Polio survivors learn to cope with debilitating syndrome

By CHARLES W. JOHNSON / News Editor for the Southern Standard

Local polio survivor Linda Hale looks over some of the extensive material she has collected over the years concerning Post Polio Syndrome. (Charles W. Johnson photo)

Linda Hale looks fine as she sits in her spacious and well-appointed living room. In fact, the tall and neatly dressed 53-year-old looks as if she could take on any reasonably difficult physical task with no trouble at all. But unfortunately, nothing could be farther from the truth.

Hale is a polio survivor. She contracted the disease in 1956 at the age of 5. The effects of the illness were devastating. Like many children, she found herself encased in a leg brace for some time and had to deal with a number of surgeries. And now, after many years, the disease has come back to haunt her. Like the majority of other polio survivors, an estimated 75 percent, Hale now suffers from a condition called “Post Polio Syndrome,” or PPS.

This condition, also called Polio Syndrome or Late Effects of Poliomyelitis, is characterized by overwhelming fatigue, muscle weakness and muscle and joint pain. It also results in heightened sensitivity to anesthesia, which in some cases can be life-threatening, and cold intolerance, as well as difficulty in swallowing and breathing.

“There is no cure for post-polio syndrome,” Hale said, “which leaves many of its victims in wheelchairs and on ventilators for the rest of their lives. Ironically, the most effective treatment for the disease is rest and the use of assistive devices – the exact opposite of the therapy that helped the victims survive their initial encounters with polio years earlier. The only way to slow the disease is to use the muscles less, by sitting instead of standing, or using a wheelchair instead of walking.”

The problem is finally getting some national attention with a resolution presented by Pensylvania Sen. Arlen Specter to formally designate this year as the “Year of Polio Awareness,” but Hale said the issue needs some local attention as well. That’s why she wants to make the public, and local physicians, aware of the problem, especially since many doctors apparently know little about the condition and its effects.

This year is also the 50th anniversary of the polio vaccine which essentially eradicated the disease from the Americas, but polio has left in its wake 20 million survivors with at least 1 million of those in the United States alone. According to Hale, many of these survivors, like herself, have worked to get an education and make a life for themselves and their families, only to be hit again by this new form of polio – Post Polio Syndrome.

Hale said at times the outlook has seemed grim.

“It is very scary to look to the future not knowing how much longer you’ll be able to walk or care for yourself,” she said. “Sometimes the fear can be so overwhelming that you don’t know which way to turn. We just have to trust in God and believe that our families, friends and “new doctors” of today will help us face the challenges ahead, and possibly a whole new way of life.”

For further information, Hale recommends a support group for polio survivors and their families called “Polio Heroes of Tennessee” which is located at 529 Albany Drive, Hermitage, Tenn., 37076-1422. Another good source is Dr. Richard L. Bruno, author of “The Polio Paradox.” He can be contacted toll-free at 1-877-Post Polio, or on the Web at www.postpolioinfo.com/PostPolio.