Archives for May 2020

PD GENEration: Mapping the future of Parkinson’s disease – Webinar notes

PD GENEration: Mapping the future of Parkinson’s disease – Webinar notes

In early May, the Parkinson’s Foundation presented a webinar on a genetic testing initiative called PD GENEration, featuring Dr. Martha Nance. She discussed the relevance of genetics for those with Parkinson’s disease (PD), provided an overview of the PD GENEration study, and summarized what we have learned from the initiative so far and what we hope to learn in the future. We at Stanford Parkinson's Community Outreach viewed the webinar and are sharing our notes.  

Advanced stage and end-of-life care – Webinar notes

Advanced stage and end-of-life care – Webinar notes

In early May, the UCSF Memory and Aging Center (MAC) presented the fifth and final webinar in its series on caregiving for those with Lewy body dementia (LBD), a discussion of advanced-stage and end-of-life care topics. While the webinar was geared towards those caring for individuals with LBD, we felt the content would also be helpful for others with cognitive impairment or Parkinson’s disease dementia. The speaker was Maya Katz, MD, a movement disorders specialist with the UCSF Weill Institute for Neurosciences. She covered what caregiving is like in advanced LBD, end-of-life care, indicators of the individual’s prognosis, and advance care planning. We at Stanford Parkinson's Community Outreach viewed the webinar and are sharing our notes.

Ask the Expert: Parkinson’s and Hospitalization – Webinar notes

Ask the Expert: Parkinson’s and Hospitalization – Webinar notes

In early April, the Parkinson’s Foundation offered a Facebook Live presentation on hospitalization and Parkinson’s disease (PD), featuring Dr. Michael Okun, a movement disorders specialist at the University of. He answered questions about PD and hospitalization, provided tips about what to do if you or your loved one with PD is hospitalized, and discussed how to get the best care possible during an anticipated or emergency hospital stay. We at Stanford Parkinson's Community Outreach viewed the webinar and are sharing our notes.  

Stanford Movement Disorder Specialist to discuss the status of research in PD, Webinar, June 2

Stanford Movement Disorder Specialist to discuss the status of research in PD, Webinar, June 2

Brent Bluett, DO, Stanford Movement Disorder Specialist, will discuss “The Status of Research in PD: Is There Hope?” online on Tuesday, June 2, beginning at 3:00pm Pacific Time. The event is free, but pre-registration is required.

Advocacy in healthcare and community settings – Webinar notes

Advocacy in healthcare and community settings – Webinar notes

In late April, the UCSF Memory and Aging Center (MAC) presented the fourth webinar in its series on caregiving for those with Lewy body dementia (LBD). The topic was how to be an advocate for your loved one with LBD in both a healthcare setting and a community setting. While the webinar was geared towards those with LBD, we felt the content would also be helpful for others with cognitive impairment or Parkinson’s disease dementia. The speakers were Sarah Dulaney, Clinical Nurse Specialist with the MAC, and Helen Medsger, an LBD family caregiver, advocate, and support group leader. We at Stanford Parkinson's Community Outreach viewed the webinar and are sharing our notes. 

Is a Parkinson’s pandemic coming? – Webinar notes

Is a Parkinson’s pandemic coming? – Webinar notes

In mid-March, the Davis Phinney Foundation offered a webinar on the rise of Parkinson’s disease (PD) worldwide, featuring Michael Okun, MD, a movement disorders specialist at the University of Florida who is a co-author of the new book, Ending Parkinson’s Disease. Dr. Okun discussed the current knowledge about how to prevent PD and what actions individuals can take to try to impact the increase of PD long-term. There was a Question and Answer session as well. We at Stanford Parkinson's Community Outreach listened to the webinar and are sharing our notes.  

Deep Brain Stimulation Forum, hosted by Davis Phinney Foundation – Webinar notes

Deep Brain Stimulation Forum, hosted by Davis Phinney Foundation – Webinar notes

In April 2020, the Davis Phinney Foundation for Parkinson’s presented an online Deep Brain Stimulation (DBS) Forum. The webinar featured two movement disorder specialists, including Helen Bronte-Stewart, MD, MSE with Stanford, a couple of neurosurgeons, two people with Parkinson's, and two scientists from device manufacturers.  The speakers described DBS surgery, the best candidate, some limiting factors for qualifying as a candidate, current best practices, future improvements, programming considerations, the reduction of medications, and the efficacy of DBS as Parkinson's progresses.  We at the Stanford Parkinson's Community Outreach listened to the webinar, and are sharing our notes.

2020 Care Partner Summit/Cumbre Para Cuidadores, Saturday, May 16, 9:00am-12:00pm

2020 Care Partner Summit/Cumbre Para Cuidadores, Saturday, May 16, 9:00am-12:00pm

The Parkinson’s Foundation is presenting its bi-annual Care Partner Summit/Cumbre Para Cuidadores virtually on Saturday, May 16, from 9:00am-12:00pm. The theme this year is “Planning for the Unpredictable Path of Parkinson’s Caregiving.” The Summit is recommended for anyone caring for someone living with Parkinson’s, including spouses, partners, adult children or friends. The event is free, but pre-registration is required.

Insight into Parkinson’s 2020, Day 3 – Conference notes

Insight into Parkinson’s 2020, Day 3 – Conference notes

Insight 2020 is the largest online conference for people with Parkinson’s disease (PD), their caregivers, and those who work with the PD community. It took place this year on April 1-3, and covered a wide range of topics, from living positively to the latest PD research. We at Stanford Parkinson’s Community Outreach attended all three days of the virtual conference and took notes on some of the talks that seemed most interesting or relevant to our audience. Highlights from Day 3 of the conference are below.

Sing Loud for PD. A weekly singing program throughout the month of May

Sing Loud for PD. A weekly singing program throughout the month of May

Offered in collaboration with the American Parkinson’s Disease Association (APDA), Guild Hall, and Stony Brook Southampton Hospital’s Center for Parkinson’s disease, Sing Loud for PD is a chorus for people living with PD and their care partners. This fun, virtual program will unite us in song and music. No previous musical experience is required and all lyrics will be provided. The program is free, but registration is limited, and required.