Life slowly consumed
Lou Gehrig's disease is advancing across the life of Tina Rodriguez, stealing her ability to drive, then to walk, and someday, to breathe.
By SHANNON TAN
Published November 3, 2004

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CLEARWATER - Tina Rodriguez has been reliving the same nightmare.

She watched the monster attack her father, paralyzing every muscle in his body until he suffocated. It had already struck her great-grandfather, grandfather and two uncles, destroying their arms, legs and speech.

For Rodriguez, Lou Gehrig's disease is a creature that ultimately prevails.

"It's this monster that debilitates you," Rodriguez said. "You wonder which part of your body's not going to work when you get up each day."

Rodriguez, 45, is the sixth member of her family to develop the lethal illness known as amyotrophic lateral sclerosis, or ALS. Doctors have told her to prepare to die.

Already, she sees the signs.

The muscles in her arms and legs twitch like worms under her skin. When she sneezes, she stands up quickly because of the searing pain in her stomach. It feels like she's constantly plugged into an electrical socket.

It's only a matter of time before she's able to travel only in her power wheelchair. The pain is getting worse.

Lately, she has been having tremors in her tongue. She wonders how long it will be before she loses her voice.

Each day, Rodriguez takes her 17 pills and vitamins from a miniature teacup engraved with the word "hope."

But she goes to bed wondering whether she'll wake up in the morning. She is scared her daughter might get ALS. Melisa, 24, wonders whether she should have children.

Only 5 to 10 percent of cases like Rodriguez's are hereditary. A child whose parent has familial ALS stands a 50 percent chance of inheriting the defective gene.

So when Rodriguez started stumbling two years ago, she knew she had the neurological disorder.

Within months, she had to quit her job at Shells Seafood and stop driving. She recently sold her Largo home to pay for medical expenses and moved into a house with more room for her to get around. It costs up to $200,000 a year to care for a patient in the advanced stages of the disease.

If Rodriguez loses the ability to breathe, she won't be put on a ventilator. She doesn't want to be a burden.

"The disease consumes you," said Rodriguez. "You have no control of your life - none."

Her great-grandfather was in his late 30s when he died. Doctors said he had cerebral palsy; now they think it was ALS.

The disease destroyed her grandfather, sending her father and his siblings to an orphanage.

Then ALS struck her uncle ****, her father and uncle George, who died only 16 months after he was diagnosed. She cared for her dad until his death at a veterans hospital.

"I've told researchers, "Look at my family," she said. "How many more people have to drop like flies? I want to save my family."

She surfs the Internet every day searching for a reason and hoping for a cure. She tried to participate in clinical trials for new drugs, but was rejected because she has had ALS for too long. In May, she went to Washington, D.C., to ask Congress for more money for medical research. She wants to help start a state registry and conduct epidemiological studies of ALS patients.

Rodriguez plans to participate in Saturday's Walk to D'Feet ALS in Tampa, which raises money for local patient services and research.

"Unlike cancer, we can't do surgery. We don't have chemotherapy," said Dara Alexander, president of the Florida chapter of the ALS Association. "There's no cure, there's no treatment and we don't even remotely know a cause."

There are more than 1,000 ALS patients in Florida, including 150 in the Tampa Bay area. Most will die within five years of diagnosis.

"Often they're told, "Go home, put your affairs in order,' " Alexander said. "It's total despair."

Another ALS patient in Largo designed a bumper sticker that states, "The Unexpected Happens. Live Life."

Tomorrow may never come for any of us, said Rodriguez, who clings to her faith.

"I personally refuse to look into the future," Rodriguez said. "I take it day by day."

She wants people to say the illness took her life, but not who she was.

Shannon Tan can be reached at shtan@sptimes.com or 445-4174.

IF YOU GO
The ALS Association Walk to D'Feet ALS is Saturday at 10 a.m., Al Lopez Park, 4810 N Himes, Tampa. Registration is 9 a.m. For more information, call Patti Palmer at 813 888-6900 or e-mail patti@innovativeplanners.com To contact the ALS Association Florida chapter, call 1-888-257-1717 or visit www.als-florida.org

[Last modified November 2, 2004, 23:14:10]