Listen to the Voices of Polio

Voices of Polio

Enjoy reading these stories. If you would like to add your own, please do so at the bottom of any page.

27 Comments

  1. Hi, I’m Shirley Pincus and I just joined this group today! Here’s my story…

    I know it’s long and probably boring, but if you do nothing else, please please skip to the bottom and read about how I found a cure for intense pain I endured for over five years. You may find the same surgery could help you, too. (And no, I’m not an infomercial and am not paid to endorse anyone or anything! LOL)

    I grew up in a small town in northwestern Illinois. I contracted polio in 1954 at the age of three. My left side, specifically my left lower leg and foot, were impacted in that I was (am) partially paralyzed from the ankle down. I remember wearing braces that were changed every few years to accommodate my (slower) growth. I was treated by teachers, school kids and others as “damaged goods.” My father played semi-pro baseball and, since I had no brothers, and neither of my two sisters was much into sports, my dad would pitch to me and he taught me how to hit. I got so good, I could hit his ball way into the neighbor’s yard (and we lived on a half-acre).

    Yet, I remember being in the third grade and it was recess. My teacher decided we should play softball. I was not chosen to play in the field, but I asked if I could bat. When it was my turn, I hit a home run, but I remember my teacher saying something like, “it’s alright, honey, we’ll have so and so run the bases for you.” I had just hit a home run, and could have walked the bases three times by the time the outfielders had retrieved the ball, but she wouldn’t let me! That fueled my inner fire to “show everyone” that I could do anything they could do!

    After about 12-13 surgeries during my adolescent, teen and young adult years, I began to become active in outdoor activities, like walking, hiking, snowshoeing, etc. I’d always been in pain but nothing I couldn’t deal with.

    I moved to Chicagoland in the late 70’s, where I met my husband. Today we live about 40 miles outside the city.

    I enjoyed a very lucrative and successful career as the Director of Human Resources for an automotive training company outside of Chicago. I reported to the CEO and managed a staff, and worked long, long hours. My husband and I never had children.

    About five years ago, I began to experience debilitating pain in my left foot. I’d come home from work, exhausted, swollen leg and foot, and got right into bed. My husband would generally fix me something to eat. Then I’d go to sleep. Ultimately, the pain became so intense, I could hardly stand it! I sought more medical intervention, and finally my podiatrist suggested partial amputation of my second and third toes. I sought a second and third opinion and ultimately decided to go with the third doctor. That surgery was performed in late 2012 and I thought it would take care of my pain. Only, it didn’t! Not able to stand the pain any longer, one night I was searching the internet for doctors who specialized in foot disorders, hoping to find someone who could stop the awful pain. By chance, I stumbled upon a practice of a podiatrist/MD and a neurologist who had formed a partnership to treat severe and unusual lower extremity pain. I did more research on both of them, talked to my husband, and I ultimately decided to make an appointment. I remember it was Halloween, 2013, when I first met my angels, Doctor Edgardo Rodriquez and Doctor Roberto Segura.

    Both doctors examined me, performed some tests, and asked me about my pain level (I reported a 9 on a 1-10 scale, and initially told Dr. Rodriguez I gave him full permission to amputate my whole foot, if that would relieve the pain). He later said he knew then that he could help me. The neurologist, Dr. Segura, tested the nerve responses in my left lower leg and found them lacking, of course. Dr. Rodriguez told me about a new technology, cutting-edge surgery where he would locate damaged nerves (using an extremely powerful microscope). He would then remove the damaged nerves and replace them with grafted decellularized human nerve tissue (live nerves from an organ/tissue donor). He did this in three places, each donor nerve about 3cm. The surgery was December 13, 2013. The next morning I woke up with pain…surgical pain…but no more of that awful, debilitating pain I had endured for so many years!!!!!!

    In April of 2014 I retired from my job, not only to continue to heal (healing of this magnitude will take about 18 months) but so I can devote my time my recovery and to spread the word to others like us: you don’t have to live with nerve pain any more! There IS treatment! I am looking for any and every outlet where I can promote the awareness of this new surgery and of organ donation. And that brings me to my third (and maybe fourth and fifth) angel: Those whose nerves I now have embedded in my leg. Thank you, whoever you are. And to my fellow polio survivors, may you find your own angels!

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