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/