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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PART (primary age-related tauopathy) research
One of Brain Support Network’s missions is to facilitate brain donations around the US for various neurodegenerative disorders and healthy controls. A good percentage of the neuropathology reports are returned with the finding of primary age-related tauopathy (PART). PART is a disorder of the protein tau. To be diagnosed with Alzheimer’s disease (AD), one must have both tau tangles and amyloid plaques. In PART, only the tau tangles are present. And the tau tangles are in the medial temporal lobes. PART is *only* diagnosed through brain donation or brain autopsy.Next Avenue: Preserve Family Relationships With Courageous Conversations
The stress of a family member’s illness can impact interactions. This author has created a checklist to help improve family communication
“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:
Brain donation makes possible research on LATE pathology
Brain Support Network has helped over 1400 families with brain donation. Many times, the neuropathology report shows that the donor had a pathology called LATE, which stands for limbic predominant age-related TAR DNA-binding protein 43. LATE pathology often co-occurs with other pathologies. Recently, the journal “Neurology” published some research about LATE, based on brain autopsies.