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Disease powerless vs. man's imagination

"I want to sky dive," said Bryan Osburn when I visited with him and his wife, Joan, last week.

Normally I would think anyone who jumps out of an airplane is a couple of bricks shy of a load, but for Bryan Osburn, I really hope he gets his wish.

Osburn, 51, has ALS or amyotrophic lateral sclerosis, commonly known as Lou Gehrig's disease.

It is a progressive neurodegenerative disease in which cells in the central nervous system that control voluntary movement stop working.

With no messages signaling movement, the muscles weaken and eventually atrophy. Patients then lose the ability to control voluntary movement or even to move at all.

Involuntary muscles such as the heart and the digestive system are not affected. The lungs, however, can be.

Osburn cannot walk, eat or drink on his own other than to taste or sip, and he breathes through a ventilator.

So, to see a man who is connected to a ventilator while seated in a wheelchair and speaking through a computer, smile at the thought of falling from the sky, free of all his earthly conditions, well, that's rather special.

"In my dreams," he wrote, "I walk, talk, play with my grandkids. I ride my horse at Cave Run and fish the Cumberland River."

But, "life is real and not a dream," he continued. "My food is given through a tube," he wrote. "I breathe through a trache with help from a ventilator. I speak with a computer. This is ALS. This is my life."

If about now you are feeling a sense of pity, you need to tamp that down quickly. Osburn has not let any of that stop him from living life as fully as his disabilities will allow.

No shrinking violet here.

In fact, Osburn has formed his own team for the eighth annual Lewis Owens "Walk to Defeat ALS" fund-raiser. It's his second year. University of Kentucky Football Coach Rich Brooks is the honorary chairman.

The walk is named for former Herald-Leader publisher Lewis Owens. He was publisher from 1988-1996. His widow, Janetta, is a founder of the local and state ALS chapter.

Osburn is also a board member of the state chapter and has traveled to Washington, D.C., to advocate for more funding for research and for stricter reporting requirements of the disease in search of a cause.

Plus, he talks with whomever he can about the disease, about support, and about his unchanging faith in God.

Your pity or sympathy would be better served elsewhere.

Born in West Virginia, Osburn worked in the coal mining industry before it slowed.

He, his wife and son moved to Lexington in the mid-1980s and then Garrard County, where he worked as a machinist. Injured on the job, resulting in burst discs in his lower back, he was pronounced 34 percent disabled.

He could have taken disability, but, being in his mid-30s, he chose not to.

He volunteered at his son's school and decided to try his hand at teaching at the elementary level. He enrolled at Eastern Kentucky University, progressing from a walker to a cane to get to class.

That's where he met Joan in 1995, after his divorce.

Then one day, after teaching kindergarten at Southern Elementary, Bryan Osburn was talking with his wife. It was October 2005.

"I stopped him and said, 'Bryan, if I didn't know you better, I would swear you had stopped somewhere along the way and had more than a few drinks,'" she said. "His voice was so slurred it was unreal."

They first thought perhaps he had suffered a mini stroke, but there were no medical signs of that. Perhaps it was cancer.

Bryan Osburn's speech would continue to come and go, sometimes his voice would be hoarse.

A year later, while visiting a stroke specialist at the University of Kentucky, they were referred to Dr. Edward J. Kasarskis, an ALS specialist. A month later, they had the diagnosis.

He had bulbar onset ALS, which affects the muscles of the face and neck first, Joan Osburn said.

Even before the diagnosis, by August, 2006, he was using a voice amplifier to speak at school. It was an unsatisfactory alternative to being able to talk to and be heard by his students.

Bryan Osburn is still teaching, but not in a classroom. He has been a touchstone for patients and families all over the world who are dealing with ALS,.

He started his own Web site, bosburn.com, and initially detailed his experiences but hasn't been able to keep it up lately.

No one knows what causes ALS, and there is no cure.

The Osburns have caretakers who help with his care, and they have the support of family and friends. The care of a patient is expensive, costing as much as $200,000 a year, which is why the Osburns ask you to participate in or contribute to the walk by donating at www.alsaky.org or by calling (800) 406-7702 or (859) 294-0223.

"I have a wonderful wife and carers," Bryan Osburn wrote. "I am a blessed man. It is not in me to quit. I can still make a difference. ALS does not have to be the end."

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