Reminders & Updates for Upcoming Zoom Meetings, Support Groups, & Research Opportunities
From the the Parkinson's & Movement Disorder Alliance:
Hi My Very Special Friends,
Hope things are going along for everyone... staying healthy and as content as possible.
Below you will find info on zoom meetings, classes, and other interesting info to check out. Hope you are
able take part in some of the events. Note: new items added will be preceded by two asterisks (**).
Fortunately there is great support out there for patients with PD and their families. I have included info to check out from
the major organizations: American Parkinson Disease Association, Dance for PD, Davis Phinney Foundation, Lee Silverman Voice Treatment Global ( LSVT-Global) Michael J Fox Foundation, Parkinson Foundation and Parkinson & Movement Disease Alliance as well as the Veteran's Administration from San Francisco.. all in addition to the valuable information you receive from your local doctors. When you find a few minutes... take time to check out the sites that interest you.
** Before moving on... take a moment to check out this short concert.... click here: https://youtu.be/LpAKcQufacc Enjoy!!!
... on with the information
** Join us Wednesday, July 1st at 11AM when Dr. Jill Farmer, MDS from Global Neuroscience and Robert Wood Johnson Hospital will be speaking on Hallucinations and Delusions - Non Motor Symptoms of Parkinson's Disease Click here to join us: https://us02web.zoom.us/j/87635794600?pwd=NVFQRDJaS3ZaYWd0Ly84WnRPYnZxQT09
**Join us Thursday, July 9th, 11:30 AM, Exercise With Debbie Drzik, Physical Therapist from Strive, Join the meeting at:
Continue to be Safe and Well!
Take good care!!!!
Best to all of you and your families!!!!
If you have questions, contact me at firstname.lastname@example.org or 609-304-5761.PD UPDATES
** SCHEDULED ZOOM MEETINGS FROM PSD ALLIANCE & LOCAL GROUPS
Monday, June 29th, 12 noon, Smart Phone Training ( lets get some good tips) ,
click https://www.pmdalliance.org/events-2020-summary then
scroll down to SMART PHONE TRAINING AND CLICK ON IT TO REGISTER.
Monday, June 29th, 2 PM , Judith Sach's Zoom for Qigong and Pranayama Breathing through Penn's
Parkinson and Movement Disorder Center Sign on at:
, Meeting ID: 865 5542 5947 , Password: 906423
Monday, June 29th, 3 PM, More than Motor Symptoms - Hallucinations and Delusions , click on
https://www.pmdalliance.org/events-2020-summary scroll down to Empowered Live Stream
SpotLight (More than Motor symptoms- Hallucinations and Delusions) and click on it to
register for More than Motor symptoms- Hallucinations and Delusions
Wednesday, July 1st, 11 AM, Dr. Jill Farmer, MDS, from Global Neuroscience and Robert Wood Johnson
Hospital will be speaking on Hallucinations and Delusions - Non Motor Symptoms of
Parkinson's Disease Click here to join us:
Wednesday, July 1st, 3PM, Wednesday, Five Wishes,Communication of Your Personal, Emotional and
Spiritual Wishes with Paul Malley, Click on https://www.pmdalliance.org/events-2020-summary
scroll down to Five Wishes and click on it to register.
Thursday, July 2nd, 1-2. A very special MOVEMENT AND MOTIVATION - SUPPORT STACEY MACALUSO
AS SHE WORKS FOR CERTIFICATION OF THE PROGRAM TO BECOME AN AUTHENTIC
DANCE FOR PD CLASS! PLEASE SAVE THIS TIME SO YOU CAN SUPPORT BOTH SHE
AND THE PROGRAM AS SHE WILL BE OBSERVED BY THE NATIONAL DIRECTOR OF
DANCE FOR PD. THE ZOOM SITE WILL FOLLOW IN THE FUTURE.
Tuesday, July 7th, 12 noon, Avoid Chaos through Advanced Planning with Kathleen Flamma, elder Care
Attorney, Click on https://www.pmdalliance.org/events-2020-summary scroll down to Avoid Chaos
through Advanced Planing and Click to register.
Thursday, July 9th, 11:30 AM, Exercise With Debbie Drzik, Physical Therapist from Strive, Join the group to
Monday, July 13th, 3 PM, Leaving a Legacy, Estate Planning with Debra Curry, Director of Investment
Stragegies, Yosemite Capital Management, Click on
https://www.pmdalliance.org/events-2020- summary and scroll down to Leaving a Legacy,Estate
Planning and Click to register.
Froday, July 17th, 3 PM, Neuroplastic Effects of Exercise with Dr. Giselle Petzinger, Click on
https://www.pmdalliance.org/events-2020- summary and scroll down to Neuro Plastic Effects of
Exercise and click to register.
Tuesday, July 21st, 3 PM, Solving Bladder, Bowel and Sexual Health Issues, Click
on https://www.pmdalliance.org/events-2020- summary and scroll down to solving Bladder,
Bowel and Sexual Health Issues and click to register.
Thursday, July 23rd, 3 PM , Add on Treatment for "Off" Periods, Click
on https://www.pmdalliance.org/events-2020- summary and scroll down to Empowered Live
Stream SpotLight - Add on Treatment for "Off "Periods and click to register.
Monday, July 27th, 3 PM , Understand Parkinson's through Neuropathology with Harry Vinters, Click
on https://www.pmdalliance.org/events-2020- summary and scroll down to Understanding
Parkinson's through Neuropathology and click to register.
Friday, July 31st, 3 PM, Interdisciplinary Care and Telehealth from Shirley Ryan Ability Lab, Click
on https://www.pmdalliance.org/events-2020- summary and scroll down to Empowered Live
Stream SpotLight Interdisciplinary Care and Telehealth and click to register.
SCHEDULED SUPPORT GROUPS VIA ZOOM...
WITH CORLYN HULLFISH FROM COOPER Men’s Group - third Monday of the month at 2:
Woman’s Group -the first Monday of the month at 2:30
Care Partners Group on the second Friday at 1:00.
Contact Corlynn at 856-968-8581 or hullfish-corlynn@CooperHealth.edu in advance and she will send you
the sign on information.
** WITH LORI KATZ FROM PENN
Monday, July 13th - 11 AM , Philadelphia Support Group for Women with Parkinson's Disease . Dr. Jill Farmer, MDS from Global Neuroscience and Robert Wood Johnson Hospital will be speaking on the Cogwheel of Cognition. To sign up contact Lori at 609-636-3473 or email her at email@example.com
** WITH LANCE WILSON FROM JEFFERSON
Wednesday July 8th , 3-4 PM, with Josie Etienne, MSN, RN speaking on Navigating Your Hospital Stay
click on the Link: https://us02web.zoom.us/j/81477917824, Meeting ID: 814 7791 7824 Call-In #: 646-876-9923. For further information contact Lance Wilson at 215-955-8257 or www.Lance.Wilson@Jefferson.edu.
WITH ANISSA MITCHELL, SOCIAL WORKER AT PARKINSON & MOVEMENT
Tuesdays- 12:30 -General Support Group- go to PMDAlliance.org /events and click on - https://www.pmdalliance.org/events/resilience-online-support-group-general-public-2020-06-09/
Thursdays - 4:30 - Care Partner Support Group https://www.pmdalliance.org/events/resilience-online-support-group-care-partners-2020-06-11/
Fridays - 1:30-2:30 Support Group for Loved Ones In A Facility-https://www.pmdalliance.org/events/resilience-online-individuals-2020-06-12/
( note...these sites are for this week...they may change each week)
CAFE CONNECTIONS VIA ZOOM -Second Thursday of each month - a social gathering for people affected by memory challenges and their caregivers. For further information contact Reva Farenbach-Brateman of Jewish Family and Children's Services at 856-424-1333-1184. ( open to the public)
ZOOM MEETINGS AND VALUABLE INFO AVAILABLE
AT YOUR LEISURE
**SPECIAL take sometime for a very special interview of Bas Bloem interviewing Connie Carpenter Phinney and Davis Phiney... it is special!!! It is the latest one in this group of interviews completed in connection with the excellent book Ending Parkinson's Disease . Click here to find the talk... along with other talks on the book. https://endingpd.org/live
** Davis Phinney Foundation https://www.davisphinneyfoundation.org/resources/ - This will lead you to blogs, exercise videos, podcast library, Video library, webinars,printable guides, worksheets and downloads, and research
** American Parkinson's Disease Association - Check out these sites: : https://www.apdaparkinson.org/resources-support/download-publications/?utm_source=google&utm_medium=cpc&gclid=EAIaIQobChMI6piI2Pyk6gIVuwiICR0u6QcCEAAYASACEgJrpfD_BwE
** Check out a recent,, very thorough webinar with Daniel Weintraub, MD from Penn at: http://www.aoic.net/APDA/APDA20165arc/
**PARKINSON'S FOUNDATION MATERIALS**
** Parkinson's Foundation current schedule of zoom meetings - https://www.parkinson.org/get-involved/events/PD-Health-at-Home
** Valuable publications to order from Parkinson's Foundation:
** Webinars: https://www.parkinson.org/Living-with-Parkinsons/Resources-and-Support/PD-ExpertBriefings-Webinars
** MICHAEL J FOX FOUNDATION MATERIALS: https://www.michaeljfox.org/ask-md
**Webinars available from the VA in San Francisco https://www.parkinsons.va.gov/sanfrancisco/vets.asp
click on the site to see the number of webinars available on varied topics for folks with PD.
**DANCE FOR PD WITH DAVID LEVENTHAL....
Check out archived classes here... they are a treat to watch!!! Click here: https://danceforparkinsons.org/resources/dance-at-home#archive
**LSVT- GLOBAL INFORMATION- That is Lee Silverman Voice Treatment for Parkinson's
Patients - Special training provided by speech therapists, physical therapists and
occupational therapists. The programs provide valuable training for both moving about
and for speaking. Check out these two sites for further information:
2020 Virtual Care Partner Summit | Cumbre Para Cuidadores. took place on Saturday, May 16th, 1,136 individuals across the world participated . 69 participants viewed the event live in Spanish. With a variety of topics from our expert panelists such as cognitive changes, mental health, the importance of self-care and practical planning, the Summit reached care partners like you far and wide. . To access the archived summit, click here.
New Book out on PD --- Ending Parkinson’s Disease – by Ray Dorsey, MD Michael Okun, MD, Todd Sherer , PhD, and Bastiaan R. Bloem MD PhD. The book reviews the history of PD and shares info how we can all work towards ending this disease. Great read! Available through Amazon. The authors have all been on zoom meetings sharing ideas within the book. NOTE: ALL PROCEEDS FROM THE BOOK ARE BEING DONATED TO THE PARKINSON’S CAUSE!!! for further information click on: https://redcap.urmc.rochester.edu/redcap/surveys/index.php?s=NA3XJ4RHHC
New Info from Dr. Jill Farmer: Check it out at: https://www.youtube.com/watch?v=XKclkkTe33U PARKINSON & MOVEMENT DISORDER ALLIANCE MEETINGS ON YOUTUBE. If you have missed any… here they all are… check them out…on many very important issues: https://www.youtube.com/channel/UCEQdttXzS7r1KQb8V7WPTiw/videos?view=0&sort=dd&shelf_id=1
NEW MEDICATION BOOKLET FROM PARKINSON'S FOUNDATION . Check it out : https://www.parkinson.org/pd-library/books/medications. Call to order it at 1-800-473-4636
MICHAEL J FOX FOUNDATION MATERIALS FOR NEWLY DIAGNOSED Check it out here: Print it up if you wish. https://www.michaeljfox.org/sites/default/files/media/document/Guide%20for%20newly%20diagnosed_5.18.20.pdf
Do Consider these... to help us move closer to better treatments and a cure!!!
Rare Patient Voice, LLC an organization that does research is interested in folks joining to share info for their studies. Often there is compensation provided.
Contact them at; https://www.rarepatientvoice.com/sign-up
Join NEUROLOGY STUDY INTEREST REGISTRY 2.0 through the University of Rochester Ruth Schneider, MD ( (585) 273-1856, firstname.lastname@example.org and Ray Dorsey, MD ( (585) 275-0663 email@example.com
The PARK web-based system enables the measurement of Parkinson's disease symptoms for anyone, anywhere – via webcam. Your recorded voice and motor tasks are analyzed to detect fluctuations in symptoms. By participating, you consent to share your videos for research purposes. This research is being conducted by the ROC HCI Lab and the Center for Health + Technology at the University of Rochester. For further information go to: https://parktest.net/Join Fox Insight- join the 48,441 presently participating. It is a research study that everyone with PD and those wishing to help can take part in via the web. It could transform the search for better treatments. You will be contacted every three months to answer questions via the web. Please check it out at: foxinsight.michaeljfox.org.
IMPORTANT: DO YOU HAVE AN AWARE AND CARE KIT providing you with valuable information for hospital stays? If not, this is the time to order one without charge. Find out further information and order it now at: Parkinson.org/awareincare OR CALL 1-800-473-4636
**Due to Covid -19, mailing charges ($8.50) will be tacked on after SEPTEMBER 1ST..