Listening when my wife describes the symptoms of Huntington’s

How an unusually colorful description of her fatigue makes me pay attention

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by Carlos Briceño |

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Huntington’s disease, a neurodegenerative condition, can cause symptoms that are often unpredictable and debilitating. My wife, Jill, who is gene-positive for Huntington’s, has provided me with valuable insight into what she feels by coming up with some impressive descriptions of it.

Jill shared a poignant description after a long day at a local farmers market. She loves going there to buy fresh produce and support local businesses. Nevertheless, the crowds, chaos, and constant noise wear her out. When we arrived home, she sunk into our comfy sofa and, with a weary smile, said, “My head feels like it’s popping popcorn.”

At first, that sounded like an odd thing to say, but then I thought about what she meant. She was clearly overwhelmed and tired, and her words for that feeling allowed me to visualize it and empathize with her.

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As time goes on, Jill will experience increasing levels of fatigue. But is the feeling that her brain is like popcorn a symptom? The short answer is not exactly. Huntington’s is known for its wide range of symptoms, including involuntary movements (chorea), cognitive decline, and psychiatric issues. However, describing fatigue as popcorn isn’t the classic symptom listed in medical textbooks.

So what could be causing this sensation? While I’m not a medical expert, I’ve come to understand that Huntington’s affects each person differently. It’s not just about the physical symptoms; the disease also affects a person’s perception of the world around them. Jill’s comparison is her brilliant way of expressing the sensations she’s feeling in her tired mind.

With Huntington’s, the constant battle with motor symptoms, cognitive challenges, and emotional ups and downs can drain even the strongest of spirits. And while popcorn might seem like a whimsical comparison, it speaks volumes about the fatigue that plagues Jill and others with the illness.

I’m the salt

As her caregiver, I’ve learned to listen closely to Jill’s words, even when they seem to defy logic. When she shared that description, she was revealing a deeper truth about the daily struggles she faces.

So what do I do when Jill’s head feels like it’s popcorn popping? I take it as a sign that she needs rest, understanding, and support. It reminds me that she needs a quiet environment where she can unwind and recharge.

It also underscores the importance of empathy, patience, and acceptance as she continues on her journey of suffering. I must be the calm in the midst of her brain’s chaotic “popping,” and nothing will stop me from loving her unconditionally as her disease progresses.

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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