Palo Alto Parkinson's Support Group

At the November 13, 2024 Palo Alto PD support group, the main speaker was:

Jocelyn Jiao, MD, Stanford Movement Disorders Clinic and Stanford Palliative Care

She discussed palliative care, the new Neuro Palliative Care Clinic at Stanford, when someone is eligible for hospice, and the sorts of discussions those with PD and families might have with the palliative care team.

> View Dr. Jiao's Slides

View "Caring for the Whole Person (Neuro-Palliative Care)" Webinar Recording

On Wednesday, November 13, senior research scientist Dr. Eva Müller-Oehring briefly discussed a study to determine the impact of Parkinson's Disease on cognition, motor function, and sleep.

Research coordinator Daria Shariff is signing up those with PD and healthy controls to participate.

Contact Daria via email: hivpd23@gmail.com or phone: 650-492-8837.

Dr. Müller-Oehring noted that those with HIV have already been enrolled in this study so that's why "HIV" is part of the study name. Right now, the focus is on enrolling those with PD and healthy controls.

> View Stanford Research: Brain, Sleep, and Cognition Slides

View "Stanford Research:  Brain, Sleep, and Cognition (PD, Healthy Controls)" Webinar Recording

At the October 25, 2024 Palo Alto PD support group meeting, the speaker was:

Mitchell Miglis, MD, autonomic disorders specialist, Stanford

Topic: Sleep Issues in PD

> View Dr. Miglis' Slides

View "Getting Your Best Sleep in Parkinson's Disease" Webinar Recording

At the September 11, 2024 Palo Alto PD support group meeting, the speaker was:

Hengameh Zahed, MD, Stanford movement disorder specialist

Topic: Updates on DBS

Note: Speaker audio quality was poor

> View Dr. Zahed's Slides

View "Updates on DBS" Webinar Recording

At the July 10, 2024 joint meeting of the Palo Alto PD support group and the Stanford DBS support group, the speaker was:

Ashwin Ramayya, MD, Stanford Neurosurgery

The speaker's presentation was mostly about deep brain stimulation (DBS) surgery, though he did mention focused ultrasound. Nearly all of the attendee questions were about DBS surgery. (Dr. Ramayya kindly filled in for Dr. Vivek Buch, who had an urgent neurosurgery case.).

> View Dr. Ramayya's Slides

Dr. Ramayya requested to keep his presentation video private.

At the May 8, 2024 Palo Alto PD support group, the speaker was:

Tricia Catiggay, OTR/L, occupational therapist with Stanford Healthcare

Topic: Fall Prevention (including Farewell to Falls and A Matter of Balance)

The speaker addressed fall prevention generally and highlighted two Stanford programs that everyone should know about – Farewell to Falls and A Matter of Balance.

> View Ms. Catiggay's Slides

View "Fall Prevention (including Farewell to Falls and A Matter of Balance)" Webinar Recording

At the April 10, 2024 Palo Alto PD support group, the speaker was:

Gaurav Chattree, MD, movement disorder specialist at Stanford. 

He addressed the "phase 3" or "almost phase 3" research pipeline for disease-modification treatments and for symptomatic therapies.

> View Dr. Chattree's Slides

View "Updates in Therapeutics for Parkinson’s Disease" Webinar Recording

We had two speakers at the April 10, 2024 Palo Alto PD support group.

The first speaker was Jacque Perkins, MPH a research coordinator from UCSF. He spoke about the TOPAZ study, which you can participate in without leaving your home!

For more information, you may contact Jacque via email or at 415-317-5748.

The second speaker was Bart Narter, who has participated in 59 PD research studies since January 2012. He participated in the TOPAZ study. He describes the benefits to him of participating in research.

> View TOPAZ Study Slides

View "TOPAZ - Trial of Parkinson's and Zoledronic Acid" Webinar Recording

We had a great turnout for the March 2024 meeting.  The speaker and topics were:

Speaker:  

Selvi Paulraj, PhD, Stanford neuropsychologist

Topics:  

Neuropsychological Aspects of PD and 

Neuropsychological Evaluations Before DBS  (deep brain stimulation)

The speaker did not want to be recorded, but she shared her slides.

Meeting Materials:

> View Dr. Selvi Paulraj's presentation

At the February 23, 2024 Palo Alto PD support group, the speaker was:

Kathleen Poston, MD, MS, Director of Stanford's Movement Disorders Center

She discussed a new, proposed biological definition of PD.

Meeting Materials:

> View Dr. Poston's slides

View "PD and Dementia with Lewy Bodies: Biological definition" Webinar Recording

At the January 11, 2024 Palo Alto PD support group, the speaker was:

Jocelyn Jiao, MD, Stanford Movement Disorders Clinic and Stanford Palliative Care

She discussed the big picture about an individual's whole health and defined palliative care.

Meeting Materials:

> View Dr. Jiao's slides

View "What is palliative care:  Caring for the whole person" Webinar Recording

Chris Ritzo, RN, with Mission Hospice

Chris talked about how hospice care is provided and how it can benefit families coping with Parkinson's to enroll sooner, rather than later.

View "Hospice for Parkinson's Patients" Recording

Rudy Stoltzfus, RN, with Grace Community Home Health

Rudy talked about who qualifies for home health, how home health is provided, and how it can benefit people with Parkinson's and their caregivers.

View "Overview of Medicare's Home Health Benefit" Recording

Pablo O'Brien with South Laurel Group Professional Fiduciary explained fiduciary services.

View "What is a Fiduciary?" Recording

Stephanie Peters with enABLE Care Management told us about care management.

View "What is Care Management?" Recording

David Cohen with Exceptional Senior Placement shared what placement finders do.

View "Care Facility Placement Services" Recording

Laura Sigura with Seniors at Home offered tips on interviewing an agency for hiring in-home care, what aides can and can't do, and the advantages of hiring through an agency vs. hiring individual caregivers.

View "Hiring In-Home Care" Recording

At the regular, Wednesday, September 13th virtual support group meeting, we heard briefly from Megan Rao, MPH, with Stanford Health Care.  She gave an overview of Stanford's Neuroscience Wellness classes.

One of those classes is a PD-specific exercise class that is held virtually, Tuesdays and Thursdays, 2:30-3:30pm.  The instructor is Yue Whelchel.  At our regular September meeting, Ms. Whelchel led us in lots of exercises helpful to those with Parkinson's.  She began seated (in a chair without wheels) and then stood up, occasionally holding on to a sturdy chair.  She used small weights.  The class lasted about 45 minutes.  Check out the recording!

View "PD Exercise Class (Join in!)" Recording

Helen Bronte-Stewart, MD, movement disorder specialist, Stanford University.  

She discussed her research on adaptive DBS, which is also called "brain sensing DBS" or "closed loop DBS."

View "Brain Sensing and Adaptive DBS" Recording

The next two speakers were from Dr. Bronte-Stewart's lab at Stanford and described two studies. The SPRING study is recruiting participants who already have the Medtronic Percept PC DBS system.  (For more information about the SPRING study, contact the Bronte-Stewart Lab.) The QDG study is recruiting those with PD and healthy controls to validate a non-invasive device for the assessment of fine motor control.  (For more information about the QDG study, contact Laura Parisi at Stanford.) The speakers were:

Laura Parisi and Aarushi Negi, Bronte-Stewart Lab, Stanford University  

> View blog post about SPRING study

View "SPRING study and QDG study" Recording

The speaker noted that there are four spots left for local participants (with or without PD) for the upcoming "Connecting Through Art" virtual program at Stanford. (For more information about the CTA program, contact Alena Smith at Stanford.) The speaker was:

Alena Smith, Stanford Neurology

View "Connecting Through Art" Recording

At the March 15, 2023 Palo Alto PD support group, the speaker was:

Leila Montaser Kouhsari, MD, Stanford movement disorder specialist. 

She addressed the treatment of Parkinson's motor symptoms, and focuses on medication. 

View "Treatment  of Motor Symptoms in Parkinson's Disease" Webinar Recording

At the tail-end of the March 15, 2023 Palo Alto PD support group meeting, a Stanford study recruiting for Parkinson's Disease participants was described.   

Leila Montaser Kouhsari, MD talked about research that explores whether those with PD can learn new behavior. 

If you are interested in signing up, contact Stephanie Tran, research coordinator at Stanford, trans@stanford.edu. 

View "Stanford Research - Can those with PD learn new behavior?" Webinar Recording

At the tail-end of the March 15, 2023 Palo Alto PD support group meeting, a Stanford study recruiting for Parkinson's Disease (PD), progressive supranuclear palsy (PSP), and normal controls was described.   

Jiwon Yeon, PhD described research into "looking behavior" (or eye movements) in PD and normal controls. 

Leila Montaser Kouhsari, MD, one of investigators of Dr. Yeon's study, addressed a couple of related questions from the audience.

Visit the study webpage if you are interested in signing up.

If you have questions, contact Dr. Yeon at Stanford, jyeon@stanford.edu, or text 404-314-2333.

View "Stanford Research - Looking behavior in PD and PSP" Webinar Recording

At the regular February 8th virtual support group meeting, our guest speaker was:

Gaurav Chattree, MD, movement disorder specialist, Stanford.

He updated attendees about four PD treatments in the clinical study pipepline, and new-ish symptomatic therapies. He briefly addressed focused ultrasound and stem cell therapy for PD. Attendees asked questions about exercise, constipation, incontinence, and impulse control disorder.

Meeting Materials:

> View Dr. Chattree's slides

View "PD Treatment Updates in 2023" Webinar Recording

At the January 12th virtual support group meeting, our guest speaker was:

Margaret Ferris, MD, movement disorder specialist, Stanford.

She provided an overview of DBS (deep brain stimulation) and FUS (focused ultrasound) as treatments for Parkinson's.  And she compared these two treatments.

Meeting Materials:

> View Dr. Ferris's slides

View "Overview of DBS and FUS" Webinar Recording

At the regular, Wednesday, December 14th virtual support group meeting, we had the following speaker:

Mitch Miglis, MD, autonomic specialist, Stanford Neurology.
Topic:  Orthostatic Hypotension in PD

He described what causes the sign of orthostatic hypotension, how the sign manifests, and treatment (both pharmacological and non-pharmacological).  There were lots of good questions from attendees.

Dr. Miglis shared this "orthostatics log," for tracking blood pressure at home .  The basic measurements are taken lying flat and then after standing in place for 3 minutes.  Measurements should be taken at different times of day.

> Download Orthostatics log (Word document)

Meeting Materials:

> View "Orthostatic Hypotension in PD" slides

View "Orthostatic Hypotension and PD" Webinar Recording

At the regular, Wednesday, December 14th virtual support group meeting, we had the following speaker:

Bianca Palushaj, MD, neurology resident, Stanford Neurology.
Topic: Short Overview of Microbiome in PD.

Dr. Palushaj provided a short overview of the microbiome in Parkinson's disease. She is part of a team (working with Ami Bhatt, MD) conducting a study of the microbiome. Those with Parkinson's and "healthy controls" are invited to participate. To join the study, contact:

Gabriella Green, Stanford Microbiome Study, via email  or phone 910-467-9301.

Meeting Materials:

> View "Microbiome and PD" slides

View "Short Overview of Microbiome in PD" Recording

At the regular, Wednesday, December 14th virtual support group meeting, we had the following speaker:

Theresa Yao, SLP, speech/language pathologist, Stanford.
Topic: Swallowing Support Group, and Speech Assessment at SJSU

Ms. Yao spoke about a new "swallow support group" being started by Stanford as of January 2023.  The group will meet virtually on the second Thursday of each month, 4-5pm.  Visit the group's website.  View a flyer about the group:

> Visit Swallow Support Group Website

> View Swallow Support Group Flyer

Plus, Ms. Yao noted that San Jose State University SLP students will be offering a free assessment in the winter quarter 2023 to those with PD.  And the SLP students may be offering a SPEAK OUT virtual class for those with PD as of spring 2023.  If interested, contact the Kay Armstead Center for Communicative Disorders by email.

View "Swallowing Support Group" Recording

At the regular, Wednesday, October 12th virtual support group meeting, we had the following speaker:

Julie Muccini, OTR/L, occupational therapist, Stanford University.
Topic: Driving and Parkinson's

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 "Driving and Parkinson's" slides

View "Driving and Parkinson's" Webinar Recording

At the regular, Wednesday, October 12th virtual support group meeting, we had the following speaker:

Hannah O'Day, PhD, research bioengineer, Stanford University.
Topic: Research Update on Freezing of Gait in PD

She described a study underway at Stanford.

Meeting Materials:

> View "Research Update on Freezing of Gait in PD" slides

View "Research Update on Freezing of Gait in PD" 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

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 described this as the "best presentation on speech and swallowing problems" she has seen!  Denise's 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. 

> Email Dr. Tass's team

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 Dr. Chattree's slides

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.

> Live, online classes

> Videos

View "PD Exercise Fundamentals and Class (Join in!)" 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 Dr. Chattree's slides

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:

> Stanford Farewell to Falls Program

View Webinar Recording

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 "Alpha-synuclein as a therapeutic target for Parkinson’s disease: challenges and opportunities (Cutting edge research at Stanford)" 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 "Can Skin Cells Be a Biomarker and Lead to Development of a Drug Treatment?  (Cutting edge research at Stanford)" 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 first of two speakers was:

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)

View Webinar Recording

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

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