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Make a difference by planning ahead

For those with Huntington’s disease (HD) chorea, preserving independence means planning ahead. 
Even if you’re not experiencing uncontrollable
movements yet or are only experiencing mild
movements, it is important to make decisions about
handling HD chorea now, and prepare for the future.

Independence Planning Tool

The HD Chorea Independence Planner will help you decide when and how to address HD chorea before uncontrollable movements appear or progress. This tool can also be valuable for loved ones, care partners, or those looking to learn how to care for someone struggling with Huntington's disease symptoms. 

Planning now can help preserve independence longer. Treating HD chorea symptoms when they first appear can lessen disruptions to day-to-day living.

Answer the 4 questions below to help develop a plan for maintaining independence.
The plan can be emailed or downloaded once completed, or click here to print a copy to complete at your convenience.

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:

DID YOU KNOW?

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

Are you concerned that chorea may impact or already be impacting your ability to perform these tasks and activities?

Select one answer:

DID YOU KNOW?

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.

At what point would you begin to consider treating HD chorea?

Select one answer:

DID YOU KNOW?

The earlier you start treatment, the longer you may be able to continue doing tasks and activities you enjoy. Let your loved ones or healthcare provider know when you consider seeking treatment for HD chorea.

Treatment options are available for movement disorders like HD chorea. What treatment considerations are most important for you?

Select all that apply:

DID YOU KNOW?

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

Completed

Your responses are ready!

Your plan for independence is important and should continue to develop over time according to your wants and needs. Email or download your responses so that you can keep them with you to reference as your circumstances evolve.

Talk with your
healthcare provider

When you're ready to talk to your healthcare provider about HD chorea, and a treatment option, it can help to keep track of your uncontrollable movements so that you can describe them as clearly as possible. Having your care partner at the appointment with you can often help to fill in any details that are hard to describe.

Here are some more suggestions to help start the conversation.

Download HD chorea 
discussion guide

Remember to ask about next steps

If you have any questions about treatment options, the goal is to leave your appointment with a clear understanding of how they 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.

“ Our family first started noticing...uncontrollable movements in his shoulders. He also declined cognitively and had a hard time paying attention...I remember that his chorea symptoms worsened over time—he'd be moving but just didn't know it. ”

—Hiren, caring for his brother 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.

Planning 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

Register for HD
chorea info

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