Parkinson's Disease and Movement Disorders Center News & Monthly Updates: June 2020
Clinic Update: We are continuing to offer tele-visits, and encourage you to keep your upcoming medical appointment if you have one scheduled. We have had a lot of success conducting visits over the phone and using video. At the same time, we are gradually increasing our in-person visits for those low-risk individuals who prefer to be seen in-person and for whom tele-visits cannot provide a suitable level of care. If you have specific concerns and feel that your care can no longer be delayed, please reach out to your provider. If you are scheduled for a tele-visit and prefer an in-person visit, or vice-versa, please reach out to your provider to discuss the most appropriate care setting.
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Virtual Support Group Schedule

General Parkinson's Disease Support Group 
Date: Wednesday, June 3rd and June 17th (1st and 3rd Wednesday of each month)
Time: 2:00 p.m. – 3:30 p.m. 

Parkinson’s & Women Online Support Group 
Date: Tuesday, June 9th (2nd Tuesday of each month) 
Time: 11:30 a.m. – 12:30 p.m. 

Care Partner Virtual Support Group 
Date: Tuesday, June 9th (2nd Tuesday of each month) 
Time: 3:30 p.m. – 4:30 p.m. 

Young Onset Virtual Parkinson’s Group 
Date: Wednesday, June 24th (4th Wednesday of each month) 
Time: 6:00 p.m. – 7:30 p.m. 


After completing the online consent form, an e-mail will be sent with information for how to join the group. If you have any questions about group offerings or how to register, please e-mail Erin Cecchi
Featured Fitness Class: Live Yoga For Parkinson’s 

Instructor: Paul Weitz 
Date: June 9th, 16th, 23rd, and 30th (2nd, 3rd, 4th, and 5th Tuesday)
Time: 2:00 p.m. – 3:00 p.m

To join this group with video & audio from a computer, tablet or smart phone, click "join a meeting" on Zoom's homepage  and type in Meeting I D: 827 7971 3113


To join the group via phone with audio only, dial 312-626-6799, and enter Meeting ID:  827 7971 3113
Save the Date

PD Symposium at Lake Forest Campus
Saturday July 12th
8:30 AM - 12:30 PM

The 10th Parkinson's Symposium will be offered virtually this year. This event is usually held in-person at Northwestern's Downtown Campus
Saturday October 10th
Time-TBD

To register for the symposiums, please call 877-926-4664.
Northwestern Medicine Parkinson’s Disease & Movement Disorders Center Genetic Studies

Research Study Title: Northwestern Movement Disorders Center Biorepository  
Clinical Trial Investigator: Tanya Simuni, MD
Clinical Trial Description: The Movement Disorders Center (MDC) Biorepository is a registry aimed to collect biologic and clinical information, such as blood and tissue samples, and family and medical histories from patients diagnosed with a movement disorder. The purpose of studying materials from the registry is to identify factors that either cause these neurologic conditions or increase one’s risk for developing them. Samples collected for this biorepository include a blood sample (or a saliva sample) and a skin biopsy. Participants may choose to donate one or both samples.

For more information contact: Alejandro Hernandez at alejandro.hernandez1@northwestern.edu

Research Study Title: Parkinson’s Progressive Marker’s Initiative (PPMI) 2.0
Funded by: Michael J. Fox Foundation for Parkinson’s Research
Clinical Trial Investigator: Tanya Simuni, MD
Clinical Trial Description: The purpose of this study is to obtain information from people with and without Parkinson disease (PD) so that researchers may better understand how Parkinson disease progresses, in order to inform better treatments. The information collected in this study is for research and not for clinical care. This study is an expansion of the PPMI 1.0 study that has been ongoing for nearly ten years. The information this study will collect includes, clinical information, brain imaging scans, samples of blood, urine, cerebral spinal fluid, skin biopsy information from digital applications (such as an application on a smart phone) and self-reported information from questionnaires that are complete online.

For more information contact: Max Galarce at max.glarace@northwestern.edu

Research Study Title: PD Gene ration (PD Gene): Mapping the Future of Parkinson’s Disease
Funded by: Parkinson’s Foundation
Clinical Trial Investigator: Tanya Simuni, MD
Clinical Trial Description: The purpose of this study is to evaluate how offering Clinical Laboratory Improvement Amendments (CLIA) certified genetic testing for PD genes to Patients with Parkinson’s disease impacts clinical care and potential enrollment in clinical trials. This study will be a longitudinal, multi-center study to evaluate how providing CLIA-certified genetic testing and genetic counseling by the Parkinson’s Foundation for PD-related genes impacts PWP’s lives, their clinical care, and knowledge of PD genetics. 

For more information contact: Max Galarce at max.glarace@northwestern.edu
During this challenging and often isolating time of social distancing, now more than ever we recognize the importance for people within the Parkinson’s community to stay active, connect with each other and receive support no matter their physical location.  
 
Visit  Parkinson.org/PDHealth   for a full list of events. Participants can  register  for virtual community engagement events of interest and put them on their calendar. 
 
  • Mindfulness Mondays: Start your week with calmness, as you take part in guided relaxation techniques to help boost brain power and reduce stress. Sign up here!
  • Expert Briefings Tuesdays: Taking place in home offices across the nation, we will host webinars about the PD topics that matter most to you. Sign up here and watch previous expert briefing webinars!
  • Wellness Wednesdays: Join us at noon for a Facebook Live event or a PD-related educational video that will highlight PD awareness, research or treatments. Join here and watch previous Wellness Wednesday videos!
  • Take Time Thursdays: Take time each Thursday when our local Chapters will host topics that matter most to you-from exercise, nutrition, speech, stress management, women and PD and more. Please see the list of Thursday's events here.
  • Fitness Fridays: A free, PD-tailored 10-part fitness series with instructor Joellyn Fox, DPT, from the Dan Aaron Parkinson’s Rehab Center, Penn Therapy & Fitness at Pennsylvania Hospital will feature a new focus every week, from balance to coordination, posture and more. Videos will be released weekly on Fridays through June 12th. Watch now!

Featured Offering : Take Time Thursday with Charlinda Brashear, Northwestern Medical Group

Please join Charlinda, clinical social worker, as she discusses The Importance of Practicing Gratitude in a Time of Crisis.

Date: Thursday, June 4, 2020 
Time: 12 p.m. PT / 1 p.m. MT / 2 p.m. CT / 3 p.m. ET (DURATION: 45 minutes) 

Take Time Thursdays is a virtual program, taking place live, using the online Zoom platform. Instructions on joining the webinar are provided after registering.

COVID-19 Patient Information and Recommendations  

  • General information and precautions related to COVID-19 can be found on the Foundation website here.  
  • Principales Preguntas y Respuestas Sobre el COVID-19 el Parkinson with Adolfo Ramirez, MD, University of Florida: https://www.parkinson.org/espanol/coronavirus. 
  • Article on COVID-19 and Parkinson's disease by Ray Chaudhuri, DSc, FRCP, MD, Medical Director at Kings College, Denmark Hill Campus and Kings College Hospital. This article was featured in the March 2020 edition of the journal, Kinetic: Practical Parkinson's Management, on pages 4-5.
Parkinson’s Foundation Consensus Statement on the Use of Medical Cannabis for Parkinson’s Disease

The primary goal of this statement is to provide guidance to both people with Parkinson’s and their physicians for the safe use of medical cannabis for PD. 

To read the full statement, click here .
Available Resources  

As a reminder,   the Foundation has a variety of resources available to support you and the PD community, including: 
 
Shirley Ryan AbilityLab Clinic Update

Shirley Ryan AbilityLab is offering individual physical, occupational, and speech therapies via tele-health. Services are being covered by nearly all insurances. This has proven to be incredibly beneficial and well received by many of our patients.

If you are interested in tele-health therapies to provide more individualized services, you will need an order from your doctor. Once you have the order, you can call 312-238-1000 to get scheduled. You do need to have access to an internet enabled device with a camera and a microphone.

Shirley Ryan AbilityLab ONLINE Parkinson’s Educational Series 

Free online educational series for people with Parkinson’s Disease and their care partners. 

Jennifer Goldman, MD, MS and a team of PD experts will lead an exciting and interactive educational and support group program covering an array of topics relevant to neuropsychiatric and non-motor issues in PD. Sessions will feature presentations from our Parkinson’s disease care team and guest experts in the field of Movement Disorders. 

This ten part series will offer monthly: 
  • Virtual “live” online webinar sessions on the first Saturday of each month 
  • Options to view the virtual “live” online webinar sessions on-demand after the “live” event 
  • Opportunities to view previously recorded sessions on-demand 
  • Interactive question and answer sessions for people with PD and care partners 
  • Opportunities to connect with others in the PD community 

The Parkinson Foundation has provided a generous grant for this educational series and we offer this invaluable program at no cost to attendees. 


To register please contact Doug at 312-238-591, via email at dmerkitch@sralab.org, or fill out the online registration form here .

Shirley Ryan AbilityLab At Home Workout: Parkinson’s Integrated Exercise Program

SRAlab fitness center has put out a series of home workouts and are releasing more weekly.

Webinar On-Demand
Overcoming Functional Movement Disorder: Sharing Progress and Hope

Hosted by Shirley Ryan AbilityLab and Northwestern Medicine, Dr. Kathrin LaFaver, Dr. Erica Sieg, and Donovan Long, watch this previously recorded webinar discussing functional movement disorders.

Chicago Movement Coalition (CMC)
The Chicago Movement Coalition (CMC) is an alliance of leaders from Northwestern and the Chicago community. CMC is a resource for Parkinson's education and Chicago-area PD events. Leaders of the coalition include people with Parkinson's and their care partners. The goal of the CMC is to raise awareness of PD and be a resource for PD needs in the community. 

Click here to learn more, and find PD educational and other events!
Make sure to check out other offerings!

PMD Alliance : Online programs, including support groups and informational talks, break down the twin barriers of isolation and distance. Through the power of connectivity, PMD will reach you in your home environment and shine a light on real-world strategies. With more than 100 movement disorder specialist partners across the country, this program brings together and puts forward experts you may never have a chance to see in person. Click here to see all PMD Alliance events.

The Parkinson’s Voice Project:   Providing a Loud Crowd daily session on the internet. If you have a Facebook account or will open one, you can watch the live presentations by clicking here and then clicking on the blue writing which says "Click here for Facebook LIVE sessions Monday-Friday10am”. If you do not have and do not want a Facebook profile, you can have the option of using the recorded sessions by clicking here: Speak Out! Home Practice Videos.

Davis Phinney Foundation:   The Davis Phinney Foundation has created the Live Well Webinar Series, which is presented by their partners Amneal and Kyowa Kirin. You can find topics previously covered as well as those planned for the future. In order to access these sessions, simply click on the title or titles that most interest you and then complete the form.  Click here to see the Live Well Webinars .

Michael J Fox Foundation:   On the third Thursday of every month at 12 p.m. ET, join our free live webinars to learn about various aspects of living with Parkinson's disease and our work to speed medical breakthroughs. Log on, listen to the expert discussion and submit your own questions to our panelists. For more information, click here: MJFF Webinars. Y ou can listen to their podcasts through their website or subscribe in iTunes or through your smartphone podcast app. 

Brian Grant Foundation: The Brian Grant Foundation offers expert Q&A briefings, virtual cooking classes, a virtual book club, online exercise videos, and more. To see a full list of events and offerings, click here .