By Emily Rooney
Jan. 25, 2012
WORCESTER — A year ago this month, former Massachusetts Gov. Paul Cellucci went public with the fact that he is suffering from ALS, better known as Lou Gehrig’s disease. He’s been maintaining a full work schedule while at the same time spearheading a $10 million fundraising drive at UMass Medical School aimed at research into ALS and other neurodegenerative diseases.
Cellucci deftly operates a wheelchair at the school. While he has lost some control in his arms and legs, his hands are still agile.
"I feel terrific," he says. "Not a lot has changed. My arms and legs have gotten a little weaker but everything else is OK. I continue to do my work every day."
Amyotrophic lateral sclerosis strikes the body’s motor neurons. As the neurons shut down one by one, ALS patients lose the ability to control their muscles. No one knows the cause.
The disease is also unpredictable. "For most cases like mine, it’s sporadic. Very healthy people are all the sudden, you know, get a little weakness in a finger or in a leg and then it just develops from there," Cellucci says. For him, "I would be reading the newspaper and I had tremors in my arm."
Cellucci does not focus on the things he cannot do, like driving and playing golf, but rather the things he can, like spending time with his three grandchildren. And he really believes a cure may be near.
"I’m optimistic because I know they’re getting close to significant breakthroughs and that’s why I wanted to help UMass Medical School," he says.
The fundraising effort is aimed at creating a research endowment focusing on ALS and other neurodegenerative diseases. Cellucci sees his part as continuing his long career trajectory. "I was in public service for 35 years — 31 years as an elected official, 4 years as the ambassador to Canada — and I got a lot of satisfaction from helping people and advancing good public policy, decisions and causes," he says.
He hasn’t lost his interest in politics either. He’s with Mitt Romney all the way, even though he supported Rudy Giuliani instead of Romney four years ago. As for one of Romney's rivals, Cellucci says, "I kind of agree with Peggy Noonan: Newt Gingrich is the guy in the room with the hand grenade with the pin out and I just don’t think that’s the person we want to put up as our nominee."
Paul Cellucci is just 64 — and he has a matter-of-fact determination that despite his disease — he’s got a lot of living left to do.