A Pasadena woman undergoes surgery with no guarantee of treatment or positive results. She’s scared, but there isn’t much she can do as scientific advances have been slow.
Gloria Lucio had two pencil-sized holes drilled into her skull in April, part of a procedure to possibly combat her Alzheimer’s disease.
The surgeon may have injected an experimental gene therapy drug deep into her brain. Or, after months of tests, consultations and preparation, the Pasadena woman may not have received any treatment at all.
The willingness to endure such a surgery for a clinical trial with no guarantee of treatment seems extraordinary. But Lucio and her husband, Don Jones, acknowledge a biting reality: Even if she did get the drug, it may not work.
The substance that may have been injected — a virus carrying genes intended to produce a chemical called nerve growth factor — looked promising in a preliminary trial, but so have many other now-failed treatments.
Such are the options for someone with Alzheimer’s disease in 2010.
The Alzheimer’s Assn. recently estimated that cases of the neurological disease, which now affects about 5 million Americans, will more than double in the next 40 years — at enormous personal, social and economic costs.
The report was the latest in a drumbeat of dismal news about Alzheimer’s. In March, a Phase 3 clinical trial of the promising drug Dimebon failed to produce positive results — another highly anticipated experiment gone bust. Medications currently in use can only mitigate early symptoms; none have been found to slow the disease.
“There’s a feeling of desperation, not only among people with Alzheimer’s disease or mild cognitive impairment but also with their family caregivers,” said Gail Hunt, president of the National Alliance for Caregiving.
But behind the gloomy headlines, researchers say they know more about the cunning illness than ever before. They’re developing techniques to identify it in its earliest stages, and within the next decade they expect treatments to slow or forestall the disease.
Given the swelling numbers of those afflicted, any advance can’t come too soon.
“I want to get well,” Lucio said on a rainy morning, a few days before her April surgery. “I want my brain to be healthy. But I’m scared. The holes — how big will they be?”
Her son, Valentin, 18, was sitting nearby. He points to the tip of his pinkie finger. “The holes are this big, Mom.”
She nodded, still worried.
Lucio was reluctant to undergo the experimental treatment but, with a clear understanding of the situation, felt she had no choice. The disease had been making steady advances for years, quietly stealing pieces of her identity.
A former nurse-practitioner and political activist, she was afflicted with Alzheimer’s at an earlier age than most patients. Lucio is homebound now and no longer fixes meals or pays bills. Her short-term memory is a sieve, and her husband and son don’t leave her alone for long.
“How old are you?” she is asked.
“Sixty-eight,” she said, somewhat hesitantly.
She is 57.
“How big are the holes?” she asked again.
http://www.dimebonalzheimers.com/
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