I mentioned the day that I received the results of my genetic test in my first column. It was a Friday. I had been told to make plans for that day, because not knowing what you’re going to do can contribute to stress. However, I didn’t arrange…
Always Looking Forward – a Column by Alexus Jones
As you may have read in a previous column, I decided to get tested for Huntington’s at 22 years old. For me, it was a no-brainer. I wanted to get tested because I can’t handle unknowns. They vex me. I have obsessive-compulsive disorder, so…
“How are you?” is one of the most common greetings I hear. It is ingrained in the culture and is distinctly American. Unless the person is a close friend, the anticipated answer is “good” or “fine.” If you are feeling terrible, “a little sick”…
My mother is right about pretty much everything, so much so that I sometimes think that she can see into the future. So, whenever she is wrong, I feel the urge to take out my phone and record her admitting her mistake. Those occasions are…
These Are the Memories That Last
Today, I was opening a straw for my drink the way I always do: I rip off a small section toward one end, then remove the longer end of the wrapper. While holding the shortened wrapper, I insert the bare end of the straw into the cup…
I decided that I did not want to have children so long ago that I no longer remember it. At the time, I thought I only had a 25 percent chance of having Huntington’s disease. Since then, I have come up with plenty of…
Growing up, the fact that my grandfather had Huntington’s disease (HD) wasn’t a secret. It was the reason that, when we drove to Pennsylvania to see my family, we had to pull over to feed him through a tube. It was also why I watched the man…
Recent Posts
- What the holidays mean when living with Huntington’s disease
- $12M grant will back first trial of stem cell therapy for Huntington’s
- A tribute to the kindness of strangers in life with Huntington’s
- How to support someone who is planning for future care
- Antipsychotics improve functional capacity, independence in HD
- Despite dwindling resources, hope endures among researchers
- The ‘invisible’ symptoms of Huntington’s that people don’t see
- Genetic variant delays Huntington’s onset by up to 23 years: Study
- Watching Huntington’s switch roles in our marriage was jarring
- The gift of community is what I’m most thankful for this year