I’m sure the headline of this column made you look twice. No, that’s not a typo. You might be saying right now: “How could anything associated with Huntington’s disease make my life better?” I get it. I understand firsthand what a horrible condition Huntington’s disease (HD) is. It’s not…
Gene Positive - a Column by Steven Beatty
Sometimes it can seem like everyone wants to give you advice about how you should live your life or what you should do to feel and remain healthy. Now that I write this, you could say this column is doing the same thing! Here’s a quote that amused me: “I’ll…
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…
(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…
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…
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