In the Huntington’s Disease community, Family is Everything. That philosophy runs right in course with our focus on family in our building. Each child of a parent with HD has a 50/50 chance of getting the disease and the decision to get tested is a very personal one. Those who experience Huntington’s Disease, whether it be via their own or a family member’s diagnosis, work through many emotions, including sadness, anger, guilt and anxiety of the unknown. Byron knows that the only way to combat these feelings and emotions is to have hope.
Hope for a cure, hope in a support system and hope that the uninformed are understanding.
Therefore, we work closely with the Indiana University Huntington’s Disease Center of Excellence to provide specialized resources to our team members. Byron staff provide care and opportunities while still realizing the unique physical and emotional sides of the disease. Training is the key to successfully caring for the complex needs of this unique population. Our partnership with Indiana University helps to continually educate our staff, ensuring they are providing exceptional care. This training begins with hiring practices to ensure the best employees are selected. Through a multi-disciplinary approach to training, team members learn about the physiology of the disease and how to proactively manage behaviors which may arise. Because the onset of HD usually happens at a younger age, fitting in at a long term care community may be difficult. Having an overall younger population adds to the ease of acceptance and encourages specific opportunities to fit in at our community easier. We host a monthly HD support group in partnership with HDSA which is moderated by faculty and staff from the University of Saint Francis. As a community, we also support and participate in several different events that raise funds and awareness about HD including walks, bowling, concerts and other experiences.
For more resources related to HD, see www.hdsa.org and you can read up via fictional, but accurate, books such as Inside the O’Brien’s by Lisa Genova and Rules for 50/50 Chances by Kate McGovern.