In December 2023, Brain Support Network and Stanford Parkinson’s Community Outreach co-hosted a discussion for caregivers to share the top three things they have learned about caregiving. Caregivers offered advice to each other, including advice caregivers wished they could tell their younger selves.
Category Archives: MSA
2024 MSA (those with diagnosis) Virtual Local Support Group Meeting Dates
Here’s information about the 2024 Brain Support Network virtual support group meetings for those with an MSA (multiple system atrophy) diagnosis who live in Northern or Central California.We meet monthly, generally on the 2nd Sunday from 3-4pm. The discussion is self-led.
CurePSP Wellness Workshop: Holistic Wellness for PSP, CBD and MSA
CurePSP is hosting a two-hour virtual wellness workshop on Wednesday, April 19 starting at 3pm PT. Speakers will focus on self-care for better sleep and wellbeing; seated movement and breathwork; and music therapy. (The presentations will be recorded and posted on the CurePSP YouTube channel.) Following the presentations, participants can join a one-hour interactive discussion group, reflecting on what wellness means to them. Registration is free.Wednesday, April 19, 2023 • 12:00 – 3:00 PM ET
Recommended lifestyle changes in those with orthostatic intolerance
We saw this interesting graphic — and list of ten tips — in a blog post about orthostatic intolerance. The blog post addresses dysautonomia and POTS (postural orthostatic tachycardia syndrome). Some (not all!) of the ten tips apply to those dealing with multiple system atrophy and Lewy body dementia.
“Managing Swallowing Changes” – CurePSP webinar notes
In late June 2022, CurePSP (curepsp.org) hosted a webinar on “Managing Swallowing Changes in PSP, CBD, and MSA” with Stanford speech language pathologist (SLP) Julie Hicks. Her presentation provided general information about working with an SLP, what a swallowing evaluation looks like, and what treatment might involve. In the question-and-answer period, Julie Hicks addresses when to see an SLP, the use of feeding tubes, practical tips families can use to help people slow down and control impulsivity while eating, and how to find an SLP with experience treating those with parkinsonism disorders.