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Monday, June 10, 2024

Capital Region Gives Back: Mike McNary, Board Member of the Huntington’s Disease Society of America’s Albany Chapter

McNary lost his wife to the degenerative disease and now his 28-year-old daughter has begun experiencing symptoms.

This story is part of a larger feature on 10 do-gooders from Saratoga and the rest of the Capital Region. To meet the other nine honorees and purchase tickets for annual fundraising event, visit our Capital Region Gives Back event page.

In 1996, Mike and Teresa McNary, a young and healthy couple with two children, got a call that would change their lives forever. Teresa’s estranged father, whom she hadn’t seen in 25 years, had died of a disease called Huntington’s. “We started researching what it is,” Mike says, “and said, ‘Oh, crap. This is not good.’”

Huntington’s is an incurable, heredity brain disease that causes a deterioration in a person’s physical, mental and emotional abilities. Symptoms, which have been described as having ALS, Parkinson’s and Alzheimer’s simultaneously, typically begin between the ages of 30 and 50 and worsen over the course of 10 to 25 years until, ultimately, the person dies. If a parent has it, there’s a 50/50 chance his or her child will have it. Teresa got tested, and she had it.

“In 2001, some things started happening to her personality,” Mike says. “She got in some arguments at work and got fired. One of the biggest symptoms was her inability to understand what is right and wrong. Rules didn’t apply to her. We had to take her license away. It was like living with an ornery Alzheimer’s patient that still has the ability to fight and be really tough to deal with because they’re young.”

Caring for Teresa eventually became too much for Mike, and she moved to a Huntington’s-specific nursing home in Lee, MA in 2013. (Most regular nursing homes don’t accept Huntington’s patients because they’re too difficult to care for.) After four and a half years, she passed away, but the nightmare the McNary family had lived through wasn’t over: Both of Mike and Teresa’s children got tested and are positive for the Huntington’s gene.

For the last 10 years or so, Mike has done the only thing he can do: serve on the board of the Huntington’s Disease Society of America’s Albany Chapter. “The mission, obviously, is just like the mission for cancer societies,” he says of the organization. “Find the cure.”

Natalie Moore
Natalie Moore
Natalie Moore is the director of content at Capital Region Living and Saratoga Living.

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