Since becoming medical director of the University of Minnesota Ataxia Center last spring, Khalaf Bushara, M.D., has been motivated by two things: his vision for the future and the positive feedback from patients and their referring doctors.
“It’s encouraging to know that we are headed in the right direction—that our efforts are making a difference in our patients’ lives,” says Bushara.
For more than fifteen years, the Ataxia Center has been providing specialized care for patients with ataxia and diseases of the cerebellum. Under Bushara’s direction, the center aims to expand its services, while educating physicians and patients about ataxia and conducting research related to the disease.
On all fronts, Bushara and his team are making notable progress.
A growing team
The Ataxia Center is a “one-stop shop” for diagnosis, treatment, and management of ataxia. After a neurologist or other health-care provider refers a patient to the center, Bushara evaluates him or her to rule out any other underlying treatable conditions. Then, with nurse coordinator Char Martins, R.N., B.S.N., Bushara talks with the person about family history. In many cases, Matt Bower, M.Sc., the clinic’s genetic counselor, is asked to help map out family history with the person, and he or she may opt to undergo genetic testing. If it appears that family history isn’t a factor in the person’s ataxia, the team keeps searching for answers.
“To me, it’s really important to learn as much as you can about each individual,” Bushara says. “In several cases, that additional investigation has led to the discovery of a potentially treatable cause of ataxia or the discovery of a new family with ataxia in which the gene was unknown. Indeed, the University of Minnesota has an impressive history of describing new genes involved with ataxia.”
Once Bushara and his team determine the type of ataxia a person has, they develop treatment strategies and start physical therapy.
This year, thanks to the financial support of the Bob Allison Ataxia Research Center (BAARC), physical therapist Alecia Nickell, P.T., M.Sc., joined the center’s team. Like the rest of the staff, Nickell works at the clinic one day per week—allowing patients to have their physical therapy evaluations on the same day as their initial assessment and clinical evaluation.
(Re)searching for answers
Bushara’s quest to provide comprehensive services to Ataxia Center patients has led to a multidisciplinary direction in care. In addition to a genetic counselor and physical therapist, an ataxia care team also may include psychologists, psychiatrists, cardiologists, ophthalmologists, urologists, and orthopaedic surgeons.
These collaborations have expanded into the research arena, as well. For example, Bushara is currently working with radiology neuroimaging scientists to explore how magnetic resonance imaging techniques can help physicians diagnose ataxia earlier or better monitor its progression.
In addition, the Ataxia Center is working with the University of Minnesota Medical School’s physical therapy program to explore how novel exercises designed to increase eye-foot coordination can help with the coordination difficulties that people with ataxia encounter.
Both Martins and Bushara are pleased with the Ataxia Center’s role in raising awareness of ataxia. They’ve recently compiled a comprehensive booklet on ataxia and launched a website to introduce the center to the community.
“It feels good to know that when our patients have many, many more questions than I can answer in one sitting or phone call, I have tools I can recommend to them that will help them learn more about their condition,” says Martins.
To Bushara, improving awareness of the disease must also involve recruiting a new generation of physicians to care for patients and search for treatments. For that reason, he is working to increase the number of neurology residents who rotate through the Ataxia Center.
“Ultimately, by increasing awareness in our future neurologists, we will bring greater awareness to patients and other members of the medical community,” Bushara says.