Power Through Perspective

I have been thinking a lot about my Daddy lately. In my second year since his passing, I have had the opportunity to reflect deeply on the care I provided during his journey with Huntington’s Disease. Memories of beautiful vacations come to mind—moments of joy that were hard-won, the result of persistent advocacy and unwavering love. As a caregiver, I often felt as though I was facing an uphill climb. Even the simplest tasks, like accessing medication to manage chorea, became challenges that demanded courage and determination. When Daddy’s chorea worsened, I knew that trying new medication could help improve his quality of life. Yet, I encountered resistance: one doctor was uncomfortable prescribing it, and the HD Specialty Care provider, an APRN, told me they couldn’t advocate to the physician. Undeterred, I insisted, “Then bring me someone in this clinic who does have the credentials to educate. He is dying—he has a DNR and Living Will. We are not saving his life by prescribing this medication; we are only easing his suffering.” My persistence paid off. A doctor agreed to consult with the outside prescribing physician, and eventually, Daddy started the medication. It worked wonderfully, granting him the chance to create more beautiful memories. In that moment, I realized the strength it took to advocate for his needs and face down systemic barriers—not just for him, but for every family fighting similar battles. There were times I doubted myself as a caregiver, but this was not one of them. My Daddy defined his own quality of life, and while I could not control Huntington’s Disease, or the medical system, I could always choose how I responded: with compassion, resolve, and love. As we move into this new year, I urge you to remember that recognizing what you cannot control is not a weakness, but a source of empowerment. When we understand our limits, we can channel our energy into the places where we can make a difference—and in those moments, we are truly powerful.

-Jamie Holloway

Jamie Holloway is a social worker with Help 4 HD. If you are in need of advocacy tools and resources, please reach out to her at Help 4 HD.