I recently experienced two occasions of complete helplessness. The first involved my dog, Baby Girl. She has big ears, a normal characteristic of cocker spaniels, which often get infected. The combination of infection and a buildup of earwax sent Baby Girl and me to the veterinarian. Baby…
Columns
In my previous column, I talked about the day I received my diagnosis. I got through the following weeks by telling myself that nothing in my life had changed, and that I had no choice but to move forward. I knew time was not going to stop…
Thank You, Michael J. Fox
My husband and I were standing in a line of hundreds of people waiting to meet Michael J. Fox, one of the stars of the “Back to the Future” trilogy of movies. All around us were adults dressed up as their favorite comic and movie characters. We had…
Caregiving is an honorable position because it involves a lot of love. It also includes questions that begin with, “What if?” As you may know, my wife was diagnosed with Huntington’s disease last year. Right now, life is “good.” I put that word in quotation marks because her symptoms…
My wife and I don’t argue often. Here’s why: When we started dating, she shared with me her brilliant idea of a happy marriage. Jill asked me, “Do you want to be right or do you want to be happy?” I often choose happy. As my family knows, sometimes I…
I mentioned the day that I received the results of my genetic test in my first column. It was a Friday. I had been told to make plans for that day, because not knowing what you’re going to do can contribute to stress. However, I didn’t arrange…
Bear with me as I make an analogy. It’ll make sense in a moment. My wife, Jill, now sees genetic testing as the equivalent of a GPS. When you need to find out what illnesses run in your family, all you have to do is turn it on. Once…
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…
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”…
Recent Posts
- 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
- Oral Huntington’s treatment aims to slow disease progression
- Accepting help from my loved one with HD is a lesson in partnership
- Understanding how Huntington’s disease affects my cognition
- Guest Voice: We hold onto hope while fighting for new treatments