Palo Alto Parkinson's Support Group

Stanford's APDA Information & Referral Center and Stanford Parkinson's Community Outreach coordinate a local Parkinson's Disease (PD) support group in Palo Alto.  Pre-pandemic, we met at a senior housing community and, prior to that, at a senior center.  As of March 2021, we are now meeting virtually.  Our meetings highlight resources we believe the community should know about or local resources. 

We meet the second Wednesday of each month, 2:30-4pm PT.  If you are interested in being added to the meeting reminder email list, please contact Robin Riddle, phone 650-724-6090.

At the regular Wednesday, November 10th virtual support group meeting, the topic was cutting edge, basic science research into PD going on at Stanford. The guest speaker was:

Birgitt Schüle, MD, researcher with Stanford Pathology.

She spoke on “Alpha-synuclein as a therapeutic target for Parkinson’s disease: challenges and opportunities.” Dr. Schüle focuses on medical genetics and stem cell modeling to unlock disease mechanisms and pathways leading to neurodegeneration in Parkinson’s disease and related disorders, and to develop new therapeutic strategies to advance precision medicine. The line of research she is pursuing runs counter to current scientific concepts. She is investigating whether common genes and pathways underlie both neurodegeneration and neurodevelopment. This knowledge could help guide future therapeutic strategies of lowering alpha-synuclein in Parkinson’s disease and could provide insights into early, potentially reversible disease mechanisms critical for both neurodevelopment and neurodegeneration.

Meeting materials:

> Cutting Edge Research at Stanford: Alpha-synuclein as a therapeutic target for Parkinson’s disease: challenges and opportunities (PDF)

View Webinar Recording

The October 13, 2021 regular meeting focused on medication and non-medication treatments for Parkinson's disease -- recognizing that everyone is different. The speaker was:

Leila Montaser Kouhsari, MD, movement disorder specialist, Stanford University.

Meeting materials:

> Getting the Best Treatment for YOUR PD (PDF)

View Webinar Recording

The September 8, 2021 regular meeting focused on treating Parkinson's disease (PD) with a neuro-palliative approach for quality-of-life and wellness. The speaker was:

Maya Katz, MD, movement disorder specialist, Stanford University. 

She addressed:

• How PD can be treated with a focus on wellness and quality-of-life
• Importance of exercise (physical/movement, speech/voice, etc)
  
• Role of resiliency in PD
  
• "Neuro-palliative":  what does that mean?
  

Meeting materials:

> Treating PD -- Quality of Life, Wellness, and a Neuro-palliative Approach (PDF)

> "Daily Wellness Journal."  Created by Judy Long, Chaplain and Jana Guenther, Research Coordinator, University of California, San Francisco

View Webinar Recording

The August 11, 2021 regular meeting focused on cutting edge, basic science research into PD going on at Stanford.  The speaker was:

Xinnan Wang, MD, PhD, Stanford Neurosurgery. 

She addressed:

• Why an effective treatment relies on understanding how neurodegeneration occurs
• Biomarkers -- the definition and importance in monitoring PD progression (especially during drug trials)
  
• Her lab's discovery that a protein called Miro1 found in skin cells is impaired in both hereditary and sporadic Parkinson’s
• The strategy of coupling Miro1-based therapy with a Miro1 diagnostic tool for future clinical trials

View Webinar Recording

The July 14, 2021 regular meeting focused on PD exercise. The speaker was:

Theresa Najjar, DPT, physical therapist, Synaptic PT, Sunnyvale. 

She addressed:

• "Fab 4 Fitness Buckets"
• Cardiovascular intensity for PD exercise

Dr. Najjar currently teaches PD exercise classes virtually.  Here's an extensive list of live, virtual PD exercise classes, including those offered by Dr. Najjar.

Note that the recording below includes Dr. Najjar's prepared presentation and question-and-answer sessions.  Due to liability reasons, Dr. Najjar asked us not to record and share the exercise demonstration part of the meeting.

Meeting materials:

> Fabulous Fitness and Appropriate Cardiovascular Intensity for PD Exercise (PDF)

View Webinar Recording

There was a special meeting on Friday, June 25, 2:30-4pm, with a speaker not available during our regular meeting day/time. The topic was "Palliative Care for PD."  The speakers were:

Steve Lai, MD, palliative care, Palo Alto Medical Foundation (PAMF)
Margaret Stephens, LCSW, social worker, PAMF, Palo Alto.

They addressed:

• Palliative care - overview; how this can help for someone with PD; services provided by PAMF
• POLST form (though not a lot of time will be spent on this)
• Common causes of death for those with PD
• Hospice (though not a lot of time will be spent on this)

Meeting materials:

> Palliative Care and End-of-life for PD presentation (PDF)

View Webinar Recording

The June 9, 2021 regular meeting focused on "Driving and PD." The speaker was:

Julie Muccini, OTR/L, occupational therapist, Stanford University.

She addressed:

• The issues those with PD might have that compromise driving ability
• The issues that seniors might have that compromise driving ability
• State law in California about PD and driving
• How driving can be objectively evaluated
• Transportation options

Meeting materials:

> Drivng and PD presentation (PDF)

View Webinar Recording

The May 12, 2021 meeting focused on "Care Management for PD."  The speaker was:

Jill Melvin, LCSW, clinical care manager, Sage Eldercare, Burlingame. 

She addressed:

• What is "care management"
• Do I need a "care manager"
• How can a care manager help me
• Examples of care management for Parkinson's Disease
• What if I have only a short-term need
• What if I have an ongoing need for help
• How to find/hire a care manager

Meeting materials:

> Care Management for PD presentation (PDF)

View Webinar Recording

The March 2021 meeting focused on "Options for Parkinson's Care."  The two speakers were:

#1 Leslie Kefer, Home Instead, Sunnyvale.

(This office services many cities around Sunnyvale, including Palo Alto.) She addressed:

• Options for Parkinson's care (including home care, facility placement, etc.)
• What are home care agencies doing to keep people safe during the pandemic
• How to select a home care agency
• How to interview home care aides
• Having a "70/40" discussion -- what the heck is that?!

Meeting materials:

> Home Instead presentation
> List of questions to ask a home care agency (PDF)
> List of medical tasks home care agency caregivers cannot perform (PDF)
> 70/40 booklet (PDF)

#2 Corie Mina, Amedisys, Campbell.

(This office services many cities in our area, including Palo Alto.) She addressed:

• Options for Parkinson's care (including home health -- what the heck is that?!)
• What are home health agencies doing to keep people safe during the pandemic
• How to select a home care agency
• Therapies (PT, OT, ST) available through home health from therapists who may be knowledgeable about Parkinson's disease
• "Family/caregiver training" given during home health visits

Meeting materials:

> Amedisys presentation (PDF)

View Webinar Recording