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.

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Visit:https://RevolutionarySocialWork.com

Email Professor Ace to connect or collaborate:castettler@alaska.edu

Learn more about Lori Jones and Spared:Amazon: https://www.amazon.com/Spared-Memoir-Resolve-Lori-Jones-ebook/dp/B0D9HV2L25

Spreaker: https://www.spreaker.com/episode/spared-with-lori-jones--66411470

YouTube Short: https://youtube.com/shorts/bLbp4JY5UNA?feature=share

Facebook: 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/

Chapters

00:00 Intro and theme

01:25 Introduction to Huntington’s Disease and Personal Background

04:12 Understanding Huntington’s Disease

07:22 Personal Experiences with Family and Illness

10:22 The Impact of Secrecy on Family Dynamics

13:26 Navigating Diagnosis and Care

16:24 The Role of Social Workers and Support Systems

19:18 Hope and Advances in Huntington’s Disease Research

29:35 Becoming Guardians: A Journey of Responsibility

31:42 Invisible Struggles: The Hidden Challenges of Childhood

35:31 The Importance of Community Support

37:53 Navigating Care for Huntington’s Disease

46:53 Finding the Good Amidst the Struggles

51:20 The Power of Sharing Stories

54:27 The Journey to Authorship and Healing#HuntingtonsDisease #Caregiving #SocialWork #LoriJones #Memoir #FamilySystems #DisabilityAwareness #NeurodegenerativeDisease

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