Battling Heat and Huntington’s Disease With a Positive Attitude
A hot day won't slow down columnist Carlos Briceño's wife, Jill
Because my wife, Jill, and I live less than half an hour away from Washington, D.C., commonly listed as one of the 10 most visited cities in the United States, we like to play tourist and visit the nation’s capital on weekends as often as we can.
The last time we went, several weeks ago, the temperature hovered around 95 degrees F. Jill and I are very different when it comes to heat. I love hot days. When I walk outside and the pavement shimmers with heat, I feel like I’m walking into a big hug. Jill has a different reaction. When she gets hot, it makes her feel like a steak that’s being burned, a feeling she’s not particularly fond of.
She’s always been that way, but recently she’s been experiencing wild temperature swings. I planned a day that started off with breakfast at Jill’s favorite restaurant near Dupont Circle, and we ended up walking a mile to Georgetown, where an excellent Huntington’s Disease Society of America Center of Excellence happens to be located.
Because Jill is gene-positive for Huntington’s disease (HD), eating healthier and exercising are important to her, so we like to walk in the city. But on that day, the heat instantly became a — please pardon the pun — hot topic.
Jill thought about something her mother once mentioned to her. Her mom had heard that HD patients can have issues with body temperature regulation.
Jill looked it up on her phone and discovered her mom was right. There didn’t seem to be many studies about it, but she found a review published in the Handbook of Clinical Neurology that suggested a possible link between HD and thermoregulation, or an organism’s ability to maintain its body temperature, even when the external temperature is very different.
That made sense to me, but the knowledge didn’t make the day any cooler or less humid. During our walk, I noticed Jill’s normally fair-skinned face getting pink, then dark pink, then angry red. She’s not the type to complain, but at a certain point, I wondered if she should stop walking. I would go to the car, return, and pick her up, I offered.
She laughed.
“Of course not,” she said. “I’m battling HD. Do you think a little bit of heat is going to beat me? But I could use some water and a place to cool off when we get to Georgetown.”
An hour later, we entered a T.J. Maxx store, mainly so that Jill could enjoy the air conditioning.
As Jill and I walked, talked, laughed, and shopped, I was glad to see her feel more comfortable. At a certain point, I offered to get an Uber to take us back to our car in Dupont Circle, and she just looked at me.
“Carlos,” she said, “I’m having too nice a day with you while getting lots of exercise. Why would I want to stop experiencing that just because I’m hot and nauseous?”
She hadn’t told me about being nauseous. I looked at her and smiled. I stood on my toes — she’s taller than I am — and kissed her forehead.
She asked me what I was thinking.
“Jill,” I said, “Huntington’s disease has a formidable opponent in you.”
I love how resilient and positive she is, and, as much as I don’t want her to have HD, I know she will do everything in her power not to let it ruin her life.
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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Comments
Kathy Howell
Just want you to know I wait for this to come out. Makes Huntington’s into a real person perspective. Thanks for all you do.
Carlos Briceño
Thank you for sharing. Every column is written with care. Every week we share our lives hoping our readers are able to feel the love we have for each other. We are touched by your comment and we are grateful for you following us.
Hala Hall
My son, who is the end stages and is someone with severe uncontrollable (even though maxed out on Austedo dosage). Because of his extreme movement he is always hot, even when it’s the middle of winter and the furnace is off and we huddle around a space heater two floors away from him. ;->
Carlos Briceño
I am sorry for the pain HD has caused you and your family. It’s is unbearable to watch loved ones go through what you are experiencing but to have it hurt your child is devastating. Thank you for sharing your story. I understand how difficult it can be to accommodate someone and everyone else suffers. Have you ever thought of a window unit for his room so he has a place to go to cool off while the rest of the house is heated? Also, Jill found little personal fans that you can wear like a necklace to keep cool when we attended an outdoor event.