First off, for those who don't know me, I have NOT been diagnosed with PD. I was diagnosed with REM Sleep Behavior Disorder back in April 21, which the experts say will lead to PD or something worse. When I was diagnosed I did have some other odd symptoms. Mild balance issues, Seborrheic dermatitis on my face, left shoulder so sore I had to use a mouse right handed, tension in my neck, random involuntary muscle movements, and a sore left leg. I joined this group very soon after being diagnosed and have been working on stopping my progression since then. This page shows what I am doing currently: https://rbd-pd-protocols.blogspot.com/p/my-stack.html
Okay, 2.5 years in and I am doing pretty well. No more balance issues, no more Seborrheic dermatitis, my left shoulder and leg are much better. I am back to being left handed. The random jerks are diminished greatly. My neck is still tense, but better than it was. It used to feel hard to hold up my big head.
My REM Sleep Behavior Disorder was also much improved. I went from originally having 2 or 3 fairly extreme episodes a week, falling out of bed, hitting walls, throwing pillows, to gradually getting down to about 1 mild episode every 10 days to 2 weeks. I have not hit a wall or thrown anything or fallen out of bed for over a year.
A big part of my success, I think, was going gluten free and lectin free (as much as you can go lectin free). Dr. Paul Mason - 'How lectins impact your health - from obesity to autoimmune disease' https://www.youtube.com/watch?v=mjQZCCiV6iA
Bolt's Failed Pickle Experiment: So you know how when things are going well, you think that you can take a chance and things might continue to go well? My diet is pretty restricted, cutting out gluten and lectins, and I saw something about fermenting destroying lectins and how fermented pickles are a GREAT source of probiotics. So I thought... if I could find fermented pickles, even though cucumbers are nightshade vegetables and chock full of lectins, I should be okay.
Before adding fermented pickles to my diet I did a lot of research. I posted about it here: Some people think Lectins might cause PD, some people think Gundry is a Quack. This great article has plenty of evidence for both sides https://healthunlocked.com/cure-parkinsons/posts/150178158/some-people-think-lectins-might-cause-pd-some-people-think-gundry-is-a-quack.-this-great-article-has-plenty-of-evidence-for-both-sides
So I went and bought a jar of Bubbies Fermented Pickles! From what I read you should have 2 pickles a day, so that is what I did! 2 pickles a day for about a week! I felt great, and my poop got better (per the Bristol chart).
The Experiment Failed. I have had 4 RBD episodes in the last 8 nights. 2 of the episodes were not bad, but in one I was trying to kick a gun out of somebodies hand in a car. And last night's was the worst. I was driving along a highway and saw a man on a motorcycle had stopped on the side of the road and kicked a falcon so I tried to honk my horn. I kept pushing the horn with my thumb but it did not make any sound and then my wife woke me up. I was pressing my cat (normally, for safety, he does not sleep with us). Thank God the cat is fine.
So... I seem to be back to square one on the RBD. I guess I flooded my body with lectins for a week. Or maybe this was caused by the clocks changing, which coincided, but I think it was the pickles. I read all I could to figure out if the pickles would be okay. There is not as much info out there on lectins are you might think. Some articles said fermentation destroys all the lectins, some say it reduces the lectins, Gundry said fermented pickles were better than regular pickles.
I am just sharing this because, being early days, I feel like a canary in a coalmine. Maybe somebody will find this info useful. I am back on my pre-pickle protocols. Hopefully my sleep will be back to "not too bad" soon.
