ALS is powerless against man's imagination
Merlene Davis
Herald-Leader columnist

David Perry | Staff Bryan Osburn has ALS, or Lou Gehrig's Disease. He plans to participate in the upcoming Walk to Defeat ALS. Photo by David
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"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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Bryan Osburn recounted, using his computer that voices words, how his service dogs have saved his life. With him last week at home were his wife, Joan, and his caregiver, Jennifer Petro. Photo by David Perry | Staff




In his own words: finding faith and courage


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"How I deal with ALS? I can't start to tell others how to live their lives but I will tell (you) how I plan to deal with this disease.

'Number one: I turned my entire future over to someone with a lot more power than I have. I figure that God made me and God can fix me if I'm broken. I have total trust in my Lord Jesus.

"If we read the (Bible) we find that the power of prayer is greater than anything else in this world. I pray not just for healing but for God to use me as he sees fit. I also realize that his plans for me might not be the same as what I want.

"Number two: I remind myself every day how lucky I am. When my voice isn't clear enough for others to understand, I remember all of the times I have been able to speak clearly. I give thanks for that blessing.

"When my hand doesn't want to pick up a glass of water, I remember a friend of mine who didn't have an arm for most of his life. I give thanks that I have been whole for most of my life.

"Several times in the last few days I have stumbled. I know the ALS is working on my legs but I give thanks to God for the thousands of miles that my legs have carried me in the past.

"I could go on and on but I think I have said enough to let you know how I am dealing with ALS. I refuse to lay down and give up. I refuse to let this disease ruin my life. I will go on in spite of the hurdles and (obstacles).

"I have been blessed more in my life than most. I have a wonderful wife, fantastic children, and family who are willing to do whatever it takes to help, and my trust in God.

"If you have ALS and feel like you've run into a wall, join the crowd. Those of us with the disease know how you feel. We are used to modern medicine and miracle drugs fixing most problems. Well, this is a problem that doesn't have a man-made solution yet.

"When you feel like you can't go on, have a talk with the man above. I don't have an exclusive contract with him. He is willing to help us all if we will let him."

- Bryan Osburn, October 2006

If you go


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The Kentucky Chapter of the ALS Association Eighth annual Lewis Owens Walk to Defeat ALS and silent auction

When: Saturday. Registration begins at 8:30 a.m. with the walk starting at 10 a.m.

Where: Applebee's Park (207 Legends Lane). Proceeds go to the ALS Association - KY Chapter, a non-profit organization dedicated to finding the cause and cure of amyotrophic lateral sclerosis.





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Reach Merlene Davis at (859) 231-3218 or 1-800-950-6397, Ext. 3218, or mdavis1@herald-leader.com.

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