Confronting the long-term effects of Huntington’s disease
Questions of self, identity, and behavior arise when thinking about the future
I sat across from my wife, Jill, watching her organize her nail polish. When she paused, I could see the weight of her body language: She was slumped forward, which is unusual for her, as she usually projects positivity in everything she says and does. She was lost in thought.
“Being mean and angry comes naturally to me, Carlos,” she told me, a statement that caught me off guard. “It’s not just easy; it feels good. But that’s not who I want to be.”
I’ve known Jill for years, and her confession perplexed me. The Jill I know is kind and thoughtful and always ready to lend a helping hand or offer encouraging words.
“Being nice is a choice I make every day,” she continued. “It’s who I’ve decided to be, despite what might come more naturally.”
This made me think. How often do we assume that a person’s outward demeanor is their true nature without considering the internal struggles they might be facing?
But Jill’s battle had taken on a new dimension. After being diagnosed with Huntington’s disease in 2018, she faces a future where she may not always be in control of her actions and emotions. Her terminal illness is a progressive brain disorder that causes uncontrolled movements, emotional problems, and loss of cognitive ability.
“I’m scared, Carlos,” she said, fighting back tears. “What if Huntington’s knocks down the wall I’ve built around my anger? What if all my hard work to be the person I want to be goes out the window?”
She knows that the disease could affect her brain’s ability to regulate her emotions and impulses. For someone like Jill, who has worked tirelessly to keep her anger in check, the prospect of losing that control is terrifying.
As I listened to her, I reached out my hand to hold hers. I told her I admire the strength she’s shown in her daily battle against her inner demons and the courage she’s showing to face this new challenge head-on.
Her story is a powerful reminder that the person we see on the outside isn’t always an accurate reflection of the battles being fought within. It’s a testament to the power of choice, of deciding who we want to be and working toward that goal every day.
As for the future, we know that Huntington’s will negatively affect her. But knowing her determination and the support system she has in place, I believe Jill will face this challenge with the same resolve she’s shown throughout her life.
Her journey is a poignant example of how complex humans are and the ongoing struggle many of us face to be our best selves. No matter what happens, I plan to hold her hand every step of the 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.
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Bonnie Negron
Just read your story about your wife’s emotional stress. I am going through the same thing with my husband. He just found out in the fall he is HD positive with a cag of 41 and just turned 70 last week. I am trying to not take it personal when he has an outburst and pray daily for patience. Thank you for the story. And knowing I am not alone. You can email me if you wish.
Amy Jones
Thank you for this perspective…it rings so very true! We all have that choice and inner struggle. I see my husband’s (Jill’s cousin, also diagnosed years ago with HD) inability to control emotions creeping up more often now but like Jill he still fights it. Afterwards he processes what happened over and over again for days. We find that it helps tremendously to keep him around positive, uplifting family and friends. Anything less turns into a panic attack for him because the filter is completely gone once that anger is triggered. Also he could NEVER make it to an amusement park!!! The crowd, the lines, the parking lot, the drive there … way to go Jill for even attempting to do things you’ve always enjoyed and traveling, going to shows, it’s wonderful to hear she can still enjoy those things. I’m grateful for your articles. Thank you.