DORAL

Display raises awareness about ALS

Limbless mannequins on display at Miami International Mall draw attention to the helplessness of patients with Lou Gehrig's disease.

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The Miami Herald

What started with slight weakness in his right hand left Thomas W. Ohlson with a lucid mind trapped inside a body that stopped working.

Ohlson, a father of three from Hollywood, was diagnosed with amyotrophic lateral sclerosis -- also known as Lou Gehrig's disease -- in 2005.

The condition, also called ALS, affects nerve cells in the brain that control muscle movements. Once nerve cells die, muscles no longer receive messages. When chest-area muscles fail, so does the ability to breathe.

To raise awareness, the ALS Association's Florida chapter displayed 150 limbless mannequins at Miami International Mall from Nov. 13-15. The exhibit, titled Piece by Piece, chronicles the plight of ALS victims.

The exhibit will be displayed 3 p.m. Friday at Miami Beach Community Church, 1620 Drexel Ave.

At the exhibit, 150 mannequin torsos are decked out in black T-shirts, placed to resemble a cemetery. Each mannequin represents the life of a South Floridian claimed by ALS. Affixed to each T-shirt is a note written by former patients or their family members.

Carol Clein, 63, said that her husband, Michael, was diagnosed in September 2006. By November, he was on a ventilator. He died soon after that.

``He wanted to see his grandson's bar mitzvah, and that was his last hurrah,'' said Clein, of Weston, who volunteered to work at the display. ``That's his shirt over there.''

``It happens so fast, you can be totally paralyzed within a year,'' said Dara Alexander, president of the Florida chapter, which supports 1,250 ALS patients in the state. Only half of those diagnosed seek assistance from the chapter because of ``pride or dignity'' concerns.

The Florida chapter, headquartered in Tampa, takes its lead from the mission of the national organization: ``To lead the fight to cure and treat ALS through global research, and to empower people with Lou Gehrig's disease and their families to live fuller lives by providing them with compassionate care and support.''

This includes advocacy, awareness and education as members and their families navigate the healthcare maze.

There are many decisions to be made as annual around-the-clock healthcare costs for an ALS patient can exceed $200,000, according to Alexander. She is concerned about the healthcare reform proposal and how patients will receive care, if it is passed.

At the state level, the chapter plans on bringing patients directly to lawmakers in Tallahassee to educate them and encourage funding for programs and services that will help ALS patients.

The chapter also wants to draw attention to the disproportionate amount of soldiers being diagnosed with ALS. A study by the national organization found that people who serve in the military are at greater risk of contracting the disease.

``You are twice as likely to get ALS if you've served in the military,'' Alexander said.

Ohlson, 46, joined the U.S. Army in 1990 and for a time worked at the U.S. Southern Command in Doral.

``These days, I get my meals through a feeding tube, need a breathing machine to sleep, cannot speak, and am confined to a wheelchair,'' he said.

After being awarded a special assignment in Austria with the U.S. State Department, in 2005, Ohlson noticed weakness in his right hand. He thought he had carpal tunnel syndrome.

The once-avid weightlifter said he was ``in the best shape of his life'' at that time. Then he was diagnosed with ALS.

Ohlson now sits at home in Hollywood and thinks about what he once had.

``The fact that I may never see my son grow into the mature, responsible man I know he will be, or that I may never walk either of my daughters down the aisle at their weddings, or that I may never have the chance to grow old with my wife, tortures me,'' he said.

What he treasures now are memories and each day that he has left.

``This horrible affliction has taught me one invaluable lesson,'' he said. ``Stop always looking to the future for happiness and appreciate what you have right now.''

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