Ugh. I have RBD and am absolutely terrified of potentially developing Parkinson's. I've seen first-hand the ravages of that awful disease because two close family members (neither of them blood-relatives) have had it.

I was finally diagnosed with RBD in 2022 at Mayo, after about 5 years of increasingly dramatic (and increasingly frequent) episodes of punching, kicking, and shouting in my sleep. I always woke up immediately after lashing out or shouting, and always vividly remembered the dream. It was always some version of me being chased or attacked, either by people or animals (or insects).

Then, it escalated to me jumping completely out of bed one night. I passed it off as an odd, isolated incident... but when it happened a second time a couple years later, I knew something was wrong, and told my doctor about it. She sent me to Mayo Sleep Medicine.

I did a sleep study, but I slept so little and so poorly (not uncommon in sleep studies) that I didn't show any RBD symptoms.

My diagnosis was based on the obvious evidence and symptoms--confirmed by my sleeping partner. They can diagnose RBD based only on those factors, though confirmation with a sleep study is preferable.

I told my sleep doctor all that I had read about the correlation between RBD and Parkinson's, and she agreed that sending me to Neurology would be prudent.

The neurologist put me through a battery of tests, but did not find any evidence of PD, but wants to continue to see and test me yearly.

Ever since getting the RBD diagnosis I've been worried, every day, about developing Parkinson's. It's such a horrible disease. I hyper-focus and over analyze every little tremor or moment of clumsiness or forgetfulness that I have. I even stare at myself in the mirror looking for signs of "facial masking" and whatnot.

Sometimes I wish I didn't know. I know it's good to be proactive, but this has shown me that knowing I have a very high likelihood of developing a disease I was already terrified of... well... I realize it sometimes might be better just not knowing certain things.