Seth Rotberg, who holds a master’s in nonprofit management, is based in Chicago, Illinois, and tested positive for Huntington’s disease in 2011. He shares how he’s preparing for the potential loss of decision-making as his Huntington’s progresses.
Transcript
To prepare for the potential loss of decision-making capacity, I think it’s very difficult because it’s a big change that can impact many aspects of my life.
So, although I don’t need to necessarily worry about it now, I’m going to have to worry about it at some point in my life, because it’s going to impact my ability to do things such as work, drive, cook, or do other activities that really impact my quality of life. And I don’t think it’s going to be easy.
But I’m also someone who likes to prepare accordingly. I’m definitely someone who is a planner. And so, one of the big things I would say is I know I’m not alone in this.
I can always reach out to the HD community. I know I can reach out to patient advocacy organizations for additional support or answers to my questions.
I think the bigger challenge is that sometimes losing your ability to make these decisions can come out of nowhere, and it’s going to be difficult to process.
But ultimately, I need to try to be as ready as possible for when that time comes. And until then, I need to also enjoy living in the moment and enjoy what’s in my control in the very present.
