Transcript: Facing Parkinson's Disease & Fighting Parkinson's with DBS
From mild resting tremors to freezing, stiffness, and loss of motor control, the symptoms of Parkinson's disease progress relentlessly over time. Dr. Michael Kaplitt, Director of the Movement Disorders Program at Weill Cornell Medicine, along with his patient Elizabeth Larsen, explore how quality of life can erode over the years -- and when it's time for a life-changing surgical option.
Dr. Stieg: About 1 million Americans have Parkinson's disease and every day that number continues to grow. Right now there is no cure for Parkinson's, but there are newer treatments helping patients achieve a much greater quality of life and scientists around the world are collaborating to find a cure. One of those neuroscientists and clinicians is Dr. Michael Kaplitt, a trailblazer in the research he spearheads to find new ways to combat this disease. Dr. Kaplitt is vice chair of research and professor of neurological surgery at Weill Cornell Medicine/NewYork-Presbyterian Hospital. I also want to welcome Dr. Kaplitt's Parkinson's patient, Elizabeth Larsen, who will generously share her experience with one of the most effective treatments for this disease. Mike and Elizabeth, welcome and thank you for being here. Mike, let's start with you. How common is Parkinson's disease, both in the United States and worldwide?
Dr. Kaplitt: Yeah, well general estimates are that 1 to 1.5 million people have Parkinson's disease in the U S. 50,000 to a hundred thousand new patients a year are diagnosed and then live with this often for decades Worldwide, the estimates are about 10 million or more.
Dr. Stieg: I find that interesting in the sense that if we look at other diseases that are talked about every day in the news, in terms of breast cancer, the numbers are actually much bigger in Parkinson's disease than it is for breast cancer and even for stroke and Alzheimer's disease.
Dr. Kaplitt: Parkinson's is a lot more common than people think. I think it's reached a level of public consciousness that's different now than it was when I started my practice, in part because of various celebrities and known people who've had the disease. I think the Michael J. Fox Foundation obviously has raised the awareness of the disease dramatically and I also think among caregivers, particularly nonspecialists in the general community, I think that there is a greater understanding of the disease. So we're recognizing it more and so I think it is getting out there, but I agree that most people don't realize quite how prevalent it is.
Dr. Stieg: And as I understand it, there's a spectrum of impact of the disease on an individual's life.
Dr. Kaplitt: Parkinson's disease is part of a spectrum of what are considered movement disorders. It is caused by a loss of cells in the brain that regulate movement. The brain is composed of lots and lots of circuits, very much like our computers or other things, but much more complicated obviously. But there are specific circuits in the brain that regulate movement and for reasons that we still don't fully understand in the majority of patients, some of these cells start to die over time with age. The truth is is that these cells that make a chemical called dopamine die in all of us with age. And in fact there are estimates that if the human population lived on average to say a hundred or 110 years old, possibly 50 to 80% of us would develop Parkinson's. So what Parkinson's is really an acceleration of a process that already happens in most people for reasons that we are increasingly understanding but not fully understanding it.
Dr. Stieg: And then it manifests itself how?
Dr. Kaplitt: In particular for Parkinson's are series of problems; first with movement, the most obvious that people are aware of is tremor because Parkinson's is known as a tremor disease, so this is often what's referred to as a resting tremor. A lot of people have tremors when they reach for a drink. That can be a very different thing which we might or might not talk about, but Parkinson's is a tremor. When people are just sitting there not doing anything, they start to tremor and it's a certain characteristic. Tremor. Tremor is one. Freezing where patients have difficulty actually initiating movements and then stiffness where the muscles are very stiff. Those are the three classic movement problems in Parkinson's. It then evolves over time. People can have problems with walking where they can't move their feet effectively. They can develop balance problems where they can start falling. Eventually they have problems with fine movements like buttoning a shirt or using utensils and then ultimately in a, in a subset of patients in in a smaller population, but a significant population of patients, they can develop other symptoms such as memory problems that can be akin to Alzheimer's problems with blood pressure instability.
Dr. Stieg: Is it important to catch the disease early so they don't progress to those cognitive changes?
Dr. Kaplitt: Yeah, so for many of the treatments particularly that we're about to discuss, there is a window that is optimal for us to be able to do that precisely for the reasons that you said. When they get to that stage where there are substantial problems with cognition, with memory, depression, other things, it can create real challenges to bring in newer therapies, particularly surgical therapies or cutting edge therapies. The other reason why it's good to recognize the disease early is that there is some evidence that even the medications that are used to treat the movement disorder and that is still the first line of treatment is medication. The medications are mostly designed to replace this lost chemical of dopamine in the brain, which then normalizes these circuits for a period of time. If you can use those medications earlier, there is some evidence that some of these medications can actually slow the disease a bit, but not by much. And obviously that's the major research effort is to slow the disease.
Dr. Stieg: It's become so common these days. Early on, I just want to get you to distinguish the difference between essential tremor and Parkinsonian tremor cause I, you know, last thing we want people to worry about as they got essential tremor, they've got this chronic debilitating disease.
Dr. Kaplitt: So it's a fantastic point. So most tremor patients do not have Parkinson's disease. So if you simply have a tremor, don't immediately assume that you have Parkinson's disease. Essential tremor is actually a tremor when people start to move. So it's usually not at rest. It's not a tremor that just happens. People look totally normal until they go to reach for a cup or use a spoon to eat soup and then their hand starts to tremor like crazy and then it stops when they're, when they stop moving. Interestingly, essential tremor, which is also a disease we can help with surgery, is five times more common than Parkinson's disease, but most people don't know it. It is by far the most common movement disorder, one of the most common neurological diseases. But most people don't know it because you could be having dinner or socializing with some of the essential tremor and until they did something you would never know they had the disease unlike Parkinson's. So yes, and there are other tremors, so don't immediately assume it's Parkinson's because it's a tremor, but it is something that obviously needs investigation.
Dr. Stieg: Elizabeth, tell me what symptoms led you to start seeking medical help?
Elizabeth Larsen: I actually have both tremors and I have herniated discs in my neck. I was having problems with my left hand and my neck was bothering me. So we started with the MRIs and we found the herniated disc in my neck and we thought that was it. And I went for physical therapy and it didn't stop the shaking in my hand. So it wasn't until I went to a neurologist who looked at me, I said, you know, the shaking in my hand bothers me. But when I sit down at night and I have a glass of wine, I go and it stops. He goes, you have essential tremor. So at first the essential tremor was diagnosed. After that was diagnosed, I didn't want to think that I had Parkinson's, but I knew there was something else going on cause I was, I was tripping. I was occasionally tripping. My balance was starting to go. My movements were slow.
Dr. Stieg: Can you describe what the slowness really felt like?
Elizabeth Larsen: It felt like I was the Energizer bunny running out of batteries because it would take, now it takes me a minute to get both my sneakers on and tie my shoes where before the surgery that I had, it was taking me 10 to 15 minutes just to put on shoes and tie them. And there were times when I just tied them just enough to get them on and I'd go to the gym and I'd be like, all right, I need to shoe tie because it's just too much. So, and that, that's just one. And that was everything I was doing every day was slowing down. The one thing that really got me going to my neurologist and having to admit that I had Parkinson's was my facial expressions were like blank. And I was working with this one gentleman who knew me very well, and we worked together every day he'd be explaining something to me and he'd go, do you understand what I'm saying? I'm like, yes, I understand what you're saying. I'm just thinking about it. He goes, all right, and every day we would go through this. And then I finally realized that my face wasn't making any movements.
Dr. Stieg: So you lost that emotive capability to give visual contact and dialogue with your friends in addition to the normal verbal contact?
Elizabeth Larsen: Yes.
Dr. Stieg: So Elizabeth came to see you and it was obviously pretty transparent that she had this Parkinson's disease, but for people listening to this, what should they know are the potential treatment options?
Dr. Kaplitt: When people are first diagnosed with Parkinson's, which is often six months to two years after they've actually noticed things. The story that Elizabeth just said is very common, you know, before they actually come to attention. The mainstay of therapy is first medications, as I said earlier, designed to replace this lost opening in the brain. And they usually work very well to the point that if someone does not have a good response to medicine early on, it either means usually that they're either not getting enough medicine and they need to push it or they have something more complicated going on than simple Parkinson's. So the vast majority of routine Parkinson's patients will respond well to medication and usually they'll take these medicines maybe three times a day and most of their day will be just fine. What happens over time though is that first the disease continues to progress, so there's more cells being lost and the disease worsens and the brain starts to change in response to the medicines, which is a common problem in the body to all medicines.
Dr. Kaplitt: That combination of the changing brain from the medicines and the progression of disease makes the symptoms worse and over time, after a honeymoon period of a few years usually of doing well. The symptoms worsen and people start to develop complications of medicine that we haven't talked about yet, and that can be, for example, a thing called dyskinesia, which is an involuntary movement. People can't sit still. They experience very strange movements, some of which can just be a social problem, but they can be bad enough that they are exhausting. It's like running a marathon all day because they can't stop moving. Patients can develop other problems. Because these drugs are not just going to the circuits we talked about earlier, but are going everywhere,there are other areas of the brain that are affected by dopamine that are not problematic in Parkinson's, but that influence things like reward satisfaction, which often leads to addiction. So patients can develop real compulsive behaviors from these medicines. Even addictive behaviors can be exacerbated or worsened by these medicines.
Dr. Stieg: Addicted to the medicine or addicted to other substances?
Dr. Kaplitt: Both. So for example, patients who might, like to go to Atlantic City on occasion or Las Vegas for two days or, and, and spend maybe $500, all of a sudden they're losing a hundred thousand dollars that they don't have because they can't stop gambling. You know, people who are drinking, you know, a lot of times people who are doing normal activities that have an addictive component, but they're not addicted to it, can now all of a sudden develop these problems in addition to being a bit addicted to the medicines themselves. So they can also develop problems with um, hallucinations or with depression or anxiety or other things because they are not targeted exclusively to the areas that are controlling movement. So as patients develop these complications of medicine over time and worsening symptoms, they suddenly are taking more medicines, then they're taking medicines to counteract the side effects of the other medicines. And it becomes this spiral for a lot of patients. And because the average age of onset is usually around mid-50s to mid-60s and because we're doing so well at keeping people healthy in other areas with all the advances in cardiovascular medicine, et cetera, by the time these patients reach five 10 maybe 15 years into their disease, most people otherwise are still pretty healthy and have many years of life left and yet they are being terribly disabled by the inability to control these problems at that point.
Dr. Stieg: Comment a little bit about the importance of the neurologist who manages the medication component and their relationship with the surgeon and the timing of that. You indicated that you could wait too long and then I'm assuming surgery is the next option after medical management and you don't want to get access to the patient too late in their disease process.
Dr. Kaplitt: That's correct. I think everybody agrees that right now surgery is not the first therapy when someone first has symptoms and yet, as you said, there is a window. There is actually evidence increasingly that even earlier surgery may be beneficial to patients, but that is still an emerging concept. However, it is very important and I think that neurologists, because this has now been out there long enough, I think it is very important for neurologists to understand these windows and understand what the right timing is for patients to seek out an alternative. So for those patients who have done well with medicines, but now instead of taking it three times a day and spending most of their day doing well, when patients start taking medicines five times a day or more, and yet the medicines are still not lasting long enough. Early in the disease, patients will take medicine, they'll kick in maybe 30 minutes after they take the medicines and it'll last three or four hours, which is most of your morning, let's say then you take another pill, does the same thing and so you get to each meal and you're doing fine. Um, there's a concept in Parkinson's called on and off. And on is that state I just mentioned when everything's working well. Off is when you're very Parkinsonian and not doing well. So early in the disease, if the average person sleeps eight hours, that means out of your 16 hours of waking time, you'll spend about 15 hours early in the disease, doing pretty well in your onstage with just little bits of time that you're not doing great. By the time patients reach the point of considering surgery, often that is flipped. They may be taking medications five or six times a day and now it will take longer to kick in. Sometimes they won't last as long. They'll develop a randomness where sometimes the medicine, they'll have a great day, they'll have a bad day other times, and then they develop all these complications. When that starts to happen, not years after it's happening, when that starts to happen, but they're otherwise doing pretty well cognitively, medically. That's really the point in which we like to see them because that's when we can help the most.
Dr. Stieg: Elizabeth, you tell me now, did you go through medical management and then end up with surgery? What was your pathway?
Elizabeth Larsen: Kind of. I went on, I think it's the older medicines. As you all know, exercise is important for Parkinson's and I, because when this all started, I had those herniated discs. I'd been going to physical therapy for 10 years, so I exercise all the time and I exercise at home and I think that did help me make my medicine last a little longer because I was very stubborn and I always thought that the surgery was my last resort, not the resort coming in. And my neurologist would bring it up every time I went to see him and he'd go, Now, want to talk about it? And I would go, no, not yet. I'm not ready yet. And then eventually it got to the point where it was taken 15 minutes to put on a pair of shoes and I said, all right, what do I have to do?
Dr. Stieg: So it was a quality of life process that led you to cross that Rubicon and say, all right, it's time for surgery.
Elizabeth Larsen: And I was diagnosed with Parkinson's. I was an early onset, so I was like in my early forties probably when I got diagnosed.
Dr. Stieg: And give me a sense of timing between the diagnosis in your early to mid forties and when did you make the decision to consider surgical intervention?
Elizabeth Larsen: It was like eight years.
Dr. Stieg: Is that the average time that it takes?
Dr. Kaplitt: The majority of patients I see are usually between five and 10 years into the disease. So this is right in the middle of that.
Dr. Stieg: During the time period you were going through the medical management and then finally coming to terms that you needed surgery. How did you keep your spirits up?
Elizabeth Larsen: Friends and exercise. In my office at home, I have a stationary bike and I was able to work from home three days a week because I was having such a hard time when I was working.
Dr. Kaplitt: So I'd like to just say one thing about exercise because Elizabeth brings up a very important point. We all know how good exercise is for a lot of things in our body, but there's actually really good scientific evidence from laboratory studies that show that exercise can actually increase growth factors in the brain that are, that that will specifically protect these at risk cells and slow the progression of the disease. So, in addition to all of the general health benefits and obviously the mood elevating benefits that have been shown with exercises, as you just heard, there's actually good evidence that it can slow things down specifically for Parkinson's disease. So it has tremendous benefits for this disorder.
Dr. Stieg: The question I have for you, was do we consider exercise just getting up and walking? Because it took you 10 minutes to put on a shoe. So what kind of exercise were you talking about?
Elizabeth Larsen: Uh, I do stationary bike, I go for golf lessons and I swing a golf club. I also box.
Dr. Stieg: And you did that pre-treatment, pre-surgery?
Elizabeth Larsen: Yes. When I loved boxing before I found out I had Parkinson's and then when I found out it was good for Parkinson's, it was just the perk.
Dr. Stieg: Is, is there some family history in boxing?
Elizabeth Larsen: No, the New York Sports Club had it at the time, so it was just fun.
Dr. Stieg: Let me ask, you did all these things, but it must have taken a long time to do and I'm assuming you worked eight hours a day.
Elizabeth Larsen: I did, but this boss that I had, um, he was, he didn't care when I worked and he knew, he was like, you know what, you gotta do. You know what needs to be done, I don't care if you work in at midnight or if you, so I mean, even when I came in the office, I couldn't get in before 10, And there was one day I worked in One World Trade, and I used to get off the bus on Church Street and I would walk past the Oculus and you know, I'd use the blocks in the sidewalk to help me walk. And there was one day I couldn't do it and I called him and I'm like, you got to come down. He goes, what? I go, I just, I can't do it. And he came down and we had a chat and then he helped, you know, I held his arm and we walked back in. And I was following the blocks and he goes, “but you’re doing this so great.” I'm like, “I know I was just having a moment and you needed to come down, but—
Dr. Stieg: Everybody should have a boss like that. You, you were blessed.
Elizabeth Larsen: Yes.
Dr. Stieg: Just to put people's mind at ease, is there a genetic component to Parkinson's disease or an exposure factor?
Dr. Kaplitt: Yeah, that's a great question. So there are many genes that our community has identified that can influence Parkinson's disease. There is a small subset of maybe 10 to probably at most 15% of Parkinson's patients that actually have an inherited form of the disease because of a specific mutation or change in a gene. Very much like other inherited diseases like cystic fibrosis, et cetera. So it can actually be inherited that way. Those tend to occur earlier. And, there are potential, um, treatments being developed for that. In fact, only two weeks ago at our center, we did a gene therapy, which has been obviously an important area of our research for many years. But we did a gene therapy for the first time in the world to correct an inherited form of Parkinson's disease to actually fix the genetic abnormality. Um, and we've actually, this is the first time we've discussed this publicly, but that's something that we did so the world is evolving that way, but for the vast majority of Parkinson's patients, they don't have an inherited form of the disease, but we still believe that many of these genes that we are identifying are important and relevant to the disease.
Dr. Kaplitt: I liken it to heart disease. Early on in understanding heart disease, there were these inherited families that had heart attacks at the age of 20 or 30. Brown and Goldstein who won the Nobel Prize for understanding the genetics of heart disease, figured all of this out through these rare families, but what they figured out about HDLs and LDLs that everybody now knows about but didn't in 1980 were derived from what we knew about those patients. It still influences all of us even though we don't have inherited or genetic abnormalities. And I think ultimately that's what we are finding in Parkinson's. That these same genes that when they're grossly abnormal can lead to inherited forms that, in the rest of us, natural variations may predispose us to other things that are going on in the environment. Which leads to the second part of your question. That is something that we understand less about. We do know that certain pesticide exposures can actually lead to Parkinson's. In fact, there are certain pesticides that we can use to create Parkinson's in animal models and so some people, if they have, if they've lived on a farm, if they've had exposure to a lot of pesticides, that can actually be a risk factor. We believe that that probably extends to exposure to certain types of chemicals, et cetera. Beyond that, we don't understand as much about environmental components, but we assume that they're there and we just have to better understand them.
Dr. Stieg: Dr Kaplitt, thank you for explaining what Parkinson's disease is, how it is treated and its inevitable progression and Elizabeth, it means a great deal to our listeners to understand firsthand from a patient what they experienced both physically and emotionally. For all of our listeners, I hope you will join me for part two of this conversation when Elizabeth decides to move ahead with deep brain stimulation. A state of the art neurosurgical procedure which transforms her life.
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Part 2: Fighting Parkinson's with DBS
Parkinson's Disease patient Elizabeth Larsen gives a deeply honest view of her Deep Brain Simulation (DBS) surgery to control her tremors. We learn what it feels like to have electrodes in the brain and what happens when patients want to change their tremor management software program.
Dr. Stieg: I'd like to welcome back our guests, Dr. Michael Kaplitt, Vice Chair of Research and Professor of Neurosurgery at Weill Cornell Medicine, NewYork-Presbyterian Hospital, and his patient, Elizabeth Larsen. In our previous episode, Dr. Kaplitt gave us a very clear understanding of what people need to know about Parkinson's. His patient, Elizabeth shared how Parkinson's increasingly impacted her quality of life over eight years. When her symptoms became more severe, she decided to overcome her fears and have deep brain stimulation performed by Dr. Kaplitt. Today we'll learn why that decision was life changing. Describe the process that Elizabeth went through to get the deep brain stimulation.
Dr. Kaplitt: So when patients come to our attention, the first thing that I want to do is make sure that I agree that they actually have routine Parkinson's. They don't have some more complex disorder that might make their ability to respond to surgery and to undergo it safely. So once I confirm that, and that's usually just based on a clinical exam in my agreement with the neurologist, then we discuss what we believe surgery might or might not do for that individual patient. It is critically important that I really understand my patients well. So we spend a lot of time together discussing many of the questions you've asked this morning about how it's affecting your life, et cetera. It's not just to establish a social connection, which is nice. I need to understand more about her life so I know how my treatment can impact her life. Otherwise there's no point in having done it.
Dr. Kaplitt: If I can on some rating scale that I can publish a paper on show that someone's better but it doesn't do anything for their life, then all I've done is an academic exercise. So we spend a lot of time doing that. And, and the things that I mentioned earlier, we look at how the complications of medicines are affecting them and whether we can make that better. We look at how the disability from, not responding as well to medicines can make them and whether we can make them better and the things we can usually help or we can help increase the number of hours per day they spend in their good or on state, we can help reduce these fluctuations. The randomness of the responses, like what you heard earlier when she suddenly can't move unexpectedly, same time the day before she was fine. We can smooth that out, so that doesn't happen as much and it's more consistent. And often we can reduce the amount of medicines patients are taking while we achieve these benefits precisely because we're bypassing the need for those medicines. So we look at all of that.
Dr. Stieg: So it's a combination of putting these electrodes in and trying to wean them off the medications that she didn't seem to like.
Dr. Kaplitt: And that's a process. It's very important for the patient and the neurologist to understand that surgery is only the beginning of the treatment, not the end. That this is a process that takes time. Unlike a lot of other areas of neurosurgery where the process pretty much ends when you come for your postoperative visit. This takes weeks and months to optimize the programming of these stimulators to the individual and to slowly wean them off medicines. Patients do very well when you gradually adjust them. When you do things suddenly, the brain hates that and they don't do nearly as well.
Dr. Stieg: Elizabeth, can you describe what it was like coming into the operating room, having electrodes put in and in battery packs implanted in and underneath your skin?
Elizabeth Larsen: Getting prepped for the surgery, that first surgery where he asked to put those electrodes in, I felt like Darth Vader once he put that frame on my head. Everybody tried to help and make me feel better and I did and I held my own, but my stepson was sitting with me and I'm like, I really feel like I belong in Star Wars at the moment because it's just—
Dr. Stieg: It's not natural.
Elizabeth Larsen: No, I have to say the surgery without the anesthesia, with just the local, when he's putting those electrodes in, my brain is actually—
Dr. Stieg: So it's important for people to know you're awake for the surgery.
Elizabeth Larsen: Yes you're awake cause you have to do exercises with the neurologist in the operating room. I thought that was pretty cool except for the part where you shot it up to so that you could figure out the max. Oh my God, that part is, it's not the worst, but my lip started twitching. My eyes started twitching. I was like done. It wasn't so bad without the anesthesia and it wasn't— it was bad hearing the sounds like the sound of that drill, that drill is God awful. The drill and even worse than the drill is a staple gun. Alright, let's staple it closed.
Dr. Stieg: But all manageable.
Elizabeth Larsen: For me, they were manageable. I asked him a couple of questions. He goes, “Now is not really the time.”
Dr. Stieg: You get the electrodes in and the batteries are implanted. What's the timeframe between getting them in and then finding the appropriate setting for the patient?
Dr. Kaplitt: So in our center, we usually wait about two weeks after the batteries are put in to start trying to turn it on because we found early in my practice that when we tried to turn patients on too early, they just had very unpredictable responses because the brain was still healing from the trauma of having put these things in the middle of the brain. You know, putting electrodes in as minimally invasive as this is, it's still traumatizing the part of the brain you're going through and it's got to heal. Once it heals, they respond much more reliably. So we wait about two weeks after the initial surgery. And then we usually have patients come back roughly every two weeks thereafter. And in our experience, it takes anywhere from three visits to seven or eight visits. So if you do the math, if that's a roughly every two weeks, anywhere from six weeks to three or four months to optimize this.
Dr. Stieg: Like the medicine, is there a half-life? How long does this treatment last?
Dr. Kaplitt: Well, it's a great question. So what I tell patients is that to the best of our knowledge for most patients, the benefits are indefinite as long as their disease goes on. But that doesn't mean they will be the same indefinitely. Because remember it is still a progressive disease. So patients may get worse, but they will still be better with this than without this. And the reason we know that is because we can turn it off. So I have had patients that have said, I don't think I want my batteries replaced cause I don't think it's doing much for me anymore. Four or five years out, let's say. Okay. And then all of a sudden, a few months later we get an emergency phone call. Oh my God, my battery died. I can't move. My tremors are terrible. You got to replace them tomorrow because they didn't realize that they would be that much worse. We try to avoid that, but that's why we say we think it works indefinitely, but it may not keep you the same indefinitely.
Dr. Larsen: And my understanding was that max that you found in that first surgery, that's like the range that I have to go.
Dr. Kaplitt: Correct, but, but that was so much higher than anything we would ever need to use that. That's usually, if you get the electrodes in the right place, that's usually not limiting to people.
Elizabeth Larsen: Yes. That's what I thought.
Dr. Stieg: Was life transformed after you got the battery?
Elizabeth Larsen: It was awesome!
Dr. Stieg: How so?
Elizabeth Larsen: Was just so wild because I'm sitting there and I'm shaking and I'm shaking. All of a sudden, my whole body is calming down and my hands aren't shaking and I, my lip used to shake all the time. My lip wasn't shaking. Everything just settled. Then we went for a walk. It was just amazing. So she did one program the first time I went. I also asked her if I could have some of the ranges so I could bring it home. I got the, okay. She made me show her in the office that I knew everything because she went, all right, show me what he told you, and I did everything and you know, the right side for the left side and left side for the right side. But I had a limit as to how much I could do.
Dr. Kaplitt: It's actually been a big technological advance in recent years compared to when I started my practice is that the newer batteries and pulse generators give us a lot more options to let the patient have more control over some of their programs. Obviously we don't give them total freedom because they could hurt themselves if they overstimulate but we can set lockouts and prevent it, but now we can let them go home and try different things in a way that can accelerate the optimization that we couldn't do before.
Elizabeth Larsen: Yeah. Second time I went, she took the first program and I'm sitting there like in the chair like I am now and all of a sudden I start shaking and I look at her. She goes, I turned you off. She goes, I had to out the program and I wanted to swap something else, and I'm like, all right, all right, so then she put it back on. Then we went out for a walk and I looked at her and I went, I don't like this one. She goes, why? I go, I don't know. I just don't feel right. So we listened. We went delete, delete. Now we're talking about me and my brain and my head, and we're like, yes, please delete. So she deleted. Then she found another one, which is the one I'm still using now with, you know, just the upping the range. And from that, I mean from the minute that first programming even happened, I started having all major benefits. Like even typing in my phone. I could type fast, I could type normal again. I could tie my shoes again. The stupidest things, folding laundry. I hated doing laundry because it was taking me two hours to fold. Now I'm back to 20 minutes and now I try to speed through it to see how fast.
Dr. Stieg: What do you tell family members and patients how to manage the problems going forward if they don't have this kind of response?
Dr. Kaplitt: No, it's a great question. I mean the fact is that this is not a cure for the disease. It is a better treatment for symptoms for patients who are the right patients for this approach, but obviously the real hope is in the cutting edge therapies, these new sort of more biologically targeted therapies that everybody's working on that will hopefully take all the benefits that we can do now with things like brain stimulation and even get beyond that as time goes on.
Dr. Stieg: Basically what you're saying then is a patient like Elizabeth is always going to remain in the sphere of a neurologist or a neurosurgeon like you and you and your team are there to help them manage the problems if they arise and when they arise.
Dr. Kaplitt: Correct. And I think it's important for patients to understand that and for caregivers,
Elizabeth Larsen: And you told me right up front my walking and my balance may not, it'll be better because of the other stuff being addressed, but it wasn't necessarily going to be fixed.
Dr. Stieg: Tell me what that feels like. As I'm sitting here listening to you watching you, I'm just imagining an electrode being in my brain, somebody tweaking a battery on my chest wall and all of a sudden I feel like a different person. What's going on emotionally?
Elizabeth Larsen: Feels awesome. It feels…
Dr. Stieg: So it feels good?
Elizabeth Larsen: Yes, because yes, because before the surgery I would sit there and I'd be fidgeting and I'd be moving and my toe would be cramping and my whole body had shaking and my lip would be shaking. And now it's like I can do everything normal again. But when I sit in that office and then sometimes I'll look her and she'll be like, I'm changing something, just wait. You know? Or you know, or my, I'll be like, my foot's cramping, can we do something about it? So you have to be honest about what's going on when you go in for the program. Otherwise it's not going to work.
Dr. Stieg: Not everybody's lucky like Elizabeth, either you're not a candidate for DBS or you put them in and they don't work or like we talked about, they could fail over time. What's the next option?
Dr. Kaplitt: The truth is, is that if you're very careful in how you select patients, I think the issue is, as you said earlier, for those patients that you feel are not candidates for one reason or another, the question is why. So if there is a concern, for example, about the device or about the invasive surgery, there is a new therapy that we're, we've been pioneering and a study that we're finishing right now. To use a noninvasive approach to target these same structures in the brain, but using ultrasound that goes through the skull and targets the area of the brain that we're interested in. That does not involve any implants in the body, but it is also not adjustable. It is a permanent change to the brain. The ultrasound literally destroys an area of the brain that's not functioning properly to free up the rest of the brain to function more properly.
Dr. Kaplitt: It's like throwing a car that's in neutral into drive. As long as it's a neutral can't work but you throw it into drive and now it can work so by destroying an abnormal area of the brain you can take the brain out of neutral and free up the rest of the brain to function. So this is a noninvasive procedure. And for those patients where putting devices in their body could be a problem, let's say they have diabetes or they have other concerns about infection. Many Parkinson's patients are exceedingly thin and having devices in their body can be an issue or if we're concerned about blood thinners or other things that a lot of older patients are on, then this is something that is right now experimental for Parkinson's. It is actually FDA approved for the past several years for that other disease we talked about essential tremor and that is something we are doing a lot of.
Dr. Kaplitt: But for Parkinson's right now it's experimental, but we are nearing the end of the study and if that looks good, that will be a potential option for patients. And then like I said, there are newer therapies being looked at for. We've pioneered gene therapies that changed the way cells function. Others are looking at cell based therapies and these are designed to actually sort of restore the function of the brain, not just destroy these areas. And I think that as those evolve, they may show promise, particularly for some of the things that DBS might not help as much with. But that's still in the evolving phase.
Dr. Stieg: But yeah, that's one thing I wanted to clarify. I mean I think we all remember Ronnie Reagan Jr's speech about STEM cells, you know, promising cures. What, 20 years ago. What, what do you think the timeframe is going to be for these new new forms of therapy?
Dr. Kaplitt: I've always been very hesitant to use the term cure for anything because we don't cure a lot in medicine, let's face it, we cure broken bones, we cure infections, we don't cure a lot else. When somebody gets a stent in their heart or bypass, we're not curing their heart disease, which is treating it right. There's still the disease process is still there, so I think it's an unfair standard. I know everybody wants a cure for Parkinson's. That's rational to want that, but I think it's an unfair standard to hold new therapies to. I think that we can do a lot more for patients in our lifetimes with these new therapies that are being evolved even if we don't absolutely cure the disease. I think the number of advanced clinical trials that are going on right now in gene therapy in particular leads me to believe that within the next five years, in all likelihood we will probably see our first gene therapy and maybe more than one approved for more general use.
Dr. Kaplitt: I think cell therapies will be a little bit behind that because it's taken time. Cell therapies are a little more complicated. They have...
Dr. Stieg: And by cell therapies you're talking about STEM cells?
Dr. Kaplitt: STEM cells for example. The problem is that cell therapies have enormous promise because they can actually replace cells that are lost and very almost nothing else can do that. So it's got a great romantic concept behind it to fix the damaged brain in many diseases. The tough part that has been very challenging is not to create the cells that you need to create. That scientists have been very good at creating dopamine producing cells. It's getting them to incorporate into the brain. You know those dopamine cells that control the movement circuit that I told you about earlier. Those are developing and incorporating into our brain when we are in our mother's womb, right as we're growing. It is a real challenge to take that 50 60 70 year old brain that's been hardwired for decades and that is now diseased and say let's put some cells in and get them to reestablish those very same connections by a completely different process. That has been the big challenge because if they don't establish the right connections, they can actually create more harm than good. So I think the promise is there and there are a lot of human experimentation that is now beginning, but it's very hard to put a timetable because of these challenges.
Dr. Stieg: You would agree though that the Michael J. Fox foundation, other foundations, the NIH have been exceedingly supportive of these new innovative therapies?
Dr. Kaplitt: Absolutely. All of these patient groups, Michael J. Fox, the American Parkinson's disease association, the Parkinson's Disease Foundation, there are many of them out there. Fox's obviously the largest one and then the government have been very supportive. Interestingly, the Defense Department has been very supportive of Parkinson's research over years for a variety of reasons, so that's why we've made a lot of the advances we have in why we're on the cusp of some of these new therapies actually reaching general use potentially. But one of the interesting things, for example, Fox Foundation I think has realized, as have many of these other foundations, is that while the research is very exciting and obviously as both a surgeon and a scientist, I want people to be interested in the science, but they realize that they can do a lot for patients right now by providing information for them, by providing advocacy. And that's been tremendous.
Dr. Stieg: Elizabeth, what message do you want to deliver to people that are just early diagnosed with Parkinson's or considering advanced therapies?
Elizabeth Larsen: If you're just being diagnosed with Parkinson's? The first thing I would tell anyone is to at least get to a neurologist and in the meantime exercise and keep moving until you figure out what long-term therapy you want and then if you are a candidate for DBS surgery, it's all about the quality of life. The reason I came to Dr. Kaplitt is because my neurologist was relentless at suggesting it constantly. I should have been there two years sooner, but I was too scared to go and find out about it.
Dr. Stieg: And you’re living testimony about how safe this surgery is.
Elizabeth Larsen: Absolutely.
Dr. Stieg: Mike, I know that Elizabeth is heavily into boxing, but I understand there's also dance therapy?
Dr. Kaplitt: The idea behind boxing and behind dance therapy and these others are all very analogous, very similar, which is moving helps movement. There's no question. And so any type of regular movement can help, but things like boxing, dancing, combine movement with coordination and so there are many different ways that the brain can help stabilize our body, can know where it is in space. The circuits that we're influencing are just one of them. You also, your eyes see where you are, your feet feel where you are and those influence different circuits. And so the value of all of these is that it can help the brain to use all this other information that it's getting every second to try to help jumpstart circuits that can improve some of these things like balance, as you mentioned earlier, that is not necessarily helped as much by brain stimulation. So that's why I, I'm a big believer in all of this.
Dr. Stieg: Dr. Michael Kaplitt and Elizabeth Larsen, I want to thank you from the bottom of my heart for giving such a thorough description of what Parkinson's Disease is, hope to people that have it. And I think the message is this is about quality of life and there's no reason for somebody to suffer the way they suffer with Parkinson's Disease given how common it appears to be in America. Thank you so much for being here.
