This holiday, I’m thankful for the people at Kaiser Permanente who have come into my life since I was diagnosed with Lewy Body Dementia (LBD), a fatal brain disorder for which there is currently no cure. Here’s why.
After several years of doctor visits and tests, searching for answers to the cognitive challenges I was experiencing and being told “you’re fine, it’s just anxiety,” I was referred to Dr. Rochelle Woods in the Memory Care Center at Kaiser Permanente-San Jose. She took the time to learn my history, ordered a PET scan of my brain, and confirmed that I had LBD. It was devastating news, but I was also relieved to finally know what was wrong with me.
I grieved, then prayed, and began to learn all I could about LBD. It made me realize that I wanted to make something positive come from my diagnosis.
Now when people ask, “How are you?” I speak from the heart. “All around us, people with dementia are suffering in silence,” I say. “They’re afraid to seek help and that’s not good. We’ve got to do something!”
My husband Chuck and I got together with Robin Shepherd, a journalist and filmmaker. We created a mission to increase awareness, caregiver resources, and research funding to find a cure for LBD—and called it The Sue’s Story Project. Robin wrote about my journey with LBD then produced a documentary about it with her filmmaker colleagues from 152 West Productions. Robin helped us build an outreach program to fulfill our mission.
We had the honor to meet with Irene Chavez, SVP of Kaiser Permanente, along with KP staff and Member Patient Advisory Councils in San Jose and Santa Clara.
Since then, Kaiser Permanente has begun including our documentary in Continuing Medical Education (CME) presentations to physicians from Santa Clara to Santa Cruz!
Dr. Elena Call, a Movement Disorders Specialist at Kaiser Permanente-Santa Clara, not only met with me and confirmed my LBD diagnosis; but like Dr. Woods, she has spoken at our presentations and in our film.
Thanks to this budding relationship, we’re meeting people from all over Santa Clara County ready to advocate with us for more research, physician training, and caregiver resources for families living with LBD. We would love to share our message with Kaiser Permanente’s nationwide healthcare system, in California and beyond.
Support our Work
We hope to extend our reach to other healthcare systems too. We are seeking grants and donations to continue our work in 2019 and to increase our impact in making life better for families living with dementia. The Sue’s Story Project is organized under the Lewy Body Dementia Awareness & Research Fund, Morgan Hill Community Foundation (a 501c3 nonprofit). Donations are tax deductible.
Sue and Chuck Berghoff and Robin Shepherd
The Sue’s Story Project Team