Site Map | Archives

Home › News › Local Politics

Slowly, Sen. Domenici's disease revealed itself

By Kate Nash
Friday, October 5, 2007

For 12 months, Sen. Pete Domenici thought it was a narrowing in his spine that made him ache, those close to him say.

That's what his doctors told him.

But Domenici's symptoms warranted another look, just to see if anything else could be the cause.

He got other opinions, in April and again in mid-September, and the news eventually pushed him to announce he won't run for re-election to his Senate seat, said Steve Bell, Domenici's chief of staff.

The diagnosis was frontotemporal lobar degeneration, an incurable, progressive disease that can produce erratic behavior, outbursts of anger or make it hard to understand what others are saying.

So far, there is no treatment or cure for FTLD, says Catherine Pace-Savitsky, executive director of the Association for Frontotemporal Dementias in Philadelphia.

Her group has been in contact with Domenici's office, and she hopes to work with Domenici to bring more publicity to the somewhat rare disorder, she said.

"The progression of the disease is very different in each person," Pace-Savitsky said. "Typically what happens is, there's a change in behavior or language and that moves to other areas."

The disease affects the ability to plan, to regulate emotions and reasoning, among other things. It eventually impairs movement and many patients die from problems swallowing, she said.

"It eats the personality, and often the insight becomes compromised," Pace-Savitsky said. "They're acting inappropriately, but they don't realize they're doing anything wrong."

There are no concrete numbers, but Pace-Savitsky estimates about 250,000 Americans have the disease. It is a fatal disease, she said.

"In general guidelines, people have between six and eight years from the time of diagnosis to the time of death," Pace-Savitsky said.

But at least Domenici and his family have a diagnosis for a disease that experts say is often hard to catch.

"For a year," said Bell, "his leg was hurting him, his back was hurting him, and we thought it was stenosis of the spine. Other people looked at it and said it's stenosis of the spine."

But his spinal specialist at John Hopkins University sent the 75-year-old senator to a neurological specialist, who saw progression of the disease at a visit about two weeks ago.

"She just said, 'Look, I have no idea what the future is going to be and what it is going to bring,' " Bell said. " 'But there has been some measurably slight progression of the disease, and you need to make a decision on whether you think you can go seven more years.' That was the question."

Domenici listened, Bell said, and minutes later went back to work at the Senate.

It wasn't until Monday of this week that Domenici decided he wouldn't run again. On Tuesday, he called President Bush, a longtime friend, to let him know, Bell said. On Wednesday, the senator told his staff, and by Thursday, Domenici was standing in his old high school gym, trying to explain the intricate workings of his brain to the world.

"It's just two paragraphs," he said of a sheet his staffers were handing out that explains the disease.

"It won't bother your eyes, but it's not anything very good to read, in my opinion," he said.

The decision to opt out of the life Domenici has always known was tough, said Bell, a longtime aide.

"You're dealing with a strange disease that 20 years ago no one knew even existed," he said. "We had to think about whether - and he (Domenici) said it himself - whether it was the right thing to do to run if you had some doubts, if you had some significant doubts about your ability to serve out an entire six-year term."

While there's no doubt the news is devastating, Domenici didn't let on Thursday during his announcement that he's not seeking re-election.

Instead, as he's done with his work over the years on mental health issues, the senator remained optimistic that scientists will find a fix for people suffering like him.

"No cure for my disease exists yet," he said. "But if we work hard enough, we may be able to cure people with diseases of the brain."