Over the past several months, I have had the privilege of supporting many individuals and families affected by Huntington’s disease (HD) from outside North Carolina. While HD Reach was founded in North Carolina, our mission extends far beyond state borders. We are committed to serving and supporting anyone impacted by HD, regardless of where they live.
Recently, I was contacted by a woman in Alabama who was deeply concerned about her father, who had recently relocated to North Carolina. Both she and her father are gene-positive for HD, and she was struggling to identify resources and support services in her father’s new state. Living hundreds of miles away, she faced numerous challenges while trying to coordinate care and advocate for her father from a distance.
Over the course of several weeks, we built a strong working relationship and developed a plan to support both her and her father. Living with HD—and caring for a loved one with HD—can be overwhelming, stressful, and emotionally exhausting. Together, we focused on identifying resources and solutions that would address her immediate concerns while helping her prepare for future needs.
Her father had recently moved from Connecticut to North Carolina and was living with extended family members who had become his primary caregivers. She shared concerns about increasing behavioral changes, including aggression, as well as a decline in his cognitive functioning. Through collaboration with the Duke Center of Excellence team, we were able to help connect her father with the mental health support he needed to achieve greater stability and improve his quality of life.
In addition, we identified in-home caregiving resources and practical tools to help his family provide the best possible care. We discussed safety concerns and crisis planning, ensuring that both her father and his caregivers had strategies in place to remain safe and supported at home. Developing a comprehensive safety plan brought significant peace of mind and helped alleviate much of the stress and worry she had been carrying.
As time went on, she began exploring whether her father might require a higher level of care, including placement in a long-term care facility. Given the progression of his cognitive symptoms, she also had questions about guardianship. I was able to provide guidance and resources specific to North Carolina, helping her better understand both the placement and guardianship processes. As her father's disease progresses, HD Reach will continue to support her in navigating these complex decisions and accessing the services he may need.
