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January 22nd, 2012 – Our speaker will be
Doug Golden from Personal
Best – a training center/gym in DeLand
will be showing us some
exercises we can do from our chairs.
May 20th, 2012 –
November 18th, 2012 –
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CONTENTS
From Barbara
The Night the Mothers Marched On Polio
The Polio Experience
Smile a
What Polio Took Away
Whale or Mermaid?
Calmness In Our Lives
This Sound Familiar
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From
Barbara
Hope everyone’s holiday season (both
Chanukkah and Xmas) was filled with all good things and that 2012 will bring us
all good times and, especially, good health.
Well, as
most of you know, since our last newsletter and meeting I’ve gone on another
cruise – oops, sorry – two cruises… one on Holland America’s Noordam to the
Southern Caribbean, and the second on the Carnival Dream to the Western
Caribbean – all of which islands I’ve been to before. The Noordam left out of
My friend
Now, about
the ships – the Holland America Noordam is a smaller ship (only holds just
under 2000 passengers) but was very accessible.
The cabin, due to the fact that we had 2 scooters in it, was a little
crowded, but not unbearable. The food
was excellent (too excellent), the casino was just the right size and they even
had a black jack table I could sit at – not on the scooter (came out $150
ahead), the entertainment was good, not great, the service throughout the ship
was superb – you couldn’t ask for anything better. Getting off and then back on the ship, to do
the duty free shops, was no problem – the crew made sure the ramps weren’t too
steep to handle the scooters.
The
Carnival Dream is a huge ship holding just over 4000 passengers – it too was
very accessible. The cabin was slightly
larger than the Noordam and, of course, with only 1 scooter, no problem at
all. The food was good, the casino too
smoky (went in only twice – one $43 the first night and lost $44 the second),
the 2 nights I did go in, I had to sit on my scooter at the black jack table,
couldn’t get up on their chairs (they were very good though about making room
for the scooter – they all helped me get situated…. But I started coughing as
soon as I started to play so decided the better part of discretion was just not
to go gamble. The entertainment on this
ship was
All in
all it was a great month – 11 days on the Noordam and 8 days on the Dream. I would, however, recommend the smaller ships
for us over the bigger ones. My next
cruise is scheduled for the end of February, aboard the Norwegian Sun – we were
on the Sun in March 2011 and had such a great time that we immediately booked
it again.
That’s it
for now….
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FECPPSG Editor’s Note:- When I saw and read the following article in the Polio Echo,
it brought back a whole lot of memories….
Since I had polio as an infant (10 months old in 1935), I was a natural,
upon reaching the age of 8 and wearing a full leg brace, for the local movie
house to have me stand on stage while they did the “pitch” for dimes for the
Mothers’ March. After I got married I
became active in the Brooklyn branch of the March of Dimes as the Chairperson
for
========================================================
Reprinted from
Polio Echo Newsletter, September/October 2011
The Night the Mothers Marched on Polio
by Tom Hoover
The evening of January 16, 1950, you would have noticed
nothing out of the ordinary. It was an average Monday evening in
Every fire engine was rolled out in front of the station
house and the sirens turned up to full shriek. Huge searchlights came on, filling
the darkening sky. They came together to form a cone of light over the city.
Almost at the same instant tens of thousands of porch lights flicked on, the
whole city was a glow.
To a casual visitor all this must have seemed very strange
behavior on the part of a normally well-ordered town. But there was a reason for all this
commotion. It was the story of a community responding en masse to a great host
of mothers and a community opening its heart in a way in which few communities
ever had before.
On January 16th, Mothers spread out throughout the valley
and collected nearly $48,000 in one hour. In 1952, the Mother’s March on Polio
had become a national fundraising event. And that year over $10,000,000 dollars
were raised to fight polio. In 1954, Jonas Salk developed the vaccine for
polio.
On January 16, 1950 a community fought back. Mothers fought back.
This film was then distributed across the
Tom contracted polio shortly after he arrived in
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This is reprinted from the Polio
Regina “Polio Postbox”, Christmas, 2011,
The Polio Experience
By Dr. Mavis Matheson
The following is a speech that was presented by Dr. Mavis Matheson at
the Rotaract Banquet in October, 2011. She also presented it at the Open Forum
at our October Polio
For those of you who would like to
listen to the song "Helpless" by Neil Young that Mavis played, just
follow these instructions:
Google "youtube"
Enter "Neil Young
Helpless" in the box and click "Search youtube.com"
A number of choices come up
Click on "The Band & Neil
Young Helpless - YouTube"
It should start playing.
Introduction
Dr. Mavis Matheson had polio in
1952. She recovered and lead a busy life until the early 1990s when she developed
Post-polio Syndrome. She has published several articles on Post-polio
Syndrome. She is here to tell us a
little bit about “The Polio Experience”.
Please help me welcome Mavis
Matheson.
The Polio Experience
Mr. Chairman, Ladies and Gentlemen
I am the face of polio in
Tonight I'll try to help you
understand the experience of Polio and post-polio syndrome and I'll say a few
words about polio eradication.
Polio is a nasty disease caused by a
virus. If you haven't had polio vaccine
and are exposed to the polio virus you may not have any symptoms for a couple
of weeks. Even then you may have only a mild, flu-like illness but if the virus
gets into your nervous system, it causes pain, fever and paralysis.
What was it like to have paralytic
polio? I was only 1.5 years old so I
don't actually remember any details of my polio experience. Every person is different
so every polio experience was different. Some even maintained a sense of
humour.
Polio survivor Michael B wrote about
his first night in hospital. The nurse asked “Any pain?” He responded “No,
thank you”.
Neil Young (5) had polio
in the
Helpless (live at the Last Waltz
concert,
1976 with "The Band")
by Neil Young
Back-up vocals by Joni
Mitchell
There is a town in north
With dream comfort memory
to spare,
And in my mind I still
need a place to go,
All my changes (polio) were there.
Blue, blue windows
behind the stars, (lying in bed paralysed windows were our
only connection to the outside world)
Yellow moon on the rise,
Big birds flying across
the sky,
Throwing shadows (fear, pain & the
unknown) on our eyes.
Leave us (spoken?)
Helpless, helpless,
helpless (how it feels to be paralysed
with polio)
Baby can you hear me now?
The chains are locked and
tied across the door, (Isolation ward)
Baby, sing with me
somehow.
Blue, blue windows behind
the stars,
Yellow moon on the rise,
Big birds flying across
the sky,
Throwing shadows on our
eyes.
Leave us (spoken?)
Helpless, helpless,
helpless. (how it feels to be paralysed
with polio)
Helpless, helpless,
helpless.
Helpless, helpless,
helpless.
Helpless, helpless,
helpless.
I wondered if the song
was too long but the polio experience lasted not minutes, or hours or days but
weeks, months or even years.
As you lie helpless with
polio, your nerves and muscle die. By
the 1950s, there were rehabilitation programs that helped polio survivors to
get their function back. Because there was a stigma attached to having polio,
survivors worked very hard to appear normal.
Imagine your house being invaded by
mice, Mice that nibble away at the wiring destroying some wires and damaging
others. You finally get rid of the mice
but many areas of your home no longer have enough electrical connections. To solve the problem, you run poor quality
extension cords from the outlets that still work (though they may be damaged)
to areas that are “dark”. This is how with exercise and hard work polio
survivors used the remaining “outlets” to their absolute maximum. Surviving
nerves ended up branching out to control many times the normal number of muscle
fibres.
This analogy may also help you
understand why everyone who survived paralytic polio has different problems and
different areas of weakness. When you
run a damaged system at absolute maximum for a long time, eventually things
start to break down. After working hard to get as much function as possible
back, many polio survivors find their weakness is returning.
That is Post-polio syndrome. By
definition, someone who had polio, regained function and was stable for 20 or
30 years gradually develops onset of progressive and persistent new muscle
weakness or abnormal muscle fatigability (decreased endurance). These symptoms
must persist for at least a year. (Exclusion of other neuromuscular, medical,
and orthopaedic problems as causes of symptoms is also required).
This is very scary to someone who
experienced being “Helpless” because of polio.
There are no treatments that can
stop deterioration or reverse the deficits caused by the syndrome.
You can only slow the process by not
overloading the circuits.
In the early 1990's, I began to
develop weakness in my left leg, I couldn't run a kilometre every day any more
– my leg would just quit. I pushed
myself harder and over the next year I got weaker and weaker. I had to give up my medical practise because
I was too tired to think clearly.
By the time I got to a doctor in
When you buy a scooter you need to
decide what you want it to look like. Should it be black to coordinate with
your Goth look, pink and sparkly for a Barbie look. Maybe cammo with a gun rack
and dice. But this is
Even with my scooter, I was still
exhausted most of the time. It wasn't until 10 years later that I went to the
So why should we work to eradicate
polio?
1.
Self
interest – Polio is only a plane ride away.
If you are not vaccinated, you can carry and spread the virus for 2
weeks before showing any symptoms and 8 weeks in total. If we drop our vaccine programs, polio will
spread and I hope I've told you enough about polio so you understand how
devastating that could be for individuals and for our infrastructure. Remember
the 1,205 cases of polio in SK in 1952.
(Think of the problems created by 251 SARS cases in
2.
Because
we can – Only people get polio. There are no animal populations for polio to
hide in, no swine polio or bird polio. We have a
cheap, effective vaccine. If we vaccinate everyone it is actually possible to
eradicate polio.
3.
It
is the right thing to do.
We don't have to be helpless any
more. After 25 years of hard work, Rotary and its partners have reduced polio
by 99%. They are on the brink of eradicating polio, but a strong push is needed
now to root it out once and for all. It is a window of opportunity of historic
proportions. We, the Gates Foundation and Rotary International can eradicate
Polio. Let's do it.
FECPPSG Editor’s Note:- Just to let you know that Joni Mitchell who did the back-up
vocal for Neil Young is also a polio survivor.
Also, you may question the
correctness of the spelling of some words, but they are correct – it is the
English way.
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Reprinted from
Smile
--- a lot.
It
just might save your life.
One of the keys to a longer, healthier life just might be your smile. In a
recent study of more than 6,000 adults over 50, scientists found that those
with sunny dispositions had a significantly reduced risk of stroke. Optimistic
people tend to make healthier choices about diet and exercise, researchers
speculate; some findings also suggests positive thinking has a direct influence
on how well your body works.
Stroke is a leading cause of death in the
Shift one perspective at a time.
Pick a part of your life you tend to cast in an unfavorable light — your
daily commute, for example — and focus on fixing your thinking there first.
Instead of working yourself into a tizzy sitting in traffic, think of it as
uninterrupted alone time to plan something fun for the upcoming weekend or as
more time to listen to your favorite radio station.
Let yourself laugh.
You’ll feel less stressed, even during difficult times. And that may help
protect against heart attacks, research suggests.
Hang out with happy people.
It’ll rub off on you — plus, those are the friends you can depend on when
you’re feeling down.
Negative thoughts,
positive talk.
Don’t say anything to yourself that you wouldn’t say to someone else. And
when a negative thought enters your mind, evaluate it rationally and give it a
positive twist. For example, instead of thinking “I’ve never used this computer
program before,” tell yourself it’s a perfect chance to learn something new.
FECPPSG Editor’s Note:- Always knew a smile was better
than a frown – also, as the saying goes, “it takes less muscles to smile than
it does to frown.”
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Reprinted from
What polio took away:
Survivors seek the records that may
fill in gaps in childhood
9:49 PM, Jun. 11, 2011 |
Somewhere, someone may have the
records. In some file cabinet, warehouse or library.
For a survivor of what was once a
whispered horror -- polio -- those documents might fill in gaps of a
childhood fractured by comas and surgeries, isolation rooms and iron lungs,
braces and grueling rehabilitation.
They also might provide clues for
doctors trying to understand postpolio syndrome, a disorder that develops
decades after the virus is gone. It happens when disease-weakened nerves and
muscles -- and even their stronger counterparts -- finally give out. Many
survivors are now returning to the braces and crutches they had worked so hard
to leave behind.
Bruce Sachs, one of
Sachs, 71, of
"I think a lot of it goes to
the fact that for so many years, we denied it," he said. "Now we all
want to know more, to fill in the blanks from something that we tried to leave
in our past."
Polio: When a nightmare comes back
Dianne Dych-Sachs was in denial
until her ankle snapped. For years, the
medical technologist noticed her muscles weakening and her body tiring much
earlier than her colleagues'. Sure, she had heard of postpolio syndrome; her
sister -- also a polio survivor -- had sent her clippings and research
articles.
But after all these decades, could
her childhood polio still exact such damage?
"You're afraid. You're afraid
to go back into braces," the 59-year-old
But the syndrome, for which there is
no cure, leaves no choice for up to half of the 440,000 polio survivors in the
It's unclear what triggers it. The
syndrome can include new pain or weakness and daytime fatigue. It's generally
diagnosed when doctors rule out other medical problems, said Dr. Ann Laidlaw,
who cares for polio survivors at the
The poliomyelitis virus is long gone
from their bodies, of course, but once-weakened nerves and muscles are finally
giving out. Some theorize that to cope with the original disease, the body
rewired some neurons to muscles that were weakened or disabled during the
original infection. Those nerves served those muscles well for years, but
essentially were overworked, Laidlaw said.
"It's like hooking up wires to
50 different appliances instead of three. After a time, they burn out,"
Laidlaw said.
As they deal with the syndrome,
survivors search for medical records that are a half-century or more old.
They've had limited success individually but are beginning to share stories and
dig deeper through the Michigan Polio Network.
Survivors hope the records provide
insight into treatment for the syndrome, though doctors are skeptical. But the
records still might offer an important starting point for doctors born into a
postpolio world, said Bonnie Levitan of Grosse Pointe. When Levitan's right hand began losing its
grip several years ago and her fingers began freezing in awkward directions,
doctors were perplexed.
Her 1951 admissions records from
Children's
Locating the decades-old records is
like the proverbial search for a needle, but it's unclear where the haystack
moved or even whether it exists anymore because of the many mergers and
closings of hospitals over the years.
Plus, state law allows for medical records to be destroyed after seven
years.
Children's
Some documents and pictures from the
Some patient records ended up in
storage lockers or transferred as one doctor left his or her practice for
another.
When it comes to finding records,
"some are lucky, some are not," said Sue Hoyt, a staff member who
fields survivor's calls at the Minnesota-based Sister Kenny Foundation.
Trying to be normal
A return of physical failings is
especially difficult for survivors still haunted by childhood horrors -- they
were sometimes cut off from their parents by doctors who felt the visits were
disruptive.
Many remember spinal taps and hot
wool soaked in boiling water and wrapped around their bodies to try to improve
circulation and relax muscles.
"There are survivors who, to
this day, can't stand the smell of wet wool," said Levitan, who remembers
her hospital isolation room and the sight of her parents looking at her through
a tiny round window in the door.
The goal as a kid with polio was
clear: Be a "passer," said Levitan, a retired high school
paraprofessional. "Your parents wanted you out of the hospital, to come
back and become a passer.... You wanted to become as normal-looking as
possible, to pass for normal." At
the St. John Providence Post-Polio Clinic in
Some happily recall days at summer
camps for disabled children, support through the national March of Dimes
campaign and kind neighbors. They bring photos. Sometimes they cry. It takes a
while, he said: "A lot of them are in denial. They were ostracized as
children."
At last, a cure
In 1952, fear surged like never
before: Reported cases peaked at 57,628 that year. In
U-M epidemiologist Dr. Thomas
Francis Jr. had been given $7.5 million by the National Foundation for
Infantile Paralysis -- money primarily collected through the March of Dimes --
to put Dr. Jonas Salk's breakthrough polio vaccine through field tests. The
announcement was carefully guarded; the information was delivered by police
car.
The
Later, Salks' vaccine would be
replaced by Albin Sabin's vaccine, carrying the live poliovirus and licensed in
1960. The two men would be forever credited with essentially eradicating the
virus from the country and most of the world. The last case of polio reported
in
All this was too late for Dych-Sachs
and Debby Bookout, then 13-month-old twins from what is now Eastpointe.
Dych-Sachs was diagnosed and hospitalized. A visiting nurse later saw her
sister limping.
Both spent their childhood in braces
paid for by the March of Dimes, the campaign created by another polio survivor,
President Franklin D. Roosevelt.
Now Bookout
is in a wheelchair and legally blind. Those and other health problems, she
said, are part of tangled diagnoses of postpolio syndrome and multiple
sclerosis. The latter -- she's convinced -- was brought on because of her
polio-weakened body she had tried so hard to strengthen decades ago.
"Your dream as a kid is growing
and being out of these braces," she said.
Dan Matakas, 74, who contracted
polio when he was 2 years old and later became a designer for Ford, remembers
the day he ditched his crutches. He had just started at
He has always been active -- using
his stronger muscles when he swam or bowled to compensate for those weakened by
polio. But within the past year, he has noticed he can no longer lift his
stronger, left leg to his bike pedal. He
uses crutches again.
The drive that was built into kids
with polio, he said, also makes them unwilling today to give up easily on a
search for medical records.
"A lot of polio survivors have
a stubborn streak or a survival streak," he said. "Polio was a black
mark on you, and so you tried to be as normal as you could. If they told us we
couldn't do something, we'd find a way to do it."
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The following was sent by our member, Ray Walsh –
Thanks, Ray.
WHALE OR
MERMAID…
Recently, in a large city in
A middle-aged woman, whose physical characteristics
did not match those of the woman on the poster, responded publicly to the
question posed by the gym.
To Whom It May Concern,
Whales are always surrounded by friends (dolphins,
sea lions, curious humans.) They have an
active sex life, get pregnant and have adorable baby whales.
They have a wonderful time with dolphins stuffing
themselves with shrimp. They play and swim in the seas, seeing wonderful places
like Patagonia, the Bering Sea and
the coral reefs of
Whales are wonderful singers and have even recorded
CDs. They are incredible creatures and
virtually have no predators other than humans. They are loved, protected and
admired by almost everyone in the world.
Mermaids don't exist. If they did exist, they would be lining up
outside the offices of Argentinean psychoanalysts due to identity crisis. Fish or human?
They don't have a sex life because they kill men who
get close to them, not to mention how could they have sex? Just look at them
... where is IT?
Therefore, they don't have kids either… Not to
mention, who wants to get close to a girl who smells like a fish store?
The choice is perfectly clear to me: I want to be a whale.
P. S. We are in an age when media puts into our
heads the idea that only skinny people are beautiful, but I prefer to enjoy an
ice cream with my kids, a good dinner with a man who makes me shiver, and a glass of wine with my friends. With
time, we gain weight because we accumulate so much information and wisdom in
our heads that when there is no more room, it distributes out to the rest of
our bodies.
So we aren't heavy, we are enormously cultured,
educated and happy. Beginning today,
when I look at my butt in the mirror I will think, “Good grief, look how smart
I am!”
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From a life-long friend – Thanks,
Judy.
CALMNESS IN OUR LIVES
I am passing this on to you because it definitely works and we could all use a
little more calmness in our lives. By
following simple advice heard on the Oprah show, you too can find inner peace.
Dr. Oz proclaimed, 'The way to achieve inner peace is to finish all the things
you have started and have never finished.'
So, I looked around my house to see all the things I started and hadn't
finished, and before leaving the house this morning, I finished off a bottle of
White Zinfandel, a bottle of Tequila, a package of Oreos, the remainder of my
old Prozac prescription, the rest of the cheesecake, some Doritos, and a box of
chocolates. You have no idea how good I feel right now!
Pass this on if you know anyone you
think might be in need of inner peace.
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Don’t remember who sent this one in
– but it’s a goodie….
This sound familiar –
I woke up,
I lifted my arms,
I moved my knees,
I turned my neck....
Everything made the same noise:
'CrrrrrrrrrraaaaaaaaaaaaaccccK!'
....I came to a conclusion:
I am not old,
I am crispy!!!
FECPPSG Editor’s Note:- Now don’t tell me you
don’t feel that way when you get up every morning….. I know I do!!!
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Looking forward to seeing everyone
of our members sometime in 2012 and wishing all the best year that they have
ever had.
Barbara
♥~♥~♥~♥~♥~♥~♥~♥~♥~♥~♥~♥~♥~♥
FLORIDA
EAST COAST POST-POLIO SUPPORT GROUP
12 Eclipse Trail /
386-676-2435
/ e-mail address: bgold@iag.net
386-676-2436
NOTE:- Meeting is on 4th Sunday – please mark your
calendar accordingly.
DATE: Sunday, January 22nd,
2012
TIME: 1:00 – 4:00 PM
PLACE: Red Lobster Restaurant
Right off I-95 – Exit 261–
(head EAST for about 1/4 mile)
PROGRAM: – Our speaker will be
Doug Golden from Personal Best –
a training center/gym in DeLand
who will do chair exercises with us
Cost of the Luncheon is
$13.00 all inclusive. As usual we will have a choice of several
different
menu items.
Please send in your reservation tear sheet and check
no later than January 18th, 2012
Any questions call
Barbara at 386-676-2435.
======================================================================================
R E S E R V
A T I O N F O R M
January 22nd, 2012 Luncheon Meeting
Name:- _______________________________ Phone
No.:- _________________
Number of People Coming:- _________ Number in Wheelchair(s):- ___________
Amount of Check Enclosed:- ________________ @ $13.00 per person
Make check payable to
and mail same to:
FLORIDA EAST COAST POST-POLIO SUPPORT GROUP
12 Eclipse Trail
--
01/2012
♥~♥~♥~♥~♥~♥~♥~♥~♥~♥~♥~♥~♥~♥
DUES FOR 2012- Please take a look at your mailing label - on
it you’ll see the month and year we received your 2011 dues, i.e., 01/2011
means it was received in January 2011, so your 2012 dues is due in January 2012. If your mailing label has the year first and
then the month, i.e., 2011/01 it means that you indicated to us in January 2011
that you wanted to receive the newsletter but paid no dues. That’s OK as we still believe that anyone who
wants information should receive it – but we do need you to return the tear
sheet with either the “Dues” box checked or the “Keep me on the Mailing List”
box checked.
Your dues
covers the supplies we need to send out the information packets to all
inquiring about Post-Polio Syndrome, any other correspondence we do, and
postage for publicity and for the out-of-country (25) newsletters that we send
out. We’re fortunate in that the “Free
Matter for the Blind and Physically Handicapped” status takes care of the
postage for the over 400 newsletters sent out within the United States. We network with approximately 60 other
support groups throughout the
***********
WHEN YOU MOVE -- PLEASE be sure to send us your new address. Sometimes the post-office will return the
newsletter to us with a “forwarding period expired” notice on the front with
your new address but most of the time they are just returned to us with “address
unknown” on it. SO, if you want to
continue receiving the newsletter it is UP
TO YOU to make sure we have your new address.
========================================================================================
2012 DUES/MAILING LIST
____ Dues Enclosed ____ Keep me on mailing list
If sending dues, please make Check
($5.00) Payable to and Mail to:-
FLORIDA EAST
COAST POST-POLIO SUPPORT
GROUP
12
Eclipse Trail,
NAME:-
__________________________________________________________
ADDRESS:-
_______________________________________________________
E-MAIL
ADDRESS:-__________________________ FAX #:- _______________
TELEPHONE NO:-
Home _______________________ Office ________________
Date of
Birth:-_________________ Wedding
Anniversary:- _________________
Name and Date of Birth of
Spouse:-_____________________________________
01/2012