"They really don't know much more now than they did back then," said Jim Kolenda, speaking of amyotrophic lateral sclerosis, often referred to as "Lou Gehrig's disease."
Gehrig played 17 seasons for the New York Yankees before retiring in 1939 after being diagnosed with ALS. He died two years later.
"In 2012, my hand started shaking when I was painting my house. I thought it was from holding a paint brush for so long," Kolenda said.
Jim Kolenda and his wife, Debbie Pring, are dealing with ALS, also known as Lou Gehrig’s disease. The always fatal disease’s harmful effects are more than medical, spreading into their social lives and daily living. Members of the Sugar Grove Free Methodist Church are helping in many ways, modifying the couple’s home and helping with chores to try to mitigate problems.
Photo by Rob Andersen
When the symptoms continued, he consulted his doctor, who referred him to a clinic in Pittsburgh for a second opinion.
According to the ALS Association, A-myo-trophic comes from the Greek language. "A" means no or negative. "Myo" refers to muscle, and "trophic" means nourishment - "no muscle nourishment." When a muscle has no nourishment, it "atrophies" or wastes away.
"Lateral" identifies the areas in a person's spinal cord where portions of the nerve cells that signal and control the muscles are located. As this area degenerates it leads to scarring or hardening (sclerosis) in the region.
As motor neurons degenerate, they can no longer send impulses to the muscle fibers that normally result in muscle movement. Early symptoms of ALS often include increasing muscle weakness, especially involving the arms and legs, speech, swallowing or breathing.
When muscles no longer receive the messages from the motor neurons that they require to function, the muscles begin to atrophy (become smaller). Limbs begin to look "thinner" as muscle tissue atrophies.
There is no cure or treatment that halts the disease's progress. It is always fatal.
Kolenda said that the disease progresses at different rates for different people.
"Mine is fast. The average lifespan of ALS patients is two to five years, and the progress could slow or speed up," he said. "I could be gone by summer."
Although he had a battery of tests and blood work, the diagnosis is based on symptoms like failing strength, muscle twitching and a loss of endurance.
Kolenda's wife, Debbie Pring, said she works 10 to 10 hours a day at Cummins Jamestown Engine Plant, so someone comes in the morning to help Kolenda shower and shave.
"I use 15 percent more energy than a normal person; that's why I get so tired," he said.
"I can't hold books or magazines, and I get tired just turning pages," he added. "Even the weight of blankets and heavy coats are too much."
His breathing ability has declined to about 77 percent of normal, and the only medicine he takes related to ALS is to help him breathe.
He travels to the UPMC ALS Clinic in Pittsburgh every three months, and to Warren General Hospital where his breathing is monitored.
Pring said, "The cold bothers him so much, he can't go out. He can't even lift a glass of water or pour milk."
Kolenda said that he used to be very active, doing 50 situps and pushups every day, and when he was a student at Penn State, he ran long-distance races in track.
"I was a good runner," he said. "I even took up skydiving."
Kolenda volunteered about 50 hours a month at the Warren Area Elementary Center, was active in the Jaycees in Warren, and technically still is a board member for the Warren County Crime Stoppers, although he is no longer able to attend the meetings.
He used to volunteer at the Jamestown Audubon Society, feeding "Liberty," the resident bald eagle. "A couple of weeks ago, when the weather broke we went to the society's sanctuary on Riverside Road. I spoke to her (Liberty) like I used to, and she turned her head back and forth, then put her head back and just screeched. She remembered me," he said.
One of the things he has discovered, he said, is that "people don't notice you. I've had people walk right in front of me."
He added that many businesses have handicap access ramps in places difficult to get to with a wheelchair, and some places he has been to, he had to wheel his chair in the road to find a driveway for access to sidewalks.
Kolenda said their church, Sugar Grove Free Methodist, has been a blessing for the couple. The church's Random Acts of Kindness group installed a wider bathroom door for him, finished painting the house and installed a walk-in shower.
"One lady comes in once a week to vacuum, do laundry and do heavy lifting for me," Pring said, explaining that she has a bad back.
Another woman from the church prepares and packages meals that only need reheating.
Pring said members of the church ask what they can do to help.
The church will hold a benefit dinner to help with Kolenda's medical expenses at the church's recreation hall, 210 Jamestown St. in Sugar Grove, on Saturday, April 5, beginning at 5 p.m.
A chicken-and-biscuit dinner will be served with sides, beverages and dessert for a donation. Silent auction tickets will be available at the door, and Ron Carrington and A Touch of Gold will donate a concert, beginning at 6:30 p.m.
Kolenda said, "We are learning all kinds of things, and we've met lots of nice people," Kolenda said. "People ask what they can do. I know lots of people are praying for me, so I say, 'Just pray.'"
Asked about his cheerful demeanor, Kolenda said, "Sometimes I get upset, but there are good times, as well."
The couple described a recent trip to the Grand Canyon that they took "while there was still time."
He said when he was asked for an interview, it came to him that it might be God's will to get the word out about ALS, as many people don't understand, and maybe it would help to publicize the disease like what has been done for breast cancer and other diseases.
Pring, who kept her maiden name when she married Kolenda last October, said they had been seeing each other for about eight years.
Kolenda used to live on Warren's south side, but moved into Pring's house in Frewsburg.