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May 20th -- Managing Pain - Dr. Malik will be
giving a slide presentation on the newest in pain management
September 16th
--
November 18th
--
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HOME AT LAST!!!
It was so good to get home
and sleep in my own bed again --- now,
sorry the newsletter is so late, but I had a family emergency….. Had to go up to Long Island mid-March and
was up there until second week in May.
When I got back had all that mail to go through – going through almost two
months worth of mail is no easy job….
In addition to regular mail there was over 60 newsletters and other
polio related items. Also, even though
I sent e-mails to everyone who normally e-mails me NOT to send me any messages
as I was going off-line and would let them know when I was back on-line, there
were 756 e-mails waiting for me when I checked my internet upon returning
home. Do you know how long it takes to
go through 756 e-mails???????? I’m glad
to have so many friends, but 756 e-mails…….
Oh, me, oh, my……..
I also drove to Atlanta on
May 10th, for my daughter’s May 11th, graduation from Georgia State
University’s Law School – wouldn’t miss that for the world.
Oh, yes – also had a good
part of my home painted and had three sun tunnels installed……
Soooooo. This will be a
shorter newsletter than usual – I promise to go back to our regular newsletter
for the July/August one.
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CONFERENCE
VIDEO
The video tapes of our
December 2000 conference – Late Effects of Polio – Overview 2000 -- are, unfortunately, delayed. I apologize to all that have already ordered
the video. My being away for so long
put a stop to the editing – and since one of the local high schools was using
this as their Community Service, and the school is closing on May 22nd for the
summer, we are looking for somewhere to fill in so we can complete the editing
and get it out to those of you who have already ordered our December 2000
Conference Video.
If you would like to order
the video, the order form can be found at the back of this newsletter. Again, please remember the video was done as
a Community Service Project by one of our local Daytona Beach high
schools. It is not a professional job
but covers the whole conference.
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POST-POLIO
RESEARCH STUDY
A two-year research project,
funded by the Department of the Army and the Department of Education, is about
to begin at the Moss Rehabilitation Research Institute, in Philadelphia,
PA. This project has inter-related
studies that will be looking at arm and leg function, exercise, and quality of
life. The project was developed as a
result of the findings from previous research conducted at the research
institute that studied muscle overuse.
The
previous research revealed that many persons who have weakness in one or more
muscle groups experience symptoms associated with muscle overuse in some of
their joints and muscles. One of the
goals of this project is to learn more about how arm and leg function and
quality of life are related. The
primary project will study about 250 people with a history of polio and 250
people over the age of 60 who do not have a history of polio. Participation involves one visit to the
research clinic in Philadelphia.
Each
person who participates in the study will be asked to complete a variety of
questionnaires that ask about medical history and quality of life issues. An examination of arm and leg function,
range of motion in some of their joints and muscle strength will be done. Endurance and mobility will also be
assessed.
Based
on the assessment findings, participants may qualify for the treatment portion
of the research project. One of the
goals of the treatment studies is to try to learn if different treatment
programs that involve exercise or stress manage-ment techniques can reduce
specific joint and muscle symptoms.
The
treatment program will run over a period of 16-weeks and will involve
one-on-one evaluations with a trained clinician who will develop an
individualized program based on the overall assessment findings. The clinician will monitor appropriateness
and tolerance of the program by phone and in person. Follow-up of evaluations will also be performed on a routine
basis. Participants who do not qualify
for the treatment studies will be referred to the post-polio clinic if they
would like additional follow-up.
Some
participants in the treatment studies will have the option of having their
chair rise performance evaluated in the Gait and Motion Analysis Lab at Moss
Rehab. This testing will be performed
twice; once before the treatment program is started and once after it has been
completed.
Mary
Klein, Ph.D., is the principal investigator for the project. The co-directors of the Post-Polio
Management Program at Albert Einstein Medical Center, Mary Ann Keenan, MD and
Alberto Esquenazi, MD, are co-investigators.
IF you are interested in learning more about the research project,
please feel free to call the Post-Polio Research Clinic at 215-456-4993. IF you would like to contact the project in
writing, the address is:- Post-Polio
Research, Moss Rehabilitation Research Institute, Korman Building - Suite 216,
1200 West
Tabor Road, Philadelphia, PA 19128.
Editor’s Note:-
I, myself, will be part of
this study when I go up for my annual check-up this October.
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DUES FOR 2001:-
Please take a look at your mailing
label - on it you’ll see the month and year we received your 2000 dues, i.e.,
01/2000 means it was received in January 2000, so your 2001dues was due in
January 2001 If your mailing label has the year first and then the month, i.e.,
2000/01 it means that you indicated to us in January 2000 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 (33) 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 450 newsletters sent out within the United States. We network with approximately 60 other support groups throughout the United States, Canada, Australia and New Zealand – some 40 of these reciprocate by sending us their newsletters. We receive as many dues checks from our out-of-state members as we do from our Florida members. So, please check your mailing label and return the tear sheet if your date is due. We really need your support now more than ever. Just to keep you advised, in addition to the previously mentioned countries, our newsletter goes to Brazil, England, France, Israel, Lebanon, Sweden, Taiwan and Wales.
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WHEN YOU
MOVE:-
PLEASE
be sure to send us your new address – both e-mail and snail mail. 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.
********************************************
Two more of our members have “moved on” - Our sincere condolences go out to the family of CLIFFORD SEAVER of Ormond Beach, FL, and the family of DR. WALTER “Pete” DRAKE, of Tucson, AZ. May both families know only good times from now on.
********************************************
Reprinted from Elder Care,
April 2001
MedicAlert offers national service
The nonprofit MedicAlert Foundation now operates a
national program to store advance directives for medical care. It will transmit instructions regarding care
and treatment to doctors and other health personnel for enrolled individuals
who become too disabled to express their preferences.
Advance
directives usually include a living will that details a person’s choice for
end-of-life treatment and a durable power of attorney for health care that
names a “proxy,” or agent, to make medical decisions if the individual is
unable to do so.
Other
documents to be stored might express one’s wishes concerning resuscitation,
organ and tissue donations and autopsies.
A
person’s proxy and doctors are notified when the directives are filed with
MedicAlert. The enrolled individual
also receives a MedicAlert card (or, for an additional cost, special bracelets
or neck pendants) with instructions to contact the Foundation should he or she
have incapacitating medical problems.
MedicAlert
charges $20 annually to store advance directives securely and will transmit
needed information 24 hours every day.
To
learn more or to get an application, call toll free (888) 755-1448. Or write the MedicAlert Foundation, 2323
Colorado Ave., Turlock, CA 95382.
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This came
to us over the Internet – sorry I forgot who sent it --- but much THANKS…..
~~ SPECIAL ~~
Did anyone ever tell you
Just how special you are
The light that you emit
Might even light a star.
Did anyone ever tell you
How important you make others
feel
Somebody out there is smiling
About love that is so real
Did anyone ever tell you
Many times, when they were
sad
Your E-mail made them smile a
bit
In fact it made them glad
For the time you spend sending things
And sharing whatever you find
There are no words to thank
you
But somebody, thinks you’re
fine
Did anyone ever tell you
Just how much they love you
Well, my dearest “Online”
friend
Today I am telling you.
Editor’s Note:- Although this came to us
through an “E-mail”, it could just as well be someone telling you these same
things with a telephone call, with a special card, or (believe it or not) in
person – face-to-face. Just remember –
each and everyone of us is SPECIAL in our own way.
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That’s the newsletter for now – Thanks for understanding the delay in
getting this to you.
BARBARA
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FLORIDA
EAST COAST POST-POLIO
SUPPORT GROUP
12
ECLIPSE TRAIL /
ORMOND BEACH, FL
32174
386-676-2435
/ fax: 386-671-2838
e-mail: bgold@iag.net / web site: www.iag.net/~bgold/polio.htm
May 2001
TO ALL OUR
FRIENDS:-
Video tapes of
our December 2000 Conference - "The Late Effects of Polio -
Overview 2000" will be
available shortly. There are two (2)
tapes of the complete
conference.
To order a
set of Conference Tapes, please complete the tear
sheet below and
enclose $25.00 ($27.00
outside of the
U.S.A.) for each
set of tapes that you
want - this covers the
cost of the tapes
($22.00) as well
as the shipping and handling
charges (between $3.00 -$5.00). Please note that
our support group
will not be
making any profit
from these tapes.
Please remember that these tapes were done as a
community service project by the Audio/Visual Department of one of our local
high schools. It not a professional
job.
If you have
any questions, don't
hesitate to contact
us.
Barbara Goldstein
================================================================
VIDEO ORDER
FORM
DECEMBER 2000
POST-POLIO CONFERENCE
"THE LATE
EFFECTS OF POLIO
- OVERVIEW 2000"
NAME:- _________________________________________________________
ADDRESS:-_______________________________________________________
TELEPHONE
NO.:- Home Work _____________
E-Mail_________________________________ Fax______________
NUMBER OF SETS
ORDERED:- ___________
AMOUNT OF CHECK:-
$ Please make Check
Payable to:-
FLORIDA EAST
COAST POST-POLIO SUPPORT
GROUP
Mail
Check and Video
Order Form to:-
FLORIDA EAST
COAST POST-POLIO SUPPORT
GROUP
12 ECLIPSE TRAIL
ORMOND BEACH,
FL 32174-4936