May 11, 2019 – Parkinson’s Weekly Update

Weekly Update – Highlights include: Mayo Clinic researchers explore the relationship between low levels of Vitamin B-12 and Parkinson’s; appendix removal might or might not affect Parkinson’s risk; monkey butt research finds PD related proteins linked to inflammation; impulse control disorders and PD; Pharmaceutical News from the Annual Meeting of the American Academy of Neurology; technology targets freezing of gait; creating your own placebo effect; inspiring people with Parkinson’s talk boxing, DBS and poetry; and more.

This is a round-up of Parkinson’s Disease news and information that caught our attention last week.

Highlights include: Mayo Clinic researchers explore the relationship between low levels of Vitamin B-12 and Parkinson’s; appendix removal might or might not affect Parkinson’s risk; monkey butt research finds PD related proteins linked to inflammation; impulse control disorders and PD; Pharmaceutical News from the Annual Meeting of the American Academy of Neurology; technology targets freezing of gait; creating your own placebo effect; inspiring people with Parkinson’s talk boxing, DBS and poetry; and more.

Mayo Clinic published a research commentary that analyzes the relationship between low levels of Vitamin B-12 and Parkinson’s Disease. While the paper does not prove causality, it does “propose that vitamin B12 supplementation could be considered as an adjuvant approach to improve cholinergic transmission and, potentially, motor and cognitive function in patients with PD.” And it makes a case for “future clinical trials of high-dose vitamin B12 supplementation as a well-tolerated symptomatic adjunctive therapy for posture and gait instability and cognitive impairment in PD.” Read more:
https://parkinson.fit/forums/topic/mayo-clinic-report-on-low-vitamin-b-12-and-parkinsons-disease/

The story that generated the most headlines last week was a review study that concluded that people who have had their appendix removed were 3 times more likely to develop Parkinson’s Disease. While that sounds worrying, it basically meant that the odds of developing PD jumped from 0.3% to 1%…significant, but not what I’d call a smoking gun…especially when just a few months ago, a European study found the opposite. Yawn…boring. But if you must read about it, this Fox Foundation article has info about these conflicting stories:
https://www.michaeljfox.org/foundation/news-detail.php?the-appendix-what-the-link-to-parkinson

Researchers at the University of Wisconsin Madison were playing a game of “smell my finger” with a group of monkeys when they realized something. (I’m told that’s not exactly how it happened.) They were able to detect chemical alterations (phosphorylated alpha-synuclein) similar to abnormal protein deposits in the brains of Parkinson’s patients in the intestines linings of monkeys with inflamed bowels. This is interesting because it adds support to the idea that inflammation may play a key role in the development of PD. Longer term, if this was found to correlate as a PD biomarker in humans, PD detection could be offered in conjunction with a regular colonoscopy.
More details: https://neurosciencenews.com/parkinsons-monkey-gut-inflammation-13066/

That last story reminds me of when my kids were younger and they were fond of asking me “You know what?” When I’d dutifully reply “What?” They would enthusiastically reply back “Monkey Butt!” To think that somewhere in Wisconsin, a similar dialog exchange may have inspired that research study. In which case, I’m going to propose that a follow-up study should evaluate a promising drug candidate that can not only treat inflamed monkey bottoms, but just might cure Parkinson’s: Anti Monkey Butt Powder.

Impulse control disorders (ICDs) are a frequent side effect of dopamine agonist medications that are sometimes used to treat Parkinson’s Disease, in some cases leading to serious financial, legal and/or devastating  psychosocial consequences. An article from Argentinean neurologists provides a great overview of ICDs, allowing you to become more aware of what to look out for. ICDs  involve pleasurable behaviors performed repetitively, excessively, and compulsively, with a failure to resist an impulse or temptation to control an act or specific behavior, which is ultimately harmful to oneself or others and interferes in major areas of life. The major symptoms of ICDs include pathological gambling, hypersexualtiy, compulsive buying/shopping and binge eating. The spectrum of ICDs also includes punding, hobbyism, walkabout, hoarding, and compulsive medication use.
More: https://doi.org/10.3389/fneur.2019.00351

The Micheal J. Fox Foundation issued an update to their Parkinson’s Diet Guide. While there is no one specific diet for Parkinson’s, what you eat and when can affect your medications and symptoms. The updated guide explores these topics as well as research on popular regimens (such as the ketogenic and Mediterranean diets) and Parkinson’s: http://www.michaeljfox.org/foundation/news-detail.php?updated-guide-diet-and-parkinson

Pharmaceutical News from the Annual Meeting of the American Academy of Neurology

The 71st Annual Meeting of the American Academy of Neurology was held in Philadelphia last week. This is a big event for drug companies to draw attention to the latest pharmaceutical studies. There were no major new advances in Parkinson’s Disease treatment, but there were a few updates of interest.

The DUOGLOBE study is a 3-year evaluation of the real-world effectiveness of levodopa-carbidopa intestinal gel (DUOdopa/duopa) on motor fluctuations and duration and severity of dyskinesia in patients with advanced Parkinson’s disease (51% study participants ≥10 years’ disease duration). An interim analysis of first year results reported significantly reduced patient-reported OFF time (mean decrease of 4.1 hours), and significantly reduced dyskinesia. https://www.medscape.com/viewarticle/912601

Last December (2018), the FDA approved a levodopa inhalation powder (Inbrija from Acorda Therapeutics) for intermittent treatment of OFF episodes in people with Parkinson disease treated with carbidopa/levodopa. Results were shared from an extension study of the original SPAN-PD study, showing that this levodopa inhalation powder is effective in achieving an ON state during OFF periods, as well as in gaining more dyskinesia-free ON time and lowering the daily amount of OFF time.
https://www.neurologyadvisor.com/conference-highlights/aan-2019-conference/inhaled-levodopa-effectively-maintains-on-state-in-parkinson-disease/

San Diego-based Neurocrine Biosciences presented data from two Phase III clinical trials of opicapone, a once-daily, oral catechol-O-methyltransferase (COMT) inhibitor for Parkinson’s disease. They found that patients receiving opicapone 50 mg with levodopa had a significant and sustained improvement in symptoms. The studies (BIPARK-1 and BIPARK-2) found that the combination of the drugs had a significant and sustained increase in ON time without problematic dyskinesia in Parkinson’s patients who had motor fluctuations. Opicapone is already approved in Europe since June 2016 as Ongentys by BIAL. In February 2018, Neurocrine licensed opicapone for development and commercialization in the U.S. and Canada from BIAL.
https://www.biospace.com/article/neurocrine-s-opicapone-plus-levodopa-improves-parkinson-s-symptoms/

After more than a decade of studies, the three year phase 3 clinical trial of isradipine study is complete. The study of the blood pressure drug isradipine did not show any benefit for people with Parkinson’s disease. The drug isradipine had shown promise in small, early studies and hopes were high that this could be the first drug to slow the progression of the disease. “Unfortunately, the people who were taking isradipine did not have any difference in their Parkinson’s symptoms over the three years of the study compared to the people who took a placebo,” said study author Tanya Simuni, MD, of Northwestern University Feinberg School of Medicine in Chicago and a member of the American Academy of Neurology.
https://parkinson.fit/forums/topic/isradipine-phase-3-study-results-expected-soon/#post-115567

The open-label EASE LID 2 study concludes that long-term use of amantadine (specifically the extended release formulation Gocovri from Adamas Pharmaceuticals) in conjunction with levodopa treatment may help patients optimize their levodopa regimen. In layman’s terms, this vaguely worded endorsement is due to results showing minor motor improvements in UPRDS scores after amantadine is added to an existing carbidopa/levodopa treatment plan.
https://www.neurologyadvisor.com/conference-highlights/aan-2019-conference/amantadine-may-optimize-levodopa-regimen-in-parkinson-disease-treatment/

PD Technology Spotlight

A Cal Poly (California Polytechnic State University) student project to help a local military veteran has become a business designed to help patients with Parkinson’s disease overcome a debilitating and dangerous symptom known as “freezing of gait.” De Oro Devices, based in San Luis Obispo, California, recently edged out six other startups for a $100,000 investment during the second annual Central Coast Angel Conference Pitch Competition held in April by the university. While working on the project as part of the Quality of Life Plus (QL+) program, which pairs the challenges of wounded vets with student projects, student Sidney Collin piggybacked on research showing that audio and visual cues can interrupt freezing of gait to re-establish the brain-body connection and restore mobility. While those features were integrated into existing devices, they couldn’t be added to a person’s cane or walker. And other devices didn’t provide on-demand cueing. “It was either always on or always off, and that was a problem for a lot of people,” Collin said. The device, called the Gaitway, is slightly bigger than a computer mouse and easily attaches to a cane or walker. When a patient gets stuck, he or she can activate an audio cue (a metronome beeping noise) or a visual one (a green laser line that projects on the ground), which will interrupt the freezing of gait.
https://parkinson.fit/forums/topic/device-provides-on-demand-cues-to-recover-from-freezing-of-gait/

Chinese technology company Tencent, in collaboration with UK medical start-up Medopad, has launched a clinical trial in London that aims to use artificial intelligence to diagnose people living with Parkinson’s.  40 participants will use an artificial intelligence powered mobile app to track and monitor their symptoms. The app will ask users to participate in a number of online tests, such as performing hand movements in front of their phone’s camera, that will help doctors gather information on the development of their condition.
https://parkinsonslife.eu/parkinsons-ai-trial-launched-chinese-tech-giant/

Researchers from Osaka University (Japan) have developed an automated tool that uses ultrasonication to quickly measure α-synuclein aggregates, potentially enabling early diagnosis and assessment of new treatments for Parkinson’s disease. The HANdai Amyloid Burst Inducer (HANABI) device uses a burst of ultrasonication to detect α-synuclein aggregation in cerebrospinal fluid. Ultrasonication induces pressure variations, transforming sound waves into mechanical energy. The authors expect the HANABI device to be used for to clinical diagnosis, severity assessment, and treatment development for Parkinson’s disease.
https://www.eurekalert.org/pub_releases/2019-05/ou-nar050719.php

Placebo Effect & Dopamine – Theories & Application

From the first time I read about it, I’ve been fascinated by the placebo effect. The placebo effect is a big challenge in clinical trials for a new drug or treatment. In these so-called double blind studies, there is one group of patients that receives the treatment and another group that receives a fake treatment known as the placebo. The patients, and those evaluating the patients do not know who is receiving the real treatment or the placebo until the end of the study. For a treatment to be deemed effective, the patients who received the treatment need to fare better than the placebo group in a statistically significant way. In other words, the treatment being tested has to prove that it’s better than nothing…a challenge that is surprisingly difficult to meet.

A big part of the problem in trials related to Parkinson’s Disease is that there are significant numbers of individuals that see improvement during these tests as part of the placebo group. This has fascinated me. I’ve wanted to understand this better, so that I can create my own placebo effect.

I created a presentation video to explain why dopamine’s significance in Parkinson’s Disease invites the placebo effect and offer some suggestions how people with Parkinson’s can leverage this to create placebo effects.

More: https://parkinson.fit/placebo/

 

Inspiring People with Parkinson’s

Parkinson’s Life profiled Jennifer Parkinson, who was diagnosed with young onset Parkinson’s Disease 14 years ago at the age of 32. After 4 years of worsening symptoms, she discovered boxing, and testifies “Boxing changed my way of life and gave my kids their mum back.” Jennifer now runs a non-profit boxing and fitness organization helping people with Neurological disorders such as Parkinson’s, MS, Stroke, and Traumatic Brain Injury.
https://parkinsonslife.eu/theres-a-stigma-that-if-you-dont-look-sick-then-there-is-nothing-wrong/

David Sangster was diagnosed with young onset Parkinson’s Disease 8 years ago at the age of 29, and has been extremely active as an advocate for Parkinson’s issues in the UK. Worsening motor symptoms and Dyskinesia led him to consider Deep Brain Stimulation (DBS). In a recent video, he shares his excitement about regaining control of his Parkinson’s symptoms:

Poetry is not normally my thing, but Wayne A. Gilbert’s “PD Refusenik” is an entertaining and introspective protest of a conscientious objector being asked to battle Parkinson’s. Wayne is, among other things, a lover, not a fighter. He is also a retired teacher and professor of English and of Educational Psychology. He was diagnosed with Parkinson’s in 2005 and has been writing about his experiences living with it ever since. Thanks to the Davis Phinney Foundation for sharing Wayne’s video.

Parkinson’s Exercise Programs in the News

Previous Week – May 4, 2019

April 13, 2019 – Parkinson’s Weekly Update

Parkinson’s Disease features this week: World Parkinson’s Day awareness around the globe; boxing helps a husband get his wife back from Parkinson’s grip; bionic assistance for raising a middle finger as a PD salute; a young onset PD perspective on bucket lists; virtual reality training for balance; detecting early stage Parkinson’s with a selfie (and not just because the camera is shaking); people with Parkinson’s in the UK are tired of people thinking they are drunk; and more.

  1. Thursday, April 11 was World Parkinson’s Day 2019, a day on which various organizations try to draw public awareness to issues surrounding Parkinson’s Disease. Globally, a lot of attention was focused on drawing attention to the fact that Parkinson’s doesn’t just affect senior citizens, with news stories introducing us to younger people who are living with Parkinson’s Disease. Another recurring theme was that the number of people diagnosed with Parkinson’s is growing, and there is a shortage of qualified Movement Disorder Specialist (MDS) neurologists available for treatment, frequently taking months to get an appointment. We’ve got a review of awareness stories from around the world that caught our attention here:
    https://parkinson.fit/forums/topic/world-parkinsons-day-2019-i-aint-drunk-im-just-thinkin/
  2. For World Parkinson’s Day, BioSpace published a great round-up of current scientific efforts to battle Parkinson’s Disease:
    https://www.biospace.com/article/world-parkinson-s-day-a-look-at-developments-in-the-treatment-of-parkinson-s-disease/
  3. A Salt Lake City TV station ran a great feature about a boxer at Rock Steady Boxing Wasatch Front in Utah. Brandi Ballantyne was diagnosed with Parkinson’s Disease 6 years ago. It’s hard not to get choked up when her husband Paul tells how thanks to boxing he got his wife back from Parkinson’s grip. She is now a Rock Steady Boxing coach leading classes to help others. https://parkinson.fit/forums/topic/rock-steady-boxing-helps-husband-get-wife-back/
  4. Researchers in Australia developed an intriguing new device that can diagnose Parkinson’s Disease by attaching to your hand and bending your middle finger. It’s called the BiRD for Bionics Institute Rigidity Device. We think this could inspire a new World Parkinson’s Day tradition. In addition to helping diagnose Parkinson’s, the BiRD offers a therapeutic benefit to patients by bionically assisting them in defiantly raising their middle finger at Parkinson’s Disease. https://parkinson.fit/forums/topic/possible-new-world-parkinsons-day-tradition-giving-pd-the-bird/
  5. On a similar note, what do you do when you’re diagnosed with Parkinson’s at 29? In 2013, Emma Lawton was diagnosed with PD and embraced the challenge. She did everything that previously scared her by swapping ‘no’ for ‘yes’ and expanding her world. She became a spokeswoman for her newfound ‘PD family’ and worked hard spreading awareness. In 2017 her neck muscles began to weaken and her head dropped. Getting around became difficult and her world that once expanded now shrunk to smaller than it had ever felt before. This year, she’s decided to invest some time in herself and her happiness, and ask why we reserve “bucket lists” for when someone knows they’re dying. She’s living life to the fullest this year, and she calls it “the f— it list”:
    https://www.thef—itlist.com and
    https://parkinsonslife.eu/emma-lawton-bucket-list-project/
  6. Researchers at the University of Utah are reporting early success with a new tool to help people with Parkinson’s disease improve their balance and potentially decrease falls with high-tech help: virtual reality. After practicing with a virtual reality system for six weeks, people with Parkinson’s disease demonstrated improved obstacle negotiation and balance along with more confidence navigating around obstacles in their path.
    https://www.sciencedaily.com/releases/2019/04/190409162815.htm

    https://www.dailymail.co.uk/health/article-6904639/Virtual-reality-reduced-Parkinsons-symptoms-10-people.html
  7. Bizarre news out of Ireland, as tablets used to treat Parkinson’s disease have being packaged as Xanax sedatives and smuggled into Ireland for sale on the black market. In recent months there had been four major seizures of counterfeit Xanax. Each involved tens of thousands of tablets packaged as Xanax but were instead tablets used to treat Parkinson’s disease. Investigators are wondering “Is it people who are looking for a cheaper form of the drug and they think they are getting what they need cheaper? Or is it people who are looking to abuse [the drug]?”
    https://www.irishtimes.com/news/crime-and-law/parkinson-s-disease-medicines-repackaged-as-xanax-for-sale-on-irish-market-1.3854584
  8. On World Parkinson’s Day, every major news outlet in the UK ran stories about people with Parkinson’s being wrongly accused of being drunk. While this may be a subject of embarrassment to those of us with PD, the message appears to have been successful in spreading awareness. Some of us are easily distracted, and our thoughts kept drifting to the late great master of the telecaster, Albert Collins, performing the blues classic “I Ain’t Drunk, I’m Just Drinkin’”. This song is begging to be reworked as an epic Parkinson’s anthem, “I Ain’t Drunk, I’m Just Thinkin’”…where instead of questioning how many drinks the singer has had, he is questioning how many carbidopa/levodopa tablets he has taken…as it can be so easy to lose count. Links to these UK news stories and a video of Albert Collins performing his politically incorrect drinking anthem:
    https://parkinson.fit/forums/topic/world-parkinsons-day-2019-i-aint-drunk-im-just-thinkin/
  9. People with Parkinson’s in Burlington, Vermont showed off their dance moves as a flash mob to increase Parkinson’s awareness:
    https://www.wcax.com/content/news/Flash-mob-raises-awareness-about-Parkinsons-disease-508511501.html?ref=501
  10. Parkinson's SelfieCould Parkinson’s Disease be detected by a selfie? This seems like a rather cruel trick to me, as despite considerable advances in image stabilization technology, it can be quite a challenge to take a selfie when you have Parkinson’s! A teenager has created an app that requires only a camera equipped smartphone to detect Parkinson’s Disease using early-stage facial expression indicators. Initially developed and validated through two pilot studies, FacePrint is currently preparing for upcoming clinical trials with the Michael J. Fox Foundation and Stanford Medical School.
    https://parkinson.fit/forums/topic/could-a-selfie-detect-parkinsons-disease-parkinsons-selfie-challenge/
  11. A startup based at the University of South Australia in Adelaide is releasing an app to remotely assess Parkinson’s Disease progression. Used in conjunction with a smart mirror, the software uses AI to track movement and compares it with known Parkinson’s symptoms.
    https://parkinson.fit/forums/topic/mirror-uses-ai-to-perform-routine-remote-evaluation-of-pd-symptoms-lookinglass/#post-111104
  12. Power for Parkinson’s in Austin Texas is promoting a new vigorous exercise class for people with Young Onset Parkinson’s Disease. https://www.kvue.com/video/news/health/free-exercise-class-by-power-for-parkinsons/269-40e9c93d-449e-4625-a7c5-089af14cc470
  13. Ever wondered why April 11 was chosen as World Parkinson’s Day, or why a red tulip is often used to symbolize the disease? This article from a health website in India is a great primer to prepare you for trivial pursuit questions about Parkinson’s: https://www.thehealthsite.com/diseases-conditions/world-parkinsons-disease-day-all-you-need-to-know/
  14. Rock Steady Boxing affiliates continued to promote awareness of the importance of exercise for people with Parkinson’s:

Previous Week – April 6, 2019

March 31, 2019 – Parkinson’s Weekly Update

This is a recap of the most interesting news and discussions related to Parkinson’s Disease this past week.

Blame it on the Parkinson'sWe start by looking ahead to Parkinson’s Disease Awareness which starts on Monday by revisiting the funniest (and most relatable) Parkinson’s Disease awareness video of all time. We then realize that we may be personally too aware of PD, so we take a look at awareness months for other diseases and health issues. Next up we try to avoid the big gun debate while reporting on an intriguing case study of “gun therapy” for Parkinson’s; a hip-hop dance demonstration inspires one of the dancers to investigate repurposing a wearable designed for entertainment to help improve gait in PD patients; Fox Foundation commits $1 million to help a company build a PET tracer that can better map brain inflammation for future clinical trials; dolphins are developing Alzheimer’s in Florida; milk may increase Parkinson’s risk; dance therapy in Memphis; and rethinking music therapy.

    1. Parkinson’s Disease Awareness Month starts Monday, April 1. As April 1 is traditionally a day of laughs, I propose kicking off your PD awareness experience with the best and funniest (and most relatable) Parkinson’s Disease awareness video of all time, Mitch Faile’s “Blame it on the Parkinson’s”: https://parkinson.fit/blame-it-on-the-parkinsons/
    2. Who decides which disease or cause can lay claim to a month as its’ month of awareness? How did Parkinson’s Disease get April? It’s not that I don’t believe that PD deserves an awareness month, or that April doesn’t work for me. My issue is that I feel like a hypocrite. I am so aware of Parkinson’s Disease, that I have been completely unaware of awareness months for any other diseases or causes in the past year. Therefore, I think there is no better way for those of us with PD to start Parkinson’s Disease Awareness Month than to raise our awareness of other diseases and health concerns. Take this opportunity to learn about challenges that others are facing; learn about prevention and health screening for other health ailments; and consider also supporting organizations that devote themselves to worthwhile causes…we’ve collected a list of other awareness months here: https://parkinson.fit/parkinsons-awareness-month-is-a-time-to-look-outward-not-inward/
    3. Please put aside any preconceived thoughts on guns…whether you are pro “gun rights” or pro “gun control”, David Smith’s Parkinson’s Disease “gun therapy” is one of the most intriguing and inspirational PD stories of recent weeks. Diagnosed with Parkinson’s 8 years ago, David found nothing that would help with his tremors. He had always enjoyed shooting at the gun range, and would shoot at least every other week, sometimes more frequently. He realized that the activity was calming for his tremors, so he decided to do it more frequently. Now, he is in the big leagues…a professional shooter who has been chosen to be on the US team at the IPSC Rifle World Championship in Sweden this fall: https://parkinson.fit/forums/topic/competitive-shooter-uses-gun-therapy-to-help-manage-parkinsons/
    4. Two college professors in Buffalo (New York) collaborated to create a wearable device called Electroskip that creates music in response to dance and movement. The anticipated applications for the device were in arts and entertainment. To help demonstrate the device for a TEDx Talk, they enlisted the help of a hip-hop dance crew from their university. One of the dancers was in the process of completing a PhD in Physical Therapy, and recognized that the device may be useful for gait training improvements in Parkinson’s Disease. The company is now pivoting Electroskip toward more of a medical direction, and are currently seeking FDA approval as a medical device that helps people with walking disabilities. https://parkinson.fit/forums/topic/electroskip-device-straps-to-shoe-and-uses-auditory-cues-to-improve-gait/
    5. Inflazome received a grant of more than $1 million from the Michael J. Fox Foundation to fund the development of an NLRP3-specific Positron Emission Tomography (PET) tracer that allows non-invasive imaging of inflammasome-driven brain inflammation. Inflazome focuses on developing ways of blocking inflammasome signaling to eliminate unwanted inflammation. The NLPR3 inflammasome is believed to drive chronic inflammation linked to many neurodegenerative diseases, including Parkinson’s Disease. The PET tracer is designed to determine what dosages are needed for clinical trials. More details:  https://www.biospace.com/article/inflazome-funding-from-the-michael-j-fox-foundation-underlines-foundation-involvement-in-research/
    6. A long-term research study in Sweden concluded that people who drink 40ml (1.3oz) or more of milk per day were about 30% more likely to develop Parkinson’s Disease. By contrast, yogurt or soured milk was not found to cause any increased or decreased risk of developing Parkinson’s. Parkinson’s News Today provides more detail: https://parkinsonsnewstoday.com/2019/03/27/milk-linked-increased-risk-parkinsons-disease/
    7. The environmental toxin beta-methylamino-L-alanine (BMAA) has long been suspected of playing a role in some cases of neurological disorders. Hints about the potential health threat of BMAA date back to the aftermath of World War II in the remote Pacific island of Guam. U.S. Army physicians encountered an outbreak of a strange syndrome that the native people called lytico-bodig—the term lytico signifying paralysis and bodig dementia. Some victims had ALS-like symptoms, others exhibited the rigid posture of Parkinson’s disease, and still others displayed the mental fogginess typical of Alzheimer’s. A 2011 article in Discover Magazine asked “Are Toxins in Seafood Causing ALS, Alzheimer’s, and Parkinson’s?” and pointed to concerns that BMAA was being produced by blue-green algae.
      Now, in an alarming new study that has implications for people living along the Florida coast, scientists have discovered that dolphins there appear to be suffering from a condition similar to Alzheimer’s disease caused by BMAA toxins from common algae. University of Miami researchers examined the brains of 14 dolphins, some of which had beached themselves. Half of the marine mammals were found stranded in areas with frequent harmful algal blooms: the Banana River, Indian River Lagoon, the Atlantic Ocean, and the Gulf of Mexico. Thirteen of the dolphins’ brains had excessive levels of BMAA.  The University of Miami research report was published in PLOS One. More details at https://parkinson.fit/forums/topic/algae-toxin-dolphin-alzheimers/
    8. Are you curious about dance programs for Parkinson’s Disease? WREG News Channel 3 in Memphis pays a visit to the Dance for PD class at Ballet Memphis: https://www.facebook.com/parkinsonfit/posts/2325431524405986https://www.facebook.com/parkinsonfit/posts/2325431524405986
    9. Existing music therapy for Parkinson’s Disease helps people, but to me, it seems more geared to my grandfather’s generation. Wired Magazine has an interesting video titled “How Does Music Affect Your Brain? Every Imaginable Way” https://www.wired.com/story/tech-effects-how-does-music-affect-your-brain/.
      Meanwhile, Tomas Matthews, a PhD candidate at Concordia University in Montreal, is researching how brain regions involved in the different aspects of musical groove interact: http://theconversation.com/groovy-findings-researching-how-and-why-music-moves-you-112959.
      We don’t want to overthink it, because we know a good tune when we hear it. But, we do think it’s time to rethink music therapy, and give it a rock and roll transfusion: https://parkinson.fit/forums/topic/rethinking-music-therapy-for-parkinsons-disease/

Previous Week – March 23, 2019

February 25, 2019 – Parkinson’s Weekly Update

This is a recap of the most interesting news and discussions relating to Parkinson’s Disease this past week.

We saw people with Parkinson’s in Tasmania (Australia) turning heads with the latest Parkinson’s Disease fashion trend, wearing red light buckets on their heads. They say it helps improve their symptoms. We saw study results that told us that while research on the gut bacteria/PD connection continues, we should also be aware that gut bacteria can interfere with levodopa treatment. Rock and roll legend Peter Frampton was diagnosed with Inclusion Body Myositis, a rare disease that based on some of the symptoms, could be misdiagnosed as Parkinson’s Disease. Those are just a few of the hot topics from last week.

  1. Grace Winiecki was turning heads last week with a story from ABC News Australia about a clinical trial of photobiomodulation treatment for Parkinson’s Disease. While it seems a little bit out there, apparently this is neither a joke nor a fashion statement. Grace Winiecki spends 40 minutes each day with a red light bucket on her head — a device she claims is making a significant difference to her life. We’ve collected more on the story here: https://parkinson.fit/forums/topic/wearing-a-red-light-bucket-on-your-head-for-parkinsons/
  2. Hardly a week goes by where there isn’t another study exploring the connection between gut bacteria and Parkinson’s Disease. While research continues to try to understand exactly how different strains of gut bacteria are involved in the development and/or progression of PD, researchers at the University of Groningen in the Netherlands have recently released a study that shows how a certain type of gut bacteria interfere with the effectiveness of levodopa drug treatment for Parkinson’s Disease. This could explain why some people require higher doses of levodopa to see an effect. We’ve posted more thoughts and links about this study here: https://parkinson.fit/forums/topic/gut-bacteria-can-interfere-with-the-effectiveness-of-levodopa-sinemet/
  3. About eight years ago, Peter Frampton started to notice that his ankles felt a little tight in the morning. He initially dismissed it as one of the many pains that comes with getting older, but as time passed, his legs began feeling weak as well. He tried to ignore the signs that something was wrong until four years ago when a fan kicked a beach ball onto the stage at one of his concerts and he fell over when he tried to kick it back. “My legs just gave out,” he says. “We all joked, ‘He’s fallen and he can’t get up.’ But I was embarrassed.” Two weeks after the beach ball incident, he tripped over a guitar cord on his stage and collapsed again. He was also noticing that his arms were getting so weak that loading heavy objects onto the overhead compartments of planes was becoming extremely difficult. Can you relate? In his case, it wasn’t Parkinson’s: https://parkinson.fit/forums/topic/peter-frampton-inclusion-body-myositis/
  4. Last year, the Michael J. Fox Foundation launched an initiative to evaluate non-pharmacological interventions that have the potential to significantly improve the daily lives of people with Parkinson’s, particularly related to the treatment of gait and balance. Honda and Ohio State University received a grant from this initiative to conduct a Phase II randomized controlled trial to study the impact of an eight week intervention using the Honda Walking Assist Device to improve mobility in people with PD. Get acquainted your new robotic exoskeleton here: https://parkinson.fit/forums/topic/honda-walking-assist-and-similar-technologies/
  5. We also revisited Dr. Laurie Mischley’s mission to collect as much data as possible over a five-year period with the hope of finding dietary and lifestyle factors associated with a slower disease progression of Parkinson’s. We revisited the results of her 2017 study of the “Role of Diet and Nutritional Supplements in Parkinson’s Disease Progression”, and shared links to two of her recent presentations on the topic: https://parkinson.fit/forums/topic/role-of-diet-and-nutritional-supplements-in-parkinsons-disease-progression/