Alexus writes about her experience with Huntington’s disease. Alexus is all too familiar with the disease: her grandfather and mother have it, and she recently learned she does, too. Alexus graduated from MIT with a bachelor’s in mechanical engineering and minors in health policy and management. Currently, she’s working in life science consulting in the Boston area.
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…
One afternoon in May, I got a call from a number I didn’t recognize, and I rejected it immediately. Given the number of spam calls today, I wouldn’t normally log that in my memory, but then I received a voicemail from the hospital where…
Last weekend, I had a bunch of newly vaccinated friends over to help me paint my new condo. My partner and I had just closed on it two days earlier, and I was excited to make the place feel like our own. We finished the entire condo in…
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…
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…
Having a parent with Huntington’s disease influences my life in many ways, most of which I’m likely unaware of. It influences everything from my plans for the future to how I view the world. My mom raised me to be independent (like that…
I like to keep things organized. Everything should have a place, even if it’s on the floor next to my bed, like my clothes. Even my problems have a place: Each one has a box. No, I don’t have a box sitting around in my…
When I was a sophomore in college, I debated going blond. It was January, and every winter, I usually cut or dye my hair. I always need a change of pace during winter. Normally, I go with red or black, and my mom can easily dye my hair.
On Saturday, the last season of the Netflix series “The Good Place” began streaming. To me, it was the best ending of any TV show I have ever seen. My boyfriend and I cried. I’ll try to avoid spoilers, because…
This week, I have my first therapy appointment in a while. I hope therapy will give me a structured place to talk about Huntington’s with someone not impacted by it. While my coping strategies have worked so far, I would benefit from someone neutral to talk to. Plus,…
Get regular updates to your inbox.