This week’s newsletter is a bit brief, because half of the world is on holiday, and the other half is binge watching the latest season of Stranger Things on Netflix. (We won’t tell you how it ends, but we’re willing to wager that it ends with a teaser for the next season.)
We used some of the downtime this week to clean up and improve the Parkinson FIT website. It is still very much a work in progress, but we’ve improved some of the ways that information is categorized on the website. We’ve added top-level categories for stories of inspiration and humor. And we’re working on better organizing links to interesting videos. Take a look at https://parkinson.fit to see what we’ve been up to.
Our mission is to build a website that inspires current and future people with Parkinson’s to achieve a higher quality of life, primarily by promoting exercise, active lifestyles and provoking thought. Simply put, our goals are to educate, inspire, motivate and entertain. And we could use your help.
Have you created an article, presentation or video that would be of interest to people with Parkinson’s, their families, or caregivers? Did you read an article or watch a video that educated, inspired, motivated or entertained you?
Let us know if you can help. Thanks!
Here’s a quick run down of what you might have missed last week:
This latest Parkinson’s Disease research is too important not to be shared. Published in the European Journal of Neurology, a new study indicates that an active sex life is linked with lower disability and better quality of life in men with early Parkinson’s disease. Yes, it appears that sexercise is medicine. More study is needed, but word on the street is that volunteers are afraid they’ll end up in the placebo group. http://parkinson.fit/active-sex-life-may-benefit-men-with-early-parkinsons-disease/
On a more serious note, Psychology Today has an interesting article exploring Parkinson’s Disease as possibly being a metabolic disorder. I’d be a little cautious about the ketogenic (keto) diet as a solution, however, because the detailed results of the study mentioned raise significant concerns that are ignored by the summary of results. (A very significant number of keto diet participants in the study experienced periods of increased tremor. And a few participants of this small study dropped out because of the issue. The study author dismissed this as the somewhat common “keto flu” that people can temporarily experience when adapting to this diet. That is probably true, but in my opinion, this is definitely a serious caution flag, and is far more significant than the questionable non-motor symptom improvements detailed in the study.)
Every month, the Science of Parkinson’s website does a round-up of the past month’s Parkinson’s related research. Linkage between the brain and the gut was a very common theme in June. Read more at: https://scienceofparkinsons.com/2019/06/30/june-2019/
Frank Church draws attention to concerning case studies of dopamine agonist medications potentially causing hair loss, particularly with women. These are just case studies, and not documented as widespread problems, but this is a potential side effect to be on the watch for: https://journeywithparkinsons.com/2019/07/05/brief-report-hair-loss-linked-to-dopamine-agonists/
Damaged olfactory neurons as a result of air pollution may contribute to altered cerebrospinal fluid flow and turnover, acting as a potential mechanism for the development of neurodegenerative diseases. Penn State researchers looked at how cerebrospinal fluid, the liquid that flows around the brain and spinal cord, flows out through the nose, and what happens when the flow of fluid is stopped. https://news.psu.edu/story/579374/2019/07/01/research/sense-smell-pollution-and-neurological-disease-connection-explored
Researchers believe they are getting close to a saliva test that can more quickly diagnose early Parkinson’s Disease, before any motor symptoms are present, by focusing on identifying bacteria in the oral microbiome: https://www.prnewswire.com/news-releases/new-research-shows-link-between-parkinsons-disease-and-the-microbiome-300878594.html
Parkinson’s Life has a feature interview with UK veteran journalist and BBC technology correspondent Rory Cellan-Jones, who recently went public about his Parkinson’s diagnosis. He discusses how his diagnosis ‘landed him in a strange place’, explains how he was encouraged to seek medical help by a concerned viewer – and shares the difficulties of keeping his symptoms under wraps while live on air: https://parkinsonslife.eu/rory-cellan-jones/
More Parkinson’s researchers are joining the “open science” movement to encourage sharing and collaboration: http://theconversation.com/to-cure-brain-diseases-neuroscientists-must-collaborate-thats-why-im-giving-my-data-away-118672
When the Parkinson’s meds wear off, we struggle. There’s a reason they recommend exercising when your medication is working and you are “on”. But, Gavin Mogan also enjoys challenging his body when the meds wear off. In his role of Defensive Coordinator, and defending himself from Parkinson’s, he analyzes game tapes of his “off periods”. http://parkinson.fit/oddities-and-opportunities-in-movement-during-parkinsons-off-periods/
On the lighter side, have you ever heard of semantic fluency? Can You Name 38 Vegetables in One Minute? Some fancy pants researcher from King’s College in London is trying to “brain shame” us … all because we can’t name 38 vegetables in one minute. Do I look like I work in the produce department? I’m supposed to be able to name 38 vegetables in one minute? Madness, I say. But let’s see how far we can ride this train of thought before it runs off the tracks: