The Post-Polio Roller Coaster

A Bruno Byte
From Richard L. Bruno, H.D, PhD
Director, International Centre for Polio Education

Question:

I followed the plan in the Polio Survivors Handbook and I feel much better. I got a cane, can walk further and my pain and fatigue are much less. I think I'm cured! So I'm getting rid of the cane and going back the gym to get on the treadmill to lose some weight.

Answer:

Sometimes it’s actually not helpful for polio survivors to feel better because some go back to denying that they have PPS at all or that they are “cured.” They once again do all the Type A things they’d done before and PPS symptoms return as they again ride the “post-polio roller coaster:” Overdoing, crashing, recovering and then overdoing again.

Sometimes our patients intentionally test their limits, to see whether they really need to take care of themselves, to prove that they really have PPS. Other times patients make a conscious choice to use their energy and risk increasing symptoms—and possibly sacrificing some neurons—to do something physically taxing, and that’s their choice. After all, the fundamental tenet of The Post-Polio Institute program is for polio survivors to turn off their autopilot and decide for themselves what they’re going to do with their increased energy, muscle strength, and remaining motor neurons. However, it’s important to know that there is no “cure” for PPS, only symptom management.

But the post-polio roller coaster shows that for many, if not most, polio survivors, dealing with PPS will be the most difficult battle they will ever wage, even more difficult than fighting polio itself. Sadly, it is a battle that some polio survivors will not be able to join. In the early 1990s when PPS was “new,” 12% of Post-Polio Institute patients left the program, overwhelmed by anxiety and guilt, the fear of looking disabled, and the fear of being abused as they were as children. But, we keep the door open, hoping they would return.

Unfortunately, only 10% of all patients who left treatment returned to The Post-Polio Institute, typically about four years later, and always in much worse shape than we first met them. Those who walked out rolled back in. Even more unfortunate, 80% of those who returned quit treatment again! It will be no surprise to you that these patients were 25% more Type A and 20% more sensitive to criticism and failure than patients who completed treatment.

Bottom line: Looking PPS in the face and changing your lifestyle ain’t for sissies.