Coping with Memory Loss and a Changing Way of Life
David Huff with his wife Suzanne Huff at their home in Austin. David was diagnosed with a form of dementia known as Lewy Body Disease. Photo by Nathan Bernier/KUT NewsAudio clip: Adobe Flash Player (version 9 or above) is required to play this audio clip. Download the latest version here. You also need to have JavaScript enabled in your browser.
The Thanksgiving holiday give many of us a chance to spend time with our families. And for some of us, it means we have to confront the challenges our aging relatives are dealing with – like memory loss.
David Huff is 81 years old. He used to be a professor in the geography department at the University of Texas at Austin. Five years ago, he noticed something was happening to him.
“Well I had difficulty remembering things. Or who that person was that I was introduced to, or something like that,” said Huff.
Huff’s brother had already died of Alzheimer’s disease. So he thought he should get himself checked out.
“Getting to diagnose this disease was a real problem because they didn’t know much about it.”
The disease is Lewy Body Dementia, or LBD. It affects more than one million people in the United States. It’s actually an umbrella term for two things: ‘Parkinson’s disease dementia’ and ‘dementia with Lewy bodies.’ But many family doctors have no idea about it. The symptoms can resemble those of Alzheimer’s, which makes it even harder to identify.
“It is definitely under-diagnosed,” said Dr. John Bertelson, a neurologist in Austin. He says he diagnoses 20 to 30 cases of Lewy Body Disease per year. Usually in patients referred to him by general practitioners who are unfamiliar with LBD.
“I have the utmost respect for primary care physicians. It’s difficult to have the time to dig into these conditions, but Lewy Body Disease is absolutely one that should be considered in somebody who has a new diagnosis of dementia,” said Bertelson.
Huff was diagnosed by neurologists at the University of Texas Southwestern medical school in Dallas. He was prescribed a bunch of medications.
“Immediately after he started the medication there was an instant upsurge,” said Huff’s wife, Suzanne. “It was taking him back 20 years. His friends said, ‘Give me some of that. I want that.’”
But in the past year or so, she says, the effects of the disease have become more pronounced.
“He’ll get up at night. ‘Look at those ants on the rug. Look at those ants.’ I’ll say, ‘No, they’re not. No, they’re not. There are no ants there. Put your hands down. There are no ants there.’ ‘Oh, I guess you’re right.’ So far, we communicate very well on that,” said Suzanne Huff.
“This is one of the things that really is a problem because I don’t want to be restrained from doing what I’m doing,” said David.
Huff says his wife has been extremely supportive. For a college professor who spent 45 years working with his mind everyday, adjusting to his new life has not been easy.
“At the university, I was in a very creative environment. I loved going to work,” said David. “It was one of the most wonderful times of my life. Then to have that taken away. The noodle is what made the soup, you know!”
Every day brings new challenges. But Huff says with the help of his wife, he’s working hard to face them – head on.
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