I have very little knowledge about cars — how they work, how they run, and most importantly, how to fix them. I need to find someone who does know how to fix my car if it ever breaks down. Since my automobile is such a vital part of my life,…
Columns
May is Huntington’s Disease Awareness Month in many parts of the world. It’s an excellent opportunity for those of us in the Huntington’s disease (HD) community to reach people who wouldn’t typically encounter this disease and share some understanding about the condition. There are many ways to raise…
Here’s the scene: My wife, Jill, and I are at Jill’s work. We’re on speakerphone with our daughter’s friend, who is at a hospital almost 1,000 miles away with three other friends and Lou, our daughter. (Lou is our daughter’s nickname.) The reason for the call is to listen in…
There is some evidence in the Huntington’s disease literature that suggests people with the gene may lack insight into how they have started to show signs of the illness. This terrifies me for several reasons, but for the focus of this column, I’ll discuss the possible effect this…
My wife, Jill, who has Huntington’s disease, is doing remarkably well. Most people in her shoes would be falling apart, but she is levelheaded about having it, and many are amazed when I tell them that she accepts her diagnosis. Think about that for a moment: She tolerates a…
It’s time for us to enter our Huntington’s disease (HD) time machine and travel back to the year 1872. It is here that we find Dr. George Huntington sitting in his clinic’s office handling a package. He runs his thumbs along the seam to ensure its closure, turns it…
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…
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…
Second in a series. Read part one. Based on the number of television commercials touting DNA testing, finding out information about one’s genes has become de rigueur these days. As I mentioned in my last column, however, when there’s the possibility of having inherited genes that might cause…
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…
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