Former model and husband share Alzheimer's story at MUSC

Barbara Smith, known as B. Smith, still knows how to make an entrance. The first African-American woman to appear on the cover of Mademoiselle magazine back in 1976 is as striking as ever, graceful in high heels with a ready smile as she visits the Medical University of South Carolina.

But these days she’s not modeling. Or doing her TV show. Or running her restaurants.

Smith has Alzheimer’s disease. So she and her husband, Dan Gasby, are now using her visibility to raise awareness about the toll the disease can take and the need for funding for research on ways to prevent and treat it.

During their tour of MUSC, Steven Carroll, M.D., Ph.D., chairman of the Department of Pathology and Laboratory Medicine, shows the couple something he thinks they’ll find interesting: MUSC’s brain bank, more formally known as the Carroll A. Campbell, Jr. Neuropathology Laboratory.

Smith is hesitant to get too close to the human brains carefully preserved in a room in the Walton Research Building, but Gasby leans in. Carroll explains the bank’s purpose.

“What we’re doing is banking brains from patients with neurological disease so the tissue can be distributed for scientific study to people who are trying to address these kinds of diseases.”

Smith and Gasby know all too well how important that is. The couple, together for 25 years, have been dealing with Alzheimer’s for about five years, Gasby said. That’s when he started noticing early symptoms.

“She was a person who literally could do everything and could synthesize vast sums of information and data and people,” Gasby remembers. “She ran a restaurant or was the center of attention shooting a TV show or walking down a runway, so she had to be able to see many people, deal with them and be able to maintain a certain consistency and a sense of calm in the eye of the storm.

“When we got married, we believed two as one could move and make millions. And we’ve done it. But the way she processes things now, it’s not the same,” he says. “She’s not processing what she once did.”

Alzheimer’s disease, the most common form of dementia, affects an estimated five and a half million Americans. A disproportionate number of them are African-American, due in part to a higher rate of risk factors such as high blood pressure, high cholesterol and diabetes.

In South Carolina, which has the fifth highest number of African-American residents in the country, the numbers are soaring. By 2025, almost half of all South Carolinians 65 and older will have the disease, according to the Alzheimer’s Association.

The disease often sneaks up on people. The first sign is usually when someone has a hard time remembering something they just learned. Symptoms worsen over time, causing not just memory loss but behavior and mood changes and ultimately problems with essential functions such as swallowing.

Carroll, who is part of the national Alzheimer’s Disease Genetics Consortium, works with investigators at MUSC and other institutions to identify genes involved in causing Alzheimer’s. He’s also working on an effort led by Lotta Grahnolm, Ph.D., director of the MUSC Health Center on Aging, to spot new biomarkers to help doctors determine when a person is beginning to develop the disease.

“The reason that’s important is because we suspect the reason a lot of the candidate therapies are failing is we’re not getting them to the patients early enough in the course of their disease,” Carroll says.

He’s also putting together a task force to create an Alzheimer’s disease research center at MUSC. It would be one of only four in the Southeast. Carroll hopes it will open in about five years.

The center will be a welcome addition to a field with limited resources. Carroll says it’s tough to get adequate reimbursement from insurance companies for Alzheimer’s care, and there are too few geriatricians.

There’s also too little funding to cover the scientific investigation this complex disease requires as researchers hunt for new treatments and a cure. But Carroll hopes that is changing. “We recognize this is basically a growing problem in the state and we are mustering all the resources we can to provide the care for these patients and new opportunities for treatment.”

Gasby says patients aren’t the only ones affected by the disease. Caregivers suffer too. “Sometimes I scream because Alzheimer’s is such a jealous disease. It takes everything from the caregiver and gives nothing back.

“Here’s the toughest thing. My wife can’t articulate what she used to. I can see it in her eyes, I can see it in her smile and I can see the frustration of not being able to get the words out.”

So Gasby is the one whose words have to do the work for both of them as they tour the country, promoting a book they’ve written about their journey and the critical need for more funding to beat Alzheimer’s.

Along the way, they’re also learning about the disease that neither expected to be part of their lives. Alzheimer’s has left Smith essentially untouched on the outside while wreaking havoc in the former model and entrepreneur’s brain.

Gasby says seeing the MUSC brain bank really brought home the toll that neurodegenerative diseases can take. “I think it was probably the single most important part of my trip to come into contact with what a healthy brain looks like and what an unhealthy one or one that is showing signs of abnormalities.

“It was fascinating, and as a person on the front lines of this, brings it all home. We’re all in this together, and we’ve got to make sure healthy brains are seen as being just as important as a healthy diet.”

Carroll agrees, and says it’s important for people such as Gasby and Smith to tell their stories. It reminds the public and elected officials of the need for support and funding for a disease that affects so many but is still so mysterious. “The problem with this, and I’m talking nationally, is that for the last 25 years Congress has been told the cure for Alzheimer’s is just around the corner. It’s just a very tough disease.”

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To learn more about the brain bank, including how to donate, visit the website for the Carroll A. Campbell, Jr. Neuropathology Laboratory.