THE HISTORY OF SDCCPSG & ITS FOUNDER DONNE WILLETT
San Diego Central County Parkinson’s Support Groups (SDCCPSG) would not exist, were it not for Donne Willett, founder of its original support group! On February 23rd, 2005, my husband, John, was diagnosed with Parkinson’s disease (PD). My bestfriend since age 6, Susan Howard, SDCCPSG’s current Secretary, picked up a brochure at her church from the Parkinson’s Association of San Diego (PASD) listing resources, including a Pt. Loma Parkinson’s Support Group (PLPSG).
Established in 2004, the California Parkinson’s Disease Registry (CPDR) tracks the number of residents diagnosed with Parkinson’s (as of 12/31/21, the number was 31,2021, the highest count among states in the nation). California’s Central Valley is often referred to as “Parkinson’s Alley”, due to higher-than-average rates of PD in residents. This elevated risk is linked to long-term exposure to pesticides which are used extensively in the agricultural regions large-scale farming operations.
Larger than the states of Rhode Island and Delaware, San Diego is geographically broken up into North, Central, East and South counties. A coastal city, adjacent to the Mexican border, with the 3rd largest population in the nation (3.3 million), the CPDR reported an estimated 9,842 citizens diagnosed with Parkinson’s as of May, 2021. Numbers have increased since then. Located in Central San Diego County, Pt. Loma is a 7-mile-long peninsula separating the Pacific Ocean from San Diego Bay and is where John and I started life together.
A former special education teacher “Flying Solo” (i.e. living on her own) in Pt. Loma, and diagnosed with Parkinson’s in 2002, Donne did not let that stop her! For insight into her perspective at the time, read “Donne’s Words”, as dictated to her sister, Delle. With initial assistance from Lester Cohen PhD, a person with Parkinson’s (PwP), Donne started the Pt. Loma Parkinson’s Support Group (PLPSG), offering monthly Wednesday evening meetings held in the San Diego Room of San Diego County’s Health & Human Services Department, meeting every month, 12 months a year! She typically had a speaker, followed by refreshments, and then breakout. Donne was organized, had great presenters, and made it all look effortless. She even held our holiday parties there, decorations and all.
In 2007, Donne introduced the PLPSG to Rumba taught by Lisbeth Garces at Pt. Loma’s YMCA. Lisbeth’s mother and brother had Parkinson’s, her sister cerebral palsy, and her son muscular dystrophy. Living in Venezuela, Lisbeth chose to come to the United States to seek better medical care for her son, starting the nonprofit, Juan Carlos Foundation, in his name. Thanks to Donne, Lisbeth is now firmly planted in San Diego’s Parkinson’s community, as a Rock Steady Boxing coach, and current PASD liaison to San Diego’s Hispanic Parkinson’s community, facilitating both Parkinson’s education and support groups for them.
In 2009, SDCCPSG’s Vice-President, Jim Paterniti, PhD, a PwP, collaborated with Lester Cohen, PhD, and together they asked one important question: “What do we need to do to empower PwP to live their best life?” Between Jim, Lester, and Donne, they determined the best way to treat Parkinson’s is through a synergistic collaboration between both the medical and Parkinson’s communities that empowers people with Parkinson’s, utilizing 3 important pillars: exercise, curated literature providing the best medical information, & socialization through support groups. Out of this grew the PASD’s Good Start Program, which is currently offered quarterly in San Diego. Since its inception, it has helped more than a thousand people with Parkinson’s, their families and friends.
Always seeking out that which was cutting edge, Donne learned about a new Parkinson’s exercise program called Rock Steady Boxing (RSB), then being held in North County, and wanted to bring it to Central County. In 2015, she found a young man she described as “green behind the ears” teaching boxing on the lawn in Balboa Park. She immediately went to the Executive Director of PASD, then Lisa Fine, asking if PASD could pay for his required RSB training and certification in Indianapolis. “Maybe next year…” Lisa replied. “I may not have a next year!”, Donne retorted. And with that, she was on a mission to start “Non-RSB” in Central County. Endless days and hours were spent researching, visiting, and trying out interested gyms in the North Park area. You can imagine our surprise when, at PASD’s April, 2016 Annual 5-K Walk/Run, Lisa introduced Mike Reeder as Central County’s new Rock Steach Boxing coach!!! Donne, another person with Parkinson’s, and I were sitting in the front row in total shock and dismay. Seeing our expressions, Mike quickly ran over and apologized, explaining he was told to “say nothing”. The Executive Director explained she wanted to “Surprise us…” People with Parkinson’s are one group who don’t need any more surprises! Bottom line…Donne is why San Diego has Mike Reeder, voted 2024’s National Rock Steady Boxing “Coach of the Year”!
Later that month, looking to “pass the baton”, Donne held a meeting at PASD’s office which John and I attended. Having started my career facilitating support groups, I raised my hand and said I could help, and the rest, as they say, is history.
In 2017, Chris Buscher, PASD’s new Executive Director, reached out to me to see if I would be willing to implement a Davis Phinney Foundation pilot project, called “Sidekicks”. Donne jumped right in and offered to not only participate in but help me coordinate and run the program at a local residential community, Oakmont of Pacific Beach. The project paired people with Parkinson’s up with youth in a weekly, month- long, cross-generational experience, using art as the medium for interaction. 15 people with Parkinson’s joined 15 young people in a very successful, 4-week exchange.
Later that year, as Donne was preparing to move from her home to her sister, Denny’s, she invited me over to share Spanish moss and tillandsias she had lovingly grown in her garden. Like everything else she touched, the moss and tillandsias have proliferated, a wonderful remembrance and gift from Donne. In November 2017, Donne elected to undergo a then new procedure, Asleep DBS (deep brain stimulation) and, accompanied 3 by devoted sisters, Denny and Delle, traveled to San Francisco, the closest location to offer the then new procedure.
In 2018, Donne broke her hip in a fall and moved to the same residential community where we had held the Sidekicks project. I think we can all agree…change can be a challenge. In a call, Donne and I were discussing her transition, and I queried, “Well, Donne, what do you know? Silence ensued, to which I responded, “You know support groups!” and, with that, together we started the Pacific Beach Parkinson’s Support Group (PBPSG) which met live, monthly at Oakmont. Group participants were comprised of residents from the care facilities of Oakmont & Wesley Palms, as well as the surrounding Pacific Beach and La Jolla communities.
A new La Jolla residential facility, Monarch Cottage, heard about our group and asked if we could start not 1, but 3 support groups for them. In response, I, along with our Vice- President, Jim Paterniti, PASD’s new Executive Director, Chris Buscher, and Scripps Movement Disorder Specialist, Dr. Nelson Wynn offered to give an introductory Parkinson’s overview to the coastal communities on Monarch’s behalf when…COVID struck. With the arrival of the pandemic, PBPSG went virtual, which proved challenging for people with Parkinson’s residing in care facilities. The virtual PBPSG was eventually renamed Living in the Solution Parkinson’s Support Group (LITSPSG) because, as its new participants observed, “We’re not living in the problem; we’re Living in the Solution!”
September of 2022 found Donne a patient in UCSD’s Hillcrest Emergency Department. She asked for me to visit, and I learned so much in that single afternoon. There she was still teaching me, as well as medical staff nearly 20 years later! And post pandemic, Wesley Palms Parkinson’s residents who had attended Donne’s PBPSG followed her example, starting their own live support group.
When PASD briefly suspended service at the end of 2016, we and other independent support groups were deciding how to proceed. In early 2017, Paul Dawson, a Parkinson’s care partner and North County support group leader led their support groups into becoming a nonprofit, the North County Parkinson’s Support Group (NCPSG). One of our participants visited, liked what he saw, brought back his findings to our groups and we voted to follow suit. With the support of both Paul and Chris Buscher, our groups formed the nonprofit, San Diego Central County Parkinson’s Support Groups (SDCCPSG). We wanted to follow NCPSG’s example and become Central County Parkinson’s Support Group, however, the acronym, CCPSG, had already been taken by “Cleveland Christian Private School for Girls”.
As a nonprofit, SDCCPSG has had the opportunity to bring a number of support groups under its fold, including Jim Paterniti’s “Minds in Motion”, Ron Phillips “VA Parkinson’s Support Group” and, during the pandemic, UCSD’s “People with Parkinson’s” and “Care Partner” support groups, as well as the “East County Parkinson’s Support Group”. As of 2025, SDCCPSG offers 4 support groups: our live PLPSG, and our virtual LITSPSG, Speaker Series, and Vyalev/Duopa support groups.
In closing, we have much and many for which to be grateful, not the least of whom is Donne Willett and her myriad contributions. Here’s to you, Donne! Thank you for sharing your time, knowledge, experience, and creativity with San Diego and our Parkinson’s community. You have definitely made a difference in the lives of many!!!