Interdisciplinary Care Offers Help for People Living with Huntington’s

When Tracey Vajay, 45, was diagnosed with Huntington’s disease five years ago, she was not completely surprised. Vajay grew up watching her father, who started showing signs of the condition at the same age, develop involuntary movements known as chorea, as well as problems with mood and memory.

These symptoms progressed until he died from the condition at the age of 50. Because Huntington’s is an inherited condition, Vajay had had a 50 percent chance of inheriting it. 

“I saw my father struggle with the same symptoms that I’m dealing with now. I always knew there was the possibility that I would be in his shoes, but I hoped it wouldn’t the case,” Vajay said 

There are no disease-modifying therapies for Huntington’s disease. However, since the death of Vajay’s father, locations like the Duke Movement Disorders Clinic have developed a wealth of new resources and options to improve the lives of people living with Huntington’s. 

At the Movement Disorders Clinic, a recognized Center of Excellence from the Huntington’s Disease Society of America (HDSA), Vajay and other Huntington’s patients meet regularly with neurologist Burton Scott, MD, PhD, as well as a team of experts specifically trained to help people with Huntington’s disease. 

Scott is able to monitor the Vajay’s condition over time,  provide her information about what to expect from Huntington’s disease, and help manage physical and psychological symptoms. Social workers help Huntington’s patients find financial support, support groups, and other resources, and change their routine to improve their ability and function and quality of life. Occupational, speech, and physical therapists work with Vajay and other Huntington’s patients to preserve their ability to speak, move, and talk. Our clinical pharmacist can help patients make sure they receive any medications they need. 

“It takes a village to help people with Huntington’s disease,” Scott says. “Their needs, and the needs of their families are many, and they change over time.”  

Vajay has left her job as a bank underwriter, but lives an active lifestyle, working with her husband Jeff to maintain her household and raise her two children.  

“All the things I used to do before I was diagnosed with Huntington’s are different, but I manage, Vajay said.  “My memory isn’t what it was, so I write down everything I have to do during the day and timers so I don’t leave anything burning on the stove. My voice isn’t as strong either, but I’ve learned how to speak more loudly and clearly. I’ve also learned how to give myself grace and delegate some of the things Jeff can do better.”  

"Living with Huntington’s a battle, but it’s one I’m willing to take for my family," Vajay said. 

Each human brain contains between three and five billion astrocytes. These star-shaped support cells help build and maintain connections between the neurons that allow us to think, feel, and move, but have been relegated to a secondary role in research for Parkinson’s and other neurodegenerative diseases. 

 The Stars in Our Brains

Cagla Eroglu, PhD, Vice Chair of Research and Professor of Cell Biology and Neurobiology, wants to change that dynamic. Her cutting-edge research has found that astrocytes play a critical role in helping neurons build connections with each other and may be key to preventing and treating Parkinson’s and other neurodegenerative diseases. 

“Everybody had been fixated like a magnet on the idea that the problem is the neuron that's dying,” said Nicole Calakos, MD, PhD, of Eroglu’s research. “Cagla said, ‘Hey, let's think outside of the box of that dead cell. Let’s consider whether astrocytes are like the soil around a plant, providing the nutrition, and allowing it to form roots, and maybe that is what’s broken.’ Why aren't we even thinking about this critical piece of the brain?” 

Eroglu believes that by learning more about how astrocytes support connections between neurons and overall health within the brain may lead to therapies that slow or stop Parkinson’s and other neurodegenerative diseases. 

“I strongly believe that there will be ways to stop neurodegeneration,” Eroglu said. “We will find a way to strengthen the brain connections. If we can figure out the weakest link, then we could concentrate on solving that.”