Longtime Brain Support Network supporter, friend, and local support group member Helen Bundy Medsger will be speaking virtually at a Parkinson’s support group meeting, on Monday, June 5, 2:30pm. Her topic is “How to turn challenges into gifts – a care partner’s perspective.”
Monthly Archives: May 2023
Topaz: Trial to Test a Drug to Prevent Hip Fractures in Parkinsonism
People with parkinsonism have a much higher risk of hip and other fractures. Our friends at UCSF’s Movement Disorders Center and other US clinics are recruiting for the TOPAZ (Trial of Parkinson’s and Zoledronic Acid) study.
Researchers will test if zoledronate, an FDA-approved medication for osteoporosis (thinning of the bone), can prevent fractures in people with parkinsonism, whether or not they have osteoporosis. Using zoledronate for this purpose is investigational.
Enroll today! Participate in the TOPAZ study remotely, from the comfort of your home. You could receive $100 upon enrollment and $50 per year during the study.
To be eligible, individuals must be at least 60 years of age with NO prior hip fracture, AND have been diagnosed with any of the following conditions:
- Parkinson’s disease
- Dementia with Lewy bodies
- Multiple system atrophy
- Progressive supranuclear palsy
- Cortical basal degeneration
- Vascular parkinsonism
- or another form of neurodegenerative parkinsonism
To learn more or to enroll, visit the study website TOPAZstudy.org. If you have questions, email [email protected], or call 415-317-5748.
Considerations in Caregiving (from a local support group member)
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.
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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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