My wife battles Huntington’s disease with a fierce attitude
Fighting the disease requires commitment and active participation, Jill says
In our quiet moments together, my wife, Jill, often shares her deepest thoughts with me. Recently, one such conversation left a profound mark on my heart.
Jill’s Huntington’s disease has shaped our lives and made every moment precious, but her perspective on the journey is a constant source of inspiration.
“Carlos, I’m not just waiting around to die,” she told me. “Every day is a battle, and I’m fighting with everything I have.”
Jill’s words resonated deeply. Because she has a progressive disease, it’s easy to feel overwhelmed and let despair creep in. But Jill’s outlook is different. She views her journey not as a passive decline, but as an active fight, a daily commitment to living fully and bravely.
“I use the word ‘fighting’ for a reason,” she continued. “It reminds me that battling Huntington’s requires active participation. It’s not something I will allow to happen to me. I’m engaged in this fight, every step of the way.”
When others feel less alone
Her determination is awe-inspiring. Despite the challenges — the chorea, the cognitive changes, her depression and anxiety — Jill refuses to surrender to this disease. She tackles each day with a spirit that defies the darkness Huntington’s tries to impose. It all starts with her accepting that she has the condition and being stubborn enough to refuse to play by its devastating rules.
In other words, she doesn’t sit around throwing a pity party for herself, but fills her days with activities she loves. She does her nails. She likes to organize our home. She loves to visit family. Each moment of joy and connection is a victory in her ongoing battle.
Another admirable aspect of her fight is her willingness to share her journey with others. I’m proud of Jill for allowing me to write about her in this column. Comments from readers encourage us, because we hear about how others don’t feel so alone in their battles.
Jill’s declaration that she’s not waiting to die but is actively fighting instead is more than just words. Her example serves as a reminder that while we cannot control everything that happens to us, we can control how we respond.
As we continue on this journey, I hope her determination to make every moment count inspires everyone reading this to do the same.
In the end, it’s this fierce attitude and fighting spirit that define Jill, not the disease. It’s the love, the laughter, the shared moments of joy, and the determination to live fully. As her husband, I am honored to be by her side, fighting alongside her, 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.
About the Author
Helena Soares
Parabéns pela forma como, em conjunto, enfrentam esta doença.
Um abraço
Chrissi Penney
I absolutely love reading your posts every week!
I am 46 & gene positive
My boyfriend of over 14 years is my safe space soft landing place when I get too much in my head. He advocates for me and I fight for us to continue our journey.
I couldn’t have gotten this far without him ☺️💜💙
I share my HD story like you guys and I appreciate you guys!!!
Thank you
Elaine Carr
Carlos,
I am in the same situation as you are.
Reading your stories are very helpful to me. I find that MY biggest problem is patience, patience, patience.
Tetrabenazine is helpful to slow down the Chorea, hoping Ingrezza becomes available to him so he can take ‘one and done’, that would be a big help to him.
Best wishes to you and your family.
Amy Jones
Carlos!! I couldn’t have said it better myself. I am so proud of how my husband, Jill’s cousin, handles his daily struggle with dignity and fierce strength in this battle that we fight together. It’s sometimes so difficult to explain to extended family how very difficult every day is. We try to stay within the circle of people who truly TRY to understand and appreciate those that respect our battle and the way we fight it. I so appreciate your articles. Thank you, Amy
Stacey Luther
Carlos,
Your wife is a tough lady with such a great attitude! My mother passed away from HD almost a year ago. Your story spoke to me because my mom (Peggy) was like Jill. My siblings and I think her strong spirit and good attitude really helped her throughout her HD journey. Mom never complained but was such a trooper. Thank you for sharing and best of wishes to you and your wife!