Paul Knapik: Walking To Recovery For Himself And Others

By Kaaren Valenta

Newtown resident Paul Knapik has participated in the 26.2-mile Boston Marathon Jimmy Fund Walk for the past two years for several reasons, among them the fact that he is a survivor of Guillian-Barre syndrome.

“I used to be a runner and one of my dreams was to run a marathon,” he explained. “I always wanted to run the Boston Marathon but I can’t now. So when a friend said he was doing the Jimmy Walk, I decided I needed to do it.”

The 17th annual Boston Marathon Jimmy Fund Walk, held on September 18, is the only event, other than the Boston Marathon itself, that is sanctioned by the Boston Athletic Association to use the historic 26.2-mile route from Hopkinton, Mass., to Boston. The walk supports the fight against cancer in children and adults at the Dana-Farber Cancer Institute, helping to raise the survival chances of cancer patients around the world.

Paul Knapik, 54, wanted to support the Jimmy Fund but he also felt that the walk was an important part of his ongoing rehabilitation from a disorder that could have paralyzed or even killed him.

“I thought I was in good health because I was running 20 miles a week,” Mr Knapik said, “but I hurt my knee helping someone move on September 21, 2003, and then my feet started to tingle and I developed shin splints in both legs.”

He began to lose sensation in his legs and soon had to walk with a cane.

“I had an MRI but it was okay, and the tests for Lyme Disease also were okay,” he said. “So my doctor suggested that I go to a neurologist. Then my knees started to jerk and within a matter of three weeks I had to use a walker.”

The neurologist said Paul Knapik might have Guillian-Barre syndrome (GBS), or maybe a tumor in his brain.

“I fell in the neurologist’s office when I went for the test results and I couldn’t get back up,” he said. “The fear was that the syndrome could keep going up and affect my lungs. If that happened, I might wind up on a respirator. Some people [with GBS] wind up only able to move their eyes.

“I was admitted to Bridgeport Hospital on October 17, 2003, and given two choices: a complete transfusion of my blood, with all the accompanying risks, or high-dose intravenous immunoglobulin — good blood cells that attack the disease — given over five days,” he said. “The syndrome stopped after the fourth treatment.”

Mr Knapik then had to go to rehabilitation because he could no longer walk.

“I had no sensation in the lower half of my body,” he explained. “I had spent three days in the emergency room and three weeks in the hospital. I went to rehab for three weeks on the seventh floor of the hospital, then I went for three days a week to a physical therapist in Newtown.”

Guillian-Barre syndrome is an autoimmune inflammation, perhaps triggered by a virus, that destroys the myelin sheath covering peripheral nerves, causing rapid progressive loss of motor functions. A high degree of inflammation can destroy the nerve itself.

The exact cause of this disorder is unknown. It may occur at any age but is most common in people of both sexes between the ages 30 and 50. It often follows a minor infection, usually a respiratory (lung) infection or gastrointestinal (gut) infection. Frequently, signs of the original infection have disappeared before the signs of Guillain-Barre begin. There was an epidemic of the syndrome in 1976 among persons who were vaccinated for the swine flu. Currently about three people out of every 100,000 contract the disorder each year in the United States. While fewer than one percent of the patients under the age of 15 die from the disorder, the threat increases with age. Nearly nine percent of those over the age of 65 who contract GBS die.

It was named after the two French physicians who described it happening after an enteric or respiratory infection. It starts with abnormal feelings in the legs followed by a floppy type paralysis (with tendon hammer reflexes gone) in the legs, often called “rubbery legs.” The paralysis creeps up into the arms, trunk and, in 50 percent, to the face and rarely into the spinal bulb where breathing is controlled. About one-third need help with breathing. Since the polio vaccine came into widespread use, GBS has become the most common remaining cause of acute neuromuscular paralysis.

“You could take a needle and stick it in my leg and I had no feeling,” Mr Knapik said. “Now I sometimes have a feeling like I’m walking on pebbles and I get tired more quickly than I used to. I was mentally determined to recover, however, so that’s why I need to walk. It took us eight hours to walk the 26.2 miles. My friend John Fenton, who lives in Naugatuck, goes on 60-mile, three-day walks. His wife is a cancer survivor and he had diabetes but by walking he can control it.”

Mr Knapik’s wife, Cheryl, who has worked at Stop & Shop for 12 years, also participates in walks — most recently a 3.1-mile walk for juvenile diabetes. The couple has two children, Heather, 17, a senior at Newtown High School, and Joseph, 12, a freshman. They have lived in Newtown for ten years.

A mechanical engineer, he built the family’s house on Platts Hill Road.

“We had lived on the water in West Haven but decided to move up here after our second child was born. While we built, we lived with my wife’s sister in Monroe,” he said. “I’d had a little remodeling business for 15 years, so except for the electrical and masonry work, I did all the work on the house [in Newtown] myself on evenings and weekends.”

Mr Knapik had worked for 23 years as a design engineer for a Connecticut company but was among those who lost their jobs last March in a downsizing because of declining projects. The family plans to stay in Newtown, however.

“I don’t want to move. I have an ideal spot here with a pond in my backyard,” Mr Knapik said. “Advance Realty sponsored me to get my real estate license. I also got an appraisal license.”

He had to raise $200 in pledges to participate in the Jimmy Fund walk, but donations still are being accepted. Anyone who would like to contribute can go online to www.jimmyfund.org and donate in Paul Knapik’s name using his identification number, 89744231.