“Daily schedules take away the stress of planning and organizing, and the repetition day to day provides a sense of security,” Kegelmeyer says. The amount of structure that works best varies from person to person and may change as HD progresses, she says.
That structure can be particularly useful, because HD may affect executive function, which are the skills that help you start and sequence activities, switch between tasks, remember what comes next, and judge how long something will take.
When designing your routine, consider your usual energy patterns and build in meals, movement, and rest throughout the day.
“For many people, it is more helpful to establish broad anchors, such as morning, midday, afternoon, and evening,” Kegelmeyer says. An anchor can also connect one activity to another, such as routinely exercising after lunch. The exact time can change, but lunch becomes a familiar cue for what happens next, says Kegelmeyer.
To leave room for days when your symptoms or energy are different, Lemke suggests thinking in three categories:
- Things You Do Every Day These include basic routines such as meals, self-care, movement, and rest.
- Things for a Higher-Energy Day These might be activities like going for a walk, doing a hobby, running an errand, or visiting with someone.
- Things for a Difficult Day These could include shorter periods of movement, making a phone call, doing a simple hobby, or getting additional rest.
“It can also be helpful to identify one small activity each day that brings joy or a sense of purpose and schedule it during your best energy window,” says Lemke.
Kegelmeyer and Lemke say that signs a routine or activity level may be too demanding include:
- Marked fatigue or unintentional weight loss
- Increased anxiety, irritability, or angry outbursts
- Worsening chorea or more confusion
- Withdrawal or other negative behavior during or after an activity
If these changes show up, Kegelmeyer recommends adjusting, shortening, or replacing the activity.
“Signs that there may be too little activity include increasing social withdrawal, boredom, reduced physical activity, or greater dependence on others for activities the person can still perform independently,” says Lemke.
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