June 10, 2019 – Parkinson’s Weekly Update

World Parkinson Congress 2019 Highlights: Remembering Tom Isaacs; Advice to caregivers: “Be a bit more of a selfish pig”; triple amputee with PD exclaims “If I can do it, you can do it. Get out and go!”; PD diet & nutrition study analyzes real world diet of people with PD to determine what helps and what doesn’t; “Living Well, Running Hard: Lessons Learned from Living with Parkinson’s Disease”; plus a weekly roundup of Parkinson’s related news…

WPC2019World Parkinson Congress 2019, the premier global Parkinson’s Disease conference, took place in Kyoto (Japan) last week. Held every 3 years, the event was a bit smaller than WPC 2016 in Portland Oregon (USA), drawing around 3000 attendees compared to 4500 at the previous event. Undoubtedly, this was not due to a lack of interest, but due to more expensive and more difficult travel for those interested in attending.

WPC draws an eclectic mix of medical professionals, neurologists, physical therapists, researchers, charities, support organizations, people with Parkinson’s, caregivers, and pharmaceutical reps.

It’s actually quite amazing that the event organizers are able to develop a program that engages this diverse audience.

The opening ceremony was a definite highlight. As expected, it featured a moving tribute to Tom Isaacs, who passed away in 2017. Tom was a co-founder of Cure Parkinson’s Trust (CPT) in the UK, one of the premier global charities funding Parkinson’s research. In addition to leading CPT, Tom’s outsized personality encouraged us all to live well with Parkinson’s Disease, and he was an active participant in past WPC events. We previously shared some videos that pay tribute to Tom Isaacs here: https://parkinson.fit/forums/reply/99833/

Anders Leines’ video, which was in large part, a tribute to Tom Isaacs, was selected as grand prize winner of the WPC 2019 video competition.

The Selfish Pig's Guide to CaringTom’s widow, Lindsay Isaacs, spoke during the WPC 2019 opening ceremony. I was moved by her personal story as a caregiver, as she touched on her struggles, how she had reached a breaking point, and found a way forward with inspiration from a book, which advised “Don’t be such a good carer…try and be a bit more of a selfish pig.” More:

Another highlight of the opening ceremony was keynote speaker Linda K. Olson. In 1979, at the age of 29, Linda lost both her legs above the knee and her right arm in a “train vs. car accident” in Germany. She told her husband of 2 years, who was less seriously injured in the accident that if he wanted to leave her, she’d understand.  He responded “I didn’t marry your arms and your legs … if you can do it, I can do it.”

They chose to focus on what they could do, not what they couldn’t do. And they did a lot. Both had successful careers in radiology. They raised a family, and led very active lives.

In 2015, now in her mid-60’s, Linda was diagnosed with Parkinson’s Disease. Today she is committed to empowering Parkinson’s patients and families to live life as full as possible, in spite of their disabilities, and to get up, get out, and go. More: https://parkinson.fit/forums/topic/wpc2019-linda-k-olson-if-i-can-do-it-you-can-do-it-get-out-and-go/

I haven’t yet had enough time to organize and write about all of the interesting presentations at the conference, but one of the most interesting presentations for those of us with Parkinson’s was Microbiome and the Diet in PD”, and particularly Laurie Mischley’s presentation on diet and nutrition. Dr. Laurie Mischley of Bastyr University is a leading researcher on diet and nutrition as it relates to Parkinson’s Disease. She wrote a book on the topic that was published back in 2009, and has continued to focus on this topic over the decade since. In 2017, her team published a study titled “Role of Diet and Nutritional Supplements in Parkinson’s Disease Progression“, which analyzed  the dietary practices of people with Parkinson’s Disease and their rate of disease progression. The goal was to attempt to identify food and/or nutrition that were associated with either slower (better) or faster (worse) progression of PD. For more on Dr. Mischley’s research, we have previously shared videos of her past presentations on nutrition and PD: https://parkinson.fit/forums/topic/role-of-diet-and-nutritional-supplements-in-parkinsons-disease-progression/

While the presentations were great, my favorite part of World Parkinson Congress was the people. And if you know me personally, this statement may seem a bit puzzling, because I am not exactly what you’d call a “people person”. I am horrible at small talk and initiating conversation. I am introverted and don’t desire or particularly enjoy attention.

But when it comes to ideas and discussion within topics that I find interesting, I can become quite energetic and animated. I have a passion for learning and attempting to better understand these areas of interest.

The great thing about the WPC is that it provides a forum not just for experts to present to a large audience, but that also promotes one-to-one and small group dialog.

The Book Nook and Poster Hall are two such areas. The Book Nook highlights books about Parkinson’s (usually written by people with Parkinson’s), and provides “meet the author” opportunities. The highlight for me in this area was meeting John Ball, author of “Living Well, Running Hard: Lessons Learned from Living with Parkinson’s Disease”: https://parkinson.fit/forums/topic/wpc2019-john-ball/

I also had some interesting discussions in the poster hall, and look forward to analyzing some of this information in more detail before I share it.

This year, I also discovered the round tables, which were an interesting small group setting that gave an opportunity to gather like minded individuals to discuss topics of mutual interest. I had the opportunity to participate in a very small round table group and become acquainted with authors from two of my favorite Parkinson’s websites, and I’m hopeful that we will be able to collaborate on some future projects.

I’ll have more thoughts on WPC next week, but in the meantime, here are some other interesting Parkinson’s news highlights from the past week:

1. The fact that you have Parkinson’s Disease does not exempt you from also developing other diseases or conditions. We think it is worth drawing attention to a recent study that suggests that brushing your teeth may be a way to stave off the development of Alzheimer’s disease. The study provides new evidence of how bacteria associated with gingivitis contributes to the development of the neurodegenerative disease.
https://neurosciencenews.com/alzhimers-gum-teeth-14145/ Our advise is simple: “Spit, Don’t Rinse”

2. High Intensity Interval Training (HIIT) is a key component of many Parkinson’s exercise programs. The Brian Grant Foundation explains what it is, and why it helps: https://briangrant.org/why-high-intensity-interval-training-is-a-hiit-for-pd/

3. Practical advice for dealing with freezing episodes in advanced Parkinson’s Disease: https://parkinsonsnewstoday.com/2019/06/05/strategies-combat-freezing-parkinsons-disease/

4. Promising results from a mouse research study, where experimental drug anle138b breaks down clumps of alpha-synuclein in mouse brains: https://www.dailymail.co.uk/health/article-7102949/Hope-Parkinsons-researchers-REVERSE-symptoms-mice.html

5. Researchers at Osaka University in Japan are targeting alpha-synuclein build up with gene therapy: https://www.eurekalert.org/pub_releases/2019-06/ou-spd060519.php

6. Researchers are developing focused ultrasound therapy to enable drug treatments to penetrate the blood-brain barrier: https://www.sciencedaily.com/releases/2019/06/190606133754.htm

7. Scientists have recreated the blood-brain barrier outside of the body, in hopes of being able to better understand how it works: https://neurosciencenews.com/blood-brain-barrier-defect-14183/

8. The Trump administration announced that the U.S. federal government would sharply curtail federal spending on medical research that uses tissue from aborted fetuses, by ending fetal-tissue research within the National Institutes of Health. https://www.nytimes.com/2019/06/05/us/politics/fetal-tissue-research.html

Inspiring People With Parkinson’s

1. School Principal in Australia shares Deep Brain Stimulation (DBS) experience: https://www.abc.net.au/news/2019-06-04/man-receives-pacemaker-for-the-brain-to-combat-parkinsons/11173400

2. Lawyer Jim McNasby shares his DBS experience: https://www.healthline.com/health-news/this-man-with-parkinsons-experienced-improvement-after-trying-deep-brain-stimulation

3. This is not the normal type of story that’s I draw attention to, but I have to say, the origami crane display at the World Parkinson Congress was beautiful, and a fantastic artistic contribution to the event: http://www.rafu.com/2019/06/hope-is-in-the-fold-as-local-artists-travel-to-parkinsons-forum-in-japan/

Parkinson’s Exercise Programs in the News

Previous Week – June 2, 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/

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:

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