“My sister Janet Reno has Parkinson’s. My younger brother has Parkinson’s. I have essential tremor. Sometimes we would all shake in unison.”
So said Maggy Hurchalla, a former Martin County, Fla., commissioner who talked about her family’s experience with Parkinson’s disease at the opening Monday of the University of Florida’s new Center for Movement Disorders and Neurorestoration.
With her sister, former U.S. Attorney General Reno, at her side — along with UF College of Medicine Dean Dr. Michael Good and center co-directors Dr. Kelly Foote and Dr. Michael Okun — Hurchalla recalled when “Janny” publicly announced in 1995 that she had Parkinson’s disease.
That same day, Hurchalla spoke at a large dinner attended by many seniors. Some confided that they admired her sister’s courage. They also had Parkinson’s, but were afraid to even tell their children.
Reno worked for five more years as attorney general. She served longer than any other attorney general in the 20th century.
“Her hand shook like mad, but she pointed out that her brain wasn’t shaking,” Hurchalla said.
Hurchalla and Reno on Monday toured UF’s new center, a destination where people with Parkinson’s disease, dystonia, tremor, movement problems and ataxia have access to the latest research-based care and the opportunity to shape the therapies of tomorrow.
“The concept may sound simple, but it doesn’t exist anywhere else,” Okun said. “The idea is the patient comes to one place and 10 or more disciplines revolve around the patient, offering the best care and access to cutting-edge research. When the patients tell us their issues and problems, we look at that, and it often provides us with new research directions.”
When the center took shape in 2002, it emphasized medical and neurosurgical solutions to movement problems. Its scope expanded to include emotional and social issues for patients and their families, such as depression, anxiety and sexual dysfunction, so that even if a disease progresses, patients can still enjoy their lives.
“We want to dispel the myth that there is little that can be done for people with chronic diseases like Parkinson’s or tremor,” Foote said. “There is so much we can do with medications, behavioral treatments and surgical approaches — if we pay attention to our patients.”
With a minimum of administrative space — the co-directors share an office — the center on the fourth floor of the UF Orthopaedics and Sports Medicine Institute provides access to 12 UF faculty physicians, Shands rehabilitation specialists, physical, occupational and speech therapists and on-site CT and MRI scanning. Dr. Ramon Rodriguez directs the Movement Disorders Clinic and the Tyler’s Hope Center for Dystonia Care, and Dr. Irene Malaty is the medical director of UF’s National Parkinson Foundation Center of Excellence and director of the Tourette Syndrome Clinic.
“I’m especially happy to be here today to celebrate a facility where everything and everyone you need is in one place,” Hurchalla said. “Until you’ve been there, it’s hard to realize how many different medical specialties and auxiliary care strategies are involved in Parkinson’s. Your primary care physician at home may not know that you need a Parkinson’s-trained urologist. Things happen differently because of the disease itself and because of the medications.”
Creating an environment where investigators deliver quality care while succeeding in clinical and research initiatives is a way to solve the nation’s health-care challenges, according to Good. But it is difficult to execute.
“Being successful requires top-tier doctors and interdisciplinary teams to offer care, patients who inform research, scientists who earn federal grants to translate research into medical applications, and people with expertise in designing clinical trials that earn FDA approvals,” Good said. “This center combines those elements. As a result it has become a destination for people from around the world who are seeking treatment.”
Nearly 13,000 patients have visited the center in the past 12 months, and 37 research studies are currently seeing patients in efforts to develop new therapies. The directors say the new facility will further improve the patient experience. Hurchalla agrees.
“Most of the patients here don’t need a hospital bed. They simply need a close place to stay when they come in for several days of testing and evaluation,” Hurchalla said. “The idea of an independent, freestanding facility where the patient can stay in a hotel across the street is an inspiration.”