"serving as a resource for individuals and their families affected by Parkinson's disease in the Carolinas, through education, community outreach and direct support"
December Newsletter - 2020
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Dear *{{First Name}}* ,
There are several events going on this month where the proceeds will benefit Parkinson Association of the Carolinas. While these events will be going on in person, COVID-19 guidelines (masks, social distancing, hand washing/hand sanitizing) will be in place. Join us for one, or all, of these FUNdraising events. We hope to see you there!
Festival of Wreaths
This Year Synergy Home Care and Elmcroft of Little Avenue are having their Festival of Wreaths event with proceeds benefitting Parkinson Association of the Carolinas.
We are so appreciative of their support.
Click here to see the flyer and mark your calendar for this fun event!
Dash ‘n Dine
Our Community Partners - Elmcroft, Aging Resources Network, All About Seniors Magazine, Bayada Home Health Care, Carepoint Home Care and Hospice & Palliative Care of Charlotte, are holding their annual Dash ‘n Dine with all proceeds benefitting Parkinson Association of the Carolinas. In the rush of getting ready for the holidays pick up a delicious dinner while also supporting our organization.
Click here to see the flyer for information on how to RSVP!
Festival of Trees
Join us at the annual Harbor Chase of Rock Hill Festival of Trees event! Bid on one of many custom decorated trees, think Tupperware Tree, Gardening Tree and Much more! All proceeds benefit Parkinson Association of the Carolinas!
Click here to see the flyer for more information!
Generosity looks different for everyone and #GivingTuesdayCLT is a celebration of generosity in all forms—whether it’s helping a neighbor, advocating for an issue, sharing a skill, or donating to a cause, every act of generosity counts. How will you show generosity on December 1 #GivingTuesdayCLT?
Visit this link to choose which way you'll do good!
Hear from our Executive Director Ann Marie here!
Save the date for our annual MoveIt! Walk in Myrtle Beach, SC on May 8, 2021 and again in Charlotte, NC on May 22, 2021!
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Earlier this year, we launched a Programs & Services Survey to gain feedback about our performance and learn more about the needs of our community members. We thank everyone for their participation, and we appreciate your time and input.
Based on your responses, we have identified some areas to focus on.
In the coming months, we will be working to:
Increase accessibility to our programs
Expand our support groups and exercise classes in underserved areas
Provide more information about pharmaceutical products and medical devices
Offer additional learning opportunities, resources, and support for caregivers
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.
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Recently donated items are available, first come first serve. Items include: 1 walker, 1 transfer wheelchair, 1 wheelchair, 1 toilet seat riser, and several books related to Parkinson's Disease please call
980-245-2786 or email pac@parkinsonassociation.org.
Let’s get through this together.
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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 webinars below for exclusive educational opportunities brought to you by the PAC team and our sponsors!
Managing the Return of Parkinson’s Symptoms With a Unique Treatment with Dr. Sanjay Iyer - PAC/ACORDA
December 3, 2020 at 2PM
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!
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News
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APDA Symptom Tracker Mobile App:
As we all know, everyone experiences Parkinson’s disease (PD) differently, and symptoms can vary greatly day by day. The more specific someone can be with their health care team about the types of symptoms they’re experiencing, and the timing of their medication, the better the doctor(s) can tailor a treatment plan specifically for each person. But it can be hard to remember how certain symptoms have or have not affected you since the last time you connected with your health care team, or if you missed a medication dose.
APDA is here to help. They created the APDA Symptom Tracker mobile app specifically for people with PD to help you significantly improve your ability to easily and accurately track your PD symptoms and medications, and relay that important information to members of your medical team; with the ultimate goal of receiving better, more personalized care. Some of you may already have been using the app, but now it is new and improved with expanded features, and they are very excited to announce that this app is now also available in Spanish!
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Tips for dealing with a Parkinson’s diagnosis:
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"When we reached out to Parkinson’s bloggers and campaigners around the world for their advice on dealing with a Parkinson’s diagnosis, they were only too happy to share their insights. From telling friends and family to adjusting the way you live, here are their top tips on dealing with this life-changing news."
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"What advice would you give to someone who has been recently diagnosed with Parkinson’s?
Debbie Shapiro, founder of Tikvah for Parkinson, Israel: “Whether it be Parkinson’s, or something else, I would tell that person to take their diagnosis as a wake-up call to make some lifestyle changes. Exercise, social interaction, healthy diet; they are important for everyone, but for a person with Parkinson’s, they are game changers.”
Continue Reading on Parkinson's Life
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Is a Vaccine for Parkinson's Disease Possible?:
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As the world awaits an effective vaccine for SARS-CoV2 (the virus that causes COVID-19), vaccines and vaccination are at the front and center of the news and in our minds.
A vaccine is a substance that is introduced into the body in order to stimulate the immune system to provide protection against a particular disease.
Did you know that many pharmaceutical companies are working on vaccinations as a treatment for Parkinson’s disease (PD)?
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It is important to note that while a vaccine is not imminent, each clinical trial and study that is underway is teaching us something new and important that will hopefully get us closer to a successful outcome. Even the projects that fail offer us substantial learnings that can be applied to future research efforts in this area.
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LATEST RESEARCH ON COVID-19 & PARKINSON’S DISEASE
As citizens of the world, we all continue to grapple with the COVID-19 pandemic. And as members of the Parkinson’s disease (PD) community, we continue to have specific concerns about COVID-19 and how it relates to PD.
There is so much information out there, some of it misinformation, so it is important to rely on credible, trusted sources. In this post, I will cover the latest information (as of the date this was published) that investigates the relationship between PD and COVID-19.
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Upcoming Events
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Featured Presenters:
Horacio Kaufmann, MD, FAAN
Patricio Millar Vernetti, MD
Mariella Graziano, BSc, PT
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Join the PAC team and sponsor ACORDA for
Managing the Return of Parkinson’s Symptoms With a Unique Treatment with Dr. Sanjay Iyer
December 3, 2020 at 2PM
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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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ADPA presents
Spotlight on Parkinson’s Disease: Keeping Your Mind and Body Healthy
Thursday, December 10, at 12PM
Featured Presenters:
David Kreitzman, MD
Cristina Colón-Semenza, PT, MPT, PhD
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You are invited to attend the 6th Annual (virtual) PD Loud & Proud Sing-Along on December 14th at 2:00PM!
For this sing-along, regular attendees will be presenting and would love an audience (and audience participation, if you would like!). The Zoom link to join is on the attached flyer.
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The Davis Phinney Foundation presents
Medications, Side Effects, and Parkinson’s
Thursday, December 17, at 3PM
Featured Presenters:
The eight members of the Davis Phinney Young Onset Parkinson's Disease Council
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The Micheal J.Fox Foundation presents
Calling All Care Partners: Managing Disease and Burnout in 2020
Thursday, December 17, at
12:00PM
Featured Presenters:
Foundation panelist and experts.
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Facebook Live Parkinson's Speech Exercises
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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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Programs
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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.
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.
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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.
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You're invited to consider completing an online survey designed to begin to understand some of the unmet challenges for people with Parkinson’s disease. Despite the continual growth of people diagnosed with young onset Parkinson’s disease (YOPD), research examining the burdensome non-motor features remains scarce. The research study is titled, “Apathy in Young Onset Parkinson’s Disease: The Mitigating Role of Employment and Meaning in Life.” We hope to identify potential relationships between apathy and other variables that might lead to new and innovative treatments.
To be eligible to participate in this study, participants need to have a clinical diagnosis of YOPD (prior to the age of 50) and be at least 18 years old. Participation in this study will require about 25-minutes of time and will not include any compensation. I am hoping to have all surveys completed by December 20, 2020
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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.
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Connect with us!
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Let's get social!
Are you a follower?
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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866.903.PARK (7275)
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