For Lee police chief, ex-Pittsfield deputy fire chief, ALS 'takes little by little'
PITTSFIELD — Jeff Roosa and Mike Polidoro excelled at knocking out crime and fire for decades.
Then terminal illness came knocking.
Roosa, the Lee police chief, and Polidoro, a retired Pittsfield deputy fire chief, have joined forces to "arrest and extinguish" Lou Gehrig's disease, which is slowly eating away at nerve cells connecting their brains to their bodies.
It's too late for them, they said, but they aim to push evolving research far enough along to help those next in line.
"We want to stop it. First, slow it down," said Roosa, 45. "Because right now, it's a death sentence."
The men are organizing a fundraiser May 18 at Tanglewood for the disease known medically as amyotrophic lateral sclerosis, or ALS. The highlight of the daylong affair will be a tug of war competition between teams of first responders from around the state.
Their goal is to raise $25,000 for the ALS Therapy Development Institute in Cambridge. People are encouraged to donate to their favorite tug team online ahead of time or in person at the event.
Chelsea Owens, director of events for the nonprofit, said scientists at her organization are studying the link between the disease and first responders. Because Polidoro and Roosa so regularly work with police officers and firefighters diagnosed with ALS, they will help them kick off the new Arrest and Extinguish Program — an ALS fundraising platform for those in law enforcement and fire service.
More often, Owens said, police and fire departments approach the organization separately.
"I think this is the biggest collaboration that we've had between police officers and firefighters," she said.
The men got the idea after visiting former Troy, N.Y., Police Chief John Tedesco, who retired last year, after his own ALS diagnosis.
"People have just been falling into place for us," Roosa said, noting that Tanglewood plans to set up a special tug of war pit for the event.
For the past year, the two have talked regularly about what they're going through. Most people with ALS die within two to five years of diagnosis, and so Polidoro's longevity gives Roosa hope.
"You've had it, what, seven years?" Roosa asked him. "And you're still walking and talking."
Though talking can be tiresome now for Polidoro, 61, whose volume sometimes drops to a whisper.
Polidoro's so-called man cave in his Pittsfield home's lower floor is specially equipped for his needs. An armchair tilts toward the floor, giving him leverage as he stands. A ventilator sits beside the chair, ready to help his diaphragm support his breathing.
Roosa, a Boston Red Sox fan, posed for a photo with Polidoro, a New York Yankees fan. He put his arm around him, grumbling about a nearby rival insignia.
"That's the worst part of having this disease," Roosa said, smiling as he pointed out that Gehrig played for the offending team.
Roosa and Polidoro describe themselves as physical people who had been active in the annual Josh Billings RunAground Triathlon before ALS took hold.
There's irony there, Roosa pointed out. The men exercised and ate all the right foods. Now, "some days it's tough to get your pants on."
"It always happens to healthy people," he said, chuckling and tilting his head to the side. "You gotta laugh at it, though, because what else are you gonna do?"
Luckily, Roosa said, their cases are sporadic, meaning they don't have to worry about their children coming down with it.
"There's an enormous amount of research going on with this disease," Polidoro said.
Roosa said he knew something was wrong after he fell on a treadmill after a period with back pain. When a neurologist told him he had ALS, "I didn't even know what it meant."
That was Sept. 5, 2017, he recalled. He cried while driving away from the doctor's office as he listened to Gov. Charlie Baker make a statement on the radio to name the day for Pete Frates, the former Boston College baseball player with ALS and the force behind the 2014 Ice Bucket Challenge, an online ALS fundraising campaign.
Roosa said he feels it chipping away at his muscle function.
"It takes little by little," he said. "Every day you notice something different."
Some days he wakes up feeling normal, he said, until he lays there and tries to move.
"It just kills your soul," he said. "You watch yourself go; you watch yourself lose function."
"We all have our dark moments when you can't get out of bed," Polidoro agreed.
But then, Roosa said he came to appreciate the life he has — his beautiful family, his role as police chief, his community — and his perspective changed. Even simple things like walking in the woods and having a beer in the backyard have new meaning, he said.
"As bad as we've got it, somebody else has it worse," Roosa said.
"You take each day as a blessing," Polidoro said, noting that he started eating pepperoni again after his diagnosis.
Polidoro began to cough as the conversation wore on. "I can speak for a little bit and I get winded," he said. "I'm having trouble with my breathing now."
Roosa reached for his cane, using its curved end to hook a box of tissues across the room and hand it to Polidoro.
They've both decided not to go the breathing and feeding tube route when the time comes, they said, because they don't want to live that way.
Roosa said he wants to die if he can't eat or talk anymore — not live like "a piece of furniture."
"It's my last bit of control, too, over this disease," he said. "It's not going to make me a prisoner."
People to lean on
When it comes to support, the men said they couldn't ask for anything more than what they've gotten from each other and other first responders in Berkshire County.
"My guys would do anything for me, and your guys would do anything for you," Roosa said.
Polidoro agreed, noting the firefighters who teamed up to re-roof his house last summer.
"That's the kind of brotherhood there is," he said. "They take care of us."
The two talk on the phone a couple of times a week, and they text more often than that. They also meet every other Wednesday for the support group sessions Polidoro started about eight months ago.
"I felt there was a need," he said.
Including them, the group has seen four attendees, he said. But of the other two members, one has since passed away and the other is in a nursing home.
Still, the support group sessions are far from a lonely occasion.
"Mike's whole Italian family comes," Roosa said, smiling.
It helps to have people to compare notes with, they said, and to talk to about new medications.
Polidoro said they both take Radicava, a powerful anti-inflammatory that recently was fast-tracked by the Food and Drug Administration.
"That's what the ports are for," Roosa said, referring to a tube implanted in his chest through which the medication is given.
Roosa also takes part in an experimental treatment trial through Massachusetts General Hospital.
"A — it might help me, and B — they might learn something," he said.
Breathing issues are the most dangerous part of the disease.
"People with ALS usually die of respiratory issues," Polidoro said, encapsulating his diaphragm from both sides with a breathing machine.
The machine moved in and out, bolstering his muscles as they worked to take in and push out air. Automated gasps emanated from the device.
Roosa's illness hasn't progressed enough to require a ventilator, and he watched with wide eyes as Polidoro pressed its buttons and breathed more freely.
As his friend settled his breath, he spread his fingers and legs out in front of him, taking stock of his functions.
"One hand is better than the other," he said, noting that the meat of one hand is "gone."
Deploying the classic "gallows humor" that first responders lean on to cope with the worst, the two joke about everything from spinal taps to brain scans. They even unbuttoned their shirts to show each other medicinal ports in their chest, joking about whose tube was longer.
At one point during the interview, Roosa tossed aside his cane and lovingly wrapped his arm around Polidoro. "You're unreal," Polidoro told him, wiping his eyes as he laughed.
"There's a lot of banter between us," Polidoro said.
He said laughter has been an important medicine.
"Honestly, that's how I've gotten through some of the stuff," he said.
Amanda Drane can be contacted at firstname.lastname@example.org, @amandadrane on Twitter, and 413-496-6296.
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