Summary of my idea of an ideal morning PD routine:
16 oz coffee
Nicotine gum
exercise: basketball in garage with music, weight lifting
food: blueberries, broccoli, 1/2 to 1 beer, sardines in olive oil
nutrients: green tea extract, black tea extract, zinc, vitamins: B-complex, A, C, D, fish oil
black tea drink to swallow pills (not fun...hopefully nausea does not occur...keep ginger gum on hand)
pyruvate rest of day to reduce hunger
Niacin if the buzzing in my head is still present
Nicotine gum significantly worsens my balance, as it is known to do, but I believe it's a good thing. Nicotine increases dopamine, but not in the PD part of the brain, the SN, and that's also a good thing. I do not really want more dopamine in the SN to improve my symptoms because I want to train the remaining neurons to do their job (exercise) in the hopes of reducing the progression. Exercise and diet can worsen the generalized tremors if not the twitching tremors, but it's possibly a good thing because it shows a reduction in dopamine which may be a way of exercising the SN neurons. So starting the day without breakfast, some nicotine gum, and then exercising, followed by blueberries, broccoli, 1/2 beer, and a can of sardines is my plan. Food after exercise produces the most muscle mass, which is the same as saying reducing fat if calories the rest of the day are restricted. The sardines have fish oil and can be packed in olive oil (omega 3s). The purines and alcohol from beer, lactic acid from exercise, and purines from sardines all increase uric acid which may cause gout but is strongly associated with lower incidence of PD, presumably because it reduces iron. To clarify, I want to take nicotine gum before exercise under the possibility that it is the impaired balance (not just its iron chelation) from nicotine that might cause smokers to build a better SN which might be the reason they normally do not get PD. All these effects are strongest in men, some of them not seen in women. Green tea extract, grape seed extract, and zinc need to be taken with this food since they each easily cause severe nausea, especially at the 2 or 3 pill levels I take of the extracts (but not zinc). Black tea extract does not cause the nausea. I take coffee before exercise (3 tablespoons in 16 oz) and black tea (2 bags Earl Grey in 16 oz) after exercise with the meal.
I wonder if the reason sleep is a problem is because the brain is suffering from lack of oxygen during the night and symptoms force us to wake up. All symptoms seem worse when waking up, but hyperventilating seems to help a little, not to mention water (or rather, the coffee).
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I wonder if the lack of the dopamine feedback mechanism that makes us slower to respond to people and unable to feel thirst is also slowing down our breathing rate. Most of the time my brain simply feels like it's not getting enough oxygen.
I ran a lot for a few years (pre-PD), and one of the keys to running is improving your VO2...for amateurs like me, a start was to consciously think about breathing as I ran, until it became more natural.
Years later, with PD, I try to run once a week. I'm slow, but I don't blame my VO2.
But maybe there is a correlation. Exercise is good for PD, that is commonly agreed. But is higher intensity exercise better? Should we build our VO2 levels and also bring more O2 to the brain?
If the lack of dopamine causes a depressed breathing response to the build up of CO2, then improving VO2 may not have any benefit. I mean the lack of dopamine "depresses" a variety of internal feedback mechanisms. Examples: thirst, muscle position, and lack of affect. If you have the ability to consume and utilize a lot of water, it still doesn't cause you go and get the water. Same thing with VO2: having that improved ability will not convince your brain to tell your diaphragm to get moving as the CO2 builds up in the lungs and blood. But if you have improved VO2, there are a lot of other things that are also improved that may help. Now that I think about it: 10 years ago I went to machu pichu and the lack of oxygen seemed to be affecting me 3 times more than anyone else even as my aerobic ability and thinness were better than average (38 yrs old at the time). But it does make me wonder if a supplemental oxygen mask at night would improve sleep in a PD patient.
HBOT was used in 65 PD patients, 55 receiving benefit.
HBOT: hyperbaric oxygen treatments. You get into a pressurized vessel with high oxygen. It pushes oxygen into cells in order for them to repair themselves. VO2: the body's maximum ability to absorb oxygen.
To answer to all 3 questions, it represents a goal each day rather than my actual. I get about half done, and don't drink that much beer or eat that much sardines. I notice benefits from broccoli and blueberries in terms of mood and clearer thinking. Those benefits are less noticeable if I do them everyday. Same thing with exercise: if I lay off a week, then the next exercise session greatly improves mood and energy. But of course these are not reasons to not do them everyday. Nicotine gum gives clearer thinking and more energy for an hour or two, but generally it does not improve mood because of decrease in balance and nausea due to not being addicted to it. But as I explained I believe this is good for the condition long term. I kind comfortable do only one 4 mg piece a morning which is supposed to be 2 or 3 cigarettes. So far 2 whole pieces gives more energy but makes me feel a little yucky and it might harm sleep. However, with only 1 piece, I might be getting the protection seen in people who smoke a pack a day due to the strong challenge it presents to my balance, and combining it with basketball, which uses eyes, hands, and feet all in coordination, requiring a lot of activity (exercise) in the SN part of the brain.
The biggest problem with what I've listed are the pills, particularly green tea extract, grape seed extract, zinc, B-complex, and fish oil causing nausea. Vitamins A and D are small and no problem at all, black tea has no nausea problem.
I've been trying to do most of this about 6 months. My thumb tremor has not been reduced by anything except rasagiline. My thumb tremor is worse than it was 2 months ago. With melatonin, exercise, and water, I've learned how to get 7 hours sleep instead of 5 or 6, which improves my days. I have not been diagnosed by a doctor. My suspicions became strong about 1 year ago after trying to find out why my balance and anxiety seemed worse. Thumb tremor showed up about 2 months ago. My personality fits what was described here recently very closely. I meet nearly all the criteria for risk factors: male, milk drinker, non-coffee or tea drinker in past, non-smoker, pesticide exposure as a child, very bad mercury exposure as a child, college-educated intellectual indoor programmer, personality profile, and history of no exercise and low vitamin D.
Nothing can reverse symptoms except a serious iron chelator (2 studies) and rasagiline (3 studies) and maybe intense exercise. My idealized routine is based on my pubmed research of risk factors, which can at best only stop progression.
Right handed people are more likely to get first tremors in left side, indicating a "use it or lose it" effect, which supports the idea that simply flooding the body with L-Dopa can make the underlying condition get worse even as the L-DOPA hides the worsening. It also supports my idea that a competitive full-body sport like basketball might be ideal, making existing neurons stronger if not generating new neurons. I know they say you can't make new neurons, but all the time they are discovering new ways in which neurons can regenerate and improve their function.
I'm right handed with tremors on the right side...but I do agree with "use it or lose it". Pre-diagnosis, for years I've had various periods of soreness/fatigue in my right arm, and neglected upper body exercise. I've been working hard over the last 7 months, and I am making progress with muscle development, reduced rigidity and improved range of motion, but tremor lingers.
Side note...I've been a regular coffee drinker and have moderately elevated uric acid...low on a lot of risk factors. Based on my history of symptoms pre-diagnosis (and maybe factors like these), my MDS expects slow progression.
I'm curious about your experience with rasagline...it sounds like you have tried it, but don't take it regularly? But it did help with your tremor?
I started rasagiline about 10 days ago and suspected an improvement the first day, and became more sure each day that followed for 5 days. Tremor in left thumb has been reduced. Besides periods of lip and teeth chatter when I'm stressed, the thumb tremor is my only "classic-PD" tremor, extremely constant for past 2 months. Based on balance the last 5 years getting slightly worse and unusual anxiety a year ago (most common in early onset), I started suspecting PD. I've been waiting on the thumb tremor for a year and knew it would start in left side because I could force it under very certain conditions last year. 5 years ago I started researching balance after a slight deterioration in normally excellent balance and PD always showed up on the list, but I could not see any other evidence for it until last year's anxiety and then I looked into PD more and became pretty sure.
They say well water is correlated with it, but that usually coincides with farm (pesticide) work.
Coffee is only about 30% less likely unless you have over 10 cups a day then it is 75% less likely. This is a bigger difference than it sounds: 30% less likely is another way of saying 33% more likely to get PD if you do not drink coffee and 75% less likely to get PD is same as saying 300% more likely to get PD if you do not drink over 10 cups (8 oz cups). This dose-response also exists for exercise and nicotine, I believe 3 packs of cigarettes a day to get the 75% reduction. I suspect the max exercise reduction is at 2 hours a day.
I can't remember the pesticide name, but one of them is 10x times more likely to result in PD. So if you're a farmer exposed to pesticides you need to smoke 3 packs of cigarettes and drink 10 cups of coffee each day. With added benefit of the outdoor exercise, you'll supposedly end up with less risk. But of course this isn't counting increased cancer risk.
If your exercise in the past was nearly good, then it's the things you have not done that should provide more protection like 3 green tea extract and black tea extract pills a day. Heavy green tea pills seems to increase my lip tremors and loss of sleep, so I've started decaffeinated types but nausea's still a problem if not taken with substantial food.
In the big picture...so many things to consider, and so little conclusive info.
Post-diagnosis, I've improved my diet, nutrition, and exercise...and my overall health has improved considerably. My list of supplements is pretty close to the one here: reverseyoungparkinsons.com/...
After waiting 6 months to get an appointment with an Motion Disorder Specialist last year...the only concrete result of that appointment was that she prescribed trihexyphenidyl (artane). The reasoning was that it would compliment my exercise priorities and nutritional focus by helping reduce tremor and rigidity. She said it was an old drug, with a long safety record, and could provide some relief until I needed the main PD drugs.
It helped a little bit, but I began becoming more suspicious of it...blurry vision issues...and a friend pointing out something about my one of my eyes that concerned me. I started working myself off the drug by gradually reducing dosage, until I could stop, which did help with eye/vision issues. (These are well known common side effects, which I was warned about...so not totally unexpected.)
While doing some research so that I could go over this with the MDS, I find that in the last few months there have been numerous articles warning about anticholinergic use (even common stuff like Benadryl) increasing the chance of future dementia. Scary stuff...and hardly worth the risk for questionable benefit.
At 1500 mg each of green tea extract, grape seed extract, and black tea extract, my list is a subset of that protocol, but harder to do due to nausea. I have the rest of that list in stock, but do not take them very often. I need to research them more before I become convinced. They do not have magnesium, carnitine, zinc, copper, selenium as methylselenocysteine, CDP Choline, vitamin E, berberine, fish oil, Macuna, or Boca. They can't all be done. I need to research them all.
But that is a really good web site because they found a paper that says curcumin crosses the BBB and a paper that speaks really well of combining ALA and ALC, which I am more sure cross the BBB, but I had not gotten to researching them. One great thing about those two is that they do not cause nausea.
It's a subset of my list as well. But originally some of those items were not on my list and I have learned from it.
Jon, the guy who put that website together, has done a great job of collecting references and putting it together.
For other supplements that I also take...I'm not sure how much they relate to PD:
Magnesium has done wonders for leg pain that I was suffering, which probably has nothing to do with PD. The difference convinced me I had to be magnesium deficient, because it was so significant.
Fish Oil - Not sure it has any PD effect, but good for overall health.
Vitamin E - Take a good blend of different types of E with Vitamin C (I get C from food, not pill)
More Vitamin-B Complex - I take AM and PM, plus extra B-12 midday.
Vitamin D3
Other antioxidants - Astaxanthin, lots of natural stuff in diet.
Because of my experience with Magnesium, I also take the unproven Magtein which supposedly takes Mg across the BBB. (I've dropped Magtein a few times, but after a few days I feel achy and worn down, so I think it is doing something, and I add it back.)
I'm a work in progress...8 months post diagnosis, and focused on getting my overall health back, and exercising to address strength, balance and range of motion issues. I've dropped well over 40 pounds...gone from XXL to L...and working to improve lean muscle mass. Major health improvements, but a lingering tremor.
That ursocholanic acid looks really good. I wonder if there are similar things out there. Or rather, I wonder how I will not miss such things in the future.
Phytates are very good at blocking iron absorption, no gout threat! Can take IP6 (phytic acid) to bind iron quite effectively. Calcium binds iron also. How are your Omega 6 levels? Should be low relative to Omega 3's. Arachnidonic acid levels are best fairly low (searches on Medscape, and Medline).
One Dr Wilson posits a manganese toxicity theory from leaded gasoline and welding as a cause of PD. He proposes the idea that 100mg inositol, 100 mg choline, 100 mg methionine and 100 mg niacinamide will help to remove the Mn from the brain. Says they are all methyl donors.
Somewhere in these posts I came across mention of PQQ, a special form of CoQ10. Reading the article I came across Dj-1, a gene which when mutated or oxidized is implicated in familial (inherited) and suspected in non-familial PD. This gene acts on a transcription gene named NrF2 ( positively affected by coffee) which stands at the top of a cascade that turns on many metabolic antioxidant pathways. The Dj-1 gene handles oxidants produced when dopamine is produced. It prevents cell death from decreasing levels of Glutathione, a major bodily antioxidant that helps remove hydrogen peroxidase and other oxidants. NAC (N-acetyl cysteine prevents oxidative damage to the Dj-1 gene. Alpha lipoic acid increases levels of Glutathione. I'd take both by pill if I had PD. I am researching for others with PD.
Ama_10, IP6 is in my stock of pills, but I do not hardly take it because I can't confirm it crosses the blood-brain-barrier. The iron chelator has to cross the blood-brain-barrier in order to be effective.
I tried macuna pruriens at a level of 10 pills at a time (which is like two 250 mg doses of L-Dopa) and could not see a reduction in thumb tremor or anything else. Maybe it has something else in it that helps that is not supposed to act immediately. The first time I ate a big cup of fava aka broad beans (which is like macuna), I seemed to have improvement for a couple of hours. Subsequent tests could not confirm it, but I used dried beans which need a lot of heat to cook and end up dark brown. Fresh should be a lot better and can still be bright green when consumed, but it is very hard and expensive to get fresh broad beans. 1 cup is equal to 1 dose of L-Dopa.
Someone posted here that he needed 12.5 mg carbidopa in combination with macuna in order to see it work.
Rasagiline has been the only thing to reduce thumb tremor (only pharmaceutical I've tried).
I also can't confirm PQQ crosses the BBB, and too much of the research and internet talk is from the manufacturer pushing it really heavy. Animal research for PD is useless unless the compound in question has not been shown to cross the BBB or has not been demonstrated to work in epidemiological studies.
Really excited that a man in India with PD for twelve years, two years bedbound is now able to walk and apparently function normally. I'd send you the newspaper article in the Indian Newspaper but I don't know how to convert a Facebook page to e-mail format. He contacted a Neurologist there and got two treatments of autologous (self) stem cells. Sorry, only doctor I know about using autologous stem cells is a former Osteopathic surgeon who uses them to rebuild joint tissues at jointrehab.com. I don't know the procedure for delivery of stem cells for PD but that is an effective way to go to replace damaged neural cells.
I posted the page on Facebook for Betsey Melendez but plan to put it on my own site since I am the only Alice Alspektor in existence so should be easy to locate.
First, N-acetyl cysteine works like PQQ and I think crosses the BBB.
TMG or eating lots of beets provides methyl groups which are also helpful. TMG (tri-methyl glycine is converted to SAM-E in the body)
The facebook site says, timesof india.indiatimes.com. Still trying to get it sent to my Facebook page but share button on Betsy Melendez' page wouldn't do it.
Someone posted a link about the India man here recently. I did not research it a lot, so I have not been able to confirm NAC or PQQ as absolutely helping in PD. For now I have not perfected my implementation of things that are nearly absolutely known to help (heavy exercise, 3 packs of cigarettes per day, 10 cups of coffee per day, black tea extract, grape seed extract, magnesium, vitamins A, B, C, D, fish oil) that I can't add new things.
You might see if green coffee bean extract is more potent than drinking so many cups of coffee. Coffee activates a transcription gene, Nrf2, also activated by the Dj-1 gene which helps protect from oxidative damage generated when the body produces dopamine.Reactions in the body have yin and yang effects.
A search on Nrf2 turns up a lot of stuff that looks important to PD. For example, two chinese herbs that increase it, but I then have to find out of it crosses the BBB. Coffee extracts were actually tested in humans and the one you mention seems to be the only one of 4 similar options that did not increase BDNF.
The best was "whole coffee fruit concentrate powder". I've tasted coffee beans off the tree and they are awesome with strong red color and very sweet exterior, which is thrown away from the seed that is a green coffee bean. Chocolate also has and intense purple antioxidant exterior that oxidizes rapidly when exposed to air and taste awesomely sweet and good, a lot better than the "chocolate" core.
I'm experimenting with green tea as tea instead of green tea extract to see if it can reduce the "buzzing" in my head that seems related to inability to concentrate.
There is a product called, OmegaKrill 5X. Its promotor, an oncologist claims that most available fish oil is in the form of ethyl esters and is very poorly absorbed. This product is obtained by CO2 extraction and stabilized with astaxanthin and is colloidial and micronized for easy no-burb or other stomach upset. Tried to copy the e-mail page address but didn't work like a link. Noticed that hovering over leave page button more than halved the price down to $24.50/bottle with a reorder at that price the next month. Interesting article but might not be able to send it to you. Might try to copy and post it ( the article, not the buy now page). Would that break any site rules here?
Krill oil, like PQQ, coffee bean extracts, curcumin formulations, resveratrol formulations, and several others, have had the research "pushed" for profit reasons by the manufacturers who are making the special formulations. Like pharmaceuticals, they first file a patent, then push the research, trying as best they can to hide the financial interests behind the "research" (marketing). The pharmaceutical industry is more sophisticated and sinister in how it does this because they have to be: the regulations are more stringent. Most people like my sister simply hear about something, maybe posted on facebook (they target social media above all other methods) then go to the website and anything called "research" on the manufacturer's website they believe is real research when it's not even published in a journal. My second coffee link below (which appears to be a broken link) was a self-published paper via creative commons made to look like it appeared in a journal.
Krill Oil may not be as good as plain old fish oil, and one recent paper diluted the fish oil with corn oil for "comparison" reasons:
It's really annoying that in their papers they state "the authors declare no conflict of interests" and yet they are all listed on the manufacturers' website as employees.
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