|
President’s Letter
for July / August
"The
Difficulty in life is choice…" a quote of the Irish
novelist George Morre (1852-1933). Our life is all about choices
we have to make each and every day. Our May program, "A
Walk Down Memory Lane (and a small step into the future)",
a mini-seminar, was well-attended as we celebrated the 18th
year since the founding of the North Central Florida Post-Polio
Support Group.
We welcomed new members Mary Jo & Bob Kretz from
Sharpes, Florida, to our group and we look forward to their
attending our special program in August. Our featured speakers
were Lynda Knight (Executive Director, North Central
Florida March of Dimes), James Pott (ADA Consultant),
Steve McMahan (Web Administrator, PostPolioSupport.com), and Jacquelin
Perry, MD, who sent us a special message, "Update on
the Significance of Overuse", we were able to share
on-screen, thanks to Sharon Mixson (Owner of AV
Connection). Dr. Perry was the keynote speaker for our third
conference presented in November of 1992. You can read her
article, "Update on the Significance of Overuse,"
in this issue of the Polio Post News.
Dr. Perry points out her basic rules to avoid fatigue:
"Fatigue is a sign of over-use.
Stop! Don't get tired
Be active, but
Don't push through fatigue,
Braces can protect weak muscles from overuse."
I wish I had known Dr. Perry in the late '70s; perhaps if I had
made better choices then... Being an over-achiever, I made some
bad choices and now I am paying for them. I can hear her now:
"Shame on you, Carolyn!"
Our featured speaker, Lynda Knight, made it very clear: The
March of Dimes has not forgotten us. Please read Sharon
Daszcynski's Summary on page 3 in this issue. Lynda will be
retiring as of August 1st, after 18 years as
Executive Director and 3 years previous as a March of Dimes
volunteer. She has promised us she will continue to be a part of
our support group. Lynda says she is really looking forward to
spending lots of time with her grandchildren.
With Lynda's blessing, I would like to share with you how Lynda
made her choice to turn a personal tragedy into a living legacy.
Jim & Lynda Knight's first child was a beautiful baby girl
born with Spinabifida. Little Laura Knight only lived to be
three years old. While Laura was a patient at Shands Hospital,
Lynda and Jim happened to see one of the March of Dimes'
posters. The March of Dimes helped Jim and Lynda through their
grief. That was when Lynda became a volunteer. When families
need a helping hand, some things are just too big to shoulder
alone. When the unexpected happens the March of Dimes always
offers comfort and support, frequently going above and beyond.
Let's stop and reminisce for a moment: Warm Springs Foundation,
March of Dimes, the discovery of the Salk Vaccine... all started
87 years ago with one man's fight. That man was Franklin
Roosevelt. On August 10, 1921, he was attacked by poliomyelitis
during that summer of one of the greatest polio epidemics. In
seeking help for himself, Roosevelt made the choice to turn his
tragedy into a legacy that is still alive today. The Warm
Springs Foundation was organized into its permanent form on July
27, 1927. It was the first rehabilitation center to treat the
after effects of polio. January 30, 1934, marks the date the FDR
Birthday Ball was organized to raise money for the foundation
that, in 1938, became the March of Dimes, which later funded
research for a polio vaccine. On April 12, 1955, Dr. Jonas Salk
of the University of Michigan announced the successful
development of a polio vaccine. Today, FDR's legacy continues to
help men, women, children and babies worldwide.
What is new with the North Central Florida Post-Polio Support
Group? If you have not checked our website (PostPolioSupport.com)
recently, please do. We now have seventeen active support groups
and one resource group in the State of Florida listed on our
website. Seventeen support group leaders made the choice to turn
their tragedy of PPS around and began helping others. We salute
all of you for giving your time and energy to help others. I
invite each of you to tell your story of how you made the choice
to become a support group leader and mail or email it to
carolyn@postpoliosupport.com.
We have several new projects that are a work-in-progress; they
involve all of us. We are forming that much-needed network of
therapists who are familiar with the late effects of
poliomyelitis. This list can be of help to you, the survivor,
and to physicians qualified in evaluating PPS and treating those
with PPS. If you have a therapist not on our list, please email
me the therapist's name, address, phone number and email address
to carolyn@postpoliosupport.com. We'll contact them for
permission to add them to our list.
We now have an ADA Consultant asking our help in improving
conditions in our area. Mr. James Pott is covering a 100-mile
radius centering on Marion County, and he had been seeking a
local lawyer to help. Thanks to one of our members, Howard
Wager, we have located a lawyer in Gainesville.
Our upcoming program will be on Saturday, August 23, at 10:00AM.
We do ask that you RSVP by August 20 if you wish to attend.
Refreshments will be served.
This is a special program that Jerry and I present each January
and August: "What is Post-Polio Syndrome?" We
present a very informative 29-minute video that explains PPS and
what to expect. We discuss what we have seen in an open
discussion after the video. You will also learn what to expect
during a post-polio evaluation. Because warning signs can mimic
other medical problems, we encourage polio survivors to be
evaluated by a specialist who understands and treats polio
survivors to confirm a PPS diagnosis.
We are fortunate to have Amy E. Clunn, MD, who does evaluations
here in Ocala. Survivors come from all areas of Florida for
their evaluations. Each survivor is different, so what may work
for Patient A may not work for Patient B. A complete evaluation
is important and will give you peace of mind in knowing
"what's wrong with me?" An evaluation also tells you
what PPS is doing to you and how to deal with it and get on with
your life. The peace of mind alone is worth its weight!
We encourage team involvement. Survivors should be responsible
for setting and meeting goals and family members are responsible
for learning, helping and encouraging. So remember the date:
Saturday, August 23rd at 10:00AM. Be sure and RSVP by
August 20th. Everyone who wants to attend is most
welcome... just let us know.
Your president,
Remember
that every day choices confront us. Our response to each choice
we make will produce habits and ultimately form our character.
|
