Huntington’s Disease, Family Secrecy, and Caregiving | Lori Jones on Growing Up At Risk

Episode 87 of The Critical Social Worker: A Revolutionary Storytelling Podcast features Lori Jones, author of Spared: A Memoir of Risk and Resolve.Lori joins Professor Ace for a powerful conversation about growing up in a family shaped by Huntington’s disease, living under the weight of secrecy and stigma, facing a 50% genetic risk, and navigating caregiving across generations. This episode explores what it means to live with uncertainty, how neurodegenerative illness affects family systems, why diagnosis matters, and how social workers can better support individuals and families living with complex realities.This is a deeply human conversation about illness, survival, advocacy, storytelling, and the need for more honest dialogue around Huntington’s disease.Subscribe to the channel:https://www.youtube.com/@RevolutionarySocialWork/sub_confirmation=1Visit:https://RevolutionarySocialWork.comEmail Professor Ace to connect or collaborate:[email protected] more about Lori Jones and Spared:Amazon: https://www.amazon.com/Spared-Memoir-Resolve-Lori-Jones-ebook/dp/B0D9HV2L25Spreaker: https://www.spreaker.com/episode/spared-with-lori-jones--66411470YouTube Short: https://youtube.com/shorts/bLbp4JY5UNA?feature=shareFacebook: https://www.facebook.com/lori.jones.568294/LinkedIn: https://www.linkedin.com/in/lori-jones-0a28b013/Instagram: https://www.instagram.com/lorijoneswrites/Threads: https://www.threads.com/@lorijoneswrites?xmt=AQF0xKDpGUbpqlkzsnrSfUnq5RkpQkeTYG2bfaXQb0YtiIkResourcesHuntington's Disease Society of America: https://hdsa.org/Genetic Testing for Huntington's Disease: https://hdsa.org/understanding-hd/genetic-testing/Hope for Huntington's: Clinical Trials and Research https://clinicaltrials.gov/ct2/results?cond=Huntington%27s+disease&term=&cntry=&state=&city=&dist=Storytelling and Support Groups for Huntington's: https://hdsa.org/resources/support-groups/Chapters00:00 Intro and theme01:25 Introduction to Huntington’s Disease and Personal Background04:12 Understanding Huntington’s Disease07:22 Personal Experiences with Family and Illness10:22 The Impact of Secrecy on Family Dynamics13:26 Navigating Diagnosis and Care16:24 The Role of Social Workers and Support Systems19:18 Hope and Advances in Huntington’s Disease Research29:35 Becoming Guardians: A Journey of Responsibility31:42 Invisible Struggles: The Hidden Challenges of Childhood35:31 The Importance of Community Support37:53 Navigating Care for Huntington’s Disease46:53 Finding the Good Amidst the Struggles51:20 The Power of Sharing Stories54:27 The Journey to Authorship and Healing#HuntingtonsDisease #Caregiving #SocialWork #LoriJones #Memoir #FamilySystems #DisabilityAwareness #NeurodegenerativeDisease© UAF Social Work