A Huntington’s story
Date: July 15, 2011
Follow your mother into the supermarket. See if you notice anything unusual. Maureen Collins felt wary about her father’s request but complied. She found her mom standing in the soup aisle, staring straight ahead. The moment passed, but Collins began to see a pattern in the spells and what followed: two fenderbenders because her mother could no longer drive defensively; a broken hip when balance went awry; behavior changes even more subtle.
Even before the testing, Collins felt sure that, like a cousin in the family, her mother had Huntington’s disease. Collins brought her mom to Hopkins for gene analysis. She herself joined a clinical trial that included the test—a terrifying step, Collins says, “but one I felt obligated to take for the sake of my three adult children.” As suspected, her mother was positive. But Collins was not.
And so began more than a decade of challenges for Maureen Collins and her husband, George, underscoring Huntington’s as very much The Family Disease.
Hopkins became the Collins’ medical base. But George’s duties as a corporate captain and world-class sailor—Google him under the Whitbread races—often divided them between other homes in Florida and Connecticut. That meant care for the mother, now living with them, was spread out. “We came to depend on Adam Rosenblatt (article, left) as our advisor and advocate through some tough situations,” says Maureen Collins.
The need for that hit home when Collins’ mother began telling “little fabrications.” Early dementia and loss of inhibition in an articulate woman were an unhappy mix. “My mother had people believing terrible things about our family,” says Collins. When Rosenblatt suggested a new medication and reduced others she’d been taking, “it turned my mother around,” Collins says.
Collins’ mother lived to be 87. Today George and Maureen Collins remain effective, committed advocates for better Huntington’s care and research.