I spent about two months weighing the pros and cons of getting bangs again. On one hand, bangs work well with the shape of my face and eyes. On the other, I’d have to wash them every morning. They’re are a lot of work, and getting them is a commitment…
Always Looking Forward
— Alexus Jones

I’ve found that having a parent with Huntington’s disease makes you value every moment with them, even in unfortunate situations. For instance, normally I wouldn’t volunteer to go on a road trip from Massachusetts to Illinois, but I would for my mother. As I’ve previously written, my mom was…

My Support Network Keeps Me Sane
During college, I always joked with my friends that I would drop out of school to open a bar in Canada (I prefer their healthcare system). MIT was very stressful, and my reaction to unenjoyable situations is to want to escape. Based on…
My grandmother and my mom taught me how to cook. Growing up, I would make apple pies with my grandmother for the holidays, and I learned fractions by doing recipes with my mother. It amazes me how much of our lives is centered around what essentially is our…
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…
Pulled Between Two Lives
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’…
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…
This past Monday night, my boyfriend and I cooked an amazing meatball dish with garlic bread on the side. (No, I will not disclose whether I used premade meatballs and garlic bread.) We paired the dishes with a bottle of sangria we’d bought for taco night this past…
Thursday, Oct. 17, 2019, started off like most weekdays for me. Working in consulting, there are always ebbs and flows. Some days I’m extremely busy, other times I’m not. That day was one of the latter. I was having lunch with a co-worker when he…
For many people I know, including me, COVID-19 started out as a joke. It shares the same name as a beer, for example. But then, the Chinese city of Wuhan was quarantined. That was when I…
One summer when I was in middle school, my parents and I went to Florida to visit family. On a gorgeous day (well, as much as wet heat can be gorgeous during the summer), my mom, dad, and I went to Marina Jack…
Huntington’s Is Not My Secret
A few months ago, my boyfriend’s Philosophy of Technology class planned a debate about the ethics of gene editing. I told him that I was a perfect case study to bring up since gene editing opens avenues for a potential Huntington’s disease cure.
This week, I read two articles that were sent to me describing scientific breakthroughs regarding possible treatments for Huntington’s. The first described a case study recently published in the journal Psychiatry and Clinical Neurosciences. It…
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- Watching Huntington’s switch roles in our marriage was jarring