Understanding how Huntington’s disease affects my cognition
Cognitive symptoms are too often misunderstood or overlooked
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People often associate Huntington’s disease (HD) with movement symptoms like chorea, fidgeting, and unsteadiness. But the truth is that many of the most life-altering symptoms of HD don’t occur in the muscles at all. They happen quietly inside the mind. And because these changes aren’t always visible, they’re often misunderstood or overlooked, even by people who love us, and sometimes even by medical professionals.
Cognitive changes in HD can touch every part of daily life. They affect how we think, process information, make decisions, and respond to the world around us. They can influence conversations, relationships, work, routines, and our sense of identity.
The cognitive symptoms of HD
Confusion in HD doesn’t usually show up all at once. It arrives slowly, subtly, like fog rolling in during the early morning. At first, you don’t notice it, you just feel “off,” or you forget why you walked into the room. Over time, tasks that used to be automatic start taking a little more effort. You may need to double-check things you used to do quickly. You may second-guess yourself. You may lose track of conversations midway through.
For me, confusion doesn’t feel dramatic. It feels like my brain’s gears are catching on something. Like there’s a tiny delay between what I want to do and what my brain is able to coordinate. I know what I want to say, remember, or do, but sometimes it takes longer to access it.
Recognizing this is the first step toward compassion, both for ourselves and from others.
One of the most misunderstood aspects of HD is slow processing speed. This doesn’t mean a person is unaware or incapable. It simply means the brain needs more time to take in information, sort through it, and respond.
Here’s what slow processing can look like:
- Needing a few more seconds before answering a question
- Pausing often during a conversation
- Struggling to keep up in fast-moving discussions
- Feeling overwhelmed by large amounts of information
- Needing written instructions rather than verbal ones
- Losing track of the topic when people talk too quickly
From the inside, slow processing feels like watching the world move at double speed while you’re stuck at normal speed. You know what you want to say. You care deeply about the conversation. You’re engaged. But your brain needs time.
Extra seconds matter. They give us space to understand, to think, to respond meaningfully. When people rush us, interrupt, or assume we’re disengaged, it can feel frustrating or even humiliating, because we do understand. Our brains just work differently now.
One of the greatest kindnesses someone can offer a person with HD is time. A pause. A breath. A moment of patience. It may seem small, but it changes everything.
If confusion and slow processing are the fog and the delay, then decision fatigue is the weight that settles over everything else. It’s one of the least visible, but most exhausting, cognitive symptoms of HD.
Decision fatigue doesn’t just mean struggling with big decisions. It means everyday choices can feel overwhelming:
- What to wear
- What to eat
- Which bill to pay first
- What task to do next
- How to organize a schedule
- When to leave the house
The mental effort required to make decisions can quickly drain energy. For some people, decision-making becomes so overwhelming that they avoid choices altogether, withdraw, or rely heavily on routines.
For me, decision fatigue feels like being handed a puzzle with too many pieces. I know the answer is in there somewhere, but the process of sorting through it leaves me mentally drained. And when I’m already dealing with fatigue, irritability, or sensory overwhelm, even small decisions can feel monumental.
This is why predictable routines, simplified choices, and clear step-by-step plans can be so grounding for people with HD. They reduce cognitive load. They bring a sense of calm and stability. They make daily life feel more manageable.
Cognitive changes in HD can be frustrating, embarrassing, and isolating, especially when others don’t see what’s happening beneath the surface. But they also offer an opportunity to understand yourself differently.
Living with cognitive changes has taught me:
- I’m still intelligent, even if I process more slowly.
- I’m still capable, even if I need routines.
- I’m still me, even if I need more support.
Understanding cognitive symptoms doesn’t make them disappear, but it does make them less frightening. Naming them makes them less isolating. Talking openly about them helps create a world where people with HD are met with patience, dignity, and understanding, instead of confusion, frustration, or doubt. And every time we speak about them, we make room for someone else to feel seen.
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.
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