I sat across from my wife, Jill, watching her organize her nail polish. When she paused, I could see the weight of her body language: She was slumped forward, which is unusual for her, as she usually projects positivity in everything she says and does. She was…
“I wake up panicking and find it hard to unclench the ball of anxiety tightening in my chest.” — Melanie Pearson, from her first blog post about caring for her brother with Huntington’s disease. I understand Melanie’s feelings. Huntington’s has also taken the lives of my dad, grandad, and…
Levels of glial fibrillary acidic protein (GFAP), a marker of damage to specific neuron-supporting cells, in the fluid surrounding the brain and spinal cord increase with the progression of Huntington’s disease, a study showed. Higher GFAP levels in the cerebrospinal fluid (CSF) were also significantly associated with more severe…
Our peaceful neighborhood was recently shaken by an unexpected tragedy. Our neighbors across the street, in the midst of renovating their roof, watched helplessly as a single spark from a power saw ignited a fire that caused extensive damage to their home. As I stood with my wife, Jill,…
Ingrezza Sprinkle, a new formulation of Ingrezza (valbenazine) that’s designed to be easier to swallow, is now available in the U.S, Neurocrine Biosciences, which markets the therapy, announced. Ingrezza Sprinkle comes in capsules that are meant to be opened and the contents sprinkled over soft foods like yogurt,…
As a caregiver to my wife, Jill, who is gene-positive for Huntington’s disease, I’ve learned that helping isn’t always as straightforward as it seems. Recently, as I watched her face scrunch up in frustration while she looked at her to-do list, I reminded her that she could…
“The brain is like a muscle. When it is in use we feel very good. Understanding is joyous.” — Carl Sagan A chance meetup last summer with a local in my community led to a slightly random conversation about brain donation. I was discussing a genetic test I…
The investigational gene therapy AMT-130 is slowing disease progression for people with early-stage Huntington’s disease, as well as lowering levels of neurofilament light chain (NfL), a marker of nerve cell damage. That’s according to two-year data from two Phase 1/2 clinical trials: one in the U.S. (NCT04120493)…
It’s been a hot summer so far, which isn’t the greatest weather for my wife, Jill, to deal with. She is gene-positive for Huntington’s disease, which causes her to have difficulty regulating her body temperature. But recently, a rainstorm was followed by a soft, summer breeze…
Huntington’s disease presents a complex range of behavioral, cognitive, physical, and psychological symptoms. It poses many challenges to families, friends, caregivers, and people who are living alone with this condition. Huntington’s has taken the lives of my dad, grandad, and great-grandmother. I tested negative for…
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