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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
     Local Programs...
 **
 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: 
                                          https://us02web.zoom.us/j/86552060873?pwd=RTJMN0gwREdNQ0pRd3JhZjJBejZlZz09


                  Continue to be Safe and Well!
               Take good care!!!!
               Best to all of you and your families!!!!

                                          myra
If you have questions, contact me at smhirsch35@comcast.net 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: 

                                      https://us02web.zoom.us/j/86555425947?pwd=VCtuelJoMjRGOTFFcjlmZytURG1Udz09
                                    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:  
                             
                          https://us02web.zoom.us/j/87635794600?pwd=NVFQRDJaS3ZaYWd0Ly84WnRPYnZxQT09

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
                             exercise at: 
                                          https://us02web.zoom.us/j/86552060873?pwd=RTJMN0gwREdNQ0pRd3JhZjJBejZlZz09


 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  lorikldtc@aol.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
                             DISORDER ALLIANCE
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
Webinars  https://www.apdaparkinson.org/webinar/?utm_source=google&utm_medium=cpc&gclid=EAIaIQobChMI6piI2Pyk6gIVuwiICR0u6QcCEAAYASADEgJA3fD_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:
                                https://secure3.convio.net/prkorg/site/Ecommerce;jsessionid=00000000.app30120b?store_id=4003                    
     **  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  
                              https://www.michaeljfox.org/webinars    https://www.michaeljfox.org/books-resources 

 
**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:

 https://blog.lsvtglobal.com/what-are-lsvt-loud-and-lsvt-big-introduction-to-lsvt-therapies-for-parkinsons-disease-and-other-conditions-january-2020/
 https://blog.lsvtglobal.com/public-webinars/ 

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
 
                                                               
                                      RESEARCH OPPORTUNITIES
                        
                 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, ruth_schneider@urmc.rochester.edu and Ray Dorsey, MD ( (585) 275-0663 ray.dorsey@chet.rochester.edu
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..

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