DEAR DR. GOTT: I’m having a running feud with members of my family that I need cleared up.
In 1955, at the age of 2, I contracted polio. I was immediately put in isolation in a children’s hospital, where I remained for several weeks in casts and braces. My left leg was drastically crooked and atrophied in a short amount of time.
I have since overcome most of the setbacks, but in 1985, I was diagnosed with post-polio syndrome. It was like a recrippling and decay of all my energy. Since then, I have gotten progressively worse. I have educated myself by reading much material, visiting polio clinics and attending support groups, so I feel quite knowledgeable on the subject.
My mother and sister now claim they too suffered from polio and have PPS. They were never hospitalized, never had any visible signs, and had no lingering fevers from initial exposure. They have gone for almost 50 years not claiming this. Now, as they age, they want sympathy for their “supposed” polio devastation, and I am furious. They’re claiming I’m not compassionate and think I want the “glory” all to myself.
My dad and older sister never claimed the illness, so how could anyone even want to make such an unsubstantiated claim? Is the theory possible, even without visible signs? My goodness, I would never wish this crooked body and pain-filled life on anyone. It doesn’t make sense to me. I know the entire family did have a fever in 1955, but the germ passed through everyone as diarrhea. My mother now has arthritis, and my sister has bad feet. Do they really have a claim?
DEAR READER: The polio virus can be transmitted through contaminated food or water, or through direct contact with a person infected with the virus. So anyone in close proximity to you at the time you contracted it could have also become infected. And large majorities of people are never aware they’ve become infected, because some people develop a nonparalytic form of the disease. They might experience initial symptoms of fatigue, muscle spasms, meningitis, fever, sore throat and more that can last up to 10 days.
As you are aware, PPS can develop decades after the diagnosis has been made. It can be characterized by a weakening of muscles previously affected and in muscles that were not previously affected. Some patients may develop mild symptoms; others may suffer from joint degeneration, scoliosis and more.
A diagnosis of PPS is made only if certain criteria are met. This includes documented evidence of a positive diagnosis of paralytic polio followed by an extended period (typically 15 years or more) of improvement or stability. Symptoms must begin gradually but be progressive and persistent, lasting for at least one year. Other possible causes need to be ruled out before a diagnosis of PPS can be given.
There are several risk factors for developing PPS. These include experiencing severe symptoms following the initial infection; if the initial infection were acquired as an adolescent or adult; achieving drastic recovery (especially following severe symptoms); and performing physical activities to the point of exhaustion or fatigue.
Once diagnosed with post-polio syndrome, people should be monitored for complications. Severe muscle weakness may result in increased falls. Prolonged inactivity and immobility also increase the risk of developing osteoporosis. Combined with the risk of falling, broken bones may become a major concern. People with weakness of the muscles involved in chewing, swallowing and breathing also need to be especially watchful for signs and symptoms of malnutrition, dehydration, pneumonia and acute respiratory failure. People who experienced weakness of these muscles during the initial infection are more likely to experience these symptoms than those who developed weakness of the arms and/or legs.
You appear to be in a no-win situation. Your mother and sister are convinced they suffer from PPS, and unless they are willing to undergo confirmatory testing, you will likely never convince them otherwise. I don’t know their medical histories, but based on your information, it does not seem likely that they had polio. Even if they did, it was likely so mild that it caused few or no symptoms. This drastically decreases their risks of developing PPS. I don’t understand their comments that you are seeking all the “glory” in regards to your polio status. There is nothing glorious about living with deformity and pain. Both arthritis and foot pain have other, more common causes.
I believe your efforts will be better spent continuing with the positive attitude you are exhibiting, staying abreast of new treatments, attending support groups, and visiting clinics where you can help victims of the disease learn to cope.
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