Dan Keller 0:07

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.

Most people with Parkinson's disease take medications to alleviate symptoms, but along with every drug comes the possibility of adverse effects, also commonly called side effects. These unwanted side effects to medications can be minor or more troublesome, such as dyskinesias and hallucinations, so most therapies are a balance, minimizing the downsides of a drug to increase their tolerability, making people more likely to take them, and thus increasing their benefits. The good news is that side effects do not affect everyone taking a certain drug, and moreover, they can often be minimized or alleviated by working with your healthcare team.

I spoke with neurologist Dr. Irene Richard of the University of Rochester, who described various approaches to alleviate side effects of drugs. A key aspect is to be aware of what may occur when starting a new drug, reporting problems when they do occur, and having reasonable expectations for the benefits of a drug, as well as its downsides. When people go on anti-Parkinson drugs, what are some reasonable expectations in terms of what symptoms they may alleviate and what they don't attack?

Dr. Irene Richard 2:03

I think that it's important, like you said, to have realistic expectations of what symptoms may improve, and of course, between you and your physician, you have to have an understanding of what medication might be helpful for what symptoms. So the way that we look at this, we might call them dopa-responsive symptoms versus non-dopa-responsive symptoms. So if you think about early on in Parkinson's disease, when you think about what core symptoms are, we usually think of bradykinesia, right? So a slowness of movement. In reality, people will have both slowness as well as a reduction in kind of the amplitude, so the movements will be smaller, as well as a worsening in the rhythm. What happens is that normally dopamine would control our movements such that, you know, they were quick and they were big and they were rhythmic.

The control of movements and dexterity is one of the core features of Parkinson's disease that does respond very well to medications that improve the function of dopamine, as does what we would refer to as rigidity. Even though someone may or may not be aware of the fact that they have rigidity, both rigidity and bradykinesia do respond relatively reliably to medications that improve dopamine. On the other hand, the third core feature of Parkinson's disease that people will often have early on would be a tremor. It's usually a resting tremor present when they're not doing anything, and it tends to go away or improve as you move the limb, but tremor is something that is variably responsive to our dopaminergic medications. So some people will get a good response to a medicine that improves dopamine function, some people will get a modest response, some people will get a little response, and then there are people whose tremor does not respond at all to any of our dopaminergic medications. And if you look at the cardinal features, the two things that get better reliably are bradykinesia and rigidity, and tremor is a little bit hit-or-miss, and you don't know until you try, and you may have to go to higher dosages.

On the other hand, there are symptoms that people will often get with Parkinson's disease that not only don't respond to dopaminergic medications, but, you know, they may not respond to any medications, and those might include problems with balance and problems with thinking or cognition, for example.

Dan Keller 4:41

Let's talk about adverse effects, or as people more commonly call them, side effects of some drugs used for Parkinson's disease. What side effects are often encountered with which kinds of drugs?

Dr. Irene Richard 4:54

In general, the majority of medications that we use to treat the motor symptoms of Parkinson's disease, they increase the function of dopamine, because that's what's missing. Anything that increases the function of dopamine will tell you to improve movement, but it also runs the risk of causing what we call mental status changes, so that could be confusion or visual hallucinations, for example, and really those can happen with any of the medications we use to treat the motor features, although some people are more vulnerable to those side effects than others. In the same vein, certain medications are usually a little bit worse than others, you know, in their ability to cause that.

So if we were going to break down classes of medications, what I would say is that the medication that's the most effective, and that we know has been around for a long time, and is the most likely to help with Parkinson's motor symptoms, that's the medication we often refer to as Sinemet, carbidopa-levodopa. The side effects of Sinemet are actually relatively mild. People can get nauseated, but usually by starting at a very low dose and going up very gradually, we can prevent or minimize nausea. Another side effect might be lightheadedness when you first stand up, and that's caused by a combination of the fact that blood pressure control is disordered in Parkinson's itself, and then the medications like Sinemet kind of contribute to that, so those are kind of the short-term side effects if you were to look at Sinemet, or carbidopa-levodopa.

Another class of medications, which are called the dopamine agonists—basically, the brain receptors think that they're dopamine, even though they're not, and these are medications like pramipexole, the brand name of which was Mirapex, or ropinirole, Requip, rotigotine, or the Neupro patch. So those medications, they can help motor symptoms, not to the extent that the carbidopa-levodopa would, but they can. So the most common side effects that they have that we usually are concerned about: they can be sedating, so they can make people sleepy, and sometimes that sleepiness can come on suddenly. Some people have referred to that as sleep attacks, which is obviously a big concern—for example, somebody's driving and they may not have much warning before they fall asleep. Another is edema, and that's actually swelling of the extremities. It's usually swelling in the legs. In and of itself, that's not particularly dangerous, but it's something of which to be aware, so that you don't go, let's say, pursuing an entire workup with your primary care doctor. They are probably a little more likely than levodopa to cause visual hallucinations in people who are vulnerable to them, and that tends to be people who are older or who have cognitive impairment.

And then the other really important potential side effect of any dopaminergic medication, but probably of most concern, or most commonly with the dopamine agonists, we refer to them as impulse control disorders. And this is basically compulsive behavior, so people can't control their impulse and will do things that they ordinarily wouldn't, or they don't necessarily want to. And the best example I would say is what we refer to as pathological gambling. And there are people who have never gambled in their life, and they start a medication like a dopamine agonist, and they've gambled away their life savings. And when the drugs first came out, we didn't realize that association, and once that association was recognized, it's become really important to let people know about that, because it doesn't seem intuitive that one would think this medication taken for my Parkinson's disease is making me gamble, but the reality is that it can. So we always like to kind of warn people ahead of time just to be aware of it. It doesn't happen to everybody. Younger people tend to be a little bit more prone to it, and certainly people who have either a personal or family history of impulse control disorders or substance abuse, but plenty of people who develop it really don't have a personal or family history of such things. So, you know, that would be with the agonists.

Another medication that we use is called amantadine. It's kind of in a class of its own because it does a lot of different things. It can help the underlying symptoms of Parkinson's. It can also help reduce the dyskinesias that people get over time when they take dopaminergic medications. So those are those wiggly, wriggly movements that people have, and amantadine can not only help the underlying things like the slowness and the tremor, it can also help reduce those dyskinesias. The side effects of amantadine are similar to the others in that it can cause confusion or hallucinations, but in addition, it can cause the swelling in the legs, as well as a rash—a very distinct rash, which is a kind of lacy-patterned reddish rash on the legs. It's not dangerous, but it is something that can be associated with amantadine.

And then probably of most concern with amantadine are what we refer to as anticholinergic effects, and those are basically things that, for the most part, people with Parkinson's already had problems with, so they can get even worse. That would be things such as confusion, problems with, let's say, being forgetful, dry mouth, constipation, difficulty starting to urinate—all of those things, again, we refer to as anticholinergic side effects, and those can be seen with amantadine. In addition, amantadine can sometimes cause insomnia. And the one other thing to keep in mind with amantadine is that, unlike the rest of our medications, it's cleared by the kidneys. If somebody's kidneys, let's say, aren't really working perfectly well—if somebody has some difficulty with their kidney function—the amantadine will build up in their system, so they'll be more prone to getting side effects of it.

Sometimes we add medications, we mix medications. People are aware of that one class of medications called the MAO inhibitors. They decrease the amount of dopamine that's broken down in the brain and therefore increase the available dopamine, and sometimes they're added on to existing medications just to kind of prolong the effect or kind of give a little extra benefit. Those really have similar side effects to the others that I talked about in their potential to cause hallucinations, also their potential to cause a drop in blood pressure when first standing up. And the one other thing I guess I'd mention about them is people will get warnings along with their—when they get their prescription filled, or even the doctor, a warning might pop up as they're making the prescription—that you don't want to combine those with some other medications, including commonly prescribed antidepressant medications. We prescribe antidepressants along with those MAO inhibitors all the time. We just let the pharmacist know, "Yes, we're aware of it," but that's a very commonly prescribed combination.

Dan Keller 12:14

What can be done? Can you just list some things that help to mitigate side effects in general? What sort of approaches do neurologists take to help people overcome them, or even hopefully eliminate them entirely for a certain kind of drug?

Dr. Irene Richard 12:31

The first thing is just, first of all, to establish for sure that it is a side effect of the medicine. It's usually pretty obvious, though not always, so you hopefully only make one change at a time, so you know what's causing what. But if it does appear as though you're having a side effect related to a drug that you started, one thing you might do, it depends, first of all, how serious the side effect is. Right now, for example, if you were to start Sinemet, or carbidopa-levodopa, and you got nauseated, one approach would be, "Okay, let's back down, let's start at an even lower dose, and go up even more slowly to let your body get used to it," because even though you might not have been able to tolerate a rapid increase, maybe if your body gets used to it over time, you will be able to tolerate it, and actually that's usually the case. Another possibility would be that you just have to lower the dosage, you know. Everybody is different.

I would say that one important thing to think about, I'd mentioned to you that all of these medications can potentially contribute to this drop in blood pressure when you first stand up. That's called orthostatic hypotension, and that's actually a pretty big problem, because people stand up and they get dizzy, their blood pressure drops, and all of our medications that I just mentioned, except for amantadine, tend to do that. We will often tell people, "Okay, well, get up slowly, make sure you're well hydrated, you know, add salt to your diet." There are a lot of things that you can do that are, you know, quote conservative measures, but the other really important thing is to look at your other medications that you're on, perhaps for different indications and prescribed by a different doctor.

And the most common ones are medications that you have been taking, for example, for high blood pressure. So you might have had a history of high blood pressure, be on a medication for high blood pressure, and all of a sudden you get Parkinson's disease, and then, particularly when you take a medication to treat it, you no longer need that high blood pressure medicine, and in fact it can worsen that phenomenon of the blood pressure dropping. And another example of a medication that can do the same thing, there are certain medications that are used, particularly in men who have prostate problems and initiating urination—Flomax is an example—that can also cause that orthostatic hypotension. So you kind of have to look and make sure that you're not having an additive effect of two different medications, and in some cases you may just have to make a choice of, you know, well, if you really need the other medication and your conservative measures don't work, you're going to have to either stop the Parkinson's medication or you can treat a side effect with another medication. It's not what we like to do. We don't like to keep adding more medications, but there are medications that we do use, not uncommonly in Parkinson's disease, to increase blood pressure. So depending on the side effect, depending on the medication, there are a lot of different ways that we can kind of deal with the side effects. And the other thing to keep in mind is that there are some side effects that are problematic and, you know, very difficult to just live with, and we really need to do something. There are others that it's important that you notice them, so that you and your doctor are aware that it is a side effect, but it doesn't necessarily mean that you need to do anything differently.

Dan Keller 15:49

I suppose one key to this thing is to be able to work with your neurologist to alert them to these kinds of side effects. Do neurologists typically go beyond just saying, "Are you having any problems?" but saying, "Oh, I see you're on XYZ medication. Have you noticed this, or this, or is it troublesome?"

Dr. Irene Richard 16:10

Yeah, no, that's a good point. What I would say is that generally, when we first prescribe a medication, we would tell people what the most common side effects are, what to look for. I mean, obviously, if you read a package insert, it contains everything, so we don't recommend doing that. But, for example, with Sinemet, when we prescribe that, I'll say, "You know, it can cause a little bit of nausea, that's why we go slow. It can cause some lightheadedness when you first stand up, that's why you want to take your time." On the other hand, with dopamine agonists, it's really important that we warn people about the potential for both the swelling in the extremities, as well as this impulse control disorder, because people might never put the two together or even think that it's a side effect.

So, from a patient standpoint, it's always helpful to ask what potential side effects might I experience with this medication, and it's important from the neurologist's aspect to be proactive and tell patients, you know, you don't want to scare somebody, but you can tell them, "Not everybody gets this, but potential side effects, ones that we see commonly, are X, Y, and Z." I'd say that most neurologists tend to be rather conservative, and that we'll start at a low dose and we'll go up gradually. It depends upon the neurologist, but we'll tell people, "Why don't you contact us when you get to, let's say, a certain dosage, and then we'll let you know what to do from there." In other words, let's say you get up to one tablet three times a day of Sinemet. If that's worked and you're tolerating it, you could just stay there. On the other hand, if you're tolerating it, but it didn't really help, let's say your dexterity or tremor, we may then say, "Okay, let's keep going up, then."

But it's certainly important if you are on a medication, particularly if it's a recently started medication, and you are experiencing a new symptom, it's important to bring it up to your neurologist, first of all, just so that they know, and they may be able to determine, "Oh, well, you know, that might be a side effect of this medication." Or even if it's not a side effect of this medication, maybe it means something else is going on that you should get checked out with your primary care doctor. So I do think that kind of being vigilant, but not necessarily overly vigilant, but on the other hand, if you're having symptoms, particularly something new, it never hurts to mention it.

Dan Keller 18:28

Is there any sort of nutshell message to patients and caregivers in this area?

Dr. Irene Richard 18:35

I think that when it comes to Parkinson's disease, it's good to understand that the medications we use are used to treat symptoms. I think one thing that I really do want to get out there, because I think it's such a prominent misconception, still seems as though people are very hesitant to start Sinemet or carbidopa-levodopa. We've really come full circle, and over the past 10 to 15 years, we've done extensive studies, and while it was a concern initially about should we wait to start Sinemet, the majority of Parkinson's disease specialists have come to the conclusion that when somebody is having symptoms that would respond to Sinemet and those symptoms are impacting their quality of life, they should not hesitate to start carbidopa-levodopa, because it will improve their function, it will improve their quality of life.

And even things like exercising that we know is really helpful for Parkinson's disease—in fact, it may even slow the disease progression, we know it slows emotional decline—Sinemet, for example, carbidopa-levodopa, there's even been studies that show that people get more out of their exercise when they're on Sinemet than when they're not. And eventually, because everybody ends up being on Sinemet for the most part, what you have to do is look a few years down the road and realize everybody looks the same at that point. In other words, it doesn't change the ultimate outcome, but what it does do is, if you start it sooner, in retrospect, you probably will have had better functioning, better quality of life for a longer period of time than had you tried to hold out on starting it. That's just one real important message, because I just see it so commonly.

Dan Keller 20:16

Very good, I appreciate it. I'm sure this will all be helpful to our listeners. Thanks.

And for more information on side effects of drugs used to treat PD, there's a wealth of information on our website at parkinson.org. Just search for side effects. While a lot of the information relates specifically to PD drugs, much of the advice and therapeutic approaches are also useful regarding medications for many other conditions, since side effects of drugs are a very common phenomenon. An expert briefing by Hubert Fernandez gives a good overview of many of the drugs used to treat PD, their efficacy, and side effects. Several fact sheets, along with our medications publication, cover many of the classes of drugs, including levodopa-carbidopa, dopamine agonists, amantadine, monoamine oxidase inhibitors, and more. You can find these materials in our PD library at parkinson.org/library.

You may also find useful information by revisiting past podcasts in this series. Emily Perrin covered pharmacy challenges in PD in a podcast with that title. In back-to-back episodes, Joe Quinn and Martha Nance discussed hallucinations. One podcast is titled Do You See What I See: Hallucinations and Parkinson's Disease, and the other is Hallucinations and Delusions in Parkinson's. Mark Groves addressed impulse control disorders in an episode called Clinical Issues Behind Impulse Control Disorders, and coming up in 2021 we will feature Greg Pontone giving some tips on how to talk to your doctor about impulse control disorders.

If you have questions about today's topic, or anything else having to do with Parkinson's, our information specialists can provide answers in English or Spanish. You can reach them at 1-800-4PD-INFO. News and updates about future events and resources are available by joining our email list at the bottom of our website's homepage. If you want to leave feedback on this podcast or any other subject, you can do it at parkinson.org/feedback. If you enjoyed this podcast, be sure to subscribe and rate and review the series on Apple Podcasts or wherever you get your podcasts.

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 other week. Until 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.

Dr. Irene H. Richard is Professor of Neurology with a secondary appointment in Psychiatry at the University of Rochester in Rochester, NY. After graduating from Cornell University in 1987 and receiving her MD from the Yale University School of Medicine in1991, Dr. Richard completed neurology residency at the University of Rochester in 1995, followed by NIH-funded fellowship training in Movement Disorders and Experimental Therapeutics in 1997. She joined the faculty of the University of Rochester in 1997. Dr. Richard provides neurological care for patients with Parkinson’s disease and related conditions and her clinical research program focuses on the psychiatric aspects of these illnesses. More recently, with support from a PF community grant, she has also been working with her team on efforts to optimize hospitalization for patients with PD. She is the author of numerous scientific articles, editorials and book chapters and has been the recipient of career development awards and research grants, including one from NIH to lead a multi-center clinical trial evaluating the treatment of depression in PD. Dr. Richard is Director of the University of Rochester’s Movement Disorders Fellowship Program, LBDA Research Center of Excellence, and Parkinson Foundation Center of Excellence.

Dan Keller 0:02 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. Shouldn't everyone have access to good medical care, regardless of their gender, race, community, or financial situation? These factors and more can be barriers to accessing health services, creating disparities in care and ultimately in quality and possibly length of life, but another impediment may be just knowing what one needs, what is available, and how to access it.

Dr. Lynda Nwabuobi, a movement disorder specialist at Weill Cornell Medicine in New York, recognized this problem in the communities surrounding Columbia University, where she received her training in movement disorders under a Parkinson's Foundation Movement Disorders Fellowship Award. She recognized that if people did not know about the healthcare services available, they would not be coming to her clinic, so she decided to reach out to underserved communities where they gathered to set the stage. I first asked her if the fellowship award furthered her research on health disparities.

Dr. Lynda Nwabuobi 1:51 Absolutely, I felt very lucky to get this award and to be able to attend Columbia University to do my movement disorders fellowship. I think one of the best things about being there and getting this award is that I was able to get trained at a Parkinson's Foundation Center of Excellence, and I was able to get excellent education. I was around some of the brightest minds in Parkinson's disease, like Dr. Stanley Fahn, and also being a Center of Excellence, it really taught me what it's like to be part of an interdisciplinary team, which is really important in Parkinson's disease care, and that's basically having a team of people, like, you know, like a social worker, a nurse practitioner, speech therapy, physical therapy, the ENT doctor, geriatrician, neurosurgeon, whatever you may have it, and having this group of people who just surround you and all work together to provide you excellent care. So I really learned what it's like to be a part of a team like that, and then also being at that center helped me realize a lot of collaborations with other Parkinson's disease community organizations, and really helped me further my career. I think that's one of the amazing things I was able to get from doing that fellowship.

Dan Keller 2:58 What made you interested in Parkinson's disease, to begin with?

Dr. Lynda Nwabuobi 3:03 One of the things that drew me to Parkinson's was, I think, the physicality of the disease. As a neurologist, we truly rely on our physical exam to diagnose a lot of neurological conditions, so being able to detect the cardinal features of Parkinson's at the bedside and feel fairly confident in the diagnosis, I really found that appealing. And I remember as a resident walking into a room in the hospital and quickly recognizing that a patient that I was about to see had some Parkinson's disease features. I found that so fascinating. That was the first thing that drew me to it.

And then, secondly, Parkinson's disease, it typically affects an elderly and geriatric population, which I think is a group of people that are often ignored in our society, and I do have a passion for taking care of individuals in this age group and providing them care, just for the simple fact that I feel that they are often ignored, and life shouldn't just stop because you're 65 and above, I really don't believe in that.

And finally, sometimes about Parkinson's, it's a disease that truly affects the whole body and the whole being, and it's a chronic disease that you live with for the rest of your life, and it necessitates getting additional support from friends, family, really anywhere that you can, and I find that I enjoy, you know, managing the patient, the family, and just like coming together with a group of people, all hands on deck, to provide the best care for the patient. So all these things about Parkinson's disease and the way it affects the patient, it truly drew me to it, and I made it the focus of my career.

Dan Keller 4:31 Age is just one disparity that people encounter in getting health care. So, what inspired your work in investigating health disparities, specifically in Parkinson's disease?

Dr. Lynda Nwabuobi 4:45 Many disparities have been found in Parkinson's disease care. There are several papers that have been published on it, and for example, one of the biggest ones that we know is that individuals who identify as African American or Hispanic, they're 30 to 40% less likely to get neurologist care, and they're more likely to be seen in their communities by non-neurologists, you know, primary care physicians, or other providers. We've also seen other findings that, you know, people who are African American, they're less likely to be initiated on Parkinson's disease medications at diagnosis. We also know that women are less likely to be taken care of by a neurologist or Parkinson's disease doctor, so these are some disparities, just a few among the many that have been found.

And in my work, one of the first pieces of research that I did that focused on Parkinson's, I looked at individuals who were homebound with Parkinson's disease, and I looked to see what are some of the social factors and any disparities between the men and women in this group, and the main finding from that was that women are more likely to be alone. The women with Parkinson's who were homebound, they're more likely to be alone, and this has been reported in other studies. And I think that lets us know that this is a group of people that we need to pay more attention to, because we know that Parkinson's requires a lot of support beyond the individual with the disease. So that's one of the first things I looked at.

And something else I've looked at is comparing the care between two groups of Parkinson's disease individuals that were cared for, one group at a public institution, a public hospital, and then another group at a Parkinson's Center of Excellence, and both groups were cared for by the same physician, and the goal was to see, is there any difference in the care that both groups received. And one of the findings was that the group being taken care of at the public hospital, they had less access to physical therapy and exercise, and they faced more barriers to getting deep brain stimulation, and they also had less access to one of the major Parkinson's disease medications that we use, and these are all differences, despite having the same treating doctor, and this tells us what institution you're located at can affect the type of care that you get. So, these are some disparities that I also found in my study, and I think the goal is for us to be more aware of these disparities and find solutions to tackle them.

Dan Keller 6:56 Another thing that affects the kind of care you get is what comes out of research, those findings. Is there a disparity in who participates in clinical trials, that they are represented, and you know what happens, how they react, and how they should be treated?

Dr. Lynda Nwabuobi 7:13 Absolutely. You know, when you look at the majority of Parkinson's disease studies, and you look at clinical trials, the majority of patients who participate in these trials are people who identify as white ethnically, and then it's also a majority of men. I don't remember the number exactly, but it's a very high percentage—over 90% of these studies have white patients as the majority of people who are participating in these studies, and so it affects the results that we get from these studies, because we're not able to generalize them to the whole population. And so the results that we're getting from testing new drugs and treatments on a majority of individuals that are white, we're also applying the same treatments to individuals who identify as ethnically Black or Hispanic or Asian, and so we need to have more diversity in clinical trials, making sure that the clinical trials reflect the individuals that are treated, but this is a definite fact that has been seen in many studies.

Dan Keller 8:11 So, what are some of the potential solutions on how you can start providing more equitable care for Parkinson's disease patients, especially for some of the communities you identified who are getting suboptimal recognition?

Dr. Lynda Nwabuobi 8:25 I think one of the first steps is just being aware, so having conversations like this, like we are having right now, people being aware that these disparities do exist, because if you don't hear about it, you assume that everyone is getting equal care, right? So being aware that they exist and knowing what the disparities are, and then to providers and clinicians and organizations who are involved in Parkinson's disease, I think finding gaps in the care or services that you're providing to make sure that you are reaching every single person appropriately and that you're providing optimal care to them.

So, for example, if you find that you're not prescribing a certain medication to a certain group of people, finding ways to address that. For example, at the institution where I did my research, one of the Parkinson's medications was not on the pharmacy formulary, and that was just one barrier. And so this would involve having conversations with the pharmacy to see how we can include that medication into the hospital formulary.

And then something else that we see often is academic institutions oftentimes have separate clinics for their private patients versus their Medicaid patients. I think that's a bigger issue in our healthcare system, and in this country, but I think that when you have a system like that, that can easily lead to disparities in care when you have two separate clinics treating people based on, you know, their insurance status, right? And I think ensuring that you look at both groups, both clinics, and make sure that you're providing equitable care for both groups.

And then also, Parkinson's disease organizations—there are a lot of big, powerful ones in our country. I think that one thing they need to do is to ensure that their outreach efforts are culturally sensitive, meaning that they are considering the cultures, beliefs, the history, and language of marginalized groups when they create their programs, and making sure that there's translation to other languages, so that everyone can truly access it. And then making sure that their programs are not just online, because not everyone has access to a computer or to the internet, but making sure that they actually physically go into communities to reach people who are not able to access things online. And I think one easy way to do that is, you know, partnering with community organizations that are already doing the groundwork, located in these communities and are trusted, partnering with those organizations to find a way to reach these communities that we're not being able to reach, so far.

I think, you know, for our individuals with Parkinson's who may be listening to this, you know, you may be wondering, how can you help? I think that Parkinson's disease, it's a disease where we have a lot of advocates in our patients and their family members, you know, people go and do the walks and the runs for Parkinson's disease every year, so we have a lot of advocates, and I think being more aware about these disparities now, you can serve as an advocate for them. For example, your institution that you get your Parkinson's disease care at, you know, asking them, "What are you guys doing about these health disparities that you know I just learned about? Are you guys making sure that you're reaching out to, you know, different patient populations and marginalized communities?" I think patients can advocate by reaching out to Parkinson's disease organizations, and you know, asking them these same questions. How are you tackling this issue, and just holding institutions and organizations more accountable?

Dan Keller 11:36 One way you did outreach, I saw, was you went to a local farmer's market, yeah.

Dr. Lynda Nwabuobi 11:42 Yeah.

Dan Keller 11:42 And what was the reaction, and what was the outcome? Did people actually become more aware and take advantage of certain things that the health system could offer? Yeah.

Dr. Lynda Nwabuobi 11:51 Yeah, that's a really good question. So I started this farmer's market effort, I call it Neurology at the Market. I started this while I was a Parkinson's Foundation fellow at Columbia, and one of the things I noticed at our institution, when we see the majority of our patients, is that the majority identified as white. However, we were located in a neighborhood that's very diverse, predominantly Hispanic, and so there was a mismatch, and I felt that we needed to go more into the community that we're surrounded by and teach them about Parkinson's, learn what they know and make sure that they know that we are here at this institution. This is what we treat.

And so the farmer's market, I walked by it, you know, every week, and I thought that would be a great idea to set up a table there, and it would be a good way to reach the community, because when you look at the market, it's the perfect demographic for Parkinson's, you know, people from the community come in and shop, and it was just a very comfortable environment. So I partnered with the institution, some organizations, and GrowNYC markets, and set up a table there, doing it once a month over the summer. I believe it was 2019 I started this, and I had our social worker with us who spoke in Spanish, and we basically just provided a lot of information about Parkinson's to people who came to shop at the market.

People really appreciated basically kind of getting an insight into Parkinson's, and just having a doctor who's standing there and just chatting with you about different things. And we also collected a survey, and you know, we found that people knew mainly about tremor, but did not know about the other symptoms of Parkinson's. We met some people who were affected by Parkinson's in different ways in their lives, and you know, they learned more about our clinic. I wasn't able to measure whether the market itself was able to bring in more patients to our clinic, but it showed that, you know, doing the market is a feasible way to be out there and do community outreach and have people learn more about Parkinson's.

Repeated the market just last year, and this time I have, you know, medical students, residents involved, and we're teaching not just about Parkinson's, but about other neurological ailments, because I got the sense based on surveys that people wanted to also learn about other things: headaches, migraines, stroke, dementia. And so we've incorporated education also into the plan, but Parkinson's remains the main focus, and it's been quite successful being able to reach different people from different walks of life.

Dan Keller 14:06 I noticed in a picture of you at the farmers market you were wearing a white coat, which is often taken as a sign of authority and credibility, but does that also create some distance from the crowd you're trying to reach or relate to? What's your recommendation?

Dr. Lynda Nwabuobi 14:22 That's an excellent question. And so the first day I did the market, I wore my white coat. The first time I went into the market, I noticed that people did not notice me. They saw the table, they saw materials, and would just come look at it, but they did not see me as a person who had the knowledge that they could benefit from, even though I was wearing my ID. And so I think that once they saw the white coat, they go, "Oh, you're a doctor," and once they recognized that, I noticed a shift that people felt more comfortable asking me questions and feeling like they could learn something from me.

However, when I repeated the market last year, I wore a jacket from my institution, not a white coat, because I had other people with me, like our residents and our medical students, and I didn't want everyone wearing a white coat, because that would be too much, and I just told everyone, wear your ID, wear, you know, something that has our institution logo on it, and present ourselves that way. But I think it can go both ways. It depends on the community. I think in that community, where I was for the first market, they took me more seriously because I was wearing a white coat, and I did see the difference.

Dan Keller 15:22 Have you thought of other places or venues to do outreach similar to what you were doing at the farmers market, but if people don't have them around their area, what kind of places should they look for?

Dr. Lynda Nwabuobi 15:34 I think partnering with community centers, senior centers, they are able to draw the perfect demographics that are often affected by Parkinson's. The senior centers, different seniors in the community come and, you know, have their lunch, they play games, and so, you know, you can sneak in a lecture in there, a quick 30-minute lecture and a talk, and teach people about Parkinson's. So that's one really good place to reach out to individuals, and religious organizations, such as churches. I've worked with churches in the past to do some education, so religious organizations are another one. And then, you know, just other community organizations that do government work, are in the community, and provide different resources to the community and are trusted. Those other community centers also, you can give talks to them.

And then I'm doing a lot of my talks these days via Zoom with the pandemic, and this way I found that I've been able to reach even more individuals, you know, by working with these different organizations and setting up different Zoom talks. One of the talks that we do here at my institution at Cornell, it's a video conferencing talk, and it's basically broadcast to different senior centers all over New York City, so to the other boroughs, so Brooklyn, Queens, the Bronx, and so I'm giving this talk, but it's reaching to different senior centers and different organizations and different people in their homes at the same time, so I found that doing talks over Zoom actually I've been able to reach more people.

Dan Keller 17:00 Well, this has been great. It puts a whole new perspective on reaching communities and informing them and finding out what they know, what they're thinking, and maybe even misconceptions. So, thanks a lot.

To see more about Linda's training and her research on healthcare disparities, search our website at parkinson.org on disparities and see the article called Tackling Disparities in PD Care: A Movement Disorder Specialist's Story. Also, within that article is a link to information about the Parkinson's Foundation Movement Disorders Fellowship, and how it has supported specialized training for more than 40 years. As the number of people with PD is expected to increase as the population ages, the need for this sort of training and care is greater than ever.

In terms of healthcare disparities and underserved communities, you may be interested in some past podcasts. One with Aaron Daly is called Extending the Reach of Parkinson's Resources and Services. In another called PD Across Race and Ethnicity: Outreach to the African American Community, Dr. Reversa Joseph describes her efforts to raise awareness of PD in this community. For an international perspective, see Parkinson's Education Through Community Outreach, in which Dr. Louis Tan describes an outreach program in Singapore and the alliances they have made with other organizations. To hear about gender disparities in PD research and care, go to the podcast called Encountering Gender Differences: Women and PD Initiative. Along these same lines is a podcast titled Addressing the Unmet Needs of Women with PD, and remember that we have several bonus episodes in Spanish.

As always, our helpline information specialists are available to answer questions in English or Spanish about today's topic, or anything else having to do with Parkinson's. News and updates about future events and resources are available by joining our email list at the bottom of our website's homepage. If you want to leave feedback on this podcast or any other subject, you can do it at parkinson.org/feedback. If you enjoyed this podcast, be sure to subscribe and rate and review the series on Apple Podcasts, or wherever you get your podcasts.

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 other week till next time. 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.

Dr. Lynda Nwabuobi is an Assistant Professor of Clinical Neurology at New York Presbyterian/Weill Cornell Medical College, specializing in Parkinson’s Disease and Movement Disorders. She diagnoses and treats individuals with Parkinson’s disease, tremors, and other neurological diseases with the goal of delivering compassionate and individualized care using a holistic and multidisciplinary approach. In addition to her clinical work, Dr. Nwabuobi has interests in health disparities research, teaching, advocacy, and community engagement/outreach. She has published several articles in peer-reviewed journals and has presented her work at national and international conferences. She is actively involved in educating underserved communities about Parkinson’s disease with the goal of improving access to care.