Columns

My wife, Jill, and her phone are like Siamese twins — attached all the time. At least, that’s how it seems. Jill, who has Huntington’s disease (HD), stares into her phone for hours when we are at home, playing puzzle, tile, and problem-solving games such as Tile Master,…

I’ve written before that I was unsure if I was ready to get involved in Huntington’s disease community events. It’s been difficult for me to determine if the emotional cost is worth the risk. A few months ago, I finally…

Getting the Huntington’s disease genetic test is a major life decision that weighs heavily on a person socially, emotionally, psychologically, and physically. I’ve written about the genetic testing process and its ramifications in many of my previous columns. But what if a genetic test didn’t only tell you your…

I recently gave a presentation at an event, during which I explained that my wife and daughter have Huntington’s disease (HD). I then showed a video that illustrated the devastating toll the illness can take on a gene-positive person’s mind and body. After the presentation ended, I wasn’t surprised…

This week, my wife, Jill, bought meals from HelloFresh, a company that sells kits with the ingredients and the recipes to cook at home. Apparently, because of the pandemic, something known as “cooking fatigue” has led many people to tire of the repetitive chore of starting from scratch.

I recently received an email from Kelli Yoder, the communications manager at Adira Foundation, an organization whose mission is to “invest in better lives for people with neurodegenerative diseases.” She wrote that the foundation had enlisted the help of StoryCorps, a…

As I wrote in a previous column titled, “An Abundance of Huntington’s Disease Info Awaits at Upcoming Virtual Conferences,” there are many ways to learn about the latest and greatest happenings in the HD community. I attended last month’s Huntington’s Disease Youth Organization’s International Young Adult Virtual Congress,…

Buried in my brain is a Proustian memory. It occurred during my elementary school graduation ceremony when the principal played the song “The Way We Were,” by Barbra Streisand. Any time I hear that song, I am transported back to hearing Streisand’s voice: “Mem’ries/ Light the corners of my…

I learned about my mother’s Huntington’s diagnosis and my own risk during my senior year of college. I was devastated by the news, which exacerbated my anxiety. At the time, I had a therapist who told me to write down all of my fears and anxieties…

More than half of the people with rare diseases and their caregivers, asked in a survey, were undecided or less than willing to be vaccinated for COVID-19 if a vaccine was approved under emergency use authorization instead of the routine process, the EveryLife Foundation for Rare Disease reports. These findings…