Huntington's disease (chorea)
in Health ·
Larry Hill5 said:Some odd behavioral shifts and tremors started appearing three years ago. We got a medical diagnosis six months back. He’s on Eglonyl now, but I don't see any real improvement—if anything, he just sleeps more. He’s exhausted, lazy, to put it bluntly. He was always such a good person, and he still is, so I don't get how they link this to aggression... who knows what's ahead? The disease surfaced at age 50. How long has this miserable illness been part of your lives? What happens to the kids? Where are you getting treatment? Which specialists or alternative medications should we look into? I read somewhere that if you start treatment early enough, it doesn't have to be quite so fatal. Does anyone know about the CAG triplet count from genetic testing? If you know of anything that actually helps improve quality of life, please let me know.
As a family, we're holding up okay for now, but I haven't slept a single night. I can't even wake up without my mind racing.
The situation is actually much worse over here; we're seeing more people affected between the ages of 20 and 50, with symptoms often becoming obvious around 30. Because diagnoses come so late, the impact on children has been devastating. As for those CAG repeats, I believe they usually hit 50 for everyone, though I once read about a 13-year-old boy who passed away—what they call juvenile Huntington's. Aside from maintaining a healthy lifestyle—meaning staying away from alcohol and cigarettes—there aren't many specific recommendations out there. They use Haldol to help with the tremors, but it definitely has a sedative effect.