*********************************************
*********************************************
MEETING
NOTICE
March
20th, 2011 – Our speaker will be one of
the physical therapists from
Hospital’s
Post-Polio Clinic.
June 12th, 2011 –
September 18th, 2011 – Dr. Armand Zilioli
November 20th, 2011 –
**********************************************
CONTENTS
From Barbara
Forgetter be
Forgotten
Treating Polio –
Now and in the Future
Does This Sound
Familiar?
As I’ve Aged
Polio Survivors
Moving Forward
Responses to Dr.
Henry
Professional
House Cleaning
Some Thoughts
About Polio
Here’s the Way it
Should Be
Paul Damascus and
Dr. Salk
**********************************************
FROM
BARBARA
It’s been a long,
cold winter this year. However, I’m
still glad to be down here in the “
However, I am
going on another cruise before our March meeting – going to the
Our May meeting
will be in June as I will be on
**********************************************
Our thanks to another good friend,
Dr. Jerry Axelrod for sending this to us.
Unfortunately, it really hits home.
Barbara
Forgetter Be Forgotten?
My forgetter's getting
better,
But my rememberer is broke
To you that may seem funny
But, to me, that is no joke
For when I'm 'here' I'm wondering
If I really should be 'there'
And, when I try to think it through,
I haven't got a prayer!
Oft times I walk into a room,
Say 'what am I here for?'
I wrack my brain, but all in vain!
A zero, is my score.
At times I put something away
Where it is safe, but, Gee!
The person it is safest from
Is, generally, me!
When shopping I may see someone,
Say 'Hi' and have a chat,
Then, when the person walks away
I ask myself, 'who the hell was that?
Yes, my forgetter's getting better
While my rememberer is broke,
And it's driving me plumb crazy
And that isn't any joke.
CAN YOU RELATE???
FECPPSG Editor’s Note: I think I had this
in a newsletter sometime back, but my “forgetter” has forgotten….
**********************************************
The
following article was printed in its entirety in the printed copy of this
newsletter. However, we have been asked
not to put it on our web-site. It can be
read can be read and printed at the following:
http://www.ranchoppsg.com/2011-2_newsletter.pdf
This is an
excellent article and should be read.
Treating Polio –
Now and in the Future
Including research from
around the world
With Susan L. Perlman, M.D.
Clinical Professor of
Neurology
Presented at the
Editorial assistance by
R. Daggett and S. L. Perlman, MD
**********************************************
This came
to us by e-mail from one of our
Does This Sound Familiar?
An older
couple is lying in bed one morning. They had just awakened from a good night's
sleep.
He takes her hand and she responds, 'Don't touch me.'
'Why not?' he asked.
She answered, 'Because I'm dead.'
The husband asked...'What are you talking about? We're both lying here in bed
together and talking to one
another!'
She said,
'No, I'm definitely dead.'
He
insisted, 'You are not dead. What in the world makes you think you're dead?'
'Because I woke up this morning and nothing hurts.'
FECPPSG Editor’s Note:- Wouldn’t it be wonderful to wake up every morning with no
aches and/or pains????
**********************************************
This computer age is wonderful –
friends from near and far send you items that you just want to pass on to
others. Here’s another e-mail item
thanks to several friends.
AS
I’VE AGED
As I've aged,
I've become kinder to myself, and less critical of myself. I've become my
own friend...
I have seen too
many dear friends leave this world too soon; before they understood the
great freedom that comes with aging.
Whose business
is it if I choose to read or play on the computer until 4 AM or sleep
until noon? I will dance with myself to those wonderful tunes of the 60
&70's, and if I, at the same time, wish to weep over a lost love... I will.
I will walk the
beach in a swim suit that is stretched over a bulging body, and will dive into
the waves with abandon if I choose to, despite the pitying glances from
the jet set.
They, too, will
get old.
I know I am
sometimes forgetful. But there again, some of life is just as well
forgotten. And I eventually remember the important things.
Sure, over the
years my heart has been broken. How can your heart not break when you lose
a loved one, or when a child suffers, or even when somebody's beloved pet gets
hit by a car? But broken hearts are what give us strength and understanding and
compassion. A heart never broken is pristine and sterile and will never
know the joy of being imperfect.
I am so blessed
to have lived long enough to have my hair turning gray, and to have my
youthful laughs be forever etched into deep grooves on my face. So many have never laughed, and so many have
died before their hair could turn silver.
As you get
older, it is easier to be positive. You care less about what other people
think. I don't question myself anymore…
I've even earned the right to be wrong.
So, to answer your question, I like being old. It has set me free. I like
the person I have become. I am not going to live forever, but while I am still
here, I will not waste time lamenting what could have been, or worrying about
what will be. And I shall eat dessert every single day…
(if I feel like it).
**********************************************
Polio
Survivors moving forward
Aging with
a disability
This is a new post-polio
support group which has opened up in
Their next two meetings
will be on Tuesday, March 15 and Tuesday, April 12.
Meetings are held at Bay
Area physical Therapy and Wellness, 3637 Cortez Rd, Suite 103, Bradenton, Fl.
Meetings are held from 1:15 till approx 2:30
For further information
call: Marge Torre @ 941 756 3883
FECPPSG Editor’s Note:-
I
met Marge at the first post-polio conference I went to in 1987 and have been
friends with her ever since. She is one
of the most knowledgeable post-polio survivors I know.
**********************************************
RESPONSES TO
DR. HENRY’S ARTICLE
In the last newsletter we had an
article by Dr. Henry Holland about Polio and Discrimination, basically while in
our growing years, and early work experience years – I asked for members to
send in their feelings…. I received ONE
– here it is…. My comments will follow.
========================================================
Barbara, my experiences pertain to
the last newsletter. From Dr. Henry’s desk, about Polio and discrimination.
Question # 1
Yes, had problems getting a job, because of my limp.
Question #2
Yes, I was called a cripple by an older lady, when we
bought our Bi-Level home. She could not understand why buy a house with
steps. In 1973 I had no problems with going up or down steps.
Question # 3
Yes, had problems getting a date. But had a group of
super high school friends I went out with.
Question # 4
No I never received more attention.
My family treated me the same as my sister. I walked, did exercises etc.
Question # 5 The only attention I
got, was when I went with a relative on a one hour train ride three times a
week to see a Doctor, who put me in a tub with hot water for an hour, and
wrapped hot blankets around me. I did love the train ride, and the lunches.
Question # 6 Can’t recall being the
subject of pity from others.
Question # 7
Having a limp stopped me from
getting the job I was looking forward to. Working in a book store – printing
books.
Question # 8
Not very much.
======================================================
Now, my response
1. As a survivor of polio do you
feel you experienced any form of discrimination or prejudice?
As I’ve mentioned previously, I
contracted polio at 10 months of age, wore a full leg brace on my right leg
until 1948, so I never knew what it was like NOT to be disabled. In my case I don’t really think it was
“discrimination” or “prejudice”, during my adolescent years I think it was a
matter of not knowing how to treat someone who was “different”. I was the only handi-capped person in the
elementary school I attended. When we
moved to
My friends always accepted me for
who I was not what I was (a polio survivor).
I did start to feel some
discrimination when I went looking for a job.
Prospective employers would see me walk in limping, and start asking
questions as to things I could or could not do – remember this was the early
1950’s, 4 decades before the ADA came into effect. Barbara being Barbara turned down all jobs
offered to her by employers who initially asked those types of questions. The job I did take was one where they gave me
a steno test and a typing test and asked no questions.
Even though, the
2. If you had a visible physical
disability from polio (atrophy, limp, orthotic devices, curvature of spine or
limbs, etc), were you ever called a “cripple” or overheard comments to that
effect?
As I wore a long leg brace up until
I was 13 and then walked with a very noticeable limp, I did hear many comments.
The ones that hurt the most were from strangers…. Mothers walking with their
son and/or daughter who when asked “Why is she walking like that?” were then
answered “Because she didn’t listen to her mother.” This hurt more than anything else that could
be said to me – to have a child think that by not listening to their parent
they would wind up either wearing an orthotic or limping was worse that being
discriminated against.
The only times I can recall being
called a “gimp” was by my very own brother – who did it, believe it not,
lovingly… to this day he’ll still call
me that when he wants to tease me.
3. Even if you have no objective
evidence of being the victim of prejudice or discrimination, did you ever
“feel” that way?
Yes, I did – if you read the last
two paragraphs of Question 1, you’ll know why.
Also, as Dr. Henry states in “3” I
wasn’t asked out on too many dates. In
groups, yes – I was accepted. In
one-on-one dating, that was another story.
I was asked out occasionally, but not as often as my friends – that is
until I met my husband, the summer I graduated from high school.
5. If you did get more attention,
did you like the attention or did you try to avoid the attention?
I honestly don’t remember getting
more attention as a child or teenager, if I had, I would have been very
embarrassed by it. Nowadays I do find
people paying more attention to me and that’s mainly when I’m in the scooter –
I’ve learned not to be embarrassed, but just give them a smile and a “Thank
You!” when they offer assistance.
6. Did you ever feel you were the
subject of pity from others?
NO!!
I do find now that my friends are there to “help” me when I need a hand,
i.e., going up or down a curb or step. It’s offered not as pity, but as being a good
friend.
7. Did you fell that being a
survivor of polio ever hampered you in the work place?
No, not really – once I took a job
and my employers saw what I could accomplish, I never felt hampered. As I mentioned earlier, there were interviews
where I was questioned about what I could or couldn’t do – those jobs I didn’t
take even if offered to me.
8. Did you feel that being a
survivor of polio hampered you in social settings?
Here I have to say, “YES!” I would always stay in the back, waiting for
someone to talk to me. I couldn’t go on
the bike rides, skating parties and other such activities. When it came to dancing, I could do a slow
dance, but not a fast one (such as the Lindy, or the Jitter-bug) so there I was
in the back again.
Well, those are my answers to Dr.
Henry’s survey. How did you answer the questions?
**********************************************
Our member,
Marion Schoeller, sent this to us. I
“clicked” on the website and this is true!!!
The website is very simply the title of this article. Thank you,
Professional House Cleaning Maid Services
For Women With Cancer
If you are fortunate enough to be
free of cancer, please pass this on to someone who may need the service.
If you know any woman currently
undergoing chemotherapy, please pass the word to her that there is a cleaning
service that provides FREE housecleaning - once per month for 4 months while
she is in treatment. All she has to do is sign up and have her doctor fax a
note confirming the treatment. Cleaning for a Reason will have a participating
maid service in her zip code area arrange for the service. This organization
serves the entire
**********************************************
How apropos – the following just
came, via e-mail, from Marion Schoeller – once, again, Thanks….
I just ordered my free shipping kit from the
post office online.
Some of their other services
include: stamp purchase, shipping boxes, pass-ports, mail hold, free supplies
and free package pick up.
You can't get any more accessible
than not having to leave your home at all to take advantage of the
above services.
Here’s their website: http://www.usps.com
**********************************************
The following is reprinted from Polio Deja View, Central Virginia Post-Polio Spt Grp, August-September
2010. Reprinted from “Polio Outreach of
Some
Thoughts about Polio
The majority of patients seen in the
Post Polio Clinics throughout the nation are those who contracted polio during
1950-56, the time of the last major epidemic before the vaccines were
developed. The current range of the
group, assuming polio was contracted before age 25, is 54 to 85 years of
age. There are now 6-7,000 people from
this group in the state of
The concerns expressed by these patients
in almost all of the cases center around a decrease in function compared to
function skills they achieved two to five years after the attack, sometimes up
to 10 years later. The function
decreases experienced for some began to occur about 20 or more after initial
attack.
The areas of function that are
diminished might include walking, stair climbing, posture maintenance, transfer
skills (e.g. getting out of bed, on and off chairs), personal hygiene skills
(e.g. bathing, toileting), dressing skills, eating skills, swallowing,
breathing, avoidance of falls, and performance of responsibilities at home,
work, school, and the community. The
symptoms associated with these function losses, can include fatigue, reduced
endurance, pain, and a perception of weakness.
The cause of the function losses is
multifactorial in most patients. These
factors include: (1) the severity and location of muscles completely or
partially paralyzed; (2) the degree of joint destruction and deformity
secondary to the lost muscle strength at the joints, particularly at the knee,
ankle, foot, hip, shoulders, hand and spine.
Additional factors include diseases
acquired over time that are not directly related to the original polio but
which can magnify the functional losses.
These factors include (3) thyroid disease, (4) heart disease, (5)
pulmonary disease, (6) cancer, (7) diabetes, (8) other neurological and muscle
diseases, (9) osteoarthritis, (10) significant weight gain, (11) stroke, (12)
the effect of injuries and (13) depression.
For some patients, the polio residual is not the primary factor in
causing function losses and associated symptoms.
A major additional factor
contributing to the development of the function losses is: (14) the normal
aging process that begins at about age 25 to 30, and affects all of us whether
we had polio or not.
The effect of this aging process for
those with significant polio muscle weakness can lead to a profound effect on
these muscles causing added function loss.
The explanation for this is as follows:
The nerve fibers that cause muscle
contraction originate in the spinal cord.
Each muscle is served by many of these nerve fibers. Within a muscle, many individual muscle
fibers attach to each individual nerve fiber.
The number of nerve fibers per muscle and number of muscle fibers that
are attached to each nerve fiber varies with the size and location of the
muscle.
In acute polio, the virus attacks
the cell bodies of the nerve fibers.
Some escape the attack, some cease to function but then recover and some
die. Therefore the muscle involved can
end up totally paralyzed, partially paralyzed or fully recover. The partially paralyzed muscle ends up with
less than the normal number of nerve fibers and hence less working muscle
fibers. It is this group that is
affected by the normal aging process.
The normal aging process causes all
of us to lose about 1% of the nerve fibers to a muscle per year. In partially paralyzed muscle that already
has a reduced number of nerve fibers, such additional losses can leadto a
reduced ability to perform ordinary daily functional activities, and the
appearance of fatigue and pain when performing activities that were not
fatiguing or painful before.
The therapeutics used in post-polio
clinics vary from patient to patient, but all are directed at reestablishing or
delaying the losses in the functions enumerated above. The therapeutics may include:
1.
Bracing as needed to substitute for weakened muscles or correct
deformity with appropriate design, fitting and training.
2.
Appropriate prescription of walking and ambulation aids.
3.
Suggestions to modify the environment to reduce energy costs of an
activity.
4.
Surgery recommendations for some deformities.
5.
Referrals to other specialists to decrease the influence of non-polio
related diseases.
6.
Education about what polio is and what it is not.
7.
Teaching a maintenance home-performed active range of motion, a
stretching program, and aerobic conditioning.
8.
Exercise to strengthen muscles that were not involved initially may be
prescribed.
Strengthening polio muscle should
usually not be done as they are likely to be already at maximum strength. Such exercises may enhance fatigue. Any exercise that produces fatigue should be
avoided or performed at a lower intensity.
Any activity that one enjoys except for the fatigue that occurs can
usually be managed by interspersing short rest periods and then resuming.
The polio group from the1950’s is a
proud bunch. They have been highly
productive. They have great pride in the
fact that they “beat” polio”. They
understandably are disappointed to find out that the polio is still with
them. As long as they maintain their
focus on function and come in time to worry less on how they now need to do
some things differently, they will be able to say, “I beat it a second time”.
You may have noticed that I have not
used the term “post-polio syndrome”. I
dislike it because it suggests a whole new disease, which it is not, and also
implies that everybody with it are alike, which they are not. I prefer to say “post-polio, late effects as
modified by the normal aging process and health status”.
Walter C. Stolov, MD
Professor and Chair Emeritus
Stepping down Director of the UWMC
Post Polio Clinic
Department of Rehabilitation
Medicine
FECPPSG’s Editor’s Note:- In Dr. Stolov’s next
to last paragraph, he mentions “the polio group from the 1950’s” as being very
proud of having been productive and beating polio – those of us who contracted
polio in the 1920’s, 1930’s and 1940’s feel that way too. Many of us led the way for the polios in the
1950’s to be able to do what they did. I
thoroughly agree with his last paragraph that we are not all alike. We are
individuals with our own individual needs.
**********************************************
Those that say
that they spend a lot of time on the computer are right – you see, they send us
“treasures” like this. This is from a
non-polio friend, but a senior citizen.
Thanks, George.
|
Here's the way it should be!
They would have access to a library, weight/fitness
room, spiritual counseling, a pool and education... and free admission to
in-house concerts by nationally recognized entertainment artists. |
||
|
**********************************************
Here’s another article from our
member, Linda Terrill – Thanks again, Linda.
PAUL
AND
DR. SALK
This is an edited fictional conversation with Jonas
Salk and Paul Damascus, a character from Dean Koontz’s book, “From the Corner
of His Eye.”
A little background to the story of Paul and Perri:
“during the first year of her illness {at 15 from Polio in 1935}, she had been
slowly weaned off an iron lung. Until
she was seventeen, she required the chest respirator, but gradually gained the
strength to breathe unassisted.
….After the disease whittled Perri’s flesh, leaving
her so frail; that she was bedridden for 30 years… Her case of polio had been so severe that
braces and crutches were never an option.
Muscle rehabilitation had been ineffective.”
“When Paul arrived with a Christmas gift, Perri was in
bed, wearing Chinese-red pajamas, reading Jane Austen. A clever contraption of leather straps,
pulleys, and counterweights assisted her in moving her right arm more fluidly
than would otherwise have been possible.
A lap stand held the book, but she could turn the pages.”
“The following April, when he proposed to her, she
wouldn’t have him. ‘You’re sweet, Paul, but I can’t let you throw your life
away on me. You’re this… this beautiful ship that will sail a long way, to
fascinating places, and I’d only be your anchor.’ “A ship without an anchor can never be at
rest,” he answered. “It’s at the mercy
of the sea.”
She protested that her ruined body had neither any
comforts to offer a man nor the strength to be a bride. “Your mind is as fascinating as ever,” he
said. “Your soul is still as
beautiful. Listen, Per, since we were
thirteen, I was never primarily interested in your body. You flatter yourself shamelessly if you think
it was all that special even before
the polio.”
Frankness and tough talk pleased her, because too many
people dealt with her as though her spirit were as frail as her limbs. Ten months later, he finally wore her
down. She accepted his proposal.
He knew from their first kiss as husband and wife that
this was his destiny. What a great
adventure they’d had together these past twenty-three years.
Perri had just died and Paul is now alone. Caring for her, in every sense of that word,
had made him a far happier man than he would otherwise have been — and a far
better one… Now she didn’t need him anymore.
He gazed at her face, held her cooling hand; his anchor was slipping
away from him, leaving him adrift.
Paul’s wife Perri had died 5 months before. Paul met
Dr. Salk in a restaurant and just had to share Perri’s polio history with
him. He took a picture of Perri from his
wallet. It was an old black-and-white
school photograph, taken in 1933, the year he’d begun to fall in love with her,
when they were both thirteen.
He also showed Dr. Salk a second picture of Perri,
this one taken on Christmas Day, 1964, less than a month before she died. She lay in her bed in the living room, her
body shrunken, but her face so beautiful and alive.
Dr. Salk asks when she was stricken. Paul answered, “She was almost fifteen…1935”.
Dr. Salk said, “A terrible year for the virus”.
Paul spoke to Dr. Salk of “her wit, her heart, her
wisdom, her kindness, her beauty, her goodness, her courage which was the threads
in a narrative tapestry that Paul could have continued weaving for all the rest
of his days. Since her death, he hadn’t
been able to talk about her with anyone he knew, because his friends tended to
focus on him, on his sufferings, when he wanted them only to understand Perri
better, to realize what an exceptional person she had been. He wanted her to be remembered, after he was
gone, wanted her grace and her fortitude to be recalled and respected.”
“Perri… she was the real thing. She didn’t save tens of thousands of children
like you’ve done, didn’t change the world as you’ve changed it, but she faced
every day without complaint, and she lived for others. Not through
them – but for them. People called her
to share their problems, and she listened and cared, and they called her with
their good news because she took such joy in it. They asked for her advice, and though she was
inexperienced, really so short of experience in so many ways, she always knew
what to say.
Dr. Salk said, “There’s no doubt in my mind that Perri
was a hero. But she was married to a
hero, as well”
Paul said, “People look at our marriage, and they
think I gave up so much but I got back a lot more than I gave.”
This is a fictitious love story woven around other
characters in Dean Koontz’s book, From
the Corner of His Eye. My husband and I have read many of his books;
we think this is the best one.
This story made me think of our 42 years of marriage,
and the needs of my polio body, even though not as severe as this lady, Perri,
I have a jewel of a husband too.
Next newsletter, I will share some more of our
stories.
Here’s my e-mail if you’d
like to write me: enjoyinglife.terrill@gmail.com.
~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~
FLORIDA EAST COAST POST-POLIO SUPPORT GROUP
12 Eclipse Trail /
386-676-2435 / e-mail address:
bgold@iag.net
DATE: Sunday, March 20th, 2011
TIME: 1:00 – 4:00 PM
PLACE: Red Lobster Restaurant
Right off I-95 – Exit 261–
(head EAST for about 1/4 mile)
SPEAKER: A Physical Therapist from
Clinic will be our guest
speaker.
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 March 17th, 2011
Any
questions call Barbara at 386-676-2435.
=======================================================================================
R
E S E R V A T I O N F O R M
March 20th, 2011 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 --
03/2011
~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~
DUES FOR 2011- Please take a look at your mailing label - on
it you’ll see the month and year we received your 2010 dues, i.e., 01/2010
means it was received in January 2010, so your 2011 dues is due in January
2011. If your mailing label has the year
first and then the month, i.e., 2010/01 it means that you indicated to us in
January 2010 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.
===================================================
2011 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:-_____________________________________
03/2011