Are You an Open or Closed Book?

I am a writer, and as such, I like to think of people as books. Either you are an open book or a closed one. Let me explain. My wife, Jill, and I have so many things in common that sometimes I forget that we don’t have a few things…

In a newly published set of guidelines, experts give suggestions for the management of some of the behavioral symptoms of Huntington’s disease. By making these guidelines available to both specialists and non-specialists, the hope is that better care and support can be given more consistently to Huntington’s patients and their…

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…

Narrative interventions can help provide support to individuals who are carriers of HTT gene mutations linked to Huntington’s disease, a study shows. The study, “Improving follow up after predictive testing in Huntington’s disease: evaluating a genetic counselling narrative group session,” was published in the…

A newly developed smartphone application, called the Neural Impairment Test Suite app, can run a series of tests and calculate the probability that a user is displaying early symptoms of Huntington’s disease. Developed by a group of researchers at the Kaunas University of Technology (KTU) in…

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…

RaDaR, the catchy new name for the U.S. government-run Rare Diseases Registry Program, aims to help patient advocacy groups with limited resources build their own disease registries. The site was developed by the National Center for Advancing Translational Sciences (NCATS), a division of the National Institutes of…

Exercise training may help improve cardiovascular and mitochondrial function in patients with Huntington’s disease, with little to no treatment-related adverse events, a review study suggests. The study, “Exercise in Huntington’s Disease: Current State and Clinical Significance,” was published in the journal Tremor and Other Hyperkinetic Movements. Huntington’s…

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.