“The diagnosis was the beginning of our story, not the end.”
HealthEast® Capistrant Center at Bethesda Hospital patient Hy Carpenter and his wife, Nan.
It was Hy Carpenter’s granddaughter who first noticed the tremor in his hand. “The tremor was very subtle,” said Hy. “But you know how perceptive young children are. And she said, ‘Papa, you have to go to the doctor.’ All I had noticed was that I had slowed down in my normal work routine—it took me twice as long to complete a job. So away we went, and after being referred to a neurologist, we found out that I have Parkinson’s disease, and we started to treat it.”
Parkinson’s disease, in addition to causing tremors, can also cause a slowing down or freezing in movement. Over time, muscle stiffness, speech changes and loss of automatic movements such as blinking, smiling and swinging arms can occur. While there is no cure yet, the Capistrant Center for Parkinson’s Disease and Movement Disorders at Bethesda Hospital provides a variety of therapies and treatments to ease these symptoms.
Hy and his wife Nan became regular fixtures at the Capistrant Center—and not just because of Hy’s treatments. Nan fondly recalled how their involvement at the center changed: “Kathryn Gilbertson, a nurse practitioner invited us to join a support group for Parkinson’s patients and their caregivers. It was their second meeting, back in 2005. And from that point on, we have only missed two of the monthly meetings.”
With Kathryn’s help, the Parkinson’s support group provides a place to learn as much as possible about the disease. “If one of the patients is concerned about their balance and falling, Kathryn finds someone to come in and talk to us. There’s so much to learn that can help you—nutrition, exercise, drugs, the helping resources that are available—and this support group puts all the information in one place.”
The group’s gatherings also provide important emotional support. “For part of the meeting,” said Nan, “we separate the caregivers and the Parkinson’s patients into smaller groups to discuss more specific topics. This is so important, because when someone is diagnosed, the whole family suffers. And caregivers need to take care of themselves, too.”
The Carpenters have been so enthusiastic about the support group that they’ve stepped up their involvement, acting as facilitators. “Without the group, we wouldn’t have the same ability to accept Parkinson’s as it is. We can go there and say, ‘This is happening, and it’s not so bad.’ We have a lot to be thankful for, it’s our chance to help other people learn to cope just like we have.”
Kathryn Gilbertson, MSN, RN, CNP
Enhancing medical care with educational support: Kathryn Gilbertson, MSN, RN, CNP
Kathryn Gilbertson has a quote hanging in her office: “We are in existence to dispense not only science, but kindness, empathy and optimism.” The words were written by Capistrant Center for Parkinson’s Disease and Movement Disorders founder Dr. Terrance Capistrant; Kathryn uses them as inspiration in her work with patients with Parkinson’s. ”I really do believe in the philosophy of our center, that the educational, support and empathy that we deliver is so beneficial.“
Kathryn joined the Capistrant Center in 2005. One of her first tasks was to create a support group for people with Parkinson’s disease, as well as for their caregivers. “Our mission is to help people live well with Parkinson’s. A major theme supporting this is education, and my background in teaching contributes to the holistic aspect of our center’s care.”
At the first meeting, one person attended—the husband of a woman with Parkinson’s. At the second meeting, Nan and Hy Carpenter joined the group. “Then we slowly grew,” recalls Kathryn. “Now, we’re the largest Parkinson’s support group in the state. I think we’re so popular because we have a two-pronged approach: For the first hour, we have an educational speaker on a topic suggested by members, for instance, dizziness and balance, GI issues, nutrition, medication or other areas of concern. And then for the second hour, care givers and patients break into two groups to discuss more specific issues and provide support for one another in a relaxed manner.”
In addition to facilitating the support group, Kathryn points out other ways that the Capistrant Center’s holistic philosophy comes to life. “Patients don’t just see a neurologist when they come here. There are so many other people on the team that help them live with Parkinson’s: our physical, speech and occupational therapists, our clinical psychologists, our social worker, everyone working together to let patients know they’re not on this journey alone.”
