Wendy Conner used to sit in staff meetings desperately trying to keep her legs from twitching.
When she was diagnosed with Huntington’s disease at age 52, it became clear that involuntary movements might prove the least of her worries.
“The most difficult thing is dealing with the emotional roller coaster of Huntington’s,” explained Conner, now 56, a retired accountant, and resident of Gates, N.C. “Thoughts get magnified and stuck in your head. You’re agitated by them but can’t get them out. It’s like you need to change the channel, but just can’t.”
Nurse scientist Jessie Gibson, who spent her early nursing career caring for patients with Huntington’s, heard similar refrains.
“The personality changes, the anxiety, the cognitive changes,” said Gibson, an assistant professor, “these invisible symptoms caused my patients more distress than the physical ones we could see.”
“The personality changes, the anxiety, the cognitive changes, these invisible symptoms caused my patients more distress than the physical ones we could see.”Jessie Sellers Gibson, assistant professor, a nurse scientist who studies Huntington's disease
Huntington’s disease, a genetic disorder for which there is no cure, is typically diagnosed in early middle age and causes a progressive degeneration of nerve cells in the brain. Patients experience physical changes, like chorea (involuntary jerking or writhing), difficulty walking, balancing, swallowing, and speaking, as well as less obvious but equally vexing psychological symptoms: personality changes, emotional instability, and impaired reasoning.
Nearly three-quarters of Huntington’s patients report anxiety, and many have depression. And because most live decades beyond their diagnoses, unmanaged psychological symptoms often wreak havoc on the quality of their lives.
That space is now the focus of Gibson’s work. With funding from iTHRIV Scholars and 3Cavaliers grant, Gibson will explore these patients’ propensity for “interpretation bias”—the tendency to see people or situations in a negative light—and test the efficacy of an online brain training tool called MindTrails that teaches people to break negative thinking patterns. Partnering with Gibson is MindTrails’ creator Bethany Teachman, a psychology professor, and Madaline Harrison, a neurology professor and director of UVA’s Huntington’s disease clinic.
First, Gibson will test a new interpretation bias scale on 120 patients with Huntington’s disease to see if it accurately captures their negative thinking. Then she’ll select 20 Huntington’s patients to use MindTrails for five weeks and, afterwards, interview them about whether it reduced negative thinking and improved well-being.
Gibson’s hunch is that the online tool—already shown to reduce anxiety in the general population—will prove relevant to Huntington’s patients, given that many are no longer able to drive, are interested in non-pharmacologic methods of relief (given the paucity of understanding of the interplay between Huntington’s drugs and other psychotropic medications), and often live for decades beyond their clinical diagnoses.
“These patients are in it for the long haul,” said Gibson, “and there’s much we can do to help.”