Polio, Then and Now
for polio survivors, their families, and anyone who has wondered
why a perfectly nice lady is riding a scooter through the mall

Hello · What PPS Is · What Helps Me · Questions for Your Doctor · Our Group · The Summer of 1952

Hello, and come in

My name is Mildred George. I am fifty-one years old, I live in Baltimore, and I spent twenty-eight years as a school secretary for the city schools, which means there is no excuse you can tell me that I have not already heard and written down on a pink slip.

In the summer of 1952, when I was four years old, I had paralytic polio. I spent that fall on a hospital ward, I came home in a leg brace, and I learned to walk all over again. By high school you would hardly have known, except that I never did learn to run and I always took the stairs one at a time. I married Harold, raised two boys, typed a few hundred thousand attendance reports and did not give polio another thought for forty years.

Then in 1993 it came back to visit. Not the virus. Something else, with a long name. If you are reading this because the same thing is happening to you, or to your mother, or to your husband, then pour yourself a cup of something and sit a while. You have company.

I want to say one thing plainly before we start. I am not a doctor or a nurse. I am a polio survivor who has read everything she could lay her hands on and asked a great many questions. Everything here is general. Take your own questions to your own doctor.

If you'd like to know about that first summer, I wrote it down: The Summer of 1952.

What post-polio syndrome is

Post-polio syndrome, or PPS, is a condition that shows up in some polio survivors many years, usually decades, after they recovered from the original illness. The usual signs are:

• New weakness in muscles, sometimes the ones polio hit the first time and sometimes ones you thought had come through just fine.
• Fatigue. I don't mean tired. I mean a bone-deep, sit-down-in-the-grocery-aisle tiredness that a good night's sleep doesn't fix.
• Pain in the muscles and joints.
• For some people, new trouble with breathing, sleeping or swallowing. If that is you, tell your doctor right away. Don't wait for the next checkup.

Here is what I most want you to know, because it is the first thing everybody asks me: it is not the polio virus coming back. The virus is long gone. You cannot catch PPS and you cannot give it to anyone. From what doctors have explained to me, when polio killed off some of our nerve cells, the ones that survived sprouted new branches and took over the extra work, and that's how so many of us got back on our feet. After thirty or forty years of doing double duty, some of those overworked nerve cells seem to wear out. That's the best explanation I've been given, and it made sense to me. I had been running on borrowed parts for a long time.

Doctors only began to recognize PPS in the 1980s. Before that, a lot of us were told it was our age, or our nerves, or our weight, or that we were just a little blue. Some of us were told that polio was over and done with and we should stop worrying about it. So if you've had a doctor shrug at you, you are not alone, and you are not imagining things.

There is no test that says "PPS" in big letters. The doctor has to rule out other causes first, like thyroid trouble, arthritis, a pinched nerve, anemia or depression, because those can look the same and some of them can be fixed. That takes time and it's tiresome, but please let them do it. You want to be sure.

There is no cure. That's the hard part. But it can be managed, and for most of us it moves slowly, and the main medicine is something you already own: pacing yourself. More on that below.

How it found me

In the spring of 1993 I noticed that the long flight of stairs from the side door up to the main office was getting longer. I'd been climbing those stairs for nine years. By June I was stopping on the landings and pretending to read the bulletin board. By fall I was coming home from work, sitting down in my good chair to take my shoes off, and waking up at nine o'clock at night with my shoes still on. My left leg, my polio leg, started giving out on curbs. My right shoulder ached all the time.

My doctor tested my thyroid and my blood, sent me for X-rays, and asked me whether I was depressed. (I told him I was tired, not sad, and that there is a difference.) Then he sent me to a specialist in rehabilitation medicine who took one look at my history and asked me when I'd had polio. Nobody had asked me that in thirty years. In the spring of 1994 they put a name to it, and I'll be honest with you, I cried in the car, partly from fear and partly from relief. A name is a door. You can walk through a door.

I kept working four more years, with a lot of help from a principal who moved the attendance desk downstairs without my asking. I retired in June of 1998, a few years earlier than I'd planned. I miss the children. I do not miss the stairs.

What helps me

None of this is a prescription. This is my list, worked out with my doctor and my physical therapist over five years. Yours may look different.

A new brace. I had worn a brace as a little girl and I swore on my First Communion that I would never wear one again. Well. The new ones are lighter than the old steel-and-leather contraptions, and mine is made to fit my leg exactly. It stopped my knee from snapping back and it stopped the falls. I wear it under slacks and nobody at church is any the wiser. Pride is a fine thing, but it's a poor thing to break a hip over.

A scooter for the mall. I resisted this one longest of all. Harold finally said, "Millie, you haven't been to the mall in a year, and you love the mall." He was right. Now I ride a little three-wheeled scooter through the department stores like the Queen of England, and I come home with energy left to make supper. I still walk around the house and the yard. The scooter is for the long hauls.

Warm-water exercise. Twice a week I go to the therapy pool at the hospital. The water is kept warm, and in warm water my legs do things they will not do on dry land. The therapist set up a gentle program for me, and the most important word in it is gentle. With PPS, the old idea of "no pain, no gain" is exactly backwards. You work a little, you rest, and you stop before you're worn out, not after. Please don't start any exercise program without asking your doctor first. Overdoing it can make PPS worse.

Rest, scheduled like appointments. I lie down for forty-five minutes every afternoon at two o'clock, and it's written on the calendar in ink, the same as the dentist. When I used to wait until I was tired to rest, I'd lose the whole next day. Now I rest before I'm tired. My daughter-in-law calls it "Mildred's board meeting." I don't take calls during board meetings.

Learning to say no. This was the hardest of all for a church lady. I was the one who did the coffee hour, the bake sale, the funeral lunches and the Christmas pageant costumes. I have had to give most of that away. It turns out the parish did not fall down. I still make my rice pudding for the funeral lunches. I just don't stand up for six hours serving it anymore.

Doing the important things first. Every morning I ask myself what has to get done today and what would be nice. The have-to's go first, while I've got the most in the tank. The nice-to's wait.

Sitting down to do things. A tall stool at the kitchen counter. A shower chair. A long-handled reacher for the bottom shelf. Every one of these saves a little bit of strength, and a little bit adds up.

Not doing it alone. That's what our group is for. See below.

Questions to take to your doctor

I worked as a secretary for twenty-eight years and I do love a list. Print this part out, check off the ones that fit you, and bring it along. Doctors are busy and appointments are short, and it's easy to forget the most important thing until you're back in the parking lot. The list below is plain on purpose so it prints nicely.

To print just this list: highlight it with your mouse, then go to File, Print, and choose "Selection." If your printer won't do that, print the whole page. It's only paper.

Our group

The Larkwood Polio Survivors Group meets on the second Saturday of every month at 10:30 in the morning, in the conference room off the main lobby of Larkwood General Hospital here in Baltimore. My friend Vivian Shurtz and I run it. Vivian is a retired nurse who had polio in 1949, and she is the brains of the outfit. I am the coffee and the name tags.

We have about twenty regulars and a few new faces every season. There is an elevator next to the parking garage door, the chairs have arms, and there is decaf. Spouses and grown children are welcome, and we love it when they come, because they have their own questions. There is no charge. We pass a basket for the coffee if you're able, and if you're not, never mind.

Some months we have a speaker: a physical therapist on safe exercise, an orthotist with a table full of braces to try on, a doctor on breathing and sleep, a lawyer who explained disability benefits. Some months we just talk. Those are often the best ones.

A few of our members said I could tell you a little about them:

If you are in the Baltimore area, write to me and I'll send you directions and put you on the postcard list. If you live somewhere else, there are post-polio groups all over the country now. Ask your doctor, a rehabilitation hospital or your public library to help you find the nearest one. And if there isn't one, start one. That is how ours began: four of us and a coffee urn in 1995.

To the families

If someone you love has PPS, here is what I'd ask of you. Believe them when they say they're tired. Don't tell them they look fine. (We have always looked fine. That was the whole point of forty years of effort.) Offer to carry the laundry basket without making a production of it. And if they finally agree to a scooter or a brace or a handicapped parking tag, tell them you're proud of them, because it took more nerve than you know.

I'm always glad to hear from other survivors and their families.
I answer every letter, though some weeks it takes me a few days.
[email protected]

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since I put this page up in March of 1997. Bless you all.

Last updated Saturday, September 18, 1999
© 1997-1999 Mildred George. This page is one survivor's experience, not medical advice.
Please talk to your own doctor.