My ALS Story: Ted Bleymaier
With a strong passion for golf, Ted Bleymaier has not allowed his diagnosis of amyotrophic lateral sclerosis (ALS), or Lou Gehrig’s disease, to keep him off of the course. In fact, he’s combining that passion with his fight against ALS, and making a huge difference in the process.
Ted, a Stanford University graduate who served in the Air Force as a finance officer from 1974 to 1978, decided in 2000 to leave his 25-year career in the music and publishing industry to start his own business helping nonprofit organizations put on fundraising golf tournaments.
The business -- Golf for Goodness Sake -- which Ted runs with his wife, Annie, helps nonprofits raise money in much the same way charities do through marathons or walkathons, he says. In the past 11 years, the business has put on 200 golf tournaments in 20 cities and has helped raise nearly $12 million for nonprofit organizations.
“It’s been very enjoyable working with my wife and working out of our home,” Ted says. “And we’re still functioning and doing that in spite of my ALS.”
In 2011, Ted noticed that his foot began to drag, and after undergoing 20 sessions of therapy with a chiropractor, the foot failed to respond. In January 2012, he was referred to a neurologist, and after a series of tests and MRIs to rule out other conditions, the doctor diagnosed him with ALS.
After visiting the local ALS Association office, Ted became aware that ALS is a service-connected disability and was immediately referred to Paralyzed Veterans of America to help him navigate the process of obtaining benefits.
“Within one week, I received my official designation of 100 percent disability, which was a total surprise,” he says. “I can’t begin to think where we’d be without it right now. We’ve been extremely blessed with what they’ve provided. And right from the start, they’ve wanted to help me stay in my home as long as possible.”
And right now, Ted is doing exactly that – living comfortably at his Tennesssee home on a golf course with his beloved wife and dog. The disease forced him to give up playing golf in September 2011, but that hasn’t stopped him from loving the game.
“I don’t get to play, but I still get to look at the course,” he says. “I’ll go out in my wheelchair with my dog and roam the course on the cart path.”
Ted also continues to stay active with his golf tournament business and is helping to plan 17 golf tournaments this year. He’s also used the business to help the ALS Association raise money and spread awareness of the disease.
Ted also carries a copy of Lou Gehrig’s speech in his pocket and even reads the speech at various events, including local baseball games. “Everyone knows Lou Gehrig, so I’ve used that as a springboard to share and raise a level of awareness about ALS,” he says.
And despite the challenges associated with ALS, Ted maintains a strong spirit and positive attitude, and is thankful for his friends and family – particularly his two daughters and wife of 36 years.
“It starts with an attitude of gratitude,” he says. “I have a strong faith in God, and that is sustaining me. I try to take each day, even though there’s continual deterioration physically, and be thankful for the little things. I’m thankful that I can still move, even though I don’t move as much as I used to. And I’m still thankful I can see the golf course, even though I can’t play it.”
Brittany Ballenstedt is a freelance journalist whose work has appeared in several publications, including Government Executive, National Journal, Technology Daily and NextGov.com.