Chasing windmills: Hope in the face of Huntington’s disease

Whenever there’s another failed clinical trial for Huntington’s disease, my wife, Jill, who is gene-positive, and I always try to find a silver lining. With each year that passes, doing that becomes more difficult.

Last fall, after another trial failed, Jill said to me: “Sometimes it’s due to safety concerns, lack of efficacy, or even financial constraints. But each time it happens, it’s devastating. It makes it so difficult to keep moving forward.”

After each failure, we always turn to her father’s favorite book, Miguel de Cervantes’ “Don Quixote.”

In many ways, our journey with Huntington’s parallels the quest of the novel’s protagonist, a delusional Spaniard who believes he’s a knight and fights injustice by chivalrously taking on imaginary foes, which is where the phrase “tilting at windmills” comes from — he jousts (or “tilts”) at windmills he believes are giants.

“You know, Carlos,” Jill said, “sometimes I feel like we’re chasing windmills. I want to stay strong, but some days it feels like we’re constantly pursuing a cure that might never come.”

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Her analogy to Don Quixote’s windmill scene was apt. Just as the knight mistakenly saw windmills as giants, we in the Huntington’s community often find ourselves tilting at our own metaphorical windmills — the elusive cure for this devastating disease. Yet, despite the setbacks, I’m continually amazed by Jill’s resilience. Like Don Quixote, she chooses to see beyond the harsh realities of her life and tries to find meaning in the struggle.

“We have to keep believing, don’t we?” she said. “Even if it seems impossible, we have to believe that, one day, someone will discover a cure.”

The history of Huntington’s research is filled with both heartbreak and hope. Our journey has been anything but straightforward. Each failure is a blow, but each small victory reignites hope.

To fight the unbeatable foe

Jill’s perspective reminds me that our quest, much like Don Quixote’s, is not just about the end goal. It’s about the courage to keep fighting, the strength to face each day with optimism, and the love that binds our community together.

Edward Wild, PhD, a professor of neurology at University College London and an associate director of the UCL Huntington’s Disease Centre, once described Huntington’s this way: “History has shown [Huntington’s disease] is an easy problem to define, for which it is surprisingly difficult to find solutions.”

In the face of repeated disappointments, it’s easy to feel discouraged. But Jill, like many in the Huntington’s community, chooses to focus on the progress that’s been made. She reminds me that each failed trial teaches us something new, bringing us one step closer to understanding this complex disease.

As we navigate this challenging journey, I’m grateful for Jill’s patience. Her ability to find hope in the face of adversity is truly inspiring.

In the end, our fight against Huntington’s disease is not just about finding a cure. It’s about living each day to its fullest, supporting each other, and never losing sight of hope. As Jill often says, “We’re not just waiting for a cure. We’re living, loving, and fighting every single day.”

So the quest continues. It’s not just about slaying giants or curing diseases — it’s about our community’s incredible capacity for hope, love, and perseverance in the face of seemingly insurmountable odds. Yes, we may be tilting at windmills, but, as Don Quixote taught us, there’s nobility in pursuing an impossible dream.

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.