Former Gov. Cellucci On His Political Career And Living With ALS

Former Gov. Paul Cellucci admits that the past three-and-a-half years have been tough. That’s how long he’s been battling ALS, or what's often called Lou Gehrig’s disease. But Cellucci says he has a slow-moving form of the disease and, despite being confined to a wheelchair, he feels OK.

"It's basically confined to my limbs at this point. Everything else is working OK," Cellucci said. "I feel good. I'm very active working out of my home office. I’m having a great time with my grandkids. You know, I’m enjoying life, despite the challenges."

The 64-year-old has spent more than three decades in political life — a long stretch, especially for a moderate Republican in Massachusetts. He served as a state representative for his hometown of Hudson, then state senator, lieutenant governor, governor and U.S. ambassador to Canada.

We met up with Cellucci at UMass Medical School in Worcester, where he's being treated for ALS and where he's helping the fundraising effort to find a cure. He recalled his time in elected office, and talked about his work on the economy and on education reform. And he said of all of the titles he’s held, he’s probably most proud of his time as governor:

Paul Cellucci: Being elected the governor of my home state — I don't think there is anything that can top that, and having worked with [former Gov. William] Weld for six-and-a-half years as his lieutenant governor and being pretty much a principal in that administration.

I think the things I'm most proud of are: one, I think we pretty much put a stake through the old label of "Taxachusetts." And I'm also pretty happy that despite all the controversy, the Big Dig is an engineering marvel — it's transformed the city of Boston and it's improved the traffic flow, particularly going out to Logan Airport.

When you look back, you feel good about those accomplishments that continue to help the people of Massachusetts.

Deborah Becker: Now, when I first met you, I was at a small AM radio station in central Massachusetts and you were a state senator at the time. You've never lost an election — a Republican in predominately Democratic Massachusetts. And I always remember you being very skilled at working with the group and finding a consensus: with Democrats, with Republicans, with everybody. And sometimes when I think of those times, now I wonder if it's almost quaint — do you think that with the current political climate?

Well, particularly in Washington, it has just become too partisan; the extremes are dominating both parties. So I don't think it's as big a problem in the states as it is in Washington. I wish we had more Republicans [in Massachusetts]; it's always good to have some balance.

So what do you think your biggest challenge was then when you look back at your political career?

I think my time in Canada ... clearly the 9/11 attacks were pretty jarring. So we quickly had to come up with a smart border action plan, and we did and implemented it. I worked very hard on that.

And of course now you've got a big personal challenge with Lou Gehrig's disease. How are you feeling?

I feel good. I'm fortunate to have a slow case; I was diagnosed three-and-a-half years ago. Many people with this diagnosis are gone in less than two years. And Dr. Brown, my physician right here at UMass Medical School, says if you start slow you usually stay slow. I don't want to have this diagnosis, but it's better to have a slow case.

For those who don't know what the disease is, how do you describe it to people?

Basically, what happens with ALS is that the motor neurons stop sending the message to the muscles, so the muscles gradually get weaker.

This is a pretty hopeful time, because of the collaborative effort that is taking place here. This has become a research powerhouse; more causes have been identified, more potential therapies are coming in line. There's really realistic hope that we will get a breakthrough and unlock the mystery of ALS and even other neuro-degenerative diseases like Alzheimer's and [multiple sclerosis]. So it's a very promising time.

I decided that I wanted to help support what was happening here at UMass Medical School. So we agreed to head up the Champion Fund. We kicked it off a year ago at Fenway Park. In the first year, we raised over $1.5 million. And what this money means is that when there is a spark in the laboratory, they're going to be able to follow it immediately.

Are you involved in any of the clinical trials, or anything like that?

I'm not, no.

How has the disease affected you?

Basically, it's affected my limbs. Everything else is good, which with this diagnosis is very good. You know, I continue to work; I have a home office now.

Are you optimistic? The prognosis, as you said, isn't good. How do you stay optimistic?

Well the long-term prognosis for this disease is not good. And, you know, 10 percent of people with ALS live for more than 10 years, and I do have a slow case. I don't know what the future holds. I don't know how long I'm going to remain like I am right now — feeling good, being very active, but I hope it's for a long time.

I don't know if there is going to be a breakthrough or a eureka moment in the laboratory that will help me and others with this disease. So I just focus on doing the things I can do, and don't worry about the things I can't. I'm blessed with an amazing family, wonderful friends, a great doctor. I've got UMass Medical School 20 minutes from my house, so I don't have to fight that Boston traffic.

When you get a diagnosis like this and you read about it, you see that some cases go very quickly. But here I am three-and-a-half years later. I wake up every morning and see the sun. I get to play with my grandkids. I get to work with my business projects. You end up having a great appreciation for all those things.