Columns

At around 1 a.m. on Nov. 1, 2019, my aunt was pronounced dead. She had been waiting with her son in their car outside their house for a storm to abate when a tree fell on the car. Fortunately, my cousin was unharmed.  My aunt had…

For a time following my diagnosis as gene-positive for Huntington’s disease (HD), I avoided elderly people. The mere glimpse of a wrinkled hand was a reminder that I was going to develop Huntington’s someday, and that was something I was trying to forget. Recently, my husband and I attended our…

So which is worse: a long, drawn-out illness or a sudden, unexpected death? As the caregiver of a loved one with Huntington’s disease, I’m dealing with someone who is going to be suffering for a number of years. What my wife, Jill, will endure will not be a walk…

While traveling to a recent event on the T, greater Boston’s public transport system, I felt as if I were in a generic movie about a city-dwelling 20-something. I love living in Boston. While it is not as big as Chicago or New York, after…

Author’s note: This column is for anyone with Huntington’s disease or their family and friends. Dear Huntington’s community: Many of us don’t know each other, but we are bound by our suffering, heartache, pain, sorrow, and grief. And also by our hope, love, and mercy. We are linked together by…

The first time I met Jill’s father was interesting. I hadn’t met someone with Huntington’s before, but Jill had told me all about it. Huntington’s was a movement disorder, and she had a 50 percent chance of inheriting it. I researched Huntington’s before meeting Jill’s father, but seeing the…

Some moments are so perfect that you wish time would stop so that some part of you could live in that moment forever. These moments can be significant milestones, such as receiving word that you’ve been accepted into your dream school or hearing that you landed the job…

We live in a golden age of communication with many ways to talk to each other — email, text, and if you’re old like me, by phone. We have many chat choices, but I want to focus on one aspect by asking you a question: How do you end conversations…

I was recently invited to talk about my column on Help 4 HD Live!, a weekly podcast for the Huntington’s disease community. The host, Lauren Holder, asked me how the revelation that I am a gene carrier has affected my relationships. I told her I…

Every time we visit my dad, we go for a walk on the beach. On a recent cool September afternoon, the four of us wandered along the water’s edge, poking at rocks and admiring the ripples in the sand. My dad was wearing his green fleece jacket, jeans, and a…