Columns

First in a series. I wanted to write a positive column this week about the strength and courage my wife has displayed over the last few months. She has, and I will — but not this week. In fact, welcome to the first of two parts about a topic that…

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…

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…

(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…

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…

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…

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…

Exercise and physical activity may benefit patients with Huntington’s disease (HD), a new review study shows. The study, “Physical Therapy and Exercise Interventions in Huntington’s Disease: A Mixed Methods Systematic Review,” appeared in the Journal of Huntington’s Disease. Significant research shows that exercise and physical therapy improve the…

This week marks the launch of the “7,000 Mile Rare Movement,” a nationwide effort to raise money for research into the 7,000 known rare diseases that afflict at least 30 million Americans. The campaign kicks off Feb. 1 and culminates with Rare Disease Day on Feb. 28. Organized by…

Neurofeedback training may increase brain connectivity in patients with Huntington’s disease, possibly improving behavior and movement abnormalities, say British researchers at University College London. Their study, “Stimulating neural plasticity with real-time fMRI neurofeedback in Huntington’s disease: A proof of concept study,” appeared in the journal Human Brain Mapping.