Events for Stanford-led Parkinson's Caregiver-only Support Group Members

Stanford Parkinson's Community Outreach coordinates five local Parkinson's Disease (PD) caregiver-only support groups on the San Francisco Peninsula. If you are interested in being added to the reminder email list for one of these meetings, please contact Robin Riddle, phone 650-724-6090.

We also occasionally host virtual events for these PD caregiver-only support group meetings.  Here's info on recent events:


March 2022 - "Caregiving Choices, Challenges, and Life Lessons," discussion with journalist (with PD) Dave Iverson (co-hosted with Brain Support Network)

Stanford and Brain Support Network co-hosted a webinar on Wednesday, March 30, 2-3:30pm. with journalist Dave Iverson.  Dave read some excerpts from his just-released memoir, "Winter Stars: An elderly mother, an aging son, and life’s final journey." Dave was diagnosed with Parkinson's in 2004 and was in the middle of making his first PD-related documentary when "he decided to do something he’d never imagined: he moved in with his 95-year-old mom Adelaide." His book is about his ten-year caregiving journey.)

Dave, with host Robin Riddle, discussed the choices, challenges, and life lessons of caregiving.  Dave says, "Being a caregiver means you experience anger and joy, loss and love, usually when exhausted and often on the same day."  But as he also writes, it’s a choice he’d make again.

Dave addressed his Parkinson's and how that affected his caregiving experience, sometimes in surprising ways. 

All royalties from the sale of Dave's book will be donated to Parkinson's or elder care organizations.

View Meeting Recording

February 2022 - Discussion about caregiving with local journalist (with PD) Dave Iverson (co-hosted with Brain Support Network)

Stanford and Brain Support Network co-hosted a virtual meeting on Wednesday, February 23, 2-3:30pm. with local journalist Dave Iverson. Dave is the producer of two Parkinson's-related documentaries, "My Father, My Brother and Me" (2009), and "Capturing Grace" (2015). He was also the host for many years of Michael J. Fox Foundation educational webinars on PD. (Many of you may remember Dave from his work with KQED and PBS.)

Dave talked about his memoir, set to be released in March 2022, "Winter Stars: An elderly mother, an aging son, and life’s final journey." Dave was diagnosed with PD in 2004 and was in the middle of making his first PD-related documentary when "he decided to do something he’d never imagined: he moved in with his 95-year-old mom Adelaide." His book is about his ten-year caregiving journey.

Dave's talk focused on the challenges of caregiving, which is a story he believes isn't told often enough. "Being a caregiver means you experience anger and joy, loss and love, usually when exhausted and often on the same day. But as he also writes, it’s a choice he’d make again."

Dave talked about his Parkinson's and how that affected his caregiving experience, sometimes in surprising ways. But his story is primarily about the choices, challenges and life lessons caregivers encounter.

Here's advance praise for Dave's memoir from Michael J. Fox: “Winter Stars is a gift — a modern classic of frontier literature documenting the uncertain journey into the country of caregiving. That Dave walked this path while himself living with neurological illness is remarkable, but his story will resonate with everyone who has grappled up close with a parent or loved one’s end of life.”

All royalties from the sale of Dave's book will be donated to Parkinson's or caregiving organizations. A special offer is available to attendees of the February 23rd webinar, or those in the Stanford caregiver support group, or those in the Brain Support Network support group. Please contact the leader of your local support group about that. (If you don't know who that is, then you probably don't qualify for this special offer.)

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November 2021 - "Resource/Tip Meeting" (co-hosted with Brain Support Network)

Stanford and Brain Support Network co-hosted a virtual meeting on Sunday, November 14, 2-3:30pm. Attendees were invited to share "resources" and "tips" they find useful in caregiving for family members with Parkinson's Disease, Lewy body dementia, progressive supranuclear palsy, multiple system atrophy, and corticobasal degeneration. This was open to local Stanford and Brain Support Network support group members only. 

Examples of resources and tips that were shared:

  • Local resources: Family Caregiver Alliance. A particular home care agency, a particular assisted living facility, or a particular board and care home. A good palliative care program. A hospice agency that offers a pre-hospice program.
  • Online resources: List of exercise videos. List of exercise classes. “How to” videos.
  • Tip: Sign up early for hospice. Utilize the Medicare home health benefit.

Stanford and Brain Support Network co-hosted in June 2021 a "gadget" meeting. (See our notes below about that terrific meeting.) We filled up all 90 minutes sharing helpful gadgets, equipment, and tools, so this November meeting was a follow-on meeting to all the other things we didn't have a chance to share.

View Meeting Recording

September 2021 - A Neuro-Palliative Approach (Katz, Stanford)

September 2021 - "The Parkinson's Caregiver's Journey: Finding Balance" Webinar

Stanford hosted a caregiver-focused webinar on Wednesday, September 22, 2021, 2:30-4pm, with Santa Clara University clinical psychologist Dale Larson, PhD (dalelarsonphd.com). Our lives change dramatically when illness or disability strikes those we love most and we are suddenly cast in the role of caregiver. As Dr. Larson says: "Our worlds can be turned upside down, our most cherished beliefs and expectations challenged and transformed". Drawing upon some of the latest research, this webinar explored the challenges and rewards of the Parkinson's caregiver's journey, and look at how you can care for yourself while caring for those you love.

Dr. Larson drew upon his wonderful book titled "The Helper's Journey," which focuses on caregiving, especially for professional caregivers. He posits that there's a need to re-charge and to become resilient. To prepare for his presentation, Dr. Larson looked through research on PD caregiving, and shared his findings. Additionally, he has some personal experience with Parkinson's.

Some of the questions Dr. Larson answered included:

  • what can I do to not feel like a failure as a caregiver?
  • is it my responsibility to ensure my husband keeps going? To ensure he thinks highly of himself?
  • Incontinence
  • what can I do not to feel guilty about placing my wife in a care facility?
  • my mother has a great life in that she does what she wants but why do I feel trapped in an exhausting life as a caregiver?

 

Notes are coming soon!


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June 2021 - Palliative Care and End-of-life (Lai and Stephens, PAMF)

June 2021 - "Gadget" Meeting (co-hosted with Brain Support Network)

Stanford and Brain Support Network co-hosted a virtual meeting on Sunday, June 27, 2-3:30pm. Attendees were invited to share "gadgets" (equipment, tools) they find useful in caregiving for family members with Parkinson's Disease, Lewy body dementia, progressive supranuclear palsy, multiple system atrophy, and corticobasal degeneration. Gadgets fell into various categories, including:

  • Mobility
  • Safety
  • Incontinence
  • Meal-time
  • Medication management

 

> Google Spreadsheet we compiled in advance of the meeting

> Meeting Notes


View Meeting Recording

May - Care Management (Melvin, Sage ElderCare)

March - Options for Parkinson's Care: Home Care and Home Health (Kefer, Home Instead and Mina, Amedisys)