Facing HD’s cognitive symptoms while living life to the fullest
Embracing opportunities amid fears of the harsh realities of Huntington's
Recently, I’ve found myself grappling with a complex mix of emotions. On the one hand, I’m filled with admiration for the incredible strength and positivity that my wife, Jill, exudes every day in the face of Huntington’s disease (HD). On the other hand, there’s a lingering sadness and frustration as we confront the harsh realities of this relentless rare illness.
Jill has always been a beacon of positivity in our family. Despite the challenges that living with HD brings into our lives, she continues to radiate warmth, love, and unwavering optimism. Her resilience is nothing short of remarkable.
But beneath Jill’s brave exterior lies a deep well of emotions that she often struggles to express. A future that includes brain changes that lead to cognitive decline weighs heavily on her mind, and there are moments when the darkness of HD threatens to overshadow her bright spirit. It’s during these times that I see glimpses of her vulnerability, and my heart aches to know that I can’t simply wave away her fears and concerns with a magic wand.
As Jill’s caregiver, I’m aware of the delicate balance she must maintain between acknowledging the reality of her condition and holding on to hope for the future. It’s a tightrope walk between realizing the challenges we face and refusing to let them define us. And while we strive to focus on what’s good in life and find beauty in the small moments, there are days when the weight of it all feels too heavy to bear.
The value of making memories
Despite the ups and downs, Jill remains determined to live her life to the fullest. Whether it’s traveling to see our family, being an advocate for rare diseases, or relishing the simple pleasures of everyday life, Jill refuses to let HD dictate her happiness.
Jill’s enthusiasm for life has become a driving force for me to plan more things for us to do together. We’ve attended concerts, comedy clubs, musicals, baseball games, and other activities that Jill would’ve said were too expensive before her diagnosis. I would’ve agreed with her then, but we both know the memories are far more valuable than the money we spend.
In many ways, Jill’s journey serves as a poignant reminder of the power of resilience. She’s a testament to the fact that, even in the face of adversity, it’s possible to cultivate joy, gratitude, and love.
As we navigate this journey together, I’m thankful to walk by Jill’s side, to hold her hand through the highs and lows, and to bear witness to the incredible strength of her spirit. And though her future will involve a lot of suffering, I take comfort in knowing that, as long as we face it together, there’s nothing we cannot overcome.
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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Ryan Van Dyke
Has she considered doing Sage trial?
Kathy Morgan Sihan
Dear Mr. Carlos,
First, I want to congratulate you for staying. Most spouses leave. They don’t want the burden. You sir have outdone yourself.
I'm very proud of you. I’ve been reading your posts for quite awhile.
I understand what Jill, your daughter and you are going through.
I also have HD. I was diagnosed in 2008. I have 42 CAG repeats, and so does my oldest son. He just turned 30. I have 2 older sisters. My oldest sister has HD and 42 repeats. I would like to know how many repeats Jill has. I’m 54 years old. My mom had HD, she had 9 siblings. All but one had the disease. I’ve witnessed and experienced this disease all my life. It's a nightmare. I’m currently using this app to help me find my words. If I didn’t use this app, I wouldn’t be able to text. My thoughts are everywhere, unable to focus and organize. I have symptoms as long as two arms. I used to be my mother's, most of my aunts and uncles caregiver. Now, my son is my caregiver. I’m certain you are knowledgeable about HD. I believe transparency is essential. If you have any questions about her symptoms please ask. There are so many things that happen that aren’t written down. Forgive me for being blunt. It’s this disease.
Your family is in my prayers.