pd active: connecting and building pd communities › 2016 › 03 › pdanews2...george turner,...
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Dear PD Active Community,
By law, we are all due ‘accommodations’ for our disabilities, from employers, educational institutions, even from parking control officers. We accept (and expect) this as part of our PD deal. But sometimes the hardest accommodations to accept are the ones we must make for ourselves. How to accommodate this annoying tremor shaking my right hand as I try to type these words? Or how to accommodate the restlessness in my left leg, which makes walking and exercising so challenging?
The road to accommodation is paved by kindness, that we be kind to ourselves above all; if not now, WHEN?
V The PD Active Board of Directors Joan Bernstein (Emeritus), Paula Blasier, Mary Pat Boersma, Warren Brunetti,
Patrick Coffey, Herb Heinz, Judith Lubman, Stephen Tobriner, Gary Turchin, George Turner, & Ann VanSteenberg
PD Active: Connecting and building PD [email protected] • PD Active, P.O. Box 9246, Berkeley, CA 94709 • 510-479-6119
March 2016 newsletter: (click on a heading to go straight to the topic)
March PD Active Forum with Caroline Tanner, MD, page 2
Mercy Care & Retirement Center donation, page 3
Thank you Donna!; Appreciating Gary Turchin, page 4
Calendar adjustments; Partners in Parkinsons Event May 14th, page 5
Join the PD Active Team! - Moving Day, May 1st, page 6
UCSF Supportive Care Clinical Trial; Sad News - Mark S. Steiner, page 7
Thanks to our donors, page 8
Giving to PD Active, pages 9
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Another “Don’t Miss” PD Active Forum – Caroline M. Tanner, MD, PhD, FAAN
Saturday, April 2, 2016 from 10:30 a.m. - 12:00 p.m.
Berkeley Unitarian Fellowship Hall, 1924 Cedar Street (at Bonita), Berkeley
In 2015 Dr. Tanner was honored at a White House ceremony as a “Champion of Change.” For more than 25 years, her research and clinical practice has focused on understanding the causes of Parkinson’s disease and developing better treatments.
TOPIC - Learn the role evolving technologies can play in the management of your Parkinson’s disease today.
About Dr. Tanner:• Received the Movement Disorders Research Award from the American Academy of
Neurology in 2012• Director of the VA’s San Francisco Parkinson’s Disease Research, Education, and
Clinical Center• Professor of Neurology, UCSF Medical School• Board certified in neurology, completed a fellowship in clinical neuropharmacology,
and has a doctorate in environmental health sciences• Serves on national and international committees specific to movement disorders
and in academic research on Parkinson’s disease and dystonia
RESERVATIONS – JOIN US! We expect a full house and space is limited. To reserve your seat please email [email protected] today.
Watch for the emailed flyer for complete topic details
September 2016 ...The 4th World Parkinson Congress ... September 20-23, 2016 in Portland, OR
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= Community News & Information =
thank you!
PD Active Board President Mary Pat Boersma receiving the Pies for Parkinson’s donation from Janet Thompson, Mercy’s Marketing Director, with Paula Blasier.
left to right: Mary Pat Boersma, Janet Thompson, & Paula Blasier
Mercy Retirement & Care Center – A New Friend of PD Active
“Pies for Parkinson’s” - Mercy Retirement & Care Center’s new Thanksgiving event raised $275 for PD Active. Last month Board President Mary Pat Boersma and Board member Paula Blasier met with Janet Thompson, Mercy’s Marketing Director, to see the facilities and explore opportunities for outreach and collaboration.
The PD Active Board expresses its gratitude to Mercy for choosing PD Active as the beneficiary of their creative, alliterative event.
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You can get a free “Aware in Care” kit from the National Parkinson’s Foundation:
http://www.awareincare.org/
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Farewell, but not Good-bye! Appreciation for Gary Tuchin, Board Member & Newsletter Editor Emeritus
Gary Turchin, our capable and generous newsletter editor for so many years, has decided to leave the PD Active Board of Directors. He has contributed so much to the shape and tenor of PD Active, and to that of the newsletter, and I say goodbye to our working relationship with both sadness and great appreciation.
In addition to providing guidance, judgement, and discernement, Gary has written the opening paragraphs of the newsletter each month, bringing to this forum his warmth, humor, and intelligence, and the important gift of talking about sometimes painful truths with compassionate grace. He has also contributed poems to the PD Active newsletter, always relevant to being alive, and often addressing the conundrums presented by PD.
Thank you Gary for everything. Here’s hoping you will stay in touch and send us a poem sometimes.
Kindest regards,Diane Caudillo
Newsletter Builder
Thank You Donna Mickelson! – Our New Picnic CoordinatorDonna has volunteered to lead the charge for the 2016 Annual Picnic.
PD Active depends on volunteers like Donna to keep the PD Active community connected and our programs sustainable. How about you? Have an hour to staff our table at Moving Day or the Partners in Parkinson’s event? Help greet people at our Forum events? A special skill you want to offer?
For information on how you can help, please contact us at [email protected]
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Partners in Parkinsons - Save the date for this excellent free event!
Oakland Convention Center: 1001 Broadway, Oakland, CA 94607
Saturday,May142016•8:00a.m.-3:30p.m.•https://www.partnersinparkinsons.org
Partners in Parkinson’s comes to Oakland in May with a full day of educational seminars and panel discussions. On their website you can view a short video and hear from attendees about what they gained by attending a Partners in Parkinson’s event.
• The Many Faces of Parkinson’s Disease• Seeing a Movement Disorder Specialist: What to Know, Ask and Expect• Parkinson’s Research: The Road Ahead• Moderated Q&A on Morning Sessions• Closing Session: What’s Next?
In addition to the educational sessions outlined above, Partners in Parkinson’s will feature a resource fair, staffed and open throughout the day. Browse at your own pace as you connect with resources in your area including medical providers, allied care providers, exercise and activity groups, advocacy groups and more.
The event is free and breakfast and lunch will be provided to all registered attendees.Questions? Contact [email protected] or call 212-509-0995 ext. 330 for assistance. CLICK HERE for the website where you can register & get more information.
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= More Community News & Information =
Calendar adjustments
Dance: We will not have class on March 31.
If you would like to receive notifications about Dance for PD class, be sure to sign up at [email protected]
Salon will continue its every-other-month format, with a one-time change. Instead of being held on the 2nd Sunday as usual, this month Salon will be on March 6th, the first Sunday of the month.
Hula: There will be no classes on March 14, 28, and April 4th. Kumu will be in Hawaii.
PD Active Forum will return Saturday April 2nd.
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Have Fun – Do Good! Join the PD Active 2016 Team for Moving Day®!
The National Parkinson Foundation’s second annual Moving Day® San Francisco fundraising walk, is scheduled to return to Justin Herman Plaza across from the historic Ferry Building on Sunday, May 1, 2016.
Last year a bunch of us put together a PD Active team to participate in Moving Day®, A Walk for Parkinson’s. We had a great time and a lot of fun. We joined the demonstrations of stretching, dancing, yoga, and tai chi programs for people with PD. We met doctors, organizations and others who provide services for us. We went on the walk for PD around the waterfront and Ferry Building area, a beautiful and not too taxing stroll. We took turns staffing the PD Active tent.
Moving Day also provided an excellent opportunity for people to find out about PD Active. We had an information table and our own PD Active tent. People could come to either location and find out about PD Active. New people joined PD Active that day. Moving Day was a win-win event. PD Active helped to raise money for the National Parkinson Foundation. The event introduced people to PD Active. PD Active is applying to the National Parkinson Foundation for grants to expand the services that we offer.
Become a member of the PD Active team and have fun this year! Go to http://www3.parkinson.org/site/TR?fr_id=2460&pg=entry to join the team. To volunteer for 30 minutes of tent time email [email protected]
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UCSF’s Parkinson’s Disease Supportive Care Clinic Recruiting for Supportive Care Clinical Trial
UCSF’s new Parkinson’s Disease Supportive Care Clinic’s trial will study how supportive care affects outcomes in patients with PD. This is a 12 month, randomized clinical trial with a control group and a treatment group for 70 patients and their care partners.The new multidisciplinary clinic includes a neurologist/movement disorder specialist, a supportive/palliative care specialist, a clinical nurse, a social worker, and a chaplain. Patients may see all of the clinical team members, or spend more time with only a few members of the team.
-Inclusion criteria: PD for longer than 10 years, difficulty with one or more activities of daily living, over the age of 40, a care partner or caregiver, speaks English.
-Exclusion criteria: atypical Parkinsonism, illnesses requiring palliative care (like metastatic cancer), immediate and urgent palliative care needs, or already receiving palliative and/or hospice care.
For more information contact information: call Lorna Beccaria, RN, CCRC, Clinical Research Nurse at 415-353-9453 or email: [email protected]
Sad news about Mark Steve Steiner
Mark Steve Steiner, brother of PD Active member Eva Yarmo, passed away after 30 years with Parkinson's. All of us at PD Active offer condolences to Eva and her family.
Ring the bells that still can ring.Forget your perfect offering.There is a crack in everything.That’s how the light gets in.
Anthem, by Leonard Cohen
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Donors since last newsletter ...
Thank you!
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Jerry Bloom & Cynthia King - in memory John Lennie
Anthony Dailley - in honor of Lee Shapiro & yoga
Rosemary Fetis & Nancy Atlas
Mark Grace - in honor of Lee Shapiro & yoga
Janet Klusza - in honor of Lee Shapiro & yoga
Aubrey Labrie
Kenneth Laubenstein - in honor of Lee Shapiro & yoga
Mercy Retirement & Care Center
Charis Moore - in memory of John Hess
Overlook International Foundation - in honor of Stanley Lubman
Roger Polk
Linda Schacht - in honor of Stanley Lubman
Lee Shapiro - in honor of Amy Blasenheim & yoga
Lee Shapiro - in honor of John Argue & yoga
Gity Tabritztchi-Baxter - yoga
Stanley & Judith Lubman - in memory of Mark Steve Steiner (brother of Eva Yarmo)
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DONATENOW
Giving to PD Active
We rely on you – our generous PD Active members, your friends and families for our core financial support. It’s easier than ever to help.
How Do I Donate?You can make one time and/or recurring donations online or through the mail.
• MailMake checks payable to PD Active. Mail to PD Active, P.O. Box 9246, Berkeley, CA 94709
• Online
• Onourwebsite–pdactive.wordpress.com/donate
• ViaPayPalathttps://www.paypal.com/
For help setting up a recurring monthly donation via credit card, email Judith at [email protected] or call 510-479-6119
What/How Else Can I Donate?• Stockordonoradvisedfunds• PlannedGiving-PropertyorotherassetsthroughyourwillorestateplanQuestions? Contact Judith at [email protected]
• ShopthroughAmazonSmile!Seesmile.amazon.com for details
PD Active is a 501(c)3 non-profit organization. Contributions to PD Active are fully tax deductible as allowable by law. Consult your tax advisor or attorney.
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