Through Social Work, Miller Aims to Help Those in Need

Wednesday, June 05, 2013

Amanda Miller

The following is an extended version of an article appearing in thePDF iconHDHindSightSpring_2013.pdf.

Amanda Miller has always had a bit of a soft spot for the underdog; as she puts it, those who could use a boost somewhere along the way in their lives. That desire to advocate for people and empower them is in part what led the Eagle Grove native to where she is today, as the UI HDSA COE’s new social worker.

“I feel like there’s a responsibility within our society to help take care of each other, and I’m comfortable doing that and enjoy doing that,” Miller said. “I’m lucky I get to spend every day doing something that I’m passionate about.”

It took Miller a change in majors five times (criminal justice, sports medicine, physical therapy, occupational therapy and physiology) as an undergraduate at Iowa Central Community College and the UI and to get to social work. Her first social work professor at the UI, Sara Sanders, had a major impact and her influence solidified her career path.

On the job since December 2012, Miller provides social work services for patients in the HD Clinic as well as for research participants. She also helps HD families who contact the UI HDSA COE needing help or guidance on a particular topic. And she’s directly involved in research as the coordinator for the Juvenile Huntington disease Natural History Study. While she’s taken on a number of different duties, Miller says her top priority will always be as a helpful resource for people living with HD, caregivers and other HD family members.

“Whether it’s emotional support, connecting them with services or helping them understand what the next step should be,” Miller said. “I’m here to provide that for them.” Before working at the UI HDSA COE, Miller had a personal connection to HD through her good friend Brittney Robinson, who is the HDSA Iowa Chapter’s Vice President and whose father Michael died from HD.

“She really helped me understand the disease,” Miller said, “and while the disease is rare, it’s so massive in the lives of the people who are affected by it.”

Miller, who holds a bachelor’s from the UI and master’s from the University of Northern Iowa in social work, previously worked as a program manager for the Alzheimer’s Association East Central Iowa Chapter. She notes similarities between the two neurodegenerative diseases, such as the daily struggle for people living with the disease and their caregivers, the frustration over a lack of effective treatment and the types of services that are needed for people with the disease.

She has also noted that similar to those in families affected by Alzheimer disease, there is hope displayed by those in HD families for future advances in treatment and, someday, hope for a generation that doesn’t have to endure the havoc the disease can wreak. “I find myself almost surprised at the positive outlook that people living with the disease have,” Miller said. “I’ll meet someone in the early-to-mid stages of the disease and the attitude they carry and the general spirit they have is powerful.”

Miller says she is excited to be directly involved in research, which will be a new experience for her. She says there is a lot of work to be done regarding research of Juvenile Huntington disease (JHD), which is often misdiagnosed or inadequately treated by physicians who may be unfamiliar with the disease. Additionally, there are much fewer children diagnosed with JHD than the adult version of the disease, which means researchers must find ways to reach timely conclusions about JHD with a smaller number of research participants.

Additionally, Miller is interested in HD end-of-life issues, an area of study where much is left to be learned about peoples’ experience with the end stages of HD.

After practicing health care social work as an undergraduate at the UI, Miller was eager to get back into the health care field. She has an appreciation for the team mindset that occurs amongst the neurologists, psychiatrists, neuropsychologists, genetic counselors and researchers. Her role as the social worker is to help bring it all together for the HD patient.

“The UI HDSA COE is made up of incredibly passionate, incredibly knowledgeable people, who without question will do what needs to be done for a person or family affected by HD.”