What is the connection between these?
 

Some findings I believe have to be connected somehow to PD, come on, Rick, Ron, RLS, I know you have to have an opinion about these!

1. mitochondria has three basic functions:

make ATP
clear toxins
give cell death signal*

2. in making ATP, free radicals are naturally produced. In healthy cells, they are naturally and quickly cleared away by antioxidants (so called beause they keep the free radicals from oxidizing whatever they attach to)...but in cells that lack enough antioxidants, they cannot be cleared away and stick around wreaking havoc, making the cell sicker and weaker and less able to make ATP which is why one may feel so fatigued.

3. weakened mitochondria can make only around 2-4 molecules of ATP: healthy ones can make 38. The more ATP you have, the more energy and endurance you have.

4. it may not be the intake of sugar so much, as it is the insulin levels that are required to respond to it. The brain makes its own insulin, that is how important it is. So when the body gets a rush of sugar, the cells go into overdrive. If this happens often enough, and it does, just try to find a processed food that does not have high fructose corn syrup in it!, the body builds up insulin resistance and the path to diabetes is established, both in body and brain. I have seen the connection between PD and diabetes, as well as Alz. Additionally, it is well documented that people with Alz. and very advanced PD actually crave high sugar foods and usually will eat little else, even people who never before dx had craved sugary foods. Something has messed up that insulin balance and the brain is the victim.

*the cell death signal consists of the mitochondria signalling the cell that it is time to die, at which point the cell opens up and allows a flood of calcium to enter the cell, and the cell then dies. This is why calcium channel blockers may seem to slow progression, because they are delaying cell death...but what I think is really happening is that they are forcing an unhealthy cell that would otherwise be purged to continue to function weakly and sickly, which may very well make adjoining cells worse off. I don't know that, just thinking that if the body's natural response to a sick cell is to "prune" it out, keeping that sick cell in the body is probably not a good thing.

What this means to me is that like Dr. Wahls, radically changing our diet may well affect progression or even better, very gradually reduce symptoms. As the cells begin to get what they really need, as she calls it, micronutrients, they begin to function better, clear away toxins and free radicals better and more completely, are able to gradually make more energy, etc.

questions
 

Lurking-

I was thinking of you last night and have a question of my own that I will ask first lest I forget it - What is the status of your flirtation with iodine? How did it turn out in the long term? It ties in with the rest of this BTW.

As to the mitochondria, let me come at it from where I am at present, if I may. As I have reported in the thread on creatine, carnitine, and mitochondria, I was enjoying great success with acetyl-L-carnitine. I swear that my symptoms were down 50%. Using less meds and getting better response too. Sleeping great. Working like a Trojanand enjoying it. Etc.

Unfortunately, a little over a week ago and almost overnight, that all fizzled. In fat, taking the carnitine seemed to make things worse. As I tried to make sense of things, a few "random" facts came up.

The pattern that I had experienced was like a good thing that reached a level where it went bad. That is a pattern that I link to endocrine response, rightly or not. You reach a threshold. If you draw back then things settle down. If you ignore your body then critical thresholds can shift and you face a new reality.Sometimes good but often not.

So, I quickly backed off and have been letting things simmer for a week now. I intend to dip a toe in later this week. Meanwhile, symptoms drift back toward where they were five or six weeks ago but a part of the improvement remains.

ALC has been well researched and given high marks for safety. It is popular and an awful lot is consumed by the athletic community. It does its thing by transporting fatty acid fuel into the cell and to the mitochondria where it swaps it for wastes and brings them back out.

The only negative that I found were a few very vague worries about possible poblems for people who have low thyroid (hypo-). While high thyroid (hyper-) gets the attention (Graves disease etc), hypo- is actually more common but often overlooked because it moves slow and symptoms are vague. In fact, it is very, very similar to PD.

One of the things that I wonder about is if PD could be a thyroid problem.

ALC comes from our diet. The best source is meat. Red, bloody, paleolithic meat. Skip the chicken and go straight for the antelope. Pass the mastodon, please. You get the picture.

We have talked several times about the fact that many of us do best when we start the day with animal protein. And we found that many of us have blood type "O" which supposedly indicates a need for meat.

Then there was a study that many will remember from about ten years ago where a doctor in South American cattle country reported good results with giving his patients niacin. The really interesting part was the fact that the patients at baseline were consuming huge amounts of beef every day. Was it a form of self-medication where they unconsiously knew that they felt better when they had a carnitine-laden meal?

Do we have an unusual need for bovine burgers? Another possible interpretation - that brontosaurus is loaded with those pesky, slippery "B" vitamins.

Nobody believed in scurvy as a "C" deficiency at first.

Any thoughts? -Rick

lots of q
 

Please excuse the following unorganized response, trying to cover lots of ground and it's late....

It seem so complex because there are so many variables....but I know that when we finally untangle things, we will discover that things are really beautifully simple. As you say, it's all a matter of balance.

So, first, as you asked, iodine. Of course I bought a huge container that will last me and my descendants into the next millenia...unfortunately, shortly after I began adding it to my water, I got hot flashes (never happened before), sudden sweats (never happened before), and some heart palpitations (again, never happened before), so I had to quit. We began using iodized sea salt instead, rather liberally I might add, so I feel our iodine intake is good. Incidentally, once I quit adding iodine to my water, the sweats, flashes, and palpitations stopped, so I think it fair to say that the causal connection was pretty clear. I'll be the first to acknowledge, though, that I may have taken too much iodine for my size body. OK, I probably definitely took way too much, not heeding the old adage "if a little is good a lot is not necessarily better..." but oh, well.

I also hold onto the belief that somehow the B vitamins are heavily involved....we know taking them interferes with sinemet but at the same time, sinemet depletes B6, I think it is. All B vitamins are crucial for optimal brain health and function as well as other bodily functions. What a horrible catch-22....how and when can you take a B supplement when it interferes with a drug you must have? We haven't figured that out yet but are trying to see what happens if we take the B complex at night, after all the sinemet for the day. Taking it during the day was a disaster-might as well not have taken a pill all day.

I was reading "Unbroken", the story about Louie Zamperini, and how one of their fears in the POW camp was getting beriberi, which is a deficiency of thiamin, vitamin B1. Note how the author describes beriberi:

"There were two forms of beriberi and they could occur concurrently. 'Wet' beriberi affected the heart and the ciruclatory system, causing marked edema-swelling-of the extremities; if untreated, it was often fatal. 'Dry' beriberi affected the nervous system, causing numbness, confusion, unsteady gait, and paralysis...."

Sounds like a lot of PD symptoms, yes? Throw in the minerals most of us do not get and it's a mess.

While it's tempting to take supplements, re-reading parts of Dr. Wahls' book seems to recommend otherwise. She did not take very many supplements on her road to recovery, because, as she put it, she would have to take too many and also because there is a synergy between the nutrients in food which we have only just begun to understand. Instead, she focused on intense, dense nutrition, making each meal count as much as possible in terms of what it offered her cells.

Her opening analogy in her book is telling: plant genetically identical corn seeds, one in a rich field, one in a trash heap. Both will grow, but the corn seed grown in the rich field will be tall with three or more lush, full ears of corn on each stalk, while the one grown in the trash heap will be short, yellowed, with only one partially-filled ear of corn on it, if at all. It may be deceptively simplistic to think of chronic disease in this way, but the apparent truth in it very appealing to me.

Remember it took Dr. Wahls 9 months of a radically changed diet to even notice a difference in how she felt-that is a very long time when you are confined to a wheelchair and feel like crap. It was not until 18 months out that she felt things were reversing. While this may seem like a long time, it's a heck of a lot shorter than the decades+ it typically takes a new drug to get to market.....

So as of two weeks ago, we have been starting our days with a veggie puree I make by boiling up a bunch of vegetables, the bulk of which is celery and kale and an entire onion for sulphur (precursor to GABA, if I got that right), and when cooked soft, blending it up so you can get it down easier. Salt, pepper, and butter are added which make a huge difference in flavor (butter just makes everything better :)). I am going to start adding cabbage to my next batch as I have recently discovered it is apparenly very rich in the B vitamins. I should add here that we are trying not to eat anything unless we are actually hungry, as in, growling stomachs. I wonder if society's eating for the sake of eating ("it's lunchtime-gotta eat even if you are not hungry")has also had a negative effect on our blood sugar/insulin balances.

At any rate, a generous cup of this veggie puree for your first meal of the day (whenever you are very hungry, be it 6am or 10am), with some almonds (dopamine precursor), walnuts (omegas), brazil nuts (selenium), or pumpkin seeds (generally good all around nut/seed), and you are good to go for hours. And not so much chewing as would be required if you were to try to eat these vegetables unpureed. If anyone else tries this vegetable puree thing, please share how you feel it works or doesn't work for you..

This doesn't address the meat thing but I haven't done much research on meat other than to know that it is a main ingredient of the paleo diet. I do think, though, that if you crave a steak, eat it-there must be some reason your body is telling you that you need it. We should try to listen to our body unless it's telling us that we need that chocolate eclair :)

Person who runs the site was banned long ago for trolling and hawking his amino acid formulation here. One or two people from here tried his protocol and I believe one had some success, cannot recall user name....

I too, based on personal experience, think there is a glucose homeostasis issue. However, studies are all over the place contradicting. One finds a connection and another says the exact opposite, so don't expect a consensus statement any time soon.

Sugar is highly addictive and it has been noted anecdotally that many PD patients have a sweet tooth. I did eat too much junkfood when I was in my teens; lots of it sugar laden. Still, when we look at any theory like glucose
we have to try and see how it might influence myriad other things going in our noggin. This for me then says is this yet another pathway? or THE pathway for this thing called PD?

One interesting thing is that both diabetes and PD take a long time to develop and by the time symptoms are present it is too late in both cases. I wonder then if we don't all start out with a glucose processing issue so we start out with a common pathology that then forks between diabetes and PD?

I recall reading how our circadian rhythm is impacted by our glucose levels but it is actually a two way street. Sugar suppresses our arousal hormones (dopamine incude), so it makes us sleepy. Then sleep deprivation upsets our glucose metabolism leaving us craving sugar and making us more insulin resistant. Well as it turns out, people just getting diagnosed with Diabetes report poor sleep. I have heard so many people say that sleep abnormalities preceded their signs of PD.

I next wonder if dietary benefit from the ketogenc diet and the more recently the wheat germ supplemented diets were beneficial due to eliminating sugars and processed food?

Hmmm...

I don't buy it's too late
 

Thanks Laura, but I don't think it's too late...there are countless diabetics who lost weight, ate healthy, began to exercise and now no longer take insulin or are "diabetic": they have reversed their diabetes. I would even call them cured. I have seen this even in my own family. They are fortunate in that they knew what could be done to kick their condition: we do not, yet.

The human body is wired for survival, IMHO. This is a huge advantage over illness :)

Sorry, I was unclear. I meant in terms of a clinical diagnosis, not that it was not reversible.

I completely agree with you that we are hardwired to survive. This is why I staunchly (until shown otherwise) that our neurons are dying off. It just makes no sense that as complex and awe inspiring as our systems are that we would not have several mechanisms in effect to counter any hits we take.

The whole side of using our ability to self regulate and self heal is ignored and well we all know how frustrating that can be. I almost feel we should be demonstrating outside neuro clinics with signs reading "We have the right to produce our own dopamine" and to inform newbies to help themselves first through exercise, meditation, amino acid therapy before putting them on addictive replacement drug cocktails.

Laura :)