for HD Chorea in Adults

Care partner support

Help your loved one while also taking
care of yourself

An important step when caring for someone with Huntington’s
disease (HD) and chorea is finding time to care for yourself.1

The impact of Huntington’s disease (HD) and HD chorea affects not only the
person experiencing unintentional movements, but also their care partners and
everyone close to them.

Why self-care is so important⁠1-3

It may feel easier to focus only on care partner responsibilities or you may feel too drained to devote time to yourself. However, looking after your own needs as well may have practical benefits.

  • Balance: Balance the demands of your day by carving out time to do enjoyable things like taking a walk or having coffee with a friend
  • Health: Looking out for your own physical health may better position you to be more present for the person with HD chorea in your life
  • Motivation: Self-care can help you process the challenges of caring for someone with HD, helping with motivation and confidence

Start small⁠1,2

Consider an approach to self-care that
reserves a few minutes each day for
simple activities such as:

  • Walk around the block

  • Exercise

  • Listening to music

  • Reading one book chapter

  • Meditate

  • Do a crossword puzzle or
    play a mobile game

Lean on others⁠1-4

Opening up to others about caring for someone with HD chorea may help you manage your emotions, expand your support system,
and release feelings of tension or stress.
Some places to start:

  • Voice your feelings
  • Help others understand HD chorea and why caring for someone with HD takes so much of your time and energy
  • Keep people updated on the latest information so they can provide the best support
  • Accept offers of help. Dedicate this newfound time to doing something
    for yourself
  • Accept that not everyone may be
    able or willing to help you

Stay in the know

Sign up for HD chorea treatment tips, information about
patient support, and educational resources.

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References:

1. Taking care of you: self-care for family caregivers. Family Caregiver Alliance. Accessed January 24, 2024. https://www.caregiver.org/taking-care-you-self-care-family-caregivers

2. Care for the Family Caregiver: A Place to Start. National Alliance for Caregiving; 2010. Accessed January 24, 2024. https://www.caregiving.org/wp-content/uploads/2020/05/Emblem_CfC10_Final2.pdf

3. Downing NR, Gaba A, Gorsky SL, et al. A Caregiver Guide for HD Families. Huntington’s Disease Society of America; 2016. Accessed January 24, 2024. http://hdsa.org/wp-content/uploads/2016/05/HDSA_CaregiverGuideFamilies_Final.pdf

4. Talking about HD with family and friends. Huntington’s Disease Youth Organization. Accessed January 24, 2024. https://en.hdyo.org/a/387-talking-about-hd-with-family-and-friends