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Lou Gehrig's disease can't keep Steve Franks off the road

PINELLAS PARK — A doctor gave Steve Franks five years to live. That was five years ago.

But he knows that an early death remains inevitable and that before death comes he will be unable to move. And so he drives a black pickup with a trailer carrying reminders of what his body will become. Stiff, motionless.

He hauls 150 mannequins around Florida to demonstrate what Lou Gehrig's Disease leaves behind.

Franks, 50, bought the trailer and volunteered to drive this traveling monument created by the ALS Association Florida Chapter. It is part of a larger ad campaign known as Piece by Piece, which uses mannequins and their body parts in commercials and billboards to show how the disease slowly steals people's ability to walk, speak, eat and eventually breathe.

The incurable neurodegenerative disease — also known as amyotrophic lateral sclerosis, or ALS — affects Franks' mobility, forcing him to use his hands for balance. He speaks slowly because he is losing the finer controls of his weakening tongue.

A former golf course superintendent, Franks was diagnosed after he noticed his fingers cramping.

He is of average height, lives in a suburban home with a wife and an enclosed patio. He has twin daughters in college and a cocker spaniel. His father's job was tending a 250-acre estate, and he followed him in overseeing a golf course.

He represents every man like the mannequins he has chosen to drive, spreading a broad message that all are susceptible.

He is hopeful, having lived longer than the doctor said he would. But he cries when he thinks about what looms and what the disease took from him:

Walking his golf course. Checking sprinkler heads. Watching the sun rise and fade like a golf ball during sunrise and sunset.

"I've committed no crime and done no wrong, but I've been sentenced to death without any appeal," he said. "We couldn't do to our death-row inmates what this disease is going to do to me and to other people because it'd be cruel and unusual punishment. I just want people to know what it is. Lou Gehrig played ball in the '30s. No real progress has been made."

In November, he attended an annual memorial service where the ALS Association erected 150 mannequins at Ballast Point Park. Black T-shirts covered the torsos, bearing the names of living and dead ALS sufferers, their birth years and, in some cases, when they died.

He watched afterward as association members broke up the display and divided it among cargo vans and cars. He approached the leaders with a proposal.

"I have a truck I can drive," he offered.

The association had a rarely used handicapped golf cart. Through a series of Craigslist buys and trades, Franks turned it into the trailer.

He will drive the display to Joe Chillura Courthouse Square in Tampa on Jan. 15, Lykes Gaslight Square Park on Jan. 22 and the state capitol on March 3.

"I can still drive, and I enjoy driving," he said.

He believes he can drive nearly as long as he can live. If his feet go out, there are hand controls to run the truck. For now, he can put his feet to the gas, and take his trailer, and his mannequins, wherever they need to go.

Justin George can be reached at jgeorge@sptimes.com or (813) 226-3368.

Lou Gehrig's disease can't keep Steve Franks off the road 01/06/09 [Last modified: Sunday, January 11, 2009 6:09pm]
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