This book is a compassionate guide providing practical yet therapeutically oriented mental health support and self-care strategies for people with Huntington’s disease and their families to empower them in navigating this journey with hope and clarity.
Coping with Huntington's is a compassionate guide providing practical yet therapeutically oriented mental health support and self-care strategies for people with Huntington’s disease (often referred to as HD) and their families, to empower them in navigating this journey with hope and clarity.
It offers strategies for self-help and wellbeing that are firmly grounded in the principles of Acceptance and Commitment Therapy (ACT). It bridges professional and personal insight by bringing together the author’s expertise as a clinical psychologist and researcher, and lived experience as a member of a family affected by Huntington’s. Topics covered include, but are not limited to:
• Physical symptoms and mental health difficulties associated with Huntington’s.
• Understanding Huntington’s in both individual and family contexts, including impacts across families.
• Benefits of ACT strategies for managing difficulties associated with Huntington’s.
• Practical guidance aligned with ACT around emotional resilience, acceptance, and meaningful living.
The book covers impacts on people with the Huntington’s gene expansion, and also explores the experiences of “at-risk” family members, people without the gene expansion, caregivers and loved ones, and specific challenges that these respective groups may face.
With evidence-based strategies to support mental health and wellbeing, this is a compelling read for families and individuals with lived experience of Huntington’s disease. It will also interest practitioners and healthcare professionals who wish to better understand Huntington’s and provide more effective support.
Arvustused
'This book offers an extremely unique perspective on the many facets of Huntingtons disease telling the story from a personal perspective, then offering some really practical insights on coping with the disease, and into psychological research. What stands out to me is the resilience families with Huntingtons disease have: as Sarah points out people from Huntingtons families are not helpless, and Huntingtons disease doesnt get to beat us.'
Cath Stanley, Chief Executive, Huntingtons Disease Association England and Wales
'A very brave and personal book and an important resource. Moving and inspiring, it will be very useful for our community of people affected by or dealing with Huntingtons.'
Patrick Weydt, MD, Chair of the European Huntingtons Disease Network
1. Wearing three Huntington's hats: Family member, therapist and
researcher
2. Knowing the enemy: Impacts of Huntington's on individuals
3.
Knowing yourself and your family
4. Introducing Acceptance and Commitment
Therapy
5. Your dad does that!: The stories we tell ourselves
6. Inviting
the monster in for tea
7. The price we pay for love: Grief and Huntingtons
8. To defeat it, we have to name it: Shame, stigma and Huntingtons
9.
Finding what matters
10. Bringing values to life: Aiming for better, not
perfect
11. Committed action: Setting a meaningful goal
12. All roads lead
to Huntingtons: Difficult decisions
13. Building your forward plan
14.
Testing your brakes regularly
15. Reaching out for more support
16. Its
better in the light
17. Appendix A: Exercises and resources
18. Appendix B:
Mental health concerns
Sarah Gunn, DClinPsy, is a clinical psychologist and researcher from a Huntingtons family, specialising in mental healthcare for people affected by Huntingtons. She uses ACT in her work and leads research into the psychological impacts of Huntingtons, taking a compassionate approach to understanding and supporting people and families navigating the challenges of this condition.
