I have nothing against naturopaths. Bastyr graduates some very competent naturopathic doctors who in recent years tend to lean towards alopathic medicine (drug and science based) rather than their traditional naturopathic focus which was using the natural (herbs, etc.) approach.
She has focused most of her work on her attempts to use patient’s subjective assessments of what works in PD (Pro-PD) and MS in patients over significantly long time frames. She is also examining the “Swank” diet protocol which goes way, way back into the 1940s for MS. Old, old stuff to say the least.
She has also followed up on the value of lithium, which has been fairly well documented with in vivo and in vitro studies on lithium and its potential benefits for PD movement disorders as well as the original 1974 study, plus several studies since 2014-2015, etc. etc.
My only concern here is some individuals on this forum apparently feel she has all the answers as do some forum participants feel Youboob chiropractors have all the answers. Really? Think about it.
No one in the PD field has the answer... no one on this forum, no one out in clinical practice, no one doing research and clinical trials, and certainly no Youboob video presenter selling his practice. If they did, we would know about it and they would and could replicate it more than once.
My final thought about this type of practioner is very simple: publish your stuff. Publish even in the CAM healthcare intervention journals or with Bastyr.
If you can’t publish your thesis publicly, and aren’t willing to deal with criticism, then it is purely theoretical.
And PD is full of theories as most of us know.
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sharoncrayn
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I'm not sure what a Youboob is byt you make some very good points. I always figure if it's real and it's efficacious it'll be shouted from the rooftops and I won't have to go searching for it on YouTube.
I have written a couple of posts recently regarding Dr. Mischley, after attending her summer school. I personally don't happen to believe she has all the answers, as neither she nor anyone else has found a cure for PD or a way to reliably or stop progression in all patients. I'm quite sure she doesn't think she has all the answers either. I think we all know this disease is too complex and varied in its individual expression to be at that point yet. Hopefully someday that will happen.
I do think she is a serious practitioner and researcher who deeply cares about her patients and approaches both clinical care and research with ethics and passion. She has had very good results with many patients who follow her recommendations. I met quite a few of them. She also inspires a sense of hope and agency in those of us who are lucky to have her as one of our resource people. And her passion is to be able to contribute something significant to improve the outlook and quality of life for those of us who are currently dealing with this disease, rather than focus on possible future treatments or cures, most of which don't end up going much of anywhere as we know, and even if they did, wouldn't be likely to happen fast enough to benefit current patients. She is also one of the few medical practitioners who focuses solely on PD, which gives her a breadth of experience with patients that most do not have.
That has been my motivation in sharing my experience at the school. I personally haven't seen posts that led me to believe that the poster felt Laurie has "all the answers".
Regarding this: "She has focused most of her work on her attempts to use patient’s subjective assessments of what works in PD (Pro-PD) and MS in patients over significantly long time frames." This is not quite correct. The Pro-PD assessment scale is described on her website: "The PRO-PD is a patient-centered, continuous measure of disease severity that is stratifiable by symptom and correlates with quality of life and existing scales for PD severity. The PRO-PD was created because other scales do not permit this type of analysis." The scale is based on self assessment (subjective) of SYMPTOMS in much greater detail than the traditional measures of disease severity like the UPDRS. It is not a "subjective assessment of what works", but of symptom severity only. anyone who is curious about how it works, you're welcome to try it out on the website. I think it's a useful tool. educationismedicine.com/pro-pd. It's useful because it's easier over time to see if the interventions that one is using are impacting symptoms in a positive way, by seeing a lower or stable score.
She addressed the aspect of subjectivity in the assessment -- in testing out this instrument, she had patients assess themselves several times with some time in between, I don't remember the details, and she found that the patient assessments were very consistent over time. Each symptom is rated by a sliding bar rather than a 1 to 10 type scale, allowing for more precision (I believe the bar will show scaling from 1 to 100 on the back end). The intention though isn't scientific precision, which isn't possible anyway in measuring symptom severity or disease progression, but rather a patient centered tool to allow us to see if what we're doing to help ourselves is working.
Regarding publishing -- I know she published a paper fairly recently on the CAM Care study, on how lifestyle factors influence progression. Ah, here's a link:
I believe she's published before, I know she wrote a book sometime back. I don't get the impression that she's shy of criticism.
I think most of us on this forum are quite clear that no one has all the answers. I appreciate, Sharon, your intent to help us not go off on wild goose chases. In this case, you might see things differently if you familiarized yourself more with Laurie's work.
Yeah, you’d think someone with a PhD in Bio-Chemistry would spell a fellow researcher’s name correctly, huh? Or maybe there was sarcasm involved which I missed. But then I’m just a simple PD patient, what do I know. 😁
"Ph.D." means a research degree, to get it you have to advance (by peer reviewed publication mind you, i.e., it is out in the open and meets experimental design, actual scientific statistical tests, and be successfully defended against all attack of one's research committee composed of actual established published researchers themselves throwing everything they can think of to defeat your defence), as I mentioned, advance the professional knowledge in your field with your research dissertation...or else they don't give it to you.
We are not here to criticise other PwP or other researchers. Most of us simply draw attention to published research that we think may be relevant to helping manage our disease. I have not seen regular contributors here claiming to have found a cure for PD. If they did they would soon be discredited. More commonly they might say: this looks interesting, but I'm not an expert, take a look, or maybe there's some other data that backs it up or counters it. Our attitude to Dr Mischley's work is no different. But her approach is different and maybe more pragmatic for PwP than investigations into details of PD that only specialists can follow. That's why I'm a fan, since it opens up a practical approach that each of us can follow if we wish to. It's not a recipe for a cure, but it makes sense to some of us who have looked into it in some detail.
Concerning PhD diplomas. They are awarded to people who have successfully carried out a research project at a University or similar establishment. Some research theses are excellent, some are not. I have sat on many PhD jury boards. If you finish the programme and write it, the diploma is rarely refused. The diploma doesn't define a good researcher. What does define a good researcher is the quality of the peer-reviewed publications that follow after the diploma has been awarded. MarionP and Sharoncrayn are pseudonyms. We don't know your real names so we can't know who you are or what you have done. I don't particularly want to know, but I will always defend a researcher who publishes their work in their own name and by doing so accepts criticism from their peers, against criticism by someone who hides behind a pseudonym. Many of those who follow my interventions here know who I am.
I say you are a bully. Your message is: if you don't say what I like, shut up. That's who you are. If you know your message is unfair because it is to silence and censor others and you know it is wrong, then you get more bullies to make a gang. Your type is all too common, sadly.
In general, yes of course. But bully is as bully does. Why can we not tolerate just opinion without banishing? And if one person can wisecrack at someone's expense, why then not see that person for doing so in the first place? Like the spelling wisecrack, saying a PH.D. should be able to spellcheck before being taken seriously. All you have to convey your meaning is your words, there is no face, no tone, no verbal anything. Going by the type, that's a slight. On Sharon. But to you, thats ok? Only certain people can do a little sarcasm?
YOU are now aggressing. Can't see yourself? Can't stop yourself? Just more name calling. Instead of telling others what they need, what do YOU need? I'll do what you do. You first, if you think you are right, model it.
Meanwhile...the behavior you exhibit is shameful. "You ARE." "You are." Attack ye no more...and don't tread on me. Show me by showing me. Otherwise, your words are empty since they don't apply to you. Meanwhile, I'm innocent, the most I have done is the same sarcasm someone started prior to me...except I targeted no one. Perhaps you just don't like evidence and think that facts are malleable.
First look up the word criticism. Then show me where it says critical thinking is forbidden. Then show me where any researcher does not expect, and welcome, criticism. They could not succeed without it, and that is what "research" is...ask any researcher, not your own emotional filter and whether something you read passes your "is this person one of us, or one of them" mentality. And you do not speak for others...unless you are part of a gang that suppresses others...doing so reflects more from the schoolyard it seems to me, not the grownup theatre.
Yeh, it's really most important that the guy who fixes the brakes on your car is polite and knows his place, if he doesn't, go get Gomer down the lane to do them for three-fourths off, at least he's agreeable.
No excuses necessary. I just disagree with you and find your replies quite negative and condescending of other members view points, including your name calling which I find highly offensive.
Your reply says it all Marion. I inquired if you are a pwp as most members here are quite respectful and considerate of others, I just haven't got that feeling from you and I don't think I'm alone.
Four years of use of b1 , 7/8 years from the first symptoms of persistent tremor, and I still work full time 8/9 hours in a flower shop, waiting for a real cure that probably I will not use in this life.
I say this just to align myself with the sadness of neurodegenerative diseases.
I have a lot of respect for doctors like Dr. Mischley who with their work try to give concrete answers to PwPs that are not a simple analysis of data evaluated out of context of the real situations as I see written here in this post.
To understand this disease it takes a lot of FAMILIARITY with it, and this involves working shoulder to shoulder with patients also having the responsibility to help them concretely as in the case of Dr. Mischley.
Those who do not have this condition and requirement should be more prudent in criticizing her work.
P.S. I score today 220 points on her test, but I score zero points on the questions dementia, anxiety, depression, memory; I am a mostly cheerful guy in situations without stress.
I think of people living with PD and everything that comes with it and I am glad to see people like Dr. Mischley who are dedicating their time and energy to trying to improve the quality of life of PWPs and covering a lot of ground in doing so because many of her patients who have benefited from using her advice are proactive in nature when it comes to PD and consequently come on forums like these and share the information that Dr. Mischley is disseminating, only now to an even larger audience!
Is Dr. Mischley always right, probably not because nobody is always right, but she appears to be putting in a very good effort to help the cause of trying to find the best ways to deal with all the problems presented by PD and improving the quality of life of her patients likely beyond what standard treatment alone can do. That is positive action to my eyes and it is good to see in today's medical world.
I like that she is making such a good effort to put herself in a position to be part of working toward viable options to the myriad of problems that PWPs face on a daily basis, while incorporating the use of traditional medicine and complimentary and alternative treatments. I feel that she is opening up many more options for PWPs with her approach and outside of the box thinking.!
I think Dr. Mischley also does some things that some doctors don't seem to have the ability to do or don't have the time to do with as many patients as they have to see in a day. As people have reported on this forum and other forums and websites, they come away from their meetings with a new sense of hope, information that they feel is practical for them to use, a way to implement this new information and a feeling that this doctor is in tune with their situation, their needs and truly cares about their future by continually expanding her knowledge base and sharing that information as it proves its effectiveness. The improved health is just assumed, but these are needs that are very important to the patient, but sometimes are just not met for one reason or another. Leaving a doctor visit feeling good about the doctor and the visit are an important part of the doctor patient relationship that sometimes seems to get lost in the shuffle!
Dr. Laurie definitely does not have all the answers and knows that but she is looking. She is my primary doc and when I had complete med failure last year and became non functional she was able to pull out the option to get FUS surgery in Switzerland that even my MDS did not know about. The surgery saved my life and got me back to working and living. She truly cares about her patients and keeps up on all the latest advances plus does her our research. We truly need folks from every medical community to solve PD!
I agree, when I was diagnosed with PD in Feb 2018 my impression of my visit and my prospects was sufficiently negative that I started to plan an exit strategy for myself and my dog. Since then I discovered this forum and Dr. Mischley's video presentations. She is the only person that I know of who is attempting to provide PWP with real life information on diet. I have seen three dietitians in the past 18 months and neither they nor any of the medical professionals were able to give any guidance on this topic. I do realize that Dr. Mischley's database may be subjective, but I am interested in knowing what people who seem to be doing well after 10 years are doing to achieve that state. I am also very grateful to those on this forum, like Royprop and Art, who are willing to share their experience with supplements like B1 and provide links to articles that may be helpful, because I also recognize that this takes takes time and effort to contribute these posts. Also I should mention Rebtar who took the time to share her experience with Dr. Mischley's summer camp. First hand accounts like these are interesting and useful especially to those, like me, who cannot afford to attend.
I also believe that PWP who are dealing with this snowflake disease realize that we are not going to find a 'one size fits all' solution.
So those who try to help others on this forum have my gratitude and perhaps we should all remember that if you cannot say something nice, then perhaps it is better to think twice before saying anything at all.
And, some individuals on this forum apparently feel a PhD affords them the latitude to pontificate to others about whom and what they should believe in their ongoing pursuit of answers(?).
My take on Dr Mischley. She hasn't published many papers, but what she has published is good and represents a massive amount of work. Her cross-sectional survey on diet supplements and PD progression was a very unique and risky endeavour. I would not have expected that using PD progression data from a cross-section of people in different stages of PD on the basis of their self-assessed dietary evaluation at a single point in time would have given statistically significant results. Traditional surveys are longitudinal, which means following the same individual people for 10-20 years before publishing. I don't even know if there is such a survey going on. Her results showed excellent statistical significance for just a few dietary and supplement components, but these are tremendously important and provide proof of what PwP should and shouldn't eat. This is witness to the excellent design of the survey and the tools used to create the data. By doing this cross-sectional study, Dr Mischley has helped PwP who wish to take control of their health gain 10-20 years of insight. Dr Mischely knows that these results are not perfect. For a whole lot of dietary elements the published statistics are very poor. She only comments on those for which the statistics are good. She leaves it to the reader to decide how to make use of these results. I have made my decision.
This report is based on a cross sectional analysis of base line data, however, the study is longitudinal and is ongoing with, I believe, more than 2000 participants at this time.
That's good to hear rebtar. We need many more longitudinal studies like this, perhaps focused on specific subgroups such as those who naturally eat healthy food and those who don't so as to get a more refined result. For example it would be good to know how the bioavailability of active agents in food is changed by cooking. Are some vegetables better cooked and others better raw? I know cooking can destroy vitamins, but it also makes food more digestible. There is a pay off, but information is scarce.
Sharon, Dr. Mischley is the real deal. Her research is coming from a totally different perspective. I appreciate her innovative ideas and her practical suggestions based on research. I wish there were more doctors that were as dedicated to and as focused on Parkinsons patients as Dr. Mischley.
*Thanks rebtar for your first hand experiences with her.
Continued: I get the idea that no one has all the answers & many ppl refer to Mischley as the ultimate authority on PD. This generates your subtle warnings. As for me, I’ve discovered Dr Mischley (ND, MPH, RD) to be a truly authentic expert in her field, realistic and ... pleasant (bonus)! Her practice is exceptionally well organized for Skype consulting.
Since Dr. Mischley is the subject of this thread, it seems prudent to know what her credentials/qualifications are and what it takes to get those credentials. You can be the judge of whether she is qualified or not.
Dr. Mischley holds three degrees according to this page :
1. ND / Naturopathic Doctor - Average Length of Study
Training at naturopathic schools involves four years of graduate-level study and requires that students hold at least a four-year bachelor’s degree to apply. When you complete your naturopathy training, you will earn a Doctor of Naturopathic Medicine degree (ND) and will be eligible for state licensure.
2. MPH / Master of Public Health - A 43-credit-hour MPH degree program that includes 15 courses that each takes 8 weeks will take approximately two and a half years. Part-time students may take up to four to five years to finish their degree. Accelerated programs may be completed in 14 to 16 months.
3. PhD - How many years does it take to get a PhD?
Most students average four to seven years to complete a Ph.D. program. Adding the four to five years of undergraduate study to earn a bachelor's, and another two to three years for a master's, students spend an average 10 to 15 years after first entering college.
Please excuse me for being a bit polemical here. I'm just not sure where this is coming from, that Sharon, MarionP and AmyLindy think some of us see Dr Laurie as a "god", the "ultimate authority on PD", or such. Who exactly thinks this? Most of us on this forum do quite a bit of reading, take what we can from many sources and are pretty analytical and with a good measure of skepticism. At the same time, I see no problem in appreciating and celebrating excellent resources when we find them. I noticed that at the Summer School, many of the participants were better educated on PD than some doctors I've spoken to. Smart, proactive people with PD who are working really hard at staying as well as possible for as long as possible. My kind of people. Again, I was really happy to have the opportunity to be there, and glad to share the experience here.
One more thing. I just read back through this thread and saw some posts that I hadn't seen earlier. PLEASE, everyone, let's be respectful, and disagree respectfully. It's not necessary to call out a mis-spelling, right? Is that helpful to anyone? Name calling isn't helpful, right? Why are we here if it's not to help each other? How about we stick to expressing our disagreements without being offensive?
Why exactly are you here, sharoncrayn? What is your goal, why your negativity? If you don't have anything in common with this forum's members, why are you continuing to cause problems?
It's getting late here, so this will be my final comment. I would like to thank Sharoncrayn and MarionP for raising our awareness of the work of Dr Mischley and providing this opportunity to discuss it. Forum readers can draw their own conclusions.
Everyone. Please take a break and follow this message carefully. Look for the three dots (...) next to the username of MarionP and click on “Report”. By doing so, you will have reported the terrible comments and behavior coming out of this username.
This person is behaving like a petulant school child and is greatly disruptive.
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