May 26, 2018
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Primary progressive aphasia: a disease that steals words

By The Chicago Tribune, Special to the BDN

CHICAGO — The day David Foote had to admit words were leaving him, he was standing at a high school blackboard lecturing on “Romeo and Juliet.”

Mercutio. Montague. Lady Capulet.

He knew the characters as well as he knew his bow ties. But now, poised to explain the play to a room full of teenagers, every one of those Shakespearean names escaped him.

His wife already had noticed changes in his speech. He had started scrambling pronouns. “I” exited his mouth as “they.” Nouns vanished.

Cathy Donnelly knew it was odd that her husband had anything less than perfect control of his basic tools. An English teacher who confuses words is like a carpenter who mixes up nails and screws.

“I’m fine,” he would say when she’d bring it up. “I’m fine.”

That day at the blackboard, he had to admit he wasn’t.

Foote was only 58 when he discovered he had a little-known form of dementia known as primary progressive aphasia, or PPA.

Alzheimer’s steals memory. PPA begins by destroying nerve cells in a part of the brain that controls language. In other words, it steals words.

“I can find the real world,” Foote said. He paused, revised. “Word. I can find words, but sometimes through circuitous routes.”

He was sitting in his Wilmette, Ill., living room with his wife. They agreed to be interviewed because a big conference on PPA is in Chicago this week, and though they haven’t discussed his condition even with some of their friends, they believe it’s important to help others understand the disease.

“It’s my coming out, I guess,” Foote said.

Now 66, Foote still looks like a parent’s reassuring dream of an English teacher. His full gray hair is as neat as his sweater vest. His smile and gentlemanly humor are intact.

But he says “toy” when he means “treat.” “Prominent” when he means “permanent.”

Sometimes he’s as articulate as you’d expect of a man who taught high school English for 37 years. Other times, he’s lost in a verbal maze.

“My life has been talking,” he said. “And teaching. And helping kids learn to write. And telling stories. I felt there was. I knew. I felt. I guess.”

His mind seemed to be scanning. Searching. Shuffling. Waiting. Finally, the words: “I felt parts of me were falling off.”

Reading is one part that has fallen off. If he reads now, he has to do it aloud.

And spelling. “Come on, I can do this,” he told himself when letters started going haywire. But he couldn’t.

And numbers.

“Here’s my watch.” He held up a wrist with a watch made for the blind. He punched a button on the side. The watch announced: “The time is 11:32 a.m.”

A few minutes later, his wife asked whether he could read the hour. He gazed at the round dial.

“It’s 10. No. It’s 11.” He looked up. “I don’t know.”

Because PPA creeps into a mind earlier than most dementias, it often goes unrecognized. Foote was lucky enough to find his way to Northwestern University’s Cognitive Neurology and Alzheimer’s Disease Center, where he was diagnosed — and learned the bad news:

There is no cure. Unlike stroke victims, people with PPA can’t recover speech through therapy. Eventually, memory goes, too.

At the same time, he learned that people with PPA often develop skills that don’t demand much talk. Some garden. Or build things. He has taken up watercolors. He also hangs on to his job as a docent at the Loyola University Museum of Art.

Some days he goes to a support group at Northwestern. It’s a place where people who have trouble talking feel safe talking to one another.

“I used to be able to,” he said. “To. Be able. Help.”

“Help other people,” his wife said.

She finishes a lot of his sentences. She pays the bills now, too. The numbers were too much for him. But he cleans and cooks, and if his trouble with measurements results in some strange dishes, she doesn’t mind.

“For a while there,” he said, “I was, I was driving in the evening and there was a little … “

He waved his hands, smiled, let the unspoken words drift off.

To prepare for this interview, Foote scribbled two lines of a Dylan Thomas poem on a small yellow sheet of paper. He picked it up to read.

“Do not go dentle,” he said. Paused. “Do not go gentle.” Pause. “Into there.”

The lines as he had written them were this:

Do not go gentle into that good night,

Rage, rage against the dying of the light.

“Fight it,” he said. “Fight it. I’m not fighting it to be angry. I keep raging to make sure I can keep doing things.”

Cathy reached out, clasped his wrist, blinked back tears.

“He’s the most upbeat, enthusiastic, joyful man,” she said. “But there’s going to come a time.”

Her words, too, drifted into silence.

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