What if the behavior that broke your heart was actually the brain asking for help?
In this episode Rayna sat down with author and advocate Lori Jones to explore the hidden contours of Huntington’s disease, where genetics, uncertainty, and everyday Caregiving collide and uncover the small, human choices that change everything.
Lori grew up in an HD Family, later becoming a legal guardian for her father through care homes, hospital handoffs, and Hospice. She opens up about the emotional math of pre-symptomatic testing, the weight of a 50% genetic risk, and why learning about CAG repeats and symptom variability can bring Clarity without stealing hope. We also trace powerful parallels with Alzheimer’s: early psychiatric shifts that go unnoticed, late diagnoses that miss the window for treatment, and the hard truth that behavior often reflects brain change, not character.
The heart of this conversation lives in the stories. A care home director who said we get creative and meant it. A third-shift art student sketching while Lori’s dad savored ice cream, reconnecting with the artist he once was. A retired neurology chair arriving with a paper bag of fries, earning trust one salty bite at a time and clearing a path for much-needed meds. These aren’t grand gestures; they’re precise mercies that honor personhood and make care sustainable.
Lori also names the quiet undertow of relief: survivor’s guilt after testing gene negative. Her way through was service- organizing Team Hope fundraisers, writing Spared: A Memoir of Risk and Resolve, and speaking anywhere to help caregivers find language and community. If you’ve ever felt isolated, triggered, or unsure how to de-escalate fear-driven moments, you’ll leave with practical tools, compassionate reframes, and a reminder that you’re not supposed to carry this alone.
Listen now, share this with someone who needs it, and tell us: what small act made a big difference in your caregiving? If this conversation helped, subscribe, leave a review, and pass it on so more caregivers can find hope and practical support.
