Expert: Paul Cellucci could live with ALS for years

By Jessica Heslam
Saturday, January 8, 2011 - Updated 3 days ago

Former Bay State Gov. Paul Cellucci, who revealed this week he’s battling Lou Gehrig’s disease, has a tough road ahead but could live with the debilitating disease for years to come, one leading expert said yesterday.

“The average age of survival after diagnosis is two to three years. If you get good quality clinical care, which we’re blessed with here in Massachusetts, the average survival time is probably longer,” said Dr. Steven Perrin, CEO and chief scientific officer of the ALS Therapy Development Institute in Cambridge.

“It’s probably more like four to five years. . . It goes to the extreme. We’ve seen patients surviving 10 or 15 years with the disease. We don’t understand why the progression rate differs from individual to individual. A lot of it is genetic background,” Perrin added.

ellucci, a 62-year-old grandfather and former U.S. ambassador to Canada, said in a statement that he’s had symptoms of amyotrophic lateral sclerosis for four years. The Herald reported yesterday that the Hudson native began confiding in close friends this week as his incurable condition worsened.

Cellucci went public Thursday, sparking well wishes from countless old friends, political allies, reporters who covered him at the State House as well as people he campaigned for, said Rob Gray, his former campaign manager.

“It was quite an outpouring,” Gray said yesterday.

While there is no cure for the disease, Perrin lauded the Bay State doctor treating Cellucci, Dr. Robert H. Brown Jr., and said he heads one of the best ALS clinics in the country. Perrin called Brown a “very, very experienced” neurologist who has an “unbelievable” bedside manner.

Brown, chairman of Neurology at the University of Massachusetts Medical School and UMass Memorial Medical Center, is declining interviews, citing Cellucci’s privacy. Cellucci declined comment yesterday.

The Massachusetts chapter of the ALS Association said in a statement it was “saddened” to learn of Cellucci’s diagnosis, saying the disease “takes a terrible toll on patients and their loved ones.”

“The entire ALS Association family is thinking of the governor and his loved ones right now, and the association as a whole is here to be a resource and offer support for Paul Cellucci and all those affected by ALS,” said Jen Natoli, spokeswoman for the nonprofit organization.

A Cellucci friend said the former governor plans to become as supportive of the local ALS community and organizations as he can be over the next few years and he appreciates their well wishes.

Dave Wedge contributed to this