What happens when your hands refuse to listen to your brain? For Alexandra Lebenthal, essential tremor was more than a neurological disorder, it was a lifelong challenge that affected everything from drinking water in meetings to giving public speeches. In this deeply personal episode, Alexandra shares her journey from a childhood marked by frustration and embarrassment to becoming one of the first patients in the U.S. to undergo focused ultrasound, a groundbreaking, non-invasive treatment that changed her life.
Phil Stieg: This week, in a special episode of “This Is Your Brain,” we’re going to hear the story of one of our patients here at Weill Cornell in her own words. Alexandra Lebenthal had lived her entire life with a neurological condition called essential tremor, where every time she tried to move her hands they would shake uncontrollably. As a successful Wall Street Executive, Alexandra managed a high-profile career and active social life all while struggling to manage this distracting and sometimes debilitating condition. At the age of fifty she made a courageous decision to try a new, still experimental treatment – becoming only the second person in America to be treated with a non-invasive technique called Focused Ultra-sound. In the decade since she first had the treatment, she has become an enthusiastic advocate (and one might even say “evangelist”) for this high-tech procedure, eventually becoming the first person to undergo it twice, having the other side of her brain treated to quiet both of her hands. I asked Alexandra to tell us her story from the beginning…
Alexandra Lebenthal: I first presented with essential tremor when I was three. It was very embarrassing and frustrating as a child. I remember crying to my mother. I must have been about 10 and crying because it had been embarrassing. I don’t think anybody made fun of me. (Somebody must have, though…) But I do have moments of recalling great frustration. I feel like I was more and more conscious of it as an adult, because particularly as my career advanced you know, you’re on display. People notice you. And so that’s where it really became increasingly problematic for me. Because I had been living this with this since I was three, I just always understood that my brain could not tell my hand what to do. It had its own life. As a grown up, I would hold my hands under the table or sit on them. Wine and alcohol does help. So if I was going to go meet somebody for drinks, for work, I would get there early and just down a half a glass of wine to have it be somewhat calm. I think I did a pretty good job most of the time when I could control it. I do remember once being in a meeting with a very high-powered private equity guy, and I was so thirsty that I just had to… I had to water. And so I asked for a glass of water, and this guy looks at me and he says, “Is your health okay?” Which is, that’s what you fear, somebody asking you about it. And that was one of the few times I said, “Oh, you’re looking at my shaking hands”. But normally, I would do anything I could to not have people notice. Because also, if you have to start to talk about it, it’s this odd affliction that people just… You don’t want to have to go down the path of explaining what it is and why you have it. And there’s nothing that’s really terribly wrong, but it’s just something that you have to live with. And I think most people with essential tremor do what they can to not call attention to it.
Phil Stieg: Dr. Michael Kaplitt is the Director of the Movement Disorders service here at Weill Cornell Medicine
Michael Kaplitt: I always say that essential tremor is the most common disease that no one’s ever heard of. People don’t realize that essential tremor affects about 10 times the number of patients that are affected by Parkinson’s disease in the US and around the world. Parkinson’s, you’re talking about a million to a million and a half patients in the US. You’re talking about over 10 million people that have essential tremor. Because essential tremor patients don’t really have any major problems other than the tremor with movement, it’s generally easy for them to hide it because they just adjust their lives so that other people don’t know. In stressful situations, in business situations, in social situations, it can be very difficult. And so people often withdraw. They often don’t go into those situations, which is a big part of the problem for them. And when they are there, they try to make accommodations so that people don’t know.
Alexandra Lebenthal: It just became something I was more and more self-conscious about. I would give a speech, and I couldn’t pick up a glass or bottle of water. And your mouth gets dry giving a speech. At one point, I remember giving speech, and I turned around and took a sip. So it was just really, really frustrating. I was relatively young, so I knew that people would think, What’s wrong with her? Does she have Parkinson’s? Is she nervous? Somebody once said to me, “I thought you were hungover all the time.” That was an interesting one. It was a very frustrating part of my life.
Phil Stieg: Hands that shake when you try to move them might not sound like a serious problem to those who haven’t experienced it. Dr. Kaplitt gave us some perspective…
Michael Kaplitt: For patients, essential tremor is particularly debilitating because it prevents you from doing almost any normal activity with your hands. For some people, it’s a major professional problem if you use your hands for a living, if you’re a surgeon, if you’re an electrician, if you’re a dentist
I had a kid once who wanted to be a professional golfer, right? I mean, you could imagine all of these things that you need your hands for a living. But even if you don’t use your hands in that way for your profession, think about everything we do in the modern world, shaving is obviously very difficult for people. Brushing your teeth, using a spoon for anything like soup, et cetera, is almost impossible. Cell phones. Imagine holding a phone and trying to text or tap, your hand just can’t do it. So there’s almost nothing in our life, that is unaffected if your hands shake every time you try to move. So that’s fundamentally why patients need help.
Phil Stieg: Essential Tremor can start in early childhood and tends to get worse as you get older. What actually causes it is still a mystery.
Michael Kaplitt: So we don’t know what the initial cause is. We do know, though, that the consequence of whatever’s going on is that there’s an area in the brain called the thalamus, which is like a relay station in the brain. And I often use the analogy of Grand Central Station, right? There’s multiple tracks in Grand Central Station, and people come in, and then they want to go to Miami, or they want to go to Chicago or Florida, wherever, and they go on a specific track. The thalamus has very different parts, and it relays very specific information. So there are some parts of the thalamus that relay information for the ability to move, some parts that relay information for sensation, for mood, for all kinds of things that the brain is responsible for.
For essential tremor, the region of the thalamus that is dysfunctional – that goes bad – it is the central node in a complex circuit that is responsible for proper coordination and stability. So we do a smooth, controlled movement when that’s functioning properly.
In essential tremor, this area starts sending bad information to the rest of the brain. So instead of doing a smooth, controlled movement, you do this jerky tremorous movement. And if we can stop it from sending that information to the rest of the brain, you can free up circuits that are normal to function more normally. And that’s the idea behind the MR-guided focused ultrasound, that we can actually ablate or destroy this spot and stop it from sending this bad information. And once you do that, You literally get an instantaneous response.
Phil Stieg: The technology for focused ultrasound was originally developed by a company in Israel, and was just being tested for use in the United States. Alexandra was prompted to reach out to us following a chance encounter on social media.
Alexandra Lebenthal: What ended up happening was that I was on Facebook one day, and I saw a story about someone in Israel who had the procedure. And this guy had incredibly bad tremor. I mean, could not function at all. And I watched this thing just in amazement. This was 2015.
So I went to see Dr. Kaplitt, who explained to me that it was still new. It actually wasn’t FDA-approved yet but walked through what the whole procedure would be. And so, I left feeling like, wow, there’s this magical thing out there that could be the answer!
Michael Kaplitt: The idea behind focused ultrasound is that you could deliver ultrasound energy through the scalp, through the skull, to your target. And you could actually ablate or destroy it.
It’s very similar to when we were children. I always use this analogy. If you had a magnifying glass on a very sunny day and you’d burn a hole in a leaf or a piece of paper. What that did was it focused the beams of sunlight on one spot so that you could put your hand on the magnifying glass and it’d be fine. But at that spot on the paper or the leaf, you add up the energy of all those beams of sunlight, and you could deliver enough energy to burn it.
Same thing with the ultrasound. We have this helmet that has a thousand different sources of ultrasound. They’re all coming through the head from a different angle, that meet in the middle. Each beam, as it goes through, is very low energy, doesn’t do anything to harm the brain. But the point at which these thousand beams converge, you could add up the energy of a thousand beams of ultrasound at the target spot and deliver enough energy to heat that area up and literally ablate or destroy it. And when we do that, we will see the tremor get better right away.
Phil Stieg: It takes courage to decide to be one of the first to undergo an experimental new treatment. Or — maybe you just get to a point that “enough is enough.”
Alexandra Lebenthal: A few months went by. I was going through a crazy time at work, and I thought, my life’s out of control. My hands are out of control. Maybe – let me just do this thing! I mean, it really was crazy – in that I almost feel like it was because of all these outside influences that I just thought, I’m just going to dive in and do this. Because I decided so quickly, I didn’t really have time to get really scared or freaked out about it.
Michael Kaplitt: So the spot that we’re trying to hit, in total, we’re trying to ablate a roughly 4 to 5 millimeter in diameter spot Unfortunately, there are structures, that are right next to the area we’re targeting, that could affect your speaking, that could affect your sensation, et cetera. And if we get into those areas, you could have slurring of your speech, you could have numbness or tingling in your hand. But if we stay too far away from those areas, you won’t get benefit. So we don’t have a lot of breathing room. We really have to thread the needle to get the area that we have to target without being too afraid of getting near these structures. I always say that my view of my job is I don’t get paid to be a chicken, and I don’t get paid to be a cowboy. Somewhere in between is the right answer. We have just right without doing too much.
Alexandra Lebenthal: Honestly, to me, as traumatic as having your head shaved if you’re a woman. And I do remember between that and then the helmet, which they screw in your head, I passed out. And my husband said to me, you don’t have to do this. And I said, I just had my head shaved! I’m doing this! There’s no turning back!
The procedure itself, it was interesting. The amount of time that the beams of ultrasound are actually delivered to your brain is a minute amount of time relative to the whole procedure. Having done a lot of TV commercials and radio commercials over the course of my career, it’s almost like that. There’s prep, there’s makeup, there’s making sure the camera angle is right, and then you come in for your 60 second shot.
What is so exciting and fascinating about it is that it’s real time. You’re seeing it happen. You have to see it happen. You have to be fully alert because they have to make sure it’s working. So you’re in this MRI, you’re lying down. They give you clipboard with a spiral to draw and a straight line. I always say that if you have a central tremor, drawing a straight line is like drawing… It looks like a seismograph of a earthquake. It’s just impossible. And the spiral is all over the place. So that’s your baseline.
You go on the machine, you have the first zap, as I call it. They bring you out, have you draw the straight line and the spiral again. It’s a little bit better. Keep putting you in and out. And then finally, I want to say, as good as it’s going to be, but it’s perfect. I mean, especially having lived with this. The idea of being able to draw a straight line and draw a spiral is, for somebody who was never able to do that, completely miraculous.
What was then even more so is you sit up and are given a Dixie cup, I mean, a small paper cup of water to drink. And inside, I remember just thinking, Oh, right. There’s no way. And the amazement as I held this tiny paper cup and lifted it to my lips. I mean, I’ve never been able to do that before, and it seems so minor and minute, but I never in 50 years was able to do something like that. So it truly It was a miracle. I remember that night I would periodically just lift up a cup and move it back and forth. I actually videoed myself just because It was so incredible to see my hand doing that. It’s immediate, and that is what is so exciting about it.
Michael Kaplitt: Well, focused ultrasound really is like science fiction. I mean, I show in my talks a picture of Dr. Mccoy from the TV show Star Trek, 1968, a still shot where he had a helmet on his head that non-invasively treating some brain issue. And it looks remarkably similar to this Insightec-device, to this focused ultrasound device. And so it is truly science fiction. That’s what they used to do, right? They’d wave something over somebody, and all of a sudden, they were better. Everybody said, Yeah, that’s just a television show. That’s not too far off from what we do now.
Brief Musical Interlude ends
Phil Stieg: So Mike, when you were looking for patients to try out this brand new procedure, why did you decide to go with Alexandra? What stood out about her case for you. What stood out and said, “This is a safe bet”?
Michael Kaplitt: I think there were several things. First of all, Alexandra was young and healthy. Her tremor was really bad, and she was fed up, and she had the right attitude for this. I’ve done a lot of experimental surgeries and experimental treatments. And one of the things that’s really important early on is to get the right patient, and that’s not just the right patient, medically and surgically, but also psychologically and personality-wise.
Having somebody who’s not just a patient, but a real partner in these things makes an enormous difference because we are all working things out a bit together. And Alexandra, it was clear to me that not only did she have great need, but she had the right attitude where I thought that we could really do something special together here.
Phil Stieg: I’m interested in your take on the emotional response. Can you go into that a little bit more detail about the breadth of emotional responses that you’ve experienced?
Michael Kaplitt: I cannot viscerally understand what people go through because I don’t have that disease, right? But because this has been affecting people for so long, and the stigma, and the changing of your life to hide it, and all of that goes into those emotions, right? When we get the tremor stopped, literally on the table, I can’t tell you how many patients will sit there and say, Oh, my God, or that’s amazing. I have patients who They start crying, literally. And also because patients, it’s almost like a post-traumatic thing, right? When I give them a cup and say, here, drink, they’ll refuse because they say, no way.
And I say, just do it. I’ll be like an insistent parent. Just do it. And then they’re amazed by it, right? Because they’ve been so trained emotionally to not do things that it’s inconceivable that they can do things now. That’s one of the most remarkable aspects to it, the joy that you see in people. When they’re sitting there eating and drinking with that hand that they haven’t been able to use for years or decades. And the smile for them, their families and others, are really quite remarkable.
Alexandra Lebenthal: You know, the interesting thing about it also is that it’s “elective” brain surgery. So I’ll start to tell somebody, “Oh, I had this brain procedure”, And they look very sad and are ready to be sympathetic. And then I said, No, it was a great thing, and it was elective, and it changed my life. So it’s very different than having to have surgery. As you said, it’s not going to take my life having to have surgery because if you don’t, there will be something much worse, potentially, obviously not even living. So this is doing this because it’s to make your life better.
Phil Stieg: That leads me to the question I wanted to ask you is; what advice would you give to other people that have a central tremor. Would you wait until you’re 50? If you knew you had it when you’re 30 and your hand was shaking really badly, what would you do?
Alexandra Lebenthal: There are a lot of people who, obviously, they’re nervous. They have a lot of questions, but it’s almost like they want me to tell them not to do it. And So I do ultimately say, I’m not going to tell you not to do this because this changed my life. So if you want to keep talking about everything that could go wrong, I’m not really I’m the right person to have this conversation. I’ve always viewed it as having this amazing opportunity to help change somebody else’s life. I mean, you guys are doctors. You do that all the time. But an individual like me doesn’t often get that opportunity. I’m always excited to talk to people about it and to go through, just as I did with you, these minor moments that are miracles.
When you have a central tremor, you don’t take all of the basic things that people do for granted because you can’t do them. And after you’ve had targeted ultrasound, you still don’t take them for granted because you’re amazed that you can do them.
Phil Stieg: Alexandra Labenthal and Dr. Michael Kaplitt. I’m extremely grateful to both of you for having been able to spend the time with you.
Alexandra Lebenthal: My pleasure.
Michael Kaplitt: Thank you very much.
Closing theme
Phil Stieg: Shortly after recording this interview, Dr. Kaplitt received news that the US Food and Drug Administration has just approved the use of focused ultrasound for the treatment of tremor on both sides of the brain in patients with advanced Parkinson’s disease. This is exciting news for Parkinson’s sufferers everywhere.
I congratulate Mike on his leadership role in the clinical studies that led to the FDA decision, and I am grateful to Alexandra Lebenthal for her continued support in promoting this transformative treatment.
