Joy and Community: Uplifting Those with Parkinson’s Disease
The word “Parkinson’s” invokes a certain image. If you are the Parkinson Association of Santa Barbara (PASB), the image is six amused guys on a sun-splashed fairway – each of them wearing the sort of mischievous grin that immediately precedes or follows a fit of laughter. Welcome to the Parkinson Association of Santa Barbara, where Parkinson’s Disease is an occasion for camaraderie, sharing, and enlightenment.
“About the golfing program,” says Jayne Brechwald, former PASB president and current support group moderator. “We just went ahead and started that program. Such responsiveness illustrates what I think of as the strength of our local organization. We’re grassroots and flexible.” That’s one way to put it.
Pointedly unaligned with a national organization and the “slow-as-molasses” committee model of decision-making, Parkinson Association of Santa Barbara has nimbly gone their own way for nearly half a century. “We have programs that really serve our locals,” says Brechwald. “PASB gives people an opportunity to attend exercise classes, social events, educational programs, all organized locally. The ability for people with Parkinson’s to get together and socialize is everything.”
Parkinson’s Disease (PD) as an empowering rallying point? How did that idea get off the ground? Beverly Steward had been living with Parkinson’s since her mid-20s when, in 1978, she placed an ad in the Santa Barbara News-Press. Would anybody in town be interested in starting a Parkinson’s group? Forty-five people turned up, chatting delightedly with one another and comparing notes. A steering committee was formed and the org started rolling forward in earnest.
At that inaugural meeting, PASB drew up its raison d’être. The group would exist to serve individuals with PD, their families, friends, and caregivers. How? By providing up-to-the-minute information on PD, by educating an interested general public on the nature of PD, and – you know – providing a little up-time with others on the PD journey. It was further decided there would be no membership dues. Nobody desiring to join would be inhibited by finances. Thus PASB is wholly reliant on generous donations from participants and the public.
PASB offers an array of events and exercise sessions, including their Move to Music chair-based exercise program. “The more the doctors and researchers learn about Parkinson’s,” says PASB board president, Barbara Levi, “the more they focus on exercise as the one thing that’s really proven to delay the progression of symptoms.” Also on offer are the Chat Group, the Care Partners’ Support Group, Early Stage Parkinson’s Support Group, and the Transitions Group. There are monthly speaker meetings packed with information, an annual July picnic, and a holiday party.
Richard Graham – PASB treasurer and longtime board member – explains PASB’s yearly all-day symposium. “Parkinson’s is such a complicated disease. It’s 36 different symptoms, and so you just can’t get enough information about what we’re dealing with.” Since the 2024 symposium lectures were posted to the internet, they have garnered 34,000 views from around the world.
PASB has spent nearly five decades growing into the life-elevating nexus of friendship and empowerment it is today. “Every week I hear somebody say that this is their only real outing,” Jayne Brechwald says. “And you can imagine how much I look forward to just being here and enjoying everybody discussing and sharing their issues, whether they’re emotional or physical.”
Parkinson Association of Santa Barbara
Donate now!www.mypasb.org
Administrator: Cindy Faith Swain
(805) 683-1326
Mission
To offer education, motivation, friendship, and support to people with Parkinson’s and their caregivers, family members, and friends. We strive to help people maintain a positive quality of life.
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We know you care about where your money goes and how it is used. Connect with this organization’s leadership in order to begin to build this important relationship. Your email will be sent directly to this organization’s director of development and/or Executive Director.
As a member of the Board of Directors since 2017, I have been honored to support this local, stand-alone organization. We serve hundreds of people each year through our Exercise programs, Support Groups, monthly Education programs and our Annual Symposium, most of which is provided FREE OF CHARGE. At every event, there’s a welcoming, supportive atmosphere. The striking feature of PASB is that it is a local organization with no corporate structure! This attracted me to join the Board, knowing that every dollar raised stays right in Santa Barbara to sustain and increase our local programs and services.
Supporting Those with Parkinson’s Across the Community
As Parkinson Association of Santa Barbara’s Richard Graham says: “There are over 3,000 people in Santa Barbara that have Parkinson’s, but we only have 600 members.”
After nearly 50 years of membership building through tireless volunteers and word of mouth, Parkinson Association Santa Barbara is at an inflection point. Principally in need of a part-time Director of Outreach, PASB would benefit greatly from funding sufficient for a two-year appointment of that position, a figure of $60,000. Once true outreach begins “…we would hope,” says PASB’s board president, Barbara Levi, “that those marketing efforts and awareness campaigns would yield more than enough funds needed to pay that salary.”