By Patricia Anstett
McClatchy-Tribune News Service
DETROIT — Joan Lyon didn’t know why she had almost daily visions of things that weren’t really there.
“I’d tell my husband, ‘There are those flowers again,’” said Lyon, 82, of Waterford, Mich., who lives with her husband of almost 59 years.
Almost every day for two years, she saw trees covered in tiny, pink flowers, either on the house across the canal from her home or on the white living room wall. Her doctor suggested psychiatric medicines, which she said “quite offended” her.
Then came a visit to Dr. Lylas Mogk, a specialist in severe vision loss with the Henry Ford Health System. Within the hour, Lyon was diagnosed with Charles Bonnet Syndrome, an eye problem that causes visual hallucinations.
As America’s population gets older, more ophthalmologists realize that the syndrome exists. An estimated 25 million Americans have such bad vision that they see poorly even with glasses. Some 20 to 40 percent develop hallucinations associated with the syndrome, Mogk and others said.
It mostly occurs in people who already have severe vision loss caused by macular degeneration, glaucoma, stroke or diabetes, said Mogk, who has lectured nationwide on the condition and has a book with a chapter devoted to it.
“It rarely needs treatment; it mostly needs reassurance,” said Dr. Jonathon Trobe, a University of Michigan ophthalmologist. Doctors say they believe the condition more likely afflicts people who are socially isolated. Deprived of “sensory input” from things seen, “the brain goes in any direction it wants to go,” Trobe theorized.
First described in 1769, the syndrome has remained poorly understood, in part because many patients don’t want admit they’re seeing things.
“People don’t report it, even to their nearest and dearest,” Trobe said.
Mogk said patients worry they’ll be considered crazy and treated with anti-psychotic medicines or be admitted to a nursing home.
She gets patients to talk about the visions by asking: “Do you ever see things you know are not there?”
The answers pour out.
Mogk has collected drawings of visions from some of her patients. She hopes the sketches will educate others.
The first patient who described the syndrome to her was a man who said, “I’m wearing khaki pants today, and I know they are khaki, but they look plaid to me.”
Other drawings are geometric, with lines that are slightly askew, like a wiggly chain-link fence. Others see vibrant colors such as teal and olive crackers, Mogk said.
Lyon’s visions lasted two years and ended about two years ago. Her vision is waning with macular degeneration, but she has adapted her home with visual clues such as orange dots over the “low” button on her stove. The rest of life’s challenges, including her old visions, she laughs off.
“I appreciate the fact that I can see this much,” she said.