[nfbmi-talk] vision problem has people seeing things

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Vision problem has people seeing things | Detroit Free Press | freep.com

Dr. Lylas Mogk, an ophthalmologist in the Henry Ford Health System, wants to get the word out about Charles Bonnet Syndrome to ease fears. / SUSAN TUSA/Detroit

Free Press

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Patricia Anstett

 

BY

PATRICIA ANSTETT

 

DETROIT FREE PRESS MEDICAL WRITER

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Filed Under

Local News

Michigan

Henry Ford Health System

The Henry Ford

University Of Michigan

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Gordon Lyon of Waterford threads a needle for his wife, Joan Lyon, who has macular degeneration. For years, she saw flowers that didn't exist.

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Gordon Lyon of Waterford threads a needle for his wife, Joan Lyon, who has macular degeneration. For years, she saw flowers that didn't exist. / PATRICIA

BECK/Detroit Free Press

 

Elderly people who lose substantial vision from macular degeneration, strokes, glaucoma and diabetes are at risk of developing a little-understood problem

that causes them to see people or shapes that aren't there.

 

It's called Charles Bonnet Syndrome, a problem likely to rise as baby boomers get older.

 

For two years, Joan Lyon, 82, of Waterford saw little pink flowers on her living room wall and on the trees near her home most days, even in the winter.

 

More than 25 million American adults, including about 215,000 in Michigan, have significant vision loss.

 

Of those, 20% to 40% develop the syndrome, according to the American Foundation for the Blind.

 

There is no treatment. But once people know what they have, and that it isn't a mental condition, they learn to live with it. For reasons unknown, it usually

goes away after a few years.

 

Lyon's eye specialist, Dr. Lylas Mogk, a Henry Ford Health System ophthalmologist, wants to get the word out that the problem is benign so patients feel

better and the medical community doesn't mis-prescribe medication, such as anti-psychotics.

 

She said many of her patients like their visions and even may regret it when they go, as did one who missed her daily visions of a full-dressed Canadian

Mountie.

 

Seniors scared to admit they're hallucinating

 

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, 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 American have such bad vision that they

see poorly even with glasses. About 20% to 40% of them 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.

 

Contact Patricia Anstett: 313-222-5021 or

panstett at freepress.com