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
- Studies continue to show the close connection between gut health and brain health. A new study published in the journal Metabolites found that Parkinson's impacts gut bacteria’s ability to break down fat, making it more difficult to regulate bile acid production. Disruptions in bile acid production, therefore, may be a potential indicator of Parkinson's, and treatments that target the microbiome and bile acids may help delay Parkinson’s progression.
- A new second opinion system, based on AI-assisted video analysis, has been invented to help medical professionals make accurate Parkinson's diagnoses, distinguish between stages of Parkinson's, adjust treatments, and evaluate a person with Parkinson's for deep brain stimulation surgery. Because it uses video recordings, the diagnostic process is quick, noninvasive, and comfortable for people being assessed, and it has the ability to detect very specific features of Parkinson's that are not visible to the naked eye.
- "If we want to cure Parkinson's, first we need to understand the function of alpha-synuclein." Dr. Giuliana Fusco, Research Fellow at St John's College, University of Cambridge, and lead author of a study recently published in Nature Communications, explains how her team uncovered new evidence about this function. Using synthetic models to mimic brain cell membranes, the researchers found that alpha-synuclein clings onto the inner face of brain cells' plasma membranes. They believe this discovery and further research into alpha-synuclein's function in the brain will help scientists "tackle the origins of Parkinson's."
- A new Apple smartwatch app called "Motor Fluctuations Monitor for Parkinson's Disease" can help track the progression of Parkinson's by monitoring movements characteristic of tremors around the clock. Researchers hope the technology will help doctors tailor treatment plans and medication doses to meet individual needs.
- A study led by the National Institutes of Health (NIH) that identified five genes that may play a critical role in Lewy body dementia supported the disease’s ties to Parkinson’s and also suggested that people with Lewy body dementia may share similar genetic profiles to those with Alzheimer’s.
- A study of pelvic floor health among women with Parkinson's has revealed a key gap in care of women with Parkinson's. The report explains that urinary dysfunction and constipation, both of which are manifestations of pelvic floor dysfunction, are common concerns that negatively impact the quality of life for women living with Parkinson's, and that women with Parkinson's self-reported urinary symptoms to a greater extent than those without Parkinson's.
- On a 2 Mikes Parkinson's Podcast episode this month, Bill Bucklew, who raised Parkinson’s awareness with a 2500-mile walk across the US and set a record for the fastest walk across the country, talks about family, work, philosophy, and inspiration.
- In this Parkinson's Foundation podcast episode, Dr. Gregory Pontone, MD, explains how some Parkinson's medications can cause impulse control disorders (ICDs), as well as how to recognize and communicate about ICDs if you experience them.
- On the Trembling EMT Podcast, listen to the story of how a baking enthusiast living with YOPD is "shaking and baking" his way through a variety of cookbooks.
PARKINSON’S THERAPIES AND MEDICATIONS
- In a review of 12 years' clinical experience, researchers reported that Neupro patches (rotigotine), which are placed on the skin and release the compound rotigotine into the body, can greatly reduce Parkinson's motor and non-motor symptoms. Rotigotine mimics the activity of dopamine, and when administered through the Neupro patch, has consistently been found to reduce dyskinesias, early-morning OFF periods, sleep disturbances, and Parkinson's-related pain (particularly pain at night or during OFF episodes).
- This month, surgeons in Detroit became the first in the US to implant the newest deep brain stimulation (DBS) system — Boston Scientific’s Vercise Genus — in a person with Parkinson’s. The device is approved for stimulation of both sides of the subthalamic nucleus and the internal globus pallidus, brain regions that play key roles in motor function.
- In other DBS news, a two-part clinic trial now underway in Italy and Poland is evaluating the safety, tolerability, and potential effectiveness of adaptive deep brain stimulation (DBS) delivered through Newronika's AlphaDBS system. Researchers will also be studying AlphaDBS's impacts on Parkinson's motor symptoms, dyskinesia, and OFF times.
- The US Food and Drug Administration (FDA) has approved GOCOVRI® (amantadine) extended-release tablets for people with Parkinson’s. Manufactured by Adamas Pharmaceuticals, GOCOVRI is approved as an adjunctive treatment to levodopa/carbidopa in people with Parkinson's who experience OFF episodes.
- Using data from the US and Denmark from a period of more than 20 years, a team led by researchers at the University of Iowa has found that a drug commonly used for an enlarged prostate condition is associated with lower risk of developing Parkinson's. The team found that men taking terazosin were between 12% and 37% less likely to develop Parkinson's during the follow-up period than men taking tamsulosin, another drug for an enlarged prostate. The drug's ability to protect against Parkinson's may be related to its cellular energy production, the researchers believe.
- In the Journal of Parkinson's Disease, researchers reported that their survey in Germany found that more than 8% of people with Parkinson’s are using cannabis products to alleviate symptoms, and more than half of those experienced beneficial clinical effects. The study, which assessed people's perceptions of medicinal cannabis and how often it is being used, also found that while the Parkinson's community has high interest in medical cannabis, knowledge about different types of products was limited; only 9% were aware of the difference between THC (tetrahydrocannabinol, the main psychoactive compound of cannabis) and CBD (pure cannabidiol, derived directly from hemp plants).
- To accelerate the development and validation of new therapeutic candidates for Parkinson’s and other diseases, the Sheffield Institute for Translational Neuroscience, (SITraN) has formed a partnership with Verge Genomics. This partnership will combine the expertise and technology of academia and the pharmaceutical industry to advance Parkinson's treatments and therapies.
- An MR-guided focused ultrasound platform called Exablate 4000 (Exablate Neuro) has been approved in China to treat essential tremor and tremors caused by Parkinson’s. Because the technique requires no surgical incisions or anesthesia, it is expected to carry a lower risk than deep brain stimulation. The technology has received marketing approval from the US Food and Drug Administration (FDA), as well as from regulatory agencies in Argentina, Australia, Canada, Chile, Europe, Israel, Japan, Kazakhstan, Korea, Russia, Taiwan, and Turkey.
- Dosing has begun in a Phase 1 placebo-controlled and double-blinded clinical trial to determine whether Inhibikase Therapeutics’ oral therapy IkT-148009 succeeds in the goal of restricting Parkinson's progression. lkT-148009, a small-molecule oral medication, aims to block activation of Abelson tyrosine kinase (c-Abl), a regulator that plays a key role in Parkinson’s progression. Researchers believe that blocking the c-Abl activation process may restore neuroprotective mechanisms and prevent or reverse the loss of dopamine-secreting neurons in the brain and gastrointestinal tract.
- Led by neurologist Dr. Chin-Song Lu, a research team in Taiwan has found that people with Parkinson's who added PS128, a psychobiotic that can modulate dopamine and serotonin neurotransmitter levels, to their medication regimen experienced significant improvements in motor symptoms and in reported quality of life.
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 firstname.lastname@example.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 email@example.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
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