Parkinson Support Center of Kentuckiana Cares For Those Living With Parkinson Disease
Writer / Angela Partee
The Parkinson Support Center of Kentuckiana offers help and hope for persons living with Parkinson Disease. The Center’s Resource Guide describes Parkinson Disease (PD) as a neurological disorder in which there is a gradual loss of brain cells that make and store dopamine. The support center is an independent organization serving more than 8,000 people diagnosed with PD in Louisville and 14,000 in the Commonwealth of Kentucky.
The Center evolved from the original Parkinson Disease Support Group founded by Jewish Hospital in the early 1990s. The support group held a fundraiser — the Parkinson Derby Eve Gala — which funded research. The gala became an annual fundraising event. The Parkinson Support Center of Kentuckiana was established as a nonprofit 501(c)(3) in 1999 by the late Judy Spencer and other support group members. During the first few years of fundraising, the organization donated money to the University of Louisville for research. Then the organization segued from a focus on research to a focus on resources.
“Somewhere along the way the mission shifted,” says Erika Branch, Executive Director of the Center. “The mission was no longer to fund research but to provide services for people here in the community. Our slogan is living well with Parkinson Disease, and part of living well is what you do right now. Research is wonderful and it is definitely needed. But there were few resources that addressed how people lived right now with Parkinson. That is why our three key areas are education, exercise and support groups because those are all things you need as you are progressing through and adapting to a life with Parkinson.”
The Center offers a variety of educational programs held on-site and in the community. Currently, activities are held three nights a week at the Center, including yoga, Fight Back with Fitness class and support groups. A free symposium – Living Well with Parkinson – is held each year. A complete list of events is listed on their website, parkinsoncenter.org.
Branch says this is an exciting time for Parkinson Disease because there are so many treatment options. She noted that when she began working with the Center five years ago there were only one or two treatment options for PD. She said it is a matter of identifying the need. For instance, she sees a need for services for persons diagnosed with young onset PD (affecting persons from mid-30 to 50 years of age).
“A lot of these people are still working and they have a different set of obstacles,” Branch says. “You know, at what point in time are you going to be comfortable telling your employer you have Parkinson? Just the dynamics around Parkinson and who we are serving and how we serve has completed shifted.”
The independent status of the Center allows them freedom and flexibility in meeting needs.
“The good thing about being a grassroots organization is that there is no format for how we do things,” Branch adds. “Our grassroots approach lets us do whatever is needed. If I am talking to a group of people and I am sensing something is a need, we can address that need immediately. A lot of what we do is figure out what the need is and the best way to address it. We try things, if it works, wonderful, if it doesn’t we can adjust.”
The Center is primarily funded by the Denim and Diamond Gala and fundraising throughout the year. Those funds allow them to offer resources free to the Parkinson community.
“Everything we do is free of charge to the community,” she says. “We have to work really hard to create partnerships. We serve a huge population in Kentucky and Indiana and hopefully, we can find creative ways to make partnerships. We don’t want to, and I don’t ever foresee us, getting into a model where we are charging for service. One of the goals for the board, and one of my personal goals, is to offer all of our services at no cost.”
The Center has a small staff so one of their greatest needs is for volunteers. They also welcome new board and committee members and program input from people with PD or caregivers of people with PD. Members of the current board — 90 percent of whom are persons who have Parkinson or have some connection to someone who has PD – are passionate about the Center. Branch says they have great participation from the board members. She says good relationships are vital.
“In order to continue to grow and sustain you have to have good relationships,” Branch says. “If people know that what we are doing is genuine then they will support in return. That support can be in-kind hours, donations, it can be connections with businesses, but it all starts with someone knowing that you are truly here for the community.”
Recently, a woman with PD and her sister experienced the genuine support of the Center. The woman came in to pick up information and stayed for almost two hours talking with Branch. Taking the time to listen to people is important to Branch.
“You look at people and you realize they have no idea what is next,” she says. “Not ‘what’s next, what is going to happen to me as far as Parkinson,’ but ‘what should I be doing?’ You go to your doctor. You get your diagnosis. You have all of this information you can pull from the website. You can go online. You can Google Parkinson all day long but who is there to sit down with you and talk with you and say okay, this is your situation. This is what we suggest that you do. For that particular lady, it was just listening to what she was saying.”
Branch suggested an upcoming writing workshop to the woman whose handwriting had begun to be impacted by Parkinson. She said the writing workshop is for people who are not as comfortable writing anymore or not as comfortable telling their stories because they don’t know if they will forget something and they don’t want to be embarrassed.
“I can’t express those feelings on the website in the description of the class. It takes sitting down and talking to people,” Branch says. “Then they can see I have a feel for them, they have a feel for me, and we can put the best plan of action together. We are one of the few entities that is taking that time and that level of service, being a true support, resource center. There are a lot of exercise classes around and there are opportunities to go learn about Parkinson but how many of those opportunities involve someone sitting down and really listening to what you have going on.”
Branch recently listened to a woman express concern about her brother’s challenges with young onset PD. She then invited the woman and her brother to lunch to meet a man who also had young-onset PD. She points out that it’s those kinds of personal interactions that can’t be put on a website. She says that you just have to be a part of those situations.
The Center’s local accessibility makes it easier to be a part of the lives of those seeking to live well with Parkinson.
“There’s a big local movement going on where people reference local bourbon, local foods and local businesses,” Branch says. “We are within that local movement. There are a lot of great opportunities for our community, but we are that grassroots organization that is independent. We are the local, homegrown Parkinson Center that has been around for almost 19 years now. We’re here to serve the community and that is our focus. We want people to feel like we’re the home for them. My call to action is if you have someone who has been impacted by Parkinson, if you have been impacted by Parkinson, you need to consider becoming engaged with us.”
For more information about the center, call 502-254-3388 or visit them online at parkinsoncenter.org.