I began this column about seven months after my wife, Jill, discovered she was gene-positive for Huntington’s disease (HD) in 2018. Every week since then, Jill and I discuss what I should write about, and this week was no different. As we brainstormed, Jill asked me a couple…
Shouting is a fantastic way to get someone’s attention. That’s why I propose we shout to get the attention of the U.S. Congress. Because May is Huntington’s Disease Awareness Month, my wife, Jill, who is gene-positive for Huntington’s disease (HD), came up with a video challenge to raise awareness…
Ever since my wife, Jill, was diagnosed with Huntington’s disease in 2018, grocery shopping has became increasingly difficult for her — that is, until she discovered the power of noise-canceling headphones. Here’s what makes shopping difficult for her: People constantly invade her space, make a lot of noise, and…
When I share with others that my wife, Jill, has Huntington’s disease (HD), I often receive a blank stare in return. Because it’s a rare disease, most people have never heard of it. When I tell them how terrible it is, they usually respond with expressions of sorrow. I…
The weather where I live in Maryland has been cold, gray, and rainy lately. A steady diet of warm, sunny weather remains a distant memory. The full glory of spring is on hold, as many trees and flowers have restrained themselves from blossoming into a full palette of colors. Days…
I recently shared with my wife, Jill, a saying I read in a store: “A smile and some kind words can really change someone’s day.” Jill smiled and said she knew the power of that saying because she had witnessed it years ago. The story she told me unfolded during…
My wife, Jill, works from home doing freelance jobs. Because she works remotely, she can watch television during the day from the comfort of our living room. The recent confirmation hearings in the U.S. Senate for Supreme Court nominee Judge Ketanji Brown Jackson kept Jill transfixed as she pondered…
What happens when you mix the following events together: the war in Ukraine, climate change, rising gas prices, supply chain issues, and a pandemic? It’s a recipe for a rising tide of anxiety. Scroll through social media or peruse any of the major news outlets, and the steady drumbeat…
As everyone who reads this column knows, Huntington’s disease (HD) is a devastating illness for those who test positive on a genetic test. But it can be equally terrible for family members who test negative. I’m referring to survivor’s guilt, which happens when someone feels guilty for surviving a…
Recently, my mother-in-law invited her daughter, Jill, to be part of a Zoom call with a Huntington’s disease (HD) support group she belongs to. One of the guest speakers was Patty Conlon, a clinical research coordinator at the University of Pittsburgh Medical Center’s (UPMC) Department of Neurology. Conlon…
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