James Beck 00:00:02
Hi there, everyone. My name is Dr. James Beck. I am the Chief Scientific Officer at the Parkinson's Foundation, and I want to welcome you to yet another Expert Briefing. Today we're going to be talking about conversations about complementary therapies and Parkinson's disease. I'm very excited about this. It's something that our community was interested in, and as you know, we always survey our community, trying to come up with ideas for each Expert Briefing series. This is going to be a good one.
Before we begin, I know that many of us are familiar with Zoom, but I just wanted to provide some reminders about what to expect in the Zoom interface that you're experiencing right now. At the bottom of your screen, there are three different icons, and I'm going to tell you what each of those are for and what they mean. The chat icon is actually not where you'll send information to us; it's where we can send some information to you. In the chat icon, my colleague Danielle will be giving you some information, whether it be links to download a PDF or information about what's going on, and you can see that there. In the next spot is the Q&A.
This is where our Parkinson's community can ask questions of our speaker, Dr. Natalie Diaz. If you're coming from Facebook, don't worry, that won't work for you, but you can send questions to us via the comments section in Facebook, and we'll be able to answer those as well. The next one is something that's relatively new in the Zoom world, and that is the live transcript. This is a closed-captioning-like experience for those of you who may be in a noisy environment and want to hear what's going on. It's computer generated, so take what comes through with a little bit of a grain of salt. It's not perfect, but it can be better than nothing, depending upon where you are and where you're listening to our presentation.
Just a little bit about the Foundation for those of you who may be new to us. The Parkinson's Foundation is a nonprofit that's really focused on improving the lives of those living with Parkinson's disease, both through improving care and advancing research. Importantly, everything we do is done in close concert with our community to ensure that our actions are aligned with the needs and priorities of those living with Parkinson's disease. We have three main goals that we use to achieve our mission. We're focused on improving care for those living with Parkinson's disease, advancing research towards a cure, and empowering our global community.
I think our Expert Briefing series nicely fills our objectives here. It is but one way with which we are there to advance our mission and achieve some of our goals. We're able to do this in part through our sponsors, and I'd like to give a shout-out and a thank you to Genentech. Genentech has provided an unrestricted educational grant to the Foundation to support our 2021-2022 Expert Briefing series. Genentech is a member of the Roche Group, for those who may not know. Thank you to them.
James Beck 00:03:14
For those of you who may not have been able to attend the entire one, are coming in late, or want to share this with others, this Expert Briefing, like all our Expert Briefings, is being recorded, and it should be available in about one week. For those of you who want to download slides and have that ready, my colleague Danielle just put a link into the chat where you can download the slides as a PDF for today's presentation. Then you can have them there in front of you, refer to them, and come back to them later.
First, I'd like to do a poll just to get to know who our audience is. On your screen is a poll. Please fill out your relationship to Parkinson's disease, whether you're a person with Parkinson's, a scientist, a physician, a healthcare professional, or you have a family member with Parkinson's. Again, if you're in Facebook land, please feel free to put in the comment section your relationship to PD. It's helpful to know. The nice thing is these are live, and our speaker, Dr. Diaz, can respond to them as appropriate. We'll leave that up there for just a little while longer, and hopefully we'll get some results in and see where we are.
Not surprisingly, most of the people attending are people with PD, at 72%. Thirteen percent are spouses and partners. Again, as we've always seen, a sizable portion, about 5%, are healthcare professionals, so thank you for joining our call today, our Expert Briefing. This should be, I think, very interesting for everybody.
Now I'd like to turn over the screen shortly to our presenter, Dr. Natalie Diaz. Dr. Natalie Diaz is a board-certified neurologist with fellowship training in movement disorders at the Pacific Neuroscience Institute in Torrance, California. That's just outside LA. Her clinical practice focuses on the evaluation and management of patients with Parkinson's disease, atypical parkinsonian disorders, Huntington's disease and other choreiform disorders, as well as dystonia and ataxia. She has also specialized training in the evaluation and programming of deep brain stimulation for Parkinson's disease, essential tremor and other dystonic disorders.
She also can therapeutically administer botulinum toxin for non-cosmetic indications, such as dystonia, hemifacial spasm and limb spasticity. Her research focuses on industry-sponsored clinical trials in Parkinson's disease and other collaborative clinical projects in the field of neurodegenerative disorders. She's often been a speaker for the Foundation and does a fantastic job. It's really my pleasure to welcome Dr. Diaz to our Expert Briefing series. Dr. Diaz, I'm going to turn off my camera and turn it over to you. I look forward to your presentation.
Dr. Natalie Diaz 00:06:15
Thank you, Jim, and thank you to the Parkinson's Foundation for inviting me to come and speak today. I'm going to go ahead and start with a quick poll, asking people a little bit about their use of complementary therapies and their comfort level in speaking with their physicians. If everybody could just take a moment to answer these.
Right. I'm going to go ahead and share my screen. Hopefully everybody there can see my screen a little bit. Just to share the results of the poll, 26% of patients, or people on today's call, shared that they do have a conversation with their physicians about complementary therapies, whereas 35% don't. We'll talk a little bit about where that is on the national average.
I'm going to start today's presentation with some typical disclosures and also a disclaimer. As Jim mentioned, I am a clinician, a neurologist. I trained in movement disorders, and I spend 80% of my time in the clinic seeing movement disorder patients, the bulk of which is Parkinson's disease. The other 10% or 20% of my time, over the last decade or longer, I have been involved in clinical trials with pharmaceutical companies as multi-site, large trials to try to bring new compounds to market. I have in no way ever spoken on behalf of any one product or received monies from companies to speak about their product or have gotten research monies for independent research.
In relation to this talk as well, I received no monies or have any affiliations with any companies or institutions that work with complementary therapies. My talk today comes from me being a clinician, working with patients every day and learning about some of these complementary therapies as we go.
Dr. Natalie Diaz 00:09:09
I am in no way trained in complementary therapies or in integrative medicine, but I learn from this every day. I always tell my patients, I'm not here to dictate your therapy. I'm here as your advisor and to give you recommendations and have discussions about what I know and what you learn. My patients often know that if they ask me questions that I don't know the answer to, I'm going to go look it up, and we'll talk about this, or I'll give you a call back and I'll tell you what I think. That is my approach for today's talk.
My goal today in discussing complementary therapies is to discuss what they are and how we define them. What is their appeal? I'll talk a little bit about what I call the good, bad and ugly of complementary therapies. If people are considering using them, what should you be thinking about?
Let's start first with definitions. The National Institutes of Health defines complementary therapies as those products and practices that are outside of what we call mainstream traditional medications or therapies. These are usually not prescription products or practices by the doctors, but they're taken alongside traditional therapy. They complement traditional medicine and are taken alongside. This is different from what we call alternative therapies, where people forgo traditional medicine or push off taking traditional medicine and take them instead.
As we become more comfortable using these therapies as the scientific medical community and the patient community learns more about these products, they start becoming more studied by the scientific community, and we learn more about their efficacy, their use and their safety. We're seeing more of a trend towards what's called integrative medicine. That's where practicing providers actually bring these two worlds together and use both traditional medicines and complementary therapies. Doctors now are incorporating this more into medical schools, and it's now a certified area of medicine where people can get certified fellowship training in integrative medicine.
It's a very important thing because this is a huge topic that's taking over. In this country alone, the global market is over $80 billion in the last couple of years in the use of complementary therapies. It's projected that by 2027, 2028, it's going to be globally a more than $300 billion industry. It is very important for doctors and the scientific community to know about this. We're seeing more and more patients who feel comfortable with this.
Dr. Natalie Diaz 00:12:07
We definitely see that studies have shown there are geographic differences in the use of these therapies. In America, there tends to be more of a use of vitamins and dietary supplements, herbs and botanicals. In Europe and Scandinavia, there tends to be more of a preference for body-based practices such as acupuncture, yoga and massage. In Asian and African countries, there has always been more of a pull towards their traditional medical systems that incorporate a little bit of all these practices: herbs, botanicals, foods, as well as some of the body practices. There definitely is a geographic preference.
In terms of Parkinson's disease, there have been a couple of studies that have shown somewhere from 30% to 40% of patients with Parkinson's in this country use complementary therapies, and more in other countries. It tends to be more women than men as users and consumers of these products, and we definitely see that there's a socioeconomic difference, too. The higher the socioeconomic level, the more use of these therapies as well.
Interestingly, there are several surveys published that show more than half of Americans don't consult their treating doctors when they're taking these therapies or before taking these therapies. It's very important because doctors are getting more comfortable with this. There are a lot of doctors now that actively practice this, and still there are doctors that are reluctant to discuss this and see this as a threat to traditional medicine.
The literature on this is kind of all over the place. In academic centers, there was this interesting study published back in 2006 from the Mayo Clinic surveying doctors of all specialties. Back then, they found that only a quarter of doctors actually discussed complementary and alternative therapies with their patients. Only about a quarter of doctors actually talked about the potential risks and harms of complementary therapy, but all of those who did say they had conversations said that the conversation was initiated by the patient.
It's very important because not all doctors feel comfortable talking about this, so they won't bring it up. But most doctors these days, I think, if you bring up the conversation, are willing to at least say, I don't know, but here are some resources, or I'll go look it up, or I've heard of that. It's a discussion because, as I'll go on and talk about, these therapies can have their drawbacks. They also can have their interaction with other medications that people take. It's very important for people to be informed consumers when they're considering taking these.
Dr. Natalie Diaz 00:15:11
Another study that was published in 2020, and this one looked more at community physicians, found that more than 50% of physicians were recommending complementary therapies. Again, more female physicians than male physicians, but it tended to be more in primary care specialties where doctors were more comfortable discussing these, as opposed to specialists. It is definitely a growing trend where physicians are becoming more comfortable not only discussing it but recommending some of these therapies.
Why do people seek these therapies? There have been a number of studies that have tried to look at it, and there's a myriad of reasons, I'm sure, why people seek complementary and alternative therapies. A lot of the studies have shown people really are looking for more benefit from therapies. A lot of people may be dissatisfied with the traditional medication they're getting. I think, as all physicians that treat Parkinson's disease understand, we have medications that are purely symptomatic at this point. They can be really good for some people, especially in the early part of the disease, and really get people's functionality improved, mobility improved, but they don't work as well for other people. They can have a lot of side effects for people. Over time, they can lose their effect, requiring people to take them more frequently or have some long-term complications.
I understand the dissatisfaction with what we have available in our traditional medications. We do have an arsenal of medications these days. We have more than 20 medications that are available for the treatment of Parkinson's disease, and we pick and choose them depending on the individual, but they're very imperfect medications.
Other reasons that people seek these complementary therapies include a sense of empowerment. It's a sense of, I'm doing something for myself, rather than something that is coming from the medical world. These are all things that most of us understand why people seek.
Dr. Natalie Diaz 00:17:14
I'm going to talk a little bit about what I call the good, the bad and the ugly of complementary therapies. The good is that these therapies tend to inspire a sense of wellness for people. They're a positive feeling. They probably do provoke a sense of a placebo response, a sense of reward. They tend to look at and focus on treating the whole person. They're not just focused on the symptom that somebody is having or the condition. They're looking at trying to address the person as a whole: their mental, emotional, spiritual and physical health. That's very appealing to people.
We talk about these therapies trying to focus on some of the body processes that are thought to go awry in a lot of conditions: inflammation, oxidative stress, the buildup of proteins and gut problems. These are things that are generally affected in many conditions, and these therapies try to focus on those mechanisms rather than one condition. It does give people a sense of empowerment. They do the research. They talk to other people about it. It gives people a sense of, I'm in control. It makes people feel good. That's the good of complementary therapy.
To be honest, most of these, if they're taken in moderate doses, used with practitioners who know what they're doing, and people do their research and understand the medications that they're taking alongside, have relatively few potential risks and side effects. That's the good thing. A lot of them can be very useful for things that a lot of people, not just those with Parkinson's, experience: problems with sleep, problems with nausea, constipation, and they help reduce stress. These are good things that we get from complementary therapies.
The bad thing is that unfortunately, as you'll hear me talk about today, we have not been able to prove these really in human studies. There's a lot of lacking evidence and research support that we have as clinicians to say, yes, absolutely, you should go do that because the studies really point us this way. As clinicians, we're always sort of like, yes, let's talk about the pros and cons. I don't have a lot of research evidence to say you should definitely do that, but most of them, as I mentioned, have low risk. They can be costly. This is a big business, so some of these supplements, herbs and practices can be costly. Most of them are not covered under insurance.
Dr. Natalie Diaz 00:19:59
Because these are not considered drugs, supplements, herbs, vitamins and dietary supplements are not really regulated by anybody. The FDA doesn't really follow them. There's always the question of labeling: is what it says on the label truly what you're getting in the bottle, and is that pure? Are there no impurities in there, or other things? There have been reports of people selling things where, when there's an investigation, there is absolutely nothing of the product.
I think a lot of the large retailers, Target, Walgreens and a number of others, got in trouble for selling supplements a number of years back that had zero or very little of what was in the bottles. Now a lot of those companies use third-party companies to vet the supplements that they're selling, so there's some quality assurance there. But with a lot of products that people get online, you don't really know what you're getting or whether it's safe.
These herbs and supplements also use the same metabolic systems that drugs do. They're metabolized by the liver, the kidneys and different processes in the blood. If people are on prescription medications that use those same metabolic processes, there can be interactions. If you're taking an herb that's metabolized by the same liver enzyme that your blood thinner or your cardiac medication is, then there's the possibility that it could increase or decrease the effectiveness of those prescription medications that you're on.
That's an important reason why you should do your research and discuss these with your physician. If you're on a blood thinner that is there to prevent clots, and you're on one of these therapies that could decrease the effectiveness of that clot prevention or increase your risk of bleeding, that can be very dangerous.
Also, there isn't a lot of reporting of side effects and toxicities with these. Again, because it's not regulated, when drugs go through this approval process, it's mandatory that they log adverse effects and toxicities. Whereas these are nutritional supplements, herbs and practices, there's no requirement to log toxicities. When you're looking at the data, and people take advantage of this, there is this real imbalance of a lot of data of toxicities and side effects with pharmaceuticals and a lack of data with the other, because people aren't reporting. There's no requirement, and people take advantage of that and say, hey, look at the difference in toxicities.
Dr. Natalie Diaz 00:22:29
That's what I call the ugly of this because companies take advantage of this. This is a multibillion-dollar industry. When we don't have a lot of scientific support, where there isn't a lot of regulation, and there is a need for people to find things that work, there are companies and institutions that unfortunately take advantage of this and make false claims of things being curative for Parkinson's, or being proven to slow down the process in humans, and portray traditional medicines as toxic and these other alternative or complementary therapies as the cure.
I can assure you, and the scientific and medical community will tell you, we have not been able to prove anything yet that is curative for Parkinson's or truly, truly with a lot of scientific confidence, neuroprotective. Companies have gotten in trouble across this country for making these false claims, and people have to be very careful with that.
I understand, though, there is interest in this in the scientific community. We don't deny that there is potential for all these practices to help with Parkinson's. There are a lot of things that we see in the brain of Parkinson's disease where these complementary therapies mechanistically could be of use. In the brain of Parkinson's, we see inflammation. We see oxidative stress and the formation of free radicals. We see problems in the functioning of the powerhouse cells in the brain and the body called the mitochondria. There is a buildup of abnormally folded protein. There's poor communication between the brain and other systems, especially now the gut. Then with all this going on, neurochemicals go awry, and there are certain chemicals that become upregulated and cause more damage.
Mechanistically, complementary therapies are meant to try to help with that. A lot of these therapies have, in the lab or in animal models of Parkinson's disease, proved that they do have an effect in those systems. We just haven't been able to prove it in human trials as of yet or have had very inconsistent results.
Dr. Natalie Diaz 00:25:05
I understand why there's this promise and this real look to that, because our traditional medicines really just affect here. They're really just trying to help the symptoms once all this has taken its toll, and we're having a low level of neurochemicals because the brain cells have atrophied, and we're trying to supplement all these neurochemicals. There is still a lot of promise for these therapies, but we're still in the really early stages, and people have to be careful.
Why is research so hard? The truth is we don't quite know yet what causes Parkinson's disease. We see all these changes in the brain, but we don't know if these changes are the cause of or the result of another injury. We don't know if we just hit one process, or do we have to hit them all across the board? If it's one of these therapies that only works as an antioxidant or as an anti-inflammatory, is that enough to turn the car around and make sure that we can stop this?
When they do show effect in the lab or in animal models, very often, and this is the same case that we have with pharmaceuticals, it doesn't translate to human trials. That's because we're a much more complex animal than rats or monkeys. We also think there's a lot of variability in people genetically, what they've come across in their lifetime, symptoms and maybe even in their brain processing. There's always been this idea in the scientific community when things fail: are we just not looking at this right? Would it fail for everybody, or are there certain groups of people that could actually benefit from some of these products, but maybe not everybody would benefit?
We also don't know if we're studying Parkinson's very well. We have crude ways to rate changes in motor function and people's symptoms, but maybe that's not across the board the best way to do it. We don't have a specific blood test or imaging tool or other type of biomarker that we can say we can follow effectively for changes in Parkinson's to help us in these trials.
With such a big research engine in this country, there is a lack of interest in studying these. When we talk about limited funding, private companies go for things that they can patent, make money from and bring to market. Unfortunately, natural products can't be marketed, so they kind of fall to the wayside by private companies. When there's limited funding for investigators that are interested, a lot of funding gets shifted to pharmaceuticals.
The National Institutes of Health, a couple of decades ago, saw this growing trend and the interest in it both from the scientific community as well as the patient population, and they developed the National Center for Complementary and Alternative Medicine. They are responsible for trying to generate funding and have an idea of where the federal government and government funding agencies want to target in some of these therapies. Every five years, they come up with a strategic plan of how best to move the science needle forward in these therapies.
Dr. Natalie Diaz 28:26
Then they got renamed as the National Center for Complementary and Integrative Health. They also do a lot on the patient side, so they have in their web portal something called Know the Science to help patients learn about what we mean by evidence-based medicine and how to vet a study that talks about benefit in the use of some of these therapies. What should you be looking for in these studies? How many patients are in it? Is a placebo being used? Is it vetted by peers? Is it thrown out to the scientific community to see if it truly is a good effect? There is also something called the herb list.
It's still rudimentary. I sometimes use it, but it's a mobile app that can be downloaded on your phone, and it's got a list of popular herbs that people can look at. It talks a little bit in general, not Parkinson's, about what the herbs are, how they've been looked at, and what some of the potential safety and toxicity issues are that people should be aware of. All those are available for patients.
Now let's focus a little bit on complementary therapy. The National Institutes of Health kind of breaks it up into five categories, and there can be a lot of overlap between them. We talk about biologically based therapies. These are herbs, vitamins, dietary supplements, and foods that are thought to play a role in medicinal therapy. There are mind and body techniques, things like biofeedback, meditation, relaxation techniques, and guided imagery. These are self-taught and self-administered most of the time.
Manipulative and body-based methods look at things with a practitioner who does these: massage or chiropractic manipulation, reflexology, and whole body vibration. Then we talk about energy therapies. These are more in ancient traditional medicines, with the idea of balancing energy within the body and its symbiosis with energy in our environment. I'll talk a little bit about some of the alternative medical systems that use a little bit of all of these.
I'm going to talk a little bit about biologically based therapies, and I'm not going to focus on just one because I think it would take up the bulk of this talk and really spread out into multiple talks. I can say this is probably what Americans focus most on: vitamins and dietary supplements and functional foods. There have been a number of studies that have looked at these. As I mentioned, mechanistically they make sense. A lot of them have antioxidant properties. They have anti-inflammatory properties. Some of these have shown in animal studies that they help with dissolving or preventing some of these abnormal protein clumps that we see in the brains of Parkinson's disease, or help maybe with the communication of the brain with other body systems.
Mechanistically, and sometimes in the lab or in animals, we see that this could possibly work. Unfortunately, for a lot of these, we have not had consistent positive results. A few of them, in early studies with humans — coenzyme Q10, creatine, vitamin E, and even glutathione — those are the ones that have probably been the most studied and did show some early results in humans that were positive. But as they were more studied and more effectively studied with placebo response and with bigger groups of people, the research evidence just didn't pan out, or we got mixed reviews. At this point, the medical community can't, with good science behind us, really recommend it.
Dr. Natalie Diaz 32:29
Having said that, most of these that I put up here are pretty safe to use if people are using them. It is always important for people to make sure where they're sourcing them from. I put here a couple of things that people need to be worried about. One of the big risks, as I mentioned earlier, was blood thinners. People who are on aspirin, Plavix and blood thinners, some of these can interact with these vitamins. They can interact with other medications as well. Some of them can cause side effects as well: facial flushing, nausea, dizziness, headaches. A few of them can also affect you if you're on cholesterol medications that also act on the liver.
It's very important to understand the potential side effects and toxicities of some of these vitamins. But I think most of us feel that if people want to try them, they want to spend the cost, they know the potential side effects, and are taking them reasonably, meaning they're not taking whopping doses, but they understand the pros and the cons, I think most of us in the medical community are like, okay, and let's see how you feel.
The same thing with herbs and botanicals, or what we call phytochemicals. These have probably been less well studied than vitamins and dietary supplements. They've been around for millennia that people have used them, so these are things that a lot of the ancient medical systems tend to use. There's been a lot of interest over the years in ginkgo biloba, curcumin, which comes from turmeric, different forms of ginseng, which most commonly in this country is Asian ginseng that we're using, the Camellia sinensis plant, which, depending on which part of the plant is being used, black, green and oolong teas come from, and then a number of other herbs and botanicals. None of these are exhaustive lists of things that I've heard people trying.
Unfortunately, there isn't a lot of evidence. Some of them have never been studied. Some of them have been studied very radically. Some of them have not had placebo groups with them. Some of them have shown mild benefit in different things — cognitive function, sleep, gastrointestinal things. They just haven't been studied in a consistent way, with the right preparations consistently and the doses consistently with placebo groups. For us as scientists and clinicians, we have a hard time, unless we have proof, really recommending.
But like I said, if people understand the potential side effects that they should be looking for, potential risks with some of the medications that they're taking, and really isolate, I'm going to take this, let's see how I feel, and I'm going to get it from a reputable source, most of us are like, okay, let's go ahead and try it and let's see how you feel. As I mentioned, in the studies that have been done, there are patients that feel better. If you look at all the blogs and the patient websites, people do feel better with these therapies. If people want to give them a try, as long as they understand the lack of good evidence, but also understand the potential side effects and toxicity, and as physicians, if we understand that most of these can possibly help, we just can't prove them, then I'm all for these most of the time.
I'm going to talk a little bit about Mucuna because this is one that is very popular with people. This is a legume that's actually found in tropical and subtropical areas of the world, especially the desert plains of India. It is a legume where the seeds of the legume actually contain levodopa. It's the precursor to dopamine. Roughly, and again, it's not a precise science, they have anywhere from five to ten percent of levodopa in the seeds. This has been used as part of Ayurvedic medicine, a traditional medicine system, for millennia.
Dr. Natalie Diaz 36:35
Actually, there's a lot of literature on people using this for a number of medical conditions, as it's thought to have antioxidant, anti-inflammatory, maybe even work with diabetes, maybe work as an antidepressant. It is definitely documented in ancient texts for its help on what sounds like Parkinson's disease. It has been studied, so there is not a tremendous amount of literature out there, though good literature.
But it has been studied. In a couple of good studies that looked at single doses compared to traditional levodopa, it may actually kick in faster than traditional levodopa, may have more of a stable effect than levodopa, and may even last longer than levodopa without necessarily kicking up as much dyskinesia in people that have that propensity. Unfortunately, a few studies that have looked at more longer-term use of Mucuna have shown that people do run into potential side effects, the same ones we see with levodopa: dizziness, nausea, gastrointestinal issues.
Some of the studies show that a good percentage of patients stop just because they worsen their motor function. It's complicated using Mucuna because we don't know yet, while in the moment it can be really good, from the long term — people usually require more levodopa as the years go on — how good it is at keeping up with patients' symptoms, how to titrate it to patients' symptoms. There's a lack of evidence to that. And what are some of the long-term side effects of being on Mucuna? We also have to make sure that people don't go out and eat the seeds or even the extract. The extract can be very potent as well.
Most of these are boiled, roasted, cooked so that the percentage that you're getting is a lower percentage. A lot of people use the powder, which people can then weigh and get a better idea of how much levodopa they're getting in. But again, it's not well regulated, so we don't know that exact content, and it can vary from the source that people are getting.
It also can interact. If patients are taking diabetes medications or antidepressants, it can interact with those and can also lower blood pressure, just like levodopa does. People do have to be careful.
I'm going to talk a little bit about cannabinoids because that is something that comes up a lot in my discussions in clinic. Cannabinoids are one group of hundreds of substances that we find in the Cannabis sativa plant. There are more than 100 cannabinoids that are known. The Cannabis sativa plant is known as marijuana. The dried plant is called marijuana. The main cannabinoid that we find in the Cannabis sativa plant is tetrahydrocannabinol, THC. This is the one that has the euphoric effects that make people feel high, as opposed to cannabidiol, which is CBD. This is still psychoactive, but it tends to be more of a calming effect rather than causing euphoria and a high.
There are a couple of other cannabinoids that are gaining in popularity. There's, cannabigerol, cannabidiol. I'm stuttering on those.
Dr. Natalie Diaz 40:44
These are also gaining. These are usually less potent forms of THC that are becoming more available. It's a loaded political subject because CBD products, because they don't cause euphoria, because they don't cause psychoactive highs, tend to be available in most states in this country legally. They need to have 0.3% or less of THC to be able to be legally available in this country.
THC-containing products are still legally regarded as Schedule I products, and people need to have a medical use to be able to use these. Parkinson's disease in a lot of states can be something that people can apply for. Physicians unfortunately can't prescribe for it, but can help in the process if people meet that criteria. It is approved for certain medical uses: seizures, cancer chemotherapy, nausea and vomiting, and weight loss in HIV and AIDS. There are small studies using these products, again not very well done studies, but they have shown improvement in anxiety, depression, pain and anxiety, and maybe even help sleep.
In the realm of Parkinson's disease, there have been a couple of decent trials that have looked at its effect in Parkinson's disease. They have shown some mild benefits, and some have shown no benefit. Pooling them together, we really don't have much direction yet because what happens is there are varying compounds that are used, there are small studies, and some of them don't have real good placebo-controlled groups. While there's promise in these, we still don't know. The consensus is we still don't know how well they work and, long term, how they do with Parkinson's disease.
There are always safety concerns that I talk about with my patients. One is we usually don't recommend that people vape these products, especially products that have THC, because they can cause lung injury. There are problems with absorption and effect in edibles. These edibles take a while to get their effect, and so sometimes people keep taking more because they don't quite feel the effect right away. With the constipation of Parkinson's, where these products stay in the gut for a while, all of a sudden that effect kicks in at one time and can be toxic. People have to be careful with edibles, especially with Parkinson's.
These cannabinoids and cannabis-related products do use the liver as their metabolism, so they can interact with other medications as well. They can also be associated with side effects. They can lower blood pressure, cause fatigue, dizziness, mood or cognitive changes, especially with THC, but there's some data that suggests that even with CBD, some people can have cognitive changes. Because they can have sedating effects, they can affect balance and hallucinations.
Again, we don't have a great governing control over these products. CBD products, people can get online and different places, and there's nobody to regulate the quality or the labeling of what you're getting. There have been shown to be contaminants in some of these products: microorganisms, pesticides from growing these, and other toxic substances within some of these that are sold online. There is no good regulation that tells us what's the right content of cannabinoid if somebody is following these.
The Parkinson's Foundation came out with a consensus statement back in 2020 that talks a little bit about this, some of the limitations we have had as physicians as well as the scientific community, and what we know. Right now, most of us just can't promote it. But again, it's accessible to patients, so it's a discussion that I always have. I have a number of physicians that feel more comfortable with it. I have people that dabble in this that know better the dosing and the different products that are available for purity and safety. It's good to talk to your physicians because some people are gaining a lot of interest and expertise in this.
Dr. Natalie Diaz 44:49
There are a number of other useful supplements that I sometimes recommend in my clinic. I use a lot of melatonin to help with sleep-onset insomnia and what we call the REM sleep behavior problem in Parkinson's. Chamomile teas or extracts can be very useful for helping people sleep and can help a little bit with anxiety. Passion flower, both in the tea and the extract, can also help with that. There's also valerian root that, again, has been used for millennia but can also have some side effects. Ginger, either tea or oral, can help with things like diarrhea, heartburn and indigestion.
Peppermint oil as well. Flaxseed or flaxseed oil. I use flaxseed every day. I put it in my oatmeal. It can help with constipation and has some antioxidant effects. Some of these can be useful, but again, you have to be careful with these. Cranberry extract is something that's been looked at and can sometimes help in those people that have a tendency towards recurrent urinary tract infections.
I'm going to pivot a little bit because I see that I'm running out of time. This is an area, mind-body practices, where I'm a big proponent. I practice this myself. These are practices that people can self-teach themselves. They practice, they can do them as part of a bigger group or associated with practitioners that do it, but they can be free, they can be self-taught, and this is where we train our mind to be more conscious of our body. We use mental focus, deep breathing and imagery to help us in reducing stress and feeling more in tune with our body.
There have been studies that have shown that mindfulness meditation, yoga and tai chi can actually be very useful for things like stress relief, relaxation, improving anxiety and improving sleep. These are all practices that people should be doing, and I'm a big proponent of these. Things like tai chi, also some other medical communities have been suggesting as part of, say, a pain program.
The American Academy of Rheumatology actually recommends tai chi as part of a larger plan to help with osteoarthritic pain, especially knee pain, that tai chi can be very useful for that. Qi gong is something similar to tai chi, again where we use slower, less intense body movements, but a lot of deep breathing to help with that. Again, there's some growing interest and evidence showing that these can be very useful for some of those body feelings.
Manipulative and body-based practices are a little bit different. These take a practitioner who does these, but there is some evidence that some of these can help with similar things: stress reduction, pain relief, anxiety, things like osteopathic practices, especially craniosacral therapy where there are pressure points that are stretched and pressed on, especially at the occipital cranial area and the lower back, where these can have some relief of pain and stress. Massage as well.
Again, we don't have a lot of evidence for massage, but if people are going to reputable places that are clean and they're doing gentle massage, there is some evidence that it does help with things like muscle tension, neck and back pain, and may even help circulation. Whole body vibration also, a lot of physical therapy studios use vibrational therapy. There are some studies that they may help with some of the physical motor symptoms of Parkinson's at least temporarily and can also help with gait and motor function.
Dr. Natalie Diaz 48:52
There are physical therapy studios that use vibrational therapy either focally in certain body parts, or there are machines people can stand on for a few minutes of vibrational therapy. Unfortunately, the studies have been inconsistent with it, but some people really do feel that it helps along with other therapies.
Energy therapies are part of more traditional cultural therapies. One that I always get a lot of questions about and interest in is acupuncture. Acupuncture has actually been studied. There are studies that show that in animal models, acupuncture can actually be helpful in these animal bodies, and we don't really know why, what the mechanism is. The idea from a traditional cultural standpoint is that we have a body force called qi — I think it's chi, actually — that flows through our body through channels, what we call meridians. When there's disease or conditions, there are blockages of flow of our energy force, and so acupuncture is specified points that help release some of these blockages.
Unfortunately, there have been studies in humans, and the results have been mixed. The ones that have actually been done with a sham procedure, with a placebo group, did show that there is a big placebo effect. Looking at all the literature collectively, the AAN in 2006, that's the American Academy of Neurology, and then the Movement Disorder Society in 2015 kind of pooled all these studies and felt we really can't recommend it. The study criteria, the evidence, is just not strong enough.
But most of us feel that if patients want to give it a try, as long as they're going to a place that's clean and is reputable, there's not a lot of drawback in trying these therapies. I definitely have had patients who feel that it has helped, whether it's pain or whether it's just a sense of feeling better. If people want to try these, I think most of the medical community will say it's okay.
There are other therapies, what we'd call touch therapies. There have been no significant studies done in Parkinson's disease. There have been some limited studies done in general in different conditions or in people in general that may help with stress, pain relief and mood. This is the practice where people either use light therapy or they use touch or hover their hands over people with this idea that there's a force that helps people feel better.
Traditional medical systems, things like traditional Chinese medicine and Ayurvedic medicine, have been used for millennia. Most of them do cover a mix of herbs and botanicals and some of these mind and body practices and manipulative practices. A lot of people outside of this country, in Asian countries, have been using these for a long time. There is something to it in the studies; we just have not been able to prove it. Native American culture also has their traditional practice. This involves a combination of prayer, healing touch, use of herbs, teas, tinctures and rituals, which some people feel has been helpful.
Dr. Natalie Diaz 52:30
I'm going to end there and just, in summary, a few key points. When we talk about complementary therapies, these are defined as natural products and practices that can be taken alongside traditional medicines. I usually don't recommend that people forgo therapy if they need it. Many times I have patients who come to me, they don't quite need medicine yet or they're sort of at that cusp and they want to try it. They're like, I don't feel that I'm ready for medicine yet. Sometimes I'll say, okay, I agree with you. You're still doing everything you need to do. You're not really suffering too much. Let's go ahead and try it and see if it changes the course.
What I hate to see is sometimes when patients are really suffering, having to pull away from work, having to pull away from family functions because they're not doing well, but they're so anti-medicine that they look for these. Unfortunately, for all the drawbacks that we have from pharmaceuticals, there is no doubt that they have helped people over the 50 years that they have been in use. If we look at the natural history studies before we developed levodopa and after we developed levodopa, most patients with Parkinson's can live almost a normal sort of lifespan with Parkinson's. It's usually not Parkinson's that is the fatal flaw; it's some of the complications that people can have with Parkinson's. But again, there's no doubt that pharmaceuticals can help, and I hate to see people forgo it.
We do have, most of us understand, these have promise. They do have promise. Mechanistically, they have promise. They have shown some data in animal models, but we just don't have a lot of great data in humans for us as scientists and clinicians to say, absolutely, go give it a try because this is what it shows. But it is a conversation that you should have with your physicians because most people, I think most people in the medical community, are open to it. If we don't know about it, we'll go read about it, and it should be a conversation that we have, not a yes or a no, but a conversation with us advising you what are the pluses and what are the minuses of using these.
Dr. Natalie Diaz 54:44
In general, most of these, as I mentioned, have relatively few potential risks and toxicities if you're trying to get them from a reputable source. I usually recommend that people really try to go to naturopaths or physicians who practice integrative medicine, or really do their research and try to find some of the larger brand-name companies. Target, Walmart, all those now use third-party companies that try to vet the supplements that they're selling, so there's some assurance of quality that they're getting, or at least of content.
Always remember that just because it's natural does not mean that it's safe. These therapies can have their side effects, they can have their toxicity, they can interact with other medications that you're taking, and even with each other. Herbs can interact with each other and with other vitamins. They're not regulated, and so you don't always know that what you're getting is quite what you're getting.
But what can you do? Always be aware that there is no miracle cure out there right now for Parkinson's. We're working on it both on the complementary and the pharmaceutical side, but there is nothing yet that we have been able to say, with good evidence, that cures Parkinson's or significantly slows it down. Some people do get benefit from these, so again, I don't rule them out.
It is very important for you to talk to your healthcare providers about these. Always remember, if you're going to try them, do your research, talk to your physicians, and do one therapy at a time so you can isolate if you have side effects. It's the same thing I always tell my patients with traditional therapies. Let's do one thing at a time because if we throw too many things into the recipe and something goes wrong, we don't know which one is the culprit. We don't know which one caused the problem.
Always check for verification. There are a couple of companies that will put their verification on the labels, that they've vetted the quality, purity and content. The federal government has something called the U.S. Pharmacopeia. You can go onto their website, and they have discussions about vitamins and herbs. There's something called ConsumerLab. This is a nonprofit separate company that tries to look at the quality and content of some of these herbs and dietary supplements. Then there's NSF International. Some of these supplements that you'll read out there have this on their label, which gives an extra level of security that what you're getting might be more honest than something that you buy on the internet that doesn't have that.These are some of the useful resources that are available to people to learn more.
James Beck 57:38
Thank you very much, Dr. Diaz. That was a fantastic presentation. You really covered a tremendous amount of material here. For someone who says they're not an expert, I think you certainly are pretty close to doing justice to this subject area.
A lot of questions have come in, but one of the ones I just want to start off with at the top, because you mentioned this, just for clarity for our listeners: you mentioned sometimes traditional medicine. I think you're referring to medicine you practice, American-style medicine, Western medicine, versus the culturally based, what some people often think is traditional medicine too. Is that correct understanding?
Dr. Natalie Diaz 58:18
Yeah, yeah. I apologize because that term is used for both, right? Conventional medicine, I guess, is a better term for it. It's the convention that we have in our medical treatment in this country, which is through a doctor, prescriptions, most of them. That's what we call conventional medicine, sometimes referred to as traditional medicine.
But that term, as you mentioned, is also used for cultural tradition, right? A lot of countries outside of the U.S., in Asia and Africa and even parts of Europe, there are supplements and foods and herbs that have been used and passed down for generations as useful for treatment of ailments. Yes, I talk about culturally traditional therapies as opposed to more conventional medical treatment.
James Beck 59:11
Got it. Thank you very much. As I mentioned, lots of questions coming in. I know we're almost at the top of the hour, but I think you said you could stay for a little while longer, so I appreciate that. For those of you who may have to sign off, this is recorded, so you can always come back and catch the Q&A afterwards as part of that.
If you've been listening to this, and there were a number of people who didn't really know what complementary therapies are and now their interest has been piqued, how do they go about trying to find someone to talk with about complementary therapies? Should they go to their doctor first? Is there a complementary therapy doctor that they should consider? Do you find those who specialize in PD? What would be the first step you would recommend for someone who's listened to this and says, I'm willing to see if some of this may help as part of the overall care for my Parkinson's?
Dr. Natalie Diaz 1:00:01
Absolutely. I don't tell people to go out there and reinvent the wheel and go out and get themselves a whole new set of doctors to treat their condition. I would always first start, if you have a good relationship with your doctor, that's always the first place to start: talk to your doctor, right? As you saw, I highlighted some of the problems that can come with these: toxicities, potential side effects, interaction with medications. It is always very important for your doctors to know that because they're writing your prescriptions. If you're taking something that's counteracting with a medicine that they're giving you, and there's a complication and they don't know what you're taking, it's very important to know that.
I always start my day when I'm meeting patients for the first time or even when I'm seeing them in follow-up, I always tell them, okay, what are the medications you're taking? What are the changes in your medications? Are there any new supplements or supplements that you're thinking of talking about? Knowing that this is a growing trend, I think you're going to see more and more doctors asking those. When you check in, they're always asking you to put down everything that you take because you may not know if it's important or not, but it could be important. Always start first with the physicians that you already have and try to have that conversation.
Of course, there are physicians with all levels of knowledge and comfort with these, right? Sometimes you will come across physicians — traditionally, we're not trained in this — you will come across physicians who say, I wouldn't take that, or, I know nothing about it. Then you're left with, well, where do I go? There are some useful resources for you to do your research that I mentioned. There's fellowship training, so there are institutes of integrative medicine where doctors can get fellowship training, and some of those have listings of integrative medicine doctors. Most of them are primary care doctors, but there are specialists as well who take that a little bit further and try to bring these two worlds together.
First start with your own doctor. Then start with some of these national organizations of integrative medicine, the NIH, different things that give you more information and things for you to learn yourself, but also to help identify. Also ask your doctor. I have colleagues that I work with who, in certain things, are much more well-versed in things like this. I will dole out to other doctors. I have emergency room doctors and internists who feel really comfortable with CBD products, with Mucuna, all that. I am by far not an expert in these. I will dole out and say, I really can't tell you too much, but I do have colleagues who work in that. Let me give you a referral or let me give you their contact information.
James Beck 1:02:57
Okay. That's fantastic. If your doctor is, as one listener said, dismissive of this approach, is it worth going out on your own, as you said, trying to establish these relationships? But even then, you should always be telling them what you're taking, just so that they know.
Dr. Natalie Diaz 1:03:17
Absolutely. You don't necessarily, sometimes you have a good relationship with your doctor on other terms, and you think that they're a wonderful doctor, but maybe that doctor just doesn't feel comfortable or doesn't know too much. It doesn't necessarily mean you have to go changing your doctor. But you have to be in control of your own ship. We're there to help guide you on the road, but ultimately, you have to be aware that there can be problems with this, and so your medical team needs to know everything you're on. It's okay if they don't approve. It's okay if they don't, but I need to tell you what I'm on so that you're aware.
Then a discussion. If they don't feel comfortable or they don't know other physicians or other providers, then like I said, there are accessible resources through some of the national organizations and some of the government websites that have listings of people who do have more training in that.
James Beck 1:04:14
Fantastic. I've gone through this process, and I want to take some of these complementary approaches, especially with the biologically based ones. Supplements and herbs and whatnot, things you would probably ingest. How long would you expect to see some effects? When would you say, this isn't really working out? Is it just a matter of people will know it's not worth the effort? Because it does sound like this is a little bit really on the cutting edge of things where, for those early adopters of technology, things don't work quite as you expect and you have to do a lot more fiddling. It's not going to be turnkey, and so it requires a lot more effort on the behalf of the patient or the person with Parkinson's who's doing this.
What do you advise somebody who says, I'm going to try this, and you say, well, yeah, you should try a couple weeks or a couple months? What do you say?
Dr. Natalie Diaz 1:05:08
Yeah, I mean, it's similar to pharmaceuticals, right? People, if they want to try them, you try them, right? You give it a little bit of time. Side effects, most of the time you're going to feel first, right? Those are things that you always have to keep in the back of your mind. Know what you're taking. What are the potential risks? Like I said, always vet out yourself or definitely with your physician: am I on medications that are going to interact with something that I want to try? That's the first and foremost thing to do. Is this appropriate for me to try?
Then if I'm going to try it, as I mentioned on one of my slides, do one thing at a time. It's the same thing with pharmaceuticals. Like I said, if you throw too much into your recipe and you don't feel well or you have some toxicity, we don't know. You might have lost out on something potentially good because we aren't able to sort out which one was the culprit, right? If you're going to change something, always change one thing at a time. I have patients who dabble in bacopa, dabble in CBD, dabble in these, and we have this discussion. I think maybe you need a little bit more levodopa. I want to try this first. Okay, well, let's just do one.
Let's do one, and we talk about the pros and cons of both. If we decide we're going to do the complementary therapy adjustment first, we do that, and we'll leave the conventional medications the same because we want to see how this works. Ideally, you want to give it some time. If you looked at some of these processes that the complementary therapies are trying to get at, these inflammation, oxidative stress, changes in your stress level, pain, all that, it's not going to be immediate. You do have to stick with them as long as you're feeling okay. I usually say give them a couple weeks, a couple of months.
If financially it's feasible, some of these are not cheap, right? You have to take that into account too when you're balancing this. I definitely don't recommend that people waste a fortune or their savings on these, but if they're financially feasible and people really want to give them a try, like medicines, you have to really give them a few weeks, maybe even a few months, to see if you notice an effect.
Some of these effects, again, we don't know. That's the problem. We don't know without them being properly studied. These studies that we do are very short-lived. There's no way that we follow these supplements for months and years. Could it have an effect of something that you're taking now and you take it for a couple of years, then maybe we look back then and say, well, it did make a difference, right? I usually say stick with it for a while. If you're going to give it a try, stick with it, maybe three months, maybe six months. But it becomes a problem if we need to adjust conventional medicines, right? Again, we say give it a try, but we may have to do something in the interim.
James Beck 1:08:03
Yeah, I do know that we surveyed the Parkinson's community a couple years ago, asking their experience with medical cannabis. What was interesting is we found a lot of people tried it, but a lot of people also stopped using it because they, for various reasons, didn't find it as effective as they had hoped.
Thinking about why people try this, you had that nice slide which showed different things people were looking at, more holistic, big-picture stuff. But do you find — and this is a question from one of our listeners, Wayne — do you see specific symptoms as a trigger for people to try complementary medicine, particularly pain? Is it one of those more intractable issues with Parkinson's?
Dr. Natalie Diaz 1:08:43
Yeah, absolutely. As I mentioned, holistic and looking, but a lot of it is over time people have these things, and whether part of it is aging and part of it is Parkinson's disease, there are symptoms that just don't get covered with a lot of the therapies that we have available, both Parkinson's treatment as well as pain management. Sleep issues are so prevalent as we get older. Constipation issues, right? When our therapies aren't there or we've tried them and they've given people side effects or we've reached a ceiling, that's where a lot of people turn to some of these.
I do, like I mentioned, the mind and body practices, I think that's probably the one area that I promote the most. I'm actually a consumer of that. I find it very useful. I have a bunch of free apps on my phone to help with mindfulness meditation. I do yoga, dabbled in tai chi and qigong. Those are the areas where I think really help people with pain, with stress reduction, can help with sleep, and can sometimes help people focus a little bit more.
But yeah, I think it's those symptoms like that: pain, sleep, stress, focus, mental fog. These are the things that sometimes we don't get at with our conventional medicines that people turn to that.
James Beck 1:10:07
Yeah, absolutely. I'd just alert our listeners that every Monday we have Mindfulness Mondays hosted...
Dr. Natalie Diaz 1:10:14
Wonderful.
James Beck 1:10:14
Yeah, it's a form of — thank you for saying so. We're way past our time. I appreciate it, but just if I give you some shotgun questions real quick, rapid-fire, if I may. We talked here, we're talking about Parkinson's disease, but people have atypical Parkinson's. This applies to them as well, right?
Dr. Natalie Diaz 1:10:33
Yeah, these are across the board. These are not specific for Parkinson's. The ones that have been studied have been looking, trying to single out just Parkinson's disease. As far as we know, a lot of these studies don't go through some of the same criteria that we do for pharmaceutical trials, where we really try to isolate out real Parkinson's and not some of these other Parkinson's conditions. We don't know if those are in there. But these are general therapies, right? They really are therapies that not only Parkinson's patients, atypical Parkinson's patients, but the general community also can try.
James Beck 1:11:10
Fantastic. Another question has come in about functional medicine. I'm not familiar with that term. Is that different than integrative medicine or complementary medicine? Are you familiar with that term?
Dr. Natalie Diaz 1:11:21
I'm not sure. I'm wondering if they're talking about functional foods. When we talk about things like Mucuna and actual foodstuffs, protein and things like that, these are actual foods and not supplements that people take. I don't know if the listener was referring to that, functional foods rather than functional medicine.
James Beck 1:11:42
Okay. One last one, if I may. Reflexology. You mentioned that in one of your slides. That question has come in about what is it? I'm not familiar with it either. What is reflexology briefly?
Dr. Natalie Diaz 1:11:53
Yeah, again, it's one of those manipulative practices, right, where you actually have a practitioner. There are certain areas of the body, and this again is an ancient practice. There are books that date back to I don't know when, where touching and pressing, similar to acupuncture but not acupuncture, certain areas of the body seem to help, at least by ancient texts, release digestion, improve digestion, help sleep, all those sort of things. The pressure areas release some of these body flow of energies and have traditionally, in ancient texts, helped.
I don't know that there's a lot of evidence to them. If you think about them, they're similar to a lot of these mind-body practices and manipulative practices. I'm sure they help with pain. They help with stress relief. Anytime you have one human touching another human in areas where you've got stress and discomfort, it can be useful. If people want to try it and they're going to places that are clean and have a reputation, I have no qualms about it. I just don't know that there's a lot of literature on it.
James Beck 1:13:06
Yeah, understood. Dr. Natalie Diaz, thank you very much for your time today. Wonderful presentation. I also want to turn this over and say thanks to our community. I really appreciate you taking the time to tune in and to listen to our presentation today. This closes on two of six presentations for 2022. Look forward to April 6, Parkinson's Awareness Month, about whether we can put the brakes on progression for Parkinson's disease with Dr. Lazarus.
We have discussed a lot of different resources and material. Dr. Diaz mentioned some in her slides. Again, those slides are available for download, so you can take a look at that. Also, have our own Aware in Care kit, something for people to keep in mind as they consider visits to the hospital. We have an extensive library of resources and our PD Health @ Home series, where you can find out about our Mindful Mondays. Then we also have some other digital materials, like this podcast, Substantial Matters, which is really fantastic for those who like to listen to it. For those who don't know what a podcast is, it's basically the radio on the internet. You can download and listen to it when you want to.
We have professional education, so for those allied health professionals who joined us, we've just launched CME programs. Certainly take a look at that for those of you interested in it, particularly in genetics and Parkinson's. Speaking of which, PD GENEration is our large study that we're looking to test as many people as we can to understand whether they have a genetic basis to their disease. The hope here is that we'll have enough people who are identified and be willing when the time comes, which we think will be soon, where people can participate in clinical trials that are targeting people with specific genetic forms of Parkinson's disease.
That said, we are here for you: Parkinson.org, 24/7, and during business hours, we have our Helpline, 1-800-4PD-INFO. If people are busy, they return calls, so feel free to leave a message. They will call you back. Also, Helpline@Parkinson.org. Last, before we go and fade to black, when this Zoom call is over, a window will open up from your browser. It's an opportunity for you to give feedback to the Foundation, feedback to Dr. Diaz. Let us know how we did. Give us feedback. We take it, we listen to it, and incorporate it to always make certain that we're bringing you the best material that's possible.
With that, I will bid everyone adieu and look forward to talking to you again in April, and hopefully the spring will be warm for everybody. Thanks again and until next time.
