To this day, I have only talked to two younger people with Huntington’s who weren’t related to me. I know some resources could help me connect to others (like the HD Young Adult Conference), but I haven’t decided if I want to…
On May 21, 1992, MTV aired the first episode of “The Real World.” The introduction to the show went like this: “This is the true story of seven strangers picked to live in a house, work together, and have their lives taped. Find out what happens when people stop…
I have pink eye. Again. And I’m extremely happy I got it. I’ll get to why in a moment, but first some background. For the third time since March, the whites of my eyes are red and watery with occasional discharges that result in some crusting on my eyelashes.
If you’ve ever experienced an allergic reaction to something, you probably understand why the root word of misery comes from the Latin word “miseria,” which means wretchedness. My dog has been in a state of misery for the past two weeks due to an allergic reaction. We don’t know…
Working remotely, while slightly draining, has had its benefits. Being able to sleep in until the last possible second (and maybe sometimes slightly past that) and my ability to work anywhere are among them. That latter perk means I’ve been able to work from my parents’…
My husband and I were driving along a country road with no destination in mind. We needed to escape the city and our lives for the day. We drove past fields of tall, golden grass waving in the breeze, and turned down random roads that we happened upon. We cracked…
Reality bites. That was the name of a 1994 romantic comedy movie starring Winona Ryder and Ethan Hawke. It’s about four recent graduates finding out how difficult life can be when searching for a decent job and true love after college. In pop culture, that phrase eventually came to…
May is Huntington’s Disease Awareness Month. While I was starting to write this week’s column, my wife, Jill, received some devastating news: Her second cousin, Pamela Averman, had passed away from pneumonia on April 28. Because this is a Huntington’s disease column,…
The Rare Diseases Clinical Research Network (RDCRN) has opened an online survey to better understand how the COVID-19 outbreak is affecting people with rare diseases, their families, and caregivers. Survey questions cover a patient’s physical and mental health, supply of treatments, and access to healthcare, among other…
All of my friends know about my love of wine. The first summer after I turned 21 I was in Maine, and I spent many weekends traveling down to New Hampshire to tour vineyards. I especially love uncorking a strange wine, like PB&J or Choco-Straw…
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