I've been living with it for four years now. It's in the cerebellum, near the brainstem. My decline is very gradual but noticeable over time. Today I'm in a bad way after going on a small hike. I haven't been sleeping much either but I thought the hike would be good for me. I'm here shaking all over, emotional and feeling on edge.
But what's killing me the most is that I'm noticing that I'm not myself in recent months. Easily confused, forgetful, weak and tired. I could stand up in the middle of a conversation and start talking about something completely different. Ask people to repeat themselves over and over as I can't quite grasp what they are saying. This slow decline is definitely going to be tough. Sorry for rambling, I think I'm feeling a deep loneliness from it.
Love to all of you