My local Pennsylvania polio network has given me great resources for understanding the late effects of polio.
How The PA Polio Survivor’s Network Began Our Mission of Service
My post-polio journey was long, painful and truly confusing. Happily,
in the fall of 2013, I was finally “there”. Polio was no longer defining my life. I am a Summer Grippe kid, often referred to as “non-paralytic”, polio survivor with Post-Polio Syndrome (PPS). Had I discovered the limitations that came with disability? Yes.
Had I discovered new and pain-free abilities? Yes.
I had been given the gift of understanding what was happening and acceptance of my new limitations. I am a polio survivor who is truly thriving. With that, has come a new kind of energy.
For two years I had been writing the fascinating, joyful, painful and truly memorable survivor stories of my friends. Although active in my support group, my new energy was looking for more. I knew without question that in the end, I had been truly blessed in my care. In early spring 2014, I discovered the PHI International Conference to be held in St. Louis. I told my husband I wanted to go. He responded “you can’t travel alone”. Poor guy, I will never forget the look on his face as he dropped me off at Philadelphia airport on my bright red scooter, suitcase under my feet. From that moment, my life changed.
There was kindness everywhere I turned in the form of smiles, patience and people willing to help. Although nervous when I arrived at the conference location, I was excited as well. The first night I met a kind gentleman, also from PA. As I was sitting and he was standing, I could not read the MD next to his name - Bill DeMayo. Little did I know he was a rehabilitative physician, one of the featured professional speakers for the weekend and an incredibly nice man. There at dinner, was Daniel Wilson, PhD (Professor Emeritus Muhlenberg College) who I had met years before, and whose advice was significant in my complex diagnosis.
The next day, when I heard Dr. William DeMayo speak I was fascinated. His integrative treatment program for polio survivors had the same philosophy as the one I had successfully completed at the Post-Polio Institute in Englewood, NJ. I met, listened to, laughed with and learned so much from so many amazing people that weekend; my head was spinning. While on the flight home, I focused on how truly blessed I had been and I knew my life had changed forever. I finally found a place for my newly found energy.
At that time, there were four active support groups in our state. Information for them to share was cumbersome to accumulate and had to be gathered from numerous places. Everyone was struggling with interesting and credible programing to bring survivors to meetings.
Gathering a supportive and working team became a necessity. My husband and two close friends were my sounding board for some great (and not so great) ideas. One, who is filled with wisdom, was interested in the topic because of her love for me and for her 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.
More than 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 Pennsylvania polio survivors who are geographically spread throughout our State. 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 six 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 hospitals 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 donations.
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 care professionals.
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 the world.
Team Survivor (a means by which survivors and our families who are not directly affiliated with their local Rotary Clubs can become part of the solution) has now raised enough funds to vaccinate more than 56,000 children in the most war torn areas of the world.
We happily do presentations about the “Polio Truths” throughout our State. In 2018 and 2019, we did 50+ events. We actively engage in the Senior Health Fairs (sponsored by our Representatives) held throughout PA.
In 2018, we partnered with Dr. Richard Bruno, HD, PhD, Director of the International Center for Polio Education to edit and publish the Encyclopedia of Polio and PPS. This publication contains all of Dr. Bruno’s newly updated articles (including Research articles), Bruno Bytes and videos.
We are grateful for the regular contribution(s) of our professional contributors (listed alphabetically) Dr. Richard L. Bruno, HD, PhD, Dr. William DeMayo, MD, Post-Polio Health International, Rotary International and Professor Daniel J. Wilson, PhD. The full list of our professional contributors (including their biographies) is on our website.
In December of 2014, we made the decision that we would continue to be active as long as it is necessary. It is our dream that post-polio care will become main stream for health care professionals and survivors. We are grateful to be working with generous professionals who are experienced in the care of polio survivors and understand the long-term effects (both mental and physical) of the poliovirus. The opportunity to read and publish their work on a regular basis is something we will never take for granted and want to continue.
The positive response from health care professionals when we talk at presentations about the “Polio Truths” has been truly inspiring. We are grateful for their wanting to attend and encourage their questions and concerns. We talk about ideas such as “non-paralytic” polio being able to result in PPS, the reality of there being survivors seeking care who are not old enough to be eligible for Medicare and Yes, PPS does exist. We talk about how credentialed our professional contributors are – referring to the easy access through our website to their biographies/websites.
April is now Polio Awareness Month (passed unanimously by our PA State Representatives) along with National Infant Immunization and World Immunization week(s). Each year, we launch a new initiative during that month. Over the last five years, these projects have grown to be increasingly more meaningful. We began with Anesthesia Warning cards (mentioned above). These cards have had a positive response from polio survivors and health care professionals all over the US. We now create and distribute images that encourage vaccination.
The concerns about lack of childhood vaccinations are front and center in the news. One of our April projects, easily shared with school nurses and pediatricians, has a direct link to the Rotary International video: “Why Zero Matters”, a film that explains just how easily polio or any virus could return to (or) emerge in any country.
When the World Health Organization announced that Vaccine Hesitancy was one of the Top Ten Global Health Threats, they made our 2019 - 2020 initiative the most meaningful yet. As a result, we went to work partnering with the Rotary Clubs in PA and the PA Immunization Coalition (PAIC) to create a Vaccine Information Card. It is our goal to raise enough funds to print and distribute this card to every new parent in our State. (Printing Donations will come only from Rotary Clubs, Individuals and our Non-Profit Partners). We are happy to have the support of the Vaccine Education Center at CHOP, and have included their direct link information on the card and on our website. This project was featured at press conferences by both PA State Senator Judy Schwank and PA Secretary of Health Dr. Rachael Levine.
For some of us, PPS brings the answer to “I always knew something was wrong” along with dependence on assistive devices for the very first time. For the majority, along with new pain and weakness, PPS brings memories long forgotten – memories of long hospitalizations, isolation, fear and abandonment. For young survivors, we present the reality of PPS with the hope they can begin the lifestyle changes at an early age, that can perhaps reduce symptoms later. We provide information that can help survivors to help themselves and thus be independent once more.
It is the positive response to our work, from polio survivors in the Keystone State, all over the US and abroad, that has been humbling and truly inspiring. The four survivors on our team see the effects of polio as something that we have but not something that will continue to define us. The non- survivors, truly wonderful family and friends on our volunteer team, are focused on our energy not on our disability. That combination has resulted in what we believe to be a positive and encouraging message when discussing the reality of the very painful and difficult, late effects of this disease.
We are survivors of a vaccine preventable disease who have come together to serve others by providing them information, so they too can thrive.
Carol Ferguson and our Pa. Polio Network Team