Planning for HD chorea
can help you preserve
your independence
HIREN P.
Care partner to brother with HD
On the Board of Directors for the
Huntington’s Disease Society of
America - Los Angeles Chapter
“One of the biggest things to educate people about is being patient and understanding about what someone with HD is feeling.”
“Nilesh was officially diagnosed with HD in 2005. Our family first started noticing Nilesh’s uncontrolled movements in his shoulders. He also declined cognitively and had a hard time paying attention. We didn't know what it was. Over the next 6-7 months he was tested for everything, but not HD, as we did not have any knowledge of that being in our family. We didn't even know what HD was at the time. We were close as a family, but opening up about medical history or things like that wasn't something that we really did. After almost a year, the doctor finally decided to test him for HD. I remember that his chorea symptoms worsened over time—he’d be moving but just didn’t know it.
“Everything was new to us. From initial diagnosis to not being able to do small tasks. There were times where we were very frustrated.”
As his movements progressed, he started stumbling. He had to stop driving and then after that was when it really started going downhill. This was a real turning point for his progression. Everything was new to us and there were times where we were very frustrated. My parents still had to juggle their jobs with taking care of him and that was definitely hard for them. I would spend every weekend with him. We had a lot of support from friends and family; just having that support was huge for us, especially when trying to navigate all things HD.
One thing people unfamiliar with HD could better understand is that what you see on the outside is different to what people with HD are really feeling on the inside. You might see these uncontrollable movements or behavior changes but, in their mind, they don't see it. They can't control it. So, the HD community is a foundation where people can understand or relate to what you're going through.
I want to continue to raise awareness about HD and offer hope to others who may be facing similar experiences. And by sharing Nilesh’s story, I want to provide support and reassurance—especially to families who have no prior history of HD or who may be navigating this journey for the first time.”