Dear Tabby:
Forty years ago I caught a virus that killed half of the nerves in my spinal cord and brain stem. The nerves that survived were damaged by the virus but have been doing double the work to make up for the nerves that were killed. Even though my leg has been paralyzed for forty years, I have always been very hard-driving and am constantly busy: I work two jobs, have ten kids, take care of my 90-year-old mother and mother-in-law who live with me, volunteer at a hospital and a homeless shelter, and raise money to "Save the Whales" in my spare time. Other people who caught this virus are also very busy all the time and are having severe problems with fatigue, new muscle weakness, and pain. However, I feel line right now-except for daily headaches. Should I change my lifestyle to try to prevent new problems?
- "Symptomless in Seattle"
There has never been a longitudinal study that looks at the emergence of post-polio sequelae (PPS) in polio survivors who have no symptoms.
However, each
time someone surveys polio survivors, the percentage of individuals
reporting
PPS goes up. When Mary Codd did the first population-based study at the
Mayo Clinic in 1983, she found that 22.4% of paralytic polio survivors
had PPS. The 1987 National Health Interview Survey estimated that of
America's
1.63 million polio survivors, 66% who had paralytic polio and 24% who
had
non-paralytic polio had PPS. In England, where
they don't even
believe in PPS, 78% of the 1940's-era graduates of one polio hospital
are
reporting "new symptoms." Something must be going on that causes more
and
more polio survivors to report PPS as the years go by. But what?
In 1985, Laura Halstead reported (Halstead and Rossi, 1985) that PPSdeveloped in those who were at least 10 years old when they had had polio and in those who had had a more severe infection, i.e. those who had been hospitalized at polio onset and had had more limbs paralyzed. In 1988, Klingman and colleagues found that it wasn't just the severity of the polio but how much you recovered in the succeeding years that predicted new symptoms. That is, the more damage the polio virus did and the more your central nervous system recovered (the more axonal sprouts you created and the bigger your motor units became), the more you had to lose and the more likely you were to have PPS.
Then, in the 1985 and 1990 National Post-Polio Surveys, Nancy Frick and I (Bruno and Frick, 1987: 1991) found that both physical overexertion and emotional stress are reported by polio survivors to trigger PPS. Further, we reported that polio survivors who were "Type A" (hard-driving, time-conscious, and overachieving) were more likely to develop PPS. It appears that both physical and emotional stress on a polio-damaged and overworked central nervous system led to the development of PPS. This conclusion is supported by the 1991 findings of Paul Peach at Warm Springs. He found that in individuals who already have PPS, the symptoms of fatigue, weakness, and pain just get worse if patients don't follow their therapists' recommendations to decrease physical and emotional stress.
So what do polio survivors like "Symptomless in Seattle" do if they don't currently have symptoms? Well, it doesn't take "Dear Tabby" or even a post-polio specialist to figure out that people with a smaller number of polio-damaged and severely overworked neurons are at risk for developing symptoms that result from chronic physical and emotional stress. Will all polio survivors eventually develop PPS?
Will ALL polio survivors develop ALL post-polio sequelae -from fatigue through swallowing problems? Certainly not. But just as people who've had a heart attack are advised to reduce stress and their fat intake, shouldn't polio survivors without PPS try to protect their damaged and overworked nerves? We advise all polio survivors to follow the Post-Polio Golden Rule:
IF SOMETHING YOU DO CAUSES FATIGUE, WEAKNESS, OR PAIN, YOU SHOULDN'T BE DOING IT.
Why shouldn't polio survivors try to protect their quality of life by decreasing physical and emotional stress through the moderation and pacing of activities, the use of appropriate assistive devices (especially those that were readily discarded so many years ago), and reducing hard-driving, Type A behavior (see Agree and Rodriguez, 1991: Bruno and Frick, 1991: Young, 1991)?
Will these self-care activities prevent the onset of PPS? No one knows. But self-care is the foundation of therapy for PPS and both our patients' reports and the research literature clearly show that the progression of PPS is at least halted and symptoms reduced when patients start to take care of themselves. So it's hard to imagine that self-care won't have some preventative effect with regard to PPS. And if prevention is possible, it would certainly be a lot less difficult and expensive than the physical, occupational and psychological therapy that are necessary to treat post-polio syndrome.
What if self-care merely holds PPS off for a while, or if it reduces the severity of symptoms when they do occur? Or what if self-care has no long-term effect on PPS? Why should polio survivors spend their lives beating up their bodies and their spirits taking care of everyone around them, to the point where they don't even spend a moment of the day thinking about, let alone caring for, themselves? Why should anyone live like that?
As you know, polio survivors say, "Self-care is selfish! I feel too guilty to take care of myself." Self-care, moderation, and reduced stress have been recommended as the foundation for a peaceful and even happy life for nearly 2,500 years, since the time of the Buddha. Taking care of yourself isn't selfish, say the Buddhists. They say that since compassion for everyone is the basic principle that leads to peace and happiness, people cannot be peaceful or happy if they spend their days exhibiting compassion for the whole world with the exception of just one person:themselves.
Dear "Symptomless":
I don't know anything about viruses. But I do think it makes sense for you to start taking better care of yourself. Why is it so hard for us to take care of ourselves? Why should you be doing for everyone else and ignoring and abusing yourself? Don't you at least deserve not to have your head hurt all the time?
Why don't you start by doing one thing for yourself for each thing you do for someone else? Maybe you won't prevent new physical problems. But the worst that could happen is that other people will still be helped and you'll feel better. Why should you "Save the Whales" and not save yourself - Tabby
Source: Newsletter of the New Jersey Polio Network.