Frankye Myers: From Riverside Health system, this is the Healthy you podcast, where we talk about a range of health-related topics focused on improving your physical and mental health. We chat with our providers, team members, patients and caregivers to learn more about how to maintain a healthy lifestyle and improve overall physical and mental health. So let's dive in to learn more about becoming a healthier you.
Frankye Myers: Alrighty. I'm really excited to have with me in the healthy U studio today, doctor Suraj Rajan, neurologist with neurology specialists. And we're going to be talking about understanding Parkinson's disease. Welcome.
Dr. Suraj Rajan: Hey, thank you for having me.
Frankye Myers: Good, good. Welcome, welcome. All right, welcome to the studio. Today we're gonna be talking about the misunderstood condition, Parkinson's disease. Parkinson's disease affects millions of people worldwide, and while many have heard of it, there's still a lot of confusion about what it is, how it progresses, and what can be done to manage it. You may have heard of Michael J. Fox, the beloved actor who was diagnosed with Parkinson's disease at the age of 29. His journey and advocacy has brought significant awareness to this condition, showing that it can affect many. To help us understand Parkinson disease better, I'm thrilled to welcome you to the studio today. Tell me a little bit about how you ended up in this line of medicine.
Dr. Suraj Rajan: So, my pathway into neurology was a little bit indirect. I trained in India as a medical doctor. Then I went to the UK to train more in Parkinson disease and movement disorders. And during that training, I got a lot more training in Parkinson's disease, Huntington disease, and a bunch of other disorders, which are usually neurological disorders. But they're also. They have two main things. They affect youngish people, people who are in their forties, fifties or sixties, and they also affect the brain through a particular pattern of proteins depositing in cells and destroying the cells, and they have some genetic component as well. So this was my research area for a while while I was in the UK.
And then I decided, okay, I need more training in this. And that's how I, you know, immigrated to the United States and then did my residency here at two universities. And then, because movement disorders and all these motor disorders are still in the back of my mind, I went ahead and did a fellowship. And I'm currently, you know, practicing a movement disorder specialty within neurology. So I see my general neurology patients about 20% of the time, but 80% of the time, I'm a movement disorder specialist with a little bit of training more in dementia as well. And these patients have been amazing. So, yeah.
Frankye Myers: Right. Well, thank you for all that you do in this space. Let's dig a little deeper for our listeners and talk a little bit more about Michael J. Fox. He's so well known. He was diagnosed in 1991 and has since become a strong advocate in allowing people to see his journey, which was so brave of him. Talk a little bit about that. And I. His disorder specifically, which our viewers have seen him live through.
Dr. Suraj Rajan: Right. So Michael J. Fox is the, you know, sort of the type of patient who is usually rare, actually, to have a disorder at such a young age. In the late twenties or early thirties, he started having the disease. Thankfully, it is a small group of patients that have such an early onset of the disease, and I think we'll talk about that later in the conversation. But his impact has been amazing because he uses his celebrity status to actually be open about the diagnosis. He has destigmatized the condition quite a bit.
And you've probably seen, you know, I have seen the old movies, but I've seen more of his shows and other movie appearances where he's actually a patient himself. He doesn't play the role of a patient, but when he comes on, I can see the symptoms and features of Parkinson's disease or sometimes even the side effects of medications that he takes. And in interviews and other places where he goes, he's very open about the diagnosis, and he doesn't try to hide the disease or anything. And that brings great visibility. It destigmatizes a condition for other people, and there are other celebrities who have come and endorsed him because of that. And that increases the empathy towards Parkinson's disease and brings that struggle to the public. Right?
Talking about his foundation, yes, absolutely. It's probably the single most, biggest impact he has made in our field is the amount of money he has raised as a foundation. And being a celebrity himself, he has actually amassed a lot of other supporters to donate to this disease and its research. One of the biggest things that we have found is, you know, I go to these conferences where his organization actually brings in researchers together. So putting the best minds together to actually, you know, talk about the disease obviously brings out a lot of ideas. It doesn't necessarily mean that there is a cure out there that his foundation is funding. Now he's funding, or his foundation is funding so much of research, and even the smallest of the amount that he donates really comes out with, you know, brings out some fantastic interventions.
Frankye Myers: Let me ask you, is the disease on the rise or is to awareness? We're hearing more about it. So is it truly on the rise, and even dementia? And so, you know, for our viewers, you know, you think some of these disorders are more geared toward geriatric patients in certain age groups. Is there a genetic factor as to why he had that particular one at a younger age, as opposed to someone else who is old, you know, is older, or, you know, I hate to use the word older because I'm in that category myself, so, more seasoned.
Dr. Suraj Rajan: Right. So Parkinson disease, it is on the rise for a certain generation of population, actually. We don't know exactly why, though, but baby boomer generation is in that category of patients who usually are in the average age of patients who get Parkinson's disease.
So we have seen that that is actually on the rise. We don't know if that'll be the same with generation x or millennials, because we see that each generation seems to have some other. Some exposure with environmental factors or genetic factors that we don't know or we don't as yet have elucidated yet. So there is a possibility that it might be just on the rise for this particular generation and might be on the fall as we grow from this generation, move to the next generation.
Generally speaking, 80% to 90% of Parkinson's disease happens in the ages between 50 and 65. So that is usually when the symptoms usually start showing up. Now, when patients come to me, sometimes they have had symptoms for five years or more, and they might have never noticed it. And I usually ask them about these previous symptoms, and then I kind of guess that, okay, you've had probably the disease for about three, four years. You didn't really notice it. So there are some subtle symptoms that are not very obvious. We'll talk about that later. But the average age is about 62. So that is the usual age where you usually get the symptoms and you go to a neurologist and get the diagnosis. But less than 10% of patients can be younger than 40. So it does affect a small group of patients who are much younger in that age group. We have a lot more evidence that genetics play a lot more role in there, and it affects more males than females for factors that we don't exactly know yet. What happens with this is the disease seems to show up, like I said, in different generations, you'll see slightly different presentation. I think now we are more tuned to this diagnosis, and everyone knows about this.
There are a lot of people who have come out publicly, and social media is full of celebrities who actually have Parkinson's disease or are open about it. So I think we're knowing more about this disease now because we are hearing more about it. And neurologists in general have become better at diagnosing it early. So that is also possibly why we are moving the average age from the seventies to the sixties now, because that was the case in the eighties and nineties, when people were usually diagnosed at much later stages. Now we know more about the disease, so diagnosis is coming earlier.
Frankye Myers: Okay, is it just me or you know? So Michael J. Fox, at 29, he probably, to your point, had symptoms early on that he wasn't aware of before being formally diagnosed. It appeared that he was extremely. He had extreme deficits, visual deficits when we saw him. Is there an association with that and early onset, as opposed to late onset as it relates to some of the symptoms?
Dr. Suraj Rajan: So there are some genetic situations where you can have a few mutations in certain genes, and there are ten or eleven genes that we have found to have these monogenic parkinsonisms. What they mean by that is if you have a mutation in that particular gene, you're likely, you're almost certain to have the disease at some point in your life.
About ten or eleven genes have been identified in this category. And when we see patients that are as young as he is, we usually look for this. Now, I am not very knowledgeable about his particular case, so I can't really say whether he had genetic testing. My guess is yes, because he had gone to very good centers to actually get the early treatment. There is no clear evidence that these patients have more symptoms much earlier or like that. It's just that they usually present very similar. They have a longer lifespan. So obviously they do have the disease, they live with the disease for much longer, obviously. So if you get diagnosed in your twenties, you obviously are going to live up to your 80 or 90 as, for as long as you are expected to live anyways, but you'll be living with the disease at that point. So you have probably 40 or 50 years to live from that age, 20 or 20 something, right. But the average ages diagnosed, average age of diagnosis is roughly around 60. So if you have a patient diagnosed around that time, you're looking at a 20 year history of the disease, and they sometimes in some patients with these genetic mutations, you can have a lot more symptoms.
So it is possible that what the variation of the disease that he has, Michael J. Fox, has probably has slightly different presentation. But as far as I've seen him in shows and interviews where he presents his dyskinesias, his symptoms are all looking like the typical 60 year old or 70 year old patient that I diagnosed these days. Not very different as far as I can see.
Frankye Myers: That's really, really good information. Good stuff there. Let's talk a little bit more about symptoms. Signs and symptoms, early and late signs and symptoms.
Dr. Suraj Rajan: So, generally, just to kind of give you a background on what Parkinson disease does to the brain. Right. So what we know is we have nerve cells in the brain that form a network that actually help us to move. This is a very basic thing that humans do as well as every animal does on the planet. And dopamine, this chemical that we think as a pleasure chemical or a happiness chemical, really works in the human brain and animal brains to help them move, right? And this movement is usually, you know, a goal directed movement. You smell something good, you walk into the kitchen, right? You're looking for that, you know, good food out there, or you smell something pleasant, you want to feel who, or look at what that smell is from, or you are seeing something pleasurable, you're moving towards it. That is the whole point of dopamine being in our brain. In patients with Parkinson's disease, the cells that produce dopamine and use dopamine to help us move, these are the cells that get affected by Parkinson's disease. There are several theories about how this destruction happens to these cells, but generally what we find is there are clumps of proteins that actually kind of aggregate in these cells, and they kill the cells first. They weaken the cells so that the cells connections go away, so the network gets disrupted, and then some of these cells die. So the cells don't have other cells, don't have their friends to work with them. Right. So the network basically weakens, causing you to become slower, because the. Remember, the movement part of the brain is what is affected. And this is not like a stroke, where you suddenly go weak on one side or the other. It is more the movements are usually movements that are affected in Parkinson's disease are usually the ones that help us move naturally, like facial expression movements or gesturing with your hands, like what I'm doing when I'm talking now, or swinging your arms when you're walking, or even just normally being animated. These are the movements that get affected, usually with dopamine network being affected. Right now, when this happens, patients become slower, stiffer. And the way patients describe it is, I feel like a powered down robot where I don't have enough energy in my battery, so I can't move as quickly, so they become less agile, less nimble. That is usually what happens now. There are other networks in the brain that get affected. And like, for example, a part of the brain called the thalamus and a part in the back of the brain called the cerebellum, these two structures are also affected. So that is where your fine motor movements get affected. This is why you have that pill rolling tremor, just like that hand tremor that you often see with Parkinson's disease comes in. It can affect the head, it can affect the legs. So you can have tremors in many parts of the body, not just the hands. You can also have a vocal tremor. You can sometimes have even a face tremor or a tongue tremor. Either way, it affects movement. It slows you down, it makes you stiffer and slower, and the tremors start actually coming out as well. We know that a lot of pesticides, like, for example, roten on, which is not used anymore in our plantations and stuff, but a lot of pesticides used in large farms, plantations, and, you know, often you used to be used in crop testing and other stuff, have been known to actually cause this. So people who live in rural farmlands, people who get exposed to these chemicals as part of their agricultural life, or sometimes even like things like Agent Orange, which was used in Vietnam War, a lot of veterans got exposed to it. We now know some chemicals that were used in the Gulf War, or some chemicals that came out of burning stuff in the Gulf war have also some properties of causing this. We have even found that dry cleaning materials like trichloroethylene can have this as well. So there's a lot of studies that have shown these days that these chemicals that were exposed, or patients who are exposed to these chemicals, are probably at a high risk of Parkinson's disease. So this is the kind of the background of how Parkinson's disease starts. Now, as I mentioned, slowness of movements is what usually causes the, you know, patient to come to us. But when I ask patients, there are several things that they didn't really notice. So one of the common things that I usually ask is, how have your sense of smell been? Loss of sense of smell or reduced sense of smell can happen almost three or four years before you start having the tremor and slowness of movements. This is because those proteins that affect the brain also affect the nerve cells of the nose, actually causing the smell to go away. Now, the same proteins can affect the digestion nerves, causing you to have constipation. Some of these nerves can actually be affected in the anxiety centers, causing you to have a lot of anxiety. You can have depression as well. These are all features that you see early on, which patients don't tell you unless you ask them. So these are, like, subtle signs that I usually ask them and try to bring it out from the patients. If patients don't ask, you know, tell me that. I'll usually ask the partner or the care partner or the spouse, and they'll tell me, oh, yeah, he has had this problem for a while. And then I'll say, okay, these are actually features of Parkinson's disease, but they are under the surface of the water, kind of like an iceberg.
Frankye Myers: Right. Great, great information there. So, once diagnosed, what are some
of the treatment options available for Parkinson's disease?
Dr. Suraj Rajan: Right. So, in general, Parkinson's disease patients, you know, have the.
The goal of the treatment for Parkinson's disease is give them dopamine, because dopamine is
that type of, you know, that. That part of the brain that gets affected in Parkinson's disease.
Dopamine is what, the main thing that is lost in these cell. In these patients. Right. So giving
them dopamine as a pill, like levodopa, is a classic example of that pill or giving them dopamine
substitutes. Right. You can give them medications that act like dopamine as well. So these are
the common two groups of medications that we give them.
As time goes by, patients might need more and more dopamine. So there are different ways of
giving them dopamine. For example, if somebody has so much, such a long history of Parkinson
disease and needs to take a lot of dopamine, you can give them, and they don't want to
remember to take the pills. You can give dopamine in an infusion through their gut, so you can
put a tiny tube into their belly and then give them as an infusion. Now, another form of dopamine
that has not hit the market yet, but we're actually looking carefully into this, is a subcutaneous
injection of dopamine. So you'll basically wear a pump that gives you the dopamine 24/7 so you
can actually forget to take the pills, and then that'll be okay because the medicine is being given
to you through a skin injection. So that is coming to the market as well. The other, you know, uh,
therapies that we usually do in these patients. Right. After a while, if the dopamine is, dopamine,
still works, even decades later, but your disease has progressed further. So, yeah, now you
need more and more dopamine. Right. So dopamine is not enough to control all of your
symptoms at this point. So you want to see if you need advanced therapies at that point. And
this is where we bring in deep brain stimulation or focus ultrasound or other advanced
technologies to actually help them. DBS is something that you can do. DBS is deep brain
stimulation, where you can give the stimulation to the brain the same way as dopamine does,
but without the dopamine. So the patients can either cut down on the amount of dopamine or,
you know, take less dopamine or not even remember. If they don't remember to take the
dopamine, dopamine, it's fine, because DBS is still working for them. So they kind of offset the
need for constantly taking dopamine as well.
Frankye Myers: And all of that would be individualized?
Dr. Suraj Rajan: Oh, yeah, absolutely. Absolutely.
A lot of these treatments are focused on the symptoms. Right. So if patients have stiffness and
slowness, dopamine is a fantastic medication to do. If they have tremors, you can try other
medications, like tri xifenadil or benstropine. These are medications you can use for tremors.
Dopamine still works for tremors as well. And if tremors are not controlled by medications, focus.
Ultrasound is a procedure that you can do where you send sound waves into the brain without
drilling a hole or anything, and then that can actually treat the part of the brain that causes a
tremor. So that is an option there. In patients with other symptoms outside the brain, like bladder
problems, sexual dysfunction, skin changes, anxiety, other things, you need to treat them
accordingly. With each of those individual symptoms addressed specifically, either the
neurologist treats them or we can send them to the primary care doctor or appropriate care
partner to actually, you know, treat them.
Frankye Myers: Okay, great, great, great information. This is amazing how far treatment is common, the various options, and how things have evolved. What about some lifestyle changes? Are there things people with Parkinson's can do to help manage the condition outside of medication, therapy, or brain stimulation?
Dr. Suraj Rajan: Yeah, absolutely. So lifestyle changes. One thing I tell all of my patients when I'm counseling them is two things. Right? Number one, PD needs lifestyle change. There's no option for you there, right? This is an option. This is not an option for you. You have to change your lifestyle. Number two, what I tell them is exercise is not an option for you anymore. It is going to be your lifestyle. Because we have seen that patients who are generally active do far better than patients who just spend their time on the couch and be sedentary. So patients who are outdoorsy, patients who are exercising, you know, at least a certain amount of time per week, they do much better. So the studies have shown that you need to have at least an active time of about 170 or 150 minutes a week. That's not a big number, honestly. If you divide hundred 50 by five days a week, you're getting 30 days. Right? 30 minutes. Right. So 30 minutes a day is all you need. Any kind of aerobic exercise, like walking briskly, or running on a treadmill, or jogging or biking, all of that works. All that repetitive aerobic exercises, really what they do is they help, number one, help connect the brain cells better. You cannot give them new cells yet. We don't have the technology, but exercise is known to actually make these cells connect better. It also improves blood flow to the brain, reducing their blood pressures, reducing all the other risk factors. It also causes increase in a lot of hormones like endorphins and serotonin and a bunch of other monoamines that are helpful in Parkinson's disease. So we have found that even dopamine levels go up after exercise. So, in a way, exercise has been known to slow down the disease. That is the only thing that has been known to actually slow down the disease. We don't have any medicines or technology that actually changes it. There are some specific exercises that we recommend, like look into rocksteady boxing. Tai chi is another one we sometimes recommend. Yoga is something that has been tested in small groups, and there is also some dances, like argentine tango, that have been actually tested in these little groups. And they have found that patients who do these things, like rock City boxing or argentine tango, actually do better compared to other patients. So plenty of options out there. Regarding food. We don't have any specific food recommendations. Generally, what we recommend is, is patients who have Parkinson's disease should avoid taking a lot of proteins along with the medications that they take, because medications and proteins can sometimes interact, and medicines may not work properly if protein is in their belly, that doesn't mean that they should completely give up protein at all. They can take the protein meal, either a protein shake or protein drink, or maybe even a heavy meat based diet. You can eat that, but leave at least an hour between the meals and the medication. So that is the only dietary advice I'll give them.
Frankye Myers: Okay, we've hit this a little bit, but anything that you want to reiterate as it relates to the progression of the disease and how does Parkinson's disease typically progress over time? We've hit that and some of the things that we've talked about. Anything you want to highlight from that perspective?
Dr. Suraj Rajan: So Parkinson's disease rarely, you know, kills people. It is not a terminal illness, but it is a progressive illness. If you're diagnosed around 60, you have a 20 year horizon. Now you are going to live mostly around 80, up to 80 years, because that is the average life expectancy these days with men and women in the United States. So we are going to. If you are diagnosed at 60, you're going to live up to 80. So plan for that 20 year timeline. It is a slow, progressive disease. The first five years are pretty mild, usually manageable with medications, not disabling. But if you're closer to retirement or closer to some sort of major life change, plan ahead. This is the thing. You already know your timeline, so plan ahead. That is a big thing that I will usually tell them regarding progression. By the 7th or 8th year, you might have some memory problems that affect you in your daily life. Classically, the memory issues that you see are, it slows the speed of thinking, just like how Parkinson's disease slows your movements, it also slows down how fast you can think. So that is something that you might want to think about. It doesn't cause a memory loss like Alzheimer's disease does. It is not like you will forget who you are or you forget the day and time or year of the, you know, month of the year, that sort of stuff. It is more going to make you slow in thinking. So you have to plan for those things. So if you're in a high skilled job, think about it. If you are going to get this disease and in seven or eight years from now, you're going to have to take a step back from your job. Plan ahead. Right. If you're a young person with a disease, by the 15th year or so, you usually are going to have a lot more false difficulty with walking, sometimes even swallowing difficulty. So again, as time goes by, we will intervene as much as we can. Some patients might need cane or walker or something like that. If that happens. At that point, my job mostly is to prevent those things from happening. Right. So I emphasize on disease modification by lifestyle changes, exercise, and intervening as much as possible as soon as possible.
Frankye Myers: Okay, good stuff there. So if someone has been recently diagnosed, what advice would you give them? Because it does sound like a lot, and then how can their caregivers best support them with this disease?
Dr. Suraj Rajan: So if you are recently diagnosed, when I give the diagnosis to somebody, what I usually do is I'll give the diagnosis, I'll give them some materials to read, and I'll tell them, here's the thing. You just learned the diagnosis. I don't want to start you on anything, but I want you to learn about the disease. Ask me questions. So come back in a few weeks or so. I'll set up an appointment for them for a second visit where they want to have a, you know, discussion with, you know, their partner should be there, if possible. So I usually tell them, hey, talk to me as much as you can about the concerns that you have. So, learning about the disease is absolutely crucial because unlike, you know, other diseases which might have just, you know, singular focus where, you know, like, for example, a heart disease, it is just the heart that is affected. You don't really see a skin change from a heart disease or, you know, a brain change from a heart disease right away. Whereas Parkinson disease hits you in multiple levels. Right? Like I said, it can affect your sense of smell, affect your sense of, you know, you know, it can affect your bladder, sometimes constipation, erectile dysfunction is something that you see. So I talk about everything as openly as possible so that patients become comfortable with discussing these things. So learning about the disease, learning about the multifaceted nature of the disease, all aspects of the disease, is very, very important. And you are your best advocate because. Because of this disease being such a, you know, wide reaching disease, a lot of doctors don't know all of these features, right. And I don't, you know, you know, worry about that from a primary care perspective. I'm not really worried that primary care doctor missed a particular diagnosis or not. It is my job to teach them. Right. So I tell them, you are your best advocate. Rely on your doctors or your healthcare providers to really know everything. They're also learning as we speak. Right. And invisible symptoms are a big thing. So talk to your care partners about it. If you have a problem with your sexual dysfunction or some sort of skin problem, talk to your partner about it, because it could be part of Parkinson's disease and there might be something that they can actually do about it. Right. Having a good relationship with your neurologist is absolutely key. I don't have to reemphasize that. I would say if you are diagnosed with Parkinson disease by a primary doctor or a neurologist, I would say still see a movement disorder specialist. Because we are trained to do more about Parkinson's disease than the average neurologist, because we have some extra training on it. It doesn't mean that you should always go to a movement disorder specialist. If you are from a far off area like Smithfield or somewhere, you can see a neurologist locally and then come to us for an annual visit and just make sure that you are up to date on your medications, things like that. Same thing with partners, too. I will tell partners to come to the appointments at least once every year so they can actually see what entails and I can educate them. Plus, they might be able to bring up some stuff that the patients forgot or really even didn't notice. Right. The other thing I will usually tell care partners, particularly, is join support groups. They are fantastic. You will learn from other care partners. You will learn from other patients as well. You don't have to drag the patient to every support group meeting. You can go by yourself and learn from them too. Right? I go to these support group meetings and I the biggest thing that I enjoy in support groups is when patients talk about their problems without, you know, me being there. So I can kind of listen in and then say, oh yeah, I feel that that is actually different than what I noticed. So it'll be a different perspective. That teaches me a lot. So I'm pretty sure patients will love hearing from other patients. Care partners will love from that as well.
Frankye Myers: Wow. A lot of great information and this is really going to help our listeners and help educate around this disease. Thank you so much for taking time out of your busy schedule to join me today and for sharing all of this invaluable information. And I want you to tell our viewers how they can reach you if they want more information.
Dr. Suraj Rajan: Right. So easiest thing to do is to go online for, you know, Riverside online and then search for Parkinson disease. And you will see either my colleague, doctor Butler's name, or my name or the whole team. So we have two neurosurgeons who do dbs and focus ultrasound. We have two movement disorder specialists within our practice at Riverside. ll our neurologists are trained in Parkinson's disease. We have a comprehensive care system as well. So online is the best way to do it. If not just reach your PCP, they can reach us easily.
Frankye Myers: Great. And to our listeners, thank you for listening in. If there are topics you're interested in learning more about, please email your idea to recidestrong.
Dr. Suraj Rajan: Thank you so much.
Frankye Myers: Thank you.
Frankye Myers: Thank you for listening to this episode of Healthy You. We're so glad you were able to join us today and learn more about this topic. If you would like to explore more, go to riversideonline.com.
