Planning ahead can make all the difference

For those with Huntington’s disease (HD) chorea, preserving independence means planning ahead. It’s important to make decisions about how you’ll handle HD chorea now—even if you’re not experiencing involuntary movements yet—so you can be prepared for the future.

Planning ahead can make all the difference

For those with Huntington’s disease (HD) chorea, preserving independence means planning ahead. It’s important to make decisions about how you’ll handle HD chorea now—even if you’re not experiencing involuntary movements yet—so you can be prepared for the future.

Here are some steps to help you decide when and how to address
HD chorea as the involuntary movements progress over time.

discover a treatment
for hd chorea
When to talk to your doctor (and others) about Huntington’s disease (HD) chorea

  • Make an activities list (with your loved ones) of five things you do every day
    that you want to keep doing on your own or with minimal assistance for as long as possible. Here are some examples:

    • Taking a walk
    • Doing the dishes
    • Getting dressed
    • Bathing
    • Folding laundry
    • Eating out
    • Traveling
    • Exercising
    • Using your phone/
      talking with friends
    • Reading a book
    • Cooking food

  • Chorea affects everyone differently so decide now on a chorea threshold; in other words, how severe your chorea must be to trigger the conversation with your doctor. For example, if you trip on the stairs a few times, is it time to talk to the doctor? Or is it when you can no longer walk the dogs on your own? Or brush your teeth?

  • Ask your family to help monitor your ability to do the things on your list. Sometimes, the movements of chorea can be dismissed as something else so it’s good to have another person’s perspective.

Changes in your living environment

  • The involuntary movements of Huntington’s disease (HD) chorea can make certain areas of your home—especially the kitchen and bathroom—unsafe.1

  • It’s important to decide what needs to be done to make living spaces easier and safer to navigate.

  • For example,

    • Are rugs, carpets, stools, or footrests becoming a hazard because chorea is making it difficult to walk?
    • Are changes to the bathroom like safety bars and non-skid bathtub/
      shower mats in order because chorea has made bathing alone a challenge?
    • What adjustments can be made in the kitchen or dining area to make eating and drinking safer?
When it’s time to talk to your doctor about treatment for HD chorea

  • Using your activities list, determine how much HD chorea has impacted your ability to accomplish 
    daily activities.

  • Discuss with your loved ones how soon you should begin treatment for your HD chorea. The earlier you start treatment, the longer you may be able to preserve your ability to do those things you love.

  • Share the impact of HD chorea on your daily life and your goals for maintaining your independence for as long as possible with your doctor.

Talking with your doctor

When you’re ready to talk to your doctor about Huntington’s disease (HD) chorea and a treatment option, here are some suggestions below to help start the conversation.

Download HD chorea Discussion Guide

Preparing for the appointment

In the days or weeks before you and your loved one see the doctor, keep track of your involuntary movements by writing down the location of the movements (face, hands, torso, legs, and/or feet), how often the movements occur, and when they occur most often.

Describe your involuntary movements as clearly as possible. Use examples from your activities list to share the severity of chorea, and its impact on your ability to do things independently.

  • I can no longer hold a book because my hands move uncontrollably.
  • I find it hard to walk because my legs and feet won’t stop moving.
  • People have a hard time understanding me when I talk on the phone.
  • I can’t pour a glass of milk without spilling.
  • I have a hard time buttoning my shirt in the morning.

Ask your care partner or a loved one to attend the appointment with you. Sometimes it can be hard to describe the movements and the impact chorea is having on your life.

During your visit

Bring questions to ask your doctor about chorea and any treatment options. Consider the following to get started:

  • What causes chorea?
  • Will chorea go away on
    its own?
  • Can chorea get worse?
  • How do you assess the severity of chorea?
  • What is the best way to track my chorea?
  • What are my options for treatment?
  • How does this
    treatment work?
  • Why did you recommend this treatment?
  • How long before I see a difference in my chorea?

Remember to ask about next steps. The goal is to leave your appointment with a clear understanding of how treatment may help you preserve your independence longer.

Discover a treatment
for HD chorea
Learn how HD chorea can affect families

See Teresa describe the challenges living with HD chorea brings for her and her family.

transcript

I haven’t been able to walk very well sometimes. It’s affected my movement, and a lot of movement I have, and, um, it just has been difficult because I move a lot and it affects my family who I love very much. Um, they don’t like seeing me hurt at all.

“ The first thing I noticed …was movement in his feet…his toes would be constantly moving. Then I noticed when he would sit in the recliner constantly moving. He was beginning to move a lot more all over, not just his feet. ”

—Myra, caring for her husband with HD chorea

What an HD chorea diagnosis means for you and your family

It’s important to have discussions early in your HD journey about the impact chorea may have on your life.

Making decisions sooner rather than later may help you maintain your independence longer. If you have children, it will help them understand what to expect as you navigate HD chorea together.

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References: 1. Tarapata K, Murray CF. A Caregiver's Guide to Huntington's Disease. New York, NY: Huntington's Disease Society of America; 2011. Accessed January 27, 2022. https://hdsa.org/wp-content/uploads/2015/03/A-Caregivers-Guide-to-HD.pdf