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“My Visible Shaking Always Embarrassed Me” – Alexandra Lebenthal’s Story

By: Alexandra Lebenthal
September 26, 2017

The positive impact of focused Ultrasound technology in treating essential-tremor

Living with uncontrollable shaking since I was 3 – I’m now 53 — I struggled to pour drinks, eat food, shake hands, write notes and swipe my subway MetroCard my whole life. I was painfully self-conscious of the visible shaking of my arms and hands all through school and adolescence, dating and graduating. Even when I became a successful CEO in the investment community, that shame continued during the many professional and social events I attended. It’s amazing I could keep the condition a secret for most of my life.

I had a public life. My grandfather started one of the major investment houses on Wall Street and I moved into that business early on. Any time I was giving a speech or attending an event, which was very often, the adrenaline would often make the shaking even worse.

In my business, we ask people to invest money with us. If my hands are shaking, and I seem so nervous, customers can lose trust. And there was never a moment I wasn’t concerned about holding anything – a cup or a pencil in a meeting – or shaking someone’s hand, especially someone new. Also, I was on television frequently and had to be extremely conscious of keeping my hands tightly squeezed together on top of the desk or hidden below. This somewhat odd “double life” was exhausting; I lived it every single day. When I first became public about my condition, many of my colleagues were shocked.

Essential tremor is the most common of all movement disorders, afflicting more than 41 million patients worldwide1, more than Parkinson’s; it’s often miss-diagnosed or not diagnosed at all. Unlike Parkinson’s, essential tremor is not life-threatening. In the list of horrible problems one can have, it’s not so serious, but it has defined my life, and “shaken” my confidence, for as long as I can remember.

The tremors mostly exist in my hands, and the condition worsened as I got older.  Tremors were often treated with medication, but it was never able to attack the tremors directly, and results were just not that good. I had tried various medications, working with my neurologist, Dr. Frank Petito, but none of them worked long-term, and some had side effects that were just as bad.

Other than medication, the only other choice had been deep brain stimulation (DBS), which involves placement of an electrode into the brain and implantation of a battery under the skin in the chest to power the therapeutic electrical impulses. I simply was reluctant to go under the knife.

Finally, in 2016, my options changed when during my regular research for relief, I saw a video about MR-guided Focused Ultrasound (MRgFUS), also referred to as high intensity focused ultrasound being used in Israel. Dr. Petito then told me that clinical trials were going on in New York specifically to treat essential tremor.

He introduced me to Dr. Michael Kaplitt, vice chair of research and neurological surgery at the Weill Cornell Medicine Brain and Spine Center. Mike and his team were “early adopters” of MRgFUS for this use and had spearheaded the acquisition of this technology at the Center.

Dr. Kaplitt and his colleague – my friend, Dr. Phil Stieg who runs the Brain and Spine Center at Weill Cornell – had been studying the technique’s application to a variety of neurological disorders ranging from Alzheimer’s disease to addiction, some of which were already available in other countries. Because of their research, the Federal Drug Administration (FDA) approved the use of this new non-invasive procedure for essential tremor and I became Dr. Kaplitt’s first patient post-approval.

MRgFUS relies on MRI technology to pinpoint the exact location in the brain where these tremors originate and then directs the ultrasound to destroy the problematic tissue. I was one of the first patients to undergo this treatment right after approval of its use in August 2016. Weill Cornell is still one of the very few places it’s available in the country.

Before the lengthy, but not painful treatment, the team did some tests to check my ability to write and draw, as well as understand and answer oral questions during normal conversation. Then, they fitted me with a spooky-looking helmet holding 1,000 transducers or beams of ultrasound waves. Individual ultrasound waves, like those used to check pregnancies, don’t have enough energy to damage brain or other tissue.

When they are combined and directed at the same small area of the brain from different directions, they create a huge amount of energy designed to damage that specific part and alter specific behavior, in my case, the shaking. I had to be awake during the procedure and engaged in conversation so that, moment by moment, as they identified the right spot in my brain, they could avoid doing damage to anything else, like my ability to talk.

And then, as we went through the almost five-hour procedure, the team and I watched as my tremors disappeared!

With MRgFUS, adverse events overall are infrequent. I experienced a few days of mild discomfort. I had also shaved my head for the procedure, and spent several weeks that summer wearing bold and beautiful head scarves. I was no longer trying to hide my situation. For one thing, I was amazed every minute at the difference between my right hand and left hand. (To date, the FDA has only approved one session of MRgFUS, so patients are treated to impact the dominant side, in my case, the left side of the brain for my right-handed side.)

And I wanted to share my relief with anyone suffering from the same condition – there are still so many people who don’t know about this. Parkinson’s gained much attention due, in part, to the efforts of actor Michael J. Fox, who has been very open about his struggles. But essential tremor, with its high occurrence, is often mistaken for Parkinson’s or not diagnosed at all.

Here it is, a year later.  I still marvel at my right hand which doesn’t shake and that is huge. I often forget that I don’t have to grip my pen so hard just to write a note, type on my phone or hold my coffee cup with two hands. It has, quite simply, changed my life.

Alexandra Lebenthal is a financial expert and one of the most recognizable women on Wall Street. She was the CEO of Lebenthal & Company until June 2017 when the company sold its asset-management and woman-owned brokerage business to South Street Securities Holdings. She lives in New York with her husband and two children.

1http://www.londonmdc.ca/research/tremor.html

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