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 his first swallow study.
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Category Archives: PSP
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
Study for the Treatment of Disturbed Sleep in Progressive Supranuclear Palsy (PSP)
If you have progressive supranuclear palsy (PSP) and are interested in participating in UCSF research about sleep, from your home, please check out this study website. There’s a 10-minute online screening survey you can take to see if you are eligible. (A representative can also fill out the survey for you.)
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.
High burden on those with PSP and their caregivers, regardless of type
This international study (US and five European countries) found that there is a high burden of progressive supranuclear palsy on patients, caregivers, and healthcare systems, regardless of PSP phenotype.