Looking back, Francis Jacob thinks she had symptoms of ALS long before she got a diagnosis. But one Sunday in late 2007 stands out as a turning point. "I walked into Sunday school that morning and my voice was garbled and I thought, what in the world have I done? It happened overnight like that," says the 67-year-old Brandon resident.
Thick speech and difficulty swallowing are just two hallmark symptoms of ALS, commonly known as Lou Gehrig's Disease, named after the major league baseball player who brought national attention to the disease when he was diagnosed in 1939.
Jacob, an avid tennis player, noticed not only garbled speech, but also that she was physically weaker. She blamed both problems on worsening rheumatoid arthritis. Doctors suspected she had suffered a stroke, but weren't really sure what was wrong.
But her condition continued to deteriorate. In March of this year she and her husband of 40 years, Jim, went to the Mayo Clinic in Rochester, Minn., seeking answers. By April, Jacob learned it was ALS. "It was as if the sky had fallen," says Jacob.
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ALS, amyotrophic lateral sclerosis, is a degenerative disease that affects nerve cells in the brain and spinal cord. The brain essentially loses the ability to communicate with muscles. The result: progressive weakness in the limbs, trouble speaking, swallowing and, ultimately, breathing. But cognitive function, vision and hearing are not affected. Some ALS patients live for a long time, the most famous example being the British physicist Stephen Hawking. Usually, however, patients live three to five years after diagnosis.
According to the ALS Association, about 30,000 Americans are living with ALS; about 5,600 new cases are diagnosed each year. It can strike at any age, but onset is most common in the 50s. Among younger people, men are more affected, but with age, the gender difference fades.
Because there is no single diagnostic test for ALS, patients often bounce from one doctor to another until they rule out every other possible cause for their symptoms.
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For Stephen Blume's father, the first symptom was slurred speech. "He had a passion for golf," said Blume, who lives in Clearwater.
"So we started asking how many beers he had on the course that day. For months we questioned whether he was drinking too much."
It took six months of testing and doctor visits before the elder Blume was diagnosed at the Mayo Clinic — which also diagnosed Gehrig.
The elder Blume died three years later at the age of 56. "It worked its way all the way down his body. It's a terrible disease," his son said.
Blume became an active supporter of the ALS Association. And when he heard that the University of South Florida and the local ALS chapter wanted to start a multidisciplinary ALS clinic and research center, he was eager to help.
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The vision at USF was a clinic where patients could see all their specialists in one location, in one day — for example, their neurologist, a physical therapist, a dietitian and a psychologist. Plus patients could enroll in local clinical trials testing new ALS drugs.
Two years ago, after several years of working with the ALS association, USF recruited Dr. Clifton Gooch, a neurologist with decades of ALS experience, from Columbia University to chair its department of neurology and spearhead the effort. The clinic found a home in the Morsani Center for Advanced Healthcare on USF's Tampa campus. Gooch brought in Dr. Tuan Vu to serve as medical director of the new clinic.
The only thing left was to find funding for a nurse coordinator who would manage the day-to-day clinic operations.
"Why didn't you tell me sooner?'' Blume said when he heard of that need. "I'll do that."
Blume, who earned his MBA at USF, and owns his own air-conditioning and plumbing business, donated $100,000. The clinic opened officially on Wednesday.
"With the launch of this clinic, we have a true multidisciplinary ALS treatment and research program at USF," said Gooch. "We expect to see 200 to 300 patients eventually, making us one of the larger ALS programs in the country."
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One of those patients now is Jacob. Her biggest day-to-day frustration is that she can't be understood on the telephone. "I'm an old Southern girl, we love to talk on the phone," she says.
She takes the only FDA-approved drug for ALS, Riluzole, which is not a cure, but temporarily slows the progression of nerve damage and loss of muscle function. Vu says it can also lengthen the life of patients with advanced ALS by three to six months.
Otherwise, treatment consists of managing symptoms like anxiety, depression, and nutrition and breathing problems. Jacob and her husband hold out hope for a new clinical trial Vu says will begin at USF in January. Stem cell therapy also sounds promising to Jacob. "We've got to fight this thing," she says.
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