Planning for HD chorea
can help you preserve
your independence
Eva r.
Care partner to mother
and sisters with HD
Chapter President, Huntington’s
Disease Society of America
– Tennessee Chapter
“It’s hard for me because I’m a fixer, I want to fix things. But this is not my experience, it’s theirs. They’re living their own experience and I really have to be there as support. Sometimes that’s all they need.”
“Long ago, I started writing a book about my life to heal from my childhood trauma. Huntington’s disease (HD) wasn’t part of my story yet—but it soon became the most life changing chapter when my mother and sisters were diagnosed with HD. Becoming their care partner was challenging, but it also taught me how to find the good even in the bad. It led to reconnecting with my mother, learning to set boundaries, and prioritizing self-care.
My mother and I didn’t always get along, but caring for her was the best thing that I could have done. It healed our relationship and I found more hope and strength than I thought I had. I learned to ask for help and lean on support from the HD community to face seemingly impossible challenges.
Two of the best things I learned from the HD community are how to set healthy boundaries and take care of myself. At the beginning, I was overwhelmed and put my own needs on the back burner. But then I learned to take time for myself to practice mindfulness, meditation, and maintain my fitness. Taking care of myself is what helps me be a better support system for my family.
“I realized that as awful as this disease is and the pain it causes, it’s also an opportunity for something positive.”
Now that I’ve learned how to accept support and care for myself, I’m even more eager to support others along their journey. I host an annual golf tournament as a fundraiser and a way of bringing awareness to others outside of the HD community. As this event grows, it’s been an opportunity to share my own experiences so that others can relate and understand HD’s impact.
While my life and my story have gone in a different direction than I originally imagined, I’m still so grateful. I’ve discovered that there’s even more to my story than I thought, and I’ve seen firsthand how my journey can help bring awareness and inspiration to others. My book has not been the path to healing as I originally thought it would be—instead it’s the retelling of how I continue to find strength and healing each day.”