“My advice to other disabled people would be, concentrate on things your disability doesn’t prevent you doing well, and don’t regret the things it interferes with. Don’t be disabled in spirit as well as physically.” — Stephen Hawking Huntington’s disease affected both my dad’s and my brother Gavin’s…
Columns
I’ve come to a realization that has impacted my viewpoint about the importance of voting and advocating for political candidates who prioritize healthcare. It was prompted by my wife Jill’s diagnosis of Huntington’s disease (HD) and the challenges we’ve faced navigating the healthcare system as we deal with…
“The waste of money cures itself, for soon there is no more waste.” – M.W. Harrison The cognitive damage caused by Huntington’s disease has strongly affected my brother, Gavin. It’s part of the reason he is unable to manage his financial affairs on his own. We saw…
Recently, I’ve found myself grappling with a complex mix of emotions. On the one hand, I’m filled with admiration for the incredible strength and positivity that my wife, Jill, exudes every day in the face of Huntington’s disease (HD). On the other hand, there’s a lingering sadness…
“In sickness and in health, for as long as we both shall live.” These words took on deeper meaning for our family recently after I underwent genetic testing for Huntington’s disease. Huntington’s disease took our dad’s life in May 2020, and my brother, Gavin, was…
As regular readers of this column know, I love my wife, Jill, with all my heart. I love her simplicity. I love her sense of humor. And of course, I love that she’s the mother of our wonderful daughter, Alexus. Still, I have to admit…
“It’s your road, and yours alone. Others may walk it with you, but no one can walk it for you.” — Rumi, scholar and poet Huntington’s disease has so far affected four generations of our family. We lost our dad to Huntington’s in May 2020 and…
If I were to ask people what’s due on April 15, most would say “taxes.” In my 15 years of marriage to my wife, Jill, I haven’t had to worry about that deadline before. Filing our taxes has been Jill’s job, as she’s always been able to read…
“Of all base passions, fear is most accursed.” — Joan La Pucelle (Joan of Arc), in Shakespeare’s “King Henry VI, Part I” Huntington’s disease has taken the lives of my dad, grandfather, and great-grandmother. My brother, Gavin, was diagnosed with it in January 2022, at the age…
When, on a recent Friday night after I’d worked a 60-hour week, my wife, Jill, asked me if I wanted to go to breakfast the next morning, my first instinct was to say no. Instead, I said I’d love to go. The reason was simple: I love Jill…
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