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Be Still My Body
Story by SARAH L. STEWART (BSJ '05)
Photo by BRIAN KRATZER
Kim Pacetti taught herself tricks to hide the shaking. She'd sit on her hands, cross her legs and clamp them together, exhausting herself trying to assert some authority over her movements. But a dozen years into her battle with Parkinson's disease — a battle that began when Pacetti was 36 — the Parkinson's was winning. She lived in constant, uncontrollable motion; she couldn't even sit in a chair without slipping out.
Then one Sunday afternoon, the Naples resident sent an e-mail to UF's Movement Disorders Center explaining her situation. Within hours, co-director Dr. Kelly Foote responded, telling her to make an appointment. Foote said she might be a candidate for a surgery called deep brain stimulation, or DBS.
Three years later, Pacetti is the master of her motions. Two DBS operations and a host of medications have stilled her movements to the point that the average passerby wouldn't be able to tell she has Parkinson's.
Innovative Care
Though stories like Pacetti's are remarkable, they aren't uncommon at the Movement Disorders Center, established in 2002 as part of the Evelyn F. and William L. McKnight Brain Institute at the University of Florida. Employing more than two dozen doctors, nurses and staff, the center has gained a national and international reputation for advancing treatment of movement disorders, says Dr. Michael Good, dean of the UF College of Medicine.
"They are already well on the journey of building a world-class movement disorders program," Good says.
Though the center offers a range of treatments, one of the most noteworthy is DBS, in which doctors implant electrodes into the patient's brain to disrupt errant brain activity that occurs in movement disorders such as Parkinson's, dystonia and tremors. UF's studies are among the first in the United States to explore further applications of DBS — for obsessive-compulsive disorder, multiple sclerosis and post-traumatic tremors.
"They really are top-notch in terms of learning as they move forward," says Ruth Hagestuen, external consultant for programs for the National Parkinson Foundation, which named UF one of 44 Centers of Excellence nationwide.
The center uses an interdisciplinary approach to care for patients. Specialists — including speech and occupational therapists, psychologists, psychiatrists and social workers — treat the full range of problems that can stem from movement disorders.
"It makes a huge difference in the quality of life if you treat the whole person," says Dr. Michael Okun (MD '96), co-director of the center.
'Silly Little Things'
Angie Wilde's home-cooked lamb and seafood dishes are a testament to the life-changing effect the center has on some patients' lives.
Over six years, Wilde's multiple sclerosis tremor had claimed many of the abilities the South Carolina resident held dear — including whipping up gourmet meals. In hopes of halting the shaking on her right side, Wilde received DBS in 2007.
The tremor has since disappeared. Wilde measures victory in all the "silly little things" she's now able to do: walk, chop vegetables for dinner, baby-sit her sister's child — things that were only silly and little until she could no longer do them.
Gainesville resident Tyler Staab knows plenty about limitations. Now 12, Tyler has lived in and out of a wheelchair since being diagnosed with genetic dystonia, a disorder that contracts muscles into awkward, painful positions. After three DBS operations over three years, Tyler is still far from cured — but he can brush his teeth and write.
"I can also run short distances, drive the golf cart and just have more fun with my friends now that I do not have as much pain," Tyler writes in an e-mail, since his speech is still difficult to understand. "I try to keep a positive attitude and remember that God does not give a person more than they can handle. I must be very strong."
Moving Forward
The center's next goal is to raise enough money to gather all its experts and equipment under one roof, instead of spread across campus.
"Our dream is to be the place where people can get the world-class experience in one location," Okun says.
The center's source of inspiration for constant improvement is clear: patients such as Tyler and his younger sister, 8-year-old Samantha, who was diagnosed with dystonia last year and is now mostly wheelchair-bound.
"I have to fight back not only for myself, but for my sister," Tyler writes. "I don't want her to give up, so I work harder to show her that we can do anything if we keep trying."
To help neurological research at UF's Movement Disorders Center contact Stephen Figueroa at 352-273-5882 or sfig@ufl.edu.
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