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Wendy Conner used to sit in staff meetings desperately trying to keep her legs from twitching. She crossed her ankles, used pressure to stick her feet to the ground, most of the time to no avail.

When she was finally diagnosed with Huntington’s disease at age 52, she learned that involuntary movements would be the least of her concerns.

“The hardest thing is facing the emotional roller coaster of Huntington,” said Conner, now 56, a retired accountant and resident of Gates, North Carolina, who is a patient at the Huntington clinic at UVA Health since 2017. “Thoughts are amplified and stuck in your head. You are agitated by them, but you can’t get them out. It’s like you have to change channels, but you can’t simply not.

Jessie Gibson, a University of Virginia nurse scientist who spent the beginning of her career caring for Huntington’s disease patients, has often heard a similar refrain. She is now studying the disease.

“Personality changes, anxiety, cognitive changes,” said Gibson, assistant professor in the School of Nursing. “These invisible symptoms caused my patients more distress than the physical symptoms we could see.”

Gibson had originally planned to study Alzheimer’s disease – she had seen her grandfather struggle – but was intrigued when a fellow doctor pointed out the lack of research on Huntington’s disease and asked, “Did you ever met someone with Huntington’s disease? She hadn’t.

Once she started seeing patients at the Huntington Clinic, the urgency became evident.

“I saw patients who often moved a lot in their seats, and I was not aware of it,” Gibson recalls, “and saw what their family members see, including the changes in mood and personality – the full picture of all these different symptoms. Hearing the stories of my patients and their families, and how few outside the world of Huntington understood what they were going through, made me passionate about it. improvement of their quality of life.

Huntington’s disease – sometimes described as a mixture of Alzheimer’s, Parkinson’s, and amyotrophic lateral sclerosis (Lou Gehrig’s disease) – is a distinct genetic disorder due to its onset in the early years of adulthood (usually between 40 and 50 years) and its consequent duration of 10 to 25 years.

“People live long after diagnosis,” Gibson said. “With Huntington’s, you’re here for the long haul.”

Huntington’s disease causes progressive degeneration of nerve cells in the brain. Patients who inherit it experience physical changes, such as chorea (involuntary jerks or contortions), difficulty walking, balancing, swallowing and speaking, as well as less obvious but equally upsetting psychological symptoms: personality changes, emotional instability and impaired ability to reason. There is no cure.

Almost three-quarters of Huntington’s patients report anxiety and many suffer from depression. And because most live decades after diagnosis, unmanaged psychological symptoms often lead to a deterioration in the quality of their lives.

Gibson focuses on these mental health symptoms in his work. With the support of the National Institutes of Health, UVA ITHRIV scholarship program and one 3Riders Gibson and psychology professor Bethany Teachman will explore these patients’ propensity for ‘interpretive bias’ and test the effectiveness of Teachman’s online brain training tool, MindTrails (which Teachman developed in collaboration with Alexandra Werntz Czywczynski, Post-Doctoral Research Associate), which aims to break negative thought patterns. Partnering with Gibson and Teachman for the 3Cavaliers Award, Dr. Madaline Harrison, professor of neurology and director of the Huntington’s Disease Clinic at AVU, will help recruit participants for the study.

First, Gibson will test the validity of an interpretive bias scale she developed on 120 Huntington’s disease patients to see if it accurately captures their negative thoughts. Next, she will select 20 Huntington’s patients to participate in a five-week MindTrails intervention and, afterwards, interview them to find out if the tool has reduced their negative thoughts and improved their well-being.

Gibson predicts that the online tool – which has already been shown to reduce anxiety in the general population – will prove particularly relevant for Huntington’s patients, given that many can no longer drive (which creates barrier to in-person therapy) and are interested in non-pharmacological products. relief methods. For Teachman, the potential benefits of MindTrails for Huntington’s patients provide a way to expand mental health access and support.

“We’re always eager to think about how changing negative interpretive biases can help improve the emotional health of various populations,” Teachman said. “Jessie’s recognition that interpretations of anxious threats are widespread, but poorly handled in Huntington’s patients, has opened up an exciting new partnership between nursing and psychology that we hope can improve health outcomes. access to clinical care. “

Conner – who gave Gibson a crucial perspective in developing the new rating scale – is eager to begin the research.

“It’s so hard to get out of this negativity, this automatic feeling that things are going wrong,” she said. “It will be great for Huntington’s patients to give it a try, especially since so many of us are trying to maintain our well-being. It is so important.

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