Busheys hope ALS walk builds awareness

By Tony Lascari tlascari@mdn.net | Posted: Wednesday, October 3, 2012 1:00 pm

Jonathan Bushey has turned life with Lou Gehrig’s disease into an opportunity to educate.

Amyotrophic lateral sclerosis, or ALS, is a neuromuscular disease that is characterized by a degeneration of the motor neurons. These cells in the brain and spinal cord control muscles and as they die, muscles weaken. This can affect a person’s ability to move, speak, swallow and breathe.

In 2008, Jonathan went to the doctor for leg pain, thinking it could be a sports injury. He never expected it was a terminal disease.

“Four years ago, I was able to walk,” he said. “I was an athlete. I played racquetball, golf, football. Then it progressed to where I had to wear a brace on one leg, a brace on two legs and then ultimately not being able to walk. It’s hard, but I treat every day as a challenge. The doctor, when I found out I had ALS, said you can stick your head under a blanket and let the disease consume you, or you can fight. I chose to fight and make people aware.”

Jonathan’s wife, Amy, is proud of how he has responded to the disease.

“He’s had a great attitude from the beginning of this thing,” she said. “He doesn’t get frustrated. He just adapts.”

When possible, Jonathan goes into the community to show people the effects of the disease. He visits his wife’s drama classes to talk with students. “I’m on the board of Big Brothers Big Sisters,” he said. “I have people come over and take me to lunch.”

The support of the community allows Jonathan to focus on the future, rather than worrying about struggles in the present.

“You can survive even though you’re given a terminal disease,” he said. “You have to cherish every day.”

ALS progresses at different speeds for different people. The average life span after diagnosis is three to five years, but some people live as many as 15 years. Jonathan hopes he reaches the higher end of that spectrum.

The Busheys have faced the reality of the physical changes to his body. His muscles are weakening. His voice isn’t as firm as it once was. He now relies on a wheelchair to keep him mobile. He needs assistance with basic tasks like getting bathed and dressed. But, it’s all been taken in stride, Amy said.

“Once you get over the initial shock of it and the changes, it just becomes life,” she said. “We have a good support system — that’s key.”

Jonathan plans to attend the ALS of Michigan’s Walk ’n Roll for ALS at 2 p.m. Oct. 7 at Emerson Park.

Jonathan’s friend, Kim Kosberg, helped bring the walk to Midland. She met Jonathan at Leadership Midland in 2004 and said his diagnosis flipped her world upside down.

“It has completed reset my reaction on life,” she said. “He has the best attitude. I couldn’t imagine being given a hopeless, terminal diagnosis … He has taken it in such stride. You cannot have a bad day with Jonathan in mind.”

Seeing his experience has given her understanding and patience in life.

“He gets up and fights for every single minute of every single day,” she said.

Jonathan hopes area residents will participate in the walk.

“The hope with the walk is we can get help for other people who aren’t getting the support we are,” Jonathan said.

Amy said most insurance companies don’t cover home health care costs, but ALS of Michigan can help with some home health care needs. The Busheys waited about one year before they were able to start home health care services through the organization.

“That’s huge financially for families,” Amy said. “With the walk, the goal is to provide that without the wait time we had.”

Registration for the walk begins at 1 p.m. Get more information by visiting www.alsofmichigan.org