Note: This column is for information purposes only and is not intended as a substitute for professional medical advice.
Q: I am angry and desperate again this year. My company has changed HMOs. Again I am trying to find a doctor who treats PPS. And again the doctors I find don't know how to treat PPS, know nothing about PPS or say they don't believe in it. When is someone going to educate doctors that PPS is real?
A: We have been trying to educate doctors for 20 years. There have been articles in all the major medical journals--including the Journal of the American Medical Association and the New England Journal of Medicine--which leave no doubt that PPS symptoms are real. There is no excuse for doctors not to know about PPS. There is certainly no excuse for them to say they "don't believe" in PPS, as if it were a matter of religious faith.
So send the Post-Polio Letter to your HMO's doctors. You may be able to educate them and help them to help you.
Q: I know Sept. 11 was stressful for everyone. But it seems it has hit me and my polio survivor friends worse than others. We feel more fatigued, have more pain and our muscles seem weaker. Could stress actually be worse for polio survivors?
Oh yes. Emotional stress affects polio survivors more than other people and may actually damage neurons. In our 1985 Post-Polio Survey, emotional stress was found to be the second most frequent trigger of PPS symptoms, causing fatigue in almost two-thirds and muscle weakness and pain in about half. At least half of polio survivors also reported symptoms of chronic stress, including feelings of anxiety and trouble falling asleep because their "minds are racing."
What's worse, external stresses like Sept. 11 just add fuel to a fire that's already burning inside polio survivors. Polio survivors work more hours of overtime and take fewer sick days than do nondisabled workers. Our international surveys found that polio survivors on average report 23 percent more pressured, hard-driving, time-conscious and overachieving "type A" behaviors than do those without disabilities. It's no wonder we found that the more stressful type A behaviors polio survivors report, the more symptoms they have: fatigue, muscle pain, trouble falling asleep, anxiety, frequent headaches, neck pain, back pain and muscle spasms.
Why do polio survivors have more symptoms when they are under stress? Our research has shown that fatigued polio survivors do not release ACTH when they're under stress. ACTH is a hormone that activates the brain neurons that keep you awake and focus attention. The less ACTH released, the more fatigue polio survivors report.
Although we don't know exactly how stress triggers muscle weakness, cortisol may be the missing link. Cortisol is your body's anti-stress hormone, which puts a brake on your neurons so that they don't run wild when you're stressed and allow your blood pressure and heart rate to go through the roof. This braking effect likely results from cortisol interfering with neurons' ability to make proteins and use blood sugar, which is their only source of fuel. Such interference would be a significant problem for polio survivors with PPS, since their neurons' protein-making apparatus and ability to use blood sugar are already impaired [see PPS Forum, November 2001]. As important as cortisol is to survival, research suggests it may actually be harmful to motor neurons. When animals with damaged motor nerves are stressed, their muscles' endurance is reduced and there is a decrease in the number of muscle-activating motor neuron sprouts. Injecting the animal version of cortisol has been shown to slow or stop the growth of motor neuron sprouts.
So, an increase in symptoms and the potential for cortisol to impair and cause actual physical damage to neurons are both excellent reasons for polio survivors to decrease type A behavior and to reduce stress on their poliovirus-damaged and overworked brain-activating and motor neurons.