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.)
Category Archives: PSP
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.
“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.
Silver linings to Parkinson’s and other neurological disorders?
In January 2022, neurologist Dr. Bas Bloem posted a video online, commenting on whether there were any silver linings to being diagnosed with Parkinson’s. He said that it was his perception that receiving a PD diagnosis often caused people to pause and reflect, and decided to put energy into their families, enjoy their children, and travel to dream destinations.
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