The diverse functions of the select NPs organized in Figure 2 and reviewed herein bode well with many beliefs in the field while revealing some interesting trends. First, PD and MS share many characteristics, especially in terms of neuroinflammation and OS. It is therefore not surprising that NPs capable of ameliorating PD symptoms have similar effects on MS. In this regard, to select NPs targeting a cellular/subcelluar process of one disease, one can draw on the knowledge of NPs that had been investigated for the same process of the other. A large stockpile of NPs has been examined thus far for only PD or only MS. At least some of them can be repurposed reciprocally or even for other neurodegenerative diseases such as Alzheimer's disease and amyotrophic lateral sclerosis. Second, among the countless NPs, special attention should be given to those that have displayed efficacy in modulating/intervening multiple cellular processes and signaling pathways, owing to the complexity of both PD and MS. Third, from Figure 2 it is apparent that even an NP possessing different functions is incapable of counteracting all the detrimental effects inherent in the many factors or processes. Thus, the combined use of multiple NPs might be needed for regulating the different pathways. Fourth, NPs have shown great promise in addressing the pathological processes for which no clinical drugs are available. Even for processes that have been dealt with by clinical drugs, NPs offer as alternatives to afford equally effective treatments without severe side effects. Finally, an increasingly accepted notion in the PD field is that inflammation is significantly manifested. In particular, increased levels of pro-inflammatory cytokines, activation of the immune cells, and their infiltration through a more permeable BBB are hallmarks being recognized. As these processes have long been studied in the MS field, many NPs and their known functions are likely translatable to PD research and modalities. As the research continues to progress from cellular and rodent models to primates and patients, it is foreseeable that the vast pool of NPs should afford at least a few highly effective therapeutics with low or little toxicity.
I think drifting and reliance on so called natural herbal concoctions is regressive and dangerous. Beware and skeptical. Pseudo science and alternate truths, cons and shams are becoming the norm.
Like the above they make it sound so good when in fact it's going to end badly. SAD.
We are very vulnerable because we are mentally compromised and subject to the placebo effect,
This paper is a review of the research of the effects of natural products on Parkinson's and MS. Nothing wrong with it. Thiamine is a natural product and high dose thiamine has helped many here.
Example text from the cited paper:
"NPs [Natural products] have been identified to inhibit the formation of α-syn oligomers and fibrils, disaggregate aggregates into non-toxic forms, or disrupt their interaction with lipid membranes. EGCG was demonstrated to inhibit fibrillation and disaggregate fibrils, thus enhancing cell survival (48). Curcumin can prevent α-syn aggregation in LPS-induced PD model (117). Baicalein was shown to inhibit fibrillation of the wild-type α-syn and disaggregate fibrils, as one of us found with his co-workers (118). It can also disrupt fibrils of an α-syn mutant (119). Crocin can inhibit α-syn aggregation and disassemble mature fibrils (120). We found that ginnalin A is effective in disrupting the oligomerization and fibrillation of both α-syn and amyloid-β peptides (121), in line with the finding that an NP effective in inhibiting the aggregation of one amyloid species is often capable of acting the same way on another. Alkaloids such as synephrine and trigonelline can also inhibit seed-induced α-syn aggregation, increasing cell viability of SH-SY5Y (122). Squalamine (123) and trodusquemine (124) were reported to inhibit lipid- and fibril-induced α-syn aggregation and alleviate α-syn toxicity to cells. They also showed promising treatment results in animal model studies (124, 125)."
All things being equal you are correct. The problem I'm having is natural products are unregulated and not standardized.. So the conclusions are not medically reliably reproducible.
I've found myself trying natural products ex. Mucuna to discover frustration and disappointment because of the variations.
Therefore I've concluded that the natural products industry is broken and not salvageable.
You're not the only one to have reported that problem with mucuna. On the other hand, in the case of cinnamon, the active ingredient, cinnamaldehyde, is what gives it it's characteristic aroma, so if it smells like cinnamon should we have an indication it is good.
As a side point, I agree with the woman in the video: hope is a wonderful thing. It has such a powerful effect on the mind and therefore body chemistry. I find my regular mind / body therapy by my Mickel therapist has been a godsend! We need positivity, and humour. Negative emotions are so destructive .😃
Hope based on truth and goodwill is a great thing. My problem is the liars and scammers who take advantage of our positivity and good humour eventually resulting in negative and destructive emotions. There's gotta be a better way!
The medical industry has not been that good for me also but the natural products industry has been worse from the standpoint I've been following rabbit trails of lies and outright deceptions with no recourse. The industry needs to be regulated.
it can be said that a lot of the effect of many mainstream drugs is placebo too. And one need only read the side effects data sheet to see there are risks there too.
True the placebo effect is real in the mainstream drugs and the side effects and risks are there to. I wish the natural products industry was regulated and standardized like the drugs so that we could have some assurance and recourse. Otherwise what we have now is a new wild West open to liars and scammers taking advantage of us Parkinson's people.
Unfortunately, unless you want to wait 15-20 years for an official solution aĺl you can do is try alternative, available solutions and try finding your own way. Placebo is a good thing if it makes you feel better.
Emotionally I agree we can't just stand and do nothing. But doing the alternative, available solution s and trying to find out own way and enjoy the placebo effect has been abusive and false. I feel that it has created a scam my, unscrupulous industry cheating and taking us Parkinson's people to the cleaner s.
Regulation and standardized needs to happen. We need protection from the liars and thieves.
Hello Thal ~ I’ll put in my two cents worth. You do make a good point about quality control for supplements and “alternative” type products.
However, my HwP has gotten more help and relief from “alternative” products as well as the most help from “our” naturopathic doctor than any of the four neurologists that he has seen in the last 3 ½ years. Also, (and I realize this s not the case for every naturopathic doctor) but we can email her and will get an answer within 48 hours. Not the case with the neuro doc ~ we have to wait the two months till next appointment! Meanwhile my HwP gets to suffer!!!
Also, I have gotten so much help from the people on this forum!!!!!
So, all in all, I do not agree with you! Yes, we do have to do our own research and make informed decisions for our care or our loved ones care. Our health is a precious commodity that needs to be taken seriously and cared for, therefore ~ research, research, research and many questions!!!
Have a fabulous day!
PS ~ I do embrace placebo effect!! Who cares how the product is working if it's working!!
My sentiment is on your side. I've wished and delved into the so called natural way but I've found it to be full of bad products and people. you ve been lucky to have gotten some good from it but I think the majority of Parkinson's people are being taken advantage of leading to poor outcomes, grief, money, time waste,etc. it's just not right and needs to be stopped. The placebo effect cannot be justified if it is the result of lies and deceptions.
I feel most people miss how we are going to solve the problem and I can say it is not by ADDING something but by removal. You can add all the natural products in the world but will have no effect if you do not remove what caused the problem in the first place. We know a lot, one should remove toxins (from body and immediate environment), restore gut, remove certain foods, drinks etc, stimulate neurogenesis and the clearing of proteins through autophage. One has to remember most treatments from Shaman's, Oriental Medicine and Aryvedic Medice are evidence based. Yep 2000 years of clinical evidence - take this with this symptom and this happens - not a bad way to study the effects of natural products. The idea that the only valid study is a double blind placebo study was created for the benefits of Big Pharma alone. The biggest holdup is the willingness of an individual to make the needed changes to potentially stop PD from progressing. It is really hard. It is really tasking on the body and others. It takes daily commitment. Most won't commit but those that do could be on the verge of the biggest break through in 200 years. If you are using any natural therapies, ask yourself what have you done to remove possible causes (it takes many)? Here are some great questions: Are you generating BDNF, are you benefiting from autophage, are you generating stem cells, are you controlling vagus nerve activity, are you producing adequate short Chain fatty acids (SCFA) - just the beginning. God made the body to self heal, self regulate, and self regenerate. Self body and natural products can return the body to its original state of homeostasis if one is willing to go to the extreams. We all must keep trying God's way (never give up) and not always rely on man's next great pill because history has show most fail in the end. (just watch all the commercials on TV from side effects to law suits) I put my faith in God and not man to solve my problem - I am an active participant every day 24/7.
I like your approach. Remove the bad and let the good do its job. I've found that the so called good stuff is not what it is supposed to be. Your way will work but the industry need to be regulated and standardized. We patients need assurance that it s going to work as advertised. Now I feel that is not the reality. At least with the pharmaceutical industry we have some recourse. The natural products industry is the new wild West.
I don't think it's not going to work I've discovered that it actually doesn't work. Trying to save people 's time, money, grief, and health etc. What's wrong with that?
Placebo effect should also be avoided for the same reason because sooner or later reality will set in followed by grief and disappointment. Gravity is real.
I made no remarks about your feelings, just your conduct. There's no need for shouting when someone simply says something that you don't agree with. The rest of your comment is a demonstrable falsehood and not worth my time.
I don't understand WHY it works for them because there is no rational reason why it should work. And in my opinion based on my 8 years of personal experience and investigation that we are being used and abused to our serious detriment.
That's what has to stop and needs to be communicated to as many people who will listen and understand. I feel I have an obligation to inform and influence us patients that we are being taken for a ride when we could be undergoing therapeutic protocols researched and effective for our betterment.
THE FACT THAT PEOPLE ARE TELLING ME THAT IT WORKS FOR THEM IS NOT TRUE IN MY LEARNED OPINION BASED O N FACT, EXPERIENCE AND EVIDENCE.
That's what needs to be done regardless of intimidation and abuse directed towards me when it should be directed towards the perpetrators .
I also feel I have an obligation to save my fellow travelers from the fraud and evil . I also believe that my comments are not hurtful and downright mean because my intention is beneficial to reduce and redress the whole process of delusional behavior that we've been led into.
I cannot stop telling people what they should be feeling and doing, especially if it's wrong and unhealthy.
The reason I no longer attend support calls is your insistence on speaking this way. And as of now I no longer feel safe in this forum thanks to your behavior.
I feel I have an obligation to inform and influence us patients that we are being taken for a ride…
And who may I ask, suggested you take on this obligation?
Don’t want to deflate your self importance, but I suspect we are all going to follow our own instincts, as we shuffle along this long and winding road.
I also don't understand why we are so susceptible to false information under the guise of it being a NATURAL product.
As I've said using willow bark to cure a headache or prevent a heart attack is not true and may cause a lot of harm rather than using the real thing aspirin.
And anyone who promotes this should be called out and corrected even though sometimes their intentions are honourable. But wrong nonetheless.
My words are not the NOCEBO you accuse me of but they are the words of truth and goodwill. Choosing to not follow my posts anymore is regretful and sad for me because I care about Parkinson's people but if it protects your health then that's what you must do. Sorry to see you go. You've got a good mind, heart and positive contributions to be made .
Hope you change your mind and help get the word out about the NASTY being done to us under false pretences.
I also don't understand how ignoring what I or any fellow Parkinson's person has to say would be beneficial and protective of your health when it may be the truth that will improve your and other s health . And vice versa.
I don't believe in anyone anymore after Covid, I don't believe in governments or pharmaceutical industries, I don't believe in natural products because there aren't any, if I want a 100% natural product I know I have to grow it myself in my garden. And if I want to be treated I go to a doctor with a lot of clinical experience because I believe in competent and responsible people and not in corrupt regulatory agencies.
I don't buy anything, neither online nor in pharmacies. I trust fellow sick individuals like me more than medical research that seems to be driven by financial speculation on Wall Street rather than scientific evidence. Parkinson's research should not be treated as a gamble with investors, as has been observed recently.
IMO, without a specific biomarker for tracking the progression of Parkinson's disease, research is conducted blindly. Even the MJFF is aware of this situation and continues to fund critical studies in this area. Additionally, it is important to note that the placebo effect is not applicable outside of pain therapy.
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