Since its inception in 1984, the Capital Area Parkinson’s Society has evolved to serve all of Central Texas, offering ways for those with the disease, along with their caregivers and families, a place to connect.
CAPS was originally founded by caretakers of people living with Parkinson’s to help raise awareness and support for a disease that, at the time, largely flew under the radar.
“Their initial focus was to help people who didn’t have a way to get information or support or just learn about the disease,” CAPS president Victor Becker said. “It was quite intimidating at the time. Michael J. Fox has done a lot to publicize it, but it was pretty much under the carpet.”
Today, the organization serves 500 members through its support groups and services. Support groups are now offered virtually and in-person and can range from geography-based to topic-based, depending on member needs, board member Paula Knight said.
“When it comes to our support groups we can segment out based on gender and stages [of the disease,]” she said. “We’re really flexible and accommodating for whatever type of support group makes the most sense for folks.”
CAPS’ membership is available at no obligation to those with Parkinson’s and their caregivers and provides a variety of social services ranging from help with getting groceries to accessing transportation services to respite care.
“Those are the kind of things we’re proud of that we can offer people in real time service,” Becker said.
CAPS also works to educate the Austin community about Parkinson’s, which affects each individual in a unique way, ranging from tremors and dyskinesia to issues with speech and diction.
“Many people think you die from Parkinsons, but you can’t. Parkinson’s is not a fatal condition,” said Becker, who was diagnosed 15 years ago. “With Parkinson’s, you can still do everything, it just takes longer. You have to develop patience and flexible schedules.”
There can be a misconception as well that Parkinson’s is something only affecting older individuals, which is not the case.
“About 15% of folks who are diagnosed with Parkinson's are diagnosed with what’s called early onset Parkinson’s,” Knight said. “Under age 50 is considered early onset, so it’s not something that affects just our senior community, it’s something that affects your average professional.”
There is also a financial burden that happens for families as a whole. Because Parkinson’s is classified as a disability, most individuals end up living at or below the poverty line.
“There are so many costs like medication or job loss or sometimes it’s not just the person diagnosed with Parkinson’s that acquires the job loss, it’s the family as a whole, because they have to be there to take care of their partner and caregiver cost is high,” Knight said.
Those wanting to learn more or support CAPS have several options. Membership with CAPS is free and open to everyone in the community, and the organization also accepts donations, which are tax deductible, and can be made online or by check.
CAPS is also led by an 11-member board of directors, all of whom are volunteers and have been affected by the disease in some way.
“It’s the most passionate group of people I’ve ever been involved with in a nonprofit,” Becker said. “These people actually believe they can make a difference and they don’t just go through the motions.”
The ultimate goal of the board and organization is to be approachable to the community to help educate and serve those in need. The more awareness the organization gets means more opportunities to find new community partners and ultimately new medications and hopefully a cure for the disease.
“We are super open to feedback and how we can better serve folks, depending on if we need to add to our repertoire of services or if there’re topics we can cover better,” Knight said. “The more education we can spread, and the more people we can help. That’s really our big goal: making sure people affected by Parkinson’s have the resources they need to thrive.”
To learn more about CAPS, visit www.capitalareaparkinsons.org.
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