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The Monsters Under the Bed

“The Talk” has a very different meaning to most people than it does in our home. When our daughter was born, my wife, Jill, had a very clear wish that we would always be open and honest with our daughter about things. By “things,” Jill meant most everything. She wanted…

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…

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…