The Importance of Building your Care Team

Webinar & Transcript

Eden Feldman: Everyone, thanks for joining us today. Give everybody a couple of minutes to just get in, get set up and hooked up to audio. So nice to see some familiar faces. Hi, everyone. Please feel free to open up your chat and tell me where you're from, but also to get comfortable with the chat so you can put in questions.

As always, if anybody needs closed captioning, if you click on the three dots on the bottom above 

more, you can enable closed captioning. Hi, ooh, snow. Somebody had said yesterday that if you look at the, uh, two words in the middle of snow, it's no. And so that's how they were feeling about the snow. Um, I'm Eden and with me are my awesome coworkers, Kelly and Amanda.

And today we're so happy we have Jamie Hatcher-Martin, Dr. Jamie Hatcher-Martin. She is a neurologist who [00:01:00] completed her Doctor of Medicine and Doctor of Philosophy from Emory University. She has a subspecialty training in movement disorders and is a scientist and advocate with a special interest in telehealth and clinical research. She is currently the Director of Movement Disorders at Synapticure Incorporated. Dr. Hatcher Martin, we're so grateful you're here today. Thanks for joining us. 

Dr. Jaime Hatcher-Martin: Thank you for having me. Give me just a second. I just lost my screen. Give me just a second. No problem. 

Eden Feldman: Hi, Glendale. I'm actually thinking hi, Marsha, but I'll say hi, Glendale.

Dr. Jaime Hatcher-Martin: It's a pleasure to be here today. I really appreciate everybody joining us. Give me just a second. I'm just pulling everything up and I'm going to share my screen. Yeah. All of a sudden, I don't know what happened. I lost. Let me just check. 

Eden Feldman: Technology is only great when it works, but that is what happens. 

Dr. Jaime Hatcher-Martin: I had it pulled up right before we came on and then.

Eden Feldman: Then we made her take it down because [00:02:00] we're mean like that, but that's okay. 

Dr. Jaime Hatcher-Martin: Okay, so let's do this. I'm going to share my screen.

Okay. Can everybody see my screen? Got it. Thank you. Perfect. Okay. So, um, again, thank you so much for joining us today. Um, I would like to talk to you a little bit about the importance of building a comprehensive care team for Parkinson's disease. So, um, as Eden mentioned, my name is Jamie Pratcher Martin. I am a movement disorders neurologist by training.

Um, and I am currently the director of movement disorders at Synapticure. Um, I am a clinical researcher. Um, I've done everything from basic science all the way up to, um, large scale clinical trials. And I've been a telehealth advocate, um, since I started my first, uh, telemedicine clinic for patients with Parkinson's disease and other movement disorders in 2016.

So I think it's really important to start off with, you know, the overall ethos or the thought of this [00:03:00] talk and of my practice in general is that dealing with the diagnosis of Parkinson's disease is is hard enough, you know, you should really be able to rely on a team that hears and acknowledges your challenges, while helping you navigate the care system and all of the issues that come along with your Parkinson's, and, for a lot of people dealing with the disease itself and on top of having to navigate, all the appointments can really be difficult and you shouldn't have to always be your own quarterback. So this is just a quick overview of what a comprehensive care team is. We'll talk about why is it important? Um, who all should that include?

And I'll tell you a little bit about, you know, where you can find one or where you can put one together and a little bit again about the company that I work for called Synapticure. So a comprehensive care team is a group of healthcare professionals that works together to provide expert care to really help you maximize your quality of life.

And this includes the motor symptoms of Parkinson's disease, as well as many of the non motor symptoms of Parkinson's [00:04:00] disease. So why is it important? Why is it important to have all these people together? You know, there's obviously everybody talks about the motor features of Parkinson's disease, which can certainly be troublesome, but the non motor features of Parkinson's, including psychiatric disorders, cognitive decline, sleep disturbances, um, dysfunction of the autonomic nervous system.

So things like, you know, your blood pressure dropping when you stand up or blood pressure being low urinary issues. Yeah. These are actually more predictive of a perceived quality of life than the motor issues and we know that worse quality of life is actually associated with more frequent hospitalizations and significant partner strain.

So it's really behooves all of us for you to have an overall better quality of life. So who can be on a comprehensive care team? Um, this list looks intimidating. Um, and it can, it is. I understand there's a lot of people that are on here, but I think it's important to understand that this is just a, a summary of people you might see [00:05:00] along your way.

You may not need all of these people and you certainly may not need them all at the same time. Um, but just an overview of people that you could consider, um, that might be on your list. So the first is a neurologist. And preferably, you'd like to have a movement disorder specialist, and we'll talk a little bit more about all of these in a couple of minutes.

You want your primary care physician. You want your therapist, so physical therapists, um, occupational therapy and speech therapy. You might find that having an exercise instructor or a personal trainer might be beneficial. Uh, a dietician or a nutritionist, um, can be really helpful as well to help you plan out diets and specific things.

A psychiatrist and or a psychologist, and we'll define what those are. a neuropsychologist or a cognitive specialist that can help identify if you have any cognitive issues that are arising, a genetic counselor, a social worker or a care coordinator, an insurance navigator, a neurosurgeon for some of you.

Um, and then [00:06:00] there's other specialists, right? Other specialties that we may actually, um, uh, refer you to. And I think most important is to have, you know, allow your family and friends to be part of your team to help out and other people with Parkinson's disease as well.

So you look at this and you think how in the world am I going to afford all of this, and how am I going to put you know how this is a lot of time right if you want me to see all these people it's really a lot of time. And as I mentioned, I think it's important to understand that all of these people, you don't need to necessarily see all of them at one time, you know, you may need speech therapy at this time and then maybe next year you need physical therapy.

And as a movement disorders specialist, you know, we understand that a lot of these issues come up in Parkinson's disease. And so we're very comfortable with the initial treatment and management of a lot of these things. And so in many cases, we can actually start you off on certain treatments or certain therapies or guide certain things.

Um, and we'll only refer you to some of these more specialized treatments if we feel like it's, it's really necessary for your care and your [00:07:00] quality. So let's start a little bit with, you know, what is, why is a movement disorder specifically important? I have a great general neurologist, why is a movement disorders neurologist important?

And it's You know, it's, it's great. Neurologists of training where we get several years of training and all of the different specialties of Parkinson's, I'm sorry, of neurology, but a movement disorder specialist undergoes specialized training, usually at least one to two additional years. That's completely focused on movement disorders.

And for the general, you know, most movement disorders clinics, Parkinson's disease and some of the related syndromes make up about 80% of, of that. Okay. clinic. And so this is, you know, Parkinson's is predominantly what we see. Um, we see movement disorders all day, every day, right? So that's how you start to pick up those little nuances.

You can pick up a lot of the subtleties that come with diagnoses. You get a lot of experience with side effects from medications. Um, we understand those [00:08:00] nuances of medications and why, why I might choose this one in this person and that one in that person. And you get people that come in a lot of times and say, Hey, you know, I heard on my support group or a friend of mine tried this medication and it worked really well for them.

Why haven't you offered this medication to me? And a lot of times it's because there's other things that play into why we would choose a medication, not just whether you have Parkinson's or not. We also know how medications can actually work against each other. Um, so a lot of times, you know, there's medications will actually avoid because we know that they can actually counteract each other and we don't want that to happen.

Um, there's no blanket plan for everybody, right? There's no cookie cutter plan. We really want to develop a personalized plan that's specific for your symptoms that can, the concerns that you're having. Um, and understanding what are side effects of medications versus what are symptoms of the Parkinson's, um, you know, Parkinson's disease itself and what's not related to Parkinson's.

I think one of the biggest things that I see happen [00:09:00] for a lot of patients is once they get the diagnosis, every symptom that they get sort of gets like, oh, that must just be a Parkinson's symptom, right? I, My toenail is coming off and that's a literal complaint. Um, that must be part of my Parkinson's disease.

And so I think it's important, you know, to be able to understand what things are related and what things are not. And in some cases, a movement disorder specialist may be more up to date on, uh, clinical trials. They may even actually be involved in administering them. And so having that kind of access as part of your team is really important.

Now, for some people that may mean that you know, you have a movement disorder specialist as your neurologist full time. For other people, that may mean that you touch base with a movement disorders neurologist a couple of times a year, and then you see your, your, you know, general neurologist the times between.

Um, and one of the, you know, the sort of the caveat to this, or one of the things that that's can be difficult, is that movement disorder specialists in general are in short supply. So, um, [00:10:00] sometimes you may need to travel further, um, to be able to see one, or you may need to use something like telemedicine, um, in order to get access to one.

And we'll talk a little bit more about that later. In addition to your movement disorder specialist, your primary care physician is really critical. Um, this is the person that really helps coordinate your care, right? This is, this can be help, help be one of your quarterbacks. Um, they focus on the immediate and long term health benefits.

of, um, of, you know, not just related to Parkinson's disease, but all of the other medical issues that may come up. Um, they look at age appropriate screenings. So things like your cancer screenings, looking for heart disease and kidney disease and, you know, checking all of those, you know, sort of things that come along as you age and you want to make sure that we're managing.

And then goal is to really keep you healthy beyond Parkinson's disease.

So as far as therapies go, right? There's all different kinds of therapies. Um, probably one of the most important is physical therapy, um, PT or physical [00:11:00] therapy, who's really focused on helping you maintain and improve your mobility and really focusing on the things that are, that are important or specific to Parkinson's disease.

So that includes things like your walking, your balance, your overall strength, your posture and your flexibility. And it's really ideal to have somebody that's trained, excuse me, in Parkinson's specific therapies. So those could be things like the big programs and power, because right, you know, Parkinson's physical therapy, it's, you didn't just get it, have a knee surgery, right?

The therapy that you do to recover from knee surgery is very different than Parkinson's. And so you want to make sure that the person that you're seeing understands what you're capable of, what maybe what the limitations might be, what your goals are, so they can help design a plan that can actually get you to those goals.

So this is, um, one example. This is actually our, our founder of Synapticure. He actually has ALS. [00:12:00] Um, but I wanted to show you, you know, there's, there's a lot of, of examples now of therapy that's available. You can always go somewhere, right? Go to a regular rehab facility or a clinic and get physical therapy there.

Um, it used to be, you could either get that or you had to get home health and those were your two choices and you were kind of limited to. Whatever the home health service offered, but more and more companies now are actually offering the ability to come to your house to do outpatient therapy. So it's, it's in your house, but it's outpatient.

So it's billed as outpatient. It's covered under sort of that section of your insurance. But by doing that, you can actually a lot of so this is a particular company that we often work with called Luna. Um, you can find neurology trained physical therapists, often Parkinson's disease specific therapists.

And I'll just play this while we're, I'm talking a little bit where they'll actually come to your house, um, and, and work with you. And what's really nice about that is they can see you in your settings, right? They can see what it's like for you on your daily basis. You [00:13:00] know, where are you trying to walk from?

Where are you having the most difficulty? Is it doorways? Are you tripping over rugs? You know, what are the specifics in your house? Not in the sort of ideal, you know, physical therapy setting. So in addition to physical therapy, there's also occupational therapy, right? So physical therapy focuses mostly on mobility.

Uh, occupational therapy focuses more on fine motor skills, independence, activities of daily living. So those are things like, you know, hygiene, um, being able to prepare, you know, eat, prepare foods, um, things like that. But, you know, getting in, you know, in and out of bed or up and out of a chair. Um, they can also do, um, some cognitive rehabilitation.

They can help with communication and tricks for communication. One of the really, uh, things that I love, um, that they often will do are what are called home safety evaluations. So they actually come to your house and again, kind of walk you through your day. So show me where you sleep. where do you get up to use the restroom, [00:14:00] kind of walk me through your day.

And they can look at, you know, areas of your home where things might be able to be, you know, modified. And it could be something as simple as picking up a rug or moving a little furniture. Um, but things that, that can be modified to help improve, um, your function and your safety and right common theme. It is ideal to have somebody that's, that's trained in Parkinson's specific therapies.

There's also speech therapy, right? So speech therapists or speech language pathologists, um, focus on your speech and swallowing. We know that in Parkinson's disease, one of the most common things that we see is that your voice gets a little softer, what we call hypophonia or low, um, sound or low voice. So there can be trouble with projection of your voice or enunciation, right?

Sometimes words start to run together, especially if medications are wearing off, um, or your, you know, words might be a little bit slurred. You may also notice some trouble with swallowing, um, and so they can help out with assessments for this and [00:15:00] tips to help you with swallowing. Times when you might think, you know, sometimes people say, you know, I don't have any trouble swallowing, you know, or how do I know, like, how do I know if it's trouble swallowing?

You might notice that you're coughing more. You might have increased throat clearing. Um, you may actually have been diagnosed with what's called aspiration pneumonia, which is where, you know, saliva or food or drink, um, has gone down the wrong way into your airways and caused a pneumonia or some inflammation.

And they can also give you tricks on dietary consistency. So maybe you're having some trouble chewing, or maybe you're having trouble swallowing things like. you know, steak. And so they might talk to you about cutting up food a little bit smaller or different consistencies of food. They can also really help with communication.

Um, and again, it's really ideal to have somebody with some of the PD specific therapies. So there's programs like the speak out or loud programs that are really specific for Parkinson's. In addition to the prescribed therapies, it can also be [00:16:00] really beneficial to have, um, either an exercise instructor.

Some people actually like to have a personal trainer or maybe somebody who does classes. Um, this can be really beneficial for those maybe even who are not used to exercising, right? Maybe you've never been a gym person or you've never, you know, you've always just been sort of on the go and so you've never really exercised.

So they can be really beneficial for that. They can extend the benefits that you're getting from physical therapy. So the therapist can work with you on several things and then your, your continued activity can help extend that. You want either the classes or the instructor that you're working with to focus on the key elements for Parkinson's disease.

We know that aerobic activity is really important. Strength training is really important. I always point this out. It's really especially important for women because we know that muscle building actually helps promote bone growth or not bone growth, but it helps maintain bone density. So it helps stave off osteoporosis.

Um, and then right by working on balance, [00:17:00] hopefully you're less likely to fall. But if you do fall. You have more muscle, so that helps protect the bones, and then the bones are stronger, so they're less likely to break. So, you know, we want all of our patients to do strength training, but I really try to make a special point for women because I know a lot of people will say, well, I don't want to get big and bulky.

There's lots of strength training that you can do that. You don't have to worry about becoming bulky classes and having somebody else that you're scheduled to work with can be really helpful for maintaining motivation, right? How many days you're like, I just don't want to go. But somebody's waiting on you.

Somebody's expecting you to be there. So that can really help with motivation. And there's all kinds of classes now, right? There's boxing, right? There's things like rock steady boxing. There's dancing, there's yoga, there's Tai Chi, there's cycling. There's so many different classes that are available right now.

Um, And again, you want somebody that understands the safety issues that are in Parkinson's disease, um, that there's a safe instructor to participant ratio, you know, in some cases, you may [00:18:00] be, you may not have any trouble with balance at all. And so this may not be as much of an issue for you, but if you do have trouble with balance, it's, it's helpful to know that.

And you can often just go online and try to find classes that are near you. Um, so just look at Parkinson's disease, exercise classes. There's often gyms that will offer them community centers, sometimes churches, Jewish community centers, things like that will often have them again. There's often there's sort of some new programs.

that are offering these things through your insurance, that are offering online classes. So Prime PD is one company that's offering through insurance, uh, for at least through some insurance companies, it's actually covered. And it's a whole host of online classes that you can have access to. If it's not covered by your insurance, I think it's about 19 a month, which is actually really reasonable.

Um, there's other like Mission PD that have all kinds of courses that are available, um, personal training that you can do in person or online. So it's great for You know, people, if you don't, if you don't want to get out of the house, or maybe some of [00:19:00] these services are not available that there's definitely ways that you can get access to them.

So, 1 of the most common things I get asked about is, you know, diet and nutrition and there's no 1 specific diet that's recommended for Parkinson's. Um. Generally, healthy diet is recommended, although the Mediterranean or fine diet is actually the one that seems to be the most helpful, but a dietitian or nutritionist can really give you specific information for you.

Not just these sort of generic recommendations for the population at large, but things that are specific for you. Maybe you also have heart disease, or maybe you have diabetes, or maybe you need to gain weight or lose weight or whatever the issue is. They can really tailor a program that's specific for you.

And that's also in accordance with maybe have some trouble. Sorry, I'm starting to lose my voice a little. Maybe you have some trouble with chewing or some trouble swallowing and so they can design diets that are specific for you find things if you know that. Maybe if your diet is a little bit [00:20:00] limited to find things that are enjoyable so that you, you're, you actually enjoy what you're eating and they can also along with your, your, your movement disorders.

Neurologist talk about how certain foods and the timing of them can actually affect medication effectiveness. Right? So we know that some people, if they take. if they eat protein too close to their Sinemet or their carbidopa levodopa, that may actually affect how, how beneficial or how effective the medication is.

And so if you're one of those people, then, then, you know, between your neurologist and a dietitian, they can help you sort of plan, you know, when you eat protein, when you take your medications, maybe you concentrate your protein into one meal. So you really only have to plan around that one. Okay. I don't know.

Apparently psychiatrist and psychologist is really small. So I'm not sure what happened with the title there. So, a psychiatrist is a medical doctor who is able to great treats, um, you know, conditions of the mental conditions, things like depression and anxiety. They can [00:21:00] prescribe medications. And other treatments that are available, and they may do therapy, whereas a psychologist really focuses more on talk therapy, and it's really important in Parkinson's disease, because depression and anxiety are extremely common, more common than even other things like cancer.

Um, so it's really part of the underlying rate, just like there's disruptions in the chemical dopamine in the brain. There can be disruptions in some of the other chemicals as well. And so it's really part of the underlying disease itself. Um, there's also behavioral changes that can happen, um, sometimes as part of the disease itself, but also sometimes part of medications, uh, or a side effect of medications.

So things like, Um, what we call impulse control disorders. So, you know, people may have, um, compulsive or impulsive behaviors. So they may do things repetitively or they may do things without thinking about it. And sometimes it's the typical vices that we think about. So those would be things like excessive eating, [00:22:00] drinking, um, shopping, gambling, sex, pornography.

Sometimes it can be things that are a little less scandalous, right? It could be something like cleaning or, um, there's a term we use sometimes called hobbyism. Where people get really focused on a hobby, um, and, but it can be to, you know, kind of to the, to the detriment of other things. I always remember a patient I had when I was in training who became obsessed with American history.

And you think, like, why does that even come up in conversation? But it was to the exclusion of other things like she was missing work. She was not sleeping. She was skipping meals and it was a side effect of a medication. Um, and so those are things that can really help, you know, that both your neurologist and a psychiatrist can, or a psychologist can help tease apart, um, for a psychiatrist, right?

It's, you want somebody that can understand the nuances of medications, what's safe to use in Parkinson's, because some of the, Medications that are advertised in commercials and, you know, things like that will actually block dopamine. So you already have low dopamine levels [00:23:00] in Parkinson's. You're, you know, theoretically taking medications that either, you know, replace dopamine or mimic dopamine.

And then if you take an antidepressant that actually blocks dopamine. Then you're kind of just letting them duke it out. So there are certainly medications that antidepressants that are safe to use, but you want somebody that understands that interplay with the medications that you're already on. Um, you want somebody who is familiar with chronic disease because, right, this, there's, This is different than like, Oh, you know, my house burned down, right?

That's sad. It's, it's something to certainly be upset about, but that is a sort of an event in time. This is something you have to deal with in the long term. And I think anytime you have chronic disease, especially as you get older, you know, you think about things like, Um, your, you know, how your future is different.

You think about things like mortality, you may think about death and how you might die. And that's normal. That's a normal thing. It's not, you know, Oh my gosh, this [00:24:00] person, you know, is thinking about suicide. It's a normal part of the process and having somebody that really understands that is important.

And if you are older, having somebody that's, uh, what we call a geriatric psychiatrist, um, can be really helpful as well, because again, there's certain medications that as you get older, maybe your kidneys don't clear it out as well, or maybe you might be more sensitive to the side effects. And so you want somebody that really understands all of that.

And a lot of times I'll have, um, patients say like, well, what do I need a psychiatrist for? I have Parkinson's disease and nothing's going to change that. So like, it doesn't matter that I'm upset about it. Like, nothing's going to change that, which is true, right? We can't change the underlying disease, but a lot of what psychiatrists and psychologists will work on is what we call coping mechanisms, right?

Learning how to manage your feelings around something that can't be changed, right? If you can't change the situation, then you can focus on changing your own response to it. Um, and that can be really helpful in improving your quality of life. [00:25:00] So different than a psychologist is what we call a neuropsychologist.

Um, so a neuropsychologist focuses less on emotion and more on kind of the biological intersection where neurological disease and behavior come together. So they can do things like cognitive and behavioral assessments. Um, for those of you who may have had cognitive testing or neuropsych testing, sometimes it can be these really long pencil and paper tests that you do.

Um, but I think it's always great to have a cognitive baseline, right, to get your baseline, because when you get testing done. They'll compare sort of you to other people that are, you know, your, your gender, your age, your education level, and they kind of just have this generic norm, but you are you, and it's good to have your baseline, because.

If things change over time and you come in in six months or a year and say, you know, something's just not quite right, [00:26:00] then if we repeat testing, then we can really compare you to you, not just you to the norm. So I always remember a patient of mine who was literally a rocket scientist. She's like, I'm a rocket scientist.

And she's like, I blazed through all of the testing. Like they were like, you're completely normal. But she's like, I'm not normal for me. I can't do the same things that I used to do. And regardless of whether I can pass, I'm a good test taker or not, I know that there are differences in the way my thinking is going.

And so in her case, it was really helpful because they were able to say, like, you know, yes, it's still technically in the normal range, but we've noticed a definite change since her initial visit. They can also really help tease apart the differences between sort of the expected changes with just aging, right?

We all sort of walk into a room sometimes and think, like, what did I come in here for? Or you're going to do one thing and then you get sidetracked and do something else and [00:27:00] you're like, wait, was I supposed to do so expected changes versus the changes that are common in Parkinson's disease, right? So there's some things like delays and recall of information that are more common in Parkinson's versus dementia, right?

Which is cognitive impairment that impairs your daily function. But you can also, depression can cause cognitive issues, medications can cause cognitive issues. So when there's no clear cut reasoning, a lot of times the neuropsychologist and the testing that they do can help tease apart those things. And by figuring out what your strengths and your weaknesses are, they can really help start to identify some strategies that might be helpful for you in particular.

Um, based on what your strengths and weaknesses are, not just again, not sort of these generic, um, you know, recommendations that may come when you, you know, you go to Facebook or you go to Twitter or you go to, you know, Google you, um, they're really specific and tailored towards what it is that you need.

[00:28:00] Okay, so, um, for a lot of people, a social worker or a care coordinator can be really helpful. So a social worker is somebody who's trained to really help create change, um, encourage resilience, helping with coping mechanisms. A lot of times they focus on what are considered vulnerable populations, and so that can be anything from children.

To people who are, um, you know, in the correction facilities or people who are in mental institutions or people who have financial um difficulties But it can also mean people who are dealing with a lot of things, right? So somebody like with parkinson's disease where you're trying to deal with the disease itself Maybe you're still trying to work.

Maybe you're trying to figure out, you know Retirement and what insurance to do and you're trying to figure out how to you know, juggle these 48 different appointments that I'm telling you that might be helpful for you. Um, so they can really help coordinate a lot of those services and, and take a lot of that off your plate, um, and, and do a lot of the [00:29:00] legwork for those things.

Um, they a lot of times if they're, they may be able to provide counseling, um, and really just again, give you tips on how to navigate what can often be a really complex health system.

Genetic counseling. So we don't talk about this as much in Parkinson's disease as we do some other neurological disorders, but we do know that there are a percentage, a certain percentage of cases in Parkinson's that are clearly due to a genetic mutation. So it's passed on. Um, from one parent to the or maybe both parents to the child.

So a genetic counselor can really walk you through talking about what, what does it mean to have genetic testing? Right? What does it entail? What information are they going to be able to get? What information can they not get? Right? What, what, what can they tell you and not? Um, and You know, the nuances of a genetic test.

Sometimes it's not yes or no, right? Yes, you have this mutation or no, you don't. Sometimes there's gray zones. Sometimes it comes back and it says, well, there's this thing that's a [00:30:00] little unexpected. We don't know if it's really bad. Or not, it could just be like, you have brown hair and that person has blonde hair.

It could just be sort of variation, but we don't really know yet. We call those variants of unknown significance. So they kind of walk you through like what the possible results could be and what those could mean, but also what it means for you and what it means for everybody in your family, right?

Because if I learned something about my genetics, it's not just me that's affected, right? It's my parents. It's my aunts and uncles. It's my siblings. It's my cousins, my children, because I share at least some portion of my DNA with all of them. And so if I identify a genetic mutation in me, then that means I have other family members that are potentially at risk as well.

And, you know, if I, if I find out I get something that is automatically, it has to be passed on from a parent. Right. Yes or no from a parent. Then if I test positive, then that means [00:31:00] automatically that one of my parents is going to have that mutation as well. So they really talk to you about all of that information and sort of what it means for your family.

And then if you decide to go through with testing, you get the testing done, they help you coordinate that. And then they meet with you again and they talk to you about what the results mean. So, um, not everybody will necessarily need this, although I'm a big fan of genetic testing because you don't know if it's genetic until you look, um, and a lot of, we're identifying new genes all the time and in a lot of places, um, when you send off your, your, um, you know, your genetic test results, they'll keep track of things and anytime a new gene is identified, they'll go back through all of the people they've already tested and say, Hey, we actually have people that have this mutation now that we've identified it.

And they'll go back and they'll contact you and say, Hey, listen, we've identified a new gene. So I think there's definitely some benefits to that. So some of you, um, at some point may need [00:32:00] a neurosurgeon, right? If you get to the point where you're considering the possibility of deep brain stimulation or DBS, um, or focused ultrasound, um, or what we call lesioning, which is where they don't leave anything.

It's, it's, you know. They put a probe in the brain, but they don't leave it there. Um, then you might need a neurosurgeon or if there's certain research trials that you're interested in, whether it's DBS or, um, some of the, um, there's some trials where they're injecting stuff into parts of the brain that are involved in Parkinson's disease to see if they can either regenerate cells, or maybe they're trying to, um, you know, produce more dopamine in your own brain, as opposed to having to take it by mouth.

Um, then often you'll need a neurosurgeon to help you with that. Okay. And you really want somebody, obviously, who's, who's trained in this specific subspecialty of neurosurgery, um, and they will work very closely with a neurologist to really identify who, um, appropriate candidates for these procedures might be.

And then, as I mentioned, there may be other [00:33:00] specialties that we recommend as well. So there might be ENT or otolaryngology. So sometimes people have, um, changes in their vocal cords, um, and I have some patients that may actually even need Botox into their vocal cords, which is not something that I do. So we'll often refer them over to, um, like an ENT, especially somebody who focuses on voice.

Um, um, You know, right constipation is a common issue in Parkinson's disease. Um, there's lots of ways that we can try to treat it. But if people have specific issues that are not, um, adequately managed by the treatments that that we, as neurologists can use, then often we'll refer you on to a gastroenterologist or a G. I. Doc. Um, we may refer you to urology. Um, there are definitely some urinary issues that are common in Parkinson's, but we want to make sure that we're not missing anything, right? I don't, I'm the other end of the body, so I want to make sure I'm not missing anything, right? Is it a prostate issue? So if you're complaining of things like urinary frequency, or it's uncomfortable when you go, or you're, you know, [00:34:00] leakage, things like that, or, you know, then we may actually refer you to urology to sort of get a once over and make sure we're not missing anything before we automatically assume it's due to Parkinson's.

And then we know that people with Parkinson's are at a little bit of an increased risk of developing a skin cancer called melanoma. And so we do recommend that you see a dermatologist once a year for just a sort of a skin check just to make sure that there's nothing that looks suspicious. If there is anything that looks suspicious, then they can take it off, um, take a look at it and hopefully get rid of it before it becomes anything more concerning.

And then there may be other specialties like cardiology. Or things like that, if it's as other issues come up, if it's not clearly related to Parkinson's, um, then, you know, we may refer you there as well.

So not, um. You know, not not a referred service. Um, but I again, I really think that your family and friends are a such an important part and the most consistent part of your care team. Um, they play a major [00:35:00] role in your care and your well being, they can offer, you know, emotional and physical support. Um, and it's everybody's personal decision as to what, who and whether they tell family and friends about their diagnosis, especially early on.

Um, but I think it's really, it's important to have somebody that you can confide in. Um, that, you know, when you're just having a bad day that can, that can, you know, be there for you. Or maybe somebody that helps you make it to appointments or, um, you know, helps if you're having trouble getting something done around the house.

Maybe you're not supposed to be on, you know, a step stool anymore. So maybe somebody that can help you with things like that. Um, and I think it's really helpful to communicate and meet up with people, other people that have Parkinson's. Because no matter what. Nobody else is going to quite get it the way somebody else who has Parkinson's has, right?

You can tell people all day long about, you know, symptoms of Parkinson's disease. I can study for years and years and years and see a thousand patients with Parkinson's, but [00:36:00] nobody, you know, somebody else with Parkinson's disease is just... Going to get it. There's no explanation required. There's no, you don't have to worry about somebody judging you because you have a little tremor or because maybe you're a little slower than you used to be.

There's no need to explain and you can often meet people who have figured out other, you know, maybe little tricks on how to do something or, you know, they're like, you know what, I bought this thing off of Amazon and it's been amazing for me, or I went to this, you know, exercise class or I went to this physical therapy, whatever it is, you know, support groups, things like that.

Thank you. They can really be helpful in identifying resources that are available, tips and tricks, and again, just to have somebody that you can really sort of let the, let your guard down, um, and not feel like you, you have to, you know, be conscious of, of your Parkinson's symptoms. So this is all fine and dandy, right?

But we've mentioned all these people. So where, where do you find a comprehensive care team? Right? Can I just like, [00:37:00] right, can I go on Amazon and order one? Um, so a lot of times a large academic medical center or a large health system may have These centers of excellence, these comprehensive care centers, um, that have a large majority, if not all of these services available, either, you know, maybe not in the same building, but at least on the same campus, or they may have a network of people that can provide all of these services.

Um, I used to work at one of those. I was at Emory University in Atlanta for a long time. We had a comprehensive care clinic where people could come in and see multiple different people over a two day period. Um, which was fantastic, but it's also exhausting. Right. And so for some people, they're like, it's great, but it's just too much for me.

I can't, like, I just can't do, you know, two full days of like one after another appointments. So, so what do you do, right? What do you do if either you don't have access to one of these centers? Um, it's too far away. Um, you can't, you just don't want to do these full, you know, multiple day visits. You can [00:38:00] piecemeal it together.

So, with the help of your primary care physician, your neurologist, your, you know, family, your, you know, all of these different resources, you can start to put these things together. And I think it's again, it's important to understand that. All of these services, you may not need and you may not need them all at the same time and what you need may change.

It will not may it will very likely change over time. Um, and so, you know, finding those resources can be difficult, especially if you move, um, right advocacy groups like P and D alliance can really be helpful in identifying what some of those resources are. And, um, there's a new kit on the block, um, called Synapticure that I'll tell you a little bit about that may be a great resource for you as well, especially if you live in an area where none of these resources, um, seem to be readily available.

So Synapticure is the, um, the first fully virtual, um, teleneurology service, and we are dedicated [00:39:00] to patients with neurodegenerative diseases like Parkinson's and ALS. Um, it was actually founded by a patient, Ryan Wallach, the one that I showed you the video before, and his family. So patient centered care is at the very core of what we do.

Right. It's 100% what we're founded on, and it's we're staffed by neurologist who really wanted the ability to spend more time with the patients, right? We, you know, it's, I know what it's like coming from, you know, sort of multiple different practice settings, and nobody wants to race through patients, right?

Nobody wants that. And so, you know, we all that are working here now really wanted that ability to just sit and focus. Um, and really to be able to spend time to find out what it is that you need specifically for your therapy. Um, we work with your existing, um, care team. So primary care, neurology, we, right, we work with other neurologists, um, to help fill in the gaps.

So maybe you're able to see your movement disorders neurologist every six months, but you feel like, you [00:40:00] know, I'd really like to check in a little more often than that, or something came up, right? Some, something came up and I can't get in. Then we're able to help fill those gaps and provide you with the best and most up to date and evidence based care.

We currently have neurologists now in all 50 states plus DC, so we are officially nationwide now. Um, and this is just a comment actually from a care partner who said, I can't explain how much I love Synapticure as a whole. Everything from the doctors to the care team is beyond what I expected. So this is just a small sample of, um, the services that we offer at Synapticure.

So again, um, expert neurologic care. We do frequent visits. So the average is about every two months, um, but I have some patients that I see every month and I have some that are like, yep, I'm good. I can go three, four months. That's fine too. Um, but those frequent visits are available. We do collaborative medication review.

Um, we do education, right? Talking about your specific symptoms and why things might be happening and why we're choosing specific medications. Um, we [00:41:00] everybody that has signs up with us gets a care coordinator and that care coordinator stays with you. In fact, I think one of our care coordinators, I don't know if she's still on, um, is phenomenal.

Aaron, they kind of handholds, right? And they really help guide you through the whole process. They help you collect records. They help you schedule things like P. T. O. T. Speech, right? It's not just you get a prescription and you got to go look it up. They will help you identify what resources are available for you.

You know, who have who we got feedback on before, right? Like, oh, well, we know that, you know, this particular service we've had other patients use and they really liked them. Um, so they can really help, right? Ordering equipment. Um, you know, all of those things, anything that's needed. We can help out with, um, we can help determine clinical trial eligibility.

So we're not running our own clinical trials at this point, but, um, for those people that are interested in clinical trials, we can walk through, you know, what trials you might be eligible for and kind of do some sort of pre preliminary screening. Um, and then we can turn around and actually, you know, get in touch with those [00:42:00] clinical trial sites and, you know, find out if you might be actually able to participate in that trial.

Um, we do insurance navigation, so that can be, you know, choosing, you know, what part D program do you need, or I'm switching to Medicare, or I need Medicaid, or I need help with disability, right? I need to know how to file for disability. We can help with those things and we also have a team that's dedicated to, um, all the prior authorizations, right?

The things that everybody sort of rolls their eyes at, um, medication, um, prior authorizations, if it gets denied, then we can do the appeals. We can do the letters of medical necessity. Um, we have genetic counselors so we can do all of that testing that we talked about. And I think one of the most important things, one of the things that I love the most is that this is not a service that you have to subscribe to.

It's not a, right, you give x number of dollars per year and you get these services. We are insurance based. So we are, um, already on, um, formula, not formulary, but we're already in network. For a lot of the [00:43:00] major, um, insurance systems and, um, the other major ones are in the works. So this is something that would just be your regular, you know, copay.

Our goal is to not, um, you know, add to the burden, um, but to really help, um, you know, take some of that burden away from you. So if you want to look up a little bit more, um, our web address is or you can scan this QR code with your, your phone's, uh, photo. Um, if you just hold your phone up to it, it'll, um, You'll get like a little square that will pop up and you can click on it and go to the website.

So this is what our website looks like. Um, you can come and find there's all kinds of information about how we personalize care. Um, you can learn more about each of the team members. We have blog posts that go up sometimes multiple times per week. And if you're interested in hearing more specifically for you, then you can click on 1 of the register now buttons.

You just put a little bit of information in. Um, you can schedule an appointment with one of our care coordinators, um, right then and there, you can just, you know, [00:44:00] look at the little calendar and you can find a time that works best for you, um, and then they'll walk you through and tell you a little bit more about, um, you know, sort of some of the details and whether we might be a good fit for you.

So just as a recap, sorry, that's my kids bus alarm. Sorry. Um, just as a recap, um, this, you know, we know that a collaborative team approach for Parkinson's disease is really best at, um, optimizing your quality of care, um, not your quality of care, but also your, your quality of life. Um, it may take time to build your team, right?

If this is not something that you're expected to sort of run out of the gate and have all set to go by the end of the week, it may take time. Your needs, I say, may change. They will change over time. And so, you know, these can, this is a, this is a dynamic, um, team that you're building. Um, and again, you may not need all of these.

So don't, don't feel like these are all, you know, definitely on your list, but there are many, many, many resources available. And again, The folks at PMD Alliance are here for you. Um, you know, [00:45:00] we at Synapticure are here for you. There's all kinds of resources. Um, don't hesitate to reach out. So I will stop there.

I'm right at the 345 mark. Um, so thank you very much for having me today and, um, letting me kind of chat about what, how, you know, what I think is really important and near and dear to my heart. And I'm happy to answer any questions. 

Eden Feldman: Thank you so much, Dr. Hatcher Martin. This was awesome. Um, we did also put in the chat the, um, website.

So if you do want to save the little chat, uh, next to the little happy face icon in your chat, there's three little dots. And that is how you can save your chat so you can go back, um, if you didn't take the picture or whatnot, and just explore the website and see what they have to offer. We do have some questions.

Um, so I start at the beginning. Um, you had talked about during, um, the psychology psychiatry about some of the unknowns, the unknown side effects. And someone said, I want to know more about [00:46:00] these unknown side effects because how would I even know that I have an issue? What do I do? 

Dr. Jaime Hatcher-Martin: So, um, without getting into too, too much detail, some of the most common things that we look for are. So I'd say probably number one across the board is sleepiness, right? So there's lots of medications that we, we prescribe that sleepiness is a side effect. Confusion can be a side effect of medications, right? So when somebody comes in and says, you know, I feel like my thinking and memory is not what it used to be.

First thing I do is look at the list and see if there's anything on there that might be contributing. Um, and sometimes we'll actually even take somebody off of something. Like I have one patient, I took off a repineral and she's like, okay. Totally back to normal. But now I have RLS. So I want to go back on it, but now I know it's from the medication.

So I feel a little better about I just, you know, at least I know what it's from. Um, we talked about some of those impulse, um, impulsive or compulsive behaviors. Um, so that can be something. Um, those are the main things, but there's medications that can cause [00:47:00] hallucinations. Um, that's another common one. Um, I've you know, unfortunately, I've had some horror stories where, right, somebody got started on Rapenerol and then they had hallucinations from it.

And so then they were put on a strong antipsychotic medication, which blocked dopamines and the Parkinson's got worse. And then it just, it kind of snowballs. And so, um, those are things that can happen where sometimes we just really have to take a step, really like dial everything back and sometimes just peel the layers away and sort of start.

Maybe not fresh, but sort of start, you know, kind of a little more slowly, but I'd say those are probably the most common things that we'll see. But there are medications that can worsen anxiety that can worsen depression. So I think if you're having any of those symptoms, or if you're not sure, I always tell people just bring it up.

You know, it may be true, true and unrelated, but you don't know until you ask.

Eden Feldman: Someone asked, how do you manage, um, reluctance of many of the providers to work in teams? 

Dr. Jaime Hatcher-Martin: That's a great question. [00:48:00] Um, we're pushy. Um, I think a lot of it is just, I think one of the biggest things that we've seen is, um, when, so I'll preface it by saying, If your provider does not want to work on a team question that number 1, I would say, um, you know, if I have a patient that says, hey, I went here for a 2nd opinion, or I went there for, you know, this or whatever.

I'm all for it, right? The more sets of eyes that we have, I think the better. And if you have, you know, right, I work with local neurologists all the time. And I think as long as we communicate, I think it's important. If there are people that are reluctant, sometimes it's just, you know, we as, you know, physicians and scientists, um, by nature are, have a healthy skepticism of everything, um, until it sort of proves its worth.

So I think that's a, that's normal. Um, But I think over time, as people start to see, you know, the benefits of that, um, then hopefully, you know, we can encourage and change [00:49:00] the minds.

Eden Feldman: And let's see. Can you talk a little bit about how Synapticure is different than telemedicine? Um, and just again, I know you said it, but I just want to stress that it is available in every 

Dr. Jaime Hatcher-Martin: state. Yep. So we are a telemedicine service. Um, so I think we're not necessarily different from telemedicine. Um, but Because of the comprehensive care sort of package that we offer.

Um, I think that's one of the big things that makes it different. Um, the other thing is, right, because we're licensed and I'm not personally licensed in all the states, but between, um, the physicians, we are licensed in all of the states, but it can be really beneficial. So I have one patient that goes back and forth between Texas and Louisiana because she's got family in both.

And I can see her in both because I'm licensed in both places. Um, I have another, um, a friend of mine who is a movement disorders neurologist, um, and she works up in the northeast, but she has a lot of patients that travel to Florida and to Arizona during the winter months. And, [00:50:00] you know, she's like, I'm not licensed there.

I can't, you know, I don't know who they're seeing when they're there. Um, so I can actually see them while they're, you know, traveling. And then, and she knows like, okay, they're seeing a movement disorders. She's like, she called me recently and was like, my patient was just admitted three times with psychosis, right.

And I think it's probably. You know, maybe it's a urinary tract. I'm not sure, but because I'm able to see patients in that place, then I can, you know, see that patient and hopefully provide that that, you know, sort of continuity of expert care. So I think that's one of the big things that, that makes us different.

Also, again, we're not, it's not a subscription service, right? We're not asking you to pay anything more than what your regular insurance would be, um, and, you know, just the access to the care coordinators who are, are, you know, just amazing.

Eden Feldman: Someone asked, um, first, just a quick one. Does large, um, HMOs like Kaiser cover 

Dr. Jaime Hatcher-Martin: Synapticure? 

Eden Feldman: So, 

Dr. Jaime Hatcher-Martin: um, As a general, so, so as a general rule, no, so we are not in [00:51:00] network with with Kaiser that being said, and this is coming more from experience sort of in person. I don't I'd have to get back to you as far as whether or not we've gotten anybody approved from Kaiser.

But I know in the past, if there's a service that is not offered by Kaiser, then you can get exceptions to that. And so you can get approval for usually it's like, Oh, you can have, you know, 3 or 4 visits in a year and then every year it has to be revisited. Um, as far as if that's available or not, um, I don't know about specific.

I have not had any patients that are Kaiser, at least not to my knowledge. So I can certainly find out more about it. 

Eden Feldman: And then, um, someone asked, is exercise training covered by Medicare? Um, and I will just say I know it's not usually something that's necessarily covered by Medicare, but a lot of, um, plans, for example, like I know Humana does silver sneakers.

Um, so it's not necessarily the training per se, but it might give you an exercise program. [00:52:00] 

Dr. Jaime Hatcher-Martin: Yep. So check with your, you know, exactly like check with your actual insurance because a lot of times there are specific things that are covered or you may get discounts, right? You may get a discount for going to a gym.

Silver sneakers is a big one that's often covered. Um, but again, there's, there's certain programs that are popping up now. Um, things like prime PD that are actually covered under insurance. So I think, you know, as, as more and more insurance companies cover these types of rate, they understand. I mean, I, you know, you hate to be, um, sort of pessimistic about it, but, or, but, um, you know, when they start to understand that, like, people who are exercising are healthier, they, you know, right there in the hospital, less they're in the emergency room, less, um, you know, The insurance companies see right.

That's less money that we're spending on this person. So right. It makes sense to spend 20 a month for, you know, exercise classes. If it means that's that, you know, we're not spending the money for, you know, a 6 day hospital admission for a broken hip. I mean, I hate to put it into dollars like [00:53:00] that. But I mean, it's you know, it's true.

Um, so it depends, I guess, is the short answer to that. 

Eden Feldman: And, uh, so many state dietitians are not covered by Medicare unless you have diabetes or kidney disease. Is there any way to handle this for 

Dr. Jaime Hatcher-Martin: Parkinson's disease or this is something that we're trying. Yeah, we're trying more and more. A lot of times that comes into, um, in our, into our justification. Like if, if we can, you know, really give reasons for justification, it's like saying, you know, if there's been changes in weight, um, if it's affecting, um, you know, you're walking because.

You know, maybe you're losing too much protein, or maybe your medications aren't working because of that. So if we can tie it into a medical problem, then sometimes we can get it covered. Um, not always, but this is actually one of the things that we're trying to sort of roll into some of our services at Synapticure as well, because of those exact issues.

Eden Feldman: And then somebody asked, which I thought was, how does one know when one needs to see a psychologist, [00:54:00] neuropsychologist, or social worker? 

Dr. Jaime Hatcher-Martin: Um, that's a great question. Um. You know, it's hard to know sometimes. I think, you know, I try to always do screening during my visits to see, you know, I don't just say like, are you depressed?

Um, but I'll ask specific things, right? Because one of the most common things we see in Parkinson's is it's not, we don't tend to see as much of the sort of sad and blue, like crying, can't get out of bed sort of depression. A lot of times we see things more like. Agitation or irritability or what we call apathy.

Like I just I just I can't I just don't have that get up and go anymore. Um, or I don't enjoy the things that I used to enjoy. I'm not sad. I just, you know, I just don't enjoy those things anymore. So sometimes that those are the things that we really look for. There are all different kinds of scales and tests and things like that that we can look at as well.

Um, The other thing is too is depending, especially when it comes to a psychologist. Um, sometimes I tell people, like, if you think you might be interested, try it [00:55:00] out, you know, like worst case scenario, you say, like, not really for me, or I don't really think it was helpful. Um, you know, no harm, no foul. Um, but, you know, also.

Sometimes they, you know, listening to family members, if they're starting to notice some changes, because sometimes, you know, we're not aware of. What's going on because we're in the midst of it. Um, and that's not just true of things like psychiatry and psychology, but it's also true things. So one of the most common things is voice.

So there's been studies to show that people with Parkinson's have altered perception of how loud their voices. I can't the most common I think argument I hear in clinic is you don't talk loud enough. Well, you can't hear me. You know, you know, your appearance bad. Um, but we do know that people with Parkinson's have an altered perception.

And so one of the things is part of part of speech training is to kind of retrain, retrain your brain to speak at a more normal volume without feeling like you're yelling all the time. Um, and sometimes that [00:56:00] involves like real, just like literally looking at like how many decibels. is your voice when you're speaking, right, to give something objective.

Um, so sometimes it's things like that where family members are the ones that are reporting it as opposed to you yourself. 

Eden Feldman: Almost out of time, so I just want to ask because I know I'm getting great feedback in the chat. So if somebody lived, for example, in Georgia, can they request you on Synapticure?

Like, how does that work? Do they just get assigned someone who's close to them or can they say, I want to see? 

Dr. Jaime Hatcher-Martin: So, yep, so you can request somebody specifically. Um, I am licensed in Georgia. I actually live in Georgia. Um, so you can request somebody specifically. Um, if I am not licensed in that state, then there'll be another physician that's available.

Um, so you're more than welcome to meet with that person. Um, but yep, if you just go to the website, it's again, it's Um, And you can fill out some information. Also, your clinician can refer you as well. So anybody doesn't have to be your [00:57:00] neurologist. It can be anybody that can refer you as well.

It's the same website. Um, but yeah, if there's any questions, there's all kinds of places on the website where you can click on for more information. Um, and you know, we'll get you to the right place. 

Eden Feldman: Again, I encourage everyone to save the chat because we have put the, um, web address in there a few times.

So again, if you click on those three little dots, you'll be able to save your chat. As always, this was incredible. We have our tradition here at PMD Alliance, our wave of gratitude. Dr. Hatcher-Martin, this was wonderful. Thank you so much for sharing with us today. 

Dr. Jaime Hatcher-Martin: All right. Take care, everyone. Thanks so much.

Bye. Bye bye.