Seth Rottberg, 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 planning ahead and using tools like AI can help you stay in control and make your voice heard through every stage of Huntington’s.
Transcript
So I’ve always been someone who prepares for what’s ahead. I’m a planner, which means making sure my voice gets heard even when I start to develop symptoms one day. So I would always say share your challenges with HD, with your care partner.
You know, they can even help speak on your behalf at times. Perhaps if you’re someone who needs some additional time processing information due to some of the cognitive symptoms, you can write everything down or maybe use the power of AI to help communicate your needs.
I would also say it’s important to prepare for what’s ahead. So for me, you know, it’s putting together a living will or putting together legal documents that will share my preferences for medical care and who can make these decisions on my behalf if I’m unable to do so.
I want to maintain regular communication with my healthcare team and my loved ones. That way, you know, if I’m unable to advocate, at least my loved ones or healthcare team know what I’m looking for and they can kind of advocate for me when necessary.
