Community Stories

How the Parkinson’s Association of San Diego has impacted the lives of people with Parkinson’s.

The Parkinson’s Association has been my family’s go to resource for educational & social needs & wants. We have participated in their Step by Step Walk’s for the past 10 years or more, attended Empowerment Day and fund raising gala’s. We have been able to share with like minds & hearts without the fear of being pointed out because of Parkinson’s.

The friends we have made have become our family. I feel fulfilled that I can share the knowledge I’ve gained with others through the Mentor program & as a speaker for caregivers at Good Start events. Chris has made such a personal difference in our families life and many other’s with Parkinson’s, since he came on board as the executive director.

My name is David. I was diagnosed with Parkinson’s in December of 2021 at age 57. I had stopped working temporarily just prior to this, but now I am on full disability. When I was first diagnosed by seeing 3 different doctors for different reasons, it was recommended that I find some sort of regular exercise & cardiovascular activity. Initially, I was walking my friend’s dogs multiple times a week, but after a few months that became impossible.

I almost immediately joined a Parkinson’s support group, but they only met online. Since I do much better with people in person, I joined a group to go on hikes & meet up in parks. The most rewarding group I joined was the Rock Steady Boxing Downtown group in North Park, San Diego. These folks have been so good to me. The camaraderie, the exercise, the fun, has all done wonders & I try to give back as well. We have done 5K walks together, annual parties, & one-on-one get togethers. The boxing has helped with my coordination/balance, getting fit & emotional well-being.

I go to class multiple times per week. I see my neurologist every 4 months & Parkinson’s does not define me. It is a part of my life, that’s all.

I received a panicked phone call on December 2, 2023, from a mentee, friend and former work colleague, along with her husband. She is a patient at Scripps Clinic Movement Disorder Clinic and had a Medicare Advantage plan. She knew she needed to make a change, but. . .her computer was broken, she had forgotten all of her passwords, and her cognition was negatively impacted by the stress of this issue. I was in Phoenix, AZ at a DPF Leadership Conference for Hispanic Communities so I provided them with links to the information provided on the PASD website and further described her options.

She replied, “I cannot understand all of this. Can you please just tell me what to do?” I determined that she desired to continue with her current MDS and advised her that she could pay out of pocket to see him or change to regular Medicare A&B with a supplemental plan through Blue Shield, which was waiving underwriting for supplemental plans for a short time frame. I also advised her to sign up for Part D. She was able to contact the appropriate parties and made the changes. Unfortunately, a “wet” signature was needed and she did not have access to a computer. We brainstormed ideas on Monday, December 4, and developed a workable solution. She successfully navigated through the process and changed her insurance plan, in spite of her impaired cognition.

On Thursday, January 25, 2024, her husband contacted me to alert me that his wife had been notified by “The Assistance Fund” that her claim for Nuplazid had been denied because they did not have funding. I contacted the local rep immediately and searched for a solution on the Acadia website; found AcadiaConnect and provided information to the husband. He planned to follow up and realized that they would help them to attain the medication via Medicare Part D. The rep responded to me on Monday, January 29, 2024, and provided contact information for a Patient Access Manager. I provided the info to my mentee and her husband as a back up plan to the online service.

My mentee was diagnosed with PD around 8 or 10 years ago; her journey has not been smooth. She now has cognitive decline and is dealing with PD psychosis.

She and her husband benefited greatly from our contact as well as from information secured, developed and presented by Jeff Seckendorf via the PASD website. Without the mentor program, I fear that she would have had a lapse in insurance coverage and would have suffered financially, emotionally and mentally – so happy that I had the resources and tools available to assist her and her husband.

Julie’s essay on Rock Steady Boxing: