How my wife describes the loss of cognitive function in Huntington’s

If I ever need a short, concise way to describe something, I consult my wife, Jill. So when a friend asked Jill to describe some of the challenges she’s faced with Huntington’s disease, she began with one of its most devastating symptoms: the gradual loss of cognitive function.

Jill shared that her life used to be like walking across a familiar footbridge. Before her diagnosis in 2018, this bridge represented the comforting routine of daily life. Each day, she would cross it, expecting to arrive at the same destination. It was a reassuring constant in her world.

However, even before her official diagnosis, Jill had begun to notice subtle changes. She described it as feeling loose boards beneath her feet — small, almost imperceptible shifts in her cognitive abilities. She was losing words, forgetting things, and having trouble following directions. While these things can sometimes be attributed to aging, for Jill, they were early warning signs that something wasn’t right.

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Jill explained that, since her diagnosis, living with Huntington’s has been like watching the bridge slowly disintegrate as she walks. One moment, she’s confidently striding forward, and the next, she’s falling through an empty space where a solid plank used to be. These gaps represent losses in her cognitive function — perhaps a memory, a skill, or a part of her personality.

The cruelty of Huntington’s, Jill says, stems from its unpredictability. As she continues to walk across this increasingly treacherous bridge, she’s aware of what’s missing. She can see the gaps in her cognitive abilities, and she remembers what used to fill those spaces. It’s a constant reminder of what she’s lost and what she continues to lose.

With each passing month, Jill finds more planks missing from her bridge. The gaps grow larger, and the journey becomes more challenging. She knows that, eventually, the very structure that has kept her moving forward — her cognitive abilities — will erode to the point that progress becomes impossible.

Jill’s metaphor paints a vivid picture of this disease’s progressive nature. It’s not just about losing abilities; it’s about losing them while being fully aware of what’s slipping away. It’s about continuing to walk a path that’s becoming increasingly difficult, knowing the ground could give way with each step.

Despite the challenges, Jill perseveres. She continues to walk her bridge, adapting as best she can to the changing landscape of her mind. She rarely complains about the gaps she falls through, but I can tell that, on some days, the gaps are too big for her to jump over alone. As her husband, I can’t fix the bridge, but I can stand on the other side to catch her when she falls.

Jill’s analogy, though sad, reminds me that Huntington’s isn’t just a collection of symptoms; it’s also a devastatingly progressive reconfiguration of her thoughts and actions. What Jill shared gave our friend a clear glimpse into the reality of living with Huntington’s — a reality that demands our empathy, understanding, and continued efforts to find better treatments and, ultimately, a cure.

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.