Ruth Hagestuen, Chairperson of Health Professionals Special Interest Group of the Movement Disorders Society
Ruth Hagestuen started preparing for her place in the Parkinson’s professional community when she was a nurse working overseas in Bangladesh and Madagascar. “I gained a different and more global perspective from my time there. I can see the value of different viewpoints and learned to think outside the box,” Ruth explained. This has served her well. Today she works part time at Struthers Parkinson’s Center as the Community Relations Partner, she is Chairperson of Health Professionals Special Interest Group of the Movement Disorders Society and she works with special programs for the National Parkinson Foundation. International travel is still part of her life today. This year, Ruth is speaking at conferences in places like Australia, the Netherlands and Canada.
After her time in Bangladesh, Ruth returned to the US and enrolled in a Masters of Theology program at Wartburg Seminary to reflect upon her global experience. Her interest in clinical care counseling led to an assignment at Methodist Hospital. When asked the lead a Parkinson’s support group, Ruth said yes and asked to follow a patient through their full day of assessment session. “I needed to understand what Parkinson’s disease (PD) was about and how I could better support a person who is told they have PD,” said Ruth. Six months later she jumped at the chance to coordinate the PD clinic at Methodist Hospital. “I knew the position was a good fit when I started to work with PD patients.”
The job as nurse coordinator in the PD clinic at Methodist Hospital led her to a position Program Director at Struthers Parkinson’s Center. Then she moved to the National Parkinson Foundation as VP of Programs where she worked with Parkinson’s groups and PD Centers of Excellence around the country. Now she promotes inter-professional care for people who have PD locally, nationally and internationally through her work with the Struthers Parkinson’s Center, the National Parkinson and the Movement Disorders Society.
Ruth has been working on two key projects at Struthers. For one project she interviewed 42 care partners whose loved one died in the past two years to see how they viewed their experience with end-of-life-care.
The other project is to establish a care network between the Struthers Parkinson’s Center, a Center of Excellence of the National Parkinson Foundation, and residential care facilities.
“When a PD patient moves into a residential facility, they often lose contact with their neurologist and other PD professionals that they have worked with. We work with the care facility to identify PD champions to lead the program and train all the staff on how to better care for people with PD,” explained Ruth.
The program started with six facilities in 2012 and Struthers will add another six facilities in 2013.
Ruth said: “We have learned a lot and have been delighted that the program has been more successful than expected. We are now better able to recommend facilities to PD families, and to work with interested facilities so people whose lives are affected by PD can get the best care possible.”
“I am also very interested in promoting team care where a multidisciplinary team of medical professionals work together to help a person with PD and his/her family. This is a different medical model than what is typically done in the US healthcare system today. Some countries, like the Scandinavian countries and Canada, have a health system that is much more conducive to implementing team approach,” Ruth explained.
Ruth loves her work.
“It allows me to create new program options and new ways of delivering care to people with PD. I work to establish programs and I make sure they will continue over time.” Ruth’s program development skills have been applied globally, but she still sees the importance of the individual. Ruth concluded, “You need to listen to where each person is at and to be present with them. Everyone is different and you need to help the person you are sitting with live as fully as possible.”
Story written by Susan Gangsei, author of The Light in the Middle of the Tunnel – Harrowing but Hopeful Stories of Parkinson’s Family Caregivers.
“People with PD need to see a neurologist that specializes in PD. There has been so much change in the field since I started. We now know that Lewy Body is not as rare as what was assumed. Medication options continue to change. Everyone with PD is different. They have different symptoms and need a different combination of medications. There can be non-motor symptoms that need to be addressed such as mood, memory, constipation, sleep issues, etc. Each PD patient is a unique puzzle and I try to make all the pieces fit together as best I can.” Dr. Stein said.
Living well with PD is much more than medication, and the person with PD and their care partner are the decision makers. We need to provide the right information at the right time based on what the patient and care partner tell us are their goals and what needs they have. Those things are different for everyone.
"People with Parkinson's disease first need a timely diagnosis and an understanding of what Parkinson's is, and what it isn't." Martha