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Couple fights against locked-in syndrome

A wife helps her husband cope with a cruel disease that ruins the body while leaving the mind intact.
/ Source: The Associated Press

Bonnie Veillette faces her husband with pen in hand, a yellow legal pad on her lap. She concentrates on his eyes.

"Do you want to say 'they're?' I have 'they're.' Is that right?" she asks patiently.

Bob looks up. Aside from the movement of his eyes and a weak nod of his head, his body is rigid.

"I have 'o-b.'" Is that right?" she asks, scribbling the letters on her pad.

His eyes — a bright blue — move upward again.

"'Obstacles?' Is that it?"

Bob gazes up toward the ceiling.

After seven minutes of this grammatical two-step, Bonnie announces her husband's thoughts to a visitor: "I took for granted my eyes. They're obstacles."

This laborious process of communication is a way of life in the Veillette home, where nothing is as it was.

In a family room filled with photos and crayon drawings by the couple's three grandchildren, a cushy, oversized couch competes for space with a hulking metal lift used to move Bob's inert body in and out of a high-back wheelchair. A daybed sits off to the side for the aide who stays overnight.

This is where these high school sweethearts, married 38 years, spend most of their days together.

A gifted and vibrant man — an accomplished jazz pianist and newspaper editor — Bob is stricken with a rare neurological disorder that has robbed him of his many joys. It allows him to think, to feel pain, to reason. But not to move, and not to speak.

And so Bob and Bonnie wage a constant war against this cruel irony.


Bob was carrying an extra 30 pounds on his 6-foot-2-inch frame, and he was determined to slim down.

He'd run at least six miles, four or five nights a week. Setting off alone after his evening shift as managing editor at the Waterbury paper, The Republican-American, he'd circle his neighborhood at 3 or 4 in the morning. A few times neighbors called the Naugatuck Police to report a prowler. A cruiser would pull alongside Bob and a voice would spill out: "Oh, it's you."

Running, reading Shakespeare and playing jazz helped Bob cope with life's stresses. On his shiny black baby grand piano, sitting forlornly in the living room these days, he would practice works by Gershwin, Joplin, Ellington, and lesser known composers.

Bob loved the complexity of jazz. "Jazz was exercise for my mind," he says.

Putting out a newspaper invigorated his soul. He loved working with young reporters, making sure they mastered the basics. This was no different from his Army days when he taught journalism at a Defense Department school in Indiana. He'd write long notes on students' papers, offering insight into his craft.

Bonnie, just three years younger than the boy who stole her heart in high school, was not immune to his critiques. When she went off to college in 1966, the year he joined the Army, they exchanged letters. Bob — always the editor — would return hers with grammatical corrections.

She'd always imagined him returning to teaching after he retired, perhaps working at a small college.

With tuition bills finally paid off for their kids, Stephanie, Greg and Mark, the Veillettes were looking forward to the next chapter of their marriage. Spending time alone together, going to movies, to dinner. Allowing themselves to dream about retirement, trips to Florida, the future.

"It was a nice, peaceful time," Bonnie says.


A minute's drive from the newspaper's offices, the reading room at the Silas Bronson Library is quiet as Bob takes his seat behind the baby grand. The cuffs of his white shirt are rolled up above his wrists, eyeglasses poised on his nose. His fingers slice across the keys, coaxing out "The Entertainer" like some ragtime player in a smoky lounge in the French Quarter.

It's a rainy Saturday afternoon — April 8, 2006 — but he's thrilled that 50 people turned out for his free jazz concert. He has put together a great show, with his friend Ed Kamienski playing the chromatic harmonica and a couple of singers rounding out the program.

Da-da daa-daaaaa — "I Left My Heart in San Francisco." The crowd is eating it up, oohing in recognition after the first few notes. The old hits keep coming: "Spanish Eyes," the theme to the "Pink Panther" movies.

"I think it's very important when you have a concert like this ... to play songs people know," he tells the audience.

Bob, the amateur showman, is in his element. In his dreams, he would make a career of playing the piano in a New York nightclub. In reality, he's been playing since age 7. Back then, his mother would shove him outside when she thought he was too preoccupied with the piano.

Bob's a realist. Piano-playing, he likes to say, "won't pay for the rent or the ravioli."

Before wrapping up the 90-minute show, he thanks the audience for braving the lousy weather and gives the library a plug.

"I firmly believe that you lose an institution like this, you might as well bring on the barbarians because this is, I think, the center of information that keeps us informed on a lot of things, and because of that we are better Americans for it," he says.

The show ends with the 1961 hit "Bluesette" by Toots Thieleman.

"And again, thanks for coming," Bob says, his words captured on Kamienski's audiotape.

They are the last words Bonnie will ever hear her husband utter.

About an hour later, he is lugging out the first load of equipment to his Jeep Cherokee. Something doesn't feel right. Sitting behind the wheel, he shifts the Jeep into drive to move it closer to the library entrance. He begins to feel dizzy.

"Knew something was wrong," he says now, slowly spelling out his recollections. "Turned off car. Put head down. Beeping horn. Blacked out."


Bob had a stroke that affected his brain stem, which controls such things as eye movements, breathing and speech. It left him paralyzed, unable to even smile at the woman he loves because he has lost almost all muscle control.

His senses are intact and he's able to breathe on his own. Because he can see, he communicates by moving his eyes up and down but he has trouble moving them sideways.

His condition has an unusual name: locked-in syndrome. Some estimates suggest 25,000 to 50,000 people in the U.S. alone have some form of the disorder.

Like Bob, most are at risk for developing pneumonia which, along with blood clots and infections, can be fatal. That's why Bonnie, often with help from two nurse's aides, tries to keep his airways clear. When he's occasionally wracked by violent coughs, she's at his side with a portable suction machine.

She gave up her job as a recreation aide for the elderly and added a new role to an already impressive list of responsibilities. Beyond daughter, wife, mother, grandmother, housekeeper, banker, personal shopper and driver, she is her husband's chief caretaker and champion.

Bob used to love his morning cup of coffee, a guilty pleasure abruptly forsaken because paralysis restricts his ability to swallow. Meals are delivered through a tube in his stomach, leaving him still famished afterward. But what's a wife for, if not to indulge her husband once in a while. So today, Bonnie places a teaspoonful of instant coffee thickened with a white powder on his tongue even though she knows he'll cough it up.

The prognosis for someone locked-in is pretty discouraging. Doctors told Bonnie the day after the stroke there was no hope for recovery. Jean-Dominique Bauby, whose book, "The Diving Bell and the Butterfly," became an Academy Award-winning film, lived exactly 15 months with locked-in syndrome before he died of a heart attack in March 1997.

It's been nearly three years since Bob collapsed. His chances for motor recovery are limited. But doctors say as long as he can avoid pneumonia or infection, his chances of long-term survival are much better.

Adam Granger, a Brookfield therapist who specializes in brain injury and stroke and works with Bob twice a week, believes progress — albeit slow and measured — is possible. Much of his work focuses on keeping Bob flexible, preventing his limbs from stiffening and becoming too painful.

Cracking jokes about Bob's tolerance for pain, Granger hoists his 190-pound patient onto a padded platform at his rehabilitation center. Bonnie kneels behind Bob to steady him while Granger guides his body in a circular motion. They're trying to teach his brain to find new pathways to move his muscles.

In recent months, Granger has helped Bob strengthen his neck. He can now move his head from side to side — just enough to "drive" a mechanical wheelchair by pushing against control pads on the head rest.


Bob's slender frame sits rigidly in his wheelchair, a blue fleece blanket covering him from the chest down. His eyes scan the front page of the newspaper, clipped with clothespins to a hanging sheet of poster board. He stares silently at the page for what seems like hours, reading the stories, studying the photos, critiquing the layout like the editor he will always be.

Like the rest of his body, his eyes have betrayed him. One of the many consequences of his condition is an involuntary rapid twitch of his eyes that has partially impaired his vision. It makes it difficult to use electronic communication systems that detect eye movement, so visitors must recite "the letter board," a list of commonly used letters of the alphabet — e, t, a, o, i, n, s.

Bob selects the letter he wants by looking up to say "yes" and methodically spelling out entire words.

Bonnie pulls a folder from a desk drawer in the dining room. Inside is a stack of papers about an inch thick that she has kept since the stroke. They're filled with Bob's thoughts, painstakingly transcribed by her and their children.

One from last November reads: "Mortality is just a word really. We really don't understand it until we are close to death."

Another refers to the Shakespearean tragedy "King Lear," the story of a father who must persevere through great psychological, physical and emotional torment. It reads: "Like Lear, I endure."

But this is about more than enduring. Bob wants to be vital. And Bonnie wants that for him, too.

His social worker and a friend are helping Bob write a book about his experiences, similar to the memoir written by Bauby, who was the editor of French Elle magazine.

Last year, Bob and Bonnie appeared at the Connecticut state Capitol and asked legislators to spend Medicaid funds on home care for the seriously disabled, not just nursing home care. He's working with the singer Tony Orlando to pass similar legislation on the federal level.

The expense of keeping Bob at home has been astronomical. He and Bonnie have had to cash out retirement accounts, apply for state and federal assistance, and seek donations of equipment such as a hospital bed and a wheelchair. They've had to retrofit the house, installing a $6,000 generator primarily as a power backup for occasional oxygen treatments.

Friends have organized charity road races and other community fundraisers to help cover Bob's needs, such as a $30,000 used handicapped accessible van. But Bonnie still spends, out-of-pocket, at least $2,000 a month for supplies, physical therapy and nursing care.

Because Bob had just turned 61 when he had the stroke, he fell into a no man's land, leaving him ineligible for Medicare coverage until he was 100 percent disabled for two years. He finally got coverage in October.

Despite the challenges of navigating the health care system, Bonnie can't imagine abandoning her husband in a nursing home.

"I looked at that place and I couldn't do it," she says. "I just came out of there and said, 'No.'"


Yet another stranger is sitting in Bob and Bonnie's family room. Visitors are commonplace since Bob's stroke. Home health aides, volunteers, a therapist, a social worker. A nun visits weekly to read Bible passages to Bob, a Catholic who believes his faith has helped carry him this far.

Today, a salesman has brought along a $16,000 text-based electronic gizmo. Bob and Bonnie keep searching for a communication system that's easier than the letter board.

Like some machines, this one presents its own hurdles. Bob can't seem to focus on the letters.

This is when he spells it out for the salesman: "I took for granted my eyes."

After the man leaves, Bonnie mentions another system that features a cap with electrodes that attach to the scalp. Bob is motivated by the possibilities that technology can deliver. One of his first messages to his family almost three years ago was: "Don't give up on me."

As Bonnie talks, his eyes look up several times. That means he's interested. Bob wants to live.