Her “Funny” Foot was no Laughing Matter.
My post-polio journey was long, painful and truly confusing. There was diagnosis, frightening mis-diagnosis and an enormous amount of self-doubt. Finally the mystery was solved. I am an “inapparent” (often referred to as ‘non-paralytic’) polio survivor living with the pain and disability that comes with PPS.
All I had was a memory - the memory of being 12 and taken to Temple University Hospital in Philadelphia. As I grew, I had developed a “drop” foot that was becoming more significant. I still remember that kind physician taking one look at my foot and telling my parents “THAT is a polio foot”. He went through my history with my mother, and when he heard the words “she did have the Summer Grippe when she was two” he smiled and responded, “We now know that the summer grippe was often a ‘mild’ case of polio”.
July, 1954. A few weeks after having “the summer grippe”
The word polio was never spoken again. My mother still referred to my left foot as my “funny” foot, but she didn’t scold me quite so much for the way I walked after that. Although it was always there, what followed (quite noticeably beginning in my twenties) was a lifetime of what we now know to be Post-Polio Syndrome (PPS).
Muscle twitching, shortness of breath, spasms and weakness in my left leg had become a normal occurrence. I remember my left foot cramping up in my ice skate when I wanted to play hockey with my young sons. The fall resulted in a broken elbow. A few months later I needed minor outpatient surgery.
Having been given a pre-op sedative while waiting to go into the OR, my left leg started flipping on the gurney (like a fish on a dock). The next thing I knew, I woke up the next day, very sick in the ICU. When the anesthesiologist interviewed me, it was long and arduous. He was convinced I had left something out of my history. Finally, I told him about being told that I “may” have had a mild case of polio as a child. He was adamant as he told me THAT was the explanation and that I must never leave that out of my medical history again. My medical history? It was only a story from my childhood.
My forties brought significant and rather frightening weakness and muscle spasm issues to my left leg and upper left side into my shoulder and neck. After an accident in 2000, my upper left back and neck pain became all consuming. Something was wrong, but what? No one seemed to have an answer. All I had was a memory and a gentle scolding from an amazing physician. The back and spine specialist I saw sent me for an EMG and nerve conduction study in my neck where I was experiencing such severe symptoms. It was one of the most horrifying experiences of my life. The EMG physician was clearly annoyed. The room was horribly cold and the pain unbearable. When I asked him to stop the test, he was quite loud as he declared there’s “no sign of polio”. I have never before or since asked a physician to stop a procedure.
After reading the EMG results at my follow-up visit, my doctor asked me to stand, leave my left heal on the floor and lift the front of my left foot. That’s when I discovered I couldn’t do it. My right foot did it easily. WHAT did this have to do with my back pain? He gently told me he had interned with the leading post-polio physician in Philadelphia and it was time to see her and that they would be “bracing me up”. No one was going to slap a brace on me, I thought. Besides, the EMG showed “no polio”.
Months later, my left knee went into a direction that it didn’t belong. When I asked the doctor to “strap it back where it should be”, he replied with confidence “no” and made other plans for me. The next morning my husband and I were in Philadelphia with that physician who ran the Polio Clinic. After measuring my leg and watching me walk, she explained that I had PPS, gave me a booklet of information and an appointment with an orthotist for a brace. Over the next year there was lots of treatment but no reduction in pain and lots of confusion. The brace had reduced my stumbling, but my shortness of breath, upper back pain and weakness were worsening. Despite the care, the physician could only address my leg weakness.
My journey took me (and my ever-supportive husband) to neurologists and endless questions and medical tests suspecting MS and brain tumors. One physician looked me straight in the eye and told me “It’s not possible for ‘inapparent’ or ‘non-paralytic’ polio to cause this much damage”. Everyone agreed that something was wrong. All I had was a memory, a PPS “diagnosis” and a test that showed I had not had polio. But the doubts were always there.
I searched the internet and found the Post-Polio Institute in Englewood, NJ. They were an integrative clinic that was serving polio survivors all over the US. When we got there, everything was different. The Director, Richard L. Bruno, PhD was thoughtful and kind as he asked me questions that I had never been asked before. His associate, Rehabilitation Physician Jerald Zimmerman gave me the most thorough evaluation I had ever experienced.
Once again, everyone agreed that something was wrong – but what? Although there were symptoms of post-polio, there was no proof that I had ever had the virus. On the way home from my first visit, my husband said to me “Finally, after all these years, I know you’re going to be OK.” As I look back, his confidence served me well.
Another EMG. This time, it was done in my left leg, while I was standing. It wasn’t nearly as painful as the first, but it was no picnic either. His response? “No Polio”. He did tell me that the “results were bizarre” and clearly noted that on the report. Bizarre? Back at Englewood, Dr. Bruno and his associate read the report and were not happy. It appeared to be one more test that had been done incorrectly and I needed another. I was tired, angry and one unhappy gal.
Shortly thereafter, I went to a PPS support group meeting where a well-known polio historian was speaking that day. Prof. Daniel J. Wilson, PhD was fascinating to hear. One of the points he made was that the EMG of a polio survivor was one of the most difficult to read, because it required specific training that very few neurologists have had. When I showed him the reports, Dr. Wilson told me that he agreed with Dr. Bruno about the previous tests and fortunately, he knew one of those specially trained physicians at the University of Pennsylvania.
During my visit with that specialist, the test was performed while making sure I was warm and lying down. This was completely different from my previous experiences. It still hurt, but I wasn’t fearful during the process. While they kept the needles in my leg, the doctor opened the door and called in other young physicians to see what was “concrete evidence of an old polio”. After years of searching, we finally had the answer, and the experienced, qualified physician used it as a teaching moment!
With the “proof” of the damage from an old polio came the correct diagnosis and my journey to wellness could finally begin. I followed the program at the Post-Polio Institute. This program provided outstanding physical and occupational therapy, taught correct posture, reduced walking, effective bracing, post-polio nutrition and energy conservation. For six years I opened myself up to learning about not just the physical but the mental and emotional damage that comes from the polio virus. My family finally understood what was happening. Both my primary care physician and my physical therapist of many years had the benefit of being taught by their team of professionals. I was fortunate to have a PPS experienced rehabilitative physician close to my home who could continue my care.
My father never spoke the word polio – even as he saw me newly braced and now walking with a cane. My mother would live to see me progress to a mobility scooter and I could always see the pain in her eyes. One day, at age 90, she told me that deep down, she and Dad always knew I’d had polio but because I got better on my own in just a few days with no visible effects, they said nothing. They always blamed themselves.
This led me to start the PA Polio Survivors Network in 2014. We thought our work would be complete in just a few years – but our journey continues! With enormous gratitude, our list of professional contributors, survivors and friends has grown significantly. We are thankful for the support of the outstanding professionals who give so much of their time to help survivors.
Now in our 10th year, PPSN has become “Polio Survivors Serving Others” (www.polionetwork.org) and is serving polio survivors all over the world. We support the extraordinary work of the Rotary Foundation for their determined efforts to eradicate this terrible disease. We draw attention to the importance of being immunized against polio and all crippling childhood diseases.
Twenty years post diagnosis, I remain fairly stable and am grateful for the outstanding (and often difficult) care I had for those six years at the Post-Polio Institute. I’ve learned to avoid steps, rest, use a power chair for any distance walking and say the word “no”. My Anesthesia Warning Card is readily available. I have a wonderful rehabilitative physician and see a physical therapist regularly, who has taught me the need for gentle stretching, uses myofascial release that reduces pain and kinesiology tape to help keep my shoulders where they belong. I know that with activities of daily living, my muscle weakness and pain can (and probably will) increase - that’s the reality of PPS.
I am living proof that a “mild” or “inapparent” case of a virus can cause lifelong damage. Polio isn’t a “one and done” virus that attacks and leaves. The very idea that even one more child suffers from this terrible disease is now personal.
Without question, my family understands that the pain and disability from polio CAN last a lifetime.
Thank you: Serese Marotta at Vaccinate Your Family and Paul Offit, MD at the Children’s Hospital of Philadelphia for encouraging me to write this story.
