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June 2021 Newsletter

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

MoveIt! Walks Raise Awareness & Support for 

Local NC & SC Carolina Communities

 
 

MoveIt! Walk Myrtle Beach Prize Winners

  • Top Fundraiser: John Champon
  • Team with the Most Walkers: Magic Mike

MoveIt! Walk Charlotte Prize Winners

  • Top Fundraiser: Jeff Head
  • Team with the Most Walkers: Team D         & the JCC Rock Steady Family
  • Team with the Most Spirit:                    Rooted Warriors

We sincerely thank all of the individuals and teams who participated in and/or supported this year's MoveIt! Walks!

We're almost halfway through 2021, and we're so excited for what this year has brought and for what is in store!

 

We are so grateful for everyone who participated in our 2021 MoveIt! Walks and helped us raise nearly $61,000 in support of PAC's cost free programs thus far! 

 

There's still time to donate toward these campaigns. You can give a gift between now and June 30th by visiting PAC's website at https://www.parkinsonassociation.org/donate-online/, and clicking on the "Donate" button, or click on the green "DONATE" button below. Please be sure to type "Walk MB" or "Walk CLT" in the Comments section.

DONATE

Join in on this Month's PAC Programs!

 

Wellness Wednesday

 

Our Wellness Wednesday program will continue on the third Wednesday of every month!

 

Join us Wednesday, June 16th at 3:30 P.M. for our upcoming webinar! This session will be led by PAC's Program Coordinator, Quinci Christian and guest yoga instructor. In honor of International Yoga Day on June 21st, our instructor will host a Mindfulness and Meditation Yoga session.

 

To sign up, click on the following link: REGISTER,

or click on the green REGISTER button below.

 

If prompted, enter the following information: 

Meeting ID: 834 8636 3101 | Pass Code: 690530

REGISTER
 

Educational Webinars

Vigeana Sanon, Pharm.D., Rph

Join Vigeana Sanon, Pharm.D., Rph and Dr. Shannon R. Blume on Thursday, June 10th at 2:00 P.M. for an educational webinar entitled,  "The Introduction to Parkinson’s Disease."

 

To register, click on the following link: REGISTER, or click on the green REGISTER button below.

 

If prompted, enter the Meeting ID: 814 8973 1113 | Pass Code: 538106

REGISTER

Dr. Shannon R. Blume

Parkinson's Community News

Rock Steady Boxing!

Many of you are familiar with the Rock Steady Boxing program available throughout the Carolinas, which has shown to improve the symptoms and progression of Parkinson's disease. This program has demonstrated phenomenal results in it's participants and continuously proves to be a valuable practice in fighting Parkinson's disease, as many exercise programs are!

 

This month, we give a special shoutout to the Rock Steady Boxing group in Hickory, NC, led by Rob Fisher. 

This is an amazing and passionate team which has received recognition from Muhammad Ali’s daughter, Laila Ali, who sent them over a signed pair of boxing gloves and the note below for all their hard work!

 

“To Rock Steady Boxing, thanks for all the amazing work you are doing to help folks fight Parkinson’s. I know my dad is smiling down from heaven!  Much Love!” -Laila Ali

 
 
 

Living Well with Parkinson's: Building Your Network

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A network? Really? I’m just about managing to hold myself together, never mind build a network. This is what I would have said to anyone who asked me about this topic 9 years ago. I was newly diagnosed, aged 38, had 2 young kids and my own business to run. I had just about got through the difficult task of telling people close to me that I had Parkinson’s disease. There was no way I was ready to share it with the rest of the world, never mind engage in networking.

When I was invited to speak on this topic at the WPC Virtual Conference this year, I realized how far I had come. I attended my first World Parkinson Congress in 2016 in Portland. From that moment, I knew that not only did I need to network for myself, but that I wanted to actively create and shape a wider network. Today, this network has become the backbone of both my own support system, as well as giving me purpose in helping others and advancing knowledge on Parkinson’s disease worldwide.

 

Continue Reading more from WPC

 
Helping Women with Parkinson’s Know They Are Not Alone
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‘Con P de Párkinson’ – a blog created by campaigners in Spain – has been illuminating the stories of women living with Parkinson’s disease. Its co-founder, Francisca Ruiz González, shares her experience of diagnosis and her mission to make other young women with the condition visible to the world.

 

 

I was diagnosed with Parkinson’s disease in 2012, at the age of 48. I noticed something was happening to my right arm – it stopped doing what I told it to do. It wouldn’t swing when I walked. No matter how much I asked my brain to move it, my arm would not obey. Even my handwriting was different.

 

Continue Reading on Parkinson's Life

 

 

Non-Motor Symptoms Determine Quality of Life After DBS

 

Non-motor symptoms are major determinants of quality of life (QOL) for people with Parkinson’s disease who have undergone deep brain stimulation, known as DBS, a new study reports.

“Postoperative QOL was associated with non-motor symptoms … rather than motor symptoms,” the researchers found, specifically noting that patients with worse impulsivity pre-surgery had a lower quality of life following the procedure than those without such issues.

 

Importantly, the findings also show that, three years after DBS, patients reported significant depression and problems with verbal fluency.

The study, “Neuropsychiatric Symptoms in Parkinson’s Disease After Subthalamic Nucleus Deep Brain Stimulation,” was published in Frontiers in Neurology.

 

Continue Reading On Parkinson's News Today

Upcoming Events

The Davis Phinney Foundation presents

 

"Grit: Passions, Perseverance, and Parkinson's"

 

Tuesday, June1st at 12:00 PM

Featured Presenters:

 

Angela Duckworth

 

*To register, please click the

highlighted "Grit: Passions, Perseverance, and Parkinson's"

 

MUSC Lunch and Learn presents

 

"How to Fight Parkinson's With Exercise"

 

Thursday, June 3rd, 2021 at 12:00PM

Featured Presenters:

 

Janis Newton
Director, MUSC Wellness Center

 

*To register, please click the

highlighted "How to Fight Parkinson's With Exercise"

 

Pacific Neuroscience Institute presents

 

"Everything Parkinson’s Webinar"

 

Monday, June 7th at 12:00 P.M.

*To register please click the highlighted "Everything Parkinson’s Webinar"

 

The Davis Phinney Foundation presents

 

"The Latest and Greatest on Boxing and Parkinson's"

 

Tuesday, June15th at 2:00 PM

Featured Presenters:

 

John Dean

 

Josefa Domingos

 

Sara Rigarre

 

*To register, please click the

highlighted "The Latest and Greatest on Boxing and Parkinson's"

 

The Davis Phinney Foundation presents webinars for

 

YOPD,

YOPD for Women, and 

Care Partners

 

* Dates for each vary. For more information or to register please click the highlighted "YOPD", "YOPD for Women" or "Care Partners"

 

The Michael J. Fox Foundation presents

 

"Deep Brain Stimulation: Is It Right for Me or My Loved One?"

 

Thursday, June 17th at

12:00 PM

 

 

*To register please click the highlighted "Deep Brain Stimulation: Is It Right for Me or My Loved One?"

Available Local Programs

Disclaimers!

 

Many meetings have been suspended until further notice, and 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 all programs especially exercise programs. 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

 

The PAC Virtual Support Group will continue every first Wednesday of the month at 2:00 P.M.

 

Our next Virtual Support Group will be July, 7th at 2:00 P.M.

 

Check our website for updates.


PAC assists 90+ support groups in NC and SC. Click here to view our Support Group list for a group near you.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. 

 

 

Exercise Opportunities

 

PAC will continue to offer Gentle Yoga online. Please check our website here for updates.


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.

 

Rock Steady 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

 

Additional ongoing programs are listed below. Note that some of these programs are not facilitated by Parkinson Association of the Carolinas (PAC) and are subject to change.

Please check the programs affiliated link for more information.

 
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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. Anyone from anywhere is welcome to join!

 

Dance and Sing for PD classes

are now being held online.

 

Check danceforparkinson.org or

click here for more information.

 

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The Caregiver TLC Research Program offers FREE ONLINE
support to caregivers in NC. Caregivers will complete
six weekly virtual Zoom sessions led by trained facilitators. This
workshop will teach coping skills to deal with stress, depression
and burden, and strategies to improve quality of life. 

 

Click the full flyer here or below the logo for more information about the involvement in with the program!

 

View Full Flyer Here

THRIVE: Parkinson's Online Community Exercise-Education-Support! Have a Parkinson's Specialist as your coach
and guide!! 

Click the full flyer here or below the logo for more information about the program!

 

Facebook Live Parkinson's Speech Exercises

Monday-Friday, 11:00 A.M.

Tuesday, 7:00 P.M.

 

More Information Here.

 

View Full Flyer

Allison Hingley, neurologically-specialized music therapist, is offering a new (free!) group music therapy program to address vocal quality improvement for people with PD. This will be weekly, starting June 10th.

Click the full flyer here or below the logo for more information about the program!

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


More Information Here.

 

 
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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.

Local Studies & Trials

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The goal of the study is to understand how restrictions from COVID-19 effected physical activity levels in those with Parkinson’s disease (PD). Physical activity has been known to improve many symptoms in patients with Parkinson's disease (PD). In this study you will participate in one (1) virtual meeting. In total, this study will require around 30 to 45 mins of your time.

You will be asked to answer surveys about your current physical activity level, cognitive abilities, and balance confidence. Following the questionnaires, you will be asked questions about how COVID 19 has affected your ability to participate in physical activity.

 

If you have any concerns about the study, you can contact:

PI: Jared W. Skinner, (828)-262-2512 or skinnerjw@appstate.edu

 
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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

 

The Social Communication and Neuroscience Lab at East Carolina University is looking for individuals diagnosed with Parkinson’s to participate in a online research survey. Participation involves completion of a survey that consists of five short questionnaires about mental health, demographic variables, and coping during the COVID-19 pandemic and takes about 15-20 minutes to complete.

The survey can be found here. 

 

For questions, contact Kathrin Rothermich at

252-744-2329 or rothermichk17@ecu.edu

How You Can Support PAC

Volunteer with PAC! 

 

For opportunities to assist our PAC team with projects relating to development, digital marketing and communications,  and community surveys, OR to serve as a Board Member, Committee Member, or PAC Ambassador, click on the "Learn More" button below, or contact Associate Director Lauren Tankersly at ltankersly@parkinsonassociation.org.  

 

LEARN MORE

Would you like to offer your services or insight in a different way? Share your feedback to help us improve PAC's programs and raise awareness about our organization.

 

We are looking for community members to provide complete surveys and share testimonies on PAC’s behalf. We’re welcoming program participants, care partners, and industry leaders to take just a few minutes to complete the survey below. Also, if you have just a bit more time, we would love to hear a testimony about PAC’s services.

 

If you or someone you know has been positively impacted by our educational webinars and programs, movement therapy classes, support groups, toll free resource line or even our regular communications, you can submit a written or video testimony to Lauren Tankersly at ltanekrsly@parkinsonassociation.org.

 

We appreciate your time and support!

TAKE THE SURVEY

Get Involved, and Make Your Mark!

It is our mission to empower individuals and families living in the Carolinas

who are affected by Parkinson’s disease through education, outreach and direct support. Therefore, all programs and services provided by Parkinson Association of the Carolinas (PAC) are at no cost to you. 

 

PAC is grateful to our amazing donors and community that makes what we do possible!

To donate to PAC and our mission, click the green "DONATE NOW!" button below,

or click the following highlighted link: "DONATE NOW!"

DONATE NOW!
 
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Stay Connected with PAC for the Latest News

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Are you a fan of PAC on Facebook? Do you follow us on Twitter? Stay informed and get the latest PD news and events. Click below on the social media outlets you already use and start getting social with PAC today!

 

 

Check out our NEW Instagram! @parkinsonscarolinas

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It is our mission to empower individuals and families living in the Carolinas who are affected by Parkinson’s disease through education, outreach and direct support. Therefore, all programs and services provided by Parkinson Association of the Carolinas (PAC) are at no cost to you. 

Donate Now!

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Call us toll-free

866.903.PARK (7275)

 

Our toll-free resource line is available Monday through Friday during normal business hours.

If we are unavailable at the time of your call please leave us a message.

 

Call today to speak to a PAC team member!

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