Questions, questions, quesstions

[Alock2020]

1)I was diagnosed 6 years ago, and have, I think, a good neurologist, although she does see 650 patients per year.

-Any opinions on whether that's too many patients for the neurologist to be effective?

2)I don't eat any of the verboten foods, except that I do have a bit of sweet tooth, and have managed to limit the satisfying of it to 1/2 of a Trader Joe's small dark chocolate bar, twice a day. I also add 1/2 tsp/day of Mannitol in to my oat meal and coffee. I've read hundreds of CureParkinson's articles and have noticed that many supplements are recommended. None of my neurologists, including the current one, are interested in researching supplements. They're skeptical of anything but the established drugs . The most open-minded of them will comment that at least taking a particular supplement isn't dangerous.

To those taking supplements, what are your top 5, in terms of your experience of their effectiveness?

3) I purchased a Coronet Infra-red Helmet a few months ago, and have been using it once a day, which takes 24 minutes. I realize that twice a day is considered better, but I don't have 48 minutes per day to spare. I can't tell whether it's helping or not- it's possible that I sleep better.

-Any opinions on this product?

4) For about 5 years, I've been trying to find the me optimal dosage of B1 per the Constantini Protocol. I've failed to find it so far, and I'm tempted to give it up as a waste of time and effort. Supposedly if the amount taken is too low, there's no effect, but if it's too high, one feels "jittery."

Since I often experience high levels of anxiety, I don't know how to distinguish between it and "jitteriness."

-Any tips re: following the Constantini Protocol?

5)a) What do you consider the best foods for neuro -protection?

b) For those who make smoothies, are they're any "magic formulas" (recipes for brain health)?

[park_bear]

A lot of questions I will tackle a few of them..

It is not how many patients your neurologist sees, it is whether she is effective for you. From what you have written it sounds like the answer is yes.

MDs are really only allowed to recommend things that have passed large expensive randomized controlled double-blind trials. These trials are mostly reserved for profit making drugs, although occasionally other modalities get tested. Supplements or food ingredients such as cinnamon and thiamine have not received this sort of testing, even though there is evidence in favor of their effectiveness and the risks are modest. So do not expect any MD to ever recommend any supplement for use in Parkinson's. If you encounter an exception that is golden.

Understandably it can be very difficult to distinguish between jitteriness and anxiety. My indication of too much thiamine was interference with sleep. Try that as an indication rather than the difficult to judge jitteriness.

Top supplements for me are thiamine and cinnamon.

[Zella23]

it’s certainly a minefield with supplements, diet and judging whether thing help. In the 9 years my husband has been dx he has tried many things to help. I think walking every day is definitely the best thing he does. If he doesn’t go out one day the next one is more of a challenge getting up to speed. The red light hat in the morning, daily he’s done this for many years. Fairly healthy eating now more of a Mediterranean diet. Still had wine and the occasional chocolate or desert.

Supplement wise, all vitamins including D and K. Liquid fish oils, cdp choline, NAC, lithium orotate, a few others I add occasionally. He also has a Cue1, makes broccoli seed tea as well. Used B1 for many years but didn’t find much difference. Has used Cinnamon in porridge for a few years.

Still on minimum meds as any more he gets dyskinesia which can be very unpleasant. Doing ok at the moment.