When Jill and I lived in Florida, we loved being outside, going to local parks, walking on the beach, and hanging out with friends and family. Life was good. Then we moved to the Midwest, and we went to a city where we had no family and knew no…
Columns
Growing up, the fact that my grandfather had Huntington’s disease (HD) wasn’t a secret. It was the reason that, when we drove to Pennsylvania to see my family, we had to pull over to feed him through a tube. It was also why I watched the man…
Is It a Hobby or an Obsession?
I am standing at the end of the beauty aisle at our local grocery store. I’m watching my wife, Jill, look at boxes of press-on nails — again. I think back to when she was my girlfriend, back to when she was someone who said she didn’t have any hobbies,…
I made it down the long, sterile hallway and past the waiting room before bursting into tears. My husband gathered me into his arms as I stood there sobbing, unable to move. His shirt quickly became stained with my tears. We paid no attention to the dinging bell and the…
It’s All About Respect
Aretha Franklin sang about it. Rodney Dangerfield joked about it by saying he never got any. The Boston Red Sox got it after finally winning the World Series again in 2004. The “it” I’m referring to, of course, is respect. A recent trip to the airport by…
Do you recall the Apollo 11 mission that took place July 16-24, 1969? My wife, Jill, likes to remind me that she remembers reading about it in a history book. This summer, we will mark the 50th anniversary of the first humans landing on the moon. That may not…
My daughter recently graduated from college. As the date approached, my wife, Jill, and I grew increasingly excited. Jill became more focused on all the things that we needed to do. Jill is a planner, so she starts out by making lists. These lists are then accompanied by yellow…
The internet has transformed how we access information and learn new things. With the press of a button or a swipe on a screen, we can be instantaneously connected to limitless information about whatever topic is on our mind. This effortless accessibility can have both positive and negative consequences. Online…
When something attacks you, having a good defense to thwart the attack is an invaluable tool in staying alive. In some ways, because they both have been diagnosed with Huntington’s disease, my wife, Jill, and our daughter are under attack. This disease aims to attack their minds and bodies,…
Many occupations are described as being the most difficult job in the world: Firefighting, mining, roofing in a heatwave. Yes, those examples are full of their own risks and challenges, but they are trumped by the roles we take in life that aren’t “jobs” at all. Parenting is an example,…
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