Parkinson's disease "What do successful p... - Cure Parkinson's
Parkinson's disease "What do successful people do to slow down PD progression?” Dr. Laurie Mischley. May 16, 2023
Very good video, Marc. I liked what she had to say and I like the way she is incorporating anecdotal evidence into her practice and reports. The healthy diet (MIND) might be a bit difficult for me so my preference would be for FMT capsules to maintain a healthy gut microbiome over time to insure that I don't slip on the diet too much to be effective.
There was a part in the video where she is talking about putting the trash out (autophagy) and how she says PwP are terrible about having enough autophagy to put all of the trash out on a regular basis, but at 44:35 minutes into the video she mentions how there is a 17 fold increase in autophagy at night. This corresponds with when melatonin levels are highest and melatonin can modulate autophagy up or down as needed by the body, but melatonin levels decline with age and even more so in people with PD, so those night time levels are likely insufficient to do a good job of increasing autophagy as needed to deal with the amount of trash that needs to be removed.
I found it very interesting that her number one supplement for PD showed as Ginkgo Biloba and B1 was just below statistical significance. At least that stat has increased her interest in B1 from zero to sort of interested.
With these surveys that she is now incorporating in her practice, she should be able to give further anecdotal evidence to support various supplements for use in PD.
She has become more focused on determining what is working for people now, more than previously.
Art
I didn't know FMT capsules were available? Are they?
I might contact her and see if she'd take me on as a patient. Although one can easily enough learn her formula. I know my microbiome is out of whack.
They are available, but as far I know not in the US to the general public.
The last US FMT study I reported on about a month ago for PD used the FMT capsules. They can be ordered on ice from private companies, but we don't know what testing has been done on the transplants or the donors. Not quite ready for prime time other than for C Diff. which the crapsules are used for in the US.
ncbi.nlm.nih.gov/pmc/articl...
Art
wonder what eating protocol the C Diff folks use when taking FMT caps
Last time I checked she was not taking new patients. But her Parkinson's school series is excellent.
I am not recommending this place Marc, but you can order crapsules and enemas. Microbioma.org microbioma.org/en/home-eng/
You might want to see this again: DESIGNER SHIT DOCUMENTARY designershitdocumentary.com...
are you taking these?
No way! Too risky for no proven benefit.
thanks for the feedback
There are an incredible number of FMT groups on FB where you can learn more than you need to know 
Here is one US supplier of FMT capsules, Marc.
drcarmencampbell.com/fmt-ca...
And one for clinicians wanting to use FMT capsules.
openbiome.org/fmt-access/pl...
Art
Thanks Art.
It says, “…for resistant C diff infections.” I wonder if that would limit its application/value for PWP?
Marc
Yes, FMT in the US is mainly approved for C diff, so you would have to find a doctor willing to use it off label use for PD. To the best of my knowledge that is the approved use for FMT capsules which is further discussed in this recent article :
fda.gov/news-events/press-a....
The tone of this article seems to be that the FDA is making it easier to get FMT capsules for C diff, but this probably will ultimately make it easier for off label use in other diseases where FMT has shown benefit in studies such as PD. Having an open minded doctor will likely go a long way in trying to get off label usage.
Art
I agree, I think it's only licenced for resistant C diff. - basically because it's such a horrible thing to have that the benefits outweigh the possible risks.That doesn't mean it wouldn't work for other things it's just that the risks might outweigh the benefits.
I'll never forget a brainy lecture I attended about it, a lot of which went over my head. But the panel discussed the story of how it was proved worthwhile - the guy with resistant C diff. who was so desperate he got his friend to give him a sample and put it where it was needed... But they also discussed subsequent research where samples cured the C diff. but came from someone who was obese - and the recipient became obese. At that point scientists decided to go slow for any other health issue as there was too much they didn't understand.
They have improved the screening and testing of donors as well as transplant washing methods to produce the newer and potentially safer WMT as discussed here :
ami-journals.onlinelibrary.....
Obviously not nearly as available as standard FMT, but it clearly shows that the technology is advancing at a bit quicker pace than previously and this is likely due to the continuing studies utilizing FMT in different diseases other than C diff, such as this :
healthunlocked.com/cure-par...
And this :
frontiersin.org/articles/10...
Art
Yes I have very high hopes for it. I was simply struck at the lecture by how reticent the multi disciplinary panel was being - and the reason they gave was the 'you don't know what you don't know'.
A combination of screening and washing must cover many bases.
From my study of FMT, I think changing the diet to a diet supportive of a good microbiome is critical to successful FMT. I might go as far as to say you would want to match the diet of the donor who had a desirable microbiome.
I think one of the major reasons FMTs fail is due to the poor diets of the recipient (not that you have a poor diet. Just speaking in generalities).
You are very likely correct, Bolt, but if you are not going to stick to a diet while using FMT, are you really going to stick to a diet like she proposed without FMT? Just trying to think in general terms. I think a majority of PwP are already well aware that a healthful diet is very likely to help their condition, but even so, they may not be sticking to a healthy diet. I'm trying to be real about eating, at least to my way of thinking.
Art
Ah, your point was the crapsules would motivate you to stick to the diet. I think I agree. If I am eating crapsules I am probably sticking close to my diet so I am not eating crapsules for nothing
The supplement list is also notable given the moderate appreciation for melatonin. Especially given the many favorable research results you have shown us, you would not expect this. Do you have a possible explanation?
Esperanto,
I think it is mainly because if you ask the average person what melatonin can do for our health, the answer will almost always be that low doses at 5 mg or less can help some of us sleep, but not all. The majority of people in the world have no clue about all of the health benefits that melatonin can offer to humans, animals and plant life. If I didn't post all that I have posted about melatonin on this forum, I think most forum members would think of low dose melatonin as just an otc sleep aid that may or may not work for them and I think people in general have little idea about the potential health benefits of high dose melatonin. If you go back 7 years, it was a similar situation with B1 and back then people thought that high dose B1 was a crazy and possibly a dangerous idea, but the anecdotal evidence in conjunction with more recent scientific findings has turned that around and B1 posts are now a daily item on this forum again as the word and user experience has spread slowly through the PwP community.
I suspect that the majority of people on her list who reported taking melatonin, are not taking it for PD, but rather they are taking it for sleep and may not even be aware of the other health benefits it may offer at higher dosing. Dr. Mischley may not even be aware of that. Hence the relatively low position on the list.
PwP are at increased risk for the number one cause of death in the world, Cardiovascular disease (CVD). Melatonin is a very good preventative and treatment for CVD and that alone is a very good reason for PwP to take it. There are no direct treatments for CVD, just mainly blood thinners, stents and diet. That alone makes melatonin an attractive supplement to take for PwP as well as the world in general and if there was a drug that could do the same it would be a blockbuster seller and every cardiologist and many doctors would be prescribing it to their patients.
Melatonin has shown that it can return, a known strong driver of PD, highly elevated oxidative stress levels, back to healthy control levels at just 50 mg/day. Melatonin can also significantly reduce the chronic low grade inflammation seen in PwP. PD is sometimes referred to as a mitochondrial disease and nothing protects mitochondria quite like melatonin, not even glutathione and I suspect this is why melatonin is produced directly in the mitochondria, to be able to almost instantaneously neutralize ROS that is a naturally produced harmful substance, by a normally functioning mitochondria, in abundance .
Melatonin has also shown benefit for the perturbed gut microbiome that is seen in PD.
I believe the age related decline of melatonin production in the body is a major contributing factor to the progression of PD when the mitochondria can no longer produce enough melatonin to adequately protect themselves and the cells where they reside from the constant production of ROS, every minute of everyday that is the norm for mitochondria.
Melatonin has also shown the ability to protect dopaminergic neurons in a disease where dopaminergic neuron damage is the norm.
So this is what I believe based on the studies that support these ideas. I know about it and I try to make others aware of it, but it is a hard sell and all I can do is highlight studies that support the use of melatonin to help us maintain our health. Other than that, I am at a loss for time and understanding of what more I can do to promote melatonin, not just for PD, but overall health. Sometimes I feel like I am just beating my head against a wall, but then I consider the fact that Dr. Mischley didn't seem to want to give B1 the time of day just 5 years ago, but now that she is doing her surveys or questionnaires, I see it has achieved a relevant position on her list and I suspect that position will continue to rise with time. I had never heard Dr. Mischley mention melatonin, but at least it is now on her list.
I believe that if your neurologist was aware of a drug that can do what melatonin has shown it can do in humans and PwP in particular, most neurologists would prescribe it as adjunctive treatment for PwP and that would make plenty of sense considering that the standard of care for PD can raise oxidative stress levels even further, but clearly we are not there yet and for me, the wait is a bit difficult.
Art
Thank you for being you, Art. You are greatly appreciated.
What an inspiring response Art. I couldn't thank you before because I was in a deep sleep thanks to.... the Melatonin. Merci beaucoup!
I use the Melatonin primarily as a sleep aid, because lack of sleep was one of the most debilitating PD symptoms. Even the probably in your eyes homeopathic dosage of 1 mg works for me. As you may remember, I had problems (heavy headaches) only with a slightly higher dosage of 2 mg, while that was even stimulated by my PN neurologist. Whether it is due to the greatly improved sleep or the bycatch of all the positive properties of Melatonin is difficult to say, but in any case Melatonin remains in my list “indispensable”. It seems to have an important role in the current upward development. Now I know that in about half of people Melatonin does not work as a sleep medication, but then you would still expect a positive rating on Mischley's list from at least the other half. I'm going to try again to increase the dosage by steps of 0.5 grams.
Thank you for saying so, Esperanto!
If any dose above 1 mg remains a problem for you, the following may be another way to increase your melatonin levels without side effects :
healthunlocked.com/cure-par...
Art
Very valuable. So maybe the beautiful sunny weather, working in the garden until late at night is the cause of the spectacular improvement. In any case, this latest contribution from you is also proof that you have no commercial interests in the Melatonin supplements. 😀
Hah! Melatonin is so inexpensive, I'd have to be selling it by the ton to make any money.🙃
My impression is that many of the reported benefits from red and infrared light therapy may be due to the increased melatonin production from the infrared light. Infrared from the sun is thought to penetrate the skull and is a much broader spectrum of the red range than most if not all commercial red light therapy devices. I think our bodies have evolved to make the most of what the sun has to offer and greater than 50% of the light from the sun that reaches our planet is in the red range, visible and invisible. Melatonin gotten in this way has no side effects, rather, just health effects.
Art
Marc,
I also don't get why MJFF made such a big deal out of the new method of testing for PD when her PD sniffing dog is faster, at least as accurate as the new test and is about as noninvasive as it gets and is no doubt very significantly less expensive!
Lets see, do I want to send my dirty q-tip by mail for diagnosis and get the results via email or phone or do I want a doctor visit and spinal tap???? Let me think about that for a moment.....
Art
Ha. Personally, I'm not into spinal taps, because the people who do them are often technicians/doctor assistants and when done wrong can cause problems.
Okay, I thought about it for a moment and I would only want a spinal tap as an absolute last resort, especially since it only has a 93% accuracy, which means it can still be wrong. Where my dogs at???
Art
Thank you very much for posting this Marc. I really enjoyed facilitating her presentation and I am delighted to see the positive comments. We are awaiting confirmation from our next speaker, Peter Tass on the vibrating gloves!
Peter Tass has a lot to say about the vibrotactile gloves in this video.
presentation is from 2 months ago
I am hoping when we see him in the next presentation he will have even more insights
on the time frame for research and making the gloves readily available to the public
Thank you Michel for making these presentations possible. Factually based, they give us glimmers of hope to prevail another day!
You are most welcome Biensur. For those interested we are also posting short videos on TikTok and Instagram. All details are on the website mentioned by my friend and partner PropertyTyphoon.
And for those of you new to NSB4PD, we now have a website to make access to the recordings and Podcasts easier
NSB4PD, shows a video from "our" own Daphne Bryan! 😀
That is an amazingly impressive site! Well done!
Thank you, we hope it helps people
The MIND diet reccomended by Mischley as per Chat GPT
The MIND diet, which stands for Mediterranean-DASH Diet Intervention for Neurodegenerative Delay, is a dietary pattern designed to promote brain health and potentially reduce the risk of neurodegenerative diseases, such as Alzheimer's disease. It combines elements of the Mediterranean diet and the DASH (Dietary Approaches to Stop Hypertension) diet, both of which have been associated with positive health outcomes.
The MIND diet emphasizes specific foods that are considered beneficial for brain health while discouraging others that may have negative effects. Here are the key components of the MIND diet:
Whole grains: Including whole grains, such as brown rice, quinoa, whole wheat bread, and oats, in the diet.
Leafy greens and other vegetables: Consuming a variety of leafy green vegetables, such as spinach and kale, along with other vegetables like broccoli, carrots, and Brussels sprouts.
Berries: Regularly consuming berries, particularly blueberries and strawberries, which are rich in antioxidants.
Nuts: Incorporating nuts, such as almonds, walnuts, and cashews, which provide healthy fats, fiber, and nutrients.
Legumes: Including legumes like beans, lentils, and chickpeas, which are good sources of fiber, protein, and other beneficial nutrients.
Fish: Consuming fatty fish, such as salmon, mackerel, and sardines, which are rich in omega-3 fatty acids, at least twice a week.
Poultry: Choosing poultry, such as chicken or turkey, as the primary source of animal protein, instead of red meat.
Olive oil: Using olive oil as the primary cooking oil and fat source, which is rich in monounsaturated fats and antioxidants.
Wine (in moderation): Optionally, moderate consumption of red wine, which has been associated with certain health benefits. However, it's important to note that excessive alcohol consumption is detrimental to health.
The MIND diet also recommends avoiding or limiting certain foods that may negatively impact brain health, including:
Red meat
Butter and margarine
Cheese
Pastries and sweets
Fried or fast food
It's important to note that while the MIND diet is designed to support brain health, it is not a guarantee against neurodegenerative diseases. It's always advisable to consult with a healthcare professional or a registered dietitian before making significant changes to your diet or starting any specific dietary plan. They can provide personalized guidance based on your individual health needs and goals.
Seems reasonable and doable without much effort. I may never break away from butter - instead of a full pat of butter I try to do half.
Berries are delicious with a bit of whipped cream. 😋😉
Mischley is rightly a fan of the MIND diet, which is indeed seen as the healthiest option for us to date. Still, in her schedule with 'good' and 'bad' food I suddenly saw chicken and frozen vegetables/fruit on the 'bad' side. I believe her recommendations are mainly due to the experiences in her own practice. It may be that she explained this further, but that I missed the details with my limited knowledge of the English language. Does anyone know if further research has been done on this?
Here is the quantified schedule. Once again I know Mischley is about the 'proven' effects, but I still hope for an explanation as to why frozen vegetables score so poorly.
One thing that occurred to me is that I wash all fresh fruit and vegetables before eating them but not frozen. Is it possible they have more pesticide/herbicide residue? Also frozen fruit and veg is usually in plastic packaging, potentially for a long time, unlike the fresh version.
Whether you want pesticide/herbicide as an additive, you still have control by choosing or not choosing an organic variant. However, it is becoming increasingly clear what the influence of plastic is on the foods. So you have a point here. By the way, the same goes for the plastic freezer bags I use to freeze our own fruit and vegetable harvest. I'm going to look at alternatives!
Clever!
But you also see packaging in plastic more and more often when buying fresh vegetables and fruit in the supermarket, under the pretext of sustainability. The products have a longer shelf life, so less waste. But here too, 'contamination' with food takes place, although the duration is less than with frozen foods.
Paying attention to this consistently is difficult. Mischley declares the use of plastic beverage bottles undesirable. That is still relatively easy to replace with glass. But also medicines and supplements that are often in plastic jars for a long time seem like a problem to me.
I agree. It's hard to get away from plastic. And of course it's all tied to the petrochemical industry so no trust there.
And we as consumers, because it is easy and cheap. It takes a huge effort to tackle that on a global scale, but let's start with ourselves. Now!
I stopped tinned foods and installed a Berkey Water Filter at home to reduce contact with plastic bottles. And no I’m not on commission. 🤣
It's also interesting that dairy such as cheese and milk are exposed to plastic in packaging and production. Phthalates (used to soften plastics) are possibly linked to PD. Here is an excerpt from a Guardian article that caught my attention. DEHP is a Phthalate.
'Milking machines use a lot of plastic and DEHP is free and very lipophilic (fat soluble), and milk is full of lipids, so it just pulls the DEHP out of the plastic tubing and into the milk,’ explains Robin Whyatt, professor of environmental health sciences at the Columbia University Medical Center.'
Possibly another mechanism through which dairy consumption correlates with PD development and progression?
That could very well be possible, although I think the duration of exposure to plastic in the milk and processing process is relatively short. However, the packaging, especially with longer shelf life products, may have a greater impact and more harmful.
I think it has to do purely with the consciousness of the consumer. Unfortunately, our children are not taught that at school.
Today I saw a shocking report from the programme “Keuringsdienst van waarde”(Inspection Service of Value) which addresses this kind of things. It was about bay leaves. In Turkey, the leaves are picked by villagers in the woods for 0.33€ per kilo. The trader in the village dries the leaves and sells this to the broker for 3€/kg. The exporter checks the leaves before export and gets 15€/kg. At wholesalers in Europe and the USA, this is done in small plastic bags and sold in the supermarket after months for 800€/kg. The reporter showed the Turkish pickers such a bag of bay leaves and the women said they would throw it away because it was so bad quality…
Most likely, the commerce has different interests than food safety, food quality , environmental aspects or fair trade?
It's no good. 8 keep trying to pass it by, but I keep seeing visions of my English teacher at school. That title should, of course, be "what do people do to successfully slow down progression in parkinson's disease? "
Ha. Right.
I managed to stay “schtum”. But it drove me mad too. 😬
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