When Huntington’s results in the feeling of control slipping away

Imagine anger residing at one end of your home and autonomy at the other, with Huntington’s disease (HD) sitting right in the middle.

Before my wife, Jill, found out eight years ago that she is gene-positive with HD, she could usually tell when she was becoming irritated. She could then decide how to process those feelings. Now, there are days when anger arrives faster and leaves more slowly.

HD changes parts of the brain that deal with impulse control and emotional regulation, so irritation that someone might have once shrugged off can suddenly feel like a spark in dry grass.

She isn’t choosing to have a short fuse; her nervous system is simply more easily overwhelmed than it used to be.

At the same time, HD keeps taking little bites out of her independence, which is where autonomy comes into play. Autonomy is the sense that you have a say in your own life and that you can still make decisions and act on them.

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But what happens when many common duties in life — such as driving, working, doing taxes, cooking, and even showering — eventually become harder? When that occurs, Jill feels another piece of control slipping away, which illustrates how a more volatile brain and a shrinking sense of control feed each other.

We notice it most when decisions are made about her rather than with her. If I say, “You cannot do that anymore,” even when I am thinking about safety, her anger spikes.

It’s not just the rule that hurts; it’s the feeling of being overruled. The same thing happens when doctors talk only to me, or when someone assumes she cannot understand a conversation simply because she has HD. The message she hears underneath is, “You are no longer in charge of your own life,” and that message hurts.

Even small daily choices can tilt things one way or the other. If I tell Jill, “You have to take this pill right now,” she may snap back, not because she hates the medication, but because the command reminds her of how much she has already lost.

If I say, “We need to take this tonight. Do you want it before or after you eat?” she still has to take the pill, but she gets to choose how. That tiny bit of control doesn’t erase her frustration, but it often keeps her from boiling over.

We’ve also learned that naming what is happening can ease the pressure. When her anger flares after she drops something for the third time, I used to focus only on the outburst: the slammed drawer, the sharp words. Now I try to see the loss beneath it. For example, saying, “I know it’s awful when your hands don’t do what you want as much as they used to,” sometimes lets the anger shift into sadness, which is easier for both of us to sit with. It doesn’t fix the broken neurons in her brain, but it does remind her that I see the person, not just the symptom.

There are still moments when we both fail. I push too hard, or she lashes out in ways that hurt. Later, when things are calm, we talk about what was really going on. Almost always, the answer is some version of, “I felt like I did not have a choice,” or, “I felt like you forgot I’m still me.”

That is the voice of autonomy, trying to be heard through the neurodegenerative noise of HD.

We try to build what we call “islands of control” into her day to balance out the places where safety or disease have taken control away. She picks her clothes, chooses the music, or decides which small tasks she wants to handle herself. Those choices may look minor from the outside, but for Jill, they are proof that HD hasn’t taken everything. When those islands are respected, her anger toward the things she cannot change is often less explosive.

None of this means that autonomy alone can erase HD-related anger. The disease really does alter the brain, and sometimes medication, therapy, and professional guidance are necessary to keep everyone safe. But we have seen that, when Jill feels consulted instead of managed and heard instead of handled, her anger is less about fighting me. We are both reminded to be a little more patient, a little less defensive, and a little better at remembering that we are on the same side, even when the disease tries to convince us otherwise.

Note: Huntington’s Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Huntington’s Disease News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Huntington’s disease.