Where do you go to find support and information about Huntington’s disease (HD) when you need it most? This question will certainly receive a plethora of answers. Having been part of the Huntington’s community for 25 years, I’ve utilized many different options based on my needs. In today’s world of…
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Several days ago, my wife, Jill, and I got a call from our daughter, Alexus. She wanted us to know she was getting two new cats. Alexus and her boyfriend just moved into a new home with the two cats she already owns. Because my wife and daughter…
The interaction between FAN1 and MLH1 — two DNA repair proteins known to be genetic modifiers of Huntington’s disease — protects against further expansion of disease-causing CAG repeats, according to a study using human and mouse models of the disease. Specifically, this interaction prevents MLH1’s recruitment to a DNA…
Earlier this year, I wrote that I was dealing with attention deficit hyperactivity disorder (ADHD), but didn’t realize it until my wife, Jill, pointed it out to me. Today, with her permission, I’m turning the spotlight on her. My wife has always admitted that she suffers from ADHD,…
In late July, before my nephew, Dylan, moved to the Georgian capital of Tbilisi, in the Caucasus region, for several months, I played several songs for him while we were in his car. One of them was a live version of “Fragile” by Sting. I know Dylan’s taste…
Getting a new treatment to people with rare conditions like Huntington’s disease is difficult. It takes lots of intelligence about a specific topic and immense time and energy. It requires funding to fuel the time and energy of those intelligent people. It depends upon a correct hypothesis that is executed…
Huntington’s is a strange and deadly disease. It’s not like cancer. Only 5-10% of cancer is hereditary, and what’s passed down is the abnormal gene that can lead to cancer, not the cancer itself. It’s not like heart disease. Certain risk factors, such as high cholesterol, can be…
For more than two years, I have shared my family’s journey with Huntington’s, including learning about the disease, living through my wife and daughter testing gene-positive, and working to accept their diagnoses. This time, I want to share some advice from Jill, my wife: Let go of people who are…
A soundtrack has been playing in the back of my mind for weeks now, ever since I last saw my wife, Jill. Following are some of the songs that have been on my mental playlist: “So Far Away” by Dire Straits “So Far Away” by Carole King (different…
My wife, Jill, and I celebrated our wedding anniversary last month. We like to joke that we don’t keep track of the years because it seems like yesterday when we got married. Some years, as a gift, I like to write her something romantic or funny. This year, I decided…
Recent Posts
- 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
- 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