Living With Polio
Why We’re Here: Support Groups
Nancy Baldwin Carter, BA, M Ed Psych, Omaha, Nebraska is a polio survivor, a writer, and is founder and former director of Nebraska Polio Survivors Association.
A while back a nutritional product’s flyer, filled with impressive success stories, made the rounds. One of its claims had to do with a polio survivor, unable to lift her legs for 60 years—until she regularly began taking the product. Because of this miracle elixir, the ad says, she can now lift her legs to her chest. Say Hallelujah!
The week after that, the New York Times featured an article about the late effects of polio in which it mentioned that a certain polio survivor found her deteriorating breathing muscles so debilitating that she was forced to take early retirement. She now uses oxygen most of the time to help with her breathing.
We all get a good feeling when others discover solutions. Let’s hope that’s happening for these two survivors.
One wonders, though.
A magic potion that brings to life muscles that have lain dormant over half a century? Does that have the ring of plausibility to it?
And oxygen therapy for what very well could be respiratory muscle weakness? When we know that individuals who are developing progressive respiratory failure risk death unless the condition is treated with ventilation—not oxygen?
Enter now dynamic post-polio support groups.
Let’s say these two survivors find their way to our doors. Other members welcome them and gently guide them down the path to good decisions. The group directs them to reputable materials they can read about their conditions, and they hear about appropriate doctors to talk with and learn what questions to ask.
If it turns out that what they need are secret formulas and oxygen, wonderful—they already have them. They should feel reassured. On the other hand, we may, at the very least, save one of them some money in snake oil fees, and perhaps even stumble into the happy circumstance of helping to save a life.
Amazing power, put to healthful use.
Think of it—what a history for responsible service our post-polio support groups have! More than twenty-five years of newsletters featuring reliable research and current post-polio information. Of advocacy, spotlighting member needs in every direction. Of support, providing personal assistance, encouragement, referrals, and meaningful group discussion. And all of this through reaching out the hand of friendship to provide take-it-to-the-bank-trustworthy and right-on-the-button-accurate help and inspiration.
Sometimes our groups don’t hear enough cheers from the sidelines. The tremendous job we’ve done gets lost in each day’s mundane routine, lost in the haze of time. Groups may hit a momentary snag and begin to wonder about their viability.
Then the mail comes—and with it messages like this one recently received by a support group leader: “Seeing your latest newsletter brings a flood of so many memories, dating back from the time I met one of the most helpful persons on my road to learning all I could about post-polio. That person is you, my dear friend. I don’t know if I would be in nearly the same place as I am now, both physically and emotionally, without your strength of purpose, and the knowledge you are always there, so eager to share about what is happening to us as we continue through this mysterious journey.”
And with that heartening boost, we know it’s time to get back to work. The good we do sustains us. We know we cannot stop now.
THIS is why we’re here.
All columns originally published by Post-Polio Health International (www.post-polio.org)