Tiny systems that keep my life moving with Huntington’s disease

Some days, my brain feels like it’s buffering. Not in a dramatic, emergency kind of way. It’s more like I’m standing in my kitchen with a cup in my hand, trying to remember why I walked in there in the first place. I can see what needs to happen next, but I can’t always access the steps quickly. It’s like the “go” button is there, but it takes longer to respond.

Living with Huntington’s disease has taught me that getting stuck doesn’t always look like giving up. Sometimes it’s staring at a text message I want to answer, feeling the weight of choosing the right words. Sometimes it looks like a laundry basket that stays full because the idea of sorting, carrying, folding, and putting away feels like climbing four separate hills. Sometimes it looks like decision fatigue that hits before I’ve even eaten breakfast.

So I’ve learned to stop waiting for the perfect burst of energy or clarity. Instead, I lean on tiny systems — small, almost boring supports that keep my life moving when my mind wants to freeze. They aren’t flashy. They don’t belong on a vision board. But they save me in real time.

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The systems that keep me moving forward

One of my first tiny systems was accepting that I can’t hold everything in my head anymore. There are days my thoughts feel scattered, like papers blown across a parking lot. So I don’t argue with that reality. I write things down.

I keep one running list, not five. In the past, I had notes in my phone, sticky notes, a planner, and messages to myself that I’d never read again. Now I have one place I can trust, one list that acts like my external brain. If something matters, it goes there. If it’s not there, it doesn’t exist. That sounds harsh, but it’s actually freeing. I’m no longer trying to be a human filing cabinet.

Another tiny system is reducing choices before I’m tired. People underestimate how exhausting choices can be when your brain is already working overtime. On days when I’m stuck, even small decisions can feel huge. What should I eat? Which task first? Should I shower now or later? Should I respond to that email today or tomorrow? Huntington’s can turn a simple day into a mental obstacle course.

So I decide certain things ahead of time. Not rigidly, but enough to remove extra strain. There are default meals I return to when I can’t think: the same few breakfasts, the same few easy dinners. There are default outfits that don’t require me to stand in front of the closet negotiating with myself. There are default routines that start my day without me having to invent it from scratch.

When my brain feels stuck, defaults become kindness.

I also break down tasks into smaller chunks than I feel necessary. I’m talking almost laughably small. Not “clean the kitchen,” but “throw away trash.” Not “do laundry,” but “start the washer.” Not “work on my project,” but “open the document.” People who don’t live with cognitive overload might roll their eyes at that. But I’ve learned that my brain doesn’t always resist the work itself. Sometimes it resists starting.

Starting is the hardest part when you feel stuck. So my system is to create starts that are easy to step into. And progress doesn’t have to be dramatic to be real.

I use timers as a tiny system, too. Not because I’m trying to become disciplined, but because time can get weird when my brain is stuck. Sometimes I underestimate how long something will take and end up avoiding it. Sometimes I overestimate and feel overwhelmed before I begin. A timer keeps me anchored in reality. Ten minutes. Fifteen minutes. A short window where I can tell myself, “You don’t have to do everything. Just do something until the timer goes off.”

The timer is also permission. When it rings, I can stop without guilt. I’ve already kept my promise.

That’s my survival system. It keeps me from sliding into shame.

Because shame is the real quicksand. When my brain feels stuck, shame tells me I’m failing at life. Shame tells me I should be able to do what I used to do. Shame tells me I’m falling behind and everyone can see it. And if I listen to shame, I get more stuck.

Tiny systems are my way of refusing shame. They remind me that I can still care for my life, even if I have to do it differently now.

Huntington’s may change how my brain works and how I move through the world. But tiny systems keep me moving. And on the days my mind feels stuck, that is more than enough.

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.