HOUSTON, Texas (KTRK) — Wendy Rosenthal was 51 years old when she lost the ability to order her world.
Salt. Chair. Pen. Basic items and words that she could no longer recognize.
“I remember sitting down at dinner one night and I said, ‘Will you please pass me the salt?’ And she looked at me and said, ‘I don’t know what you’re talking about,’ says her husband, Lowell.
Lowell says those were the first signs of what would later be diagnosed in Wendy as frontotemporal dementia (FTD), a rare form of dementia that destroys cells in the frontal lobes of the brain, and with them, critical functions ranging from language recognition to feeling and behavior control.
Unlike more common forms of dementia like Alzheimers, FTD typically strikes a younger population, crippling victims in the prime of their lives. According to the Association for Frontotemporal Degeneration (AFTD), most cases occur in the age range of 45-64.
Wendy is described by her daughter Allison as a “firecracker, a social butterfly with friends everywhere she went.” She was in a thriving business with Lowell, selling library books to schools, when FTD began to strip away her livelihood.
“It’s progressed now to where she just doesn’t understand anything I’m telling her or asking her. And she can’t verbalize to me anything she’s wanting. It’s been hell. It’s been extremely difficult,” Lowell says.
“It’s sad now to see her kind of isolate because she doesn’t have the words to communicate with people,” Allison said.
Wendy is currently in a full-time memory care unit, but her family reports she is still active and in good spirits. Doctors at Houston Methodist’s FTD unit tell ABC13 patients with FTD don’t typically experience lasting pain or anguish. In essence, they don’t recognize they’re deteriorating. The suffering passes to caretakers.
“For the families, it’s like living with someone that is still active, who can move and do and say things, but is another person. So, you have lost the person that you knew, that was your family member,” says Dr. Belen Pascual, director of the Frontotemporal Degeneration Unit.
There is currently no cure or therapeutic treatment for FTD to stop or even slow the progression of the disease. At the Houston Methodist FTD unit, one of the only such specialized units in the country, doctors and researchers are working to better treat patients and performing groundbreaking trials to try to find answers.
“We are collaborating with a national consortium funded by the National Institute of Health (NIH) called “All-FTD.” Together with the University of Texas – San Antonio, we are the only frontotemporal dementia center in this part of the country. We are happy to be able to provide this service to families and patients with this problem. It’s very important,” Dr. Joseph C. Masdeu, director of the Nantz National Alzheimer Center at Houston Methodist that houses the FTD unit, said.
Dr. Masdeu says the team used Wendy’s case to establish a link between the spread of FTD and brain inflammation, and discussed another trial currently underway that spreads mutated genes through the brain’s pathways from the vital vector as a way of potentially replenishing lost proteins.
“We may be able to improve those patients who deteriorate relatively quickly. You see them beginning to have symptoms, and in three or four years unfortunately, they’re gone,” Dr. Masdeu said.
According to the AFTD, life expectancy for FTD patients ranges from 7 to 13 years after the start of symptoms. Right now, Wendy’s family is trying to cherish the smiles and significant moments. And lean on each other as they hope and fight for a cure.
“Your family, friends…lean on them because you’ll need it,” Lowell said in a message to other families who might be stricken with the horrific illness. “It’s a devastating disease and I wouldn’t wish it on anybody. And we need to find a cure.”
ABC News recently profiled the caretaking case of actor Bruce Willis, diagnosed with frontotemporal dementia in 2022. “Emma and Bruce Willis: The Unexpected Journey – A Diane Sawyer Special” is available to stream on Hulu and Disney+ platforms.
SEE ALSO: Bruce Willis’ wife Emma Heming Willis shares emotional update on Bruce Willis’ health
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