For those with Huntington’s disease (HD) chorea, preserving independence means planning ahead. 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.
1. 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?
2. 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.
The involuntary movements of Huntington’s disease (HD) chorea can make certain areas of your home—especially the kitchen and bathroom—unsafe. 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?
3. Make a Plan
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.