If people knew... what Parkinson's is.

If people knew... what Parkinson's is.

 

If people knew how hard, how very hard Parkinson's can be, it would help us spread this information. Okay, not all of it, but not even vitamin B9 to control the neurotoxic homocysteine, just the right amount of vitamin B6 in 10-25 mg per day as indicated in the levodopa prospectus, or vitamin D to prevent and slow down the disease as much as possible? These are things that are as obvious as mountains that someone finds on the way. How many celebrities, how many scientists have I written to, and they haven't even answered.

If people only knew how easy it would be to help today's sick people to lead a much better life and almost stop them from getting worse: but studies are accumulating (vitamin D, vitamin C, folic acid, glutathione, magnesium, B12) and indifference, even more so.

If people knew how easy it would be to help those who are starting out, to turn their disease into something perfectly controllable (just by lowering homocysteine, restoring glutathione and providing the appropriate vitamin D - which we still don't know how much it is, due to lack of studies, but we can deduce it from existing studies: 1200 IU a day, seems like the minimum - unless the doctor's judgment is better than ours. Before taking levodopa, maybe plenty of B6 and avocado.

If people knew how easy it would be to raise awareness of people who may have a genetic predisposition or a history of dangerous events (certain drugs, brutal stress that is difficult to handle, insomnia, constipation, etc. ), with campaigns of green tea polyphenols in drinks and foods, all the B vitamins, vitamin D supplements and teaching the population to replenish vitamin D reserves by taking the sun correctly, resveratrol, vitamin C from foods and supplements, magnesium in fertilizers, information in prime time TV series, etc.

If people knew what Parkinson's was, as I do (and millions of sufferers and family members do), they would be eating nothing but carrots and tomatoes all their lives, if it were proven that it could cure Parkinson's, and if this were true and not just an illustrative and exaggerated example.

If people knew what Parkinson's was, they would not try to make money on the health of a mother who does not know how she will care for her two small children in the future, of a son who sees his father fade away, hunch over and have terrible nightmares, or of a young man who sooner than anyone should feel the beast's paw, already feels the disease lifting the walls of Cavafis or the bars of Rilke's panther cage.

And I put all this in because today we can avoid it. This was Parkinson's seen with 19th century eyes still in 2020. And not with the fresh, revolutionary vision of hundreds, thousands of studies that teach us how to "starve" the Beast and those who have given it their souls.

My dear and admired Alexander Solzhenitsyn, who knew the fields and illness, exile and fear, began his great work "Gulag Archipelago" in this way that I would like to make mine for a moment:

"To all those who did not live long enough
to tell these things.
And to be forgiven
if I didn't know how to see it all,
or remember everything,
nor was I able to intuit everything."

Or the memories of the poet Ana Ahmatova in her "Requiem", of a terrifying force:

"INSTEAD OF A PROLOGUE

In the terrible years of Yezhov I stood in line
For seven months in front of Leningrad's prisons.
Once someone recognized me. Then
A woman who was behind me, with her lips
Bluebirds, who naturally had never heard my name,
He woke up from the numbness that was common to all of us
And he whispered in my ear (there we all spoke in a low voice):
-And you can describe this?
And I said:
- I can.
Then something like a smile slipped onto what had once been his face."

The tragedy that Parkinson's patients experience every day is of such magnitude as the suffering of that "Soviet" people, of whom Solzhenitsyn and Akhmatova spoke. I know what I'm talking about. They are not studies, they are experiences from then and now, some that I lived and others that I read about every day.

I insist that it doesn't have to be like that anymore. It's up to us to say: "it's over. That's enough." And to act with courage and prudence. But not a single step backwards.

In my own way and with my many limitations, I too will try to "see it all" and "describe this".

And no, however much you insist, no: two and two are not five. Neither were they in the 19th century nor will they be in the 21st. Not as long as we can avoid it.

 No one can say they didn't know.

Welcome to "Parkinson's here and now" in 2020.

Welcome to "Parkinson's here and now" in 2020.

We only offer hope based on Science. Our sources are neurologists and other neuroscientists, we recommend always consulting with the neurologist and accepting levodopa, but only as long as there is nothing better and improving its effectiveness and correcting its adverse effects with the nutrients shown in the studies. Can there be anything more orthodox?

 

If you're tired of searching for information among tons of false news, commercials, columns of smoke, like on a merry-go-round, you may find reason for hope here. But real hope based on Science: in writings by neurologists, hundreds or thousands of scientific studies from the last 50 years, and testimonials and experiences from sick people and family caregivers.

What works is what interests us, whether it is levodopa-carbidopa with coenzyme Q10 or polyphenols from green tea, with 10-25 mg of vitamin B6 or milk thistle, or the amazing vitamin D3 supplement from the Suzuki study in 2013 or the wonderful riboflavin or vitamin B2 from the forgotten and doomed thousand-times study by Coimbra in 2003. Always with courage to search and prudence to try, consulting everything to the doctor.

 

This is a summary of almost 14 years of searching and about 26 years of looking at the world of Parkinson's since my father's diagnosis in 1994. I estimate that the result of more than 30,000 working hours.

1) Studies on DISEASE PREVENTION OR RISK REDUCTION:

 - with folic acid or B9, 49 % (Religa 2006);

 - with riboflavin or B2, 51 % (McCormick 1988);

 - coffee (caffeine, niacin, quercetin?), tobacco (nicotine?) and non-steroidal anti-inflammatory drugs - not aspirin - by 87 % (Powers 2008);

 - with vitamin D in certain cases, 67 % (Knekt 2010);

 - with vitamin C, 40 % (Hellebrand 1996);

 - with vitamin E, between 32 and 39 % (Zhang 2002, Golbe 1988)

 - with flanonoids, 40 % (Gao 2012)

 - with beta-carotene, 32 % (Hellenbrand 1996)

 - with green tea, in regions where it is  

   usual: 50 % less Parkinson's (Pan 2003)

 - with coffee: usual consumption of 2-3 cups per day, 20-70 % (Ascherio 2001, Sobel 2000, Ross, 2000, 2001). Among those who never drink coffee, the disease occurs 5 times more often (Ross 2000, Hu 2007)

 - with tobacco, between 40 and 55%, and more (Grandinetti 1994, Hernan 2001, 2002, Gallo 2019).

2) There are several promising studies on the possibility of DELAYING, SLOWING PROGRESSION AND EVEN STOPING Parkinson's:

 - coffee, delays symptoms by 8 years, from 64 to 72 (Benedetti 2000);

 - green tea, delays symptoms 7.7 years (Kandinov 2009);

 - vitamin C and E, 3 grams and 3200 IU daily, for one year: delay of need for medication by 2.5 years (Fahn 1992).

 - Vitamin C stimulates dopamine production and enhances the effect of levodopa, making lower doses necessary (Zhao 2019);

- multivitamin (A, C and E): delay of symptoms by 3 years, identical twins, epigenetic? (Maher 2002).

 - physical exercise, slows it down (Oguh 2014) and delays it (Tsai 2002);

 - vitamin D, 1200 IU for one year, no worsening (Suzuki 2013).

 - glutathione (Sechi 1996).

 - coenzyme Q10 (Shults 2002)

 - creatine (Beal 2003).

 - antioxidants (Grimes 1988).

 - omega 3 (Youdim 2000, Saugstad 2006, 2008).

 - alpha lipoic acid (Araujo 2011).

 - vitamin E (Bischot 1993).

 - green tea, EGCG extract (Mandel 2002, Levites 2003).

3) IMPROVE SYMPTOMS, MOTORS AND NON-MOTORS, that is, the evolution of the disease:

 - vitamin B2 to improve mobility, 30 mg every 8 h, 44-71 % (Coimbra 2003);

 - intense physical exercise, 35 % improvement (Alberts 2009);

 - N-acetylcysteine or NAC, a precursor of glutathione, improves motor and non-motor skills (Monti 2019)

 - vitamin C to reduce oxidation and oxidative damage from levodopa residues (Riederer 1989, Pardo 1993, Berg 2001...);

 - milk thistle in capsules to protect the overloaded liver (300 mg per day, books by neurologists Lombard and Marjama-Lyons);

 - the folic acid to reduce the dangerous homocysteine (Ahlskog, Gonzalez Maldonado, etc.), alone or with B12 and B6

 - a low level of vitamin B12 worsens and the necessary improvement in motor and cognitive function (Christine 2018, McCarter 2019);

 - the omega-3 pearls EPA and DHA for depression and for many other things -thus avoiding excess protein, but essential in 50-80 grams to synthesize neurotransmitters- (Silva 2008);

 - Vitamin B6 from food, brewer's yeast or mild supplements, no more than 25 mg as mentioned in the levodopa leaflets - because without B6 there's no dopamine - and several neurologists in their books and studies, such as Ahlskog, Marjama Lyons, Siniscalchi.

 - vitamin B3 in appropriate doses and supervised by the specialist, to treat the mind and psychosis resulting from long-term medication (books and articles by the famous neuropsychiatrist Abram Hoffer);

 - numerous studies have found high percentages of neuropathy in Parkinson's patients compared to (healthy) controls Vitamin B12 deficiency is the most common cause (Zis 2017).

 - ketogenic diet (Vanitallie 2005). 43 % improvement in motor symptoms;

 - thiamin B1 (Luong 2012);

 - NADH (Black 1986);

 . vitamin B6 (Tan 2005);

 - GDNF (Gill 2005) - vitamin D regulates the gene that produces it;

 - glutathione (Sechi 1996).

4) According to the studies published so far, THE SEVERITY OF THE VERY DISEASE OR ITS SYMPTOMS depends on:

 - level of magnesium (Barbiroli 1999);

 - glutathione level (Perry 1982, Riederer 1989, Sechi 1996, Jenner 1998);

 - level of the toxic homocysteine (Yasui 2000, Muller 2001, Christine 2018, Saadat 2018);

 - level of B12 (Leigh 2018, Christine 2018, McCarter 2019).

 - vitamin D (Suzuki 2012, Liu 2014).

"To see what is in front of one's nose needs a constant struggle." George Orwell

We know enough II: that's the key to stopping it.

WE ALREADY KNOW ENOUGH (II).

What would I do if I had Parkinson's? 

                               As far as I know today, 3/31/2020.

 

This is a delicate question to ask for someone who does not have the disease. I asked myself that question many times while caring for my father (I write this again because there are many new readers, who will wonder how I dare to ask that question and propose an answer). And I have asked it again many more times since then. The truth is that in my father's lifetime we barely scratched the surface of Parkinson's. I will try to answer it honestly.

For the first time in the modern history of Parkinson's, thanks to magnificent studies, the Internet and the recommendations of some specialists (Ahlskog, Lombard, Marjama Lyons, Siniscalchi...), we can decisively influence the course of Parkinson's. We can change the Parkinson's labyrinth. To stop the degenerative waterfall with our own hands, which makes it a chronicle.

The key is not whether I will take Immunocal, Mucuna, Atremorine, Marian thistle or the Omega 3, but that all this must be done for the right reason in order to integrate it into a strategy to deprive Parkinson's of its food sources, to starve it:

1.- If Parkinson's feeds on OXIDATION (Jenner, Olanow) itself and more so on levodopa, that's why we take vitamin C, green tea, grape resveratrol, etc.

2.- If Parkinson's is fed by INFLAMATION (McGeer, Teismann, Sechi), that is why we try to take turmeric with a little black pepper (piperine), ginger, omega 3, vitamin C, pineapple (bromelain), red onion (quercetin), etc.
3 .- If Parkinson's feeds on a high level of HOMOCYSTEINE, so we look for foods rich in folate, folic acid or vitamin B9 (Ahlskog, Siniscalchi, Marjama Lyons), along with the richest natural supplement, brewer's yeast, and some mild supplement of 400 mcg or more (as taken by pregnant women to prevent damage to the developing child).
4 .- If Parkinson's is a lack of DOPAMINE in certain areas of the brain, so we try to give you enough vitamin B6 but not interfere with levodopa (up to 25 mg according to some neurologists and the prospects of levodopa, thanks to the carbidopa that carries levodopa since 1975). Vitamin B6 (the pyridoxal phosphate) is essential for converting levodopa to dopamine within the brain. Always consult your neurologist, because there are people who are very sensitive to vitamin B6. Sources: pistachios, brewer's yeast, vitamin and mineral supplements, etc.
5 .- If Parkinson's is fed by the weakness of the LIVER (already the traditional Chinese medicine related Parkinson's with a disorder of the liver more than 1000 years ago and there is even an encephalopathy caused by its malfunctioning), so we use the milk thistle (Lombard, Marjama Lyons). Also vitamin C, artichokes or glutathione.
6 .- If Parkinson's is nourished by SEDENTARISM and lack of physical exercise, we will give vitamin C (carnitine) and spinach (coenzyme Q10) to have energy and desire to spend it, while we take walks, do some exercise at home, practice the usual sports or dance tango, boxing well advised, etc. Always adapted to your own circumstances by the specialist.

And so a long etcetera: Vitamin D from the Sun and from supplements, omega 3 EPA and DHA pearls for Parkinson's in general and for depression in particular, etc.

As long as this is lacking in diets and treatments for Parkinson's, something very important will be missing.

When we begin to see Parkinson's in this way, we understand why it progresses as it does. And the ways to slow it down or stop it from progressing, depriving it of the environment it likes to keep growing. I think it's better understood that way. For explanations with scientific language we already have very good books, guides and studies.

Don't forget to always consult your doctor and pharmacist.

We know enough: that's the key to get out.

WE ALREADY KNOW ENOUGH (I).

This is the key to getting out of Parkinson's prison and the truth that we are reluctant to accept.

A call to change the way we view the disease and the treatments.

I know this from my own experience. And I've seen it in most of them over the last 10 or 15 years, which is when I've been most awake and attentive to these issues.

The most powerful treatment for Parkinson's is a change in the way we see everything: the disease, the treatments and the world around us (from large companies and health ministries to associations and the family itself).

If we do not see the disease in another way, we remain prisoners of the Parkinson's "labyrinth". Negative beliefs depress and paralyse us more than the disease. Two examples:

1. For 70 years it was believed that an adult could not create new neurons. Since 1998 it has been known that he can;

2. We have grown up with the idea and the fear that if we were born with certain genes, there is no solution: today we know that Epigenetics rules, that genes do not have the last word (vitamins like B12 and D or minerals like magnesium, activate or silence the genes, correct them).

I'm going to repeat several of the ESSENTIAL things I've learned over the years (1994-2020):

1. Vitamin B6 is as important in Parkinson's as levodopa and since 1975, when carbidopa is used, there are usually no problems with up to 25 mg a day (see the levodopa package insert).

2. If homocysteine is not controlled with vitamin B9 there is nothing to be done. Parkinson's will remain as we know it today.

3. The possibility that Parkinson's disease is caused or facilitated by multiple deficiencies (dopamine is one of them) opens up a new world.

4. Current Medicine has entered a dead end (possibly, it is just my opinion). dealing with parkinson's only with levodopa-carbidopa and a few other medications (without vitamins B1, B2, B3, B6, B9, B12, C, D, etc), is like going into a boxing ring to fight a boxer and having one hand tied behind your back (maybe both).

5. Until something better than levodopa is discovered, we should make the most of it: minimum necessary dose, enhance its effectiveness with vitamins c and b3, correct its harmful effects with vitamin c, green tea, glutathione, milk thistle and vitamin b9.

6. Even if nothing of this is true, it is not harmful. And the mere fact of having hope, changes the prognosis of the disease in a decisive way. But it turns out that not only are there thousands of studies on the subject, but many more keep coming out. With only 100 studies from the last 3-5 years we could change everything.

7. We already know enough to significantly improve the lives of the sick people. But we still wait for a miracle results study, which seems to me as impossible as finding a unicorn. There is no pill or surgery capable of changing by itself the complexity of the damage that Parkinson's produces year after year (glutathione deficiency or excess homocysteine would be catastrophic if they were the only problem).

8. The house starts to be built on the foundation, not on the roof. If we don't control homocysteine with vitamin B9 or the oxidation of levodopa with vitamin c, there is little point in tango or boxing (very good things, but they form the roof, not the foundation).

I invite you to read what is written on the wall (at least the last 30 publications). But reading them over and over again will pierce the thick layer of prejudice and error that we all have about Parkinson's (in my case too, of course. I have to fight every day to get rid of them). If we don't look at Parkinson's in another way, there's nothing to be done.

No single supplement is strong enough against Parkinson's. The disease is a giant that can only be defeated by an army of "dwarves".

And I invite you to discuss any changes with your doctor and pharmacist (caution).

Remember, courage to be informed and prudence to make changes.

Parkinson's in a nutshell: No vitamin B6, no dopamine.

PARKINSON'S IN A NUTSHELL: 

NO VITAMIN B6, NO DOPAMINE. 

The more homocysteine, the worse the Parkinson's?

An elevated level of the amino acid homocysteine in the blood is neurotoxic and has been reported as a very important risk factor for developing Parkinson's, as well as cardiovascular disease and dementia in the general population (McCully 1969, Boushey 1995, Seshadri 2002). Homocysteine increases oxidative stress, compromises mitochondrial function, and ultimately leads to neuronal apoptosis or death. In addition, a strong link has been found between homocysteine and DNA damage and excitotoxicity. All of them with an essential role in neurodegeneration (Mattson 2002, Zoccolella 2006. Martignoni 2007).

A level above 20 micromoles/L, increases the risk of developing Parkinson's up to 8.64 times (Saadat 2018). The title of his study is very clear: "Serum Homocysteine Level in Parkinson's Disease and Its Association with Duration, Cardinal Manifestation, and Severity of Disease." It's worth reading again...

Parkinson's patients have high homocysteine and those taking levodopa even higher (Mattson 2003, Obeid 2007). Some authors claim that a high level is largely responsible for the current progression of the disease (Yasui 2000, Muller 2001). This seems so, so important to me, that I think it's worth reading several times...

It also crosses and damages the blood-brain barrier, which is responsible for protecting the brain (Beard 2011, Kanath 2006, Tyagi 2008). A supplement of vitamin B9 or folic acid (alone or with vitamins B6 and B12) has been shown to reduce the level of homocysteine (Reutens 2002, Siniscalchi 2005, Postuma 2006) and damage to the aforementioned protective barrier (Kalani 2014).

A diet rich in vitamin B9 prevents Parkinson's by 49% (Religa 2006).

Neurologists such as Alhskog, Marjama-Lyons, Siniscalchi, González Maldonado, etc. recommend the use of B9 or the three B vitamins (B6, B9 and B12).

Already in 1998, Malinow published the very interesting results of his study Fortification of cereals with 499 and 665 mg of folic acid,
increased vitamin B9 in the blood by 64.8% and 105.7%, respectively. And homocysteine decreased by 11.0% and 14.0% (Malinow 1998).

The use of folic acid is very well tolerated. Pregnant women are prescribed 400 mcg/day to prevent malformations in the fetus. Ahlskog recommends to its Parkinson patients 2 mg B9, 25 mg B6 and 2000 mcg (2 mg) B12 to control the levels of the dangerous homocysteine.

If Parkinson's could be seen as a parasitic plant that feeds on host roots, homocysteine would be one of the main, if not the most important, root. And its "antidote" is something simple, cheap and safe (Nallamothu 2000): vitamin B9 or folic acid, folate... alone or together with vitamins B6 and B12.

---

I would like to recall the work of two scientists. 

The first one, the American pathologist Kilmer McCully, who was a pioneer in the investigation of the damage produced by high levels of homocysteine, especially to the cardiovascular system (1969) and who left us a surprising phrase: 

"Homocysteine is associated with more than a hundred diseases".

The second, to the Spanish neurologist Rafael González Maldonado, author of the book "Heterodox treatments in Parkinson's disease" (2004, 2013). He showed us already in those early dates the decisive importance of folic acid and homocysteine in Parkinson's disease. His book was key for my father and me. It has not yet been translated into English and other languages, despite being one of the most important books I know for patients and their families. One of the paradoxes of the Parkinson's world. 

Controlling homocysteine with vitamin B9 is still a pending subject in the Parkinson's world. I think it would change the disease as we know it today. Another one of those paradoxes that is so difficult to explain. 

WARNING: Despite the safety of folic acid or vitamin B9, it is always advisable to consult a neurologist in each case.

3 Keys to Improving Mobility in Parkinson's. RIGHT NOW, not in the future

FORCED EXERCISE, VITAMIN B2 (RIBOFLAVIN) AND NAC (N-ACETYLCYSTEINE, GLUTATHIONE PRECURSOR)

In my opinion three are the keys. There are many more, but I have to keep looking for information.

1) Physical exercise: Alberts (2009).

Intense physical exercise on a static bicycle (especially forced exercise done in tandem with a healthy person) provides an improvement in motor symptoms of around 35-40%, similar to a dose of levodopa (Alberts 2009).

With Forced Exercise (FE) the motor scores on the Unified Parkinson's Disease Rating Scale (UPDRS) improved by 35%, while patients who did Voluntary Exercise (VE) showed no motor improvement (although good for other aspects of health and against Parkinson's).

2) Vitamin B2: Coimbra (2003).

The study focused on administering 30 mg of riboflavin every 8 hours (90 mg per day) and eliminating red meat from the diet for 6 months. There was an improvement in mobility of between 44 and 71%.

Why is riboflavin or vitamin B2 so important in health and Parkinson's? Two words: vitamin B6 and glutathione. It activates vitamin B6 to its coenzyme form that converts levodopa to dopamine, AND helps in the synthesis of glutathione (protects neurons, mitochondria, liver, etc.). In addition, it prevents the risk of Parkinson's disease by 51 % (Powers 1988).

3) NAC (or N-acetylcysteine): Monti (2019)

Weekly intravenous infusion of NAC (50 mg/kg), plus daily oral doses (500 mg twice a day) for 3 months. There was an increase in DAT (dopamine transporters) from 3.4% to 8.3% and a significant improvement in Parkinson's symptoms (this study sheds more light on Dr. Perlmutter's impressive videos of intravenous glutathione, available on the Internet).

We know that the level of magnesium (Barbiroli 1999), glutathione (Sechi 1996), and the neurotoxic homocysteine (Yasui 2000, Muller 2001) largely determine the severity of symptoms and duration of the disease. IT HAS TO BE READ A HUNDRED TIMES.

Magnesium treonate (the only known form of magnesium that crosses the blood-brain barrier or any other form such as chloride or citrate, NAC (or N-acetylcysteine, the precursor to glutathione) and vitamins B6, B9 and B12, which are able to control the level of homocysteine in two different ways, could be key.

NOTE: Although you should always consult your doctor and pharmacist, it is even more important in the case of other diseases and medications. Remember, courage and caution.

Any form of exercise authorized by the doctor is good, from walking to forced exercise, to dancing, water exercises or tai chi...