When sensory issues and Huntington’s behavioral changes collide
My wife has had sensory issues her entire life, and now Huntington's is in the mix
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My wife, Jill, who is gene-positive with Huntington’s disease (HD), shared a serious issue she’s been struggling with lately: “I hate showers, and if I hate them now, how will I push through the uncomfortableness when several HD symptoms make it too difficult?” she said.
This was not the kind of casual complaint we usually make about mundane tasks, but a raw, honest confession that cut straight to my heart. I know she’s been dealing with sensory issues her entire life — as in, she gets overwhelmed easily by them — so I knew she hated taking showers.
She hates the echo of the water hitting the shower walls, which creates an overwhelming cacophony in her ears. She hates the noise that the bathroom’s exhaust fan makes when she turns on the lights. And she hates how the steam from the shower clouds her vision and makes her feel disoriented. Even the temperature changes as she moves in and out of the water send her nervous system into overdrive.
“It’s like being assaulted by everything at once,” she said.
As I watched her face contort with genuine distress, I realized this issue cut much deeper for Jill. For someone without Huntington’s disease, these might sound like quirky sensitivities that could be easily managed. But for my beloved wife, who is navigating the progressive neurological and behavioral changes that HD brings, these sensory experiences have become genuine obstacles to basic self-care.
What makes Huntington’s particularly cruel is how it attacks the brain’s frontal lobe — the area responsible for motivation, planning, and what doctors call “executive function.” As the disease progresses, it doesn’t just make tasks more difficult; it diminishes a person’s ability to care about doing them at all.
The neurological damage can create a profound apathy where the internal drive to maintain routines, accomplish goals, or even engage in self-care begins to fade. It’s not laziness or depression in the traditional sense. It’s the brain’s reward and motivation systems being systematically damaged. People with HD often describe feeling like they’re watching themselves not care about things they know they should care about, trapped behind a wall of neurological indifference that grows thicker over time.
Naming her fears
Jill has always been meticulous about hygiene. Before her diagnosis, she was the type of person who never left the house without feeling put together. She understood the importance of cleanliness, both for health and social reasons. But now, some mornings, the thought of facing the bathroom overwhelms her before she even gets out of bed.
“I know I need to shower,” she explained to me, with frustration evident in her voice. “I know it’s important. But some days, I just can’t find the energy to push through all of that noise. What happens when I can’t push through anymore? What happens when Huntington’s takes away my ability to do things I don’t like but need to do?”
This question haunts us both, because we know that HD is progressive, which means that what she feels now will likely worsen over time.
But here’s what I’ve learned about Jill through this journey: Her honesty about these struggles is actually a form of courage. By naming her fears and acknowledging her challenges, she’s taking control in the only way she can. She’s refusing to suffer in silence or pretend that everything is fine when it isn’t.
We’ve started making adjustments. We installed a rainfall shower head that creates a gentler water flow. We switched to softer lighting in the bathroom. And I’ve learned to give her space and time when she needs to work up to showering, and time and space after she gets out so she can recover her equilibrium.
Whatever happens, we’ll continue adapting, finding creative solutions, and celebrating small victories. Most importantly, we’ll keep talking about it. Because I’ve learned that the things we don’t say out loud often become the heaviest burdens we carry. While I can’t fix her terminal illness or make showers less overwhelming for her, I can listen. I — and we — can adapt. I can love her through every difficult morning and celebrate with her on the easier ones.
Sometimes — like taking a shower even when you don’t want to — that has to be 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.
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