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I have some local friends who are waging a campaign to raise awareness of Trimble Countians and others in the local region about the incurable disease clinically known as Amyotrophic Lateral Sclerosis, or ALS.
Bedford residents Bob and Dianne McKinney have a special interest in helping to raise money for research to hopefully find a cure for those diagnosed with ALS in the future.
Diane is coordinating a team of walkers to participate in the 2011 Louisville Walk to Defeat ALS. Her team is called “Bob’s Bunch,” and consists of more than 40 members so far.
Back in high school Bob and I were casual friends. I don’t recall that we had any classes together but we were both cast members of “Creeping Shadows,” the all-school play in 1969, the year Bob was a senior.
Bob, or “Boots” as he was then known to his friends, was one of the popular kids in school. He was active in the Future Farmers of America and a basketball star with the 1969 Raiders, at 20-9 one of the most successful basketball teams in Trimble County High School history. Bob always seemed to have a cute cheerleader attached to his arm.
After high school he went to Eastern Kentucky University for a year and a half before taking employment at the Dow Corning Corporation facility in Carrollton.
Bob met his wife, the former Dianne Vannarsdall, while both worked in the engineering department at Dow.
Diane was a Carroll County girl but the two made a life together in Trimble County where they raised two daughters and now have two granddaughters.
It was in 2008 that Bob started noticing a weakness in his hands. “He kept dropping things,” his wife said.
“I thought it was carpal tunnel” syndrome when he first began experiencing the symptoms, Bob said.
After numerous tests and consultations with physicians Bob was diagnosed in 2009 with ALS.
“We didn’t know it by that term,” Diane said. “I got on the internet and looked it up and I was shocked. You never dream about something like this. You couldn’t imagine the shock. You’re not expecting something like that. I wasn’t even prepared to think about it.”
ALS is commonly called “Lou Gehrig’s Disease,” after the Hall of Fame New York Yankees star who succumbed to the disease in 1941.
“We knew what Lou Gehrig’s Disease was but not ALS,” Bob said.
ALS is an incurable fatal neuromuscular disease characterized by progressive muscle weakness, resulting in paralysis, according to the ALS Association. The disease attacks nerve cells in the brain and spinal cord. Motor neurons, which control the movement of voluntary muscles, deteriorate and eventually die. When the motor neurons die, the brain can no longer initiate and control muscle movement. Because muscles no longer receive the messages they need in order to function, they gradually weaken and deteriorate.
Living with the disease has been a difficult transition for both McKinney’s.
“He had about five years in retirement before this started,” his wife said. “He still piddles around here but he has to take breaks. He’s been a handyman and has done a number of things around here on his own. That’s been hard for him to give up.”
Her husband is no longer able to perform some simple functions like writing. He hopes to do some mowing this summer but knows he will tire easily.
The disease affects people in different ways, Diane said. Sometimes it starts in the legs. “With Bob it was his hand, then up his shoulder. His speech as you may have noticed is affected and his swallowing. It’s on his left side now, too. It’s just a steady progression.”
Bob said there is no pain associated with the disease, “just weakness and muscle deterioration,” he said. “You can see my hand. See the difference? It just takes your muscles away. My arm is a little smaller now.”
Diane approached me a few weeks ago to ask if The Banner could help raise awareness of the disease locally.
“Bob’s not the only one that’s been affected by this disease in this community,” she said, citing the names of acquaintances who have died from the disease in recent years. “I just think it’s strange that in this little community there have been three or four others that I know of. There are lots of things that you have to prepare for. We’re remodeling the bathroom now to make it handicapped accessible. In time Bob will use a wheelchair for mobility. We have to think about down the road the things that we’re going to deal with.”
Diane said her husband is fortunate that there is a certified ALS clinic close by at the University of Kentucky Medical Center in Lexington. Bob is participating in a clinical trial there. While the trial will not provide a cure for Bob the couple hopes that the ongoing research will result in a better understanding of the disease and a cure in the future.
“We were very fortunate that he was diagnosed early,” Diane said. “A lot of people go months or years before they’re diagnosed. In some people the disease progresses very rapidly. Bob’s progression is slow to modest. His swallowing is already affected. Breathing is still good right now.”
When eating becomes a problem “they’ll put a feeding tube in my stomach,” Bob said.
“We didn’t tell our girls for a long time,” Diane said. “You just don’t want to tell them until you know for sure. It’s like once you say those words there’s no taking it back.”
“We plan for him to stay right here,” Diane said. “I have a sister that’s an RN and she’ll help. We have my family, friend support and church family,” she said. “That’s what gets you through this is your faith and your family and friends. We’ve had so many people to tell us that whatever we need, all we have to do is call. They call and they check on us. People are always willing to help out.”
The McKinney’s are members of Bedford Baptist Church. Both spoke highly of current Pastor Ferrill Davis, who has had extreme medical issues of his own in the past.
“Brother Ferrill is awesome,” Diane said. “He’s doing great at the church. It’s good to see people on fire for the Lord again.”
Bob lives by the mindset that “I’ve made ALS part of my life, not my whole life.” Is it prevalent on his mind? “You focus away from it but you still know you’ve got it,” he said.
“I guess you don’t want it to define you,” Diane said. “It changes the way you’re going to live the rest of your life.”
She said the couple is looking forward to taking a cruise with several other members of the TCHS Class of 1969 in May.
“We will still do some of the things that we want to do because when it progresses it will be harder to do those things,” Diane said.
Bob and Diane are living by the truth contained in Ephesians 5:15-16. “Pay careful attention, then, to how you walk ... making the most of the time.”
How you can help
Fundraising activities planned by “Bob’s Bunch” include the sale of cookbooks published by Diane’s sister, and collection canisters which will be placed in banks, stores and gas stations throughout Trimble and Carroll counties.
Residents are encouraged to join “Bob’s Bunch” in the Walk to Defeat ALS at Papa John’s corporate headquarters in Louisville on Saturday, May 14.
“We’re excited about the walk. It’s just a mile walk. It’s not that strenuous.” Diane said. “Our goal is to raise $1,000,” she said. “I think we will exceed that.”
raised $530 already.”be accepting donations for research.”