The 15 patients who enrolled in the Focused Ultrasound Foundation-funded essential tremor (ET) study at the University of Virginia are true medical pioneers. Prior to their focused ultrasound treatment, most had lived with ET for decades. All had become severely disabled by it. Each believed they had run out of viable treatment options until learning about the promise and possibilities of focused ultrasound. Bravely stepping forward to join the study, each identified three outcomes they wanted to experience.
The person with whom patients shared their goals was Diane Huss, PhD, who performed neurologic assessments before, during and after focused ultrasound treatments. “As part of my assessment, I asked every patient to identify three personal goals,” she explains. “If you call this procedure a success, what would it be? What would it look like to you?”
The answers were quite interesting and some were similar. “Use a screwdriver came up frequently,” Huss says. “So did being able to eat without spilling. We take that for granted that you can eat without spilling.”
Huss says that most patients set goals related to basic life activities—brushing their teeth, sitting at the table, eating a bowl of soup, and not being self-conscious and worried about spilling and feeling like they can eat out in public. Goals also included being able to walk across the room carrying a cup of coffee, to sit at the table and serve food and to cook from a recipe and measure out ingredients.
“Some of the more emotional goals— for example, being able to handwrite a letter to my grandsons who are serving in Iraq and Afghanistan – were quite heart wrenching,” Huss says.
Following treatment, at least two patients – an architectural draftsman and postal carrier – met their goal of returning to work. According to Huss, even with just one hand treated, the draftsman could do precision handwriting again and the postal worker could bundle up his mail.
Working closely with study patients was a very emotional, connected experience, says Huss, and left her feeling admiration for them all. “They’re a wonderful group of people, every one of them. They all have unique aspects in their lives and they all came to us through a different path and had different reasons for being here,” she notes. “I really admire how brave these patients were.”
Written by Ellen C., McKenna