Parkinson's disease "What do successful people do to slow down PD progression?” Dr. Laurie Mischley

hello everyone my name is Michelle thank you very much for joining us today uh where we have extremely fortunate to be able to listen to Dr Laura initially we will be talking to us about what do successful people do to slow down PD progression which is hard to find a more relevant topic to be frank Dr Michele is a net neuropathic physician and researcher specializing in the treatment and management of Parkinson's disease with over 20 years of experience in the field she has become one of the world's leading experts in the use of natural therapies for Parkinson's as you mentioned in the invitation to this session I hope you have all like me generated a pro PD report before the presentation but for those of you who are watching a recorded version of this session the property app has been designed as a tool for assessing and tracking tracking symptoms of severity over time it is freely available on the IOS and Android app stores and more details are listed in the description of this video doing the property using the property app before the video recording or reviewing the video will help you get a better understanding what you're going to be discussing tonight before we start I would like to remind everyone that this session is for information education purposes only so if you're seeking medical advice diagnosis or treatment you should consult a medical professional it would be time for questions at the end of this presentation please do use the Q a function at the bottom of your screen please do not use the chat for questions use the Q a function so for those of you who don't know us yet no Silver Bullet is managed by Markland bear and myself with the aim of sharing Parkinson's expertise we aim to help you and frankly to motivate you to become well-informed generalists in your condition in order to make informed choices on how to adapt your lifestyle to slow down disease progression we are organizing Zoom sessions like today's with researchers and PD Specialists to update you on the days that this advances in science and medicine nutrition exercise and Wellness we post the recording support sessions on YouTube and specific time and you're also post short videos on Tick Tock and Instagram details are available in the chat section at the bottom of your screen as well as on your brand new website no Silver Bullet for pe.com okay let's come back to today's topic and to Lori who will be talking to us about what do successful people do to slow down the knee progression Glory the statutory thank you very much Michelle and Mark for the invitation to be here today and let me share my screen are you seeing what you're supposed to be seeing perfect great all right so today's talk is about my search to help you all find the recipe for success and what I'm talking about are what are the choices habits and circumstances of the individuals who have your diagnosis who are doing the best over time I have a couple disclosures I'm going to be touching on most of these I work at Seattle Integrative Medicine I do research at University of Washington in Bastyr I have research funding from Michael J fox Foundation I run online Parkinson's school and camp and a dog detection thing in the app as we already talked about so my goals here for today are truly to upend your entire concept of Parkinson's if I can do anything today it is to have every single one of you leave a little more convinced than you started that this disease is modifiable I want to change your perspective and truly break down this old outdated Paradigm I think many of you are walking away with I love chat GPT and it was really fun to ask chat GPT about the history of the saying no Silver Bullet and I learned all about the werewolf legend and needing a silver bullet to take out werewolves um at a certain point in history and so I really kind of wanted to cling to this idea that no Silver Bullet implies there is no no complex issue like Parkinson's disease something this complicated and diverse and far-reaching is likely to have a very simple easy solution be warned of things like snake oil right so let's hold on to this concept for a minute because I also think it's really important to learn from history so we had a period in history where there was essentially an epidemic among some people more than others of a disease called scurvy people literally bled to death all of their connective tissue began to break down it started with fatigue and easy bruising but it very quickly went to bleeding gums and you know you'd bump somebody and their skin would break open if you had your appendix removed the old appendix scars would pop back open if you fractured your Activia when you were a teenager that that healed bone came unhealed people literally bled internally until they died two million people died of scurvy and as people died I mean think about that Sailors predicted a 50 percent death rate when they loaded up their boats that's mind-blowning when you read history there were some hints about what was going on quote there seemed to be a general acceptance among seafarers that fresh produce was helpful though no one knew why in 1953 they the ship got stranded in the St Lawrence River in a tea made by Native Americans stopped the sailors from dying they had record but it took years for people to listen and eventually after a couple false starts we actually did learn that you could cure scurvy with lines and for 200 years as long as we have known about Parkinson's for 200 years we cured scurvy with limes before we discovered ascorbic acid and what I'm here to argue is that we have been trapped in a paradigm where a researcher can't get their study funded until they first discover ascorbic acid the funders are essentially saying you come to me with the answer and the mechanism of action and the proposed mechanism by which you think limes might be helpful and then we will consider funding your lime study and what I'm here to say is I think we're going about it wrong I think our priorities have been messed up we're asking the wrong questions and if limes work I don't care why they work let's use limes right so that's my quest are there simple easy answers right in front of us that seem to be working that we could be using whether or not we understand them so the questions I have for the group here is ascorbic acid a silver bullet for scurvy is niacin a silver bullet for pellegra iodine for cretanism thiamin for berry berry I would argue that nutritional deficiency syndromes are complex problems with very simple Solutions so epidemiology is the study of populations it is essentially learning how to ask the right question in the right way to get the answer that the community most wants to know traditional epidemiologists study what does it take to get Parkinson's disease clinical Epi starts the day of diagnosis and asks what are the people doing that are affecting or impacting rate of progression moving forward there have been a lot of studies we have Decades of traditional Epi studies what was kind of new was to bring that forward and start to look from the point of diagnosis forward are there things that people are doing that impact rate once you're diagnosed so the concept is super simple this is a very diverse disease every one of these Green Dots is a real person with Parkinson's and the blue line that you see running through the center is the pre average rate of Parkinson's disease progression in our study cohort at diagnosis most people have a score of 550 and it gets worse at about 40 points per year what I set out to do is to use the diversity of the cohort to my advantage let me look at those people who are doing an amazing job 20 years into Parkinson's disease they're calling their quality of life excellent who are those people and what are they doing differently than the people in really rough shape in the first five years so before I dive in I just want to say it's not just about the red pill or the blue pill or is it broccoli or is it the cauliflower this isn't just about what to take one of the problems that we have been running into for the last couple hundred years is we're asking the question wrong these Downstream late stage symptoms like Tremor and rigidity are a distraction right this is a metabolic disease with neurological consequences there is this community bias that the more expensive and invasive and technologically driven the more it's real medicine right Physicians and researchers also have to confront our own biases if we're going to jump get over this hurdle most stocks have not been trained in nutritional medicine I think the average MD gets about four hours of nutrition education in their entire medical school curriculum right so if they're not learning about the role I mean nutrition is the study of what does a human body need to get from our environment in order to survive and thrive I can't make vitamin C I need to get it from my environment so the study of nutrition is what does a human being need to Source in order to thrive and if conventional medicine is only devoting a couple hours to that topic in a five-year Medical School curriculum your doctor isn't being trained in nutritional medicine and that's not the right person to ask right so we're in this Loop over on the left you know I have a hard time studying Parkinson's disease prevention because we have no way to get to people early even if we could get to people early we don't have a way to slow disease progression and even if we had a way to slow progression we don't actually have a way to measure slope and so we are caught in this circle where until we do one we can't do the other and it doesn't make sense to do one without the others so what I started to do is just chipping away at all of them on my own I have been working on a way better way for tracking a better way for screening and some strategies for disease modification and that's what we're going to talk about today Foundation the definition of Parkinson's is changing in real time when I started working with Parkinson's 20 years ago the concept of Parkinson's was what you see in the center the elderly man with the hunched posture with Ray Chaudhry introducing the concept of non-motor Parkinson's disease with rock steady boxing with there is a whole world exploding of as as people get die more and more people are being diagnosed younger and younger this is in my career I've watched this shift from an old people disease to a midlife disease how do we maintain our health and our youthfulness and our Vitality with Parkinson's that wasn't the state of the world 20 years ago so when we ask Physicians to describe Parkinson's they say rigidity slowness Tremor stooped posture when we ask patients to describe Parkinson's fatigue impaired handwriting loss of smell cognitive problems muscle pain sleep problems I'm not even sure that we're studying the right disease I'm not sure that Physicians are working to help you with the same problems that you have what you all are telling us this disease is is not what the researchers are focused on according to our scale about two-thirds of most people's symptoms are non-motor each step of the way obviously it's this has a lot to do with how we've set up the scale but this is what we see when we look at our data over time in my clinical experiences that each one of you is dealing with something a little bit different this is essentially like whack-a-mole you get new symptoms you go to the dock and try and hide them right and it's just one comes up you fix it you know and your whole life is defensive and what I would like to encourage all of you to do is play a stronger offensive game imagine you have been put in charge of the offensive line of your team the conventional approach to Parkinson's plays amazing defense you have an amazing goalie you have an amazing defensive line we can hide your symptoms really really well where the community has failed miserably is offense and you are the person who is responsible for changing that you cannot wait for your physician you cannot wait for the researchers we are at your employee you are in the driver's seat and you are coming to us to ask Our advice it's totally up to you whether or not you take it so what I set out to do is find a universally acceptable goal how can I make everybody happy what scale could we use for measuring Parkinson's disease severity that would be universally acceptable and what I went with is fewest possible symptoms highest possible quality of life for as long as possible and each one of you some of you are going to want to play with your grandkids some of you are going to you know want to work long enough to be able to retire by your little Cabin in the Woods some of you every one of you has your own little things you're after but those top three I think we can argue are probably universally acceptable I am going to argue that it is really really really important to quantify your symptoms it's not enough to say you're tired you need to let your physician know how tired are you for a whole bunch of reasons they need to know how important this is how severe this is and how in the world are you going to know if you're trending towards better or worse if you don't give it assign it a numerical value so we're not going to get into this this is a statistical thing but it's it's the concept that everything I'm about to talk to hinges on and it's something that is kind of mind-blowing that this has escaped our community for so long but it's a statistical thing when you are measuring a scale the sensitivity of a scale what we're talking about is the ability to detect true differences in a population how well does a scale do that so there are by binary questions true false there are ordinal scales on a scale of zero to four how bad is your handwriting but continuous outcome measures where you have something like this slider bar you get a more accurate result it is more sensitive to change you are less susceptible to bias you have profoundly greater statistical power when you use a continuous scale whether or not researchers or Physicians end up using the one that I built is totally up to them but I am absolutely sure that to get the level of sensitivity we're after they're going to have to use a continuous skill it's not I I believe we are at 20 some phase 3 double-blind placebo-controlled trials have been conducted on Therapeutics that worked in Petri dishes and test tubes and rodent models and phase one and phase two trials but failed in phase three trials and at some point we have to ask are we really that bad at choosing Therapeutics or could we be using scales that aren't sensitive enough to detect what we're looking for so basically I worked backwards I knew what I needed was a continuous scale I knew it needed to have motor and non-motor symptoms I knew it had to have be sensitive early in the disease I knew it had to reflect the patient experience because a doctor can't see your pain in insomnia and constipation and fatigue um and so here's what we came up with we list 35 common symptoms with part of Parkinson's and ask you to estimate on average over the last seven days how severe have any of these symptoms been if you have not had any dyskinesia and dyskinesia has not been a problem in your life you slide the tab all the way to the left if your Tremor has been about three quarters of the week I have been frustrated with this Tremor you slide it about three quarters of the way over to the right and you go according to your standards and rate on average this week how bothersome have any of these symptoms been and what you can see is the average rate of Parkinson's progression over time so I do want to draw some attention so we have validated this we have a formal validation paper under review right now and we have already previously published um data showing that the scale correlates with traditional outcome measures but there is a better validation study coming out this is the ongoing study it's called modifiable variables in Parkinson's disease and the scale that I built was to get this study done the whole reason I built that skill in the first place was because this is a study I wanted to do what are the successful people doing differently than the people are progressing like average who are those people in the green circle what choices are they making that the people in the red circle are not making and vice versa just a little word of um perspective here you might not like the taste of the medicine this isn't my opinion I'm not here to make you happy I'm not here to sell you on an idea it's not like I have some concept of what I want you all to be eating I'm just the messenger the only thing I did was I went out I surveyed 3 000 people with Parkinson's and I asked who are you how are you and what are you doing and I promised myself that I would not filter anything just be the messenger give you the wrong data um just a little note on how I use this in my clinic every one of you can generate your own Parkinson's report but I do set goals with my patients before I see start my clinic day I show up an hour early and I pull the reports of every single person on my schedule for the day before the day starts I know when I'm worried about Betty's constipation in Steve's sleep and Bob's fatigue and it has improved my quality of care so much to be able to see what kind of trajectory each person is working moving on here's just a little close-up of what that looks like and how I treat people differently that person in the top left who's more than twice as severe as other people diagnosed eight years ago as opposed to the person on the top right half is symptomatic I don't worry about the person on the top right why are you here you've got this figured out go you know the person on the left needs my attention this is personalized medicine it is insane that this is not routine so this is what a pro PD report looks like like I said they're free iOS Android I'm not making money off of this we have people already using it in 121 different countries so that is super exciting okay so back to you and how I want you to use this I want every one of you to choose a DOT set a goal some of my patients will look at this and get really competitive and determined and say I'm going to be a DOT you've never seen before I'm going to be 35 years with this disease in the green zone you watch right and then there are other people who are like you know what if it means I can cheat and have french fries once in a while blue Zone's good enough right so you all have to decide how bad do you want it how long do you plan on living with this disease and how hard are you willing to work for it we'll get into the Therapeutics in a minute the point of this slide is I just want to show you that the earlier you get started the better and so my goal in for myself in my clinical practice is I want every single one of my patients to make it to their 100th birthday with a pro PD score less than a thousand I want you to live until 100 years old with your quality of life good or excellent so if you were to be diagnosed at the age of 50 this is how much you would have to reduce your slope of progression to meet that goal compared to average and you know what I will say is 50 years ago when a person was diagnosed with Parkinson's the average on average they died within eight years I would argue we have already had as much as much improvement as you would need to meet the goal I'm proposing is how much improvement we've already had in the last 50 years this is attainable this is doable and if you get to it early you can really slack you know what if we can get to your kids and your loved ones before they get a diagnosis and also start to implement some of these disease modification therapies they can live in excellent quality of life with Parkinson's for a very very long time so getting to it early is a really big part of this so here's just a slide that shows the earlier the same amount of improvement matter makes a much bigger more relevant difference the earlier you can start okay so let's just look at how we use a scale in clinic first of all epidemi epidemiologically we have 439 people who when they joined the study were not on medication dopamine-based meds over the course of their participation in this study they started levodopa when they went from not on meds to starting meds there was an improvement in Pro PD scores specifically the symptom that got the best that improved the most after starting levodopa was not Tremor it was not slowness it was not rigidity it was anxiety and muscle pain we talk about levodopa like it's only for motor symptoms our data actually suggests non-motor symptoms improve with levodopa as well so that's pretty fascinating um in terms of what else can we is this scale able to detect up top you will see the more exercise a person does the more days per week of exercise a person does these fewer symptoms they have over time people who say true to the statement I am lonely being lonely is worse for you than seven days a week of exercise is good for hey how easy is it to go play table tennis with a friend play Pickleball with a friend go to Rocksteady boxing dance for Parkinson you can feed two birds with the same seed right if you exercise with friends ching ching ching points points points let's start thinking about this and I don't think this is um bad data I mean there is a lot of research that suggests loneliness is detrimental to health Alcoholics Anonymous I think is a beautiful template to use their their there has been research about there's something about the community coming together that is actually therapeutic um here you can see these are called radar charts the bigger the maple leaf looking thing in the center the more symptomatic a person is and so on the left the The Thin Line out on the edge shows the average symptom severity of lonely people with Parkinson's disease versus people who say faults I am not lonely they are about half asymptomatic and you can see which symptoms are most important motivation initiative apathy depression anxiety sleep fatigue sexual dysfunction much worse among Lonely People over on the right you can see the first two days a week of exercise don't matter much people in the Orange Line people who do one to two days a week of exercise are not actually any better off than the people who don't do any the Improvement starts with The Gray Line when you get to three to five days a week and it's even better for the yellow line when you get to six to seven more seems to be better we just published a paper a couple months ago comparing the Mediterranean diet to the Mind diet this is the spread in the population pretty nice even spread what we showed was the Mind diet was about twice as good as the Mediterranean diet in terms of being associated with better Parkinson's outcomes for those who need a reminder the Mind diet is basically a combination of a Mediterranean diet and a Dash Diet but instead of just saying vegetables it's specifically emphasizes green leafy vegetables instead of just fruit it emphasizes berries nuts and seeds the the thing to keep in mind about the minded diet is it does include poultry but according to our data when we analyze each of these variables by themselves poultry was still associated with faster Parkinson's progression this the Mind diet would have been better had it not included poultry so I tell people if you're looking for a cookbook go buy a mind diet cookbook but go light on the poultry I'm not going to go through all of this this paper is online freely available um but this over here is a list of the symptoms that got statistically significantly better as one's adherence to the mind and Mediterranean diet improved so what we're looking at is go over to the Mind column all of to the right of the Mind column all of those P values less than .001 were statistically significant so as people began adhering to more and more of a mind-like diet constipation improved motivation depression apathy daytime sleepiness visual disturbances insomnia muscle pain cognition sexual dysfunction in urinary symptoms all got better as people became more adherent to a mind to diet in terms of diet I think we can still do better I think there's the Mediterranean diet is good mind diet is even better and I think we can come up with an even better Parkinson's specific diet and that's what I have been working on so what I have been handing out to other people in the past are a list of foods associated with the people who are doing best on the left are the foods that the people who are doing the best are eating and on the right you'll see these are be food behaviors that they say true to I avoid soda true I regularly eat buckwheat true I avoid Dairy true right so this is what I have been doing but what and I've been trying you know all these different font size the larger the font size the more of the effect size trying to find a way to communicate to people not all good is equally good not all bad is equally bad how can I educate you all about what the data are saying and it starts to look like this right I can see that the people who are doing the best are eating those Foods on the bottom right I can see the people doing the worst or eating those Foods on the top left what is really exciting is as of this morning I got this list of foods and this is something that I've never released publicly before um but what we are doing here is on this slide I am asking what are the successful people eating on this slide we are saying when you take it into consideration the fact that people who eat beef also eat a lot of pork and people who eat a lot of fresh food also eat vegetables the lists over on the right are if we're going to use the highest standards taking into account multiple comparisons what are the foods that really seem to be responsible for the prevention of progression and the acceleration of prevention if we are going to attribute some level of causation to diet this is the closest list I've ever been able to come up with so um we can come back to that after but ultimately this is what I am trying to set up I'd actually like the next version of the app to be able to help you all get a handle of not only where you're at but where you're headed there's no reason you can't answer a couple questions about your physical activity your diet your supplements your friendships and have the calculator predict hey you keep this kind of behavior up this is what you can expect for progression over the next 10 years so we are working on ways to to statistically not just tell you that brussels sprouts are associated with better outcomes but to help you be able to see how you change your diet and we can see a Improvement in your trajectory moving forward we are working really hard on all these different ways to package and deliver lifestyle modification it is so much harder than red pill blue pill right I mean this is even harder than like a half hour on the treadmill or an hour on the treadmill right we not only do we not have Placebo diet I mean we are talking about empowerment and change in mindset and change in values and changing bedtimes and you know it is it is not just about a food or a supplement it is about an approach to your journey with Parkinson's disease and that is not an easy thing to prescribe so when I work with my patients in clinic I kind of have this idea that parkinsonism is just a boat with some cracks in the bottom and our job is to metabolically take inventory of where are the threats to your progression and seal them up we're not going to get into it today but in clinic it's not just diet yes I nag about exercising yes I tell people to change their diet and yes I tell them to go to bed early and get a good night's sleep but I also do a very comprehensive part panel of labs with each person I wear every single new patient I see I work them up for B12 deficiency lithium deficiency vitamin D deficiency inflammation and so it's not as simple as just one thing but I do want to let you know that when I nag about exercise and diet and social health and bedtimes and I do rule out B12 deficiencies we start to see some Clinic trends right and before I show you the screen I want to acknowledge that it is really bad low quality data right but I just showed you on many of the slides prior how Parkinson's progression increases over time so I have a biased sample every single one of my patients who winds up in my office has looked in their off their neurologists eyes and thought to themselves I'm going to find somebody who knows something you don't right that is a very empowered group of people that is not the average patient right whose second guesses their neurologist and says I'm gonna I'm gonna find someone who knows something else right the fact that they're paying cash for my visits probably means they are in a above average income threshold and the patients who I did see who are getting horrible results are probably not likely to come back right so there are a whole bunch of reasons that it is not high quality good data for me to say look at what I see in my practice however for a disease that most of you have been told is irreversible and Progressive this was one day of patience in my practice some of these people I've been following since 2016 even if it's a skewed sample even if I'm full of placebo even if I don't know if it's exercise or diet or what it is I I am becoming more and more convinced each month that this disease does not need to be irreversible and Progressive I have I I see it every single day I see people who are better today than they were a year or two or three ago with meds with exercise with dietary modification with supplements with correcting their underlying deficiencies and decreasing their inflammation I believe this disease does not need to progress so as I've been plugging away at Solutions it's not just about disease modification and tracking I'm also very interested in screening I'm excited about this we don't use smell tests enough I'm really excited about skin biopsies most of us have read that fox Foundation recently um has been part of a a biomarker and cerebral spinal fluid that might prove to be useful I have trained Italian truffle hunting dogs um to identify the scent of Parkinson's disease in dirty Q-tips earwax and so they I put dirty cotton swabs with earwax and skin cells and these little containers and the dogs go up and down the track it's a cheap cheap easy way dogs are in order of magnitude better than any technology humans have and they're available today it took me four days to train my Italian truffle hunting dogs to identify the scent of Parkinson's what I'm saying is we have tools we aren't using right if we all came together we could find ways right now to tell you whether or not your loved ones without Parkinson's are going to be diagnosed in the next couple years right we do have ways to slow it and we certainly have ways to track it now so for those of you would like to pitch in you liked concept you like the like the idea I believe in Big Data the more people who can participate in this study the more the results are truly reflective of the general population right now we have 90 white people eighty percent of people from North America we need more diversity we need Geographic diversity ethnic diversity racial diversity if you want these data to reflect you you need to participate and people like you need to participate so to participate in this study it's completely internet based it takes about 60 to 90 minutes twice a year and you can do it for 15 minutes save it and come back so you don't have to do it all at once thank you for the opportunity to be here and this is an email address that you can reach me at if you have any questions thank you very much Lori this is uh really a message of Hope for all of us and I think that uh when you said that actually um we are the boss I think this is an important thing we are in charge we are in the driving seat and uh we can make choices choices to exercise or not to exercise to eat different things to make an effort to boost your social lives or to stay alone um and uh and I think that you showed us what people who are successful at managing their symptoms do so you give us a few hints more than hints indication of what the best choice is it might be so thank you for that let's just look at some of the questions two questions actually that are referring to the fact that the geographical uh differences the first geographical difference she's highlighting is a Mediterranean country and she's asking whether we have noticed that people in Mediterranean countries that have a Mediterranean diet by definition uh have significantly significantly less Parkinson's than others oh we don't have Registries in any of those countries and certainly not comparing them between countries so we don't know we've never looked and so I guess that's answer to second question from Donovan was asking whether in China where people have followed Eastern medicine practices we have seen a different type of uh situation than in other countries but we probably don't know um I mean they have different data than we do for instance they have data that says um people who drink more than three cups of green tea per day while they're growing up develop Parkinson's seven years later than their counterparts and so you know obviously each culture has their we don't have enough people drinking green tea in our data set to be able to have that be statistically significant thank you so Beatrice has a few questions the first one is about chicken she was surprised to see Chicken on your on your list of uh less well less Good Foods uh why is poultry bad is it something related to um so this is the whole difference between pragmatic and explanative research right this is the difference between limes and vitamin C I don't know why chicken's bad I don't frankly care why chicken's bad all I want to know is the Once I know that the people who are doing worse are eating more chicken what I want to know is if you all stop eating chicken do you start doing better and we might someday find out why but I'm gonna skip over the wise and just go to would you be better if you started behaving like the people with your disease who aren't progressing the two other questions from from vietries are about two other uh elements uh the first one is gluten I mean I understand what you said about chicken but uh did you did you look at gluten in a different way because you didn't mention gluten at all today and I personally for instance have a gluten-free diet which is part of my my Mediterranean efforts um on this this slide you can see on the behaviors over on the right hand slide at seven o'clock position people who say true to the statement I only consume gluten-free bread and bread products are doing better than people who say false to them um on the left you'll see brown rice uh oats not many other grains none of the grains made the cut for statistical significance at all um in in all of the data wheat pasta has always either been insignificant or just barely significant in the bad list um so I have it it's either neutral or maybe a little bad but there's nothing about bread and pasta that seems to be good for you it's interesting on that that shot for a second if you don't mind because Beatrice the next question was also my question is about wine wine is on the green list which is really encouraging because I wouldn't expect anything like that to be the case uh you may not have looked at why but do you have any feeling about white wine red wine wine red is better than white yes that's the most common question I've gotten in the last 10 years of this stuff from people who had stopped drinks as soon as I say wine is good everyone's hand goes up red or white let's just move to a question from Edwards Edward is asking would it would not be more precise to assess symptoms without the modifying effect of medication um let me stop sharing here not necessarily um because at the end of the day I'm want to study the people that I'm trying to help and the people one it's unethical right like if you're just newly diagnosed in the last year or two maybe we could take you off meds for a bit but to truly get you off meds too really truly evaluate you in an off State truly we're talking about a one-month Washington yes that might be doable for someone very very very early in the disease and and I would actually argue that l-dopa is a nutritional deficiency just the way that people with insulin to dependent diabetes can't make enough insulin and they have to supply it exogenously and once they put the insulin in everything works normally people with Parkinson's can't make enough dopamine once you put the dopamine in everything works normally I would actually argue there will never be a disease modifying therapy that doesn't include making sure that your dopamine needs are met that's part of the therapeutic package I think you're answering another question actually from someone on the same topic who basically was asking does using a levodopa capital today reduce your odds of healing in the future now we're not exactly talking about healing anyway but uh is it basically is it bad for you in the long run I am talking about healing and in the long run um in fact I would argue yeah no I and and on the online Parkinson's school there's an entire class that's free it's online it's course number two and it's called It's All About dopamine management and the whole point of that course is to me trying to kind of make the people with a little bit of medication hesitancy comfortable thank you very much Sarah is asking what does stress could affect the way food is digested and impact the effect of the diet absolutely 100 yep the fight or flight or rest in digest it's one or the other the the teeter-totter of the autonomic nervous system if you are experiencing stress fight or flight you it is not possible to rest or digest so Stephen who is a an old friend of ours is asking is asking how important is the rest in PD especially for people who feel fatigue that's a good question I haven't studied it um other researchers have shown that sleep is one of the few modifiable variables that seems to bode well for progression um so I I the research on in so Parkinson's disease is very much mechanistically attributed to something called impaired autophagy y'all are doing a really bad job taking out the trash inside your cells there's a whole bunch of metabolic waste when my daughter was eight she said you mean their neurons are constipated right that's exactly what's happening you're not taking out the trash and the term for that is impaired autophagy and at night while you sleep there is a 17-fold increase in your brain's ability to take out the trash the other thing you'll should know is you can't take out the trash without my Master's in Parkinson's disease there have been researchers screaming for 30 years this new book on lithium deficiency and Parkinson's disease there have been researchers for it decades saying lithium deficiency is associated with neurodegenerative and psychiatric diseases and it's taken 40 years 50 years now I no one seems to be responding or stepping up from a public health perspective to change that this is a lot of work to be done man my neurologists who had a consultation with a few days ago mentioned exercise for me for the first time and I was obviously I'm not sure [Laughter] so someone is asking whether parkies or people with Parkinson's should eat fish every day know that you need it every day um I don't know what labs you all have available I met in Washington's omega-3 fatty acid levels in their blood and there is data that says people who are four percent DHA long-chain fish oil are half as likely to get dementia so what I do is I have my page most of my patients take supplemental fish oil and they don't need to eat fish daily um but that at the end of the day my recommendation is personalized to based on their blood levels good um someone is basically saying that you didn't really I mean you touched on the topic of supplements but you didn't delve into the detail too much and you didn't mention vitamins or coenzymes or others um is it uh did I miss something or is it something that actually deliberate no um can of worms basically but let me do that right now so the this paper is freely available we just published it two months ago this is the answer okay as far as we know it's called symptom severity and use of nutraceuticals and if you go to the figures these are the supplements that are most commonly used in Parkinson's they are not the ones that are most effective this is what is most commonly used when we look at the ones that are um I think we have 40 some different supplements on here and so what we did is for each one of these supplements we adjusted we compared each person to other people their age their gender in their income bracket diagnosed the same time as them and so the way to read these data goes like this of the 1100 people that we surveyed the 19 people who are taking Ginkgo which is not very many are on average doing 357 Pro PD points better than the people not taking Genco and the black line tells us how confident are we in these data if we were to go out in the true population we can predict that the true answer is somewhere between here and here so if we call something statistically significant we are talking about the Blue Line not only looking beneficial but the black line being to the left of middle so intranasal glutathione is good but we can't be confident that this is true across the population oral glutathione is even better and our confidence is really high and so each one this is not a shopping list some of you if you have had breast cancer or prostate cancer you could actually hurt yourself with DHEA you know in the United States this is a cheap over-the-counter supplement in Australia you have to see an endocrinologist and get a special prescription for it so each one of you are going to have to decide with your doctors with your whoever is guiding you whether or not you should consider taking some of these um but you can see down here um oh look at something lion's mane seems to be good but not terribly confident uh low-dose Naltrexone NAC a lot of people take NAC as uh in hopes to boost glutathione NAC does not seem to be working glutathione does vitamin D might be helping bones it might be helping something but it's not slowing progression is what our data says so this is just interesting it's hard to say you know anything about red light therapy we only have not 35 people using it I wouldn't throw the baby out with the bath water the stuff that's down here doesn't mean it's not working it probably means we don't have enough data or it's not working and so this is why it's so important for all of you to participate but something like probiotics hundreds of you are using probiotics they're not slowing progression if they help your constipation great use them but our data suggests they are not doing diddly squat to slow progression so when we have hundreds of people doing something I am much more comfortable interpreting it differently than if we have six people doing something so this is a supplement data and where you can find it that's amazing thank you very much I will just jump into a couple of uh specific questions on supplements as we are on that topic now uh I think Mark was asking about uh Burberry you know I don't know if it's something you have an opinion on I didn't sleep on your list no opinion on that we have two people asking about mukunda yeah so I find it super interesting that levodopa does is not associated with improved outcome over time but makuna is and there could be a couple reasons for that um people whose disease is mild enough to be managed with makuna are already doing better and you know it's there's going to be a self-selection bias there um the other thing is there was a very neat study done in Canada where they took the dopa out of makuna and people still benefited and so makuna has nadh in it and CoQ10 in it and there are a lot of things in makuna above and beyond levodopa and probably some antioxidants and anti-inflammatory things and so um but I do find it interesting that macuna did make it to the list of things supplements that were statistically significantly associated with better outcomes over time that's very nice uh there's a question from an anonymous attendee who was struggling to find the pro PD app so just to repeat it is on the iOS web store and on the Apple Store the Apple uh yeah it's yep and it's um it's called Parkinson symptom tracking perfect No it should yeah if you just type up Parkinson it should pop right out but Parkinson's symptom tracking no s as you looked that is a question as well from Anonymous attendee have you looked at the effect of chemicals such as head eyes makeup Etc uh I mean I know that some of the environmental factors play a big part in the agriculture for instance or in the industry that in the ones we're using at home in particular um we do ask people do you dye or color your hair we have not analyzed those data to see if they're associated with worse progression or not but we are collecting those data we are collecting some environmental data that again we have not analyzed yet how close do you live to the nearest highway do you have a history of exposure to pesticides herbicides things like that um so if there's a grad student on the call who's looking for a project we have a bucket ton of data so Armin is asking a couple of things he's asking whether reducing protein is good and if so by What proportion and he's got the same question about reducing sugar um so our data does not suggest sugar is really that bad for you um but patients will often report feeling better when they get the sugar out the brain fog Tremor I I hear it a lot in clinic but it doesn't match what our data says in terms of protein um you know we kind of have two groups of people in the cohort there are people who are really underestimating how much protein interferes with their men's so for those of you who don't know the receptors in your intestinal tract that allow you to absorb dietary protein are the same receptors that absorb levodopa so your first protein-containing meal of the day starts binding those receptors and that's list space for your meds to go it is so common that people will have two eggs for breakfast and a turkey sandwich for lunch and go years thinking that their meds don't work very well and then when you say approach and then there's something called a protein redistribution diet where you don't reduce the amount of protein you just change the timing you save your protein for dinner have a low protein breakfast a low protein lunch and so you kind of give your medication first dibs at The receptors all day long meds work great you run your errands you go play tennis you go to work then you come home and have your fish or salmon or eggs or whatever your protein you're going to have at night so you don't get protein deficient but but you don't have to worry about that interaction you're still probably going to be more rigid and stiff after dinner right that's we can deal with that separately so we have a whole group of people who are probably listening to this who have never been taught that something as simple as an egg can ruin their entire day in terms of Med responsiveness group of people have been taught that and they're so parent drugs and protein that they're essentially making themselves protein malnourished and that's not helping anybody's anything and so again once a year I measure all of my patients protein levels albumin globulin there are ways in your bloodstream to assess protein and we both um you want to your your protein requirements you want one milligram per kilogram body weight that's your total protein goal don't want much more than that and you don't want much less than that that's about the ballpark each of you are going for a study was just published out of Greece I believe recently that said the average person with Parkinson's and their spouse are eating 50 more protein than the average than the typical non-parkinson's household there's something about where am I going to get my protein where am I going to get my protein that you guys are chasing protein a little bit more than average so if we're going to go by that study you might want to loosen up a little bit on your protein intake and what the study said was for every additional 10 grams of protein the person consumed their dopamine requirement had to go therefore go up now to overcome the protein so many of you are caught in that cycle that is very important to know um you touched on when you showed us the chart of the supplements that were working according to the survey or not uh you I remember probiotics were not very harmed at least and someone is asking whether probabilities are good for PD and if they do interact with levodopa I mean what you showed there was quite an insignificant rank yeah yeah um I I mean there is no question that the microbiome in Parkinson's disease is abnormal right we we know that and we we have another paper under review right now that we looked at 50 consecutive patients with Parkinson's disease and I think on average each person had about 5.7 million unique organisms not just bacteria but fungus and and um what do you call the viruses that live inside the bacteria I mean you know there there's a whole world in there and so it is such a joke to think that you're going to put like four or five strains of bacteria in a capsule and shift five to seven million organisms milieu if you want to change your microbiome change your diet like there's no prob fecal transplants might be a shortcut but if you go back to cheeseburgers and milkshakes what grows in your gut is a reflection of what you're feeding your gut the organisms that are in there that's any important message Tony is basically saying he's looking at the green list of food and he's worried he wouldn't really feel full on that diet um and he's asking whether uh there's a way to sort of like make you give you the cheating of being full while at the same time focusing on the green list they're not going going on the red list yeah so um feeling full comes from really two different strategies getting enough food to stretch your stretch receptors gives you a sense of fullness and getting enough fat in your bloodstream to chemically send a signal to your brain that says I'm sated right so the short answer is just increasing the amount of fat in your diet coconut oil was on that list olive oil is on the list right so so satiety can come by increasing fat content and I do think it's important to there's no question that how can I say animal products take six to eight times longer to move through your intestinal tract than plant Foods right and that does require a little bit of reset right it is harder you're eating more more often if it's going through you that much quicker but let me tell you I spend my entire life listening to people complain that things aren't going through you quick enough right like you have to so many people equate full from this lump of stuff sitting in my gut for six hours means I'm I'm like I'm not hungry because it's just sitting there being undigested that's exactly what we're trying to fix I want you to be hungry I want you and and so quantity matters um smoothies I can't eat as many fruits and vegetables as you need to get the points that I want you to get my morning breakfast you know I'll put a little macadamia nut milk in the bottom of a blender with a handful of spinach a banana or two some fresh blueberries raspberries strawberries Frozen black cherries a little peanut butter scoop of chocolate powder I mean that's a 25 you know that points points points I get half of my fresh fruits and vegetables as a smoothie for breakfast in the morning so cheat find ways to make it easy to get lots and lots of food in an easy to digest way exactly smoothie is the best time of the morning um someone is asking about their reproduct and saying should we avoid all of them cheese milk yogurt I mean I will add to that question with uh some some comments I had heard in the past that some type of cheese like parmesan or hot cheese would be different from some others is it all dairy products I I have friends that tell me menthol cigarettes are different than non-menthal because the studies have never been done on Menthol um I've been paged with people said what about camel milk um so the answer is if you want to look for a loophole you know you're welcome to jump around um this is the page that I told you I am most excited about this is the brand new hot off the press data set this is the closest I have ever gotten to blaming if there are is a short list of foods before what I showed you were the things that successful people eat this is a list of scientifically speaking where are the fish really biting by way of shaping progression and you're right the list of bad foods is way longer than the list of good you can't just eat the good I expect you to eat some things that aren't on the list that's where we can go over to the brown rice and the tap and the eggs and the wine it does not look like wine is slowing Parkinson's progression but successful people do drink wine so so if there is really a short and sweet version of the list a take home that you're going to those of you who are open to some dietary modification this is where I would put my energy the most important good foods to eat are those ones that are on the bottom if you're going to emphasize more of anything that's what you load up on if you are going to start avoiding foods that look like they are probably hurting this is the important list to start avoiding and for the person who asked about Dairy every study except one out of Japan but every study for the last 30 years that has asked is there something in our environment that might be causing Parkinson's has said pesticides and dairy products that is not disagreed on we are we're arguing about why some people think that think it's the pesticides in the dairy some people think that Dairy changes the microbiome some people think it depletes uric acid some people so we don't know why but we all agree the more Dairy your children are consuming right now the more likely they are to be diagnosed with Parkinson's why we don't have prevention efforts underway why have we not told the Next Generation to stop consuming Dairy I don't know um thank you dorians thank you very much um just a comment to the audience we have answered uh stately more than 20 questions and I see we have another 24 questions open um I think we'd be lucky if we managed to do all uh so I would just basically suggest to everyone at this stage that please maybe refrain from adding more questions knowing that um I might not be able I will probably not be able to to go through them with Lauren and Lori thank you for your family version of your time but we we have to to cap it at some point Rosemary Rosemary is telling us that he's been fighting being overweight all her life and she has avoided high calorie foods alcohol and fats and she's basically asking whether the nine diet can be balanced with the risk of gaining more weight of basically destroying her her plans or managing her weight no first of all um it's possible to eat a mind diet that doesn't include alcohol nobody's going to force you to start drinking you can still get a lot of mined points and leave off the alcohol um and not all fat is bad fat right um remember 80 of your brain is is fat I mean the reason fat is so important is that's what our brain is made out of and so try not to think of fat as good or bad but something the body needs and it is your job to feed your body good fats the long chain fatty omega-3 fatty acids plant polyunsaturated fatty acids and try and avoid fried fats animal fats saturated fats that come from animal products so it's fat isn't bad it's the type of fat nobody ever got became overweight eating too much olive oil that's right that's a good memory to keep Annie is asking whether you have any changes to your opinion on vitamins B1 so I don't know what your opinion is a vitamin B1 I know some people take high doses of vitamin D1 what is your opinion please um so I am when when even before the Italian paper was I was always fascinated by the overlap between between some thiamine deficiency symptoms and Parkinson's so um I do think it is biologically plausible that a subset of people might benefit when people in my clinic have asked for it I have helped to them and I have personally never been impressed with anything I have seen personally in the study 55 people said they were using high-dose thiamin interestingly enough I think it missed statistical significance by one point I mean this really does look like it's doing something I get that it didn't officially make the cut but these results made me have more enthusiasm for high-dose thiamin than I had before these data um it does look like the people who are using it even though they're only 55 in the study seem to be doing better than average so that's encouraging and actually uh to anyone who wants to know more about vitamins B1 if you visit or YouTube channel you will see an interview of Daphne Ryan who has written a book on the topic so there is a lot of information there Gina is asking whether you work with anyone who has had DBS and does it make any difference to the way you approach the patient no not at all I I refer people to for DBS regularly I think it's a fabulous viable excellent option for a lot of people thank you very much Stephen was uh quite uh interested in your comment about El dopa helping with pain relief and anxiety and he's asking whether creatine would be useful in muscle pain I have not seen it be useful in muscle pain if you had that experience I would love to know that and that's the other thing I'll say is for those of you who are in the MVP study it's a it's a marathon I get that we ask for you to answer a lot of questions but down at the end we have a section that says is there anything else you want us to know and that's where people will write things like creatine improved my pain or my sleep or lion's mane improve my sense of smell and we actually read every one of those and we change the survey so that we can start asking other people are they noticing that stuff too so once one or two once we have a couple people telling us craniosacral made my drooling go away right that's interesting and then we so so please know we're working for you this is your survey if you have questions like that let us know it's really easy for us to go out and start asking them high dose thiamin was not on the survey when it started thank you very much Irene Beatrice has an interesting question about asking whether there is any difference between men and women especially women who face menopause with its own challenges um there is a difference I don't know I'm not going to speak to menopause particularly but women have a slower progression than men that's good very happy for them and on the topic we basically we will have a session on on Parkinson's and women towards the end of the year I think it's in October as I remember what Andrew is asking whether having seen that mukuna can be beneficial on the supplement list should we reduce or level up a pharmaceutical level to take advantage of the mucuna instead I know that I would reduce it no but um many of you will have an opportunity in the in the future where you you are taking your meds every four hours but they're running out after three and a half and a lot of people will kind of top it off they'll take a 25 100 livadopa with a makuna and tell me hey instead of my meds wearing off at the three and a half hour mark they're lasting an extra hour now and so I would say just be patient if you look at there are other things that also seem to be good for you besides makuna like exercise and friendship and Brussels sprouts like you don't need more pills are not necessarily the solution I would say the next time you find yourself running a little short on meds and considering a dose adjustment up that that might be a good time too instead of just piling on more Pharmaceuticals mix and match and see if you don't get some benefit by adding some mikuno excellent that's what I do by the way um someone with initials HR is asking uh having a look at ginkgo biloba as being the top of the list uh okay small population of respondents but very big impact right is the is is there anyone who should not be taking it um people with bleeding disorders there seems to be some research that it might people who are on blood thinners Warfarin Coumadin it might increase your risk of bleeds um the you know we we have been using Ginkgo for thousands of years as a memory enhancement drug there has never once if you go to the PubMed the medical database and type in Ginkgo Parkinson's a hundred and some studies pop up showing how good the molecules in Ginkgo are for neurons in Petri dishes test tubes and rodents there has never once been a study where we have given Ginkgo to people with Parkinson's right so one of the reasons I'm doing this study too is is to help other researchers get some ideas about where the fish might be fighting um and so what I I as an complementary and alternative medicine talk for 20 years I've never given Ginkgo I felt like such a fool when I got these results back in the the first the number one thing on the list is something I haven't been using with my patients um and so lately what I've been telling people if you don't have a bleeding disorder it's one extra pill I found a product that only costs about 17 a month it's one pill a day and it's about the dose that they've been using in the Alzheimer's trials and so I have been making it more available to people but I'm certainly not pushing it or recommending it thank you very much I have a question here that makes me smile if not love or Melanie let's just take it with tongue in cheek how do we get the dogs to help us are your dogs available maybe around Seattle we can go for a walk with your dogs yeah yeah yeah no you if you you every drawer in my house has some dirty Q-tip that somebody from somewhere in the world sent me saying does this have the scent of Parkinson's um yeah stay tuned I mean this is just a time and resources thing I've applied for two grants saying can I turn the dogs into a medical detection device and both grants have given me a very good score and said yeah come back why don't you have more neurologists on board It's like because they're dogs dogs are my partner I don't need no you know so I'm fixing the the reviewer feedback but yeah I mean um Within if we have the money to build the lab we could have the dogs up and running in six months I mean everyone could send in dirty Q-tips and we could tell you in 10 minutes whether the dog responds yes or no if we have time I can show you a three minute video on the dogs it's pretty good let's keep that for the end I also wanted to say that I read reverted recently that the company has launched a skin test called scene one that basically has a 95 success rate so the dogs are great but it's good to know that there are other Technologies available as well that are emerging right now um the dogs are in order of magnitude and they're much nicer so someone is asking if we could order there we do we risk an increasing the risk of osteoporosis as a you know as basically that is already a high risk for people with Parkinson's in general yeah um interestingly one of the ways I wound up studying what I'm studying is my undergraduate work was in nutrition and and I chose as my graduate thesis project bones and calcium and I thought it would be easy and it was my first wake-up call where I learned the more Dairy any country consumes the higher rates of osteoporosis in that country right and so it is true that Dairy has a lot of calcium but it also has a lot of sulfur containing amino acids that make you P urinate out your calcium so I don't want anyone becoming calcium deficient almonds seaweed green leafy vegetables tofus all packed in calcium carbonate if you need a calcium supplement if you're low you can take one um but I would argue there is no evidence that a person with weak bones can chug Dairy and make strong bones that's not how that works great thank you very much Stephen is asking actually something which is not so much diet related but more uh he's asking what it is helpful to give people a diagnosis of PV given the risk that you have of programming the people for knowing that it is irreversible so they will basically be making it unconsciously irreversible who says it's your who says it's irreversible oh that's exactly his point so he basically says is it helpful to give someone a diagnosis of irreversible disease well actually it may not be necessarily always impossible to slow down I I mean I think I understand the question and and I absolutely believe that Physicians telling patients this is irreversible and Progressive is hurting them just like there is a placebo response there is a nocebo response if your coach believes there is no way in the world you stand a chance of making the playoffs there's no way you're going to make the playoffs like I would argue at you need your provider to actually believe that this is a modifiable disease and whether that is Placebo or brainwashing or manipu you know like I don't again it's I don't care how we get there all I care about is that you're better next year than you are today that's exactly that one step at a time Andrew is basically telling us that he has changed his diet to an organic plant-based diet and since then his dystonia has stopped within two weeks and that was early in November 2019. so he's asking whether he is an outlier or have her or or have you seen other examples of the same phenomenon yeah well it I have more fun going to work than anybody I know it is fun to hear people talk about their successes all day it try it track your score type in the Pro PD about to change my diet do it for a month take your score again and see how you decide for yourself do you feel better or not most people say I'm gonna keep going because I feel so much better so two people are referring to a Helsinki study that I was not aware of with a very difficult word to pronounce where basically that study found that people that there was basically desulf of desulf of vibrio bacteria may be responsible for PD are you familiar with this yeah there's a study that just came out linking that one bacteria to Parkinson's but like I said I I again no Silver Bullet I do not think that of the 5.7 million organisms in the gut that one is the problem right we like I said we have a paper under review people with Parkinson's are missing viruses in healthy controls have like two times three times more viruses in their gut than you guys have it's not just bacteria it's fungus it's viral it's it's inflammatory um so while it would be really awesome if this were just one bug causing all that that's not where I'm putting my chips excellent great question from Shelley actually the question that was burning my lips what is your experience of fasting because you haven't mentioned fasting and we had uh Philip Matthew sorry Matthew Phillips a few weeks ago talking to us about fasting and keto diets um I am a huge fan of intermittent fasting I ask all my patients to stop eating three hours before bed and to do at least a 12 hour fast every night so if they go to bed at 10 pm stop eating at seven seven PM to 7 A.M no food if you can go even a couple hours longer into the morning awesome um I have not found keto diets to be very sustainable um people I I already work so hard to prevent people from losing weight and most people will start losing weight on a keto diet in my experience is the stress and the weight loss are are not worth any are not with any benefits I see so I love the science that we're learning from you know whether or not Ketone Esters might be a tool or whether we can kind of go keto-ish and get some benefits um I think we might find that but I think the science is solid that the body needs a break from food to start encoding DNA different I think it's beneficial for other purposes than just Parkinson's for cancer prevention and other illnesses um Bernard is asking whether is it possible to have a list of good and bad foods you know you have already mentioned it in your slides is there another more comprehensive list somewhere or should we just refer a burner to those lines of the presentation afterwards um yes and and there is another list from last year that has a kind of an expanded list of good and bad that I'd be happy to send along that you could post thank you very much um so just looking at some of the question actually uh yes uh someone Anonymous would ask me about fasting we answered that and also asking about high carb diets I don't know we heard you on that one um hi hi what diet yeah um I yeah I don't I don't know other than sugar I mean it's here's what I'll say about sugar when I do my annual blood work on my patients with Parkinson's I measure everybody's hemoglobin A1c and I measure everybody's level of inflammation as a high sensitivity C reactive protein and if people have high blood sugar stop everything I slap a continuous glucose monitor on them we get their sugar under control as a priority item once sugar comes under control you can watch inflammation come down right so there are people for whom I make sugar a really big deal but I'm going to say 85 of my patients with Parkinson's sugar is not one of the things we worry about it Jim C was asking about Roti gottin which is a new one from the other family with this I haven't seen it is the top of your list of questions oh uh tickety and patch um for dementia is I assume um yeah so I think it has potential so so for those who don't know the reticotine patch has been used in in Alzheimer's disease to improve cognition um and and when we started using them Parkinson's I don't think anyone was that excited about it because it hasn't been terribly mind-blowingly effective in Alzheimer's um but I actually find it pretty effective in Parkinson's I I absolutely think if your doctor is suggesting it it's worth trying it um I do hear a lot of patients and their Partners saying that when they started using it it did seem to improve cognitive function so I definitely think it's worth a try I want to keep it down thank you very much seems to be confused about the fact that actually coconut oil was on your list of vitamins and supplements that you were not too confident with but at the same time it was on your positive list of foods um what is your view on coconut oil is it clearly green no it is purely green it it made both cuts it was statistically significant as a supplement and it is on the short list of foods that seems to be having a beneficial impact thank you very much Donna has a question that is basically goes well together with another question much lower down on the list from someone else have you studied the people who claim to have overcome Parkinson's like a guy he could or would chuck that I don't know uh have you looked at specific cases of people who who basically managed to reduce their symptoms or slow down to such a point that it basically feels like they have it totally under control yeah did you teach you anything you understand the statistical numbers of the bigger population that you've looked at um I have asked all of those people who I I get emails from people often telling me their stories and I send everyone to the data to join this study because what happens is if I hear that Howard reversed Parkinson's what happens is even if I were to write it up every neurologist rolls their eyes and says it's just anecdote we don't know that that was even Parkinson's we didn't until they do an autopsy we don't really know that that's what he has I mean there's always a we don't know um when you start getting into populations that's where it starts to I mean I am taking what those people tell me is their secret to success and I'm studying the population to see if those if you the rest of you do it does it also work for you too so I'm learning from them to build this questionnaire and you want them to be on your on your chart as a little dot on the lower right quadrants together with others as many as possible uh and that basically leads me to another question that is quite similar which basically Donna was asking me if you had included Jimmy Choo in your database you know him of course he was in one of the pictures I know him I have personally never looked to see if he was in the database and even if I have you couldn't tell us I wouldn't tell you so Donna is asking us where to get mukuna well aberman online I don't know there is no real mystery uh I'm not in the the work of trying to advertise any products and don't benefit from any rebate of any kind but one of the ones that I will probably suggest is a company called now and ow simply because they've been at year approved and there's a lot of products coming from more exotic countries where I wouldn't be so confident the one that is improved in India has actually has artificial sweetener in it so the now brand um they did a study where they looked at six different companies taken off of store shelves and then now brand was the only brand that had in it with the label set it had in it good that's good to know um some questions actually get a bit more remote like is there a link with tinnitus and Parkinson's I think youngster is yes but I don't know if that was one of our symptoms at some point too so I'm quite familiar with it this is for those who don't know it is hearing a noise in your head um the link that I am aware of are are B12 deficiency causes both parkinsonism and tinnitus and magnesium deficiency has been linked to both neurodegeneration and tinnitus so if a Parkinson's patient presented with tinnitus I would absolutely treat or work them up for magnesium and b12 deficiencies thank you very much uh Shelly was asking us where the vegetable proteins are as bad as animal proteins I mean you were sending us earlier that they were not necessarily bad it's a question of when you take them and how much you take but would you make a difference between both well you can remember remember animal products take six to eight times longer to pass through so if you put a little bit of peanut butter in your morning smoothie it's plant-based you've blended it up it moves through you quickly it's still your peanut butter in your smoothie is not still going to be interfering with your meds in a couple hours that you take two hours from now so people will find that even though hummus has protein in it they can dip their cucumbers in hummus and not have it interfere with their meds much and so um you can play around with what you can get away with what I have people do is just to find answer the question is protein interfering first thing you do is take a couple days off of protein and just eat super super super low protein for two days and by about day two or three you know people's golf game starts getting better they're standing taller their meds are working better then you start having a protein meal with dinner and then you start sneaking a little bit in throughout the day what about lunch what and and then it becomes a game of what can I get away with what foods interfere what don't um but if it doesn't bother you don't tiptoe around protein some people can can have a big bowl of scrambled eggs and not have it affect their meds at all other people have an egg and it messes their meds up for the rest of the day so experiment thank you very very much I think we have our questions under control which is amazing because we have answered more than 50 questions so Lori thank you so much there is the last question actually from Melanie who made me laugh earlier with another question is basically said please leave us enough time for the dog video should we watch it yes hello okay how to kill all mosquitoes in the area in 90 seconds this simple I passed the commercial oh but brilliant trick you can do to welcome to the park nine testing facility we've spent the past few months training dogs to identify the scent of Parkinson's disease the purpose of this video is to demonstrate how we have the track set up and to show the viewer how the dogs signal a positive sample when they find it I circled the container with the true scent of Parkinson's disease which I'll show briefly before bringing the dogs out for each of the rounds in these first couple examples all the containers are empty except for a single container that has cotton tipped swabs from the ears that individuals with an organ sets this is our six month old Lakota Roman YOLO Reese Here Comes our two-year-old the gota romignolo Coco she feels miserably at walking the track but has no problem identifying the whole sample wow in this second video I'm blinded to the contents of the containers this round is more difficult for the dogs because there are no multiple samples from Parkinson's patients hidden among samples from healthy controls there's a lot we don't know we don't know what it is the dogs are smelling we don't know if they can distinguish between idiopathic Parkinson's disease and other forms of parkinsonism and most importantly we don't know how early in the disease the dogs can detect the scent currently Parkinson's disease is diagnosed by neurologists 10 20 years after the disease has already started a tool that would enable early detection could revolutionize Parkinson's disease diagnosis in management our goal is to convert these dogs into the next generation of medical detection devices that was amazing Lori thank you so much thank you for ending up on the high notes which basically shows us that the man's best friend is really the man's best friend so thank you so much for today I think that actually you really had a clear message of Hope and encouragement that we are the boss we can make decisions about the way we exercise or we don't exercise but we eat the red or the green list um the way we socialize and and many other things so we are very much more in control than we are sometimes told when we are diagnosed so thank you so much for that and thank you for your family thank you for the invitation to our audience I would like to say that please make a note in your diary that our next session is provisionally due to take place on Monday the 5th of June and we will have the pleasure of hosting a presentation by Dr Peter Tas from Stanford medicine on the use of vibrating gloves so I do expect a lot of leuku Journalism that day thank you Lori thank you to audience and good night everyone thank you

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Views: 92,053

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Id: LdpfNnnAzKI

Length: 89min 38sec (5378 seconds)

Published: Wed May 17 2023