Can we prevent, slow or halt, improve symptoms and reduce the severity of Parkinson's?

[parkinsonshereandnow]

"Some things from the past are gone

but others open a gap to the future

and they are the ones I want to rescue."

Mario Benedetti

Current Neurology, which has made undeniable advances against Parkinson's, tells us that the disease is degenerative and symptoms are getting worse over the years, despite treatments.

But what if there was hope to prevent, slow the progression of Parkinson's, improve motor and non-motor symptoms, and significantly alleviate the severity of the disease? We will leave the sensitive issue of a possible cure for future messages (especially in early Parkinson's).

On the sides of the main path of Neurology today (replenishing the missing dopamine with levodopa) there are important studies that offer us hope, another way of looking at the disease, in addition to the use of levodopa with inhibitors, dopamine agonists and the various surgeries and other therapies.

It should not surprise us because in 1992 the famous neurologist Stanley Fahn (the one who treated Muhammad Ali, among other celebrities) carried out a study -published in "Annals of Neurology"- with important doses of vitamin C and E (3 grams and 3200 IU, respectively) and managed to delay the need for levodopa or agonists by 2.5 years. Unfortunately, neither the author nor others have continued this hopeful path of research (for example, with intravenous or liposomal vitamin C, distributed doses of vitamin C every 4-5 hours to maintain high and stable levels in blood plasma, as shown in the Payadatty or Polidori studies in 2004); or with the use of vitamin E tocotrienols, possibly responsible for vitamin E-rich foods showing preventive and neuroprotective capacity (Sen 2004, Osakada 2004, Khanna 2006), and not supplements containing only alpha-tocopherol).

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.

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);

- 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 61%, and more (Grandinetti 1994, Hernan 2001, 2002).

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, epigenetics? (Maher 2002):

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

- vitamin D, 1200 IU for one year, all study subjects were still the same one year later, according to the scale UPDRS (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);

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

- vitamina B1 to improve all aspects, between 31.3 and 77.3 % in motor part of the UPDRS (Costantini 2013, 2015);

- 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 OWN DISEASE OR 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);

- level of B12 (Christine 2018, 2020; McCarter 2019, 2020).

- level of vitamin D (Suzuki 2012, Liu 2014).

CAVEAT: Without a doubt, it is not up to me to design new treatments and protocols, but rather to rescue this information from books, databases, forums, blogs, etc., and make it known to the community of all patients, families and caregivers around the world.

Hundreds of people around the world have been involved in this effort over the past decades. And we will achieve the goal...

(by Jesus Marquez Rivera - Parkinson's here and now)

[Buckholt]

Great post!

[Hidden]

I am leaving this post and your last both up on my screen to study further and implement. I am new to this forum and I am surprised by the quality of your posts. You are a gift to us with Parkinson's.

[JohnPepper]

You have not mentioned EXERCISE! Fast walking, together with Stress Management, a Positive Attitude, Mental Stimulus, and learning to consciously control movements, have all helped me to reverse most of my movement symptoms and I have lived the past 18 years, Pd-medication-free.

My Pd symptoms started in 1963. I was only diagnosed in 1992. I took medication for the next 10 years, during which time I changed from exercising in the gym to doing fast walking. I don't know for certain why it took so long to diagnose, but I suspect it was because of all the exercise I did in the gym for 22 years before I was finally diagnosed. I had to give up my job at that time, which removed a huge amount of stress and gave me the time to concentrate on getting better.

I have been able to help a large number of people , all over the English-speaking world, with walking problems, including freezing and shuffling, even those who were wheelchair-bound, to walk 'NORMALLY' within two minutes of being shown how to consciously control their movements. I have also been able to help Pd patients to overcome other embarrassing problems.

I am now 86 years old and am still fast walking, albeit at a much slower pace, and I am still enjoying life to the full, if it were not for COVID-19.

[parkinsonshereandnow in reply to JohnPepper]

Thank you for your comment, John. I have been following you for years, I have read your book "Reverse Parkinson's Disease" and I think you do a great job and you are a living example of what you stand for, like Mark Hurni or Annetta Freeman.

It is true that I mention only "physical exercise, stops it (Oguh 2014) and delays it (Tsai 2002);".

In a few days I was going to upload this table, which is the theoretical part of what you say and some brave neurologists defend in their books and articles. If this does not confirm what you defend....

EXERCISE, A "MEDICINE" FOR PARKINSON´S DISEASE.

Some of the extraordinary benefits of the "medicine" called exercise to treat Parkinson's:

1. Increases dopamine, promotes neuroprotection, neurogenesis

and neuroplasticity (Lau 2011, Tillerson 2001, 2002, 2003; Mattson 2000, 2003).

2. Improves mental or cognitive ability (David 2015).

3. Improvement of up to 40% in symptoms (Alberts 2009, 2011).

4. Prevents or delays the disease by up to 43% (Ahlskog 2011, Tsai 2002, Yang 2015)

5. Stops its usual progression (Oguh 2014).

6. Improves depression and sleep disorders (Butler 1998, Reynolds 2016)).

7. Lack of exercise increases the risk of Parkinson's disease (Xu 2010).

8. Improves the perceived well-being of the patient (Baatile 2000).

9. Fewer falls occur (Allen 2011)

In short, almost everything improves: motor symptoms (Prodoehl 2015, David 2016, Chung 2016, Bhalsing 2018) and non motor symptoms (David 2015, Reynolds 2016).

[JohnPepper in reply to parkinsonshereandnow]

that resultedMay I answer some of the points as follows:You are speaking about EXERCISE, which is not specific. So. I will answer the claim and whether it applies to FAST WALKING.

1. Agreed!

Fast walking achieves this, I BELIEVE, because it produces GDNF in the substantia Nigra and repairs the damaged Glial Cells, which then produce more dopamine.

2. I have no way of knowing whether this is true.

3. I would like to see a list of symptoms that are improved by exercise in general.

4. Need to know more.

It has improved my walking , putting food in my mouth, coordination and speech by 90% . But I cannot guess what % improvement I have had in all the other symptoms, if

at all.

5, Possibly!

In my case it has reversed many of my symptoms.

6. That is difficult to prove.

These two symptoms go up an down like a bride's nightie. In other words, I have not

achieved that result!

7. I agree, but there is no proof of that.

8. Fewer falls occur when our muscles are strong, therefore lack of exercise should

make falls more likely.

If I am concentrating on my walking I have less falls. When not concentrating I fall a

lot.

I hope this lelps you.

[Patrickk]

Bydureon (a.k.a., Exenatide), a repurposed Type 2 Diabetes drug is now in third-stage trials in UK for stopping Parkinson’s in its tracks — results expected 2023. Testing — mice, open label, double blind — has been going on for 10 years and it has been positive every time.

scienceofparkinsons.com/201...

According to a very sensitive test, Homeostasis Model Assessment for Insulin Resistance (HOMA-IR), 2/3 of Parkinson’s patients are supposed to be insulin resistant. IR may be treated with Bydureon (Exanatide). Just an angle that might get us one step closer to Bydureon.

cureparkinsons.org.uk/news/...

[LAJ12345]

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[alexask in reply to LAJ12345]

Who's using Restore Gold? For this, Mannitol, B1 and other supplements and medications fill out my survey on crowdwisdomsurveys.com I will publish all the results here. I think it would be really useful, to get some numbers behind the usage of supplements and how many notice benefit, or whether there are just a small minority benefitting.

[LAJ12345 in reply to alexask]

My husband is

[beehive23]

no.

[beehive23 in reply to beehive23]

i mean no you cannot control reduce or prevent symptoms especially with al 300 supplements that your liver still has to process.....been there done tah...for 100s $ a month and pd still here.......cheers

[AaronS]

Questions:Can you for certain say that your body would react to the supplements in the same manner as the test subjects?

Does any of it cross the Blood-Brain barrier?

Are any of the test subjects still using the same protocols to ease-reverse- their symptoms to this day?

Are any of the supplements listed going to conflict with each other or cancel each other out?

[parkinsonshereandnow in reply to AaronS]

Questions:Can you for certain say that your body would react to the supplements in the same manner as the test subjects?

No, but neither do the drugs. Neither is levodopa, nor even simple aspirin or paracetamol.

Studies of various kinds offer such certainties. And we have such an immense "arsenal" of antioxidants, anti-inflammatory drugs, mitochondria regulators, alpha-nuclein craze inhibitors, etc. that we can try and choose the best ones for each case.

Does any of it cross the Blood-Brain barrier?

Many can cross the barrier, such as green tea, caffeine, magnesium threonate, turmeric, N-acetylcysteine (NAC), etc.

Are any of the test subjects still using the same protocols to ease-reverse- their symptoms to this day?

I know the videos of the cases treated by Costantini and colleagues with vitamin B1. Villafañe was expelled from his practice at Mondor Hospital in 2015 (I think) in Paris, where he treated patients with nicotine patches and patients came from many parts of the world. I met several Spaniards and they were very happy. The 2003 Coimbra study with riboflavin has not been repeated in 17 years. I find this scandalous. 3 of the 19 patients recovered 100% of motor capacity at 6 months (not unusual as vitamin B2 stimulates the production of dopamine, glutathione and ATP).

Are any of the supplements listed going to conflict with each other or cancel each other out?

The recommendation is always to consult your neurologist or pharmacist. Unfortunately, not all the necessary studies have been or will be done. But Braun and Cohen's gigantic book Herbs and Natural Supplements, Volume 2 provides a wealth of information.

[sharoncrayn in reply to parkinsonshereandnow]

Your assessment of Coimbra's 2003 study is somewhat misleading.

#1 He required the elimination of all red meat and chicken which is somewhat contradictory given red meat is high in b2.

#2 All participants had low plasma riboflavin levels initially.

#3 He did not use the UPDRS-3 but instead used H&Y.

#4 Only 5 of 19 continued to improve in the 3-6 month period.

#5 Motor recovery was higher in the first 3 months than in the last 3 months of treatment.

#6 All participants continued their meds.

We might conclude that once b2 levels reached normal, motor improvements probably ceased. Therefore, unless a PwP expresses a flavokinase with low affinity for vitamin B2, leading to a decreased absorption (i.e. a specific metabolic deficiency), this protocol has certain limitations.

He does discuss the issue of high levels of hemin and low levels of ferretin as possible confounding variables via his red meat hypothesis.

He never followed with a clinical trial even though he recommended doing so.

Sharon

[AaronS in reply to parkinsonshereandnow]

Thank you for your response good Sir

[Buddica]

Bonjour, je suis entièrement d'accord avec cette approche. Je suis moi-même malade de PK depuis 2013 (j'ai actuellement 53 ans) et j'ai beaucoup travaillé sur le sujet car après avoir été licenciée en 2017 je me suis inscrite à une formation de naturopathie et j'ai pû développer tous ces aspects qui sont à mettre en lumière avec le rôle du stress oxydatif et la dysfonction mitochondriale dans la MP qui est pour moi un axe majeur qui explique beaucoup de perturbations dans cette maladie. Le souci c'est que personne (aucune étude sérieuse) ne s'intéresse vraiment à un protocole GLOBAL incluant ces molécules, un régime alimentaire ciblé, l'exercice physique, le travail sur la sphère émotionnelle et sociale. Les études visent une molécule une par une et concluent souvent à la non efficacité mais pour moi c'est une erreur car il faut tenir compte du fait que nous sommes un tout avec des systèmes interconnectés. Il faut cesser l'approche symptômatique et aller vers une approche systémique dans le traitement de cette maladie (comme d'autres d'ailleurs). Je m'applique moi-même ce protocole "GLOBAL" et je dois dire que pour le moment j'arrive à garder mes symptômes sous contrôle . Bon courage à tous

[Biensur in reply to Buddica]

Bonne après-midi. D'accord! Pouvez-vous nous dire ce qui a fonctionné pour vous (Peut-être en anglais) ? Merci.

[LAJ12345 in reply to Biensur]

Translated:Good afternoon. Okay! Can you tell us what has worked for you (Maybe in English)? Thank you.

[LAJ12345 in reply to Buddica]

Translated :

Hello, I totally agree with this approach. I myself have been sick with PK since 2013 (I am currently 53 years old) and I have worked a lot on the subject because after being dismissed in 2017 I enrolled in a naturopathic course and I was able to develop all of them. these aspects which are to be highlighted with the role of oxidative stress and mitochondrial dysfunction in PD which is for me a major axis which explains many disturbances in this disease. The concern is that no one (no serious study) is really interested in a GLOBAL protocol including these molecules, a targeted diet, physical exercise, work on the emotional and social sphere. The studies aim at a molecule one by one and often conclude in the non-effectiveness but for me it is a mistake because we must take into account the fact that we are a whole with interconnected systems. We must stop the symptomatic approach and move towards a systemic approach in the treatment of this disease (like others). I apply this "GLOBAL" protocol myself and I must say that at the moment I manage to keep my symptoms under control. Good luck to all .

[Bolt_Upright in reply to Buddica]

Oui! je suis tout à fait d'accord avec vous. Nous devons nous attaquer à l'inflammation, au microbiome et à l'intestin qui fuit. Nous devons traiter autant que nous pouvons en même temps.

[LAJ12345]

I think the main problems are 1 different people are missing different nutrients or have deficiencies in different enzyme pathways or have different exposures so what works for one might not be as effective for others.

2. There are so many different things to try, some might interact making others more or less effective. Some might benefit and some might make things worse. And food has a good deal of helpful compounds too depending what you eat. It’s very difficult to do a scientific trial like this as you would have to get similar people , make them eat the same things, exercise the same, have the same stressors and the same medications then get them to take50+ capsules a day.

Having said that my husband does take almost all the compounds above. But who know which have worked or how he would be without one or other of them. He did try a supplement free trial a while back when he was very anxious just in case it was one of them but deteriorated rapidly so I’d say as a whole they are helpful.

[Buddica in reply to LAJ12345]

Je suis d'accord pour dire que 1. selon les personnes les carences ou les besoins seront différents mais la prise en charge de la maladie de parkinson devrait commencer par un bilan complet de marqueurs biologiques permettant de déceler les carences et marqueurs de stress oxydatif afin d'adapter la stratégie nutritionnelle et micronutritionnelle et de viser à une médecine personnalisée .

[LAJ12345 in reply to Buddica]

Translated:I agree that 1. depending on the person, the deficiencies or the needs will be different but the management of Parkinson's disease should begin with a complete assessment of biological markers allowing the detection of deficiencies and markers of oxidative stress in order to adapt the nutritional and micronutrient strategy and aim for personalized medicine

[LAJ12345 in reply to Buddica]

Yes I agree but sadly I don’t think there will ever be a clinical trial for all these. It’s up to individuals to arrange for themselves. And without the trials neurologists are unlikely to recommend as these things are expensive and the government agencies won’t fund as there is not enough research.

[maier1959]

If there are so many supplements with a positive effect on PD, why people are ill and die due to PD. I think the main reason is that the effect of the substances vanishes under a sharp view. Placebo effect is very strong in PD, furthermore self fulfilling prophecy and publication bias play a role. The only scientific proof is the double blind, placebo controlled study. For vit.C , vit. E glutathione and NADH there are no studies which are positive for the supplements, but everyone, who takes such high doses should remember that a toxic effect may occur. So be careful with supplements, especially when you take high doses.