January 22, 2019

Family faces ALS as a fight, not a fear

Team Walpole joins their brother, and Tim Green, to stop degenerative disease

Joe McIntyre/staff photographer

Tom Walpole, right, spends the afternoon with Team Walpole at his home in Groton Tuesday, from left, Quinlivan Walpole, Cindee Rotunda, her daughter Arienne Rotunda, 7, Nora Moore, Hannah Botsford, Tom’s twin brother John Walpole, and Ellen Walpole.

GROTON — Tom Walpole’s life took a 180 degree turn when he was diagnosed with ALS, commonly known as Lou Gehrig’s disease, on Sept. 26.

“It’s affected my voice, my breathing and just a general weakness,” said the Groton man, 54.

Walpole, a sergeant in the Corrections Department for the Tompkins County Sheriff’s, is on disability pending retirement from the post he’s had for 25 years.

“It was a shock,” he said of the illness diagnosed in September.

“My voice started skipping, like I was going through puberty. Then I started slurring. That’s when I went to the doctor,” Walpole said.

“We were flailing,” said Nora Moore of Groton, Tom’s sister of the initial diagnosis. “We were grasping the concept.”

When he got the ALS punch, his family was right there. Some tears, to be sure, and a serious need to do something productive. But they could laugh too. It became clear — their sense of family is all important.

“It’s just what we do. What we’d do for any one of us,” said Tom Walpole.

Relatives gathered with Walpole on Dec. 11 at his farm, all members of Team Walpole, a fundraising group raising money to treat or cure the disease.

“They have a plan of action to combat it. We took it head on and will take on the fight,” said Tom Walpole.

“We were hoping we were wrong,” said John, Tom’s twin brother, also of Groton.

Team Walpole joins Tim Green

Amyotrophic lateral sclerosis is a progressive neurodegenerative disease that affects nerve cells in the brain and spinal chord, according to the ALS Association. It weakens the muscles.

People with ALS may lose the ability to speak, eat, move and breathe. There is no cure. Yet.

According to The Healey Center for ALS at Massachusetts General, 30,000 people in the United States have ALS and 500,000 have it worldwide.

One of those people is Tim Green, of Skaneateles, a lawyer, author and former professional football player. He announced in November he has ALS and started Tim Green’s Tackle ALS non-profit fundraising campaign.

In one month, Tackle ALS has raised more than $1.4 million for the Healey Center for ALS at Massachusetts General.

Moore and Hannah Botsford, Tom Walpole’s niece, set up the Team Walpole fundraising arm for the Healey Center for ALS.

Team Walpole is one of 79 teams on Tim Green’s Tackle ALS non profit fundraising campaign. They’ve raised more than $8,000, Botsford said. The campaign continues until there’s a cure. “We’re not quitting,” said Tom Walpole.

Team goes beyond family

Capt. Ray Bunce at the Tompkins County Sheriff’s Department has known Walpole his entire 24-year career.

“He’s a genuine, good person,” Bunce said. “A great guy.”

The Tompkins County Sheriff’s Department’s Office Family donated $740 for Team Walpole.

“I think it’s great, absolutely,” Bunce said. “There was a minimum of $20. Some donated more. It’s definitely a good fundraiser,” he said.

Walpole has been getting treatment at the Syracuse VA Hospital.

“They have been excellent,” said Walpole of the Syracuse VA. “We are all very impressed with them.”

“There’s no cure but infusions will slow the progress of the disease,” said Botsford.

Walpole takes medication every day.

“I have infusions, 14 days on. Fourteen days off. I just got done with the first 14-day run,” he said.

Still laughing

Family members say the mantra is, ‘Don’t be sorry. Let’s find a cure — the attitude of Green’s campaign.

The Sean M. Healey and AMG Center for ALS is devoted to therapies for people with ALS. It was started with donations by Sean M. Healey, a former CEO of Affiliated Managers Group, a West Palm Beach, Fla., investment firm. Healey stepped down from his CEO post in the spring after being diagnosed with ALS.

Massachusetts General has cell and gene therapies, antibodies and small molecules that halt the key development of ALS, according to its website.

Walpole, a former firefighter and EMT volunteer at the Groton Fire Department for about 11 years, has seven beef cattle on his farm.

“A gentleman’s farm?”

The room, and Tom, tittered. Walpole a gentleman?

“Yes, yes, that’s what it is,” Tom Wolpole said. His girlfriend, Cindee Rotunda, and family members all laughed.

“Seven beefers and Rocko the dog,” Tom Walpole said.

‘My other half’

“He’s the type of person who always has your back,” said Nora Moore. “Not one of those yo-yo people that you don’t know where they stand.”

Ellen Walpole, niece and goddaughter of Tom, (which got the rest of the family fluttering over that description, special dibs being the “goddaughter”), said her uncle moved her back and forth to Rochester. And he’s never missed an important family milestone.

There were those adventures in the garden with the rototiller, but nephew Quinlivan Walpole declined to give details. This family is like that.

“He’s my other half,” said identical twin, John Walpole.”We’re a pain in each other’s asses.”

Tom Walpole said veterans are getting diagnosed with ALS at a higher rate. He was a correction officer in the U.S. Army from 1983 to 1992.

“They don’t know why,” said John Walpole. That’s all branches, and it doesn’t matter where you served.

“It was bootcamp,” said Tom Walpole. “All that shouting.”

Wishes and fortunes

ALS means Walpole can’t do some things. His muscles just don’t allow it, anymore.

“I wish I could walk and go hunting. I can’t walk in the deep snow,” he said.

His speech has been a challenge, he said, but he hasn’t been in any pain. And if he faces a fight, he also has hope and a family behind him.

“I am fortunate I can live independently,” Walpole said. “I am still driving. I still have my motor skills.

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