Columns

A Letter to My Grandmother

My grandmother died from Huntington’s disease (HD) complications in 1987. I was 13 years old at the time, so my memories of her are few and limited to a time in her journey when she was more advanced in her symptoms. I have no personal recollections of what she…

Our Family’s Bad Dream Won’t Go Away

Family traditions often include fond memories. For instance, President John F. Kennedy’s family tradition involved sailing a 25-foot sailboat called the Victura. The open sea, the wind at your back, the blue skies, the sun sparkling off the water — who wouldn’t look back at those memories and not smile…

The Huntington’s Disease Headline I Can’t Wait to See

(Photo from James Pollard, Personal Collection) The above New York Times clipping, dated March 24, 1993, reports breaking news that was immensely important for the Huntington’s disease community. Even today, 26 years later, the significance of a piece of HD news has never surpassed this. Not yet anyway. The…

Wondering and Worrying: The Months Before Diagnosis

I imagine some of you know people who are experts at worrying. Pick any situation and these worrywarts will rev up with a highlight reel of catastrophic scenarios usually involving pain, blood, and a depressing outcome. For the record, I’m the opposite of that kind of person. I fall into…

Embracing My CAG Score

Sometimes when you meet a person, there’s an immediate connection. Like kindred spirits, you become instant friends. When I attended my first Huntington Society of Canada National Conference, I met someone like that, and my mind opened to a new way of thinking. At the time, I was still…

Welcome to ‘Gene Positive’

When I was a child, my mother would tell me that if I didn’t eat my carrots, I would go blind. I do wear glasses now, so maybe that was partially correct. But it’s more likely that she was either misinformed or just trying to get me to eat my…