Caregivers need to have their own support group meetings or gatherings because they need to vent, share, learn tips and resources, and receive support from others walking the same path. Ideally, a caregiver to someone with Parkinson’s Disease can attend a PD-specific caregiver support group. Or someone dealing with Lewy Body Dementia can attend an LBD-specific caregiver support group. And so on. With the pandemic, many support groups have moved to meet virtually while others have gone on hiatus until in-person meetings can occur once again. Here’s our list of the status of PD and atypical parkinsonism caregiver-only support group meetings in the SF Bay Area, other parts of Northern California, and Central California.
… Full Story>Archives for 2020
New Frontiers in Neuroprotection – Webinar Notes
In early July, PMD Alliance presented a talk by Dr. Anthony Lang titled “New Frontiers in Neuroprotection.” His analysis explores the many ways researchers are attempting to slow or modify the progression of Parkinson’s and, more importantly, how promising each one seems to him. We at Stanford Parkinson’s Community Outreach listened to the webinar and are sharing our notes.
… Full Story>Social Connection and Parkinson’s – Webinar Notes
On April 15th, Davis Phinney Foundation for Parkinson’s presented a webinar entitled, “Social Connection and Parkinson’s.”
We are currently living in a time of enforced social isolation because of COVID-19. For a variety of reasons, many people living with Parkinson’s may have chosen to isolate themselves before this time. This webinar explores the difference between social isolation and loneliness, the biology of loneliness, and the value and health benefits relationships bring.
… Full Story>Parkinson’s Disease Compared to Atypical Parkinsonism Disorders – Webinar Notes
In late July, PMD Alliance (pmdalliance.org) hosted a one-hour webinar with Irene Litvan, MD, movement disorder specialist at UCSD. The title of the webinar was “Doc, why don’t I have PD?” Dr. Litvan says that some of her patients ask her this, pointing out that they have slowness, stiffness, and tremor. Her presentation focused on atypical parkinsonism disorders as a whole and the differences between Parkinson’s Disease (PD) and these atypicals. Of all the atypical parkinsonism disorders, she spent the most time on progressive supranuclear palsy and multiple system atrophy, just a bit of time on Lewy body dementia, and almost no time on corticobasal degeneration. The question-and-answer session included a lot of comments on PD. We at Stanford Parkinson’s Community Outreach listened to the webinar and are sharing our notes.
… Full Story>Those with Parkinson’s Disease Suffer from Pandemic’s Disruptions, According to Study
This spring, over 5400 Parkinson’s patients, including 51 who had COVID-19, took an online Fox Insight survey, organized by the Michael J. Fox Foundation for Parkinson’s Research. According to Caroline Tanner, MD, PhD, of the University of California San Francisco, “What was really remarkable was the number of people who didn’t have COVID, but who did suffer from the experience of the pandemic.” MedPageToday noted that “Medical care (64%), exercise (21%), and social activities (57%) were disrupted for these patients, and many reported worse Parkinson’s motor (43%) and non-motor (52%) symptoms.” While the survey showed the resilience of the Parkinson’s community, it also highlighted disparities, Tanner pointed out. “People with lower incomes or people who are nonwhite have less opportunity to use alternative means of health care and connection,” she said. “That’s something we continue to need to work on.”
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