By Rick Karlin:
June 27, 2017
Former Hudson Valley Congressman and Assemblyman Maurice Hinchey, a Democrat who spearheaded efforts to remove PCBs from the Hudson River, is suffering from a rare terminal neurological disorder that is robbing him of the ability to speak and causing Parkinson’s-like symptoms, his family said on Tuesday.
“He’s not a person to ask, ‘Why me? Why me?’" said Hinchey’s wife, Ilene Marder Hinchey.
The illness, known as frontotemporal degeneration, began to manifest after Hinchey overcame colon cancer almost five years ago.
Marder Hinchey said their family decided to go public due to inquiries they have been getting from former associates as well as congressional staffers, many of whom remained in Washington, D.C.
“Barely a week goes by in Congress where one of his former staff members is approached’’ by colleagues and friends asking how he has been, she said. "We felt this was a private matter but so many people have been calling."
Hinchey’s vital signs remain strong and he appears relatively healthy, but the illness is slowly erasing his ability to speak and move easily, Marder Hinchey said.
She said their decision to publicly disclose Hinchey's condition also made sense given the attempts to repeal Obamacare and replace it with a plan that would put sharp limits on Medicaid spending.
“People who get this generally wind up on Medicaid or in a nursing home,” Marder Hinchey said.
She’s also helping to raise awareness of the illness, which is little known and often misdiagnosed as Parkinson’s disease, Alzheimer’s or a personality disorder. There is presently no known cure or treatment to slow or stop the progression of the fatal disease that's estimated to affect 55,000 Americans.
People can find out more about FTD at https://www.theaftd.org/learnmore.
One of Hinchey’s political proteges, Democratic Assemblyman Kevin Cahill of Kingston, praised the decision to go public about the illness, especially if it raises awareness.
“Maurice Hinchey is demonstrating the kind of selfless leadership that has inspired many and made him a hero to his friends, colleagues and constituents,” Cahill said. “I wish him continued happiness, peace, comfort and good health.”
"He was a champion for open space, a champion, really a pioneer in legislation relating to hazardous substances and waste," said Long Island Democratic Assemblyman Steve Englebright who heads the Environmental Conservation Committee.
When in the Assembly, Englebright said, Hinchey helped oversee the state Department of Environmental Conservation's transformation from an agency focusing mainly on fish and game to one with a broader mandate including protection of human health.
Hinchey, 78, was elected to the Assembly in 1975 and served until 1992.
He was elected to Congress in what was the 22nd District, which snaked through the Hudson Valley and Catskills to Binghamton and Ithaca.
A steadfast progressive, Hinchey was one of the first in Congress to oppose the war in Iraq.
He is well known to activists who credit him with helping to make the Hudson Valley a cradle of the national environmental movement in the 1970s. He worked to get the valley designated as an Historic Heritage Area.
"His passions were in the environmental issues in New York state, the Catskills and the Hudson Valley,'' said Ramsay Adams, founding director of the Catskill Mountainkeeper, which works to protect the region's natural heritage.
"He was a really important part of all of that,'' Adams.
Hinchey was born in New York City and grew up in Saugerties, where he still lives.
Hinchey re-married Marder Hinchey, a publicist, in 2013 -- they had been married before. In the interim, Hinchey was married to lobbyist Allison Lee.
He worked his way through college as a Thruway toll taker and refused by buy an E-Z Pass since it was eliminating those jobs.
To this day, Marder Hinchey said, toll takers still occasionally recognize her and they ask about her husband.
She says he remains upbeat and happy despite his health challenges.
"He wakes up everyday with a smile. He loves being here with us in a house we built in the woods," she said.