Brain Support Network (BSN) began in 2004 as a support group in Northern California for caregivers of individuals diagnosed with atypical parkinsonism disorders, and we shared about 50 emails per year. Today, we have over 500 Northern California members on our email lists, nearly 100 outside of Northern California on our email lists, share about 150 emails per year, and have attendance of 20-35 caregivers at our caregiver-only support group meetings in San Mateo, California.
Caregiver-Only Support Group Meetings
If you 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 and email lists. What’s a caregiver? A caregiver is anyone who has concern for another — not necessarily those providing hands-on care.
Attendees realize that we are not alone, and we can speak openly with others experiencing many of the same issues.
Caregiver-only support group meetings are held Sundays, 5-7pm, in San Mateo. We conduct nine meetings each year (and no meeting has ever been re-scheduled or canceled).
We meet at a casual restaurant. Most attendees have dinner (separate checks). We sit grouped by disorder with the conversation being 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.
Generally, 20 to 35 caregivers attend our meetings and some come from as far away as Lakeport and Monterey.
We ask that support group meeting attendees register for meetings by noon the Saturday before each meeting. Registration allows us to prepare a seating chart and to ensure that adequate volunteers with disorder-specific expertise are present to facilitate discussions.
We limit these meetings to caregivers to allow candid conversations that would not be possible in the presence of those diagnosed and, for a brief interlude, to maintain a focus on the needs of the caregiver. Let us know if you’d like to attend a meeting.
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. Contact us if you would like to be added to the email lists and which list you’d like to join: PSP, MSA, CBD, LBD, general caregiving, and dementia caregiving.
All are welcome to join: those with a diagnosis, family members, caregivers, healthcare professionals, and community members. We send about 150 emails a year to all of our email lists. The most emails are sent to the general caregiver email list. The disorder-specific email lists might average several emails each month.
Most of the emails we share are also posted to our blog and our Facebook page.
Connections Among Those With a Diagnosis
Do you have a diagnosis of LBD, PSP, MSA, CBD, or atypical parkinsonism, and live in Northern/Central California? Are you interested in connecting with others, perhaps face to face, who live nearby? We invite you to send us a short description about yourself and we’ll send it to the relevant disorder-specific email list in Northern/Central California. We have helped many make important connections with others.
Other Support Options
If you live outside of Northern/Central California, see our links to support groups in other geographic areas, online support groups, or webinar-based support groups.