Dan Keller 0:03

Welcome to this episode of Substantial Matters: Life and Science of Parkinson's. I'm your host, Dan Keller. At the Parkinson's Foundation, we want all people with Parkinson's and their families to get the care and support they need. Better care starts with better research and leads to better lives. In this podcast series, we highlight the fruits of that research, the treatments and techniques that can help you live a better life now, as well as research that can bring a better tomorrow.

After a diagnosis of Parkinson's disease, people often start with levodopa to manage symptoms, increasing daily doses as needed, and adding other drugs to further control symptoms, but at some point, if drug regimens are not sufficient or adverse effects become troubling, it may be time to explore more advanced treatment options, like deep brain stimulation, or DBS. When considering DBS, a person needs to become educated about it, including how the procedure is done, what to expect in terms of recovery, and what benefits DBS can provide.

I spoke with two experts in DBS, each in their own way. Dr. Arjun Tarakod is the director of the Deep Brain Stimulation Program at Baylor College of Medicine in Houston. Samantha Helton, a patient of Dr. Tarakod's, is a person with young-onset Parkinson's who has undergone a DBS procedure and can give a firsthand account of it from a patient's perspective. Samantha, when did you start to feel like your medications weren't working the way they used to, and what was changing?

Samantha Helton 2:02

Well, my issue was I was just taking so many medications and having the side effects from those medications, and I probably noticed that a few years ago. It just seemed like every time I would go in, we'd have to change something, maybe increase medications. I wasn't getting the benefits of the medication as much as I had when I first started.

Dan Keller 2:24

And Dr. Tarakod, what are the types of signs that tell you that it might be time to start talking about more advanced treatment options, something like deep brain stimulation?

Dr. Arjun Tarakod 2:35

I'd say there are two common reasons, and then a few less common reasons that we might start thinking about deep brain stimulation surgery. I think the most common one that people run into is what we call motor fluctuations and dyskinesia. So, motor fluctuations are when the medications don't last as long, or you're noticing more dramatic shifts between when the medications are working and not working. This can lead to taking multiple doses a day.

And then the dyskinesias are symptoms that come as a result of using the medication. So, these are the typically twisting, turning, involuntary movements that you can get, usually when the medication dose is running a little bit high, but sometimes people can also notice these as the medication wears off.

Outside of that, the other common reason we might look at deep brain stimulation is for tremor that doesn't respond to medication, so that's one symptom that we say we can treat better with deep brain stimulation than we can with medication. Everything else is somewhat comparable treatment, maybe a little bit more persistent or reliable, but tremor is that one symptom that we can do a little bit better with the stimulation than with medication. Less frequent reasons would be other side effects from medications, or people wanting to reduce the amount of medication that they take. Those can still factor in, but those are usually not the main reason that we would look at the surgery.

Dan Keller 4:00

Since deep brain stimulation somewhat simulates or takes the place of levodopa medication, you had brought up dyskinesias with levodopa. Does DBS also risk having dyskinesias or not?

Dr. Arjun Tarakod 4:17

So you can get dyskinesias induced by stimulation. There are ways around this, and there are a couple of different targets that we use when we're trying to decide with someone with Parkinson's, if they're going to get DBS, what would be the best target for them. That's usually a discussion we have both with the patient and then with the neurosurgeon prior to the surgery. I do want to make it clear, though, that even if you do get dyskinesias with stimulation, there's usually ways you can adjust the stimulator to get rid of that.

Dan Keller 4:48

Right. Samantha, before you decided on getting DBS, what did you know about it, and what was your understanding of what symptoms it would take care of?

Samantha Helton 5:01

I didn't know too much about it, but I did, you know, obviously do a little research before. My main concern was the tremor. I had a really bad tremor in my right hand, and then it affected the way I did a lot of things. So that's what I watched videos on, and I saw how it helped people, the dramatic difference between when they had the stimulation on and when they had the simulation off, and that's when I started to really consider DBS, and Dr. Tarakod helped me with that.

Dan Keller 5:30

What expectations do you most often need to clarify what DBS can do when you're talking to a patient? So, what is the symptom control that they can expect, which ones may be ameliorated and which ones won't it touch?

Dr. Arjun Tarakod 5:46

Okay, so we usually will break down what DBS can help with into motor symptoms. So when we think of what dopamine does or what levodopa does, it has potential to treat almost all, if not all, symptoms of Parkinson's—maybe not every symptom in every patient, but we do have some people where their cognition feels like it does better with levodopa, or their mood does better with levodopa, but those are what we call non-motor symptoms. When we think of motor symptoms, this primarily centers around stiffness, slowness, tremor, so those are the symptoms that we would say reliably respond to deep brain stimulation. Dyskinesia, I would add on there too, if you have it as another one that can reliably respond to deep brain stimulation.

So it's good at treating those motor symptoms, as I mentioned earlier. Tremor is that one symptom that it probably does better than any of the medications in treating. With the other symptoms it's really just about prolonging the good periods and reducing the bad periods, so when we go back to those motor fluctuations or those ups and downs, having more periods where you feel like the medication or that feeling you get when the medication is on and working lasts a little bit longer with deep brain stimulation, and then the period where you notice that the meds aren't working, where you feel stiffer or slower, that tends to reduce.

But it is always important to highlight the limitations with deep brain stimulation surgery. So, aside from non-motor symptoms—it doesn't help with thinking or memory, it doesn't help with fatigue, doesn't really help with mood directly—it also isn't going to change the progression of Parkinson's, so it doesn't slow or stop the progression of symptoms. It just treats it kind of like how the levodopa treats symptoms.

And then there are even some motor symptoms which don't reliably improve with deep brain stimulation, and these would be things like walking or balance. That one always gets tricky, because you definitely do get people who walk better post-surgery. It's just not as reliable. I usually will try to break it down when I explain to patients that there are a lot of different things that factor into your walking, so if it's a question of stiffness or slowness, that ease of movement can improve with deep brain stimulation. If you have dyskinesias that are throwing you off balance, those can improve with deep brain stimulation, but that sense of balance, or what we call postural instability, or that loss of postural reflexes that we see in Parkinson's, that typically doesn't improve with the surgery. So, there are aspects of gait and balance that don't really tend to do better with the surgery.

Dan Keller 8:23

Are most of the risks associated with the surgery, like bleeding or infection, or are there other risks from the surgery, or from the actual DBS as it's operating?

Dr. Arjun Tarakod 8:36

So, I would say the main significant risks with deep brain stimulation surgery are going to be right around the time of the surgery itself, and these do go into things like infection or bleeding. Anytime you have a surgical procedure, there are going to be some known associated risks with that. Once everything is healed up and closed up, I would say the complication rate is exceedingly low. Infection is still a possibility, as it is anytime you have a foreign object implanted into the body—there is a slight increased risk of infection with those, but it doesn't tend to be a significant issue for most people.

The risks or side effects you can get with deep brain stimulation as a consequence of the stimulation itself are typically adjustable with adjusting the stimulator. So, the other frequently seen side effects we can see with deep brain stimulation would be speech changes or balance changes, but those can typically be reduced or eliminated when you adjust how you're stimulating. A lot of times, if we run into issues we might have... it's almost like a whack-a-mole, where we can make an adjustment that helps with the speech, but then the tremor comes out a little bit more. We might trade a side effect for symptom control, and those are some situations where we might see a person might prefer to stay with a mild side effect if it gives them a fair amount of symptom control. Samantha, can you tell me a bit about the testing that you had to go through before the surgery?

Samantha Helton 10:10

Yes, so the surgery is in two parts, but before you get to that point, you have to do a neuropsych evaluation, and this is probably very intimidating for some people, but I don't want people to be intimidated by it or not consider it because of this reason. But basically, it's to check your cognitive function, so the test is like memorizing—they'll read a, let's say, a story to you, you have to repeat what you can remember back, some memorization, logical thinking, that type of thing.

So, once I got through that, it was like a four-hour test. They do give you a break. Did that, they did put me before the board and get all that approved. And once that was done, it was just, you know, the normal medical MRI, CT, that type of test. You know, your typical blood work for surgery. But the neuropsych, I thought, was nothing that I was expecting until, you know, I was notified of it, but it's something that I was not concerned about because I'm a younger person, so it was definitely... I could see how people were very, very intimidated by it.

Dan Keller 11:13

Do you have any advice for other people about not feeling discouraged if they don't pass the neuropsych test, because of maybe declining cognition, just getting older?

Samantha Helton 11:25

I don't know whether you're not passing, so that might be some question for Dr. Tarakod, I'm not sure on that aspect of it.

Dr. Arjun Tarakod 11:32

I can chime in there, if that's okay.

Dan Keller 11:35

Yeah, sure.

Dr. Arjun Tarakod 11:37

So I think Ms. Helton brought up a good point with the "pass" part of it, and I always tell people when they're doing these tests that it's not really testing you to pass or fail. It's trying to get a sense of how your cognition is functioning versus where it would have been functioning 10, 20 years ago or before you had symptoms of Parkinson's. Everyone is tested to the point that they can't get questions right because we need to see limits on this, so everyone finishes that test feeling like they might have failed something, but that's pretty typical.

The reason that we do the test is we're trying to assess the risk of doing a brain surgery, and I also want to be clear that not all places do neuropsychological testing before the surgery. It's something that I definitely advocate for, but I know it's not standard practice everywhere. But the reason that we do it is if we do see changes with thinking and memory, and this looks like it's a significant change from what someone might have been functioning at before they had Parkinson's, then that risk of a decline of cognition with a brain surgery goes up more substantially. So it's really just to make sure that people are safe to do the surgery, and they don't wind up... maybe their tremor gets better, but then their thinking and memory is a lot worse, and their quality of life really doesn't improve with that. So we just want to make sure that anyone who we're sending to surgery is safe to do the surgery.

Dan Keller 13:06

Is part of the evaluation before offering DBS to make sure the candidate has a realistic expectation? And would you say that a satisfactory outcome—what someone considers satisfactory—really depends on their expectations going in?

Dr. Arjun Tarakod 13:24

I think that's very true. We do typically go through the expectations that people have with the surgery, and then we kind of correct it with what we expect could get better realistically with the surgery. That's another part of that pre-DBS evaluation that we typically do with patients.

That being said, a lot of people have in their mind what they want to get better, and even when we tell them what DBS can and can't do—I know gait is a big one for this, so everyone gets told through multiple visits what they can and can't expect from the surgery—but it is important to have those realistic expectations with it, because it's not the solution to all problems. Sometimes when we don't move forward with the surgery, it's not necessarily that someone isn't a good candidate for the surgery, or they're at a high risk for the surgery, it's just their goals for what they want the surgery to do is different than what the surgery is really going to be able to do.

Dan Keller 14:22

Besides the eligibility criteria we've already discussed, are there other criteria or evaluations that might surprise people?

Dr. Arjun Tarakod 14:32

I think within the neuropsychological testing—again, it's not something that all places do, but many places do incorporate it—it's not just for cognitive testing. It also looks at mental health. It's important that people have a sort of stable base and support structure to fall back on when they're going through something as major as the surgery. It's not a "you do it once and you're done" type of procedure. There's a few months of adjusting the stimulator and multiple visits, trying to get things dialed in the way that we want.

Part of that screening is looking at mood symptoms. Part of it is looking at what kind of support structure a person has. This can sometimes be an issue if someone lives alone and doesn't really have people who could either take them to appointments or help them if they're a little bit—I don't want to say incapacitated, but maybe having a little bit more trouble during the recovery process post-surgery. It is important to have people around to be able to help in those situations.

Dan Keller 15:35

With three FDA-approved DBS systems on the market, can you highlight any differences between what they offer and how a patient would decide among them?

Dr. Arjun Tarakod 15:48

I preface this that all three systems I think function well, and while at our institution we do use all three, I think the most important thing is with the neurologist who you're working with, or the neurosurgeon that you're working with, making sure that they're comfortable with a particular system, because you don't want someone either implanting or programming something that they just aren't familiar with. So, I think the most important thing is making sure that the neurologist, or whoever's going to be managing the stimulator, is familiar and comfortable with the system.

If you do have that option where they're using multiple systems, each one has its own sort of minor differences. I would say there's two main differences with programming strategies that are utilized to different degrees in different systems. So, one system uses something called adaptive DBS, which is the ability to adjust settings based off of recordings from the brain—that has its benefits and its limitations. Another system uses more image integration and a little bit more control of how you stimulate around the electrodes, so maybe a little bit more customization in the location of stimulation without that ability to adapt over time. And then one of the systems also has an ability for remote programming, so for some people who might live far away from the doctor who's managing the stimulator, that ability to adjust the stimulator without needing to drive into the clinic might be of benefit.

Dan Keller 17:31

Samantha, let's talk a little bit about your history. After you got the DBS, what was it like immediately after the surgery and the ensuing near-term period, and how long was recovery, and did you notice anything right away?

Samantha Helton 17:49

The first surgery was the brain surgery, and then you wait about two weeks, and then you have the device implant. Actually, for my recovery, I felt like the device that was implanted... I felt like that was a little harder for me to deal with than the actual brain surgery, other than the fact that, you know, being a female, couldn't wash my hair, all that kind of thing for a couple days, you know.

As far as the recovery process, it was pretty good for me, and then as far as improvement, I mean, I did... obviously, they don't turn it on, you have to wait a couple of times to go turn it on. You go to the office, you have visits once a month for about six months, where they dial it in, pretty much, in stimulation. I had to go back in for a second brain surgery just because we wanted to move the device after... kind of narrow down the target a little better, as far as dialing in, because some of my symptoms, they were improving, but my settings were so high for my stimulation that we felt like there was not a lot of room, necessarily, if I had to increase it later on for improvement.

I did see improvement, obviously. The first appointment I did have improvement, it was just a higher setting than what we would like to see, but after the second one, pretty much immediate, it's night and day, and my quality of life is so much better because of that.

Dan Keller 19:12

So, what do you think is the time period for you between the initial surgery and feeling comfortable, and you're kind of on a steady path?

Samantha Helton 19:25

As far as the surgery recovery, I would say about a month, because you've got the first one, and you want to stay out probably for two weeks for that, and then in two weeks, you go in, you have the device implanted, and then I would say after that, you know, you're on that six-month program where they're going to dial you in. I would say two weeks to a month after surgery to actually feel like back to yourself.

Dan Keller 19:51

Dr. Tarakod, is this sort of a typical course for someone who gets DBS?

Dr. Arjun Tarakod 19:53

Yeah, I would say the recovery is usually pretty quick. To expand a little bit on what Ms. Helton said, at Baylor, we do this as a staged procedure, so we do the brain surgery, and then two weeks later implant the battery, the pulse generator. There are some places where they do both of those procedures in the same surgery. The reason that we, in a lot of places, stage it is to reduce the amount of time that someone's under anesthesia for a given surgery, and that can help people come out of anesthesia a little bit better and can help with their recovery a little bit more, but it can be done either way.

Usually, we tell people it's good to take it easy after the surgery, but there aren't any major restrictions. So, we do have people who will go back to work fairly quick after they get the surgery done, if they're working, but we usually tell them you can use brain surgery as a reasonable excuse to take a week off—that's what I'd say we typically recommend, is at least take a week off. But there's no real rehab associated with it.

And then to maybe explain a little bit, when people see the results of the stimulation itself, it's pretty typical to see results fairly quickly, but those often fade as your brain is getting adjusted to the stimulation. We also can't crank up the settings too high right away as people are getting used to it, so we have these frequent visits over the course of a couple months just to get people used to the stimulation at a steady level. So I would say four to six months is probably typical for when we get people to a relatively steady or good functioning state. We still make tweaks after that, and I would say as time goes on, the longer someone has stimulation, the less we wind up needing to adjust it, but maybe four to six months is a reasonable expectation to get things dialed in.

Dan Keller 21:46

Are there any precautions that patients need to know about once they have fully gone through the process, have the electrodes, have the stimulator, and they're well on their way and out the door? I mean, things like getting brain imaging, MRI, or any of that, do they need to alert people about that?

Dr. Arjun Tarakod 22:04

Yes, in certain situations. So, anytime there's a very strong magnet or a very high electrical current involved, those are things that you need to be a little bit careful with. X-rays and other types of medical equipment aren't really going to be much of an issue, so if you needed to get an MRI, you can get them done. All the devices now are MRI compatible. You just need to do it under certain settings, so the radiologist should always be aware that you have the stimulator. Sometimes they need to use less strong magnets, or you might need to be in the scanner a little bit longer, just to avoid things that might heat up the device a little too much, but it is still possible to get all of that imaging done. The devices all have an MRI mode, or you just turn them off when you get those types of studies done.

For something like a CT scan or an X-ray, it doesn't really matter, so you can leave the devices on for those types of tests. The devices can also interfere with things like an EKG or an EEG, if you're getting one of those. So, a lot of times it's handy to take your controller with you if you have a stimulator and you're going to a doctor's office, just in the event that they need to do one of these other procedures, so that you can turn it off while they do their studies, just to avoid the interference.

Dan Keller 23:26

Samantha, looking back, what's the one or two things you'd want somebody considering DBS to understand?

Samantha Helton 23:34

Well, one, don't be scared when you hear brain surgery—you think that's very scary. I know I was kind of like that. Just don't be scared, trust your doctors. And the second thing I would say is make sure you have a conversation too with your doctors about, like you said, what the expectations are. I kind of knew what mine were. My main thing was, like I said, the tremor—it's completely under control at this point with some less medication, which is what we were going for in my case. The only thing is, you know, I kind of didn't know if I was going to have to go in for a second brain surgery, and then I did do that again, so I would say that was maybe something I didn't know was going to happen necessarily. So I would just say just have that discussion with all your medical staff.

Dan Keller 24:21

Dr. Tarakod, what would be your nutshell message to someone considering getting DBS?

Dr. Arjun Tarakod 24:26

I would say you have to really just look at if you want the results that the surgery can provide for you, because no one goes in saying they want to do brain surgery, and I understand that. I see a lot of people who want the results, but they want to put it off because they're scared of the surgery, and I think that's completely understandable. But when you put it off, the longer you wait... kind of a known thing, there's no age limit typically with the surgery, but as you get older you are more likely to have other health issues.

So I tell a lot of patients, let's say in their 60s or 70s: you don't have to do the surgery now, but doing the surgery when you're in your 60s or 70s is going to be easier to recover from than doing the surgery in your 80s. So it is one of those things where no one wants to do the surgery, but they want the results, so it's important to just be educated about what DBS can do, and if those results look like things that you would want to pursue, knowing that Parkinson's does change over time. I would say the most common thing I hear from patients is they wish they had done it sooner. When I think of the patients who get the surgery, they typically say that they wish they hadn't waited as long as they had to move forward with it.

Dan Keller 25:45

And for either of you, have we missed anything important to add or interesting that you want to say?

Dr. Arjun Tarakod 25:52

Maybe just... this might be a little bit of a question for some people listening with Ms. Helton and doing the surgery twice. In her case, we did do a revision. That's not a typical thing that we do. I would say maybe 1% of the time, or somewhere around there, we might look at a revision. So certainly do not go into the surgery expecting it. It's also not something that I usually will discuss with people too much when we first start talking about deep brain stimulations, just because I don't really expect it to be an outcome.

But in some cases, the wire is maybe a little bit off of the ideal target, and this is a question of maybe a millimeter or two in a direction outside of where we wanted to go. We still try using the stimulator first, as we did in her case, to see if we could get things under good control, and as she mentioned, we did get the tremor under good control, but we were using pretty high settings with that. So that brought up the question down the line: if we ever needed to make adjustments, we really didn't have too much room for an adjustment just because we were using such high settings.

And being that she was on the younger side, we expected her to do well with the surgery—she recovered well from the surgery. The idea of doing that revision surgery relatively early on did come up, just to try to get the wire in a better spot so that we didn't need to use quite as much stimulation to get that effect. And in her case, that wound up, I think, being the right decision.

Dan Keller 27:21

Very good, I really appreciate all the time and the information. It's a fairly voluminous discussion, but I think it really puts it into good perspective for anyone considering getting DBS. So, thanks a lot.

Dr. Arjun Tarakod 27:35

Happy to help.

Dan Keller 27:36

All right. Take care. Bye.

For more on DBS, search our website at parkinson.org for deep brain stimulation. There you'll find a fact sheet called Considering Deep Brain Stimulation, and a blog post featuring another person with PD who chose to get surgery. We also have a free book called Advanced Treatment Options, which talks about DBS and other options.

As always, our PD information specialist can answer questions and provide information in English or Spanish about this topic or anything else having to do with Parkinson's. You can reach them at 1-800-4PD-INFO. If you'd like to leave feedback on this episode, or to let us know what other topics you'd like us to cover, visit parkinson.org/feedback. Be sure to subscribe and rate us on Apple Podcasts, or wherever you get your podcasts.

We want to thank this episode's podcast sponsor, Boston Scientific, for supporting our mission at the Parkinson's Foundation. Our mission is to help every person diagnosed with Parkinson's live the best possible life today. To that end, we'll be bringing you a new episode in this podcast series every month. Till then, for more information and resources, visit parkinson.org or call our toll-free helpline at 1-800-4PD-INFO, that's 1-800-473-4636. Thank you for listening.

Dan Keller 29:27

Thank you.

Samantha currently resides in Montgomery County, Texas, with her high school sweetheart and their daughter. She has worked in the real estate industry for the last 23 years. She has lived with Parkinson's for many years but doesn’t let it stop her from living life. 

Dr. Arjun Tarakad serves as associate professor and director of the deep brain stimulation program at the Parkinson’s Disease Center and Movement Disorders Clinic at Baylor College of Medicine in Houston, Texas. He completed his neurology residency and movement disorder fellowship training at Baylor College of Medicine, his medical school training at UT Health, and his undergraduate training at Rice University. His clinical interests include Parkinson’s disease, essential tremor, and Tourette syndrome, with an emphasis on deep brain stimulation in the management of these conditions. His research interests focus on clinical therapeutics, with particular emphasis on disease modifying treatments. 

Dr. James Beck 00:00:01
Hello everyone, and welcome to the Parkinson's Foundation Expert Briefings. I'm Dr. James Beck, Chief Scientific Officer at the Foundation, and it's a pleasure to have you with us today. In today's briefing, we'll explore functional medicine and non-drug options, such as massage, acupuncture, red light therapy, and CBD. All this is done to help relieve symptoms and enhance daily well-being in people with Parkinson's. But before we get started, let's do what we always do, which is to get a sense of who is there in our audience today. So we're going to launch a poll, and if you're joining on Facebook Live, feel free to go into the comment section and tell us a little bit about you. Tell us what describes your connection to Parkinson's: a person with PD, spouse, partner, a parent. What is your relationship? Tell us, and then I'll get a sense of who we are, and we can let our speaker know as well and get a sense of who we're talking to today.

Okay, probably a fair number of people are still joining and filling out this poll as we come in. We always have a strong presence for those living with Parkinson's disease and their care partners. Let's see if that's going to be the case today.

All right. Let's take a look at the results of that poll and see where we stand.

Ah, of course. As I suspected, a lot of people with Parkinson's and their care partners here today. That's great. Some children of those, other family members and health professionals, welcome each of you. I think today will be a really interesting discussion that we're going to have as we get going. Thank you, everyone, for sharing your connection to Parkinson's disease.

Before we begin our formal briefing, I'd like to just, as I always do, take a moment to introduce the Parkinson's Foundation for those of you who are not familiar with us. We're a nonprofit organization dedicated to improving the lives of those living with Parkinson's by enhancing care and advancing research.

Our efforts are deeply rooted in collaboration with the Parkinson's community, ensuring that everything we do aligns with the needs and the priorities of you, those living with Parkinson's. Today's program is an example of how we're working with you to meet those goals. One of our key initiatives is PD GENEration, which offers free genetic testing and counseling to people with Parkinson's. By participating, you can learn about your genetic connection to Parkinson's and contribute to research that hopefully will drive new treatments and one day a cure for those living with Parkinson's. We encourage you to share this opportunity with your community if you've already participated. Together, as we always say, we can make a difference.

For those of you who are furiously trying to take notes and transcribe what's going to be talked about today, just remember we're going to record our session today. For your convenience, we'll have that recording available shortly after our presentation. It takes about a week, and then we'll email you a link to the recording, as well as other resources related to today's topic.

Now, as we begin our Expert Briefing, I'm pleased to introduce Dr. Britt Stone. Dr. Stone is an assistant clinical professor of neurology at Vanderbilt University Medical Center in the division of movement disorders, and she is also at a Parkinson's Foundation Center of Excellence. Dr. Stone earned her medical degree at Meharry Medical College and completed her neurology residency at the University of Pennsylvania, followed by a movement disorder fellowship at NYU Langone in New York City. She also trained in integrative medicine through the Andrew Weil Center at the University of Arizona, and her work focuses on integrative and holistic care for people living with Parkinson's disease.

Dr. Stone, thank you for your time and for joining us today.

Dr. Britt Stone 00:03:39
Thank you so much, Jim and the Parkinson's Foundation, for having me. So now, so that we have lots of time for questions, we're going to get into it. Let me share my screen. You all will hold, and we'll see if technology is on our side and everything is smooth.

Okay. Today, we're going to be talking about complementary therapies and functional medicine and Parkinson's care. We're going to highlight a few key modalities and talk about the research in those modalities, what we know and what we should be looking forward to in the future. Hopefully, this will empower you as you collaborate with your providers regarding Parkinson's disease.

I have nothing pertinent to disclose today.

Where we're going: we're going to first understand the potential benefits of non-drug therapies for managing Parkinson's disease symptoms. We're going to learn how functional medicine focuses on root causes and whole-body wellness to provide a holistic approach to Parkinson's care. We're going to gain insights into how complementary and functional medicine therapies can improve daily well-being and enhance quality of life for individuals with Parkinson's disease, and then recognize the importance of integrating personalized, non-traditional approaches with traditional treatments for a balanced management plan.

First, some definitions. What is functional medicine? When I think of functional medicine and complementary therapies and integrative medicine, which you might have also heard, these are not actually interchangeable terms. This picture of an umbrella is a perfect idea for thinking about this. Integrative medicine is kind of the umbrella under which functional medicine can live and complementary therapies. When you're thinking about integrative medicine, underneath that umbrella, in addition, is also traditional Western medicine.

All the things that your movement disorder specialist will prescribe for you, whether that's your medications, your therapies, seeing the psychiatrist, home health, all of these things are your Western medicine modalities. Then you have functional medicine, which is this idea of looking for the root cause, and we'll talk about this a little bit later and what that entails. Then there's complementary therapies, of which there are many, and we'll talk about a few of those today.

Functional medicine addresses the root cause and not just symptoms. It's looking at a whole-body system approach to medical care with an emphasis on nutrition, gut health and lifestyle factors. Think about it as if you have a pyramid. The base of this pyramid is the habits, routines and rhythms of your life that we're trying to help stabilize. As you move up the pyramid, you then have more acute therapies that you might add in. Specific things like going to an acupuncturist, getting bodywork or massage therapy, your exercise regimen that is tailored to you specifically, supplements and herbal remedies that you might take, and some other therapies we'll talk about later.

Dr. Britt Stone 00:06:58
Functional medicine also focuses on genetics and environmental exposures. Often, there will be extensive laboratory and diagnostic testing that maybe in your general Western medicine schema is not done. A lot of times, these labs may not be covered by insurance and might be out of pocket. They're looking at things like how people metabolize particular compounds. It might look at allergies, exposures to things in the environment, mold comes to mind, for example, inflammatory markers, lots of vitamin labs and things of that nature.

Functional medicine and Parkinson's: functional medicine is particularly ideal from a preventive perspective because it's identifying susceptibilities and vulnerabilities in the individual. As we know, we are not perfect, sadly, and we all have been impacted by our genetics, by our environment and by what we have experienced: traumas, our career, where we've lived. All sorts of things bring us to the moment we now arrive at. If we've had other illnesses, if we've had other incidents, functional medicine considers all of these things and is trying to then help set you up for ideally the best sort of prospective moving forward as you age. Once someone is diagnosed with Parkinson's disease, functional medicine can help with optimizing quality of life moving forward.

Under this integrative umbrella, we're now moving into what are the non-drug therapies. First, what is a drug? A drug is any medicine or substance that actually causes a physiologic effect in the body. That's very broad, so it might not just be the drug that is written on a prescription pad by your physician. When you are actually taking herbal supplements, there is this drug component to it because it is actually impacting your body.

When we're talking about the natural remedies, they aren't these things that are completely separate from drugs, but they might not be pharmaceutical. That's how we often separate them out. Then there are non-pharmacological therapies, and I think that's a more clear description when we're talking about things like acupuncture, massage, red light therapy, breath work and more.

These are all modalities that have been moving out of specific communities where they have been heralded as things that are very helpful for people's general health and well-being and for some symptom management, and they're moving into mainstream awareness now, as lots of people are incorporating this into their clinical practices. You have physicians who are now recommending this to the patients they're taking care of. You have patients who are asking their physicians, "What do you think about this?" whereas before maybe they wouldn't have done that. You also have people who are in the healthcare space in Western medicine doing these therapies for themselves as well, for their own healthcare maintenance.

Some benefits of non-drug therapies for Parkinson's disease: there is this concept of, can you get symptom relief? We're thinking about what symptoms seem to often respond to non-drug therapies. Symptoms include stiffness, pain, anxiety, sleep and mood, particularly for non-motor symptoms that might not respond as well to pharmaceuticals. The key when you're thinking about what works for you or how to individualize this approach is to actually consider what are the things that bother you the most that you're trying to get some management of.

I'd be remiss if I didn't talk about the concept of placebo. Placebo effect, which often, when you think about it, sometimes might evoke this negative connotation, but really it shouldn't. It is our brain's way, our mind's way of healing itself. This idea that when we have hope, when we are optimistic that something we are doing for our health can make us feel better, that we actually do feel better.

Dr. Britt Stone 00:11:20
When you're talking about pharmacological therapies, often the goal is that you have a therapy that is better than the placebo effect, because then you know it's not just my positive thinking that's making this thing work. If it's just positive thinking making this thing work, then I really maybe don't need to take this drug, right? But in the non-drug therapies, particularly when there's this caveat of first do no harm, whether that is physical harm or financial harm, or something that's really time-consuming and stressful for a patient, if you're not having those harmful components to these therapies, placebo effect might actually be really great.

Some spotlights on key therapies. We have massage therapy, which, when I think about what that can actually lend toward people, is hopefully relaxation. Of course, that idea of physical touch being something that actually helps to relax muscles, a calming effect. There's a therapeutic component of hands on another individual that also can be very helpful. People who have muscle spasm and cramp and muscle tightness, we know that massage therapy is helpful for this, especially at the direct time it's happening, and then there can be some long-term benefits when this is a regular practice.

There's also acupuncture, which we'll talk about each of these a little more specifically, fear not. We're talking about the concept of energy flow. In Eastern medicine, the idea of energy, or qi, that is the life force that animates a person. When that qi is stuck, stagnant or low, then you could have symptoms. That's the whole philosophy around Chinese medicine.

Acupuncture, along with a lot of herbal remedies in Chinese medicine and movement like Tai Chi and Qigong, are modalities to help move qi more effectively through the body, keep it from being stagnant and also build the qi up. There's some hope for potential motor symptom support there.

There's also red light therapy, which everyone's been talking about and it's everywhere: anti-aging for the skin and a host of other potential emerging research about potential neuroprotection for red light therapy.

Then there's also CBD in our herbal land, which is the cannabinoids. It is a compound in cannabis, which is the plant that includes both hemp and marijuana. The difference between those two, because they're practically the same plant, is the amount of THC in the plant. THC is the part that gives people the high, whereas CBD, the other compound that's often very well known, has some potential in being helpful in sleep, anxiety and pain, although there are some legal safety considerations depending on what state you live in and other medicines you might be on, and things of that nature.

A little deep dive into massage therapy. In March 2020, there was a literature review looking at 12 studies of massage therapy and its benefit on Parkinson's symptoms. Multiple types of massage induce relaxation, and when patients reported, they reported benefit in some non-motor symptoms, such as mood, fatigue, sleep disturbance and pain, which is actually not too surprising. There were some neuromuscular types of massage, the East Asian categories, shiatsu, Tui Na and Thai. Tui Na, if I remember correctly, I think is the Chinese massage. Of course, Thai is self-explanatory and might improve motor symptoms. This was also seen in a randomized controlled trial and in three case-control studies, that this particular neuromuscular type, which is kind of manipulating body parts around the joints, might improve motor symptoms.

Dr. Britt Stone 00:16:09
Acupuncture, which we mentioned earlier, is a component of traditional East Asian medicine with the fundamental principle of the life force, qi, that flows through energy meridians in the body, and disruptions of this flow can manifest in illnesses. In acupuncture, depending on what symptoms you might have, there might then be a particular protocol of these small needles that are placed along the meridians. They're usually placed, and I actually have acupuncture myself, and it's not painful. It's a little interesting.

You feel the needle, while it's quite tiny, and then the needles are placed. Then you will be lying in a very calm, quiet, often dark place for about 30 to 45 minutes. After that, those needles are removed. Sometimes you might feel a little bit of an ache or just kind of a weird, buzzy sort of feeling, different from a nervy shock from the needle. Of course, you give feedback to your acupuncturist about what you're feeling when the needles are being placed.

I've had many patients anecdotally who have gone for acupuncture for symptoms like constipation, fatigue, anxiety and sleep issues. There was a small study that showed that maybe in Parkinson's disease, there could be some improvement in pain, musculoskeletal pain in particular, and that maybe that's because of some modulation of brain regions that causes relief of pain with acupuncture.

In the Western medicine philosophy, for those of you who maybe have gone to physical therapy and have used dry needling, that is a similar concept, although often the protocol is very different. It's not that they're thinking about the energy meridians when they're placing these needles. It's more about pressure points and places that might be particularly painful. This idea that maybe because of this micro-injury effect, you flood the system with blood flow and a bunch of anti-inflammatory compounds that then can result in some improvement of pain.

Then we have red light therapy. Just to separate this out, I know since we have lots of individuals living with Parkinson's on the webinar, you might have heard of the Light-PD trial, which is a clinical study looking at actual ambient light. That's different, this general light therapy, from red light therapy. Red light therapy is a treatment using low levels of red light therapeutically. It was initially used by NASA in experimentation of plant growth in space and to help with wound healing in astronauts.

It's already been used in photodynamic therapies in dermatology to treat psoriasis, acne and skin cancer, actually activating a photosensitizer drug. Then the red light activates that and can be helpful. It's used a lot in anti-aging. You've probably seen the red light mask that everyone's using or the red light that's like a wand that people put on their face. Also, a lot of people who might go to chiropractors or other physical therapy and massage, you might see people with the red light mats that people are lying on. They say that this can help with inflammation in the body and with pain.

It's thought to work by stimulating the mitochondria in the cells that are being treated, resulting in more efficient cellular activity and new cell growth. There's a lot of potential for anti-inflammatory effects that could maybe result in some treatment benefit in the future, but there hasn't been enough studies, and the ones that have been done have been very small. Many haven't been done or conducted in humans. So the jury's still out as to if there's some benefit specifically for people living with Parkinson's disease. Red light therapy, is this a thing that could be helpful? The jury is still out.

Dr. Britt Stone 00:20:27
There are some safety considerations for skin or eye damage if it's used inappropriately, but it appears that up to this point, there hasn't been any particular dangers or hazards to this. Like most things, it will most likely require ongoing treatments. There's one theme throughout most therapies, which is the concept of maintenance. I think we know that to be true with levodopa, with exercise and with a healthy diet. Unfortunately, to live is to have to maintain, and unless there's a cure that is one and done, everything's about maintenance, including any non-pharmacological therapies that you might decide to use.

Now, one of my favorite things to talk about is CBD, which, unless you are Epidiolex, and Epidiolex is actually the pharmaceutical for CBD or cannabis. It's actually used in epilepsy for seizure disorders. You've probably heard of maybe Marinol. For people who have anorexia secondary to profound nausea or failure to thrive, people living with cancer getting chemotherapeutic agents, things of that nature, Marinol is also used. These are both pharmaceuticals that were synthetically derived around the idea of CBD, which is of course from your cannabis plant.

We talk about the fact that CBD is one of the most well-known compounds in cannabis. We talked earlier about how hemp and marijuana are the same plant, it's just the amount of THC that separates them. We do have an endocannabinoid system in our body, and that is actually why a cannabinoid that we take has impact. The idea that CB1 and CB2 receptors can act as modulators of other neurotransmitters and also might be immune-modulating, especially in the gut, is really interesting. Respectively, CB1 is more prevalent in the nervous system, central nervous system area, whereas this immune-modulating CB2 receptor is mostly in the gut.

Complementary therapies and quality of life. A systematic review and a meta-analysis in 2020 showed that dance improves motor impairments, non-motor symptoms and quality of life. A six-week program in 2013 of art therapy, which was actually clay manipulation and making pottery and building things out of clay for individuals with Parkinson's disease, showed a decrease in depression, stress and obsessive-compulsive thinking. Then a case report that acupuncture resulted in improvement in activities of daily living on the Parkinson's Disease Questionnaire-39 survey.

We definitely can see that a lot of complementary therapies, not just the ones we highlighted today, can actually improve quality of life. There's lots of different reasons for this. Often, complementary therapies are also involving, one, a community aspect. When you're thinking about dance or maybe being in an art therapy class, you are meeting other people. There's a social component to it. There's a creative component to both of those things, which I think engenders a sense of purpose and also a sense of play.

Dr. Britt Stone 00:24:13
These things are definitely going to impact someone's quality of life and a sense of well-being. When you're talking about things like acupuncture and massage therapy, you of course have the sense of a therapeutic touch. You have a practitioner who is listening to you with your particular concerns and issues, incorporating that in and then making a plan of therapy that is particularly tailored to you. I think that's also very impactful as well, that extra bit of actual corporal work and also attention.

The time to just be, right? When you're being massaged, often you can let your mind go lots of places. You could be thinking about maybe what you need to do when you leave the session, but odds are you're probably going to fall asleep or just be fixated on how good this feels, in addition to what is actually happening in the body. That's going to also reflect with quality of life and a sense of wellness.

In the same way, when you think about acupuncture, for that 30 to 45 minutes when you're in a quiet and dark room, that is a time for yourself, a time of presence, which we also know, this mindfulness component, is incredibly impactful for people and the improvement in being able to just, when that's over, get up and move and do the things that they need to do.

We're talking about integrating complementary and traditional care. The importance of open communication with your healthcare team is of the utmost because it's going to take a personalized and balanced management plan. Often, when I think about even in my own clinic, when a patient will come and they'll ask me what I think about various modalities, the first question is, well, what are you trying to make better, right? And seeing what do we have here right now that we can optimize, and then what are some things that we can do that have low barriers to entry for a host of reasons? They're accessible because of where you live. They're not financially exclusive. They aren't horribly time-consuming. They don't interact negatively with other things you're already doing.

Often, perfection is the enemy of good. If you can come up with maybe adding in one new thing, giving it a good try for a period of time and then being able to monitor that outcome and adjust as needed, then I think that is a huge benefit to people. I think that also what can sometimes be a hard thing is when you bring these options up to your provider, it might be that they're not familiar with some of the modalities. It's a perfect collaborative, educational time where it's like, well, I haven't heard of this. I'm going to go do a little bit of reading and see if it's something that seems to be worth your time. Or anecdotally, it seems like maybe this has been beneficial. Let's see if we can try this or not. I think just having an open conversation that is dynamic is always key.

Dr. Britt Stone 00:27:35
I think some other things to keep in mind are: what does it mean to have a good life while living with Parkinson's disease? Because that differs from person to person. For someone, it might mean a good life is being able to do a hobby, whether that's playing a sport, playing an instrument, doing some sort of creative pursuit of art. It might be just spending time with your family, being able to enjoy your grandchildren, enjoy your spouse, play bridge with your friends. It might be travel. It might be being a part of your community or continuing to do the job that you're doing for as long as you can.

The idea that social connection, body movement, learning new things and creating all have healing properties. These are really hard things to test, right? Because how can you isolate out one of these things from all the other components you're doing? If I wanted to do a study for social connection, there's so many moving parts to that that could confound the results. But we do know, and it's very intuitive, that being with people you enjoy, moving and innovating is healing.

Talking with your movement disorder specialist and your medical team about how to incorporate some of these therapies into your life as it makes sense for you is also very important. As I said before, perfection's the enemy of good. You don't have to do all the things. You can just start with one thing that you're interested in. Don't get overwhelmed. You don't have to do it all. You can try something for a period of time, and if you don't find it beneficial, you can pivot to something else. I think what's really encouraging is there's lots of scholarly interest in a lot of these modalities now, and we're continuing to learn new information. I think that is also really encouraging.

I'd also say that Parkinson's does not exist in a vacuum. Often, there are people who are living with Parkinson's who might be living with other chronic illnesses where some of these modalities might be beneficial to those other issues as well. In which case, if you have a good baseline of health management for everything, that is going to set you up for your Parkinson's disease to be better managed as well.

Some resources that I have for you are, of course, the Parkinson's Foundation has a host of resources. There's also local support groups, because there's the power of crowdsourcing and talking to other people who are living with Parkinson's disease that I think is absolutely key. The PMD Alliance is another support group that is also really great at helping people throw the net wide at other options for ideas and how to approach these kinds of conversations with your care team. I can't say enough about candid discussions with your care team.

It's really important to feel that you have a therapeutic alliance with the people that are walking alongside you through this illness, and that you are heard and validated and seen. As I look at the clock, I'm like, oh my goodness, I've gone fast. But I know we have lots of questions, so we'll get into that shortly.

Thank you so much for your time. I hope this was helpful.

Dr. James Beck 00:31:12
Dr. Stone, thank you very much. I really appreciate your presentation, and I think you covered a lot of really interesting things. Before we jump into the questions, I want everyone who's listening to know that our team is organizing the questions as they come in, and we really want to keep our questions relevant to today's subject. We get a bunch of questions around many things related to Parkinson's disease, and know my colleagues are there to help guide you as part of the process.

Kudos to Dr. Stone for giving us an adequate amount of time for questions. It's a rarity here for Expert Briefings, so thank you very much for that. I want to jump right in with this one, because we talk about integrative medicine, these different approaches to treating Parkinson's disease. This is something you probably see as well as a movement disorder neurologist. Do you have people who come into your clinic who are early in their disease and they're asking you, do I have to take medicine? Because there are people who just don't like taking medicine. They've got mild symptoms, for instance, and they're just trying to think about other therapies.

The question we have coming in is this listener is worried that their doctor will be upset if they refuse the medicine. How do they have that conversation with them? When do they have to take carbidopa-levodopa? How do you advise your patients, like, okay, I think we're at the point where you should consider this medicine. I know you've been reluctant to, but we're at that point. How does that conversation go? It's an open-ended question, Dr. Stone, but I'm sure one you've probably had more than once.

Dr. Britt Stone 00:32:45
Oh, yes. Yes, had one just this morning, actually. I think first it comes down to, what is my role as your movement disorder specialist? To me, it is to be a guide for you. I am not the one making the decision. I always say that ultimately, you're the master of the ship, and I'm there to help facilitate that. To that end, I'm going to be honest with you. If you're asking for my feedback, I'm going to tell you when I'm like, well, it sounds like you're pretty miserable, and maybe this might be a time to now consider a medicine. Some situations come to mind to me.

If I meet someone who's early in the disease process and they don't have a lot of symptoms that are bothersome, or a little tremor but it's manageable, I tell them, you know what? Increase your activity.

Let's get exercise. Let's have physical therapy see you, get a baseline, and let's up the ante on your exercise and your activity. Let's make sure your sleep is good. Let's make sure your general health is good, that you're eating well, that we've optimized all these things, and that you're managing stress and learning how to manage stress accordingly in a healthy fashion. This is what I tell people to do at the beginning. And then if someone is hesitant to take medicine, I tell them, look, this is a symptom manager. This is not changing the outcome of your disease, as far as we know at this point. Therefore, I'm not going to be pushing anything down your throat. Also, I'm not getting any kickback on this. You take the medicine when you feel like, together, we are going, "I think it's time."

Often what happens is I kind of lay out for people all the options, and then I say, you can think about this. You don't have to make a decision right now. Send me a message or give me a call, and if you decide you want to start the medicine before our next visit, which is usually a couple of months after I've initially met someone, we'll do it. Then we go from there. I've had people who've started medicine, then maybe they had a side effect, maybe they had lots of nausea or low blood pressure, and they were very reticent to continue to move forward or try an alternative. I let them reset. I say, okay, we can hold for a bit and let you get comfortable with the idea again, because often eventually things will declare themselves in such a way where someone says, "Okay, I think I'm ready to see what needs to be done." I just kind of am there as people figure that out.

Dr. James Beck 00:35:07
Got it. I think that's great. You're the advisor, or a shepherd, if you will, for these people as they're moving forward. Maybe this is an obvious question or response for you, Dr. Stone, but the approaches you're suggesting here and talking about today, they're meant to augment prescription medicines, right? They're not a replacement. They're not as effective. There's a reason why almost all your patients are taking carbidopa levodopa, whether they may want to or not, just because there's only so much we can do to control symptoms.

Is it fair to say there's only so much we can do to control symptoms, but some people will eventually need to loop in that medicine as part of that process? Is that part of your conversation, to just level set so they have expectations as they move forward?

Dr. Britt Stone 00:35:58
Yes. I definitely do say that to people. In fact, I often tell them how I think of levodopa as actually making it easier to then do the exercise and the movement and the activity. Sometimes if you have profound rigidity and slowness, it might be really hard to hike or run or do these things that you'd like to do. So then if you have the medicine there to help actually facilitate that, it's kind of laying the foundation so that you can then do the actual work, which is the active lifestyle, the social engagement, all of the other things.

Without fail, unless someone just doesn't tolerate levodopa, people end up on the medicine. I would say that if we knew that it was just like these other therapies and just leaning into those therapies did it, trust me, there are many people who I think would have loved for that to have been the answer because they were doing it. And yet still, they ultimately came to me and they were like, okay, yeah, I'm going to try the levodopa now.

Dr. James Beck 00:37:01
Okay. I think it's clear that there's no secrets here. It's all pretty clear. You talked a little bit about functional medicine and complementary medicine. They're not exactly the same. Would you mind just reiterating the definitions of that? I think it may still be a little unclear, and I want to make sure that I'm using it as we continue our conversation. Maybe it's more for me than our audience, but let's just assume our audience needs a refresher.

Dr. Britt Stone 00:37:27
Sure. When I think of functional medicine, I think of it as a subset underneath the integrative medicine umbrella, which is all the medical modalities that exist: Western medicine and then your complementary therapies, Ayurveda, East Asian medicine, Indigenous medicines, functional medicine. The specific philosophy of functional medicine is looking for the root cause.

What separates it from maybe Chinese medicine or Ayurveda or these other things is they might not be full of, let's do a bunch of laboratory tests and send off labs on your stool and your urine and your hair, and look for heavy metals, and look for genetic metabolizing, how you metabolize different compounds, or mold or things of that nature. So it's very heavy in looking at tests to get an idea of what you might be like from a kind of biochemical makeup, and then seeing if it can figure out a root cause that's contributing to your issues.

Then you have the complementary therapies that can be used if there's something that then needs to be addressed. That's where we talk about things like herbalism, supplements, which to your point before, a supplement is an add-on, it's not a substitution. Then massage therapy and body work, mind-body medicine, meditation, all these other modalities that can be used in therapies.

Dr. James Beck 00:38:52
Fantastic. That's a really good point. I like that supplement is not a substitution. I'll have to remember that. Some of these non-drug therapies you talked about are expensive, and they're not always covered by insurance. The benefits aren't always guaranteed either, because of the costs involved. How do you advise patients on deciding which therapies are worth trying, which may have limited value, and what can they realistically expect in the short term or long term in terms of time or effort in order to go through this?

That's one of the things I think you brought up. How do you handle those kinds of conversations when people come to you either with an idea or you have some suggestions for them?

Dr. Britt Stone 00:39:36
I think the first thing that I often tell people is this idea that placebo effect also increases the more invasive or the more expensive something is. The more skin in the game you have, the more you are invested in something working. It makes sense then that spending maybe $3,000 for a red light therapy mat, you're like, this is going to work. It's going to help my pain, because in the back of your head, subconsciously, you've spent thousands of dollars on this mat.

Often when I'm talking to people, the first thing I try to get them to do, and the human in us really is not excited by unglamorous things that work. We know that eating well and exercising and getting good sleep and all these things, we should all be doing this. Preaching to the choir here. But we're so seduced by, ooh, here's this glamorous new technology thing that I can do that's going to make everything better. It's just kind of reminding people, I know the bright and shiny thing seems really fun, but first, let's just do the thing that's free, the thing that everyone can do.

When you think about things like tai chi and qigong, which I have seen such benefits for people from a social standpoint and then from core strength and helping with managing anxiety and mood disorders, you can find free courses of that at your senior center. If you live in New York City, oh my gosh, the elders are in the parks doing their tai chi. They'd be thrilled to have you join. That doesn't cost any money.

I often say, let's first start with the things that are really accessible for everyone. If someone's really adamant and they have the means and they're like, I want to do this thing, I'm like, okay, if we're not breaking the bank and this is not going to be a risk, feel free. Then I want you to report back to me and let me know how you're doing.

Dr. James Beck 00:41:36
Yeah, I think that's a really good point. I like how you touched on some of these other mental health issues, because that's an important thing you've touched on in your presentation here. When we talk about complementary therapies, these other approaches involved as part of integrative medicine, they can help emotional and mental health issues as part of the process.

Is that something you advise people to do specifically to help them cope with some of these non-motor issues that sometimes appear with Parkinson's disease?

Dr. Britt Stone 00:42:15
It definitely is. I think that the mood disorders in particular are the sorts of things that can be really hard to get a handle on because they're not just biochemical; they are also situational. So there's this concept of you have a chronic illness that has a weight on you. Also, there's your own facing of one's mortality that has a weight, and it's acutely present when you have an illness that you know gets worse over time.

Then I think you've got the social components of, I don't want to be a burden on my family. This is impacting the aging I expected to have. How's this going to impact my finances? How do I actually feel? Being able to parse out what is the neurochemical component, because we know in Parkinson's people can often have an uptick in anxiety or depression just because of the disease, even if all those things are already okay, but then these other things, life itself, are also contributing.

So when you can maybe add in a modality that is helping you with how to actually live, and how to be, and reconnect to your body and take the time to be still, I think that the return on that is pretty limitless.

Dr. James Beck 00:43:29
Yeah, fantastic. One question that's come in, and I've seen this before and I'm sure you're well aware of it. You have people who can intellectually recognize the value of the exercise and getting involved in things, but one of the real burdens of Parkinson's for some individuals is fatigue. They just don't have that energy or emotional energy to get up and do it. How do you help them move forward on that?

I imagine that's a difficult situation to try to overcome. What advice would you have to give to the loved ones, the care partners, who are there to really be the cheerleaders of those living with Parkinson's so they can help get them going? I suspect that if someone can get going on these things, as you've mentioned, maybe some of that will turn around a little bit. I'm not saying it's going to make everything go from night to day, but hopefully it can make enough of an impact that they can see it's worthwhile to pursue these things. What would you suggest?

Dr. Britt Stone 00:44:34
That's a very good question, and that is a very difficult thing. Actually, it kind of is the segue between that continuum of fatigue and then the apathy component, which, oh, apathy is like our least favorite symptom because there is not a pill for that. I think that those two things are interconnected sometimes, too, where the motivation to do something is not there, and so then it doesn't happen because, I just can't even, is what a lot of people say.

What I tell people is, first, you can't make anyone do anything that they don't want to do for themselves. That is a hard thing when you are a care partner and you know, if I could just get them to do the thing. But like any other sort of issue when you're dealing with health and well-being, it has to come from that person of, I want to feel better.

Sometimes you can Jedi mind trick people. I had a patient in particular who kept complaining about her apathy, and I said, well, did you want to come to your appointment today? No. I was like, well, why'd you come? She's like, well, because I figured maybe you'd have some answers. And I smiled, and she goes, oh, I see what you did there. I said, you know you're apathetic. So your motivation is a moot point. You're not going to get it.

That doesn't mean you still don't do stuff. If you're not going to get the motivation, but you know that it could probably make things better, just like brushing your teeth, like taking a shower, I'm going to put this exercise thing on the calendar, and we're going to start low. We're going to start with me just walking a little bit a few days a week, and then we're going to go up from there. Then maybe I'll do a class, but maybe I'll make a friend, and then I'll have the social obligation of having to show up. Because there's something about that sort of shame, not the shame that is toxic, but the shame that, I don't want to let people down because I said I'm going to show up.

That can actually really motivate people in a way that themselves cannot. I know I'm not this person who can exercise on my own, but if I have a class that I've paid for and that people expect me to be there, I'm like, well, I can't flake because people are going to want to know where I was. I think it's just being really honest about that.

With fatigue, that idea that you're fatigued so you don't move, so then you don't move. But if you move, you would have been fatigued after, so you're going to be tired anyway. You might as well just move through that fatigue, and you actually might get a bit energized. Then the fatigue is like, I worked for it. So now I did that class and I'm going to go take a nap, as opposed to I just sat on the couch all day.

Dr. James Beck 00:47:08
Yeah, that's a really good point. I like the idea of you've earned your fatigue. You've worked for it. It's part of the process. Can we talk a little bit about some contraindications here? People with deep brain stimulation, DBS surgery, are they able to take advantage of these things, or are there any concerns with your DBS patients about taking advantage of this?

Dr. Britt Stone 00:47:29
There are no interactions. Red light therapy doesn't seem to be a problem with DBS. I've had patients who have gone for red light therapy for pain and such, lying on the mats, or they wear their mask for their anti-aging or whatever they might be doing. No problem there.

If people go for massage, because of course there's a tunneling on the side of the neck, I just tell them, make sure that your masseuse is aware so they're just careful in that area and they're not manipulating over the pocket and over that area. But you can still go for massage and body work, and the same for acupuncture, as long as you just avoid any needling over the actual region. There's really not any, I can't think of any meridians that people would be putting needles in that region anyway. So no interactions or contraindications from any of these things.

Dr. James Beck 00:48:16
Okay. We talk about CBD, and it is a pharmacologic mechanism. It may not be something that comes from pharma, but it certainly has a chemical potency in the body. Are there concerns there? I mean, there are some folks who are concerned that high doses of this stuff can maybe be mood altering, schizophrenia or things like that. How do you advise your patients about this who come to you and say, I'm thinking about doing this? What kind of advice can you give me?

Dr. Britt Stone 00:48:47
Absolutely. I'm in Tennessee, where we do not have recreational use of marijuana, but hemp products are still used quite a bit here. Of course, you can find them anywhere: the farmers market, the grocery store. So often I tell people first, once again, what is it for, right? If it's a pain issue, like I have a sore knee or a muscle that's crampy, then I say go for a topical balm. That's the local focal place that you have the issue.

If it's sleep or anxiety, I've had people who will use either the tincture or a hemp oil or gummies that sometimes have melatonin in them on occasion. I always say just the lowest dose to start. Usually, if it's just CBD, the most that people have said is either it doesn't do anything at all, or maybe they're a little extra drowsy.

If it's marijuana, that is different. I actually have a vivid memory of a very beloved patient who had gone to visit family in Illinois, where it's legal, and so she went to the dispensary and got her candy or whatever and misinterpreted the dose. So she took a little bit and then thought, "Oh, I don't feel anything," and took a little bit more and then thought she was dying because she was actually just very high. The metabolism through the gut is slower, so it took a while for it to actually catch up. For some people, this might be an anti-anxiety effect, but for others, it can actually make some people anxious or confused or disoriented. That can be a fall risk and that can be a safety risk, or people can have some hallucinations.

You have to be careful, especially because with all the various strains and the dispensaries for marijuana in particular, they're more potent. That can have an effect. I always tell anyone who's interested in any of those, if you're going to start, start with the absolute lowest dose. If you have issues with cognitive impairment and such, I really try to stay away from marijuana and go more toward a CBD-based thing only, so there's no high THC component to hopefully mitigate some of that psychiatric, neuropsychiatric symptom that people can have.

Dr. James Beck 00:51:08
Yeah, I think that's a really good point. I know the Foundation has some good materials on that as well, medical cannabis and other products, as part of the process. For red light therapy with melanoma, is it an issue? Do you have concern about skin cancer and red light therapy? You mentioned everything has to be used properly, but assuming that people are following the instructions, is that a concern, skin cancer?

Dr. Britt Stone 00:51:33
It is, interestingly, not a concern. In fact, red light therapy is being used by dermatology for some of the skin cancers, which is very interesting. It activates a photosensitizer drug. When I was doing the research for the talk, I was like, oh, I didn't even think about that. But one of the drugs they use as a chemotherapeutic is activated by the red light therapy. So it is actually not a risk.

Dr. James Beck 00:51:59
Okay. Interesting. That's interesting. We've talked a lot about practitioners. You are very accomplished in this area, but you're in Nashville. You can't see people all throughout the country. How do people find experts in this area who can help them and practitioners who specialize in massage or acupuncture for PD? Or maybe a better way to ask is, do you need to find someone who's a specialist in acupuncture and massage for PD, or can you go to someone who's more broadly trained? I imagine it's harder to find those specialists as opposed to other folks.

Dr. Britt Stone 00:52:37
I think it might depend on where you are. There are some places where you might be able to find someone that's specialized just because, if you're in New York City, for example, I'm sure there's somebody who is skilled specifically for this niche. But there might be places where that isn't the case specifically. Even here, while there are acupuncturists that are not specific for PD, they see a lot of patients with Parkinson's. So then the practice evolves, where they're like, oh, this is now the practice I have where I see a lot of people who have this condition, so I'm more familiar.

I often say if you're interested in a place, ask them, do you have any clients who have this condition? That way you're not the guinea pig, and I think that's reasonable. Also, integrative medicine actually has a fellowship now, and for the board for integrative medicine, there is actually a website where you can find practitioners that are MDs who are skilled in integrative medicine. Often, wherever they might happen to be, and they're all throughout the country, they can help guide you in, here are the specialists that we recommend for these particular modalities.

Dr. James Beck 00:53:52
Fantastic. We have a question in from a person who is a therapist, and they're asking how to provide massages and different modalities to help folks with PD. Is there a place for them to go to get some expertise on this? I know we have some very good guidelines around exercise, but I don't think we have anything regarding massage or some of these other integrative therapies. I'm curious if you happen to know anything because you certainly received some specialized training, and I don't know if that's available just for clinicians or more broadly for other folks, other specialties.

Dr. Britt Stone 00:54:29
That's an excellent question. Offhand, I don't know of anything specifically, but I would venture to say, if you're a therapist interested in that, I think about, of course, if there's massage therapy for particular things, like when I talked about the studies of some of the East Asian modalities for massage, like shiatsu and tuina, that might be helpful for Parkinson's motor symptoms in particular. Maybe then if you did a course in that, that would give you that sort of expertise.

I think really, if you're thinking about what are the things that patients with Parkinson's are having issues with, like what body parts are most impactful for them, there might be lots of neck rigidity or lots of extremities. If they have inversion of the foot, like a dystonia or something, or a lot of tremor, you might have pain in the upper or lower extremity. Then being able to maybe focus your massage around some of the areas. But I don't know of a particular place for training. That does not mean it doesn't exist. In fact, I bet you it has to.

Dr. James Beck 00:55:37
Okay. Fair enough. It's an opportunity to do some investigation as part of it. One last question, if I can, Dr. Stone. We haven't talked about supplements. They're not substitutions, but are we talking vitamins? What kind of things would you recommend just people overall maybe worthwhile taking versus other people who may have specific areas that may need addressing?

Dr. Britt Stone 00:56:04
Absolutely. First, I always think about, is something low? Am I deficient in something? If you are on levodopa, things you should consider to always keep an eye on that could be coming low because they can compete with absorption. Vitamin B6 is the number one that competes with carbidopa levodopa for absorption. So if you ever start to get some numbness or pins and needles, tingling in the feet, let your doctor know. They can check your B6, check your B12. Those are easy things you can supplement.

If you're not low, you don't have to worry about taking extra B vitamins in that regard. Vitamin D, most of us are low because we're not walking around at peak sun without sunscreen these days. That can contribute to fatigue, mental fogginess and pain. So getting your vitamin D checked, making sure that, and we should probably all be taking a supplement of vitamin D daily.

Magnesium is another one. So if you don't have kidney issues, heavy on chronic kidney disease, especially women a lot of times, particularly if we have any young-onset individuals, women still of childbearing age with menses and such, magnesium can be really great for muscle cramps and general calming and relaxation before bed. If you're looking to relax and not stimulate the bowels, then magnesium glycinate and threonate are really wonderful. Then Milk of Magnesia, magnesium citrate, great for if you have constipation. Those are the ones that I always say you can't go wrong with these supplements.

Dr. James Beck 00:57:45
Fantastic. Thank you very much, Dr. Stone. Really appreciate your time today. It's been fantastic, your expert briefing on functional medicine and complementary therapies in Parkinson's. I want to also thank everyone in the audience today who joined us. It's been fantastic to have lots of questions come in. I hope we were able to address almost all of them, or at least a good chunk of them. I understand if you weren't able to get your question answered. We did have, I've seen now, a lot of questions come in.

Please call our Helpline: 1-800-473-4636, 1-800-4PD-INFO. You can also reach out by email, if that's easier for you, at Helpline@Parkinson.org. That's always a good resource. I've got fantastic colleagues there who are really good at answering all kinds of questions. They're really quite good.

Just something to keep in note: this is just part of our PD Health @ Home series, and we have a range of these virtual education and wellness programs each week. If you're interested in them, feel free to visit Parkinson.org/PDHealth, and you can learn more and register by taking a look at these options. Again, my colleagues do a great job at organizing these things.

Before you go, I just want to let you all know that we're in the Zoom world. It's going to go to black, but hopefully what will happen is a website will open up in your browser and give you an opportunity to give us feedback. How did we do? How did Dr. Stone do? We really value this feedback. Please let us know because this is the type of information we use in order to improve the programming, give feedback to our speakers, and ensure that what we're doing, as always, is aligned with the needs and priorities of those living with Parkinson's disease, you, our audience.

Before we go, I just want to say thank you again. I think we are closing up. This is the last one of our series for the winter, and we'll start again in the new year. Thank you, everyone, and take care.

Dr. James Beck 00:00:01
Hello everyone, and welcome to the Parkinson's Foundation Expert Briefing. I'm Dr. James Beck, Chief Scientific Officer of the Parkinson's Foundation, and it's a pleasure to have you with us today. In today's briefing, we will explore the wide spectrum of motor symptoms, how they evolve and strategies for managing them. I think it's going to be a really interesting topic today.

But before we get started, we'd like to get a sense of who's joining with us today, as we always do. We're going to launch a poll. If you're joining us on Facebook Live, just be reassured, you can put a little bit about yourself in the comment section. In this poll, we're just trying to get a sense of who our audience is today. It tends to be fairly consistent, with a lot of people with Parkinson's, as we expect, but sometimes we have folks from other backgrounds who join us, and it's always nice to really understand what their connection is to Parkinson's disease. We'll leave that up for just a little while longer.

Hopefully we'll get that. I hope, wherever you are, the weather is at least somewhat nice. I'm on the East Coast, and we finally have a break in the weather. I understand, though, it's not going to last. Anyway, thanks to everyone for sharing your connection to Parkinson's disease. Let's see what we've got as a result of our poll. Great. A lot of people with PD are joining us today, as well as their loved ones, as part of the process. We have a good number of scientists and healthcare professionals, so that's great to see. Welcome, everyone. We're happy to have you here.

Before we begin our formal expert briefing, I always talk a little bit about the Foundation and remind everyone we're a nonprofit foundation dedicated to improving the lives of those living with Parkinson's by enhancing care and advancing research. It's important to remember, as we do always, our efforts are deeply rooted in the collaboration we have with the Parkinson's community. That means everything we do, we ensure is aligned with the needs and priorities of you, those people living with Parkinson's and those who support them. And so, as I've said, today's program is just another example of how we're working with you to meet those goals.

Dr. James Beck 00:02:04
One of our key initiatives that we offer through the Parkinson's Foundation is PD GENEration. This is our opportunity to offer free genetic testing and counseling to people living with Parkinson's. Any adult who wants to participate practically can. By participating, you can learn about your genetic connection to Parkinson's and contribute to research, and that will hopefully drive new treatments and one day a cure for those of us living and fighting Parkinson's disease. So we encourage, if you've already participated in PD GENEration, share this opportunity with your community.

I believe that together, we can really make a difference in tackling PD through this idea of sharing research and resources across the community. For your convenience, we're going to be, as we always do, recording our expert briefings. They'll be archived, and if you've signed up for it, you'll get an email with a link to the recording, which you can share with other individuals who may want to participate. If you've missed part of it or have to walk away, don't worry. It will be here for you to watch again and again.

Now I'd like to move on to introducing our sponsor, Light of Day, who's here to help support our PD Health @ Home series. We are very pleased to have them on board as a sponsor for us.

Dr. James Beck 00:03:07
Now I'd like to introduce Dr. Pablo Coss. He's a movement disorder specialist and assistant professor of neurology at UT Health San Antonio. Dr. Coss completed his Doctor of Medicine degree at UT Health Science Center in Houston and then went on to complete a neurology residency and movement disorder fellowship at San Antonio, where he has since stayed on as faculty in the movement disorder division.

Dr. Coss specializes in the diagnosis and treatment of a broad spectrum of movement disorders, including Parkinson's disease, and a particular focus of his is deep brain stimulation for PD and other movement disorders. He's focused on botulinum toxin injections and has an interest in Huntington's disease. Dr. Coss has a strong background in education, so we're very pleased to have him here today. He enjoys teaching neurology residents, movement disorder fellows, students and the community. He serves as the assistant movement disorder fellowship director at UT Health San Antonio.

Dr. Coss has a strong passion for serving underserved communities in South Texas and leads a movement disorder clinic in the border town of Laredo, Texas. Thank you very much for your time and for joining us today.

Dr. Pablo Coss 00:04:36
Thank you, Dr. Beck, for the introduction. I'll get started here sharing my screen. 

Dr. Pablo Coss 00:05:02
Okay, great. All right, everybody. Thanks for having me. Thanks for giving me the opportunity to talk about the motor symptoms of Parkinson's disease, the tremors and all of the other symptoms that folks with Parkinson's struggle with, with regard to movement of the body. Greetings from sunny San Antonio. Hopefully everybody else is having a break from the bad weather of the winter. I have no conflicts of interest to disclose in relation to our topic today.

What I want to highlight today in terms of learning objectives is, first, to list and describe and learn the vocabulary of all of the motor symptoms that are associated with Parkinson's disease. After we've done that, we will discuss the underlying physiologic brain disorder that gives rise to these motor symptoms. Then the second half of the talk will be focused on various treatments when it comes to medications, non-pharmacological treatments and surgical treatments that are available to help the motor symptoms of Parkinson's disease.

Dr. Pablo Coss 00:06:03
Just to put it in a bit of historical context, what we're talking about when we talk about motor symptoms, we want to go back to the very first description of Parkinson's disease by Dr. James Parkinson in 1817. He wrote this essay called, he wrote a paper called, An Essay on the Shaking Palsy, based on his observations of several cases of the condition around London. He identified what would later be called the cardinal or motor symptoms of the disease, starting with a particular kind of tremor called a rest tremor, the flexed posture of many folks with Parkinson's when they walk, some of the walking changes or what they called the festinating gait, and then an insidious, progressive course.

That was in 1817. Then in the 1880s, Dr. Jean-Martin Charcot, working in Paris, further categorized the main motor symptoms of Parkinson's and highlighted the symptoms of bradykinesia and rigidity. We'll talk a little bit more about what that means in a second. He was also the first one to promote calling the condition Parkinson's disease in honor of James Parkinson for describing it 50 years earlier.

Dr. Pablo Coss 00:07:33
When we talk about the motor features, again, we're talking about symptoms that have to do with disorder of movement, of difficulty moving. That is both making your body move when your brain and your mind want it to move purposefully, and also making your body still when your brain and your mind don't want it to move, when they want it to be still. Folks with Parkinson's have difficulties with both of those issues.

First of all, they have the tremor. Most of us, when we think of somebody with Parkinson's, we think about somebody shaking, some part of the body shaking, usually the arm. We have different kinds of tremor that can affect people with Parkinson's, so we'll get into that in a little bit. Even more fundamental and defining of the condition of Parkinson's is this other motor symptom called bradykinesia. Also known as akinesia, some people call it hypokinesia, but all of that is various ways of describing slow and small movements. Folks with Parkinson's, when they're trying to move purposefully, might find that their movements are smaller or slower than they used to be in the past.

In addition to that, there's also rigidity, which most of the time we colloquially call stiffness. That's really an excess activation of muscles when they should be relaxed, which leads to this resistance to passive movement of the limbs. Then there's postural instability, which refers to loss of balance reflexes leading to stumbles and falls. We will talk about several other motor symptoms that are kind of in relation to these, but these are the four cardinal features that are actually also very important to identify, at least two of them, to make the diagnosis of Parkinson's disease.

Dr. Pablo Coss 00:09:17
Throughout the course of the presentation, I am going to be showing various videos of patients who have passed through our clinic at UT Health San Antonio. It's a very common practice in our specialty to take videos of our patients, both to track their progress over time during certain key steps, like getting a deep brain stimulator and stuff like that, and also for educational purposes for our residents and the community as well. I've blurred the faces to try to protect their privacy, but I'm very, very grateful that they allow us to take these videos and share them in these kinds of settings.

Starting with rest tremor, one of the most defining symptoms of Parkinson's is the rest tremor. Many of you who have Parkinson's probably have experienced the rest tremor. The technical definition of tremor is a rhythmic, fairly fast and continuous movement of a body part across a joint with a kind of sinusoidal wave pattern. Broadly, that's what a tremor is. But then we can subdivide that into various kinds of tremors, and the most classic form of a tremor in Parkinson's is a rest tremor.

Dr. Pablo Coss 00:10:32
That's a tremor that happens when the body part affected is relaxed or at rest, whether that's hanging at your side, your arm hanging at your side as you're walking, or resting on the lap or on top of a table. It tends to shake when the arm is relaxed, not in use. It most often affects the arms, but plenty of people have it in the legs. Plenty of people have it in other parts of their body, like their jaw or their face.

In the textbook description of somebody with Parkinson's, it is an asymmetric tremor that affects one arm more than the other or one side of the body more than the other. Often you'll hear it described as a pill-rolling tremor, which describes the way that the thumb tends to rub against the other fingers as it shakes, as if you're rolling a pill between your thumb and your other fingers. But not everybody has that quality to the tremor.

Here, we're going to see a good example of a rest tremor affecting a patient's right arm, and also you can see the right leg shaking there as well. You can see also that the tremor goes away. The arm stops shaking when he picks it up and starts to do these movements with it, and then it starts shaking again after a few seconds of him putting it back down. That's the typical rest tremor of Parkinson's disease.

Dr. Pablo Coss 00:11:36
That's not the only kind of tremor that folks with Parkinson's can have. I will say also, as many of you probably know, the rest tremor itself can be variably uncomfortable, distracting, can make oneself self-conscious in public, and can get in the way of sleep if you're trying to go to bed and some part of your body is shaking against the pillow or against the sheets. It can, of course, be a source of discomfort and disability, even if it's not intruding in the use of the hand per se.

But many folks with Parkinson's also have what we call an action tremor. An action tremor is a tremor that comes out when the hand is in use or when the body part is in use, whether that's when it's in actual motion, when it's holding a certain posture or position, or during a specific task like writing, holding a cup or using utensils. Many folks with Parkinson's have a combination of a rest tremor and an action tremor, and so we'll see both here in this video.

Dr. Pablo Coss 00:12:57
There he is. He has his hands up, and his hands are shaking even when they're up, so we call that a postural tremor. As he tries to make purposeful movements with his hand, the finger tapping and all that you're going to get used to seeing, the blurring there might get in the way, but I think you can still see the hand is still shaking even as he's trying to move it. So that's a kinetic tremor. Then even when the hands are relaxed in his lap, he's still shaking. That's the rest tremor. So he has multiple categories of tremor affecting him. You can imagine how that would get in the way of many activities of daily living and be very disabling.

Dr. Pablo Coss 00:13:39
Again, moving past the tremor and really getting to the heart of Parkinson's disease is this symptom called bradykinesia, or a slowing or shortening of voluntary movements. This can affect the whole body or various limbs and other body parts. When the facial expressions become slow and small, people develop this kind of what we classically call a masked face, as if a person is wearing a mask that doesn't make expressions. It can affect the movements of the hands, which can make it hard to accomplish fine motor tasks like ripping a bag open or unscrewing a cap or using tools, etcetera.

It can affect a person's ability to stand easily from a chair. It can affect a person's ability to walk, and we'll talk more about the specific walking changes in a second. This, for most people, translates into some amount of disability because it becomes very effortful, leads to a lot of fatigue to do your daily tasks because your body is slow to move when you want it to move. It takes longer to accomplish tasks that you used to be able to do quickly.

Dr. Pablo Coss 00:14:37
Here we have an example of bradykinesia. You can see how, when I ask him to tap his fingers, and I'm asking him to tap them as big and as fast as he can, he makes these very, very small and very slow taps. So it's a combination of the slowness and also the smallness of the movements. Here, I'm asking him to open his hand as wide as he can, and he can't really stretch the fingers very much. They're very slow movements as well.

Here he is trying to stand, and he's really not able to. This is quite a severe form of bradykinesia. I'm asking him to stand, and he's actually putting in some effort into standing, and he's not able to, so his spouse is going to come and help him stand up. He stands very slowly. He even has a bit of trouble standing, and he kind of almost wants to fall back down or sit back down quickly. Okay, so that's bradykinesia. This is a similar example, but it shows about the same thing as we just saw, so for the sake of time, I'm going to skip this one.

Dr. Pablo Coss 00:15:43
The next cardinal motor symptom that we're going to talk about is rigidity. I don't have a video to show you for this because this is not something that can be seen easily on video. It's something that has to be felt. Patients feel it as a tightening of the muscle, as an uncomfortable soreness or stiffness of the muscles. But we feel it on exam by moving the arms and legs at the different joints, at the elbows, at the wrists, at the knees, at the ankles, and seeing how much resistance there is when a person is trying to relax as much as they can to our passive movement.

Often you'll hear us describe this kind of rigidity as the limb feels like a lead pipe, like you're trying to bend a lead pipe because it's so stiff, or cogwheeling, in the sense that the limb kind of ratchets as we're trying to move it, which is probably just the rest tremor coming out as we're trying to move the limb.

Dr. Pablo Coss 00:16:45
Another aspect of Parkinson's, which very commonly affects people but is not considered a cardinal motor symptom, is something called dystonia. This is different from the rigidity we just described because when a person is rigid, their limb is relaxed and at rest. It's just when you try to move it that you feel the stiffness. In dystonia, the limb wants to assume, or the body part wants to assume, a certain abnormal position.

It very commonly affects the hand. It might make the fingers want to clench up or put themselves in a different position. It very commonly affects the leg, and the most classic form of that is a turning in of the ankle and a curling of the toes, which can be very painful. It often affects the face and, in particular, the eyes. Some people with Parkinson's might have trouble opening their eyes voluntarily because the muscles of the eyes want to close them tightly. Oftentimes, it comes along with a jerky tremor, a dystonic tremor, that can kind of overlap on the other forms of tremor of Parkinson's.

Dr. Pablo Coss 00:17:53
Here, we're going to see the typical ankle inversion or foot inversion dystonia in a patient with Parkinson's disease. You can see there, as her feet are dangling and should be relaxed and just lying gently on the ground, that left foot wants to turn in and is shaking. She's describing there to me how she likes to try to make it stop with her other foot, so she tries to rub it or put it down. But you can see how the foot turns in more and more and more as she talks. That is dystonia of Parkinson's disease. There are many other causes of dystonia as well, not just Parkinson's, but it's often a motor symptom of Parkinson's.

Dr. Pablo Coss 00:18:43
Another bothersome motor feature is vocal problems, which can come in a variety of different forms. Oftentimes it's reduced volume. The speech becomes kind of monotone, which makes it hard to put emotional expression in your speech. Articulation of specific consonants and vowels can get kind of poor, so it becomes slurred and less intelligible. Stuttering, the speech can become rushed, so that the syllables are kind of running together, which makes it harder to understand. Breaths can become shallow, so you can only speak short sentences before you have to take a breath and then continue speaking.

Here's a sound bite of a patient of mine who has particular problems speaking because of their Parkinson's. There's going to be a lot of background noise in this sound clip, but take my word that even without the background noise, it's kind of hard to understand what he's saying. Let me put the volume up for this one. Tell me the months of the year. Tell me a little bit about what it feels like when you're off in terms of your speech. How does it affect you?

Dr. Pablo Coss 00:20:28
If you're feeling the need to lean in closer so that you can understand what he's saying, that's what it feels like in the room as well. That is a combination of the reduced volume, the poor articulation, and then the rushed or festinating speech pattern.

I should say, many of you living with Parkinson's know, all of these motor symptoms affect people to a different degree. Everybody has some combination of these symptoms to different degrees. Just because I'm describing them here doesn't necessarily mean that they're going to be a part of a given person's Parkinson's disease. It's something to keep in mind.

Dr. Pablo Coss 00:21:06
Going to the walking, of course we usually think of somebody with Parkinson's as having their shoulders stooped forward, not swinging their arms very much, taking small shuffling steps where they don't pick up the foot or the toes and the foot kind of slides along the ground. We'll talk more about it later in the talk, but progressive problems with balance.

Festination, I don't have a video of the festination, but that's a sense that many of my patients describe of feeling like they're speeding up or the top half of their body is getting too far out in front of them, and they're taking these little steps to try to keep up. That might eventually lead them to fall. Then retropulsion, which is if you get knocked backwards, you take a bunch of little steps to try to catch yourself instead of just hopping back.

Dr. Pablo Coss 00:22:03
This is an example of a typical Parkinsonian gait. You can see, of course, she has the rest tremor, but on top of that, she takes these short strides. One foot is barely clearing the other as she walks. She's not picking them up very much, and she's not swinging her arms very much.

One particular problem that some people with Parkinson's run into, usually after years of having the condition, in addition to the walking issues we just described, is this other issue called freezing of gait, or freezing, where the feet feel like they get stuck, frozen or magnetized to the ground, and you have to try multiple times to take that next step, to pick the foot up to take the next step. It tends to happen often around thresholds, like narrow places, doorways or crowded areas. When a person is turning, they tend to freeze, and when they first start to walk after they get up, they tend to freeze a few times.

I understand it's very fatiguing to try to walk with freezing, and, of course, it can affect a person's center of gravity and lead to falls. Here's a man trying to walk down the hallway, and you can see how he's not really taking steps. He's just kind of picking up the feet, trying to get them to take the next step.

Dr. Pablo Coss 00:23:22
We've gone over the major motor symptoms of Parkinson's disease. The question of what underlies those symptoms, what is the brain dysfunction that causes the symptoms, it's good to go over that in a high-level overview so that we can understand the way we treat the symptoms themselves. I won't belabor this too much. Let me see if I can pull up the laser pointer.

The big picture is that whenever you want to produce a voluntary movement, say extend your arm to reach for a cup or write or anything else that you want to do with your arms, a signal from the surface of your brain called the cortex is sent down deep into the brain to a circuit of brain cells that process movement commands and allow your brain to regulate all of the voluntary movements that it makes.

That signal needs to get processed between several clusters of brain cells connected to each other deep inside the brain. If they agree with the brain signal promoting a movement, they will send an excitatory signal back through a part of the brain called the thalamus, back to the cortex, and that will excite the brain in general and produce the movement of the body that wants to be produced. Those clusters of nerve cells that do that processing deep in the brain are called the basal ganglia.

Dr. Pablo Coss 00:25:02
This is a diagram of how the basal ganglia are connected to each other. This is what medical students learn about the connectivity and the physiology of this part of the brain. I'm not going to go into much detail about it here, but suffice it to say that the signal comes from the cortex into the basal ganglia, which is this network here, this square here, into a part of the brain called the striatum, which is kind of the input nucleus for the basal ganglia that takes all of the signals from other parts of the brain for processing.

It goes through one of two pathways. It goes through a pathway that directly connects it to the GPi or goes through a pathway that takes a bit of a detour. If the signal goes through the direct pathway, that excites the brain and produces the movement. If it goes through the indirect pathway, that suppresses the signal and inhibits the movement. Both pathways are necessary in order for your brain to make your body move when you want it to move and stop it from moving when you don't want it to move. Those are regulated by dopamine cells within the striatum. Both pathways are regulated by dopamine signaling, which comes from a different part of the brain called the substantia nigra.

Dr. Pablo Coss 00:26:14
As many of you know, the problem with Parkinson's is the lack of dopamine coming out of the substantia nigra. Let's look at that a little bit in more detail. Here's another way of looking at that part of the brain. I know it's pretty complicated here. I'm going to zoom in to the basal ganglia.

Here's the substantia nigra. It's this pink nucleus here. It's a cluster of brain cells. Here in blue, here's one brain cell sending its connection, its axon, its wire, to the striatum, which is this part here. All of these brain cells that are sending out their little connections, they're producing dopamine and kind of squirting it into the striatum, and that's regulating the movement signal processing within that part of the brain.

Dr. Pablo Coss 00:26:59
Here is a picture of the substantia nigra, what it looks like actually in the brain through a brain slice of a post-mortem brain. This is the midbrain. It's in the brain stem. It's a very small part of the brain. Here, this blue purplish streak is the substantia nigra on one side of the brain and then on the other side of the brain. They're pigmented brain cells, so that's why they have that blue color. You can see, as a person with Parkinson's loses those brain cells, it also loses the pigmentation and you get this pale color. So this top brain is somebody with Parkinson's, and this bottom brain is somebody who didn't have Parkinson's, whose substantia nigra was healthy when they passed away.

Without those cells, you lose that chemical signal, that dopamine, and it makes it so that there is less traffic through the direct pathway, so less voluntary movement. There's also simultaneously more traffic through the indirect pathway. The combination of those two things makes it so the body just doesn't move as quickly and as readily as it's supposed to, and it's more tense when it's not supposed to be. That's really what underlies the rigidity, the bradykinesia and the difficulty walking of Parkinson's disease.

Dr. Pablo Coss 00:28:26
And so our answer to it is to replace the dopamine. That is the main way that we know how to help folks with Parkinson's disease. So we're going to get into treatment here. Before I get into medicines, one of the most important ways of replacing dopamine, and really the most important thing that you can do for yourself as somebody living with Parkinson's, is to exercise. There is a large body of evidence that has been building up over decades of how important and how effective regular moderate- to high-intensity aerobic exercise, really high-intensity aerobic exercise, how much of a difference that makes to folks living with Parkinson's.

It's not just, you know, when I first started treating people with Parkinson's during my fellowship and residency, I would recommend exercise as a long-term thing because the studies show that over years, folks who exercise regularly, their motor symptoms are more stable for a longer period of time than folks who don't exercise regularly. And so I was recommending it as a long-term treatment, but hardly a week goes by where my patients don't tell me that they started exercising and it makes a difference on the day that they exercise. When they exercise in the morning, they feel faster, they have more energy, less fatigue, their tremor's not as bad, and they sleep better. All of the various benefits of exercise are an immediate effect on top of the long-term benefit to the course of the disease.

Usually we're talking about aerobic exercise, like a treadmill, an elliptical, a stationary bike, a bicycle itself if it's safe and you're not going to be at risk of falling on the bike, swimming, really anything that you like to do that has an aerobic component to it, that's going to get you sweating, that's going to get you out of breath, winded a bit, and that's going to get your heart rate up. That's really the best thing that you can do. You should be doing it at least three times a week, if not more, if not every day, ideally.

There are various kinds of exercises that have been studied. Aerobic, we talked about. Strength exercises are also helpful. Balance exercises are very good to avoid falls and strengthen your leg and your core. Stretching exercises are good to help with that uncomfortable tightness or rigidity. Then functional exercises, things like dancing, boxing and martial arts, are really good for you as well.

Dr. Pablo Coss 00:31:03
Moving on from exercise, though, and you definitely need to exercise, that's the most important thing, but we do have these medications that are symptomatic treatments that are very helpful for folks with Parkinson's disease. Chief among them, central to our regimen for anybody living with Parkinson's, is this medication called carbidopa-levodopa, which I'm sure many of you, most of you, are familiar with. It was developed in the 1960s, and yet to this day, it still remains the most effective treatment that will help folks with Parkinson's.

Just for you to understand why it has this complicated name, it is two different medicines. There's the levodopa, and then there's the carbidopa. The levodopa is the active medicine that produces the clinical effect of helping Parkinson's symptoms. It crosses the blood-brain barrier, which is this specialized wall in the lining of the blood vessels within the brain that keeps a lot of stuff from coming into the brain from the blood. But it is able to cross the blood-brain barrier, and once it gets into the brain cells in the substantia nigra that make dopamine, it is metabolized into dopamine to help bolster the dopamine signaling that is going to have the good effect on that basal ganglia circuitry that we talked about.

The carbidopa, by contrast, is not active. It does not cross the blood-brain barrier. It does not get turned into dopamine. It blocks the rest of the body's metabolism of levodopa, which means that more levodopa is able to get into the brain to have its good effect. Also, it is not turned into dopamine by other parts of the body, like the GI tract, which is what causes one of the most common side effects of levodopa, which is nausea. Almost all forms of levodopa come with carbidopa because it has this benefit to the way that the levodopa affects your body.

There are various forms of carbidopa-levodopa. There's an immediate release. The old name for that is Sinemet. That's the one that most people are on when they first start to take the medicine. There's an old form called controlled release with an enteric capsule, which is used sometimes as well. Then there are the newer versions of extended-release carbidopa-levodopa, one that's called Rytary and the newest one is called Crexont, which have some innovations in the capsule and in the little microbeads inside the capsule that carry the medicine, which makes it so that it kicks in strong but also lasts longer than the regular, standard immediate-release medicine.

All of these are taken multiple times a day, unfortunately. The half-life of levodopa is such that you really have to be taking it at least two times a day, but more often three or more times a day, for it to have a continuous effect that doesn't wear off in between doses. We'll look at exactly what effect we expect from levodopa in the next slide.

Dr. Pablo Coss 00:34:14
There are also these continuous infusions. The most recent one that we're using a lot of nowadays is called Vyalev, which is a subcutaneous infusion, this pump that is connected by a thin cannula to a port that puts the medicine just right underneath the skin, so it's not very invasive. It gives a continuous infusion of the medicine 24 hours a day. There's also an inhaled version of levodopa, like an inhaler you would use for asthma, that is used kind of as needed because it kicks in very quickly. When people are feeling like the effect of the medicine is wearing off and they're not feeling good anymore, they can use the inhaler to kind of get a quick kick back in.

The possible side effects of this medicine: nausea is very common, unfortunately, but other side effects are it can make the constipation of Parkinson's worse than it already is, can make people dizzy, can contribute to low blood pressure for some people, and drowsy sometimes. Not usually something that people experience early on, but as the years go on living with Parkinson's, the medicine can contribute to the development of hallucinations, unfortunately, and these other abnormal movements called dyskinesias. We'll talk about that in a minute. It can also make some people a bit impulsive and have difficulty controlling their impulses, which is something that you should be in conversation with your doctor about.

Here is what we expect the levodopa to do, the good effect of the levodopa. You'll remember that first patient that we saw with the rest tremor on the right arm and the right leg. That was him coming off of his medicine, without taking the levodopa for 12 hours. Then we gave him the medicine, and he took it. We waited about an hour in clinic, and then we took this next video.

You can see that his tremor has gone away, both of the arm and the leg. We'll wait for him to do something with the other arm to just make sure that it's actually gone. Yeah, that tremor has gotten a lot better.

Dr. Pablo Coss 00:36:13
Now, we'll move on to this other patient. Similarly, this other patient came to the clinic in the morning without taking his first dose of the medicine. We took this video of him with the medicine worn off. Here, he never has much of a tremor, even without the medicine, but what you can see is, again, the smallness of his movements and the slowness of his movements there in the fingertips, here in the hand opening, the hand which really doesn't open very much, especially on that left side. If we could feel the tone of his arms and legs, we could probably feel that he's fairly rigid.

Now we're having him flip his hand up and down, and you can see there, again, the hand doesn't really go all the way up or all the way down. There's a reduced amplitude of that movement. Here we're having him tap his toes, or he will in a second. That right foot taps pretty good, but the left foot, you'll see, doesn't really lift very much off the ground. Now he's going to try with the left. Yeah, it gets kind of stuck. It doesn't want to come up very much.

Now we see him one hour after he took his medicine on the same day, just about an hour after that first video was taken. This is with the levodopa now kicked in. The blurring, I'm sorry, gets in the way a little bit of the video there, but the finger movements are faster than they were before. They're still kind of small, but now let's look at the hand movements. They're much bigger. It's not getting small as quickly as it was before. It's staying big, big stretching of the fingers. Similarly here, he's able to stretch them wide, whereas he wasn't able to before.

That left hand now is going to come up a lot more than it was before. It has a much bigger amplitude there of the rotation. Let's look at him tap his feet. He's also just more active in the chair. He's spontaneously moving more. The left foot also taps bigger. Does it get stuck as much?

Dr. Pablo Coss 00:38:44
I almost forgot to show on the off video. Let's watch him try to stand up. We've asked him to stand up. He's trying. He's giving it a good try there. He's going to tell us that he's not really able to on his own. So one of our nurses is going to come and help him. A single musical note plays. Now let's watch him stand after he's taken his medicine. We've asked him to stand up, and he stands up easily.

So that's what we want to see. That's why levodopa is so helpful in treating the motor symptoms of Parkinson's disease, because it really makes a big difference to the tremor, to the stiffness, to the bradykinesia, so that people can move easier and feel like they have more energy and can get things done faster and walk better and all that. If that was all there was to treating Parkinson's, and everybody enjoyed the benefits of the levodopa forever, then it would be a lot more manageable of a condition. But the problem is that as the years go on, we tend to come into a period of complications of the medicine, what we call motor fluctuations.

Here we have the textbook progression of Parkinson's disease over years. Again, I want to caution people looking at this. This is not the way that it is for everybody with Parkinson's disease. Many people have a very different course through the years of the condition than what this shows. So don't look at this and think, oh, and start the clock on these numbers, because you've got to take the condition day by day. There's a lot of variability.

Usually, most people may start to have these motor fluctuations in years three to five, in which the levodopa, the good effect that we just saw in that video, starts to wear off sooner than it used to after each dose. So if the effect of the levodopa used to last six hours, after a few years it may only last five hours or four hours. If you were only taking it two or three times a day at first, you may have to start taking it more frequently to try to pave over those periods of wearing off. Some folks might fluctuate between feeling on and feeling off throughout the day, depending on their dosing schedule.

Dr. Pablo Coss 00:41:11
On top of that, another side effect of the medicine that starts to creep in during that period is what we call dyskinesias, which are these other involuntary movements that are entirely a side effect of the medication. Setting that aside, we'll talk about this a little more at the end, many folks start to struggle more and more with walking and balance and the freezing that we talked about. So we're going to talk a little bit about what we do about those things.

First to say, this is an example of what dyskinesias look like in folks with Parkinson's disease. They can be many things for many people. Some people develop kind of a writhing movement or a wiggling movement or kind of a fidgeting of their arms and legs or their head. Some people rock side to side or back and forth when they're standing. Some people, it looks more like a dancing movement or a posturing movement, almost like a dystonia. It can affect any body part or the trunk or various body parts together. It's usually what we call a peak-dose side effect of the levodopa.

So when the levodopa is at its strongest concentration within your system, about an hour after you take the medicine, an hour to two or three hours, that's when the dyskinesias rear their heads. Then they kind of go away as the effect of the medicine is subsiding. Here's what that looks like. I won't show you the video where we see how much of a difference the levodopa makes to this gentleman's walking. It makes a huge difference. It takes away the freezing and the stutter stepping and all that. Suffice it to say that these wiggling movements of his head, that you can see through the blur effect there, and of his legs and of his trunk, kind of a side-to-side rocking, these are dyskinesias, levodopa-induced dyskinesias.

It depends on the severity of them and what body parts they affect and a person's lifestyle exactly how disabling or uncomfortable these dyskinesias are. I certainly have a lot of patients who have mild dyskinesias where they don't even notice it themselves, and it's just me or their family who picks them up when we're watching them do things. But then again, if it gets severe enough, and if it's getting in the way of a particular hobby or work, they can themselves be a very disabling part of the condition. If they stop taking their levodopa, the dyskinesias will go away, but then they will be off. So it becomes a balance of enough dose to help their symptoms, but not so much to cause the dyskinesias. That's where our advanced treatments come in.

Dr. Pablo Coss 00:44:10
I'm not going to spend very much time on this, but suffice it to say that there are various medications that are considered adjunctive treatments. I have a list here of the most commonly used ones. Suffice it to say that, in general, they are used in addition to levodopa to improve the duration and the effect of the levodopa, kind of as an additive, to reduce the amount of off periods when a person starts to wear off with the levodopa.

Some of these are used on their own. I won't get into that very much. When the symptoms of Parkinson's are mild at the beginning of the condition, in the first few years of the condition, none of these on their own are as effective as levodopa. They don't help as much as levodopa, but when a person's symptoms are mild, they may help enough that they can get by. But eventually, everybody with Parkinson's really should be on carbidopa-levodopa despite the complications that we've talked about so far.

The problem with adding more of these medicines to somebody who is already taking levodopa is that they are going to contribute to the side effects of levodopa. They will also contribute to dyskinesias. They may contribute to low blood pressure, to hallucinations, on top of the levodopa. The only one, just to point one out here, that shouldn't contribute to dyskinesias is amantadine. Amantadine is often used actually to suppress dyskinesias. It's unique among our Parkinson's medications in that it reduces the severity of dyskinesias caused by the levodopa. Oftentimes many people will be on carbidopa-levodopa and amantadine, and oftentimes the amantadine is used to suppress the dyskinesias of levodopa.

Dr. Pablo Coss 00:46:00
So what to do at the point where the motor fluctuations, the wearing off and the dyskinesias are becoming a major problem? We can't really add more medicines because that'll make the dyskinesias worse. We can't really lower the dose of the levodopa any further because then you'll feel more and more off throughout the day. So we're kind of stuck between this rock and a hard place when it comes to medications. That's where these surgical and more advanced treatments for Parkinson's come in, like deep brain stimulation.

Deep brain stimulation is a procedure that is done very, very, very commonly now. It's part of the standard of care for folks with Parkinson's disease in the U.S. and across the world. Any movement disorder center uses deep brain stimulation a lot to help folks with Parkinson's disease. It's FDA approved for the treatment of Parkinson's disease, tremor and motor fluctuations. It's also used for other movement disorders, essential tremor and generalized dystonias.

Specifically when we offer it to folks with Parkinson's, we have three main goals, three things that it's going to accomplish. We expect it to improve the motor symptoms of Parkinson's much the same way that levodopa does, with some caveats to that. We expect it to reduce the motor fluctuations, so to reduce the off periods, because it's a technology, a treatment that is going to be working consistently 24 hours a day without kicking in or wearing off the way that levodopa does. It's going to reduce the medication burden. Most people can reduce the levels of their doses of their medicines and come off of some of the extra medicines once they have a deep brain stimulator.

What a deep brain stimulator specifically is, is a set of thin wires that are implanted surgically into the brain, deep into the brain, into that same part of the brain that we called the basal ganglia that I showed you earlier, through small holes in the skull that are made by a neurosurgeon. Usually, most people with Parkinson's will have a wire in each hemisphere, on each side of the brain, left and right, to help the symptoms on both sides of the body. The wires come out through these caps in the skull, and then on the outside, they are tunneled underneath the skin, so there are no wires poking out of your head. People usually can't tell that you have one of these.

Dr. Pablo Coss 00:48:28
They go behind the ear, down the neck, and then they connect to a generator, a pulse generator, a battery that is implanted in the chest underneath the skin, much like somebody with a cardiac pacemaker would have their pacemaker on their chest. Very similarly, except for the wires go up the head and into the brain.

Here you see, in cross-section of the brain, the wire going through the white matter, the brain tissue here, and then the tip of the wire ending at the globus pallidus, which is one of the clusters of brain cells in the basal ganglia. We also sometimes put it into a different part of the brain called the subthalamic nucleus, which is also part of that same circuit. So there's some nuance about why we might do the globus pallidus for one person and the subthalamic nucleus for another person, but suffice it to say that stimulating both clusters of brain cells produces a very good effect on the motor symptoms of Parkinson's.

This is a neurosurgical procedure. So while it is very, very helpful and it makes a big positive difference to folks with Parkinson's, there are possible side effects, risks to the procedure. Like any kind of invasive procedure, there is a risk of hemorrhage. In this case, it would be within the brain, and that can be dangerous, but it's fairly rare. It's 0.5 to 2% of people who have a hemorrhage from the procedure. Then there's similarly a small risk of infection, which might mean that we need to take the device out.

There are possible side effects that are due to the stimulation itself. For some people, it may make their arm tingle, or it might cause a contraction, an involuntary contraction of a muscle, or affect a person's cognitive or mood symptoms. That kind of side effect is stimulation-dependent. There's a lot of programming that goes into making a deep brain stimulator work well. By programming it in a different way, changing the settings of the stimulation, we can often make these side effects go away and tinker with the settings until we get it working well without any of these kinds of side effects.

Dr. Pablo Coss 00:50:47
The way the DBS works, again, here we have the cap and the skull and the wire going into the brain and ending, in this case, in the subthalamic nucleus. Here we have a blown-up diagram of the tip of the wire. It has these electrodes on it. We activate individual electrodes. In this case, we're activating electrode one and electrode two. You can imagine that these are all of the brain cells connected in the tissue around the wire, even though it's not shown in this picture.

It's shown over here, actually. Here's one side of the wire, really, really zoomed up. Here are all the different kinds of brain cells in the wire's vicinity. The wire, the active electrodes create an electric field, which is depicted in this translucent blue sphere. That's the amount of tissue that is being subjected to that electric field. It changes the electric firing properties, the electric signaling properties of the brain cells in that vicinity. It snaps them out of these abnormal brain cell rhythms, these signaling rhythms that are because of the dysregulation of the lack of dopamine.

It snaps them out of those rhythms and puts them more into a normal, healthy firing rhythm. That produces this effect on the larger movement networks of the brain that produces a symptomatic benefit of the stimulator, much like the symptomatic benefit of carbidopa-levodopa, of replacing dopamine. So this is not, to be clear, to clarify a common misconception, this is not doing anything to your brain's levels of dopamine. This is only simulating the effect of the dopamine on the downstream networks with an electric signal instead of a chemical signal.

Dr. Pablo Coss 00:52:35
Here is a patient with Parkinson's disease before and after DBS. Actually, in both videos it's on the same day, but this is with the settings on the DBS turned off. So this is his symptoms without the effect of the DBS. You can see how tremulous he is, how much of a rest tremor he has there. Not just the rest tremor, but you can see even when he picks his arms up how much of a postural tremor he has in both his arms and the rest tremor in the legs. Here he is with the DBS on.

This effect happens within seconds to minutes of turning the DBS on and to the right setting, the optimum setting. You can see now he's not trembling at all, or only very mildly in one of his hands. So that's the effect of DBS, much like what we see with the levodopa on and off videos.

Here's another quick one showing how the DBS can help the walking. Here's a patient struggling with short steps, not swinging his arms very much, getting a little frozen here as he tries to turn around. His feet get kind of stuck on the turn, and he's moving very slowly. Now here he is with the DBS effect. After turning on the DBS, you can see how much wider his steps are, how much faster, how much he's swinging his arms more, and how he doesn't freeze anymore when he turns. So big, a big, big success there for DBS. It's going to make a big difference to his day-to-day activities.

One other advanced treatment that I want to talk to you about, I know I'm getting short on time here, is the focused ultrasound technique. This is newer than deep brain stimulation. Deep brain stimulation has been around for about 30 years. This has only been around for about 10 to 15 years. This is very exciting because it is, in a way, a non-invasive procedure. It's at least an incisionless procedure in which a beam of ultrasound waves is emitted into the brain. It penetrates through the skin, through the skull, through the outer layers of the brain, without any kind of hole in the skull or incision in the skin. It just penetrates through the tissues harmlessly.

The ultrasound waves focus on a small part of the brain, in the similar network of brain cells that we've been talking about. In that little cluster of brain cells where the ultrasound beams focus, it causes heat in the tissue and burns it. It cauterizes that tissue. It essentially ablates that cluster of brain cells to shut down their abnormal signaling. This has been around for about 10 years specifically to help the tremor of Parkinson's and also essential tremor.

It is now, just in the last year or so, approved and being used more in a slightly different part of the brain to help the other symptoms of Parkinson's in addition to the tremor, like bradykinesia and rigidity. It's a one-time procedure. You go in, you get the procedure done on one day, and then you go home. The effects should be long-lasting, theoretically should last years, to help the symptoms of Parkinson's. So this is definitely an alternative for a lot of people to the deep brain stimulator.

But there is a complexity and a nuance for any given person, depending on the risk profile for complications of either procedure and what we want to get out of the procedure, what the main symptoms are that we want to tackle, whether or not they're more benefited by a focused ultrasound treatment or by the deep brain stimulator. Should I keep going a little bit, or should I stop here?

Dr. James Beck 00:56:38
I think now might be a good time to stop, just to give us some time for some questions, Dr. Coss, if you don't mind. I think that's really fantastic. It's really great to see some of these videos that you presented because it really is hard to describe. As they say, a picture's worth a thousand words, and I guess a movie's maybe worth a million. So just really being able to see that, I think, is really helpful for the audience to get a basis for that as coming in.

Thank you very much for the presentation so far. I just want to remind our audience before we jump into questions, just know that our team is working to organize the questions in the back end and feed them to me so I can talk to Dr. Coss about them, and also get a variety of questions that come in. We're really going to focus on those that are going to be very directed toward our conversation today. So thank you for those. We have a helpline who can help more broadly as part of the process.

I think, when I think about this, Dr. Coss, you showed some symptoms of various people and individuals as part of this process. Tremor is often viewed as one of the key symptoms in Parkinson's disease. But is it the case that everyone develops tremor with Parkinson's disease?

Dr. Pablo Coss 00:57:49
No. Even though it's kind of what we all think of when we think of somebody with Parkinson's, somebody shaking, it's only about 70% of people with Parkinson's who have a tremor associated with their Parkinson's. For some of them, they may have the tremor, but it's kind of a relatively minor symptom of their condition, and they may struggle more with the slowness and the stiffness and the walking difficulties. So no, it is not a necessary part of Parkinson's disease for a lot of people. It's also not strictly speaking necessary for the diagnosis to have a tremor.

The most fundamental part that is required for the diagnosis is that slowing down, that bradykinesia of the movements. You saw there in various videos how we're always asking people to tap their fingers and open and close their hands. With all of those, we're always looking for that slowing and that decrement in how wide the movements are.

Dr. James Beck 00:58:48
I think that's really a good thing to bring up here because, as you can appreciate, you probably know very well professionally, a lot of people sometimes struggle getting that diagnosis of Parkinson's disease, or they get diagnosed with PD when they don't. So when is a tremor not a Parkinson's tremor? Is that something that you can briefly touch on just so that people could be aware and maybe query their physicians a bit more if there's some doubt?

Dr. Pablo Coss 00:59:15
Absolutely. You're absolutely right. There's a lot to be said about the accuracy of diagnosing Parkinson's disease and other tests that can be done to try to help with the diagnosis and all that. But Parkinson's specialists try to pride ourselves in our ability to diagnose it clinically based on what the tremor looks like, the other symptoms and what the symptoms patients describe to us are. We try to tell apart tremors based on the way they behave.

Usually, to kind of give an example, the distinction that we're almost always trying to make is between somebody with a Parkinson's tremor and somebody with an essential tremor. A Parkinson's tremor most often has a rest tremor component, so the tremor comes out when the hand or the body part is relaxed, and it's usually to some extent asymmetric. It'll affect one arm more than the other, or one leg more than the other, or just one side by itself, as we saw in the first video. Most of the time, it actually goes away when a person starts to use their hand. So if they have that very classic rest tremor, then we're probably dealing with a Parkinson's tremor.

On the flip side, if somebody has a purely action tremor, which is a tremor that only comes out when the hands are in use and goes away when the hands are relaxed, and if it's very symmetric, if it affects both hands or both sides of the body to almost the same degree or exactly the same degree, and if it affects the head, too. Most Parkinson's tremors don't affect the head. A lot of essential tremors do affect the head. Then we are more likely to call it an essential tremor or one of various other kinds of tremors.

So we do have that ability to discriminate. Most of the time, when we use these kinds of criteria, we're correct and accurate in our diagnosis. Although, there are many people who fall into a gray area where they have some component of rest tremor, some component of action tremor, and in those cases, it may be kind of hard to tell just by looking at the tremor what kind of tremor it is. Then we're also looking at, do they have bradykinesia? Do they have rigidity? That will also kind of sway us one way or the other.

We look at them walk to see if there are walking changes that look like a parkinsonian change. Then we ask them all these other questions that we haven't really talked about today about the non-motor symptoms of Parkinson's. We use that also to support a diagnosis or refute it. When we're really, really not sure for whatever reason, then we rely on these other biomarkers that many people are asked to do, like the DaTscan, that specialized SPECT scan, or nowadays these other tissue-based biomarkers. Here in our clinic, we do the Syn-One skin biopsy quite a bit to try to confirm the diagnosis when clinically it's still in question.

Dr. James Beck 01:02:14
Yeah, those are some really good things to consider. I appreciate that. I think that's a burden all people with Parkinson's disease face. It's generally not a straight line from A to B on getting that diagnosis, but thank you for laying out some of those options as part of it.

Tremors are this visible component of the disease. Some people who are still working have written in and asked about how to manage tremors, like in a speaking situation. How do you advise on that? Is this something where there's a discussion about offering some medications for people who typically get other types of anxiety for speaking? Would that type of work? What do you advise your patients?

Dr. Pablo Coss 01:03:02
Yeah, I think so. Sometimes, when they're very situational tremors, like, I know it's going to come out when I'm stressed out, like speaking publicly or at dinner eating, using my utensils, or some other aspect of a hobby or job performance. Certainly, if we can identify that it's an anxiety-driven tremor in that specific situation, then we do use medicines that can kind of control that anxiety and will also control the tremor. Depending on that medicine, those kinds of medicines, we don't like to rely on those too much.

We'll also use some of the medicines that we borrow from essential tremor. A person may have Parkinson's, but they may have an action tremor that interferes with them holding a microphone or them writing in a high-stress situation. We might give them some propranolol to help kind of relax. It has an anti-anxiety effect and also an anti-tremor effect, and they can potentially even take that as needed. But hopefully, we do a good enough job with the mainstay of the treatments like the levodopa and all that to help, so that it's really quieted down even in those situations.

I feel like if we're having to use kind of as-needed treatments, then we still haven't controlled it well enough with all of these other treatments that we've talked about. But then there are the non-pharmacologic ways. Unfortunately, I wasn't able to get to these because of time. Too many videos. But there are various devices that can help Parkinson's tremor, or an action tremor, I should say, whether it's Parkinson's or not, like a glove, the Readi-Steadi Glove that we recommend for our patients, certain kinds of electronic devices that stimulate the wrist, like the wristband that's been around now for a little while, the Cala, and various kinds of weighted utensils and stuff like that that can help with specific tremors in specific situations so that you can get things done easier without so much shaking.

It's probably best to work with an occupational therapist, and they can sort of go through those nitty-gritty details of the functional use of your hands and where the tremor's getting in the way and what you can do about it. There are neuro occupational therapists that are experienced with helping people with tremor in addition to the medicines that we prescribe in clinic.

Dr. James Beck 01:05:33
That's great to know. I think just even knowing that there are options allows people to bring this up with their clinicians to talk about as a way to move forward on it. Last question about tremors before we've got a bunch of others. As tremors get worse, does it mean that the disease is progressing necessarily? Clearly, some tremors may, as the disease goes from one side to the other side, but as a tremor just becomes more prominent with time, is that disease progression? Or could it just be these stress situations where we're seeing that?

Dr. Pablo Coss 01:06:15
It could certainly be both in different situations. What we usually will say is if your Parkinson's symptoms, be it a tremor or otherwise, suddenly get worse, like from one day to the next or one week to the next, suddenly you're very, very shaky, more so than you have been in a long time, then there's probably something underlying that worsening. Often the usual suspects are an infection like a UTI, a urinary tract infection, or maybe some change in the medicines, or maybe you forgot to take your medicines or something like that, or you've otherwise been sick, dehydrated, et cetera.

When it's a sudden worsening, we're always looking for some other cause that triggered that worsening that's not directly the Parkinson's. But unfortunately, as the years go on, we do consider, when Parkinson's is a progressive disease, that sometimes a worsening of tremor is part of that progression, or maybe a sense that the levodopa isn't helping as much as it used to. Maybe for the first couple of years it had completely stamped out your tremor, and now your tremor is kind of starting to break through again in different situations. Then, in that case, probably on a more long-term course or more gradual course, that would probably signify a progression of the condition and potentially a need for a higher dose of the medicines to help the tremor more again, or these other treatments like we talked about, like the deep brain stimulator or the focused ultrasound.

Dr. James Beck 01:07:42
Thank you for that. When we think about tremors, often it's in the extremities. Some people here described internal tremors, and then you yourself, somewhat related, talked about this issue with dystonia, often in the feet but sometimes in the face. How do you address those? Are internal tremors typically handled with carbidopa-levodopa? With the dystonia that you might see elsewhere outside of the feet, is this where botulinum toxin comes into play?

Dr. Pablo Coss 01:08:16
The internal tremor is an interesting thing. Some folks will say that they feel the tremor on the inside, that kind of an internal sensation of tremor. We look at our medicine options and we decide, maybe is it a component of anxiety that's coming out as a kind of internal sensation of tremor, and we can treat that appropriately. Or with levodopa, that can often help that internal sensation as well, or the other tremor medicines.

But specifically for dystonias, whether they come with a tremor or not, like the woman in the video that I showed, and thank you for reminding me that I should have included botulinum toxin as another treatment option, the video that I showed with the woman whose foot is turning in at the ankle, I do treat her to this day with botulinum toxin injections to the muscles of the lower leg that pull the foot in that way. It helps her quite a bit.

So actually administering botulinum toxin injections, usually Botox or one of the other brand names of the treatment, is a big part of our practice and the way that we help a lot of these dystonic symptoms of Parkinson's disease. Whether we're injecting it into the foot, to the muscles that curl the toes so that they relax and the toes don't curl as much, or whether we inject it into the muscles around the eye or the face that cause that closing of the eyes, what we call blepharospasm. Yeah, we make a lot of use of Botox, and it can be very helpful specifically for dystonic symptoms of Parkinson's.

Just before I came in here to participate in this webinar, I was doing Botox injections around the eye that have been really helpful for one of my Parkinson's patients to keep their eyes open more consistently. Before, he used to have to kind of open them manually with his hands, and he hasn't had to do that in a long time because of the Botox.

Dr. James Beck 01:10:12
Oh, that's fabulous. I'm sure that really improves quality of life, to just be able to see consistently as you navigate around in the world. You focused a fair bit on different types of treatment options. We just talked about botulinum toxin. One of the new ones out there is the subcutaneous pump Vyalev, I think that's how it's pronounced. Has it been around long enough where you've really been able to see, in your clinical experience, a real impact on controlling some of the tremors, the dyskinesias and things as far as that goes?

Dr. Pablo Coss 01:10:45
Absolutely, yeah. I think it's only been on the market for, time flies for me, so I always forget, about a year maybe. Even before that, we were part of the clinical trial, and we were getting some experience using it as well. But just in that short amount of time, many of my patients have it. Usually, they are patients who have had DBS for a number of years, and the DBS has made a big difference, but it hasn't 100% erased the dyskinesias and the fluctuations. Then we turn to the Vyalev pump.

The Vyalev pump, like I said, is a device that you carry with you 24 hours a day, usually in a little satchel or belt or a vest. It's attached to the skin through a little tiny plastic cannula, and it's infusing a constant amount of liquid levodopa into your skin. It's getting absorbed into your body 24 hours a day. It really is the best way that we can get somebody a constant level of levodopa in their bloodstream that gets a person out of the dyskinesias every time the oral dose peaks and then the wearing off every time it wears off before the next dose.

It makes a big, big difference. It really has. Actually, this patient that I injected with the Botox that I was telling you about, he also has one of those, and he was just telling me how much of a difference it's made for him to be able to walk consistently and talk consistently. Before, he was taking his medicines five, six, seven times a day, and even then, was wearing off in between and was really disabled by the difficulty walking more than anything and difficulty speaking. Now he walks and talks like you could hardly tell he has Parkinson's. So amazing. We've had really good experience with the Vyalev pump already on a number of our patients.

But the main issue that people need to know about is sometimes people have skin reactions where the cannula is infusing the medicine into the skin, and so you have to be careful about that. There's a lot of training from nurses and your doctors about how to properly manage the cannula site on the skin and how to move it every couple of days so that it's not building up all in one spot, how to be clean to avoid infections and stuff like that.

Dr. James Beck 01:13:04
I'm sorry, I didn't mean to cut you off.

Dr. Pablo Coss 01:13:07
Well, I was just going to say, even despite some of those skin issues, it helps most of my patients so much compared to the pills. It gets rid of the need to take the pills frequently throughout the day, which is an achievement on its own. They'll get good about doing the cannula cleaning and upkeep and all that stuff.

Dr. James Beck 01:13:29
That's just even something I hadn't considered, to be able to use in conjunction with DBS as part of normal care and really seeing such tremendous effects.

Dr. Pablo Coss 01:13:43
Many people will think of it as an alternative to DBS, which is not unreasonable. It's trying to accomplish the same thing, which is to get rid of the need for frequent pills and the fluctuations, which is what DBS is trying to do. But my personal opinion is that folks with Parkinson's, if they fluctuate a lot as the years go on, they're going to be benefited by having both: having the DBS producing the electric signaling that helps the symptoms, and then the subcutaneous pump that gives you a continuous chemical signal to help your symptoms.

Dr. James Beck 01:14:14
Yeah, that's interesting. Now, when you talk about DBS and other therapies, can it be used in conjunction with focused ultrasound, one or the other? Or if you go down that focused ultrasound pathway, are you locked into that?

Dr. Pablo Coss 01:14:27
No, you can do the focused ultrasound, and if it works well and it accomplishes the goals and you don't need any other advanced treatments, that's great. But if it works for a while and then maybe the disease progresses as the years go on and you need one of the other treatments, you can still get a DBS. You can still do the Vyalev pump. What you can't do is get the DBS and then try to do the focused ultrasound while the DBS is in your brain. Maybe potentially you can do it, but it's not done very often, and there are a lot of considerations that might make it not a good idea.

Dr. James Beck 01:15:01
Yeah, you don't want to heat up the wrong thing if it's blocking your way. Well, Dr. Coss, I really appreciate your time and your answers to questions as they come in. I think we're coming up to the end of our time. We've decided for the spring to make our expert briefings just a touch longer, so thank you very much for hanging in there with us and for your time today. This is a wonderful briefing on tremor, shakes and everything in between. If you want to see the full deck that Dr. Coss wasn't able to present, just know that we will be including that as part of an email that'll go out, where you can download that as part of the process.

Dr. Coss, again, thank you as part of that process. We had lots of questions come in. If you don't have an opportunity to get a response, please know that we have our helpline, Helpline@Parkinson.org, or also 1-800-4PD-INFO, which is a wonderful resource. We've got tremendous colleagues there who are really helpful at handling and answering a lot of different questions as part of the process.

Our next expert briefing is going to be hosted on April 8. We've got one down right now and are looking forward to what's going to be Inside the Science: Parkinson's Research Today. That should be a really exciting topic. I'm looking forward to that.

Also keep in mind that this is not just the complete list of our PD Health at Home series. We have a lot of things that are available on a weekly basis, Mindful Mondays, Fitness Fridays, and we even have programs in Spanish if that's your preferred language or if you have family members who are more comfortable in that as part of the process. The key thing is we're here for you. Feel free to reach out with your questions, regardless of what they may be, and know that we have people ready to respond as part of the process.

Dr. James Beck 01:16:51
Now, before you go, I just wanted to remind everyone that this is the Zoom world where it'll go black, but what will happen on your browser should be a briefing survey that comes up. Please fill out that survey. We use that tremendously and rely upon your feedback to ensure that what we're doing remains aligned with your needs and priorities. We also use it to provide feedback to our speakers. We've seen some that come in very recently, and they've really enjoyed what Dr. Coss had to say. So I appreciate those providing that kind of feedback.

We also take constructive criticism, too. We always want to figure out how to improve. If you have any feedback, please feel free to leave it for us, and we will do our best to incorporate it to ensure that we're better next time. There's always opportunity to improve as part of the process. Until April, I wish everyone a good spring, and thank you very much for your time. We'll talk again soon.