Since 2004 (18 years!), we have convened support group meetings for caregivers of those with Lewy body dementia (LBD), progressive supranuclear palsy (PSP), multiple system atrophy (MSA), corticobasal degeneration (CBD), and atypical parkinsonism.
These are separate — yet simultaneous — meetings for each disorder, though the PSP and CBD groups are usually together. Among all of three simultaneous groups, attendance is 20-30 total. We welcome family/friend caregivers living in Northern or Central California. Contact us if you’d like to be added to the meeting reminder email list.
In 2022, we are mostly alternating between in-person meetings (even months) and virtual meetings (odd months), and we are mostly meeting on the second Sunday of each month, starting at 5pm. The schedule is:
January 9, 5-6:30pm, virtual
February 20, 5-6:30pm, virtual (this is the THIRD Sunday)
March 13, 5-7pm, in-person and outdoors at a restaurant in San Mateo
April 10, 5-7pm, in-person and outdoors at a restaurant in San Mateo
May 15, 5-6:30pm, virtual (this is the THIRD Sunday)
June 12, 5-7pm, in-person and outdoors at a restaurant in San Mateo
July 10, 5-6:30pm, virtual
August 14, 5-7pm, in-person and outdoors at a restaurant in San Mateo
September 11, 5-6:30pm, virtual
October 9, 5-7pm, in-person and outdoors at a restaurant in San Mateo
November 13, 5-6:30pm, virtual
December 11, 5-7pm, in-person and outdoors at a restaurant in San Mateo
In selecting these dates, we have avoided as many cultural events, sporting events, and holidays as possible.
Contact us for the virtual meeting link and for the restaurant location in San Mateo. For the in-person meetings, we usually meet outdoors on a restaurant patio. For the virtual meetings, most participate with video, but it is perfectly fine to join by phone-only.
The discussion is led by caregivers who have lost their family members to these disorders. In most cases, the family member donated his/her brain and the diagnosis has been confirmed. (Brain Support Network can assist your family in making brain donation arrangements.) Discussion leaders include:
- LBD: Dianne, Randi, and Lynn
- MSA: Candy, Barbara, Karen, Jan, and Doug
- PSP: DJ, Barbara, Cristina, and Robin
- CBD: Dick and Mark
Please put these caregiver-only support group meeting dates on your 2022 calendars now. An email requesting RSVPs will be sent out a week or so before each meeting. RSVPs are always due by noon on the Saturday (one day) before each meeting.
All family/friend caregivers are invited: primary, secondary, those giving hands-on care, and those managing care. Newcomers, casual visitors, and longtime attendees are all welcome! Former caregivers–those whose loved ones have already passed away–regularly attend. Former caregivers have been through it all and are invaluable resources to those learning to cope. (Our group is NOT intended for professional caregivers.)
If you are an active caregiver with a loved one at home, consider asking for a “respite care grant” from your county’s agency on aging or from your local caregiver resource center. Such grants pay for a caregiver to be in your home while you attend support group meetings. The www.alz.org/norcal also offers respite grants for those dealing with dementia.
We occasionally have guests. Guests have included a family consultant from Family Caregiver Alliance, a board member of the Lewy Body Dementia Association, and a board member of CurePSP.
We have over 450 members now, with attendance of 20-30 at caregiver support group meetings (among the three simultaneous group meetings). Roughly speaking, of the 450 members, 50% have an LBD connection, 30% have a PSP connection, 18% have an MSA connection, and 2% have a CBS/CBD connection or Atypical Parkinsonism connection.
We look forward to seeing you at some meetings in 2022!
By the way, if your family member with a neurological diagnosis of MSA, PSP or CBD would like to meet virtually with others, let us know. We coordinate virtual meetings for these audiences.