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

March 9, 2019 – Parkinson’s Weekly Update

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

  • Researchers delivered a sobering statistic that if you can survive more than 10 years with Parkinson’s, there is a greater than 50% chance of developing dementia…and reminded us that regular exercise is the best intervention to avoid becoming a statistic.
  • Fee-fi-fo-fum, this woman can smell the musky smell of Parkinson’s…the fascinating story of a wife who nagged her husband about his hygiene for years before his PD diagnosis…20+ years later researchers are using her to sniff out biomarkers that can be used for early detection.
  • Michael J. Fox told an interviewer about a rather serious fall…most news outlets focused on the fall…but the original interview is an inspiring read.
  • Meanwhile, as part of an initiative to reduce falls and prevent freezing of gait, the Michael J. Fox Foundation is funding testing of an in-shoe wearable device that uses vibration therapy.
  • Mirror mirror on the wall, who’s the shakiest of them all? A tech startup is developing a mirror-based system that uses artificial intelligence to assess the severity of Parkinson’s Disease.
  • It is well known that over time, taking levodopa/sinemet becomes less effective for treating Parkinson’s symptoms. A new study aims to determine whether or not levodopa contributes to PD getting worse.
  • Meanwhile, researchers study the scientific importance of a good night’s sleep in such excruciating detail that it puts us to sleep. Zzzzzzzzz…
  1. Past statistics indicate 57% of patients suffering from PD develop mild cognitive impairment within five years of their initial diagnosis, and if they survive more than ten years, the majority will eventually develop dementia. A recent study reminds us that exercise does more than just improve motor symptoms of Parkinson’s Disease, such as tremor, gait disturbances, and postural instability. Exercise can improve non-motor symptoms of Parkinson’s disease, specifically mental and cognitive function. They concluded that all types of exercise are associated with improved cognitive function in individuals with PD, with high intensity aerobic exercise appearing to best improve memory. More details: https://parkinson.fit/forums/topic/exercise-can-improve-non-motor-symptoms-of-pd-hint-mental-cognitive-function/
  2. Fee-fi-fo-fum, this woman can smell the musky smell of Parkinson’s. Les Milne was diagnosed with Parkinson’s Disease in 1995 at the age of 45. His wife, Joy, had noticed that he had a woody, musky odor…something that had started more than 10 years prior to this diagnosis. Back then, she had started suggesting to him that he wasn’t showering frequently enough or brushing his teeth enough. Finally, like many wives, she gave up trying to improve his hygiene. In 2012, 17 years after the PD diagnosis, the couple were at a Parkinson’s awareness conference when Joy realized that she was surrounded by people that smelled like her husband. Les passed away in 2015, but researchers at the University of Manchester (UK) dubbed Joy the “super smeller” and are following the scent in search of a biomarker that can be used for early detection. Preliminary research has identified several candidates. Along the way, we discover that it’s not excessive sweat, it’s excessive sebum…and why people with Parkinson’s are more likely  to have dandruff. This story is an improbable journey: https://parkinson.fit/forums/topic/the-woman-who-can-smell-parkinsons-why-you-have-dandruff-and-biomarkers/
  3. Michael J. Fox opened up about some of his recent health issues in an interview with the New York Times Weekend Magazine. Various news outlets did their own reporting with a bit of a “doom and gloom” spin, but if you read the original full interview, it’s rather positive and inspiring. In spite of all the challenges, his closing quote is a gem: “It makes me think, Can I just keep going in this adventure? Because if the worst I’ve had is as bad as it gets, it’s been amazing.” Read the interview here: https://www.nytimes.com/interactive/2019/03/01/magazine/michael-j-fox-parkinsons-acting.html
  4. A startup based on University of Delaware research, has received a $440,000 grant from The Michael J. Fox Foundation for Parkinson’s Research to test an in-shoe wearable device, called VibeForward, that uses vibration therapy to reduce symptoms of freezing of gait in patients with Parkinson’s Disease. This funding is part of a Fox Foundation initiative launched in 2018 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. Injuries from falls severely impact the quality of life for people with Parkinson’s Disease, as evidenced by Michael J. Fox’s personal account of his recent health issues. We dig up some of the backstory of the PDShoe research project that has now evolved into VibeForward: https://parkinson.fit/forums/topic/vibeforward-vibration-tech-reduces-freezing-of-gait/
  5. Mirror mirror on the wall, who’s the shakiest of them all? A startup in Australia is developing a mirror-based system that can assess the severity of symptoms of Parkinson’s Disease in the home. The mirror, called Lookinglass, has a display that is visible through the mirror, which asks the user to complete a set of evaluation exercises based on standardized tests used to assess Parkinson’s Disease severity. The key technology is the camera vision system that uses AI to track movement and provides an automated assessment that is then shared with health professionals. https://parkinson.fit/forums/topic/mirror-uses-ai-to-perform-routine-remote-evaluation-of-pd-symptoms-lookinglass/
  6. For those who are either new to, or unfamiliar with Parkinson’s Disease, one of the things that seems to surprise most people is that the prescription drugs have no effect one the disease itself. The drugs provide only symptomatic control. Whether you take the drugs or not, the disease progresses (gets worse), and the drugs have less ability to control the symptoms…requiring larger or more frequent doses…and/or becoming less effective. There is a school of thought among some neurologists (and a larger proportion of their patients) that you should delay taking levodopa medication until it is absolutely necessary, especially for those diagnosed with PD at a younger age. There is considerable fear that levodopa may actually cause PD to progress more rapidly.  A recent study says there is no reason for concern, and that their results show “No Harm in Using Levodopa Early in Parkinson’s for Symptom Relief…levodopa, in combination with carbidopa, did not have a disease-modifying effect on Parkinson’s disease, either beneficial or detrimental, over the 80 weeks of the trial.” That’s good news, because as an alternative to levodopa, many of these neurologists prescribe dopamine agonists, a category of drugs that have a surprising efficacy in destroying lives. More information here: https://parkinson.fit/forums/topic/no-harm-in-using-levodopa-early-so-please-dont-prescribe-a-dopamine-agonist/
  7. There were  two interesting studies drawing connections between PD and sleep released last week. On the one hand, people with a sleep disorder called REM sleep behavior disorder (RBD) were found to have an extremely high risk of developing Parkinson’s Disease: https://www.medicalnewstoday.com/articles/324630.php
    On the other hand, Israeli researchers discovered sleep is necessary to repair DNA damage accumulated during our waking hours, holding promise for new treatments for neurodegenerative diseases like PD. There’s an interesting article about the study, with so much scientific discussion of sleep that it just might put you to sleep. Seriously, it’s a good read: https://www.israel21c.org/sleep-vital-to-repair-dna-damage-israeli-study-finds/
  8. Bonus Content: Brian Grant had an impressive 12-year career in the NBA before being diagnosed with Parkinson’s. Fellow PDer Scott Rider has a great video interview with Brian, where they talk about the Brian Grant Foundation, and life with PD, especially earlier onset PD. Scott is fundraising for the Parkinson’s Foundation. Through May 1, 2019, MassMutual will donate $1 to the Parkinson’s Foundation for each of the next 5,000 subscribers to his YouTube channel. So head to his YouTube channel and help him reach his goal: Scott Rider – I Won’t Quit

Previous Week – March 3, 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/