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/

PD 101: Exercise, Medication, Nutrition & Lifestyle

Since being diagnosed with PD in 2014, I’ve had the pleasure to meet individuals who have lived with Parkinson’s for 10 to 20 years, and even longer. The common theme for living well with PD is regular exercise and staying active. PD may be a life sentence, but it is far from being a death sentence.

Think of exercise as your most important prescription, something that you need to make time for almost every day. Exercise is more important than any medication, but medication is often necessary or helpful to maximize your ability to exercise.

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The case for Vitamin B1 (Thiamin) and Parkinson’s

There is an Italian doctor, Antonio Costanini, who treats Parkinson’s patients with high doses of Vitamin B1 (Thiamin). He first published a report about his results in 2013: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3762356/

There are interesting Before/After Patient videos (in Italian, but some have subtitles)…a few are embedded below, more are available at:
http://www.ultimaedizione.eu/video-parkinson-pazienti-prima-e-dopo-il-trattamento/

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