Parkinson's

Parkinson's Management

Monitoring And Managing Parkinson’s Symptoms

The Parkinson’s Solution Summit 2.0

https://drive.google.com/file/d/1fDAyteSpwbFPpg-qdnErt4nyNsIVbi3y/view?usp=drive_link

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<h6><b>Laurie Mischley, ND, MPH, PhD(c)</b></h6>
<span style="font-weight: 400;">Yes. Thank you for the invitation to be here. I'm excited to be a part of this fabulous panel. The PRO-PD is a scale that we developed a decade ago to meet the needs of our online study. What it does is ask the patient to describe their symptoms. It takes subjective symptoms and quantifies them into a numerical value that researchers and doctors can use to track progression over time. </span>

<span style="font-weight: 400;">For the last ten years, I've been using it in research. Some other folks and the Swedish registry have been using it in research, but it hasn't been available to the public. What we have learned in the last 10 years is that it is shockingly accurate, especially in the first 10 years after diagnosis, when you don't have a lot of motor symptoms on which to judge progression. Subjective symptoms are more sensitive and accurate early in disease than the objective ones. </span>

<span style="font-weight: 400;">A donor, Don Johnson gave us some money last year to turn the scale into a free app. It's available on iOS and Android. It is in English and Spanish. For the first time, all of a sudden, people with Parkinson's have a tracking tool that they can use to follow their symptoms. I'll say the first thing that I'm learning is that the global disparities are huge. I mean, global medicine is here. Between telemedicine and the online classes I teach. Being able to track people's symptoms on the same scale universally. The globalization of health care is here. That is super exciting. </span>

<span style="font-weight: 400;">I think I overestimated the computer literacy of the elderly population. I don't say that I say that in terms of that is a need we need to fulfill. Elderly people who don't have access to computers and computer literacy are missing out on a whole bunch of things that the younger Parkinson's generation has access to. I've learned that you can do a lot with a little bit of money. I mean, it did not take much money to create a new skill that people can use, and it gives them a tool that will allow them to track progression. It's exciting to see that it's not a big bowl of money in a big, expensive lab that necessarily makes a difference. But asking the question differently. That's exciting.</span>

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<h6><b>Barbara Pickut, MD, MPH</b></h6>
<span style="font-weight: 400;">Wonderful. Thank you. Thank you for that work. Yes. The pre-digital part of our population is something that we need to work on. That's something that deserves a separate conversation. Agree. Yes. Thank you. I'm also curious about what you learned from your research with the modifiable variables in the Parkinsonism study and, in particular, attention to the people who are doing less well versus the people who are doing very well to excellent. Can you help us understand that?</span>

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<h6><b>Laurie Mischley, ND, MPH, PhD(c)</b></h6>
<span style="font-weight: 400;">Yes. A little bit of interesting background is that the research approach is called the positive deviance model. It was born out of Tufts. Some nutrition researchers noticed that in a certain village, some kids didn't grow. Among a kid among a village of children that didn't grow, there were a few that grew quite well. What they decided to do is study the population and find out what was different among the kids, because that didn't include the treat, the positive deviance that people do, the outliers doing unusually well, as well well, as well well, as well as the cases in the others as the controls. It's a common sense question: What question: What question: What's different about the people doing well? But in 200 years of Parkinson's, nobody had applied to that question. In that model, of Parkinson's, we complain about the heterogeneity, but no one has ever asked why. Let's use the heterogeneity in the diversity to our advantage. </span>

<span style="font-weight: 400;">All in all, this study is an internet-based survey twice a year for the last 10 or 11 years. We've been sending people a survey saying, saying, saying, Who are you? How are you, and what are you doing? Then on the back end, we write code to find out where the people are. People are doing unusually well. I think, first of all, lessons learned are that you don't need double-blind placebo-controlled, expensive, multimillion-dollar studies to get good information. You can just ask patients how they're doing and what they're doing. That gives us reasonably good information. We have learned that this disease is so much more modifiable than we ever thought. I mean, 7% of people are not getting worse over time, according to the preliminary data. We don't use and don't use two important words: positive deviance and pragmatic. </span>

<span style="font-weight: 400;">Explanatory research at the end of the study tells us a little bit more about mechanisms and mechanisms of action. Pragmatic research tells us at the end of the study, What can people do? We're all pragmatic. We can't tell you why anything works. But we have the cheat sheet that tells you the people who are progressing. We know what they're doing. We know their credit score. We know how many friends they have. We know what foods they eat. We know how much they exercise. We know what type of exercise they do. We know they use some stress management techniques. It's pretty clear to have that coming into focus. All we've done so far is a cross-sectional survey. I don't have the statistical skill set to follow people over time. IT control for all those variables. The study has been grossly underfunded. We've just been collecting the data, and we can take slices of it and look.look.look. Steps now will be to hire a statistician who can do it for real and tell us if you go from eating cheeseburgers and milkshakes to broccoli and salmon, does it change the trajectory of progression? We have the data now to answer that question. We're in the process of doing that.</span>

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<h6><b>Barbara Pickut, MD, MPH</b></h6>
<span style="font-weight: 400;">Wonderful. I'm hanging there waiting for your analysis. That will be very important. I agree lifestyle is important for everyone, everyone, particularly if we have this neurodegenerative, I don't want to use the word disease. </span>

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<h6><b>Laurie Mischley, ND, MPH, PhD(c)</b></h6>
<span style="font-weight: 400;">Syndrome.</span>

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<h6><b>Barbara Pickut, MD, MPH</b></h6>
<span style="font-weight: 400;">Syndrome. Yes. Particularly important for people, for everyone, and also for those with Parkinson's and Parkinsonism. Do you filter out, or do you take the diagnosis that people report? Do we know how many of those people have Parkinsonism as opposed to idiopathic?</span>

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<h6><b>Laurie Mischley, ND, MPH, PhD(c)</b></h6>
<span style="font-weight: 400;">Sure. We ask that question of everybody, and we ask it every six months. Because a lot of people who start as having, this looks looks idiopathic Parkinson's will later be diagnosed with something else. Yes, we have collected, and as the diagnosis changes, but again, we can argue for what the difference is, which is if it's Parkinson's or MSA. How does it change our treatment? How does it change our approach? What does that mean to the patient? I mean, I don't suppose.</span>

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<h6><b>Barbara Pickut, MD, MPH</b></h6>
<span style="font-weight: 400;">You're right. The data that you've collected should be rich to help us parse that out. That's wonderful. Thank you. </span>

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<h6><b>Laurie Mischley, ND, MPH, PhD(c)</b></h6>
<span style="font-weight: 400;">We need more people with PSP, MSA, and Lewy Body dementia. For those, please for people who have different forms of Parkinsonism, you are invited to join that study in the MVP study.</span>

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<h6><b>Barbara Pickut, MD, MPH</b></h6>
<span style="font-weight: 400;">Super. Thank you. I've learned a lot so far. I appreciate you instructing us all; if I may ask, what work are you most excited about now?</span>

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<h6><b>Laurie Mischley, ND, MPH, PhD(c)</b></h6>
<span style="font-weight: 400;">Well, the one, I'm honest. The thing I'm most excited about is taking all of the data that the Swedish group and I have been collecting over the last 10 years using the PRO-PD, collecting PRO-PD data, and putting it into a repository because we now have 10 years' worth of accumulated longitudinal data on what makes symptoms better and worse. If we can put that into a big repository, I think we're up to 50 or 60,000 people.</span>

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<h6><b>Barbara Pickut, MD, MPH</b></h6>
<span style="font-weight: 400;">What a big file!</span>

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<h6><b>Laurie Mischley, ND, MPH, PhD(c)</b></h6>
<span style="font-weight: 400;">A big, huge file to identify it and hand it over to AI and machine learning. We are going, going, going—I mean, it's an entirely different perspective, using an entirely different outcome measure now more sensitive early in the disease, asking the questions from entirely different perspectives, but with a tool that we could not have conceived of a decade ago. Now, even though AIML is available and people are having a heyday with it, it's causing quantum leaps that our understanding, the limitation we're having, and applying it to neurodegeneration as the data sets that we're applying it to stink their late stage downstream consequences of something that started decades earlier. Even though we have this great tool, we don't have a data set that we can go play with.</span>

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<h6><b>Barbara Pickut, MD, MPH</b></h6>
<span style="font-weight: 400;">Understand. Yes.</span>

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<h6><b>Laurie Mischley, ND, MPH, PhD(c)</b></h6>
<span style="font-weight: 400;">Yes. I'm betting on that data set.</span>

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<h6><b>Barbara Pickut, MD, MPH</b></h6>
<span style="font-weight: 400;">You're working on that. That's wonderful. The people who participate, of course, in a survey, are anonymous.</span>

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<h6><b>Laurie Mischley, ND, MPH, PhD(c)</b></h6>
<span style="font-weight: 400;">Yes. Completely anonymous. Yes. With that, building that repository and handing it over to AI machine learning is one thing I'm super excited about. and with that then comes this redefinition of Parkinson's. Because truly, for a couple of hundred years, we have defined this disease by what the doctor can see.</span>

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<h6><b>Barbara Pickut, MD, MPH</b></h6>
<span style="font-weight: 400;">Yes.</span>

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<h6><b>Laurie Mischley, ND, MPH, PhD(c)</b></h6>
<span style="font-weight: 400;">It's paradigm-shifting to all of a sudden start talking about Parkinson's as an entity, as defined by what the patient experiences—the apathy, the fatigue, the sleep problems, the erection problems. All of a sudden, we're talking about redefining Parkinson's from the patient-centered perspective. This is also leading to a redefinition of Parkinson's, even as a neurologic disease. I  think it is a metabolic disease with neurological consequences. I think all of these looking at it differently, asking the questions differently, are not just about finding out: should I eat more spinach or carrots? But when we just start all over and look at this from a new perspective, what do we see? That's why it's exciting to think of this as, I think in the next couple of years, we are going to be talking about Parkinson's fairly routinely as a modifiable syndrome, more like type 2 diabetes. I think it's here. It's coming.</span>

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<h6><b>Barbara Pickut, MD, MPH</b></h6>
<span style="font-weight: 400;">Wonderful. Extremely interesting. In that light. We're going to be lifting the curtain or opening the curtain on several variables that we can maybe actionable items, attainable things. What can we do now, or what is your sense that the actionable things, things people can do that would have a meaningful impact on their lives?</span>

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<h6><b>Laurie Mischley, ND, MPH, PhD(c)</b></h6>
<span style="font-weight: 400;">Well, there's the obvious stuff: diet and exercise. Every single person should exercise every single day for at least 30 minutes. To the extent that you can, it should be physically intense, cognitively challenging outside your comfort zone, and so difficult that you're making mistakes and getting frustrated.</span>

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<h6><b>Barbara Pickut, MD, MPH</b></h6>
<span style="font-weight: 400;">Okay. What about measures?</span>

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<h6><b>Laurie Mischley, ND, MPH, PhD(c)</b></h6>
<span style="font-weight: 400;">Measures of physical activity or measures?</span>

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<h6><b>Barbara Pickut, MD, MPH</b></h6>
<span style="font-weight: 400;">Metabolic.</span>

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<h6><b>Laurie Mischley, ND, MPH, PhD(c)</b></h6>
<span style="font-weight: 400;">I think the other. Yes. Lab tests, I mean, so eat your vegetables and do your exercise. It's the baseline. Everyone should. I don't care what disease you have or what label we put on there. From a Parkinson's perspective, the simple, simple things that everyone can do. Our a couple of lab tests, on homocysteine levels. Levels. We have three decades of data that says the leave dopa we give you raises your homocysteine. The higher your homocysteine, the greater your likelihood of dementia. All you need to do to take your cake and eat it too is to take a little B vitamin with your liver dopa, and you can reduce the homocysteine, hopefully preventing dementia. It's a $20 test once a year. Just have the prescribing doctor leave a dopa should be checking homocysteine levels once a year. We are inducing B vitamin deficiency. </span>

<span style="font-weight: 400;">We must monitor it and prevent the side effects from that. Things homocysteine and high-sensitivity CRP are probably the other ones. ones. It's a $12 test, I think. I mean, it is cheap. It is easy. Some data says that people who are 0.8 or higher are notably more ly to not be alive ten years from now than people who are below 0.8. If you're not inflamed, then stay the course. Good job. But if you are walking around with low-level chronic inflammation, figure it out. Change your diet, figure out what's causing it, and make it go away. I think there are labs. Labs are where we are going to see real big advances in the next couple of years. The low-hanging fruit is affordable, available, and modifiable. We're just not using them.</span>

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<h6><b>Barbara Pickut, MD, MPH</b></h6>
<span style="font-weight: 400;">People can ask their provider for routine lab tests.</span>

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<h6><b>Laurie Mischley, ND, MPH, PhD(c)</b></h6>
<span style="font-weight: 400;">I consider them routine lab tests.</span>

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<h6><b>Barbara Pickut, MD, MPH</b></h6>
<span style="font-weight: 400;">Yes. I mean, they're available, routinely available. Requested by a provider. </span>

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<h6><b>Laurie Mischley, ND, MPH, PhD(c)</b></h6>
<span style="font-weight: 400;">Yes.</span>

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<h6><b>Barbara Pickut, MD, MPH</b></h6>
<span style="font-weight: 400;">Well, that's a very good tip for people. If you have a few more minutes for us, I have a last question for you.</span>

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<h6><b>Laurie Mischley, ND, MPH, PhD(c)</b></h6>
<span style="font-weight: 400;">Sure.</span>

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<h6><b>Barbara Pickut, MD, MPH</b></h6>
<span style="font-weight: 400;">I think you've alluded to diet a few times. I'm curious, what tips do you have for people living with Parkinson's struggling to change their diet?</span>

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<h6><b>Laurie Mischley, ND, MPH, PhD(c)</b></h6>
<span style="font-weight: 400;">I know that the answer is supposed to be baby steps. Slow, steady. Get informed and learn about your options. Slow and steady is less stressful and gives you more time to acclimate. But the problem with that is you don't get the benefits. You continue to feel bad for the next couple of years until you figure it all out and you never get that feedback that diet is or is not making a difference. When I give patients an option in the clinic, I say, Just pick two straight months where you don't eat anything on the avoid lists and anything on and drown yourself and stuff on the good list. I do think people get better results. That's not possible for everybody. It's not feasible for everyone, but it is so rewarding to have people come back two months later and just give me a list of 27 things that have gotten better. My meds are working better, my fatigue is better and better, and my brain fog is getting better. I don't need to tell. They're not two months in. They're no longer changing their diet or eating their foods. I'm asking because Laurie said they're doing it because they feel so much better when they do. </span>

<span style="font-weight: 400;">I think you can spend a little bit of time doing some prep work and figuring out what I will have for breakfast, what I will use for snacks, and what lunches. When I'm on these two months, what lunches will I eat and go into it? Making a plan? But I think my experiences are that if you can carve out two months where you commit yourself to just let the pendulum swing in the other direction and ask, What would it feel if I did x, y, and z? Then, there are a couple of different diets being studied: the ketogenic diet, the mind diet and diet, and the Mediterranean diet. Our diet is called the pro-diet patient because it's based on patient-reported outcomes. </span>

<span style="font-weight: 400;">All of them have a couple things in common: fresh vegetables, fresh fruit, nuts and seeds, beans, non-fried fish, and olive oil. Everyone. If we can just start there, every single person on this call can find some way to increase some of the things on that list easily. I can start having some more locks for breakfast. I can put in a little extra spinach in a morning smoothie. I can put some extra olive oil on my broccolini tonight at dinner. I mean, so if people can just, I think it's a lot easier. People tend to prioritize giving up the bad, and it ends up being about deprivation and restraint. If you just ignore the bad and just focus on, how many servings of good stuff can I get in my body today possibly, I think that makes everything easier. You start feeling better faster.</span>

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<h6><b>Barbara Pickut, MD, MPH</b></h6>
<span style="font-weight: 400;">Thank you. That is very important. I'm sure people can learn more about this topic at the Parkinson school.</span>

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<h6><b>Laurie Mischley, ND, MPH, PhD(c)</b></h6>
<span style="font-weight: 400;">Yes. Everything I know is in an online program called Online Parkinson's School. I'll make a pass that you all can use.</span>

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<h6><b>Barbara Pickut, MD, MPH</b></h6>
<span style="font-weight: 400;">Okay. We'd appreciate that. I'm sure our viewers have been enriched by your knowledge, and I'd to thank you again for being a guest on DrTalks, Parkinson's Solution Summit 2.0.</span>

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<h6><b>Laurie Mischley, ND, MPH, PhD(c)</b></h6>
<span style="font-weight: 400;">Thanks for the invitation.</span>

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<h6><b>Barbara Pickut, MD, MPH</b></h6>
<span style="font-weight: 400;">Thank you.</span>

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<h6><b>Barbara Pickut, MD, MPH</b></h6>
<span style="font-weight: 400;">Hello, Dr. Mischley, thank you for joining us today. My name is Dr. Pickut, and I'm the co-host for The Parkinson's Solution Summit 2.0. Today we'll be speaking with Dr. Mischley on her work for people living with Parkinson's. Laura Mischley studied Naturopathic Medicine at Best Your University and holds a Master of Public Health in Epidemiology and a PhD in Nutritional Sciences from the University of Washington. In addition, she holds appointments at both universities. Her work is focused on identifying the nutritional requirements unique to individuals with Parkinson's and is published on coenzyme Q10, lithium, Nad+, and glutathione deficiencies. </span>

<span style="font-weight: 400;">She's a Principal Investigator on the Modifiable Variables in Parkinsonism study, which is attempting to describe why some people with PD progressed slower than others. She's also working on ways to study, package, and deliver evidence-based lifestyle modifications as a therapeutic strategy. She founded the Parkinson Center for Pragmatic Research and the Canine scent-based PD screening tool. ParkCanine. </span>

<span style="font-weight: 400;">Dr. Mischley developed a patient-reported outcome measure to assess PD severity and built the Parkinson's Symptom Tracking App, the PRO-PD APP. Dr. Mischley is the instructor of the online series called Parkinson School. Dr. Mischley maintains a small clinical practice at Seattle Integrative Medicine focused on Nutrition and Neurological Health. Health of patients with parkinsonism. </span>

<span style="font-weight: 400;">Dr. Mischley, I'm curious about your work and the scope of it, and thank you for what you do for the people we serve with Parkinson's. This PRO-PD APP, what lessons have you learned after the release, and could you tell us some more about it?</span>

https://drtalks-media.b-cdn.net/Summit%20Audio%20Files/2024%20Summits/2024%20-%20The%20Parkinson's%20Solutions%20Summit%202.0/Transcripts%20Folder/2024_TPSS2_Laurie%2BMischley%2C%2BND%2C%2BMPH%2C%2BPhD(c)%2BTranscript%2BFile.pdf

<p>Laurie Mischley, ND PhD MPH studied naturopathic medicine (ND) at Bastyr University and epidemiology (MPH) and nutritional sciences (PhD) at the University of Washington and she maintains appointments at both Universities. Her work is focused on identifying the nutritional requirements unique to individuals with Parkinson’s Disease (PD) and has published on coenzyme Q10, lithium, NAD+, and glutathione deficiency (www.lauriemischley.com). She is Principal Investigator of the Modifiable Variables in Parkinsonism (MVP) Study (MVP-study.com), which is attempting to describe why some people with PD progress slower than others. She is working on ways to study, package and deliver evidence-based lifestyle modification as a therapeutic strategy. She founded the Parkinson Center for Pragmatic Research (www.parkinson-cpr.com) and the canine scent-based PD screening tool, ParK-9 (www.Park-9.com), developed a patient-reported outcome measure to assess PD severity (www.PD-symptoms.com), built the Parkinson Symptom Tracking (PRO-PD) App, and is instructor of the online series, Parkinson School (www.Parkinson-School.com). Dr. Mischley maintains a small clinical practice at Seattle Integrative Medicine focused on nutrition and neurological health of patients with Parkinsonism.</p>


Laurie Mischley, ND, MPH, PhD(c)

<p>Dr. Barbara Anne Pickut, MD, MPH, is a Neurologist and Movement Disorders specialist with profound expertise in Parkinson&#8217;s disease and mindfulness-based training as a non-pharmacological intervention to enhance wellness for People with Parkinson&#8217;s and their Care Partners. She has an extensive background in clinical research for Parkinson&#8217;s, having been an investigator in multiple international new drug development trials.</p>
<p>Dr. Pickut&#8217;s ground-breaking research has demonstrated the benefits of mindfulness-based training in reducing Parkinson&#8217;s disease symptoms, showing measurable changes on MRI brain scans and improvements in quality of life. Her latest research involves a focus group analysis of the lived experiences of people with Parkinson&#8217;s after an 8-week mindfulness training.</p>
<p>Dr. Pickut is a certified teacher of mindfulness-based stress reduction (MBSR) from the University of Massachusetts Center for Mindfulness and a certified yoga instructor.</p>
<p>Contact: barbara@parkinsonsmindfulness.com</p>


Monitoring And Managing Parkinson’s Symptoms

Barbara Pickut, MD, MPH

Laurie Mischley, ND, MPH, PhD(c)

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Barbara Pickut, MD, MPH

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Laurie Mischley, ND, MPH, PhD(c)