What’s New in Parkinson’s: February 2021

Neurologist

From the "Give a Dime for Parkinson's" campaign to adaptive DBS to an Off-Broadway production of Samuel Beckett’s "Endgame," this month has brought an array of Parkinson's news and initiatives. Check out some of the most important Parkinson's articles, podcasts, research, opportunities, and living well stories happening now, and let us know if we missed anything important. Happy reading!

PARKINSON’S ARTICLES AND PODCASTS

PARKINSON’S THERAPIES AND MEDICATIONS

PARKINSON’S LIVING WELL STORIES

  • Two New York actors with Parkinson’s undertake an act of bravery as their swan-song to the decades-long professional lives they’ve led. Watch this Off-Broadway production of Samuel Beckett’s comic masterpiece, "Endgame," the play he wrote as a metaphor for living with Parkinson’s after caring for his mother and her Parkinson's. Beckett wrote that “there’s nothing funnier than unhappiness,” and this movie proves it. Click here to watch the trailer.
  • Led by National Dance Company Wales (NDCWales), North Wales college will pilot a dance program for people living with Parkinson’s this spring. “Dancing has been shown to have a positive impact on people with Parkinson’s, through mobility, movement, and muscle memory. This is a brilliant pilot project that will help participants to express themselves and improve their health and wellbeing, and there is also the community and social aspect to it."
  • Parkinson’s advocacy groups are spearheading a “Red Letter Campaign,” in which people with Parkinson’s from across the country will be sending letters to the White House requesting the following three actions: to ban chemicals that are linked to Parkinson’s, including paraquat, core purifiers, and trichloroethylene; to ask that Medicare make its coverage of telemedicine permanent; and to ask the NIH to increase its funding tenfold. They will host a free, live event on March 16; you can register here. To learn more and get involved in the campaign, email info@endingpd.org. You can also email your Senators and Representative to ask them to make telehealth rules permanent so people living with Parkinson’s can have access to providers they otherwise might not be able to see in person by completing the form here.
  • Last weekend, Linda Olson spoke at The Victory Summit® Virtual Event for people newly diagnosed with Parkinson's. She blew everyone away with her story. If you saw it and want more, or you missed it and want to know what our staff has been talking about all week, you can read her book here.

PARKINSON’S SURVEYS, CLINICAL TRIALS, and volunteer opportunities

PAIRing Up - If you are a person with Parkinson's or a care partner to someone with Parkinson's, you are invited to participate in an online survey to address neuropsychiatric (cognition, depression, anxiety) concerns in Parkinson's. The survey aims to learn about the needs and priorities for clinical care, education, support, and research as related to neuropsychiatric symptoms. To learn more and participate, click here to download the flyer. 

The University of Oulu, along with collaborators from Aalborg University, Fraunhofer University, the University of Manchester, the University of Glasgow, the University of Lisbon, and the University of Melbourne, is conducting a survey for people with Parkinson's and Parkinson's care partners about self-care. Complete the survey here to share your self-care strategies and techniques. You can also review ideas submitted by others and add them to your own self-care toolbox.

Looking for a once-in-a-lifetime adventure? Pass to Pass, a nonprofit dedicated to raising Parkinson’s awareness while supporting hikers living with Parkinson's, offers multi-day hiking trips (with llamas!) on the Pacific Crest Trail in both Washington and Oregon. Participants are being recruited now for these summer 2021 events.  For more details and information, visit www.PasstoPass.org or contact Bill Meyer at 509-991-1212 or spokanebill@gmail.com.

Parkinson's Progression Markers Initiative (PPMI) Screen Survey - The Michael J. Fox Foundation

Home-based Exercise and Cognitive Behavior Therapy - University of Alabama in Huntsville

Speech and Telemedicine Study – The Purdue Motor Speech Lab

Home Based Tele-exercise Study for People with Chronic Neurological Impairments - Burke Neurological Institute

Parkinson's and Drooling - European Parkinson’s Disease Association (EPDA)

Parkinson’s and Service Dogs – University of Groningen, Netherlands

Neurology Study Interest Registry – University of Rochester

Park Test – University of Rochester

Project Euphonia – LSVT Global and Project Euphonia

BouNDless – Phase 3 trial to investigate the efficacy, safety, and tolerability of ND0612, a continuous subcutaneous levodopa/carbidopa delivery system in comparison to oral levodopa/carbidopa in people with Parkinson’s experiencing motor fluctuations

WANT MORE PRACTICAL ARTICLES LIKE THIS?

Much more can be found in our Every Victory Counts® manual. It’s packed with up-to-date information about everything Parkinson’s, plus an expanded worksheets and resources section to help you put what you’ve learned into action. Request your free copy of the Every Victory Counts manual by clicking the button below.

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Thank you to our 2021 Peak Partners,  Adamas, Amneal, Kyowa Kirin, and Sunovion, for helping us make printing, distributing, and shipping the Every Victory Counts manual possible.

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