Polio Survivors Serving Each Other - PA and Beyond
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Our stories, about the TRUTHS to this terrible disease.  
We welcome the stories from Polio Survivors all over the US and Abroad.
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Arlene
     Arlene was eight when she was taken alone into a dark room where a spinal tap was given to the young, frightened child. It was polio. The little girl couldn't even sit up. For fear of exposure to the virus, the ambulance would not take Arlene and another little girl to the hospital. Because the other little girl’s parents owned a funeral home, they were taken to the hospital in a hearse.
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Charlotte
     Charlotte, ill at age nine, was diagnosed with Rheumatic fever.  Two days later her legs were completely paralyzed.  ​It was polio. 
     Months later,  she got hungry, and her Mom wasn't there.  She prayed:  
“Please God, just let me get to the kitchen cabinet for crackers”.  She picked herself up from the sofa and holding on to all the furniture on the way, she walked out to those crackers.  That’s as far as she got.  Her legs folded and down she went.  So the little girl prayed again.  “Lord, please get me back to the sofa so I can eat my crackers.”  It worked.  She pushed herself up to the cabinet using the kitchen chair and got back to the sofa the same way.  That night, she surprised her mother while she was cooking dinner by walking to the table herself. ​
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Dan
    Dan was five when he became ill with polio.  “I remember my father carrying me into the hospital and then my parents leaving me standing alone in my bed crying. Because of isolation they were not allowed to visit and could only look at me through the window of the door.”
     He was left with a very weak right leg and torso muscles. He needed to learn to walk again.  Due to the weakness in his torso, Dan developed scoliosis. They tried braces and exercises, none of which worked.  Six years later, his parents agreed to a spinal fusion for their son.  After 6 weeks in the hospital, the doctor took bone from his left leg and fused the thoracic spine.  He went home in the body cast to allow the bones to fuse – and stayed in it for almost a year.  “I missed fifth grade lying on a hospital bed in our living room.”  
     As he aged, Dan’s post-polio problems became pronounced.  For more than 20 years, he required a bi-pap and eventually a ventilator with  supplemental oxygen for sleep.
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Deb
       Deb was completely paralyzed on her right side at age five. The local clinic was full. After a spinal tap, her parents were told to take her to a hospital 100 miles away. They left their frightened, paralyzed little girl with strangers and were told they could only see her on weekends. For the first four weeks (while she was quarantined) they drove 200 miles round trip so they could wave to her through a window from the parking lot. Once she was out of quarantine, they made the same weekly drive for five more months, to visit their permanently paralyzed little girl.
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Diane
     Shortly before her ninth birthday,  Diane had trouble getting her shoes on. "That night, the pain engulfed my whole body and my mother was in a state of panic.  It was World War II.  My father was gone.  My mother was alone with four children.  My Grandfather took me to the hospital. One word from that day is very clear.  POLIO."  The neighbors withdrew because of “fear”.  Her father was restricted to his base because of “fear”.   
     She was taken by ambulance, far from her home, to a hospital for crippled children.  While in isolation, the little girl discovered that "the pit of fear has no bottom".  "I was never so alone in my life.  I wanted desperately to be hugged, but the nurses seemed afraid to touch us".  They did what was necessary.
      For 6 months in rehabilitation "I was no longer alone and knew God was with me".  She went home, unprepared for how the “outside” world would accept her.  "My disabled body was always in full view."  Her mother walked her to school in a stroller arriving before the other children.
      "I married and had a good life.  I will always have two legs that do not match.  Now, I am living with Post-Polio Syndrome.  My weak leg is weaker and there is more pain, but I am not alone."  Diane will not be defined by this horrific disease called polio. 
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Janis
        “We were healthy, rambunctious kids, our parents abided by every single public health
recommendation to try and protect us and yet, when a virus wants to hit, it’s going to hit
everywhere it wants to.”  Polio hit my family really hard.  My twin brother, Frankie died. Two of my
friends died.  I was paralyzed and am grateful to have recovered.  Many of us have really bad memories of how awful it was to have scabs in our head and all over our bodies from chickenpox.  
     “I am a real vaccine advocate, as most people in my generation are.  Those bad memories are the reason we are very, very thankful we have so many vaccines today.”
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Jean
     Jean was two.  One hot summer day, her mother took her  swimming.    
     A few days later, all of the 19 children who swam at the pool 
that day began to get sick - very sick.   Jean had significant weakness on the entire right side of her body.  All 19 had contracted the dreaded  disease - Polio.  17 of those children died.  Only Jean and another boy survived. 
     Disabled her entire life,  Jean was determined not to be a victim and stay resilient.  In her early 50's, she visited a rehabilitative physician, who told her it was likely that her symptoms of post-polio syndrome were going to increase in intensity.  
     Unfortunately his prediction was correct and some of her falls resulted in significant injuries.  
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Jim
          Jim was completely paralyzed from the neck down at age two. The hospital was "overwhelmed" with polio patients. His parents were told to take him home, live in quarantine and do the best they could. His little brother (an infant) was quarantined on the next floor. The entire neighborhood knew that polio was in that house and once he recovered, no one would befriend the "cripple".
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John
     One day he was an active 12-year-old riding his bike, playing baseball and climbing trees.  The next,  he remembers feeling bad, missing school, developing a limp and was in an ambulance on his way to the hospital.   
​     John went to t
he Industrial Home for Crippled Children in Pittsburgh for rehabilitation.  He was in a ward with five other boys, one with TB, two who with cerebral palsy and a couple of other polio patients. The first step in the recovery process came from a physical therapist who put John through a 
very painful process, 7 days a week, of working to and past the point of pain  for every muscle affected.  Once a week they went to the pool.  There he wat put onto a  submerged board where the meanest PT in the eyes of a 12 year old, would work him over.   
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John
​   ​     John was only two when he was confined to an iron lung for 15 months. He went home with a partially paralyzed left arm. When he was five, he was hit by a car - his left arm was broken. The doctor saw no need to set it as “he’s already crippled anyway”.  ​His arm was now permanently paralyzed.  At age 14, he got polio again. He spent nine months in an iron lung. 
     Twice he fell, twice he got up again.
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Kat
    Kat caught polio at 14 months old.  She was on an iron lung and wore leg braces until she was 5.  She always had some breathing issues and skinned more knees than any other child from tripping over nothing!  She became a special education teacher and taught on 3 continents for 30 years before retiring. She has a wonderful daughter and a fantastic husband. At 50 the falling and breathing issues became more frequent and Kat found how misunderstood polio and the late effects of this virus really are.   At 60, her breathing issues became so significant she got a power chair, a service dog and had to go on a ventilator (certainly an upgrade from an iron lung).  A virus that she recovered from as a toddler has forever changed her life.  Life on a ventilator. . . . THIS is what a virus is capable of. ​
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Marty
     No one in her family knows where Marty might have contracted the poliovirus.  She was in a large polio ward in Oklahoma City for 6 weeks.  Initially, both of her arms and legs were paralyzed.  When she went home, she was lucky to be able to walk and learned how to play with my toys using her feet.  She has some of the strength in her left arm, but her right arm has remained completely paralyzed. 
     'When I was in first grade, my papers kept slipping around on the desk because my right arm could not hold it down.  My dad brought home one of the little desks from my classroom, and built a device that had a clipboard clip on the top of the desk that was operated by a pedal on the floor that I could push with my feet.  I also learned to write with my feet and discovered I could do far more with my legs than walking!' 
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May
​     Born in Taiwan, May contracted polio when she was barely 1. She remembers going to a clinic for heat therapy and getting hot water poured on her legs.  She has never been able to “squat” due to muscle weakness.   After coming to the US, she met and married Winn,  a fellow survivor. 
      She led an active adult life.  PPS entered the picture when she started falling in her early 40’s.  She was careful, but only able to stay stable for awhile.  Now, her muscle weakness is more significant.  She knows that by using a cane, a rollator and limiting her activities, her pain and weakness are currently
manageable.  Neither May nor Winn are able to climb any steps.  
      As May and her husband BOTH struggle with Post-Polio Syndrome differently, she can see clearly how different the late effects of polio can be for others.
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Nancy
          Nancy was six when she came down with a high fever and a stiff neck. The next thing she knew, she was alone in an ambulance bound for a hospital at the other end of the county. She barely remembers weeks in isolation, where nurses and doctors wearing face masks came and went.  There were so many hours with steaming hot packs on her legs that she’ll never forget the smell of wet wool.
     Sixty years later, she can clearly remember the awful pain of the spinal tap that confirmed the polio diagnosis.  “No wonder we polio survivors are so brave and fearless."
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Robert
    Robert was born in in the hills of Appalachian coal country. “When I was seven months old, my Mother and Daddy noticed my runny nose and how much I was falling when I was trying to hold onto furniture and pull myself up.  By the time the tests were completed, I couldn’t stand at all."  The baby boy was whisked away to a polio clinic in Marmet, West Virginia. “Bobbie” as he became known, resided at the rehabilitative clinic for five years. 
     Many years later, after dealing with episodes of falling, chronic pain in his lower back and struggling being cold constantly, he was diagnosed as having the late effects of polio – called PPS.  A Pastor, Robert has never lost his faith and has continued minster to others as he deals with chronic pain..

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Roger
    Roger  was 12 when he became ill.  Because they were overflowing, he was not taken to the hospital.
​     After a three-week battle with the virus, much of his right side was paralyzed and he was finally taken to the hospital.  Because there were no open beds, his parents were told to leave their son in the "garage" next door.   They had no choice, and did what they were asked. 
     He was there, with the other "quarantined kids" for a month.
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Sally
     Sally had only a "mild", viral like illness, recovering easily after a few days. No one knew that she could be inadvertently spreading the poliovirus.  No one will ever know if she did.  As a "long hauler", the virus caused untold damage and she requires the use of a wheelchair on a daily basis.
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Shirley
    Shirley lived on a farm.  One day, the 12 year old felt too tired to feed the chickens. The next day, she was unable to walk.  It was polio. 
    After 3 weeks in the hospital, she was moved 100 miles from her home, to the Home of the Merciful Savior (HMS) in Philadelphia (a residential facility for polio patients).  She lived at HMS until she was 17.  Shirley never felt abandoned and found a new “family” in her friends.
    After graduating from Temple University, she was told that no one would hire a teacher with a disability. That didn’t stop her.  Shirley went on to teach middle school at HMS for 35 years.
     Shirley fell in love with fellow HMS student, Fred – also a polio survivor.  Both of them required braces and crutches as they worked full time and raised their two daughters.  Shirley displays a “can do” attitude and is a problem solver, viewing barriers only as “challenges to be overcome”. 
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Vera
           Vera was 22 and had been traveling through Europe with her college roommate.  After her energetic first day in Rome, she got out of bed and fell to the floor, unable to get up. Something was very wrong.  She asked the American Embassy for an American doctor. A physician arrived and diagnosed spinal meningitis.  Twenty-four hours later, she was paralyzed from the waist down.  This time they sent Italian neurologist.  He spoke no English and she spoke no Italian.  It was polio.  He took her to his Clinic (which turned out to be a mental institution).
       Placed in isolation, she was confined to bed for a month in a foreign country.  The doctor said they had no experience in Italy with polio in adults because they believed only children got polio. 
Survivor Story Video Corner
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Bill
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Brad
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Carol
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Carol F. for CHOP
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Cathy for CHOP
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Deb
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Deb S. for CHOP
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Janice
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Janis N. for CHOP
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Jim
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Joe
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Peter
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Joe R. for CHOP
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John
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Kathy S. for CHOP
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Martha

Let’s preserve the truth. 
​
These short stories help others understand the realities of what is NOW a Vaccine Preventable Disease.
Make a Video:  If your computer has access to the internet and a camera, that’s all you need. 
  • Many desktops, smartphones and Ipads have this ability and we don’t even know it. 
  • Both John and Joe self recorded these short videos on their phones.
  • Bill did his on an Ipad.
  • Carol did hers on a five year old laptop.
         Are you part of a support group that’s using Zoom ?  
  • Deb and Jim recorded theirs with us recording through a “zoom” call.
  • Perhaps your group can record the stories, save them to an mp4 and share them with us.   
Write a Short Story. These are brief and powerful
​It's time to tell YOUR story.  These short stories are easy.  
Email to: info@papolionetwork.org
​Polio is gone in many parts of the world, but has yet to be completely eradicated.
ALL children that can be, MUST be vaccinated.

​​By joining together, we have become a part of the solution.
SURVIVOR STORIES FROM THE KEYSTONE STATE
SURVIVOR STORIES

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 Est. 2014

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  • Home
    • About Us.
    • Our Network Team
  • What's New
    • PPSN Newsletter >
      • PPSN Newsletters - 2016-2022
  • Post-Polio Syndrome
    • What IS Post-Polio Syndrome?
    • ** Anesthesia Warning **
    • DeMayo 's Q & A Clinic - William DeMayo, MD addresses PPS Issues >
      • Articles By Rehabilitative Physician Dr. William DeMayo, MD
      • Dr. DeMayo's Post-Polio Video Library
    • Encyclopedia of Polio and PPS by Richard L. Bruno, HD, PhD >
      • "Bruno Bytes"
      • Complete Inventory of Articles by Richard L. Bruno, HD, PhD
      • Books by Richard L. Bruno, HD, PhD
      • Video Library - Richard L. Bruno, HD, PhD >
        • "Casual Coffee Moments" October, 2015
    • Information for PPS Caregivers and Providers
    • Living with Post-Polio Syndrome. >
      • Living with PPS (Articles and Video Library from our Professional Contributors)
    • Primary Care Perspective >
      • Articles by Marny Eulberg, MD
      • Videos by Dr. Marny Eulberg, MD
    • PPS Health Care Providers - A Guide
    • What's New from Post-Polio Health International
  • Polio Eradication
    • Team Survivor >
      • Team Survivor Donations
    • Polio Eradication Video Library
  • Polio History
    • Polio Historian - Daniel J. Wilson, PhD >
      • Video Library - Daniel J. Wilson, PhD
    • Polio History Video Library
  • Polio Vaccine
    • Polio Vaccines' Unsung Heroes
    • Polio Vaccine Video Library
  • Vaccination Information
    • Vaccine Advocacy >
      • World Immunization Week - 2022
    • Vaccine Information Card >
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