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.
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.
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.
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.
Since parkinsonism disorders can be confused for each other — Parkinson’s disease, Lewy body dementia, progressive supranuclear palsy, multiple system atrophy, corticobasal degeneration, and vascular parkinsonism — especially early on in the disease process, perhaps more important than the clinical diagnosis is the prognosis.