Columns

The identification of the Huntington’s disease (HD) gene in 1993 opened doors for new scientific exploration. The HD community of families and researchers around the world were excited about what the discovery could mean. Since then, that knowledge has informed researchers about where to focus their studies. The…

While talking about family illnesses with friends recently, I sat back and watched people discussing cancer, dementia, and myriad other life-altering conditions. Everyone had a story to tell about taking care of someone with an illness or experiencing it themselves. I noticed that, after each person shared, the group moved…

Last week, I had an appointment with my family physician to talk about prostate health. Yes, I know, this is a Huntington’s disease (HD) column. Why am I bringing up my prostate? Come to think of it, this probably fits into the “too much information” category, but stay with…

My sense of time has shifted. Part of this change is age-related: I will be 55 this year. When I was younger, I thought about what the future might bring. My dreams seemed so far away then, causing me to feel impatient at times. I am less rushed these days.

One of the more tragic aspects of Huntington’s disease (HD) is how the symptoms can begin to take control of a person in their prime adult years. There’s no cure or effective treatment available to us yet, so it’s like those of us who are gene positive for…

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,…

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…