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.
2022
- October - Driving and PD (Muccini, Stanford) plus Freezing of Gait Research Update (O'Day, Stanford)
- August - Management of Voice, Speech and Swallowing Changes in PD (Hicks, Stanford)
- July - A Glove To Treat Parkinson’s Disease? (Tass, Stanford)
- June - Depression, Anxiety, and Apathy in PD (Chattree, Stanford)
- May - PD Exercise Fundamentals and Class (Larsen, Keep Moving with Jen)
- March - Updates in PD (Chattree, Stanford)
- February - Fall Prevention (Corman, Stanford)
2021
- November - Alpha-synuclein as a Therapeutic Target (Schüle, Stanford)
- October - Getting the Best Treatment (Montaser Kouhsari, Stanford)
- September - A Neuro-Palliative Approach (Katz, Stanford)
- August - Skin Cells as a Biomarker? (Wang, Stanford)
- July - Fab 4 Fitness Buckets (Najjar, Synaptic PT)
- June (Extra Meeting) - Palliative Care and End-of-life (Lai and Stephens, PAMF)
- June - Driving (Muccini, Stanford)
- May - Care Management (Melvin, Sage ElderCare)
- March - Options for Parkinson's Care: Home Care and Home Health (Kefer, Home Instead and Mina, Amedisys)
At the regular, Wednesday October 12th virtual support group meeting, the two guest presenters will be:
#1 Julie Muccini, OTR/L, occupational therapist, Stanford University.
She will address:
Driving and Parkinson's
She will focus on:
- 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:
View Driving and PD Webinar Recording
#2 Hannah O'Day, PhD, research bioengineer, Stanford University.
She will address:
- Research Update on Freezing of Gait in PD
Meeting Materials:
View Freezing of Gait Research Update Webinar Recording
At the regular, Wednesday August 10th virtual support group meeting, the guest presenter was:
Julie Hicks, SLP, Speech-Language Pathologist, Stanford Outpatient Neurologic Rehabilitation Program
She addressed:
Management of Voice, Speech and Swallowing Changes in PD
Denise Dagan recently described a webinar by Julie Hicks as the "best presentation on speech and swallowing problems" she has seen! Join us to learn firsthand why Denise said that!
Meeting Materials:
> View Management of Voice, Speech and Swallowing Changes in PD slides
Julie Hicks recently spoke on the same topic at a conference for progressive supranuclear palsy, an atypical parkinsonism disorder. Stanford's Denise Dagan attended that virtual talk and took notes. Her notes are posted to the Brain Support Network webpage.
> Notes of a similar talk by Julie Hicks, posted to the Brain Support Network blog
View Webinar Recording
At the regular Wednesday, July 13th virtual support group meeting, the speaker provided an overview of research and clinical trials for a non-invasive, vibrotactile coordinated reset stimulation for treating PD.
The speaker was:
Peter Tass, MD, PhD, Stanford Neurosurgery.
PD symptoms are associated with abnormal brain activity -- in particular, abnormal synchronization within large neuronal populations. In detailed computational studies done by Dr. Tass and his lab, he has shown that coordinated reset stimulation induces long-lasting desynchronization by modifying the structure and function of connections between neurons. The corresponding therapeutic effects were validated in Parkinsonian monkeys as well as in Parkinson’s patients treated with deep brain electrical CR stimulation. Now Dr. Tass is studying the effects on those with PD who are wearing "gloves" that deliver weak, non-painful vibratory CR bursts to the fingertips. If you are interested in participating in future clinical trials, please email Dr. Tass's team. If true, mention that you live in the Palo Alto area.
View Webinar Recording
At the regular Wednesday, June 8th virtual support group meeting, the topic was depression, anxiety, and apathy in Parkinson's. These three non-motor symptoms are quite common in PD, especially depression. The speaker addressed how these symptoms may overlap and treatment. The speaker was:
Gaurav Chattree, MD, movement disorder fellow, Stanford.
Meeting materials:
View Webinar Recording
At the regular Wednesday, May 11th virtual support group meeting, the topic was "Keep Moving with Jen", with a focus on the fundamentals of exercise for Parkinson's.
Jen Larsen, PD exercise specialist.
Jen gave a short presentation on the fundamentals of exercise for Parkinson's. Jen believes that PD movement programs should challenge participants both physically and mentally. Then Jen invited everyone to participate in a one-hour PD exercise class, highlighting several different approaches to Parkinson's-specific movement, including PWR!, LSVT-BIG, and PD Warrior. She started off with stretches that people can do in bed each morning. Then she had a seated workout, followed by a standing workout. The workout focused on flexibility, balance, and strength. Jen offers virtual and in-person PD exercise classes on the Peninsula. Plus, she has a YouTube page of 60 exercise videos.
> Visit her website for links and info
Stanford has two web pages if you are interested in PD exercises: a list of live, online classes and a list of PD exercise videos.
View Webinar Recording
At the regular Wednesday, March 9th virtual support group meeting, the topic was "Updates in PD," with a focus on new drugs and treatments available.
Gaurav Chattree, MD, movement disorder fellow, Stanford.
Dr. Chattree also shared exciting developments in the pipeline.
Meeting materials:
View Webinar Recording
At the regular Wednesday, February 9th virtual support group meeting, the topic was fall prevention in PD and for us all. Plus, Stanford's highly regarded "Farewell to Falls" program was introduced. The guest speaker was:
Ellen Corman, MRA, Manager, Injury Prevention and Community Engagement, Stanford Health Care.
She shared statistics about the high cost of falls, fall prevention tips, what people who enroll in the Farewell to Falls Program can expect and who qualifies for the program.
Meeting materials:
View Webinar Recording
November 2021 Meeting - "Cutting Edge Research at Stanford: Alpha-synuclein as a therapeutic target for Parkinson’s disease: challenges and opportunities"
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:
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:
View Webinar Recording
September 2021 Meeting - "Treating PD -- Quality of Life, Wellness, and a Neuro-palliative Approach"
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
August 2021 Meeting - "Cutting Edge Research at Stanford: Can Skin Cells Be a Biomarker and Lead to Development of a Drug Treatment?"
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:
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:
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:
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:
View Webinar Recording
