Feature Article: “I Couldn't Ever Do What Everybody Else Did” — Living with the Long-term Effects of Polio

The COVID-19 pandemic has brought a particular concern to the forefront for individuals who suffered the effects of polio in the 1940s and 1950s before a vaccine was widely available. Many of these individuals now suffer a condition called post-polio syndrome, or PPS. Recently, the Parents PACK team had an opportunity to talk with Catherine Reynolds, a polio survivor. Below are excerpts from that conversation, edited for length and clarity.

Can you briefly recount your experience with polio?

I was too young to remember. All I know is what my parents told me. I was about 2 ½ when I contracted polio. I used to follow my father around when he came home from work and he noticed that I wasn't making a step. I couldn't raise my leg up high enough to make a step, and that went on for maybe two days, kind of dragging my right leg behind me. Then next came the fever of 106+. At that point, I was rushed to a hospital. I was up in Alaska because my father was in the Air Force. After they managed to get the fever down after some time, I was transferred to Valley Forge Medical Center where I spent most of my time recovering.

I remember sitting in a highchair, having a weight attached to my leg and having to swing my leg back and forth for a good while because the lower part of the right leg was the most affected. It was part of what they referred to back then as “muscle strengthening exercise.” I regained some use of my right leg, then I was in an old-time leg brace, the big brown shoe with the big hard metal bracing up to my knee.

How did your experience with polio affect you growing up?

I always had limitations. I couldn't ever do what everybody else did. I couldn't wear certain shoes because they just didn't fit right. I couldn't keep up with other kids. I've never been on roller skates since my one foot does not go straight; it just turns outward. Playing jump rope was an issue, but I tried my best because I was stubborn. And I pushed forward and pushed myself, and I was able to ride a bike, but some of it was tough trying to keep up.

In the early years until I was 8 years old, the effect on my lower right leg, the instep, where you have a tendon that allows your foot to make heel-toe movement, did not work. It was destroyed with the illness. So, I dragged my foot. It just dragged. And when I was 8 years old, we were in Langley Air Force Base, and there was a doctor who approached my mother about a new experimental orthopaedic surgery, called the Jones transfer, in which they took a tendon out of my big toe and transplanted it into my right instep, just to give me minimal heel-to-toe movement. And that worked for many years. I was able to walk a little better, not drag the leg, but still it was the clumpy orthopaedic shoes, and as a kid, you don't want people staring.

What might people not realize about post-polio syndrome (PPS)?

The scary point about post-polio syndrome is that by the time it develops, it's 40 to 50 years post the onset of polio. I was working during those years, and at night I would come out of work, and it felt like I was walking kind of on the inside of my ankle and my right knee was kind of bowing inward. And I would have tears in my eyes getting into the car at night because it hurt so bad. I was going to doctors and I would say I had polio a child, and they'd say, “Oh well, maybe try a neurologist, maybe they can find something.” Nobody could help me. Nobody even wanted to hear the word polio; it just didn't matter. They just didn't have any idea. One night, I went to the emergency room and it just so happened that there was this wonderful resident moonlighting that night. I told him I had polio as a child, and he said to me, “I want you to go see Dr. Marianne Keenan at Einstein [Medical Center]. She's doing wonderful things with people that have had polio.” And I did.

I wound up having to have a triple arthrodesis on the right foot, which fused my ankle because my ankle joint was just falling apart, basically. I also had an iliotibial band lengthening on the right side to realign my knee. And then I had a brace the whole length of the leg up to the thigh with a plate that pushed my knee back into place, and I wore that for months. Then from there I went down to a muscle brace below the knee. And two years later, I ended up with a different brace on my left leg, below the knee.

You lived through a time when polio was feared. How did you feel when COVID-19 came along?

To me, COVID-19 long-haulers today are the equivalent of post-polio syndrome because you don't know how long those people are going to have their symptoms. And I can’t understand those who are saying, “no vaccine.” I just don’t get them. They just don't understand how something they're refusing can affect them years down the road.

Some parents have expressed concerns about getting their children vaccinated against COVID-19. They say COVID-19 isn’t severe for most children. That was the case with polio too, but parents could not wait for a vaccine. What do you think is the difference between then and now?

Back then, people believed in their doctors. They had respect for their doctors and nurses and anybody in the medical field that had a little knowledge. They don't today. Nobody has respect for anybody just about. They challenge everything and sometimes it's not so good. The first thing everybody runs to is the internet for information, and instead they find misinformation. They put their own spin on it and it just is totally not right.

What message do you have for those parents who might be hesitant to vaccinate their children against COVID-19?

Maybe read some of these articles that we're putting out there from a person who has had long-haul symptoms. It's not fun. Yes, we survived and yes, we made a life for ourselves, but if I go out and I do a lot of shopping today, I can't move tomorrow. I have to sit in like a dish rag. I just don't have the energy. I do what I can and hopefully I make it through the day without falling.

COVID-19 is nothing to ignore.

Find out more

• Read more about Catherine and her story.
• Watch Cathy’s video, part of the series, “Perspectives on COVID-19 Vaccine for Kids.” The series features personal experiences from polio survivors, families affected by flu, and clinicians caring for kids with COVID-19. Watch other videos in the series today!
• See another polio survivor’s perspective, published in the journal, Vaccine.

Download a PDF version of this article.