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.

The HD Chorea Independence Planner will help you decide when and how to address Huntington’s disease chorea before the involuntary movements begin and progress over time. This tool can also serve as a valuable reference for care partners if the person they care for becomes withdrawn or exhausted by symptoms of HD. Although it may be uncomfortable to think about what the future with HD holds, planning now to maintain your independence later empowers you to better manage this symptom of HD.

Answer the following 6 questions and use your responses to help develop your plan to maintain independence. You can email or download the plan once completed. Click here to print a copy to complete at your convenience.

Skip to the Doctor Discussion Guide >

What are some tasks or activities you do every day that you want to keep doing on your own for as long as possible?

Select all that apply:

99%

of people with HD chorea required assistance with some element of daily self-care.

Are you concerned that your ability to perform these tasks and activities might be affected by chorea?

People with chorea say one of the most frustrating things is the loss of independence, which leads to an increased reliance on others for help with daily activities.

Are you open to pursuing treatment to help maintain your independence?

Treatment is available that reduces chorea movements to help maintain independence.

Do you know at what point you would begin to consider treating HD chorea?

Involve your care partner/family
as you think about when you’d consider treating HD chorea. Keep
in mind the earlier you start treatment, the longer you may be able to do the tasks and activities you enjoy.

Although you’re not experiencing movements now, it’s important to check and reassess on a regular basis. How often would you like to check for the movements of HD chorea?

Chorea movements are usually noticed by care partners, family members, and/or doctors first because the changes are subtle. Listen to those close to you to get their perspectives.

Are you open to your doctor and/or care partner reminding you it’s time to discuss treatment when it becomes more difficult to perform daily tasks or activities?

You can use your responses to these questions as reminders when important treatment decisions need to be made in the future.

Your responses are ready!

Print or email your responses to view more information that can help you continue to develop your plan to
maintain independence.

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 independence longer. See real stories of people living with HD and care partners. They provide insight into their experiences navigating HD chorea with their loved ones.

See real Stories of Hope
Find out more about HD and HD chorea

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Reference: 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