We meet monthly, generally on the second Sunday, 2-2:30pm. The meetings are loosely facilitated by a local support group member with a CBS diagnosis. Continue reading
Category Archives: Living with a Neurological Condition
2024 MSA (those with diagnosis) Virtual Local Support Group Meeting Dates
We meet monthly, generally on the 2nd Sunday from 3-4pm. The discussion is self-led.
Local group member Camilla on corticobasal degeneration and palliative care
Local support group member Camilla recently spoke to the Palo Alto senior community where she lives about corticobasal degeneration (CBD) and palliative care. CBD is a very rare disorder. It is sometimes called an atypical parkinsonism disorder. Palliative care is little-understood field of medicine that focuses on comfort and the whole person. These are notes Camilla shared of her remarks.
Gadgets, equipment, and tricks for mobility, safety, mealtime, etc.
Brain Support Network (BSN) and Stanford’s Parkinson’s Community Outreach co-hosted a virtual meeting in late August 2023. Attendees were invited to share “gadgets” (equipment, tools) or “tricks” (techniques with every-day items) they find useful in caregiving for family members with Lewy body dementia, progressive supranuclear palsy, multiple system atrophy, corticobasal degeneration, and Parkinson’s Disease.
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“On a Thimble” – poem about focus (by someone with PSP)
Florida-based poet Carlton Johnson has been diagnosed with progressive supranuclear palsy. He published a book titled “A Thimble of Time” in 2020 (available on Amazon). Here’s a poem about focus, despair, and stumbling over words: