According to the Michael J. Fox foundation, RBD (REM Sleep Behavior Disorder) can be an early warning sign of PD. RBD may include things like violent body movement, nightmares / disturbing dreams, and/or not even reaching the deep sleep level.
I’m in my 25th year since being diagnosed at the age of 38. I honestly don’t know, or don’t remember, whether I had any sleep problems before the diagnosis, but I do know that probably 90% of the time I’m not even aware that anything happened.
My wife has gotten pretty good at identifying early signals of an upcoming event and she quiets me before I do whatever it was I was going to do.
I have dived off the bed several times, chasing (or trying to escape from) an enemy. I have screamed many, many times, often to the frightening of any visitors in the house. I’ve gotten bruised and/or sliced up when diving onto nearby furniture.
I knocked down my floor-to-ceiling lamp one night when it must have occurred to me that it would make a perfect spear to throw across the room. My spouse wasn’t too pleased with that.
She also says I pummel her at times, something that makes neither of us proud.
Finally (this is the last bad story for now), about a year ago I had a week of hallucinations (in January of 2023). It’s apparently the case that the longer you have PD, the more critical it is that your body gets exactly the amount it needs.
I’ve been wearing a dopamine (well, carbodopa / levodopa) pump for about four years as part of a clinical trial for ABBVie-951. (that’s going very well and you can read about it in this blog journal). The pump has three flow settings for me; a flow rate of 0.53, a rate of 0.49, and a rate of 0.47. (sorry, I’m drawing a blank on the units …. it’s a measure of milliliters per some period of time). For the past four years, I’ve spent daytime at 0.53 and then cut down to 0.47 at night, since I won’t need quite as much dopamine at night when I’m inactive. My neuro suggested I try a slightly higher flow setting at night just to see if it helps with RBD (the hypothesis being that maybe I wasn’t getting enough dopamine at night). I bumped it up to 0.53 at night and that turned out to be too much. It was an awful week that ended up in one big hallucination.
I’ll write more about the hallucinations in a separate post. I’m hesitant to let my brain go back there to dwell on it. It was scary stuff. It still shocks me to think that something so bizarre, something that goes against totally what I think is true and real, can be thought of as logical and “well that’s just the way it is.”
Anyway, four years ago I spent a full week at a research lab in Raleigh where they determined the exact amount of dopamine my body needs (or could process). That number was 0.53. And today, that’s the number that still works for me. I don’t know if that means the number has stabilized or if it’s always been 0.53. I don’t know. But I”m happy I haven’t had to increase it yet. My understanding is that more carbo/levodopa (which converts to dopamine) can cause more dyskinesia (jerkiness, twitching, unusual body movements) and, apparently, possibly, things like hallucinations.
I was going to add something else … oh yes, sleep studies.
I’ve been two sleep studies in the past four years. In both studies, I was told that I got between one and one-and-one-half hours of actual sleep during the night and there was almost no deep sleep. Maybe that’s why I feel so tired so often. 🙂
Cheers, y’all