BSN Support Group

Today, Brain Support Network (BSN) coordinates five monthly support groups for those in Northern or Central California who are coping with LBD, PSP, CBD, and MSA. We have over 500 caregivers on our meeting lists, with attendance of 20-35 caregivers at our meetings. We over over 200 people with an MSA, PSP, or CBD diagnosis on our meeting lists, with attendance of 3-10 at our meetings. BSN began in 2004 as an atypical parkinsonism caregiver-only support group.

Caregiver-Only Support Group Meetings

If you live in Northern or Central California and have a spouse, parent, sibling, or friend diagnosed with:

  • Lewy Body Dementia (or Dementia with Lewy Bodies or Parkinson’s Disease Dementia)
  • Progressive Supranuclear Palsy
  • Multiple System Atrophy
  • Corticobasal Degeneration (or Corticobasal Syndrome)
  • Atypical Parkinsonism (or Parkinson’s Plus)

…you are welcome to join our caregiver support group meetings. (A caregiver is anyone who has concern for another — not necessarily those providing hands-on care.) By gathering with others in a similar journey, we realize we are not alone and can speak openly with those who understand. Limiting these meetings to caregivers allows for candid conversations that would not be possible in the presence of those diagnosed and for a focus on the needs of the caregiver, if only briefly. Complete our online form if you’d like to join us.

Three simultaneous caregiver-only support group meetings are held — LBD, PSP/CBD (together), and MSA. These meetings are usually on the second Sunday of each month, 5-6:30pm. (An exception is always made in May, when we meet on the third Sunday. Depending on the timing of Easter and whether a Bay Area-based sports team makes it to a championship game, other exceptions may occur.)

We alternate between virtual meetings on odd-numbered months and in-person meeting on even-numbered months. For the in-person meetings, we meet at a casual restaurant in San Mateo, where most attendees have dinner (separate checks).

Whether virtual or in-person, the conversation is guided by volunteers who have already lost loved ones with that disorder. In most cases, the loved ones’ diagnoses were confirmed through brain donation that was arranged by Brain Support Network.

We request RSVPs by noon the Saturday before a meeting. Advance registration allows us to ensure that adequate volunteers with disorder-specific expertise can attend to facilitate discussions. If we have a high number of attendees, we try to break into smaller groups to allow for everyone to have several opportunities to speak.

Connections Among Those With a Diagnosis

Do you have a diagnosis of PSP, CBD, MSA, or atypical parkinsonism, and live in Northern/Central California? Are you interested in connecting with others?

We offer monthly virtual support groups meetings for those with a diagnosis of:

  • MSA: meetings alternate between the second Sunday, 3-4pm, even-numbered months and the first Wednesday, noon-1pm, even-numbered months.
  • PSP/CBD: meetings are on the second Sunday, 2-2:30pm. (The May meeting is on the third Sunday.)

These meetings are loosely-facilitated by others with a diagnosis. Caregivers may join along with their family member with a diagnosis as long as the caregiver has as light a footprint as possible. Complete our online form if you’d like to join us.

Other Support Options

See our links to all Northern and Central California support groups for LBD, MSA, and PSP/CBD, support groups in other geographic areas, online support groups that are available anyone, or monthly virtual support groups.

Email Lists

You are invited to join our email lists.  Emails include:

  • latest research and treatment on LBD, PSP, MSA, or CBD
  • newspaper articles about people challenged by these disorders
  • blogs by people challenged by these disorders
  • lecture notes
  • links to important online videos and other resources
  • caregiving tips
  • info about Northern and Central California events that may be of interest

We try to stay up to date so you don’t have to spend precious time scanning the medical journals (etc.) for the best material.

Complete our online form to be added to the email lists and which list you’d like to join: PSP, MSA, CBD, LBD, general caregiving, and dementia caregiving.

Most of the emails we share are also posted to our blog and our Facebook page.