Peter, age 70, had been living with essential tremor (ET) for more than 30 years before he was diagnosed and began seeking treatment. “Looking back, the onset occurred at the Naval Academy. But I was pretty clueless about what was going on. Three decades later, it was a relief to finally have a diagnosis and learn that essential tremor wasn’t something I could control. But I do wish I’d known sooner – as many others have shared with me, there can be so much unnecessary concern and worry associated with essential tremor. Doctors frequently minimize it and are just not aware of the detrimental effects it can have on someone’s life.”
His symptoms included issues with shaking hands and voice, hearing, and swallowing. And like many people with the condition, Peter says he inherited it; many in his family have suffered from ET, including his mother, grandmother, daughter, sister, and a nephew.
Peter’s plight led him to start his own patient advocacy organization, HopeNET, which is passionate about making a substantive change in the ET community and increasing awareness of the condition and treatment options. “The most common ways doctors have been treating essential tremor are medications and deep brain stimulation for severe cases,” said Peter. “But often, neither of these options work, or there is only partial improvement, or unwanted side effects. So the recent FDA approval of focused ultrasound for essential tremor is a very promising development.”
Peter’s FUS Experience
Peter first learned about FUS in a 2011 newspaper article and then attended a presentation by Dr. Neal Kassell of the Focused Ultrasound Foundation later that year to learn more about the procedure. He researched FUS further and was ultimately treated in August 2016 at the University of Maryland Medical Center in Baltimore.
“I was really so impressed, first of all,” he says. “With the way the procedure was conducted, with the way the team worked together, with what Insightec has done. I thought I knew a fair amount about focused ultrasound as far as essential tremor goes, but it’s just fascinating. Like how they are trying to pinpoint the ‘VIM,’ this tiny area within the thalamus, which is so small itself to begin with… and then to be successful, it’s really amazing. I am constantly looking at deep brain stimulation versus focused ultrasound, for example, and I am convinced at this point that focused ultrasound is better.... And it’s obviously much less invasive.”
Peter reports that since his treatment he is feeling great, and his right hand – which used to shake so severely he had trouble feeding himself – now does not shake at all. “So many people have told me that there’s even been an improvement in the tremor in my voice. That wasn’t intended, but I’m very happy about that. I’m beyond satisfied with the procedure, very grateful.” He notes a few common side effects such as numbness in his lip and balance issues in his gait, but both have improved with time. “I hope this [FUS treatment benefit] lasts forever.... I’m happy I did it.”