Patient Story

Post-Polio Syndrome Apocalypse. Or maybe it isn’t as bad as it seems?

Polio is a scary word in Europe more so than around the United States. We’ve eradicated polio and so there is nothing to worry about, right?

Well, if you had polio back in the 50’s or early 60’s, polio is still a word to reckon with. Only now it’s called post-polio syndrome. I’m a polio survivor and in the past six months I have been introduced to Post-polio Syndrome. Something I was not prepared for.

How it all started

It started with pain in my left leg where I had polio as a child. I was born in 1954 right when the vaccine came out. They stated that due to the fact that I was born in Sicily, that’s where I contracted the viral infection. My formal diagnosis wasn’t ’till I turned the young age of one.

After that it was a series of surgeries and physical therapy, followed by more surgeries and physical therapy. My Dad had great medical insurance back then, so I was getting the best of the best in orthopedics. I remember years later my Mom and Dad telling me about an insurance policy they had bought from a friend who worked for Mutual of Omaha who offered insurance against polio. That policy paid a whopping five grand back then. It helped with the bills according to my Mom.

Realizing polio was back

The pain I remember from those days was unbearable. It may be a little cloudy in my brain since I’m 63, but it all came back to me when six months ago when polio came back into my life. Although now it is called post-polio syndrome and there isn’t much they can do for it.

Post-polio syndrome affects around 400,000 former polio survivors. It is a viral infection that lays dormant for years and then for some unknown reason, comes back to affect the survivor. Sometimes it affects the opposite side of where the original polio had manifested itself. In other cases it affects the original side, both sides of your body, or more.

It can affect your breathing, swallowing, physical exercise, and way of life. It happens in your later years in life. Diabetes, heart disease, nerve damage, muscle atrophy, depression and more have been linked to post-polio syndrome. I can attest to some of the above being part of my experience.

I was lucky, it affected me like a cold that came and went

The pain I am feeling has been located on the original left leg affected by polio. I wore braces on that leg for around five years. Not bad when you consider what many others have been through. I was a lucky one as the Doctor would later say. It affected me like a cold that came and went. Although it left damage to my lower leg.

My left leg is shorter, thinner, and has little strength compared to my right leg. It was always an embarrassment when I was a kid to wear shorts. One leg was thinner than the other and many times I was in a cast or on crutches due to issues with that leg.

I did things many kids couldn’t do though. I remember meeting other polio victims at the time living with the fate of braces and/or walking with a walker, crutches or using wheel chair for the rest of their lives. I even remember meeting a few kids in an iron lung at one time when we were in Europe on one of my Dad’s business trips. I will never forget those images as long as I live.

The apocalypse

The apocalypse I mentioned in the title was how I felt six months ago when this all started again. I think it may have started even sooner, but I didn’t recognize it for what it was. I remember one night I was in bed and in excruciating pain and then it hit me. The memories of being a kid and having this great pain in my left leg and there was nothing that would take it away.

I remembered my Mom would put me in the tub with hot water and massage my leg when the pain came. Aspirin was the pain medication of choice. Nothing stronger. She would spend hours massaging my leg making sure the water stayed warm to help with the pain. Every once in a while if my Dad was around he would take over.

It went on for years like that. After each surgery and round of physical therapy they would ease the pain with warm tub baths and hours of massaging.

These nights I remember all of those times. I remember the baths, the massages and the tears my Mom and Dad had for what I was going through. Not that I was that bad, like some of the other children. It was that they didn’t want to see their son in pain.

I was never treated differently by my parents as I am not treated differently now by my loved ones. I’m still the guys who does things just as I was the kid who did things. I chase my Grandkids around the house as I chased my friends when I was younger. Even crutches or casts on my leg could stop me. Now the only thing that stops me is age. Hey at 63 I am entitled to get out of breath.

I regret nothing. I didn’t pity myself or feel I missed out on anything as a kid. I played hockey as best I could. I played baseball, soccer, and basketball when not on crutches. Although I do remember when I had surgery in my senior year of high school and it was winter time. I had a full leg cast after some surgery on my Achilles tendon to lengthen it and on the metatarsal of my foot. They changed it to a full length walking cast, and I took full advantage of the new lease on life.

I went out in the snow and played football and basketball. I got the cast waterlogged numerous times an each time the Doctor would redo the cast around the foot area. The Doctor dreaded every time I came to the office to rebuild my cast so I could walk. It became a running joke within his office as to when I would show up. Finally the cast came off and I think the Doctor was happier than I was.

I’m just the man to open my big mouth about post-polio syndrome

So am I at the apocalypse of my life? I don’t think so. I am in a revival, so to speak.

With 400,000 post-polio syndrome patients walking around, I see a need for a voice out there to raise awareness of what is going on.

With only 400,000 survivors this isn’t an epidemic. The medical establishment isn’t running any marathons to find a cure or find the right treatment for the pain everyone is feeling.

I understand that we are a minority and with that in mind I have a new campaign to work on. I’m just the guy to raise awareness by opening my big mouth about post-polio syndrome.