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"serving as a resource for individuals and their families affected by Parkinson's disease in the Carolinas, through education, community outreach and direct support"

October Newsletter - 2020

Dear Friends,

 

The PAC team has been diligently working to bring you new programs and resources every week in October!

 

In addition to Gentle Yoga via Zoom (Tuesdays-Thursdays) our wonderful yoga instructor Aminta St.Onge will continue Gentle Yoga in person at Southpark Mall Saturdays at 10AM.

The October dates are the 10th, 24th and 31st!

 

PWR! Moves with Susan Wiseman with be available via Zoom October 13th, 2020 at 10AM and in person at Southpark Mall October 27, 2020 at 10AM.

Details and more information will be made available here.

 

PAC will continue our VIRTUAL SUPPORT GROUP October 7, 2020 at 2PM.

Join us and guest speaker Amanda Barclay with Align Speech Therapy and Consulting!

Register for the Virtual Support Group here.

 

If you missed our annual Caring for Parkinson's, Caring for You Symposium

you can watch it all on the PAC YouTube Channel. 

 

We will be offering educational webinars almost every week this month, all of which are listed below and updated on our website regularly.

To ensure you receive all information about upcoming events keep up with us on social media and keep an eye on email updates!

Details and more information will be made available here.
 If you are seeking information or have specific needs, please feel free to reach out to us by calling

980-245-2786 or emailing pac@parkinsonassociation.org. Let’s get through this together.

 

FIND OUT MORE


        News

Voting in the 2020 elections:

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The 2020 elections are quickly approaching, below are some of the important dates to make sure your vote counts!

Oct. 15: Early voting begins (strongly encouraged)

Oct. 27: Absentee ballot requests (“vote by mail”) must be received by the county board of elections office by 5p.m.

Oct. 31: Early voting ends

Nov. 3: Election Day and in-person voting

Nov. 3: Absentee ballots must be received by the county board of elections by 5p.m. - it must be signed and have one witness. Absentee ballots received after 5 p.m. on Election Day will be timely only if they are received by mail no later than 5 p.m. on the third day following the date of the election, and postmarked on or before Election Day.

Important Registration Information:

-First time voters must complete and submit this form at least 25 days prior to the election

-If you aren't sure if you are registered to vote, visit the North Carolina State Board of Elections website to ensure you’re in the system and that your information is current.

-If you are a NC DMV customer, you can register to vote or update your voter registration through the “myNCDMV” app (click here for more information).

-If you have moved recently, or since the last time you voted, update your registration to reflect your current address.

-All registered voters may request absentee ballots for the November 2020 general election. To request an absentee ballot, complete and submit this form.

APDA: Inflammation & Parkinson's Disease

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Does inflammation play a role in Parkinson’s disease (PD)? It’s a question we get asked here at the American Parkinson Disease Association (APDA), and it’s a question some of our APDA-funded researchers are currently exploring.

The more we can learn about the connection between inflammation and the brain, and how that may correlate to PD, the better. For decades it has been understood that inflammatory changes occur in the brains of patients with PD, but only in the last few years has inflammation been viewed as part of the cause of the progressive nature of the disease and not just a result of the disease.  This interesting new research could eventually lead to treatments to reduce inflammation and/or minimize its impact.

APDA has several useful resources to help you learn more:

Inflammation and PD Overview:  In this entry from APDA’s A Closer Look blog, Dr. Rebecca Gilbert provides a helpful overview of this topic and also addresses the inflammation in the gut and how that plays a role in PD as well.

Two recent APDA-funded researchers have been investigating inflammation:

·   Dr. Edward Griffin: Dr. Griffin explores the role of T cells in the inflammatory processes of PD and whether preventing T cells from entering the brain affects neurodegeneration in a rat model of disease.

·  Dr. Brian Daniels: Dr. Daniels is looking at receptor interacting protein kinases (RIPKs) which are signaling molecules with important functions in promoting inflammation. RIPK inhibitors are showing promise in clinical trials for other neurodegenerative diseases and Dr. Daniels’ studies will hopefully bring us nearer to trying these inhibitors in PD as well.

 

Ask the expert: How can clinical trials “slow, stop and reverse” Parkinson’s?

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What are clinical trials, why are they so important ­– and what does taking part involve? We talk to Dr Simon Stott and Helen Matthews from The Cure Parkinson’s Trust about how clinical trials help researchers better understand Parkinson’s disease and what potential participants need to know

Helen Matthews, deputy CEO of The Cure Parkinson’s Trust: Simply, we won’t find a cure without running clinical trials to test new approaches. We can’t find a cure without the thousands of Parkinson’s volunteers who so generously put themselves forward to participate and support research.

Continue Reading.

New tool could support “faster diagnosis” of Parkinson’s disease psychosis

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A new screening tool has been developed to support the early diagnosis of Parkinson’s disease psychosis – a symptom of the condition that is often misdiagnosed.

Continue Reading


     Upcoming Events

Taking Charge of PD

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UNC Movement Disorders Center is launching a new 6 week virtual, live-interactive group program specifically for those who have been diagnosed with Parkinson’s in about the last 1-2 years.

The registration deadline is next TODAY, October 1st.

 

View the full flyer here.

 

Register Here.

PAC Virtual Support Group

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Join the PAC team and guest speaker Amanda Barclay with Align Speech Therapy and Consulting 

 

October 7, 2020 at 2PM

Register Here.

All future virtual support groups, facilitated by PAC, will continue on the first Wednesday of the month at 2PM.

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The Davis Phinney Foundation presents

 

Parkinson's Medication Management for Motor Symptoms

 

Wednesday, October 7, at 4PM

Featured Presenters:

 

Dr. Aaron Haug

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Duke-CZI Neurodegeneration Challenge Network’s Bench to Bedside Virtual Speaker Series

Thursdays, October 8th-29th, 3:00pm

 

Register Here

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Women and PD: Closing the Gender Gap :

Women diagnosed with Parkinson’s are invited to join Parkinson’s Foundation and the PF Center of Excellence at MUSC to learn about gender-specific care and considerations for optimal health and well-being.

October 10, 2020 at 9AM-12PM

 

Register Here

 

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Full Flyer Here.

Taking Charge of PD:

6-week virtual group program for people 
who are newly diagnosed with Parkinson's.

 

When:
Mondays
Oct. 12 - Nov. 16
4:00-5:30PM

For questions:


Jessica Shurer, MSW, LCSW
jshurer@neurology.unc.edu
919-843-1657

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Join the PAC team and sponsor Supernus (formerly US World Meds) for more information about Apokyn!

 

October 14, 2020 at 2PM 

 

Register Here

Featured Presenters:

 

Dr. Sanjay Iyer

 

Charles Manning 

 

Patient advocates Mr. and Mrs. Possenti 

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The Micheal J.Fox Foundation presents What to Watch This Election Season: A Roll Call of Parkinson’s Policy Priorities

 

October 15, 2020 at 12PM

 

Featured Presenters: 

 

Dave Iverson

 

NPR Senior Editor Ron Elving

 

MJFF Policy SVP Ted Thompson 

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Join the PAC team and sponsor Lundbeck for the Dizziness and Parkinson's Disease webinar!

 

October 21, 2020 at 2PM 

 

Register Here

Featured Presenters:

 

Dr. Isaacson and patient advocate Gail

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Annual Caregivers Summit conference, geared towards family caregivers of people with chronic diseases, will be online for 2020. 

October 22, 2020

 

Register Here

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Parkinson Foundation presents 

Young Onset Parkinson's Disease (YOPD) Work it Out: Managing Parkinson’s in the Workplace

 

October 27, 2020 1:00PM

Featured Presenters:

 

Miriam Rafferty, PT, DPT, PhD

Bradley McDaniels, PhD, CRC

Special Guest
Kelly Weinschreider

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Join the PAC team and sponsor Acadia for the Parkinson’s Disease: More than Motor Symptoms webinar!

 

October 28, 2020 at 6:30PM

 

Register Here

Featured Presenters:

 

Dr. Kathleen Woschkolup

Poised For Parkinson's

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Full Flyer Here.

North Carolina Coastal Area course:

Mondays & Thursdays, 10:30am-12:15pm

September 21 — November 19

To see if this course is appropriate for you, please contact the instructor: Jim Paisner More info: www.thepoiseproject.org/events/2020/nccoastal-pfp-course

South Carolina Coastal Area course:

Mondays & Thursdays, 2:30pm-4:15pm

October 8 — December 10

To see if this course is appropriate for you, please contact the instructor: Petrea Warneck More info: www.thepoiseproject.org/events/2020/sccoastal-pfp-course

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Get Loud Stay Loud!

Support for daily speech/voice practice. 

More Information Here.

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Rock Steady Boxing Headquarters is now offering
classes online via YouTube!


More Information Here.

 

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Dance and Sing for PD classes are now online.

 

Check danceforparkinson.org or more information here!


For those of you in Charlotte who have attended our
Dance for Parkinson’s class with Gretchen Jax,
click here to see her most recently recorded class.

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Now offering online Pilates classes!

Check poewellnesssolutions.com

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Explore worldpdcoalition.org for articles,webinars, and more!

More Information Here.


             Programs 

Disclaimers

 

Many meetings have been suspended until further notice, others have pivoted to virtual meetings. Similarly, many classes or facilities are closed out of an abundance of caution for public safety.

 

Please refer to the highlighted links for contact information and updates regarding availability.

 

We ask that you practice caution when participating in exercise opportunities.

Talk to your doctor about what program would be best for you, stay hydrated, exercise in a safe location, move at your own pace and preferably with a partner either with a caregiver or video exercise with a friend!

Support Groups


PAC assists 90+ support groups in NC and SC. Click here to view our Support Group list for a group near you. If you have questions about a specific group please contact the Support Group leader. 

 

 

The PAC Virtual Support Group will continue every first Wednesday of the month at 2PM.

 

Next Virtual Support Group is October 7, 2020 at 2PM with guest speaker Amanda Barclay with Align Speech Therapy and Consulting.

 

Register Here

Exercise
Opportunities
Find your way to Move It! Exercise has been proven to slow the progression of the disease. Click here to view the most current list of exercise classes throughout NC and SC.

 

RockSteady Boxing: streaming on YouTube

Dance for PD & Sing for PD: streaming here

Pilates for PD: streaming here

Invigorate Physical Therapy: www.invigoratept.com

LSVT -Speech Therapy: www.lsvtglobal.com

 

PAC will continue to offer Gentle Yoga, PWR! Moves and Dance for Parkinson's both online and in-person.

Please check our website for updated schedules and registration. 

 

        Research Opportunities

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Dr. Vanessa Hinson, Director of the Parkinson’s Foundation Center

of Excellence at MUSC, recently spoke to the attendees at a support

group meeting about two ongoing trials in the Charleston area that require minimal or no visit to a medical facility. 

 

The TOPAZ Study is a fracture prevention trial where the medication

will be administered during a one-time, 45-minute visit to your home. 

The ROPAD trial is an observational (no treatment) genetic study conducted during a single visit to the “little green house”, the MUSC Movement Disorders research site away from the hospital. These are two important trials and offer two ways you can help to further

our knowledge of PD, with easy participation. Please contact Tim at sheehant@musc.edu for more information. 

You do not have to be an MUSC patient to participate!

 

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LSVT Global and CurePSP are partnering with Google for new study called Project Euphonia. Project Euphonia is looking for volunteers with moderate to severe speech disorders associated with Parkinson’s (or other Parkinsonism-related diagnoses), to participate in this new study involving recording spoken phrases to help improve automatic speech recognition software (e.g. phones, computers, devices).

If you are interested in learning more about Project Euphonia, visit this webpage. Please contact project.euphonia@lsvtglobal.com with any questions.

 

View the full flyer here


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