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brother who is also a survivor. The third in our initial journey was
a man I met in the local support group. Paralyzed from the neck
down at age 2, his journey with polio was one that I could not
imagine. His sense of humor and ability to be very "grounding" all
at the same time were the perfect combination. Over the next few
months, I learned how to launch a website, use Facebook and call
complete strangers for advice.
November 2014 we were ready to go. We were devoted to our
mission statement: "To Be in Service Providing Information to all
Polio Survivors, Post-Polio Support Groups, Survivor's Families
and their Caregivers." Our website put information from multiple
credible sources in one place. Prior to launching it, we asked every
contributor for their permission to publish their work, along with
their biographies, as it was/is critical for us to provide only the
most credible information. At the same time, we were truly naive
as to the power of the internet.
Almost five years later, our mission of service is more intact
than ever. Our team has grown to be what we call a "joyful rag
tag bunch" of nine volunteers. Four of us are survivors who are
geographically spread throughout PA. Each of us has a completely
different "polio" story. One, paralyzed from the waist down, spent
two years in the hospital. One realized the complete paralysis of
her right arm, spent 6 months in the hospital, and still has that
complete paralysis. One, completely paralyzed from the neck
down, was cared for at home by his (quarantined) mother because
the hospital(s) were filled. I had a case of the summer "flu," was
better in a week and was left only with a minor "drop" foot. The
weakness, pain and fatigue of PPS has affected us all differently.
We understand that Post-Polio Syndrome is always a diagnosis
of exclusion. We accept the words of both Dr. Bruno and Dr.
DeMayo when they say "Polio survivors - you are all the same and
you are all different." We realize that diagnosis and treatment can
be complex because we are all so very different.
We serve ALL polio survivors regardless of where they are from
and charge no dues. We are funded solely on and grateful for all
* Our newsletter is published each month for no charge (by
email). We publish in both regular and large print formats, all
over the US and abroad.
* Our website is updated regularly. The biographies of our
regular contributors are clearly visible with a simple "click" on
their name (when highlighted in red).
* With the help and support of our amazing professional
contributors, we launched an updated Anesthesia Warning /
PPS Symptom Card. The information is easily accessed
through a "scan code" on the card.
* At the request of survivors, we have published a PPS
Symptom Checklist to share with our families and health
* We have hosted/sponsored two conferences and a worldwide
webcast. We have published the videos on our website, thus
allowing the information to be shared with all polio survivors.
* We have introduced ourselves (by mail) to every hospital,
senior residence community, neurologist, home health care
agency and oral surgeon in the State of Pa.
* We have become active in the PA. Immunization Coalition
(PAIC). Two of us have attended as exhibitors and speakers at
the Pa. State Immunization Conference.
* We have actively engaged with Rotary International, whose
mission (in partnership with the GPEI) is to eradicate polio.
We personally visited their headquarters in Evanston, Illinois
and presented a gift of gratitude from Polio survivors all over
* "Team Survivor" (quite simply a means by which survivors
and our families can become part of the solution) has raised
enough funds to vaccinate more than 32,000 children in the
most war torn areas of the world.
* We happily do presentations about the "Polio Truths"
throughout the State of Pa. In 2018, we did 30+ events.
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SUMMER 2019 | CHESTER COUNT Y Medicine 19
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