So... I am over 3.5 years past my diagnosis with REM Sleep Behavior Disorder (RBD). Statistically, at 5 years post RBD diagnosis I think there is a 50% rate of PD, LBD, or MSA. I think at 10 years that goes up to 85%.
So I am at 3.5 years and am doing great (please don't jinx myself). I probably had a 66% chance of still being well at this point, so this is no great accomplishment. I do know a person who developed RBD at the same time as me, and they just got checked into memory care assisted living, but still, the odds are still with me.
The thing is... I'm not just not worse. I am better. My RBD is rare and mild now (please don't jinx myself). I used to throw pillows and fall out of bed. I think about every 10 days to 2 weeks I might say something in my sleep. Maybe yell. rarely do a kick.
But I had other symptoms 3.5 years ago too. I had crusty Seborrheic dermatitis on my face and head. That has been gone for over a year. I used to get lightheaded and have to hold onto things frequently when I stood. Now I just jump up (I was really thin, so that may be what it was). My sore left shoulder that was always sore is just a little sore some of the time. My neck that was always moderately painfully sore is just sometimes moderately sore and usually mildly sore an sometimes I don't notice it. I also seem to be getting smarter (I can spell!), but that may be due to stopping drinking when I got diagnosed with RBD.
The point is, and I hesitate to say this, but I might be doing something right. We won't know if I am doing things right for another 10 years (or sooner if things go south). So I am going to go ahead and make a better effort to document what I am doing and if anybody is stupid enough to take health advice from a high school graduate, well, I will make that most likely bad advice available.
This information might be most useful (or not useful) to people with RBD who have been exposed to EBV and have Hashimoto's. That is the subset I live in.
So I already have my blog, rbd-pd-protocols.blogspot.com/, but it is not organized. I was to corral this information into a structured document.
Sooooooooooooooooooooooo: Chapter 1 - What We Are Attempting to Accomplish
Spitballing from memory:
1: Lower inflammation.
2: Increase brain plasticity.
3: Suppress viral loads, especially EBV.
4: Chelate Iron (from the brain?)
5: Eradicate Desulfovibrio.
6: Eradicate helicobacter pylori.
7: Boost NRF2 (is that a goal or a means to a goal?)
8: Normalize the microbiome.
9: Boost SCFA production.
10: Improve/repair/assist? mitochondrial function.
11: Boost NAD production (is that a goal or a means to a goal?)
12: Resolve intestinal permeability issues.
I am missing some things, but it is time to go work on my house. I will be back at this tomorrow.
My high school educated brain thinks I have to do all of these things (and more?) all at once , for a very long time, to have a small chance of success. The odds are that I am wrong.
Suggestions welcome.