What’s New in Parkinson’s: January 2021

Photo courtesy of Linda Lee, Pass to Pass

Telehealth, forced exercise, Parkinson’s apps, gut bacteria research, hiking trips with llamas, and “wow moments” of hope: here are some of the most important articles, podcasts, research, opportunities, and living well stories happening now. 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

  • 61-year-old John Cullen tells US News and World Reports that exercise has transformed how he lives with Parkinson’s. Six months after beginning a new workout routine, he says, “I was able to walk backward. I felt like I could go up and down stairs better. Things were really rocking and rolling. I felt almost like I didn’t have it, even though I knew I had it. It was just that good.
  • Diagnosed with Young Onset Parkinson’s Disease (YOPD) at age 35, Mike Whitt at one point in his Parkinson’s journey was taking 40 pills a day to manage symptoms. Now, after deep brain stimulation (DBS), he is off all medication, “goes on bike rides and kicks a soccer ball around with the kids, activities that would have been ‘inconceivable’ a few years ago,” and is grateful that it has allowed him to “to do the things that I want to do with my life.
  • TikTok has helped pave the way to a better pill bottle for people living with Parkinson’s. After posting on the social media site videos and personal accounts of his experiences with Parkinson’s, including one when he demonstrated how tremors in his hands make opening pill bottles difficult, elite athlete Jimmy Choi saw a community come together to devise a solution.

PARKINSON’S SURVEYS, CLINICAL TRIALS, and volunteer opportunities

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

Featured image courtesy of Linda Lee, Pass to Pass

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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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