Fifty-eight women were surveyed after attending the Women & PD: What’s New? symposium in October at the Redwood Shores Library in Redwood City. The event featured ten of the top Bay Area researchers and clinicians helping women who have Parkinson’s disease.
Some comments and evaluations regarding the event from 25 women may help those planning a similar event in their area.
How did you like the symposium?
52 % gave it an excellent
32% gave it very good
Which was the most interesting topic?
42.86% chose new research as the most interesting
28.57% chose treatments for Parkinson’s disease as the most interesting
19.05% liked clinical trials best
New research at the Women & PD: What’s New? symposium included:
- Dr. Julie Andersen’s work with lithium
- Dr. Kathleen Poston’s clinical trials (including lab manager Taylor Hendershott)
- Dr. Karl Heilbron’s gender-based research using data from 23andMe
- A questions/answers panel including Dr. Jill Ostrem, UCSF, referencing her research on deep brain stimulation.
- Dr. Melanie Brandabur, Ultragenx Pharmaceuticals, spoke on new medications
- Randy Hoffman, speech language pathologist from Palo Alto Speech Therapy and Parkinson’s Institute led an exercise for speech
- Karen Merchant, RN, CNRN, clinic nurse at UCSF, talked about patient questions
- Dr. Daniel Zwilling, Circuit Therapeutics, discussed research on brain exercises
- Theresa Najjar, Synaptic Physical Therapy, included exercise tips.
What changes would most improve future symposiums?
- Better access to public transportation
- A place to eat lunch outside
- A balance of research presentation and practical help for PD patients
- Speakers who speak in layman’s terms
- More time for Q&A, fewer panel members so more time for each
- How to exercise on one’s own
- New exercise classes in the area
- Coping strategies
- More on topics about women’s specific issues
- Safety in terms of care and autonomy
- Medical advocacy
- Death with dignity/exit strategies
- How about digital support?
- Information on global studies like cell replacement in Sweden and England
- Insurance for research participation
- Discuss organizing something like a PWR! Gym.
- Perhaps some women would like to tell of their personal meds and activities
What topics would you like to learn about at our next conference?
- Trending research on problems specific to women
- New meds
- How to help caregivers with coping skills, communication changes, and action plans before we need them.
- A discussion on medications, side effects
- What PD expertise should we expect from our neurologist
- How to improve your life with PD
- Natural remedies supplements
- Role of marijuana in symptom relief
- Deep Brain Stimulation
- An exercise panel including Rock Steady Boxing, Dancing, Big, Weight Lifting
- Research – what is new?
- Alpha-synuclein protein aggregates
- self healing, self actualizing exercise
What did you like best about Women & PD: What’s New?
- It was well organized, upbeat, and demonstrated the ability to find experts in the field who were willing to present, even on a Saturday! The venue was beautiful and the area surroundings lovely providing the opportunity to walk and enjoy nature and fresh air.
- When Dr. Heilbron told us he was changing the direction of his research.
- Meeting other women with PD
- The hula dance
- The panel discussion
- Just being with so many women who are coping with PD
The response from these women indicates that there are many topics involving Parkinson’s disease that could draw an enthusiastic audience and an overflowing attendance list. All that is needed is a venue, a program, some speakers, and you…
About Parkinson’s Women Support: The mission of Parkinson’s Women Support is to offer moral support, encouragement and camaraderie for women who are Parkinson’s disease patients. Check out our Facebook page: https://www.facebook.com/parkinsonswomen
The meeting space was provided as a community service by the City of Redwood City. The City neither sponsored nor endorsed this event nor the presenting individual or organizations.