Resident to chair celebrity tournament
One year ago, Basehor resident Jerry Manford was building a wooden deck in the backyard of his home in the Pin Oaks subdivision.
Today, he can't grip a hammer.
Or enjoy any other outdoor activities like playing golf or going duck hunting; things that he had done frequently in the past, he said.
Roughly a year ago, Manford, 39, was diagnosed as having amyotrophic lateral sclerosis (ALS), which is most commonly referred to as Lou Gehrig's disease.
Despite the condition, Manford has taken the illness in stride.
The father of three has replaced the outdoor activities he used to enjoy with more simplistic tasks.
Things like cooking breakfast for his daughters or taking them to swimming practice.
"If I can get that done, it's a pretty good day," Manford said.
"I'm living with ALS instead of dying with ALS," he added.
ALS is a neurological degenerative disorder that attacks motor neurons in the brain and spinal cord. Eventually, the disease affects the brain's ability to control muscle movement.
"My muscles twitch real bad," Manford said. "It's just constant and it never stops."
More than 5,000 Americans are diagnosed with ALS each year.
The life expectancy of someone with ALS is between two and five years and there is no cure for the disease, according to the ALS Foundation.
It's hard facts such as these that have Manford hopeful to bring awareness to ALS and those that are afflicted with it.
To do his share, he has accepted an offer to be the honorary chairman of the 19th Annual George Brett Celebrity Golf Tournament.
The two-day event is scheduled for Aug. 11 and 12 at Millburn Country Club, with proceeds going to the ALS Foundation.
For the son of a former Missouri state senator, chairing the tournament seemed like the right thing to do, to benefit both himself and others.
"It only makes sense to do something in public service," Manford said. "I don't mind being the poster child."
ALS comes unexpectedly
Manford was in the process of finishing the deck in his backyard that summer afternoon when the disease first reared its ugly head.
It was a hot Kansas summer day and Manford was outside trying to finish the deck.
But something happened halting the deck's completion.
His muscles started twitching and convulsing. Manford said he thought it was a heat stroke.
After several medical tests came back negative and through the process of elimination, Manford was diagnosed with ALS. It was a result he was ready for, he said.
"When they did tell us, it wasn't that much of a shock," Manford said.
Living with Lou Gehrig's
Manford's home has three levels and dozens of stairs. The disease has weakened his legs making it difficult to scale the stairs at times, he said.
He's prepared for the disease to take away his ability to walk. As a preemptive move, he's purchased a wheelchair.
"I'm sort of surprised I'm still walking," he said.
Although the stairs are an obstacle, Manford said he would not move to another home. He won't let the disease strip him or his family of the home they've known for the past 11 years.
"I'm not going to sell our house just because it has stairs," he said.
"If I leave, I let the disease take away my home and my children's home."
Instead, the family will make alterations to the house to help with his mobility, including installing a lift ramp and elevator in the house.
"It gives me the whole house and to me that's a pretty good deal," Manford said.
Hope for the future
Doctors don't know why a person gets ALS.
Manford said developing the disease wasn't something he ever worried about until physics or fate gave him the disease a year ago.
His eyes are open now and he sees examples of people beating the disease and leading normal lives.
A neighbor down the street has had ALS for 15 years. On a broader scale, author Stephen Hawking has had ALS for 30 years and continues to write books while battling the burden ALS brings.
The two examples exemplify hope for the future, Manford said.
"I came to find adversity doesn't build character, it reveals character," he added.
Recently, he was chosen to participate in a research study through the University of Wisconsin. During the study, he'll take a medical drug that has had promising results, he said.
But until that elusive cure is found, Manford said he'll continue to keep life normal for his family and himself.
He'll keep making breakfast for the kids and take them to swim practice.
He'll keep his job with the Federal Aviation Administration.
He'll keep fighting the disease that hasn't yet been defeated.
"You make the choice to stand and fight and live a normal life," he said.