Local support group member June is a practicing nurse. And she’s been a hospice volunteer for many years. Her father recently passed away; his clinical diagnosis was Lewy body dementia. His main symptoms were parkinsonism. Her mother was the primary caregiver. The mother was able to keep the father at home. Daughter June provided care and some oversight. Her father died in February 2023. He was on hospice since early January 2023. June recently shared some “considerations in caregiving” which apply to caregivers of those with Parkinson’s and all the atypical parkinsonism disorders.
Podcast on therapeutic deception and how dementia affects the family
In a recent episode of “The Doctor’s Art” podcast (May 16, 2023), Sandeep Jauhar, MD, PhD describes his role as a son and caregiver for a father with dementia. Dr. Jauhar’s recent book on this subject is titled “My Father’s Brain: Life in the Shadow of Alzheimer’s.”
“The swallow” – poem about a swallow study (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 his first swallow study.
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CurePSP Wellness Workshop: Holistic Wellness for PSP, CBD and MSA
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.)