August 2018 NEWSLETTER & CALENDAR
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Upcoming Forum - Next Generation Deep Brain Stimulation
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Our next Forum speaker, Coralie de Hemptinne, will be presenting on the clinical trials being conducted by the Starr Lab at UCSF.
Currently, Coralie works as an associate researcher at the
Starr Lab in the Department of Neurological
surgery at UCSF. The aim of her research is to understand the pathophysiology underlying motor and non-motor symptoms in Parkinson’s disease
patients, and use pathological signals to inform new therapies for the disease. Together with her colleagues at the Starr Lab, she has helped to pioneer the development and implementation of the first closed-loop algorithms to trigger stimulation based on cortical biomarker detection for Parkinson's.
Deep brain stimulation (DBS) is a common treatment for movement disorders that consists in delivering continuous electrical stimulation in deep brain structures. Although increasingly used, DBS has several limitations. Namely, existing DBS devices continuously stimulate their target structures regardless of
patient's symptoms, resulting in habituation (less efficacy),
stimulation induced adverse effects, and short battery life
. The goal of UCSF's trials is to improve DBS therapy by developing smart DBS paradigms able to automatically adjust stimulation parameters based on the patient’s symptoms.
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Date: Saturday, September 8th
Time: 10:30 a.m. - 12:30 p.m.
1606 Bonita Ave, Berkeley, CA 94709
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Come Picnic in the Park - Friends, Food, Fun
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Come be in great company and enjoy good food at PD Active's annual picnic potluck. Bring a dish to share (with a serving utensil) and, if you like, also bring something to throw on the grill. Friends and family are welcome. PD Active will provide the beverages, tableware and grill fixings.
Date: Sunday, September 23rd
Time: 12:30 to 3:30 p.m.
near 1245 Walnut Street, Berkeley, CA 94709
Note: Bring a lawn chair if you prefer a seat with a back.
*Photo: Lincoln Pain and Lee Shapiro
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Forum on Medications with Dr. Rima S. Ash on November 10, 2018
Dessert Party and Mini-Info Fair on January 12, 2019
Forum with Author of the Parkinson's Primer, John Vine on February 9, 2019
Forum on the Gut and PD with Dr. Ethan Brown on April 13, 2019
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Seeking All Cyclists: Tour de Fox Wine Country, August 25th
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Join Board Member Chad Zucker and PD Active's first ever Tour de Fox team for the upcoming ride in
Santa Rosa. Riders of any experience level welcome to join the 10.7-mile ride.
Date: Saturday, August 25, 2018
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Update: Parkinson’s Peer Mentoring Pilot
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The results are in! A hearty thanks to all participants in the first round of PD Active’s Mentoring Pilot Program, which drew to a close
in June. In early July, program coordinators Karen Garrison and John Argue collected feedback forms from participants and convened meetings of mentors and mentees to spur discussion of ways to improve the program. The upshot:
- Most respondents expressed enthusiasm.
- All advised keeping the same basic structure.
- The overall advice was to continue to make the mentoring process fun and to ground it in a message of hope.
- Several noted that the personal connection it provided made a big difference in whether a newcomer uses available materials, tries out classes, and connects with others.
What next? This fall, PD Active plans to welcome new applicants to the program, with a few improvements. Guidebooks and other materials will be available via the internet, making them more user-friendly. The support system for mentors will be strengthened. Keep an eye on this newsletter for more info.
We will also focus on how best to help other groups start PD mentoring programs, through steps like making a kit of guidebooks and other materials available. The Parkinson’s Network of Mount Diablo has already expressed interest.
*Photo: Karen Garrison and John Argue
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PWR!
Moves
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and Chair Yoga -- Thank You Murthy, Welcome Petra
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PD Active has been most fortunate to have had the dedicated instructor, Murthy Jarugumili, PWR!®
(Parkinson's Wellness Recovery) movement and Chair Yoga (for those who prefer not to get down on the floor) for the last two years. We were aware of the benefits both programs and started the search for the right teacher. Carol Fisher, who teaches in Walnut Creek, urged us to meet her assistant, Murthy. We knew immediately that he was the person we needed.
We are very grateful to Murthy for establishing the first PWR!® class in our immediate area and for being caring and thoughtful while he expanded everyone's ability and flexibility in both classes. We knew that Murthy might one day decide to return with his wife, Veena, to India to enable them to take care of their parents and we regret to advise you that they are indeed leaving; July 17th was his last day.
Murthy kept looking for a replacement and for the last months he has
been co-teaching with Petra Fibrichova who had been one of his fellow students in the Niroga Yoga Therapy Training Program. Last January PD Active sent Petra to Arizona to be trained and certified as a PWR! instructor. Petra has now become the lead instructor for our two classes. She will be assisted by Lauren Banister who is now completing
her Niroga training.
We wish to thank Murthy for his devotion to his teaching and we look forward to having Petra step into his barefoot steps. Murthy recently wrote to his students: "Thank you so much for the opportunity you have given me over the last couple of years to be there in front of you every week. I can never forget that privilege and I have enjoyed every bit of it."
*Photo: Petra Fibrichova and Murthy
Jarugumili
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Linda Ronstadt - Upcoming Talk in Marin
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Linda Ronstadt will be speaking about both her career and Parkinson's on September 15th at Dominican University in San Rafael.
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UCSF Care Partners Series
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The UCSF series for care partners continues. Aaron Daley, Center Manager for UCSF's Parkinson's Disease Clinic and Research Center, recently conducted a session on hospitalization and has the following sessions scheduled:
August 23 - Relationships and Intimacy with PD
September 27 - Medicare/Medi-Cal and Home Care Concerns
Both are on the 4th Thursday of the month, 3:15 - 4:45 p.m., in the regular meeting room, Classroom C of the North Berkeley Senior Center. If you are a care partner and wish to attend, advise Joyce Sakai at
jk_sakai@yahoo.com
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Ward Joseph Stothers - July 11, 1945 to March 16, 2018
John Hammerman - November 12, 1935 to March 26, 2018
Paul Foster -
February 27, 1938 to July 3, 2018
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Donations made at Anna Rabkin's May Reading
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Many thanks to Anna Rabkin for hosting a second reading of her
memoir and directing the proceeds to PD Active a second time as well. We are very appreciative for the support.
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PD Active is a 501(c)(3) organization. Contributions are tax deductible.
We rely on you, our generous PD Active members, and your friends and family members, for our core financial support. It's easier than ever to help:
- To donate by credit card
- To donate by postal mail: PD Active, P.O. Box 9246, Berkeley, CA 94709
- To donate by PayPal
- Recurring credit card donations
- Stock or Donor Advised Funds
- Planned Giving - Property or other assets through your will or estate plan
- Automobile
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Calendar for August 2018
The calendar includes classes initiated with financial support from PD Active.
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PD Active Activities, Descriptions & Locations
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Local Classes for People with PD
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www.pdactive.org - (510) 479-6119 - info@pdactive.org
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