I Have Been Tempted to Write About How Great My Protocols Are For Awhile :(

[Bolt_Upright]

Those that know me know that I have not been diagnosed with PD. I was diagnosed with REM Sleep Behavior Disorder 3 years ago and at that time I had some PD symptoms also, though not enough to be diagnosed.

Over the last 3 years I have worked out what my high school educated brain thinks are good protocols and I am much better than I was 3 years ago.

Almost every day I have wrestled with the question of whether today was the day to share my insights and protocols. Even though things have been going great for me, I have been afraid that as soon as I give others advice the tide will turn for me and I will find I was deluding myself and derailing others.

Oddly, now seems like the right time to share, as last night I had a long violent dream that woke my wife up as I was trying to get this overweight pale dark haired man away from me in a small doorway. I was calling him a rat, but he was not a rat, I just called him that.

I feel better sharing coming off of a failure than coming off of sustained success. I don't want people to believe in me. Please do your own research but maybe take a look at what I am doing: rbd-pd-protocols.blogspot.c...

So why did I have an RBD relapse last night?

Possibilities:

1: None of my protocols make any difference. This seems unlikely as I am better than I was 3 years ago.

2: In the last week I felt so good I was skipping my morning 50 minutes of 40 HZ isochronic tones. Maybe these tones are important? I have not missed listening to them before bed.

3: For about 8 weeks, stopping about 10 days ago, I was having pressure cooked black beans with a little potato almost every day. Pressure cooking significantly reduces lectins, but I don't think it totally eliminates lectins. Maybe, like a person with a peanut allergy, no amount of lectins is a safe amount of lectins for me?

4: Or maybe the pressure cooked black beans and potatoes were helping, and my body misses them since I stopped about 10 days ago? Maybe, but I think all of my improvements started well before I started making those pressure cooked beans and potatoes.

5: Maybe the dream was triggered because I accidentally listened to some of protest singer David Rovics very dark music right before bed. It did occur to me at the time that this was some dark music.

6: Maybe I slipped because I have not had eggs in about 10 days? They were a staple.

7: Maybe I slipped because I did not have my insanely large serving of Breyers Neapolitan ice cream made with real sugar? (I remedied that today!)

8: Maybe I am just like a damaged old computer now. I am going to glitch sometimes, but that does not mean I am deteriorating.

Evidence I been deluding myself that things are better than they are:

1: I have still been averaging 2 or 3 very mild RBD episodes a month over the last 6 month (but none in January).

2: And a few more serious RBD episodes:

A: Dec 23rd Kicked the wall.

B: Apr 10th Got attacked by a dog and had to kick it.

C: Mar 3rd Dangerous stray dog was in the garage and came towards me as I went down the outside stairs to investigate.

D: Mar 5th Somebody was stealing my computer equipment outside in some strange situation.

E: Mar 16th Some monster type was trying to force himself in at my previous house and I yelled at him to stop.

F: Mar 29th I was about to parachute off of a huge balcony without a railing and as I got close to the edge I slipped and fell on my backside with my feet hanging off the edge so I leaned back and put my hand off the edge of the futon and woke up. I did not fall or anything.

G: Apr 11th I had a dream where I kicked something out of somebody’s hand, but I am not sure if I woke up and I did not make contact with anything. I probably moved but I am not sure.

H: Apr 23rd: I was playing football and the opposing runner fumbled so I stretched out and used my hand to stop the ball from going out of bounds. I lightly touched the wall in stopping the ball.

3: I had no noteworthy RBD episodes since Apr 23rd until last night. That is about 7 weeks of smooth sailing.

4: Today when I held a heavy fork loosely in my left hand the fork trembled.

5: I used to have left side back, shoulder, and upper left arm pain that improved to just upper left arm pain, but now the shoulder is a little more sore again and I can feel some slight weirdness in the left side of my back.

Evidence I have NOT been deluding myself that things are better than they are:

1: I have not fallen out of bed or thrown anything in my sleep for over 2 years. This improvement may just be due to my retiring and reducing stress.

2: A lot of my PD like symptoms have been gone for a long, long time:

A: Orthostatic Hypotension is gone.

B: Dizziness is gone.

C: Seborrheic dermatitis is gone. So is my dandruff.

D: I am nimble on my feet.

E: I am very active politically and my brain seems sharper than ever.

F: My involuntary movements, twitches and jerks and such, are almost non-existent now.

G: My urinary urgency is much much better. Sometimes I have to pee but am busy and can wait over an hour.

3: I do projects every day. Sometimes I just get up and go do something just to be doing something. This has never been my personality.

My Plan:

1: Lay off the pressure cooked beans and potatoes!

2: Listen to more 40 HZ isochronic tones.

3: As QAnon would say: Trust the Plan.

[artinson]

Thanks for sharing. I hope that your success continues.

[SAGoodman]

Just like me with PD Bolt, some days are better than others. Recently my parents got to see me on an off day and were quite shocked at what it looked like. I only have that happen two to three times a month, so don't get discouraged, as you have the data and your protocols to give you guidance, I just wish I kept better records! 😁

[LindaP50]

Successes sound great! Congrats.

[gomelgo]

You do keep meticulous records Dave. Good for you, and for us. Curious how digestion is with and without the beans and taters.

[Bolt_Upright in reply to gomelgo]

So... I think I have had IBS my whole adult life. Always bloated and always felt like I needed to spend an hour on a number two before going to do anything physical. That pretty much went away a few years ago when I cut out gluten.

People, cover your ears: So with the beans, and even since the beans, I noticed I fart sometimes. Farting is something I almost never did, and had almost never done for over 20 years. So now it happens once and a while. Should not be a surprise with the beans, but I take it as a good thing. Something is probably off with our digestive tracks, and at least this change indicates change, which may be a good thing.

[Gallowglass]

💕🙏🏼 I admire your work!

[reedboat2]

Keep up the good work, Bolt

[MBAnderson]

Clearly, you have not only succeeded in slowing down the worsening of RBD, but have to a substantial degree reversed it. You have delayed, or perhaps even denied - at least so far, the onset of PD. "I am much better than I was 3 years ago." Not too many can say that.

[Bolt_Upright in reply to MBAnderson]

Thanks Marc! Without you and this group I'm sure I would not be able to say that I have improved. The group has taught me so much and your Zoom calls provided a much needed moral support. Thank you and you all.

[Bolt_Upright]

One other change I have made in the last 2.5 months is I started using Tabasco Sauce in my pressure cooked beans and potatoes and also in my beef, onion and mushroom meals. Red peppers have lectins, but Dr Gundry said the fermentation used in making Tabasco Sauce destroyed the lectins. That is the same thing I read about the lectin in fermented pickles and I had the worst stretch of RBD I had had in 2 years after eating those pickles. 5 episodes in 11 days.

So... No More Tabasco Sauce for me!

[LAJ12345 in reply to Bolt_Upright]

May not have been the lectins though! Was there msg in it?

[Bolt_Upright in reply to LAJ12345]

Removing lectins is a cornerstone of my protocol. I'm not changing horses

But no, no MSG in anything I cook. Thanks.

[gomelgo]

wait you never farted for 20 years!?! Never? I can't imagine that this is normal.

[Bolt_Upright in reply to gomelgo]

Men don't fart, we poof.

[Parkie1 in reply to Bolt_Upright]

And what do ladies do then?

[Rufous2]

Bolt, I'd like to join those congratulating you on your diminishing RBD episodes and wish you continued success in staving off PD. I know you didn't ask for advice, but since I'm old and opinionated and have a spouse who has had RBD for 20 years, I'll offer some anyway; add exercise to your protocol!

Forgive me, but I simply can't wrap my head around the idea that someone who's so intelligent and stays on top of all the research, wouldn't try the one thing that has actually been proven to make a difference in this awful disease. If you were incapacitated, or suffered from profound apathy I'd understand, but you said you find yourself to be quite motivated these days. Quote; "Sometimes I just get up and go do something just to be doing something. This has never been my personality."

I apologize if I'm being pushy. But I wouldn't feel right if I didn't speak up, and urge you to take advantage of your improved health and new found volition to start exercising while you still can. I know in my heart you would not regret it.

[Bolt_Upright in reply to Rufous2]

That's very nice of you. How is your spouse doing? Great I hope.

So this will sound very stupid. I do go out and work in the yard almost every day. It is not high intensity exercise, some tasks are harder than others. Not so much in the winter.

Okay, here is the stupid part: I am not trying to slow down progression. I am trying to stop and/or reverse progression. I understand HIT exercise can slow progression. That just does not interest me. I told you it would sound stupid.

[Rufous2 in reply to Bolt_Upright]

Well, to be honest, that argument doesn't make much sense to me for a number of reasons.

If you want to stop a speeding car you have to slow it down first. And if the brakes are faulty you'll need to find other ways to accomplish your goal...perhaps by driving up a hill, or into a field....or even better, into a field heading uphill. The point being, the cumulative effect of those things will get you stopped a lot faster than waiting for the car to run out of gas. Likewise, adding the effects of exercise to your already effective protocol might just get you down to zero RBD events.

Also, it stands to reason that if vigorous exercise can slow progression in early PD, it could very well have an even more profound effect in prodromal PD. But if you wait for double blind studies to prove this is so, you could very well miss out on an important window of opportunity that will never be open again. And what's the worst that could happen if you give it a try....you get fitter?

Stopping progression is a noble, but probably a not very realistic goal. And significantly slowing progression at "our age" might be almost as good, allowing the disease to be treated, much as diabetes is, without a big impact on quality of life. I know my spouse's sibling who has advanced Parkinson's, would gladly exchange their wheelchair for the cane they used 15 years ago.

OK, nuff said, I'll get off my soapbox now and leave you in peace. 😊

[Ghmac in reply to Bolt_Upright]

Wouldn't the beginning of reversing progression be slowing progression?

[Bolt_Upright in reply to Ghmac]

Slowing progression might be the beginning of stopping progression. It might not.

To rephrase a famous Clint Eastwood line: A man's got to embrace his limitations.

I can only do so much. An exercise program is a mighty big distraction from things I want to get done in life. Whatever the solution is, if it exists, lies outside of the box. That is where I am putting my efforts.

But most importantly, I can be a very stupid man. The stories I could tell you about my stupidities! They are epic.

[Ghmac in reply to Bolt_Upright]

We were all young once, maybe stupidity when young is a requirement to make us wise when older?

[Bolt_Upright in reply to Ghmac]

Oh no! My stupidity continues!

[Getz]

Mate, you have been one of the best PD advisers I have come across. I have followed most of your advice with the only exception: I also follow John Pepper's advice about walking 3x weekly for an hour. Chin up and stick with what is logical. While typing this I have 40hz going on my omnipemf.

[Bolt_Upright in reply to Getz]

Thanks! You know, I could probably work John Pepper's plan into my day. I might try that!

Which file are you using? Hopefully it is the 250 HZ pulsed at 40 HZ: Here is the file: 250hz pulsed at 40hz Isochronic.mp3 drive.google.com/file/d/14X...

I hope nobody is still using that actual file used in the MIT mouse studies. That audio was designed FOR MICE EARS

[Getz in reply to Bolt_Upright]

I couldn't put up with either the sound or the flashing lights so I simply use the omnipemf, which is like a hairband and provides Pulsed Electro Magnetic Frequency which you can set at many different frequencies including 40Hz

[PalmSprings]

Thanks Dave! I am doing many of the same things or a close version of parts of your list. I too believe I have had improvement in how I feel. I am going to add a few of things from your list to my regimen and see how I feel. By the way, I noticed your health has improved from when you joined the Zoom calls on Sunday. I see it most in your face. You lost the sunken cheeks and you have a much rosier complexion. What is it they say…. “A picture of health”. Cheers

[Bolt_Upright in reply to PalmSprings]

That's so nice! Thank you!

[goldengrove]

I love both your dedication to working on the problem for yourself and others, and your humility - a rare combination.