Throughout my years living with polio, I never heard the term “upside-down polio” until my first polio retreat at Easterseals Camp in Empire, Colorado, in 2018. Among the approximately 40 attendees, I was one of the few with polio primarily affecting my upper body—upside-down polio.

My right arm is paralyzed, my left arm is partially paralyzed, and my neck and shoulders are extremely weak. Additionally, I lack quadriceps in my left leg, which makes me prone to falling. 

Due to my significant upper body weakness, I am unable to use a cane, crutches or a walker. I also cannot break a fall with my hands or arms, and getting back up from the floor or ground is a challenge. When I was encouraged to share my story, someone suggested the title “Face First.”

THE SUMMER THAT CHANGED MY LIFE

In 1952, my family moved from Arizona to Michigan in search of better job opportunities. The auto industry was booming in Flint. 

That summer, I fell ill with flu-like symptoms, which continued to worsen. My dad took me to the doctor, who initially prescribed flu medication. The next morning, during breakfast, I discovered I couldn’t lift my right arm to eat my oatmeal. My parents knew something wasn’t right so they took me back to the doctor. After a thorough examination, he sent me to the hospital, suspecting polio.

My world turned upside down at just 3 years old. It was around this time that the polio epidemic in the Flint area began to spiral. The hospital admitted mostly children, but some adults were affected too. There was no cure, no way to stop polio and nowhere to run from it.

While I was in the hospital, my mother was by my side for most of the time, despite being pregnant with my brother. In a twist of fate, my younger brother was born in the same hospital and I was the first of my family to see him. 

INSIDE THE IRON LUNG

My polio began with paralysis in my right arm and the upper part of my left arm, accompanied by weakness in my upper body. After two months, my condition turned into bulbar polio, impacting my ability to breathe, and I was put in an iron lung.

This machine became my lifeline, breathing for me around the clock for six months. The iron lung had port holes on the side, through which nurses provided hygiene care. The neck collar was tight to prevent air leakage while the machine facilitated my breathing by moving the padded tray I lay on back and forth. This constant motion resulted in a bald spot on the back of my head.

Only parents, donning masks and gowns, were allowed to visit their kid in the iron lung section. 

My mom and dad were filled with nervous anticipation every time they visited the hospital, hoping I was still alive. The appearance of a doctor usually signified the death of a child. Each parent hoped it wasn’t their child and grieved with those who had lost their child. Mom recalled that 127 individuals succumbed to polio at Hurley Hospital that year.

After six months in the iron lung, my condition improved enough for me to be moved back with the other children. I spent an additional four months in the hospital, totaling nearly a year of hospitalization.

GROWING UP WITH POLIO

At 4 years old, I was finally able to return home to my family. I started working with a physical therapist who had previously worked with injured World War II veterans. She took a special interest in me and became like a part of our family. 

5-year-old me with a bilateral “airplane” brace to lift both arms.

During my visits to University Hospital in Ann Arbor, the medical team considered amputating my arm. However, my physical therapist was adamant and prevented it from happening. 

The doctors tried different braces on my right hand and wrist to hold my fingers straight.

My first surgery took place on my right hand when I was 6. A bone was grafted from my hip and placed between my thumb and index finger to make my hand more functional. My second surgery was on my left hand to prevent my fingers and hand from curling up. Both surgeries were successful and significantly improved my quality of life.

After undergoing braces and two surgeries, by age 8, I was liberated from the frequent hospital visits and began living a life similar to other kids. Growing up, I didn’t dwell much on having polio. My parents treated me no differently than my brothers and sister. There was very little I believed I couldn’t do, which instilled in me the confidence to try almost anything.

POLIO’S SHADOW

After overcoming polio as a child, I grew up feeling pretty good about myself. I had a wonderful family, a fulfilling career and I remained physically active, engaging in activities like tennis, running 10K races, hiking, skiing, playing soccer, golfing and even climbing Longs Peak.

However, in my 50s, I began to notice changes. One of the first signs was during a skiing trip when I couldn’t push my left leg down into my ski binding. Around the same time, I was playing tennis but started feeling unstable on the court, leading to frequent falls. It was during this period that I, like many other polio survivors, first learned about post-polio syndrome (PPS).

Jim Carr today

PPS is a condition that affects up to half of people who have had polio, often developing many years later. Symptoms of PPS include progressive muscle weakness, pain in muscles and joints, and fatigue. Some with PPS may require assistance with breathing, such as a bilevel positive air pressure (BIPAP) machine—a modern-day iron lung.

The polio virus selectively targets different muscles in the body. In my case, it weakened the diaphragm and rib muscles, making it challenging to breathe when lying down. With PPS, muscles that were already weak continue to deteriorate over time, and the “good” muscles that were overused throughout life also weaken more rapidly than with normal aging. 

SIGNS OF POST-POLIO? HELP IS AVAILABLE

I serve on the advisory committee for the Colorado Post-Polio Organization (CPPO), a part of Easter Seals Colorado. CPPO’s mission is to help those with PPS by offering support groups, aid in acquiring durable medical equipment (DME) and resources for home modifications to improve safety and functionality. 

If you or someone you know has had polio, contact me at 720-220-8413 to learn more about the various programs that can help.