Why my wife is so good at explaining Huntington’s disease
Her approach is both compassionate and pragmatic
My wife, Jill, has a brilliant way of making complex things simple. She’s what I call an “explainer extraordinaire.” She has a gift for taking in information, processing it, and then breaking it down in a way that’s easy for anyone to understand.
Her gift stems from the mindset of trying to explain things to others as if they were 5 years old. This skill has been especially valuable as she navigates the complexities of Huntington’s disease, a condition she inherited from her father. Huntington’s is a degenerative neurological disorder that can be daunting to explain, but she’s developed a wonderful approach to discussing it with others.
Jill understands the weight of her words when she reveals her condition. She’s seen firsthand how people can become overwhelmed when confronted with the harsh realities of Huntington’s. In response, she’s crafted a gentler method of communication, one that educates without alienating.
Keeping them engaged
Her approach is both compassionate and pragmatic. When explaining Huntington’s to those unfamiliar with the illness, Jill carefully chooses her words, softening the impact while still conveying the essential information. She recognizes that an abrupt, unfiltered explanation can sometimes cause people to shut down emotionally, hindering their ability to understand and empathize.
Jill’s strategy isn’t about sugarcoating the truth. Rather, it’s about creating an environment where people feel comfortable asking questions and learning more. She believes that by presenting Huntington’s in a more approachable manner, she can foster greater awareness and understanding in our community.
This approach has been incredibly effective. People who might have otherwise recoiled from the topic now engage in meaningful conversations about the disease. Her openness, tempered with sensitivity, has opened doors to support and connection that might have remained closed.
As her husband, I’ve witnessed the positive impact of Jill’s approach firsthand. I’ve seen how her thoughtfulness inspires others to be more open and supportive. She has a way of making everyone feel included and valued, even when discussing something as challenging as Huntington’s. Her ability to educate others about it while maintaining their comfort is a testament to her strength and compassion.
In doing so, she not only helps others understand Huntington’s better but also maintains her own emotional well-being in the face of this formidable disease.
Jill’s journey with her disease has been undoubtedly challenging, but her can-do spirit and thoughtfulness continue to inspire me every day. Her approach to explaining Huntington’s is a reminder that, even in the face of adversity, kindness and clarity can make all the difference. By sharing her story and educating others, Jill is not only helping herself but also creating a ripple effect of understanding and empathy that extends far beyond our family.
I love how this is another example of Jill’s remarkable ability to navigate the most difficult situations of our lives with grace, humor, and compassion — and even a 5-year-old could see that.
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
Ian Marty
I admire Carlos’ optimism and pragmatic approach to Huntingtons. Sadly for my wife Barbara and I, optimism is no longer a factor. Barbara and I met on a blind date in 1996. We dated for two years and got married in 1998. She was funny, sensitive, and intelligent. She had her bachelor’s degree and was working as the economic development manager for a city in California. We have had a wonderful almost 30 years together however Barbara is now towards the end of her battle with Huntingtons. We tried all the studies, and even took chunks from our retirement to try stem cell treatments in Mexico, to no avail. Barbara’s father had Huntingtons. Barbara’s sister passed away from Huntingtons in 2018. Barbara started showing symptoms in 2014. It’s been a steady decline since then. When she was still using a walker she fell and fractured her hip. I saw how she declined in the rehab facility and became determined to keep her at home for as long as I can. I was blessed to find a job that allows me to work remotely.
She is now confined to a wheelchair. I am her full time care giver. I change her, wipe her, feed her and juggle keeping my full time job while doing everything around our house. Mentally she is like a five year old these days. Our conversations consist of “diaper” or “I’m peeing” or “I’m pooping.” It’s a grueling day to day grind with the days blending together. I often don’t know if it’s the weekend or a weekday. The only difference is on the weekends I’m not on my work computer but I am frantically trying to get as many chores accomplished as I can. We used to love to travel but now with her incontinence and her aspirating when she eats, we are confined to our home. On the rare occasion I get to see friends, they often notice saliva or drool on my shoulder. That’s from when I pick Barbara up to put on her diaper or clean her, her head and mouth rest on my shoulder. I struggle to remember how she used to be. Now she slurs her speech, is demanding, unappreciative, and mostly devoid of emotion. She is a shell of the beautiful, funny wonderful woman I married. It’s a day to day emotional roller coaster. Some days I struggle to get Ensure down her and she barely says anything. I wonder is this it? Is this where we go to the next phase? But then she will rally back. So all I can say is savor the time that you and your wife Jill can still have meaningful coherent conversations. Sadly with Huntingtons there is nothing but a dark emotionally draining tunnel with no light at the end.