One of Brain Support Network’s three missions is to coordinate the Northern California caregiver-only support group for those who have family members or loved ones with a diagnosis of one (or more) of four disorders:
- LBD (Lewy body dementia). This disorder is also called Dementia with Lewy Bodies or Parkinson’s Disease Dementia.
- PSP (progressive supranuclear palsy)
- MSA (multiple system atrophy)
- CBD (corticobasal degeneration). This disorder is also called corticobasal syndrome.
These four neurodegenerative conditions have much in common.
We also welcome those who have family members with an atypical parkinsonism or Parkinson’s Plus diagnosis.
We have established our 2017 caregiver-only support group meeting schedule. As always, we will be having nine meetings this year.
If you’d like to be added to the support group meeting reminder email list, please contact us and let us know what disorder you are coping with and which loved one has the diagnosis.
WHO IS INVITED
All caregivers are invited — primary, secondary, those giving hands-on care, those managing care, and those giving emotional and informational support.
Newcomers, casual visitors, and longtime attendees are all welcome!
Former caregivers — those whose loved ones have already passed away — regularly attend; these people have been through it all and are invaluable resources to those learning to cope.
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 (see caregiver.org/californias-caregiver-resource-centers). Such grants pay for a caregiver to be in your home while you attend support group meetings. The local chapter of the Alzheimer’s Association (alz.org/norcal) also offers respite grants for those dealing with dementia.
We occasionally have guests. Guests have included a neurologist, a family consultant from Family Caregiver Alliance, the president of the board of the Lewy Body Dementia Association, the co-founder of the LBDA, and the moderator of the PSP Forum.
HOW IT WORKS
We generally sit at one very large table, grouped by disorder. For the last several years as our numbers have grown, some of the meeting regulars (one or two for each disorder) have become discussion facilitators. They include: Phil, Cristina, Ellen, and Sharon (PSP), Candy, Karen L., and Lily (MSA), Dick, Mindy, Val, and Cheryl (CBD), and Dianne, Alexa, and Bari (LBD).
We manage a lending library where books, DVDs, and videos get passed around. And often at meetings group members bring items to give away.
SUPPORT GROUP DIRECTORY
At the beginning of 2012, BSN Board member Phil Myers suggested distributing a sign-up list so as to facilitate sharing contact info for anyone interested. Phil emails out the updated directory after each meeting; it includes all the people who have attended a meeting in the past three years. For privacy reasons, only those who are on the list may receive a copy.
RSVP PROCESS
One week before each caregiver support group meeting, we send out an email reminder and ask for RSVPs. This reminder comes from the “BSN Support Group” email address.
If you’d like to be added to the support group meeting reminder email list, please contact us and let us know what disorder you are coping with and which loved one has the diagnosis.
CAN’T ATTEND OUR MEETINGS
If you don’t live in Northern California or aren’t able to attend our meetings, feel free to join our email lists.
Also, check out our webpage about online or phone-based support groups.
Support is critical!
Robin