weakness
and atrophy in the
upper and lower
extremities. At 72,
muscle weakness
developed rapidly,
and he demon-
strated shortness of breath on exertion and
difficulty swallowing. He died after about 14
years from the onset of muscle weakness
symptoms.
Autopsy findings demonstrated
MOTOR NEURON LOSS and GLIAL
SCARS not only in the motor neurons in the
anterior horns, which were result of his old
poliomyelitis, BUT ALSO THROUGHOUT
THE SPINE. NO Bunina bodies, TDP-43 or
ubiquitin inclusions, which are seen in ALS,
were found.
The pathological findings in the
patient are considered to be related to the
development of muscle weakness.
Posted in The Post-Polio Coffee House on Facebook by Richard Bruno,
PhD, August 2019.
SECOND TIME AROUND, MARCH 2020 – PUBLICATION OF BOCA AREA POST POLIO GROUP, BOCA RATON, FL 18
COMMENTS
Ellen Pedersen, Harpelunde, Denmark:
Thank you so much for the calendar and the
pen. Denmark has great holidays without
Christmas snow.
Earl Feick, Vero Beach, FL & Plymouth,
WI: Received the news letter today. I have
been reading it via email. Would love to
attend one of your meetings. Enjoyed the
article from Warren Peascoe – I’m in the
same boat only worse because I drive my
van from my wheel chair. Looking into my
local paratransit as a back-up plan like he
suggests. Thanks for your note, Maureen.
Freeman & Lizzie Yoder, Middlebury, IN:
Enclosed is a donation and thanks for the
newsletters.
FOR SALE Pride GoGo portable scooter – separates into
five pieces; fits in most
trunks; new lock
cylinder & batteries. In
very good shape.
Asking $200 or best
offer. Call Marion at
201-681-6290, Boca Raton, FL.
MARK YOUR CALENDAR
Polio Network of NJ is hosting PPS in NJ –
Past, Present & Future presented by Richard
L. Bruno, PhD, Sunday, April 26, 2020,
Bridgewater Manor, Bridgewater, NJ.
www.pnnj.org or [email protected].
Colorado Post-Polio will host a Rocky
Mountain Getaway PPS educational
conference, Rocky Mountain Village Camp, Empire, CO, August 16-20, 2020. Contact Mitzi
720-940-9291 / [email protected]
Ohio Polio Network will host its semi-
annual Post-Polio Conference on Saturday,
September 19, 2020, Tuscora Park, New
Philadelphia, OH. Contact Brenda Ferguson
(330) 671-7103.
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MISSION STATEMENT
To help polio survivors become aware
that they are not alone and forgotten.
To share our thoughts and feelings with
others like ourselves.
To network with other support groups.
To share information and encourage each
other to carry on.
To educate the medical profession in
diagnosing and treating Post Polio
Syndrome.
To always maintain a positive attitude.
Boca Area Post Polio Group collects no
dues and relies on your donations. If you
would like to make a contribution, please
make your check payable to BAPPG.
Thank you for your support!
Maureen Sinkule Carolyn DeMasi
11660 Timbers Way 15720 SE 27 Avenue
Boca Raton, FL 33428 Summerfield, FL 34491
561-617-4450 352-454-6383
Jane McMillen, Sunshine Lady - 561-391-6850
Flattery will get you everywhere!
Just give us credit:
Second Time Around, Date
Boca Area Post Polio Group, FL
Disclaimer: The thoughts, ideas, and suggestions presented in this publication are for your
information only. Please consult your health care provider before beginning any new
medications, nutritional plans, or any other health related programs. Boca Area Post Polio
Group does not assume any responsibility for individual member’s actions.
BOCA AREA POST POLIO GROUP
11660 Timbers Way
Boca Raton, FL 33428
RETURN SERVICE REQUESTED
MONTHLY MEETING
11:30 – 1:30 PM
Second Thursday of each month
Except June, July, August & September
Spanish River Church
2400 NW 51 Street, Boca Raton (corner of Yamato Rd. & St. Andrews Blvd.)
Sunset Room of Worship Center
Entrance and parking on west side
E-mail: [email protected]
Website: www.postpolio.wordpress.com
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BOCA AREA POST POLIO GROUP A Ministry of Spanish River Church
FOUNDERS
Carolyn DeMasi Maureen Sinkule
COMMITTEE MEMBERS
Pat Armijo Jo Hayden
Theresa Daniti Jane Berman
Maureen Sinkule Jane McMillen
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& Sandy Katz
Proofers– Jane McMillen/Sheila Meselsohn
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