Steele, Maxine - O'Brien County

General Comments:

I had polio at about 16-18 months. I was born in 1922, so in 2007, that would be about 83 years ago. It was called infantile paralysis. Parents often would not tell their children if he or she was too young to remember it. The family was usually quarantined, which was a stigma the family had to bear.

We attended a country school with just three families involved; four children in one family, four in another, and my brother, sister and me. No one over taunted or teased me. Since I was a chubby child and couldn't run well, I was usually the last one chosen for running games, which didn't bother me too much.

My legs and feet hurt so badly at times I would cry. When I told my mother she just said they were “growing pains.” I often wondered why my brother and sister didn't have growing pains, but in those days, we didn't question a parent, even if you disagreed.

Mother would tear 2 1/2 inch strips from an old bed sheet to wrap my ankles and arches; no Ace bandages then! Getting shoes to fit was an ordeal. My feet and arches required wrapping off and on during high school and when I went to business college.

My family doctor was really ahead of the times. By about 1985, he was sure my problems had something to do with polio, but it took several more years to convince others that what was happening to us was related to polio. Support group members all tell of going from doctor to doctor and being told, “There's nothing wrong with you,” and later, “There's nothing physically wrong with you.” It wasn't hard to tell what that meant.

And the braces! Through the years I've had a Taylor body brace, which was made of heavy metal pieces about two inches wide, started at the bottom of the spine, clamped around the body just above the waist and continued to the shoulders. The metal was bound in leather and below the waist, a corset-like canvas band with laces in front to adjust.

Neck braces were first a rigid plastic surgical collar, next one was hinged making it possible to move it slightly, and several kinds of foam neck braces which were more comfortable and yet gave a lot of support.

And then the feet and legs -- have had about 16 procedures and surgeries on the feet, including wire pins in the toes to straighten them and three bunionectomies (no, I'm not a three-toed booby bird); neuroma, tarsal tunnel release, one toe shortened, cysts removed from a muscle. I got my first custom-fitted orthotics in 1959, progressed to foot and ankle brace, a short FAO up to the knee and the KFOA through the years.

From over use of my right arm to help the left side to perform, surgery was done on the right hand, carpal tunnel, cysts removed from a muscle, ligament pinned right hand and shoulder release and repair.

Knowing it's hard to find information on polio and PPS, I wrote several magazines asking if they would do an article on polio information. I heard from one and was told that no one would be interested. I sent a letter and several short articles to the Saturday Evening Post. They called me back asking permission to print my letter in the Post and have people write directly to me because I seemed to have more information than they were able to find.

I agreed, thinking 10 or as many as 20 persons would contact me. To my surprise and delight, I had inquiries from 14 states and Canada, and one from Mexico. All were so glad to know somebody with their similar problems. Some were so grateful for the information that they sent money to help pay for the postage and reprints.

We needed a support group but I did not have the strength or stamina to organize meetings, etc. I contacted doctors, nurses and hospital administrators, one of whom said, “I know just the person for the job” and it was a wonderful choice. She was working in the hospital's wellness center. Our group, NIPS, Northwest Iowa Polio Survivors, meets monthly from April through October, no cold winter months for us! Our core group is about 16, and others come when they can. Our club motto is “A polio support group that believes in self-help with a positive attitude.”

We have an “angel” who makes copies that we give out at our meetings. He's our bank president -- nothing shy about me; I go right to the top. He is a good friend and in years past was one of our Sunday school “kids.”

Much of my information was learned through books and reading columns by Dr. Richard Bruno. He had polio as a child, went on to be a doctor and when active practice became too strenuous, went into research and writing. One thing he tells us is anyone who has had polio has some brain stem damage, whether it was paralytic or non-paralytic.

Humor helps. At every meeting we take time for jokes and humor, sometimes poking fun at ourselves.

Do you have those “senior moments” when intending to say one word another just pops out? Blame it on your brain stem. For example, in a retirement home several ladies became good friends. One of them reported that Ella had to go to the hospital for surgery on a detached retina. One of the group member said she would call Hannah who wasn't there at the time. When she called Hannah, she said, “Ella's in the hospital to have surgery on a detached rectum.” Perfectly good words, but didn't quite give the correct message.

Another example of the brain stem and the hand not working together is when writing, to leave out letters or skip to another word. (Meant to write San Francisco and ended up with “San isco.” “Hitting the wall” describes having intense fatigue while trying to work and knowing you would fall down without sitting or lying down. After 30-40 minutes the balance of the job could be completed.

Of great concern for polio survivors is anesthesia given for surgery. Survivors require only about one-half as much anesthetic to “put you to sleep.” I mentioned it to the nurse who was prepping me for surgery and got the old rolled eyes and sigh, thinking “another one of those thinking they know more than the nurses. Give me a break.”

I insisted on talking to the anesthetist before going into the operating room (which should be the proper procedure, but not always followed). I asked him to please look at an article entitled “The Knife is Not so Rough, If....” He was very interested. I told him I would be happy to send it to the other anesthetists who worked there if I had their names and addresses. A young intern told me later that he had copies made and put in their mailboxes at the hospital.

He did follow the advice about anesthesia and later the surgeon chuckled about him, saying over and over, “Surely that can't be enough. I've hardly given her any.” When I awoke from the anesthetic, I had some chicken soup (what else?). I felt good and clear-headed. What a change from earlier surgeries. Our grandson was with us and he put it well, if not elegantly. “It's the first time I've ever seen Grandma come out of surgery and not be 'loopy' for three or four days.” It was amusing to me that the nurse tried to smother me with attention after she saw for herself that I did know what I was talking about.

I consider this to be a big victory for polio survivors. It's my hope that medical personnel reading this will check to find out if the patient had polio previously. Research needs to be done yet in various areas of PPS, but research and grant money has been hard to obtain. The attitude seems to be that in another 20-30 years, we will all be dead so why spend money on it. But polio has not been eradicated world-wide and with our fast methods of air transportation there could still be outbreaks. In Africa and parts of Europe, much of the population has not been vaccinated.

In a publication where Dr. Bruno's column appears monthly, he states “It's hard enough to 'swallow' having PPS without doctors refusing to believe you're having trouble swallowing.” Polio survivors report difficulty getting pills or they have large pieces of meat lodged high in the throat, behind the breast bone. There is weakness in the throat possible more on one side than the other, so the pill or food doesn't pass on to the stomach.

He says, “The muscles of the throat and esophagus should contract in a coordinated sequence, like snake's muscles move, to inch food downward and into the stomach. Food usually gets stuck right behind the top of the breast bone...and it's painful and scary.” The condition evolves because of damage done to the brain stem when the patient originally had polio.

There is no magic pill to treat PPS. Management includes modifying activities to avoid excessive fatigue, reordering priorities and letting someone else help you, which is difficult to do after trying for years to keep up with others.

Having polio naturally had an effect on my life. It has given me the incentive to study and educate myself and others about polio, learn to have patience, tolerance and compassion, to empathize with others who have disabilities, and to learn much more about myself.

All in all, my life has been good; my education, being a wife and mother, ability to work at a job I liked and meeting new friends with similar problems. These things have helped make an interesting life for me.

To paraphrase a statement made by a woman who has MS: “PPS is an annoyance that I've learned to live with, like bunions. It may not always be pleasant, but its a part of who I am.”