As you may have read in a previous column, I decided to get tested for Huntington’s at 22 years old. For me, it was a no-brainer. I wanted to get tested because I can’t handle unknowns. They vex me. I have obsessive-compulsive disorder, so…
Columns
We can all agree that healthcare is not perfect. Even with insurance coverage, a trip to the doctor can be expensive. Travel to and from appointments can be time-consuming and costly, especially for someone with a disability. My wife, Jill, was diagnosed with the Huntington’s gene, just like her father,…
“How are you?” is one of the most common greetings I hear. It is ingrained in the culture and is distinctly American. Unless the person is a close friend, the anticipated answer is “good” or “fine.” If you are feeling terrible, “a little sick”…
There Are Many Ways to Be Brave
I was alone in my flower shop, surrounded by a rainbow of fresh flowers and bright orange walls. The warm summer sun filtered through the floor-to-ceiling window. Despite the beauty of my surroundings, my mind was at the bottom of a deep, black pit, and I was struggling to get…
Does Fear Freeze or Fuel You?
Zombies, spiders, losing your job. What is your greatest fear? Mine used to be drowning, but not anymore. My biggest fear now is losing the woman I love and adore to Huntington’s disease (HD). Over the last year, our family has had its ups and downs. The gene-positive diagnosis of…
My mother is right about pretty much everything, so much so that I sometimes think that she can see into the future. So, whenever she is wrong, I feel the urge to take out my phone and record her admitting her mistake. Those occasions are…
Have you ever been on a plane with a couple and their small child? You hope the child falls asleep or, at the very least, behaves. At some point during the flight, it’s not uncommon for children to whine and fidget, cry and hit the seat, or insist on getting…
These Are the Memories That Last
Today, I was opening a straw for my drink the way I always do: I rip off a small section toward one end, then remove the longer end of the wrapper. While holding the shortened wrapper, I insert the bare end of the straw into the cup…
Earlier this year, I heard of an opportunity to write a column for Bionews Services. As many of you know, my wife, Jill, was diagnosed with the Huntington’s gene. Before I applied, I wanted to discuss it with Jill. I have shared in the past that my…
I decided that I did not want to have children so long ago that I no longer remember it. At the time, I thought I only had a 25 percent chance of having Huntington’s disease. Since then, I have come up with plenty of…
Recent Posts
- It’s OK to reach out for help during the February slump
- Huntington’s treatment safely slows disease over 9 months in early trial
- A new puppy gives my gene-positive wife a sense of purpose
- Toward a better understanding of anger as a symptom of Huntington’s disease
- Actor Will Forte shares family story in Teva awareness campaign
- Finding ‘space in the middle’ to deal with life’s challenges
- What a compassionate reset looks like in life with Huntington’s
- Ingrezza engages with therapeutic target more strongly than Austedo
- Anticipation of a possible new clinical trial has us holding on to hope
- What caregiver burnout is really about — and what you can do about it