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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"

January Newsletter - 2021

 

Dear *{{First Name}}* ,

 

First, the PAC team would like to thank you for your continued support during 2020. One of the

most challenging years many of us have endured thus far. We want to take a moment to express

our gratitude to each of you, without your continued support we would not be able to

reach or exceed our mission of bringing each of you new opportunities.

We are excited for what 2021 will bring and the new opportunities we will bring to you!

 

 

Save the date OR start FUNdraising today!

 MoveIt! Walk in Myrtle Beach, SC on May 8, 2021

https://give.parkinsonassociation.org/moveitwalkmyrtlebeach2021

MoveIt! Walk in Charlotte, NC on May 22, 2021

https://give.parkinsonassociation.org/moveitwalkcharlotte2021

 

Register today, get started fundraising and creating teams, and we will announce the winners of our early registration prizes on March 17, 2020!

 

 

March 16, 2021at 3:30 PM

Ann Marie Worman, Executive Director of Parkinson Association of the Carolinas (PAC), will be joining Council on Aging in Union County for a virtual presentation to discuss PAC programs and a new wellness webinar series beginning in March for caregivers. PAC empowers people with Parkinson’s and their caregivers through education, outreach, and direct support.  

Call 704-292-1797 to register for the Zoom link

 

_________________

 

We will continue to prioritize the needs of our Parkinson's community, and we will keep building upon our programs with commitment and creativity. Of course, we will do this while keeping a pulse on any COVID-19 restrictions and following health guidelines. It is our pleasure to deliver meaningful services, and we look forward to broadening our reach and growing our impact. 

 

Let’s start this year together!

 

 

Sponsored Webinars

We are extremely grateful to all of our sponsors for their continuous support in bringing you more educational opportunities at no cost to you! Please register for the webinars below for exclusive educational opportunities brought to you by the PAC team and our sponsors!

We are confirming details for two educational webinars in January sponsored by AbbVie and Adamas Pharmaceuticals!

 

Information will be updated as it becomes available, and can be found on our website or by clicking the "More Information" button below.

For information on our sponsors and subsequent webinars click the more information button below. Please note there is no cost to participate in these webinars, and all information provided is a paid advertisement by the sponsoring company and is not an endorsement by Parkinson Association of the Carolinas of the product or service. As with any treatment option or medication, please consult your physician.

We hope to see you there!

More Information
 


 

        News

 

An Inside Look at Parkinson's Disease Care Partners

Being a care partner for someone with Parkinson’s disease (PD) can be a difficult, but potentially very rewarding role. Making it even more challenging is the fact that the role is assigned without consent of the care partner, without any training and without the option of refusal. Care partners often lack confidence in their caregiving skills and are very unsure about whether they are performing their responsibilities adequately.

 

Dr. Kevin Klos would like to change that.

Dr. Klos is a movement disorders physician in Tulsa, OK where he has close ties to the APDA Oklahoma Chapter.  He has 20 years of experience taking care of people with PD and educating families, and has a particular interest in understanding the challenges of caregiving in PD. This is informed by the fact that he is also a care partner for his mother, Judy, who has PD. He is committed to helping his fellow caregivers with education and support to guide them on their journey with their loved one.  His main message is that care partners, despite all their misgivings, generally do an excellent job. I sat down with Dr. Klos for a conversation about caregiving.

Continue Reading more from APDA

 

6 New Year's Resolutions from the Parkinson's Community

 
 

After a crazy year in which everything that could go wrong did go wrong, all of us are looking forward to new beginnings, new healing, and new reasons to get excited and feel alive again. Although many of us have suffered a great deal and experienced many losses that will not soon be forgotten, we must remember that after a season of pruning there is greater flourishing.

 

Two things I’ve learned since living with Parkinson’s disease are acceptance and gratitude. The only thing we can count on in life is change, and this year has proven to be more unpredictable than any other time in our lives. Because of this, I am grateful for even the smallest of blessings.

Continue Reading on Parkinson's Life

 

 

World’s First Human CDNF Clinical Trial for Parkinson’s Disease

 

Funded by the EU Horizon 2020 research and innovation programme, the four-year TreatER project, which is now coming to a close, has united 11 public and private sector partners from five European countries to help develop a better treatment for Parkinson’s disease.

 

 

The project’s focus has been to conduct the world’s first in-human clinical study to administer the protein CDNF (cerebral dopamine neurotrophic factor) to people with Parkinson’s disease. The protein is administered using a neurosurgically implanted drug delivery system – which helps control the rate at which a drug is released and where it is released.

Continue Reading.On Parkinson's Life

 


 
 

     Upcoming Events

 

View Full Flyer Here

A Unique New Live Online Group Class from The Poise Project!

 

For people living with Parkinson's and their Care Partners!

 

 

Starting in the South Carolina Coastal Area in January!

 

Mondays & Thursdays, 2:00pm-3:45pm,

January 18 through

March 18, 2021

 
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World Parkinson Coalition presents 

WPC Dual Language Webinar: Deep Brain Stimulation - Part II

 

Thursday, January 21, at 1PM

Featured Presenters:

 

Not listed for this event

 
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The Micheal J.Fox Foundation presents

Night Fight with Parkinson’s: Acting Out Dreams, Insomnia and Other Sleep Issues


 

Thursday, January 21, at

12:00PM

 

 

Featured Presenters: 

 

Foundation panelist and experts.

 
 
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World Parkinson Coalition presents 

Wellness: Approaches Beyond Medication

 

Wednesday, December 9, at 3PM

Featured Presenters:

 

Julie Carter, RN, MN, ANP, Professor Emerita, Oregon Health & Science University

 

Silke Cresswell, MD, FRCPC, University of British Columbia

 

Lissa Kapust*, LICSW, Beth Israel Deaconesss Medical Center

 
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The Davis Phinney Foundation presents

 

Live Well TODAY Series

 

YOPD Council Series

 

Health Disparities and Parkinson's Series

 

YOPD Women's Series

Dates and times vary for each series. Check the links provided or the Davis Phinney website for updates.

 

Facebook Live Parkinson's Speech Exercises

Monday-Friday at 11AM

Tuesday at 7PM

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.

 

Our next Virtual Support Group will be January 6, 2020 at 2PM.

 

Check our website for updates.

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, and Dance for Parkinson's online.

Please check our website for updates.

 

 

        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

 

You're invited to participate in a study examining the positive and negative effects of living with Parkinson’s Disease during COVID-19.  Anyone who is above 18 years of age, is mentally competent, and is diagnosed with Parkinson’s disease is eligible to participate. 

 

Participation in this study will help improve our knowledge of how Parkinson’s disease affects individuals, which can ultimately inform ways to help people adjust to their disease and have an optimal quality of life.     

Participation includes filling out this approximately 10-minute online survey:

 

Take the survey here

 
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Shop PAC's Amazon Smile Charity List 

 


 

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866.903.PARK (7275)

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Consider selecting Parkinson Association of the Carolinas as your nonprofit on AmazonSmile and Amazon will donate a portion of your purchase to PAC.

Click here to get started!

 

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