Parkinson’s Awareness Month is a time to look outward, not inward

Who decides which disease or cause can lay claim to a month as an awareness month? I’m just curious, because we’re about to enter April, which for some reason is Parkinson’s Disease Awareness Month.

It’s not that I don’t believe that PD deserves an awareness month. My issue is that I feel like a hypocrite. I am so aware of Parkinson’s Disease, that I have been completely unaware of awareness months for any other diseases or causes in the past year.

Therefore, I think there is no better way for those of us with PD to start Parkinson’s Disease Awareness Month than to raise our awareness of other diseases and health concerns. Take this opportunity to learn about challenges that others are facing; learn about prevention and health screening for other health ailments; and consider also supporting organizations that devote themselves to worthwhile causes. 
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March 23, 2019 – Parkinson’s Weekly Update

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

In completely made-up financial news, button industry stocks were down sharply after the Michael J. Fox Foundation announced a button boycott, as part of new initiative to tell the world to stop making products that people with Parkinson’s hate. Find out what industry is the next target in our exclusive special report. Also featured this week:

  • “I love the smell of Parkinson’s in the morning!” The woman who can smell Parkinson’s is back in the news, with research study results confirming that a unique odor is associated with concentrations of certain chemicals on the skin of people with Parkinson’s (honestly, we are not making this up);
  • The World Parkinson Congress has selected their top 12 Parkinson’s videos in a competition for this year’s conference, and you have an opportunity to vote for a favorite in the WPC’s “People’s Choice Award”;
  • A surgeon in China performed a Deep Brain Stimulation surgery over a 5G network from 1,800 miles away to avoid ever having to be face-to-face with his patient;
  • A Harvard study links vigorous exercise and fasting with a chemical trigger that induces a cellular process resulting in the elimination of excess or waste proteins;
  • See what non-motor symptoms of PD you might be missing out on with this handy reference guide;
  • Watch our video that highlights strength training exercises to target tremor prone muscles focusing on the forearm, wrist and grip;
  • Plus, we’re always on the lookout for news stories that help educate the public about Parkinson’s Disease exercise programs . This week, these stories take us to Rock Steady Boxing affiliates in Toronto, Asheville NC, Huntsville AL and North Attleboro MA, and an inspiring independent boxing gym in Salmon Arm, British Columbia.
  1. In completely made-up financial news, button industry stocks were down sharply after the Michael J. Fox Foundation announced a boycott of all clothing with buttons, as part of new initiative to tell the world to stop making products that people with Parkinson’s loathe and detest. Anticipating further boycotts, portfolio managers are telling investors to also divest of shoelace stocks, and to invest heavily in protest buttons and velcro. A foundation spokesperson issued a warning of future activism: “Squishy water bottles…those ones that  are impossible to open without spilling water all over yourself…which makes it look like you wet yourself…you’re next! People with Parkinson’s are mad as hell, and we’re not going to take it any more!” Of course, this story is a complete fabrication, but the hatred…oh, it’s real…and it’s festering…festering like a boil…manufacturers of buttons and squishy water bottles, your day of reckoning draws nigh. Retribution will be swift! This is all a long wind up for our song of the week…a Parkinson’s inspired ditty…“Buttons Kick My ***”. https://parkinson.fit/forums/topic/thing-we-hate-buttons-shoelaces-and-squishy-water-bottles/
  2. Fee-fi-fo-fum, this woman can smell the musky smell of Parkinson’s. (This is a rerun, but it’s back because the official study results have been released.) 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 followed the scent in search of biomarkers that can be used for early detection. While there is still no cure for Parkinson’s, early detection may help researchers discover how the disease begins. And those diagnosed early may be able to benefit from earlier exercise intervention to better preserve motor function. This story is an improbable journey…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.  https://parkinson.fit/forums/topic/the-woman-who-can-smell-parkinsons-why-you-have-dandruff-and-biomarkers/
    Also recommended, additional detailed coverage from the Science of Parkinson’s website: https://scienceofparkinsons.com/2019/03/20/smell/
  3. The World Parkinson Congress takes place every 3 years. This year it will be in Kyoto, Japan from June 4-7, 2019. There is a video competition, where people with Parkinson’s create videos to increase PD awareness. The top 12 videos have been selected, and you have an opportunity to watch them and vote for a favorite in the WPC’s “People’s Choice Award”: https://parkinson.fit/world-parkinson-congress-2019-video-competition/
  4. People in China apparently don’t have to put up with the likes of Verizon or AT&T.  A surgeon in China performed Deep Brain Stimulation (DBS) surgery remotely over a 5G network on a patient with Parkinson’s Disease who was over 1,800 miles a way. Unfortunately, the surgeon went over his data allowance, and he has to perform three more surgeries to pay off the overage charges. https://www.dailymail.co.uk/health/article-6821613/Surgeon-performs-world-remote-brain-surgery-patient-1-800-MILES-AWAY.html
  5. Psychology Today published an intriguing article “Exercise and Fasting Linked to Brain Detox”, which provides a layman’s explanation of a recent Harvard research study “26S Proteasomes are rapidly activated by diverse hormones and physiological states that raise cAMP and cause Rpn6 phosphorylation”. (With a title like that, you know the study is a real page turner!) The Harvard study showed that both fasting and vigorous exercise significantly increased the levels of cAMP, a chemical trigger that induces a cellular process resulting in the elimination of excess or waste proteins. This is interesting because Parkinson’s and other neurodegenerative diseases are linked to excess accumulation of misfolded proteins. More research is obviously required, but intermittent fasting might not be such a crazy idea after all: https://parkinson.fit/forums/topic/why-i-am-experimenting-with-intermittent-fasting-to-see-if-it-helps-parkinsons/#post-106523
  6. The Parkinson’s Foundation published a web page detailing common non-motor symptoms of Parkinson’s. The list is so long, we’re confident that you don’t have them all. So take solace in looking over the list, and realizing that things could be worse. (Seriously, it’s quite an interesting list.)  https://parkinson.org/blog/tips/Non-motor-Symptoms-Whats-New-Part-1
  7. Back at Parkinson.FIT HQ, we produced a video highlighting strength training exercises for the forearm, wrist and grip, in an effort to target tremor-prone muscles that are frequently overlooked in workouts. https://parkinson.fit/strength-training-for-pd-forearm-wrist-and-grip/
  8. Finally, we’re always on the lookout for news stories that help educate the public about Parkinson’s Disease exercise programs .

Previous Week – March 16, 2019

Strength Training for PD: Forearm, Wrist and Grip

Most of us have tremors in our lower arm and wrist. In this video, we discuss strength training exercises targeting the forearm, wrist and grip … simple low intensity exercises that are a great way to start the day.

The equipment used in this video:

TheraBand FlexBar – https://www.amazon.com/TheraBand-Tendonitis-Strength-Resistance-Tendinitis/dp/B000KGOMBC/

Grip Strengthener: https://www.amazon.com/ADMA-Strengthener-Adjustable-Resistance-Rehabilitation/dp/B07DB2QL6M/

Bowflex SelectTech Adjustable Dumbbells – https://www.amazon.com/Bowflex-SelectTech-Adjustable-Dumbbells-Pair/dp/B001ARYU58/

How Much Should I Exercise for Parkinson’s Disease? (Video + Presentation)

We’ve created a PowerPoint video presentation detailing exercise recommendations and related research for people with Parkinson’s Disease.

The presentation slides can be viewed interactively below:


 

The presentation slides can be downloaded by clicking on the image below:

 

March 16, 2019 – Parkinson’s Weekly Update

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

A couple of friends commented to me that last week’s newsletter was a bit depressing, particularly the lead story. So this week, we’ve added extra snark factor to our topic introductions…and our lead story is a fluff piece that serves no purpose other than to make you laugh. The lead story arrives courtesy of a TV comedy writer who, after his PD diagnosis, decided to give stand-up comedy a go. Also featured this week:

  • a deep dive into the decidedly low tech sorting hat test by which neurologists determine if you’re a Gryffindor, Ravenclaw, Hufflepuff, Slytherin or Parkinson;
  • more on those Tasmanian devils wearing red light buckets on their heads for Parkinson’s;
  • stabilizing spoons that we don’t need because soup and cereal are overrated;
  • a proposal to open a casino to leverage dopamine agonist fueled gambling addiction as a way of funding PD research;
  • wicked beards and the unexpected placebo effect of volunteerism;
  • a silly hospital name in India;
  • why breakfast might not be the most important meal of the day;
  • and a multicolored assortment of research newsbriefs with elastic waistbands.
  1. Paul Mayhew-Archer is a UK comedy writer best known for his work on “The Vicar of Dibley” and “Mrs Brown’s Boys”. Since his diagnosis with Parkinson’s Disease in 2011, he’s been looking at the funny side of life with Parkinson’s, performing stand-up comedy, and is currently touring the UK in his one man show, “Incurable Optimist”. Enjoy a few of his humorous takes on PD here: https://parkinson.fit/forums/topic/comedy-writer-paul-mayhew-archer-looks-at-the-funny-side-of-life-with-pd/
  2. The Science of Parkinson’s (SoP) website has an insightful article on the Unified Parkinson’s Disease Rating Scale (or UPDRS), which you may remember as the silly test in which you were asked to touch your nose, pinch your fingers together, and walk around the room, before the neurologist concluded that you have Parkinson’s Disease.  UPDRS is how PD is clinically diagnosed and how disease severity is measured. SoP does their usual bang up job of explaining the history of the test, known limitations, and possible future direction. (We think a Hogwarts style sorting hat is what researchers should aim for.) https://scienceofparkinsons.com/2019/03/06/updrs/
  3. Research Newsbrief: The Parkinson’s Foundation sees hope in a small study in Sweden, looking at a new drug IRL790 that shows promise for reducing levodopa induced dyskinesia, which is a significant quality of life concern for longtime Parkinson’s sufferers who experience involuntary rapid jerking and twisting, or slow and extended muscle spasms. More details here: https://parkinson.org/blog/science-news/New-Drug-Shows-Promise-for-Levodopa-Induced-Dyskinesia
  4. It seems that people with Parkinson’s know a good fashion trend when they see one. The story about the group of Parkinson’s patients in Tasmania (Australia) wearing red light buckets on their head to help with Parkinson’s symptoms has consistently been one of the most sought after stories on our website in recent weeks. The treatment is known as photobiomodulation. It is experimental and unproven. For those who are interested, we’ve tracked down the bucket hat creator, who has released DIY instructions so that you can build your own red light bucket hat. More details and the intriguing backstory here: https://parkinson.fit/forums/topic/wearing-a-red-light-bucket-on-your-head-for-parkinsons/#post-104296
  5. I’m not in the market for a stabilizing spoon yet, but I found this round up and review of adaptive tableware interesting: https://heavy.com/health/2019/03/stabilizing-spoon/
  6. Research Newsbrief: While the phase 2 clinical trial of the repurposed cancer/leukemia drug nilotinib continues at Georgetown University, researchers have released a paper describing how they believe the drug works in fighting Parkinson’s. In a press release, the study’s senior author, Charbel Moussa says, “We detect the drug in the brain producing multiple effects, including improving dopamine metabolism — reducing both inflammation and toxic alpha-synuclein. This is unprecedented for any drug now used to treat Parkinson’s disease.” The trial still has another year to run, so we have awhile left to wait to find out if patients in the trial see meaningful results. More details here: https://www.eurekalert.org/pub_releases/2019-03/gumc-rdh030819.php
  7. Recently, we sarcastically noted that dopamine agonists (such as mirapex/pramipexole and requip/ropinirole) are a category of drugs that have a surprising efficacy in destroying lives. A 5 year study found that 46% of PD patients that were prescribed a dopamine agonist developed impulse control disorders, including gambling addiction, hypersexuality and porn addiction. After reading a case study about a woman with PD who gambled away $1 million over the course of 2-1/2 years after being prescribed pramipexole, we could not help but wonder if we should build a casino to raise funds for Parkinson’s Disease research. At least in our casino, these funds could have been put to good use! We jest, but only to increase awareness of this problem. https://parkinson.fit/forums/topic/parkinsons-disease-casino/
  8. There is an interesting argument for how the action of volunteering and fund raising for PD research not only helps enable research that will benefit Parkinson’s patients in the future, but can also improve your Parkinson’s symptoms today. We call this the unexpected placebo effect of volunteerism. The essay is an exploration of dopamine, placebo effect, and the psychological side of dopamine. Along the way, we learn about anticipation, delayed gratification, and meet a brilliant neuroscientist with a wicked beard: https://parkinson.fit/forums/topic/the-unexpected-placebo-effect-of-pd-volunteerism/
  9. The Parkinson’s community in India was in a tizzy over a video posted on Facebook by Nanavati Super Specialty Hospital (yes, that is the hospital’s real name)  that showed “miracle” results of an apomorphine infusion on a 50-year old patient with advanced Parkinson’s Disease. After complaints from the Movement Disorders Society of India, the hospital removed the video. There’s no miracle, and this is a sad reminder  that many Parkinson’s sufferers are under medicated. https://parkinson.fit/forums/topic/mumbai-hospital-viral-video-gives-impression-of-miracle-drug-for-parkinsons/
  10. Research Newsbrief: Researchers at Iowa State University have determined the biological process through which too much exposure to the metal manganese causes Parkinson’s symptoms, triggered by the way that manganese binds to the alpha-synuclein protein. More info: https://www.news.iastate.edu/news/2019/03/12/manganeseparkinsons
  11. This editor decided to begin an experiment with intermittent fasting (specifically time restricted feeding) to see if it might personally help Parkinson’s symptoms. It goes against almost everything I’ve ever been taught about nutrition. There are many reasons why this may not be a good idea, but some people might be curious why someone who appears to have at least reasonable intelligence would consider such a crazy idea: https://parkinson.fit/forums/topic/why-i-am-experimenting-with-intermittent-fasting-to-see-if-it-helps-parkinsons/
  12. Research Newsbrief: Scientists at Imperial College in London believe they are getting closer to understand how Deep Brain Stimulation (DBS) works to improve Parkinson’s symptoms. Yes, you read that right, DBS has been around for 20-some years, “But despite the success of the treatment, we still don’t know exactly how delivering electric pulses to brain cells creates these beneficial effects,” according to the senior author of the study, who continues, “Our results, despite being at an early-stage, suggest the electric pulses boost batteries in the brain cells. This potentially opens avenues for exploring how to replicate this cell power-up with non-surgical treatments, without the need for implanting electrodes in the brain.” More insight here: https://eurekalert.org/pub_releases/2019-03/icl-ptd031119.php

Previous Week – March 9, 2019