SPECIAL REPORT: Brain disease studied in Las Vegas changes personality, ‘who you are’

Losing Stephanie
FOX5's special report Losing Stephanie shows you a Las Vegas woman diagnosed with a rare dementia called FTD.
Updated: Nov. 25, 2019 at 11:00 PM PST
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LAS VEGAS, Nev. (FOX5) - LAS VEGAS (FOX5) -- It’s a disease that’s doctor’s don’t really understand, and it can produce bizarre behavior -- frontotemporal dementia, or FTD.

It’s a different form of dementia that can be more cruel than Alzheimer’s because it strikes people in the prime of their lives.

Doctors at Lou Ruvo Center for Brain Health in Las Vegas are searching for a treatment. For the families it’s an exhausting journey.

If you run into Stephanie Geyer, prepare to be love-bombed: “I love you all ... I love you .. I love you all!”

After 47 years together.. Stephanie and George Geyer’s daily life is pretty much the same. A mid-morning visit to a Capriotti’s in their Summerlin neighborhood is part of that.

Stephanie was diagnosed with fronto-temporal dementia, a disease that attacks the parts of the brain that control personality or speech, or both.

“She’s always been happy, cheerful, friendly, social. Fun-loving. A little bit ditzy but I found that adorable,” George said. “Probably 10 or 12 years ago, she started developing these compulsions like compulsive gambling, compulsive shopping, compulsive spending, compulsive eating.”

He said he thought she was going crazy, but found information on FTD and realized it fit.

“Stephanie’s case is really unique in that it’s brought out this personality. This really kind and caring and loving personality that she probably always was but it’s really exaggerated.”

“She’ll go around giving people money or she’ll go around telling people that she loves them, revealing this underlying compassionate personality.”

He said it gets overwhelming sometimes -- she’ll give money to strangers, hug people she doesn’t know.

Dr. Aaron Ritter and others at Lou Ruvo in downtown Las Vegas are working to understand what causes FTD. What they do know is that it isn’t Alzheimer’s.

“Simply put: Alzheimer’s steals memories, FTD steals who we are,” Dr. Ritter said. “That’s really the tragedy of FTD is that people lose their personality, the way they behave, their manners.”

And the outcome is always death.

The disease is the number one form of dementia in people under sixty.

“Part of our theory is the frontal lobes inhibit some of our behavior, so there’s something that’s keeping a cap on and with this disease, it’s uninhibited his underlying behavior,” Dr. Ritter said.

There are 20-30,000 new cases of FTD diagnosed every year.

“For the very first time we’re going to be involved in a FTD consortium that hopes to bring some clinical trials, getting enough people to enroll in clinical trials that we can find meaningful treatments for these diseases,” Dr. Ritter said.

“I’m sure it will get worse in the future but I don’t dwell on that,” George Geyer said. Stephanie’s vocabulary is down to a few hundred words.

Her only other form of communication is the piano, which she taught herself as a child.

There is no treatment for Stephanie and no one knows how long she has.

“Her world is shrinking,” George said. “But there are truths that Stephanie still knows.”

“This is my place, this is my husband that I love, George. 47 years,” she said.

FTD has more of a genetic component to it than Alzheimer’s, so it’s more likely to be passed down from parents to their children.

For more information on Lou Ruvo Center for Brain Health, click here. For more information on FTD, click here.