An ‘aha!’ moment about a father’s neurological symptoms

My wife, Jill, recently had an “aha!” moment about some of the neurological symptoms her late father experienced during his battle with Huntington’s disease. 

While folding some laundry, she picked up a large sheet that had been sitting in a chilly part of our home. The sheet felt cold, but also strangely wet. As she tried to determine if it was actually damp or just cold, a thought struck her: “Is this what my father felt when he thought everything was wet?” 

This simple moment led to a profound realization: What if her father’s brain had been misinterpreting sensory input all along? What if when he felt cold, his brain processed it as wetness? As Jill explained the thought, I was struck by how a simple moment can shed light on what could’ve been a misunderstanding. 

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‘Acknowledge them as real experiences’

For years, Jill’s father struggled with what everyone thought were obsessive behaviors and hallucinations, which are common Huntington’s symptoms. He’d constantly complain about objects feeling wet, even though they weren’t. The intensity with which he fixated on his “wet” shoes and clothes often left everyone tired, irritated, and frustrated.

Instead of arguing that he was mistaken, Jill and her family opted to problem-solve. They gave him a shoe-drying rack and constantly put his “wet” clothes in the dryer. 

By solving the imaginary problem, Jill now surmises that they had inadvertently solved what could’ve been the real issue: He might’ve felt cold. 

In sharing this tale, Jill pointed out that being a caregiver can be exhausting. Fixing a problem for someone with late-stage Huntington’s disease is like playing whack-a-mole, she told me. As soon as you take care of one thing, something else pops up — all while dealing with more pressing issues, such as helping to keep the gene-positive person’s weight at a level that matches the calories being burned by their constant movements. 

When I asked Jill what I should do if she starts to lose some concepts of reality, she gave this advice: “Validate my experiences. Instead of dismissing unusual sensory complaints, acknowledge them as real experiences. Pay attention to temperature and texture in my environment, and encourage me to describe my sensations in detail so that I feel like I am part of the solution instead of the problem. What I share may provide valuable insights into what I am feeling.” 

All of her advice was solid and made sense, but she also reminded me that it’s important to help her break out of what she calls “thought loops,” since something else could be going on. 

Those recurring thought patterns, which are common with Huntington’s disease, aren’t healthy, even if they’re noting something real. Jill added that it’s important to talk to her neurologist if she starts experiencing any new symptoms, whether physical or psychological. Medication adjustments can also help sometimes. 

As Jill talked about her father’s journey, she was sad for the struggles he’d faced. But I could also feel a sense of hope that this new understanding might help us cope with symptoms she might soon confront. Jill believes we should stay open-minded and curious, even when dealing with a disease that she considers herself to be an expert in, partly because of her experience with her father’s side of the family. 

Sometimes the most profound insights come from the simplest moments, like feeling a cold sheet and suddenly understanding a loved one’s world in a whole new way. 

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.