Trends in Health Care
Reason for hope
|Baton Rouge evolving as a center of Parkinson's research|
Neither Sally Palmer nor Steve Kragthorpe moved to Baton Rouge because of the treatment and research of Parkinson's disease available in the Capital Region.
But it's hard for either to imagine being anywhere else as they battle the life-changing ailment while they aim to maintain a sense of normalcy.
Palmer, co-chairperson of the Baton Rouge Area Parkinson's Disease Group, was diagnosed with Parkinson's seven years ago, three years after she and her husband moved here from Nashville. Kragthorpe, the quarterbacks coach for the LSU football team, was diagnosed with the disease a year ago and has helped raise awareness.
“It's been a blessing to have great doctors here,” Kragthorpe says. “It's encouraging to see that Baton Rouge is really intent on becoming a leader in this state in neurological care.”
With the convergence of cutting-edge treatment at many different levels available at the NeuroMedical Center and through the LSU health system and a world-class research facility at Pennington Biomedical Research Center, Baton Rouge emerges as a regional focal point for Parkinson's patients.
An example of the Capital Region's growth in that regard took place this month when Pennington hosted a Parkinson's conference. The conference was expected to attract 250-300 patients, spouses and caregivers, among others. Parkinson's is the second-most common neurodegenerative disorder in the world behind Alzheimer's. An estimated 1 million Americans battle Parkinson's and which afflicts 7-10 million worldwide.
“This event is sort of an exploratory conference to determine what kind of interest there is in increasing the awareness and the willingness to participate in the kind of research we feel like we can do here,” says Dr. Don Ingram, a Pennington researcher who specializes in nutritional neuroscience and aging. “It's important to us to inform the community about what we've learned about the disease and how we are learning how to treat it.”
Lee Mazzoli was part of the grass-roots beginning of the Baton Rouge Area Parkinson's Disease Group 28 years ago. A retired nurse, she says the groundwork for treatment got off to a strong start under the watch of longtime LSU medical school professor Dr. Jay Rao.
The group's message back then and through the years has been constant, says Mazzoli, now 88.
“People can have Parkinson's and keep on living for a long time,” she says. “When we got the group started, we wanted patients to ask questions and learn. We had a lot of great speakers come, especially Dr. Rao, who told us to not get out of the chair at the doctor's office until the doctor had answered every question.”
Today, there are many more answers to questions and a more promising future. Ingram says an estimated 64,000 people in Louisiana have been diagnosed with Parkinson's. Statistically, most of those are likely 60 or older.
Two of the NeuroMedical Center's rising stars returned to their home state to help patients with Parkinson's.
Dr. Gerald Calegan is a Woodlawn High graduate who studied at LSU and Tulane before embarking on his medical career. He returned to the area six years ago, and a year later teamed with Dr. Paul Waguespack to introduce and make widely available deep brain stimulation surgery in the Capital Region.
Parkinson's patients in the Baton Rouge area have had access to DBS since the procedure first emerged as a treatment for a variety of brain disorders 25 years ago. With Waguespack and Calegan—and more recently Dr. Glenn Kidder—the surgery has become a staple in the NeuroMedical Center's menu of treatments.
Calegan says DBS involves a wire that is inserted (while patients are awake) deeply into a specific part of the brain. Four contacts are connected to the part of the brain affected and hooked up through a pacemaker-like device.
What Calegan and now Kidder have mastered is how to set and adjust the settings once the device is installed, which affects the level of impulses sent to the brain.
“It's basically a substitute for medicine,” Calegan says. “It provides a constant level of stimulation and helps smooth out the complications. What it does is helps patients get away from having to take medicine every 2 to 4 hours. We feel like it makes a big difference in our patients' lives, functionally speaking.”
For DBS to continue to be an effective tool requires research, development, and a facility where doctors are encouraged to perform it.
All of that is available in Baton Rouge, Calegan says, and the Pennington center is a nice companion because related studies are under way there focused on treating aspects of Parkinson's, such as lifestyle modification (diet, exercise) and nonmotor symptoms (depression).
Because Parkinson's has become increasingly prevalent—the number of patients diagnosed continues to rise in relation to increased life spans—Calegan says it's vital to have so many options for patients in the Baton Rouge area.
“We don't get as much time to spend with patients as we want to and need to, so it's nice to have different venues and environments where patients can go over all aspects of the disease,” Calegan says. “Knowledge is power, and with what we have in this area, patients and their families have a great opportunity to learn how to manage Parkinson's and live with it.”
Adds Kidder, “We're very fortunate in Baton Rouge to have the facilities we do. On the medical side alone, we have the largest concentration of movement disorder doctors in the state. We're truly well-suited to handle the needs of Parkinson's patients very well.”
As effective as treatments have become, there is still not a cure. That makes the management of the disease a key component of care, and that's another area where Baton Rouge has taken a prominent role.
With Kidder and Calegan working side-by-side on the placement and programming of the intricate stimulators inserted during DBS, they have carved a niche in the Capital Region for how to help patients handle the effects of Parkinson's—which include tremors, rigidity, bradykinesia (slowness of voluntary movement), postural instability and a Parkinsonian gait.
While the motor-skill signs and symptoms are the most prominent, there are also other effects such as anxiety, insecurity, stress, confusion, memory loss, depression.
“Everybody would love to cure the disease, but Parkinson's is a long-term disease that runs its course for 20-plus years, so it's critical to help patients learn about the different resources they have to help them live their lives and not just rely on meds,” Kidder says.
“DBS is a great option and it works well for a lot of patients, but it doesn't provide all the answers. It's important for patients to understand that to lead as normal a life as possible, lifestyle modification and support groups are very important.”
The experiences of Palmer and Kragthorpe give credence to this claim.
It was through support groups that Palmer, now 58, learned about different treatments and doctors who could help her as she navigated her way through the first few years of Parkinson's. Now she also has a full understanding as well of how important the research done at Pennington is to her future and other Parkinson's patients.
“It's wonderful to have that kind of facility here and for them to be willing to study Parkinson's,” she says. “That's just another part of what makes Baton Rouge such a great place for somebody like me and my husband. I can't say enough about the kind of treatment and support we've gotten since we moved here and I was diagnosed.”
Long before Kragthorpe was diagnosed, he and his wife, Cynthia, had learned how to handle the unexpected hurdles life presents. Cynthia has had multiple sclerosis for several years and experienced a serious heart problem right before her husband got to LSU.
So, yes the Kragthorpes know all about needing support.
“It's sobering when you find out something like this is wrong with you, but you find encouragement when you realize there are so many avenues you can take in a place like Baton Rouge,” Kragthorpe says.
“It's a challenge to have Parkinson's. But it's a challenge you know you're not fighting by yourself because of the way this community has embraced the idea of becoming known as a place that treats it as well as any place in the country.
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