As a top adviser in a financial services company, Susan Grant, 59, knew something was wrong when she found her thoughts so muddled she couldn’t remember if she needed to take the interstate north or south to drive home. More coverage: mySA Health By Richard A. Marini Published 10:24 p.m., Sunday, October 31, 2010
As a top adviser in a multinational financial services company, Susan Grant 59, was used to effortlessly juggling numbers, client details and other complex information in her head. So when she found her thoughts so muddled she couldn’t remember if she needed to take the interstate north or south to drive home, she knew something was wrong. “I’d find myself talking to clients and unable to think of a word,” she recalled. “So I’d stop in the middle of a sentence – and then I couldn’t remember the sentence itself.” A series of medical tests resulted in six diagnoses – everything from Alzheimer’s to drug overuse – before her condition was finally identified: frontotemporal disease, or FTD.
Left: This painting was done by Patricia Ross during the late stages of her disease. Right: This painting, more cheerful than the one at left, was done by Ross during the early stages of the disease. Experts say patients sometimes experience a burst of creativity.
FTD is a term used to describe several little-known disorders that progressively damage the parts of the brain that are in charge of personality, decision-making and language. Also known as frontotemporal lobar degeneration or Pick’s disease, FTD often is confused with – and misdiagnosed as – Alzheimer’s disease. Yet while Alzheimer’s destroys memory, FTD changes behavior. An easygoing person becomes aggressive. Someone fun-loving and outgoing is suddenly passive and withdrawn. But the most alarming difference between Alzheimer’s and FTD is the age at which it strikes. While Alzheimer’s is primarily a disease of the aged, FTD tends to occur between ages 40 and 65 – hence the nickname “baby boomer dementia.” It can affect people as young as their 20s. “It hits in the prime of life,” said Sarah Oxford, executive director of the San Antonio-based Frontotemporal Disease Association. “Most FTD patients are in their most productive years. They’re mid-career, with families, young children. The effects can be devastating.” “Family members say things like, ‘He’s not the Bob we’ve always known. It’s like he’s a different person,'” said Dr. Paul Schulz, director of the dementia clinic at the University of Texas Health Science Center in Houston. No one knows how many people are affected by FTD. Estimates range from 250,000 to 1 million people in the U.S. By comparison, more than 5 million are afflicted with Alzheimer’s. Symptoms vary by patient and, at least at first, often are explained away as being due to stress, lack of sleep, menopause, even depression. As the disease progresses, symptoms become more severe and can include paranoia, loss of empathy, reckless driving and lack of concern for personal hygiene. Patients also often suffer from what’s known as disinhibition, or a lack of social restraint.
Without any background whatsoever in film, Grant has made a documentary about FTD, titled “Planning for Hope,” which will be distributed to public television stations within the next three months. In it, she interviews family members and FTD patients. Their stories can be startling. One man, who smashed his truck with a baseball bat, is asked why he did it. He simply shrugs and says, “I don’t know.” As the disease progresses, so does the inappropriate behavior. After Michael Bigler of San Antonio choked his wife, Kay, he spent time in a psychiatric ward. Afterward, he would calmly discuss his plans to try again with her, their daughter and anyone else who cared to listen. Bigler is now in an assisted living facility, heavily medicated to help control his violent outbursts. “It’s a terrible disease,” his wife said. “It’s like a nightmare that never ends.” Curiously, the onset of FTD is sometimes accompanied by unexpected bursts of creativity. Patricia Bratton Ross, an FTD patient (and sister of FTDA founder Terri Bratton Schultz) who died in her early 50s, began painting soon after her disease was diagnosed. Her watercolors were bright and cheerful and surprisingly accomplished. As the disease progressed, however, they became darker and more disturbing. “The disease seems to activate the creative part of the brain,” Oxford said. “Makes you wonder if artists like Van Gogh or (Edvard) Munch may have had FTD.” The cause of FTD is unknown, although in about 40 percent of cases there is a family history. Autopsies of the brains of FTD patients often find accumulation of what’s known as the tau protein, which stabilizes the microtubules through which messages are passed between neurons in the brain. Too much of this protein, however, and the tubules collapse, disrupting communication between cells. Whatever the cause, there’s no treatment to stop or even slow the disease, and certainly no cure. “We can treat some of the symptoms, such as depression and anxiety, with medication,” said Dr. Raymond Faber, director of the neuropsychiatry clinic at the Audie Murphy VA Hospital in San Antonio. “Educating the family helps, too. It’s a comfort to know what’s going on with their loved one.”
Still, with the average time between diagnosis and death only about seven years, perhaps the best thing to do is to take steps to ensure the patient is as comfortable as possible. Death often is caused by something like an infection or because the patient simply stops eating. “Until they get to that late stage, I tell family members that if the patient smokes or enjoys eating sweets, to let them get what pleasure they can out of life. There’s no reason for them to worry about their cholesterol level.”
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