BOSTON (CBS) – Paul Cellucci calls it a “tough” diagnosis, but that would be an understatement.
The former Massachusetts governor was diagnosed three years ago with amyotrophic lateral sclerosis, or ALS, also known as Lou Gehrig’s disease.
“When you first hear it, you’re in pretty good shape, so it’s a little hard to believe,” he told WBZ-TV.
The first symptoms appeared after he resigned as U.S. ambassador to Canada.
“I’d be reading the newspaper and my arms would tremble a little bit,” said Cellucci.
He says his is a “slow case” and he’s determined to remain as active as possible, despite losing mobility in his arms and legs that keeps him in a power wheelchair.
“When you get to the point like I am where your arms and legs are weak, you focus on the things you can do rather than think about things you can’t do,” said Cellucci.
His mind is as sharp as when he governed Massachusetts, and he uses three decades of political clout now to raise money for ALS research at UMass Medical School in Worcester, at the forefront of trying to find a cure.
“I see it as a continuation of my public service,” said Cellucci.
He kicked off the Champion Fund at Fenway Park last year to raise $10 million.
He also reunited back in March with his old political partner William Weld to raise awareness of the fund, a night that drew Republicans and Democrats to the cause.
He’s also waging his battle with his physician, renowned ALS researcher Dr. Robert Brown.
And in an ironic twist of fate, it was legislation he signed back in 1997 that created the research complex at UMass where his hope lies for an eventual cure. Progress is already being made, according to UMass Chancellor, Dr. Michael Collins.
“What we know is the path we have taken has lead to some important early discoveries,” Collins said.
Cellucci hopes he can benefit himself from the research, but his focus is on raising the necessary dollars for a medical breakthrough.
“They’re getting close. I’m happy to be helping,” said Cellucci.
It keeps him positive in the face of a dire prognosis.
Cellucci never lost an election in 31 years, and is fighting not to lose this time.
“I’m going strong, I’m keeping active, and I’m very happy about that,” said Cellucci.