April 13, 2019 – Parkinson’s Weekly Update

Parkinson’s Disease features this week: World Parkinson’s Day awareness around the globe; boxing helps a husband get his wife back from Parkinson’s grip; bionic assistance for raising a middle finger as a PD salute; a young onset PD perspective on bucket lists; virtual reality training for balance; detecting early stage Parkinson’s with a selfie (and not just because the camera is shaking); people with Parkinson’s in the UK are tired of people thinking they are drunk; and more.

  1. Thursday, April 11 was World Parkinson’s Day 2019, a day on which various organizations try to draw public awareness to issues surrounding Parkinson’s Disease. Globally, a lot of attention was focused on drawing attention to the fact that Parkinson’s doesn’t just affect senior citizens, with news stories introducing us to younger people who are living with Parkinson’s Disease. Another recurring theme was that the number of people diagnosed with Parkinson’s is growing, and there is a shortage of qualified Movement Disorder Specialist (MDS) neurologists available for treatment, frequently taking months to get an appointment. We’ve got a review of awareness stories from around the world that caught our attention here:
  2. For World Parkinson’s Day, BioSpace published a great round-up of current scientific efforts to battle Parkinson’s Disease:
  3. A Salt Lake City TV station ran a great feature about a boxer at Rock Steady Boxing Wasatch Front in Utah. Brandi Ballantyne was diagnosed with Parkinson’s Disease 6 years ago. It’s hard not to get choked up when her husband Paul tells how thanks to boxing he got his wife back from Parkinson’s grip. She is now a Rock Steady Boxing coach leading classes to help others. http://parkinson.fit/forums/topic/rock-steady-boxing-helps-husband-get-wife-back/
  4. Researchers in Australia developed an intriguing new device that can diagnose Parkinson’s Disease by attaching to your hand and bending your middle finger. It’s called the BiRD for Bionics Institute Rigidity Device. We think this could inspire a new World Parkinson’s Day tradition. In addition to helping diagnose Parkinson’s, the BiRD offers a therapeutic benefit to patients by bionically assisting them in defiantly raising their middle finger at Parkinson’s Disease. http://parkinson.fit/forums/topic/possible-new-world-parkinsons-day-tradition-giving-pd-the-bird/
  5. On a similar note, what do you do when you’re diagnosed with Parkinson’s at 29? In 2013, Emma Lawton was diagnosed with PD and embraced the challenge. She did everything that previously scared her by swapping ‘no’ for ‘yes’ and expanding her world. She became a spokeswoman for her newfound ‘PD family’ and worked hard spreading awareness. In 2017 her neck muscles began to weaken and her head dropped. Getting around became difficult and her world that once expanded now shrunk to smaller than it had ever felt before. This year, she’s decided to invest some time in herself and her happiness, and ask why we reserve “bucket lists” for when someone knows they’re dying. She’s living life to the fullest this year, and she calls it “the f— it list”:
    https://www.thef—itlist.com and
  6. Researchers at the University of Utah are reporting early success with a new tool to help people with Parkinson’s disease improve their balance and potentially decrease falls with high-tech help: virtual reality. After practicing with a virtual reality system for six weeks, people with Parkinson’s disease demonstrated improved obstacle negotiation and balance along with more confidence navigating around obstacles in their path.

  7. Bizarre news out of Ireland, as tablets used to treat Parkinson’s disease have being packaged as Xanax sedatives and smuggled into Ireland for sale on the black market. In recent months there had been four major seizures of counterfeit Xanax. Each involved tens of thousands of tablets packaged as Xanax but were instead tablets used to treat Parkinson’s disease. Investigators are wondering “Is it people who are looking for a cheaper form of the drug and they think they are getting what they need cheaper? Or is it people who are looking to abuse [the drug]?”
  8. On World Parkinson’s Day, every major news outlet in the UK ran stories about people with Parkinson’s being wrongly accused of being drunk. While this may be a subject of embarrassment to those of us with PD, the message appears to have been successful in spreading awareness. Some of us are easily distracted, and our thoughts kept drifting to the late great master of the telecaster, Albert Collins, performing the blues classic “I Ain’t Drunk, I’m Just Drinkin’”. This song is begging to be reworked as an epic Parkinson’s anthem, “I Ain’t Drunk, I’m Just Thinkin’”…where instead of questioning how many drinks the singer has had, he is questioning how many carbidopa/levodopa tablets he has taken…as it can be so easy to lose count. Links to these UK news stories and a video of Albert Collins performing his politically incorrect drinking anthem:
  9. People with Parkinson’s in Burlington, Vermont showed off their dance moves as a flash mob to increase Parkinson’s awareness:
  10. Parkinson's SelfieCould Parkinson’s Disease be detected by a selfie? This seems like a rather cruel trick to me, as despite considerable advances in image stabilization technology, it can be quite a challenge to take a selfie when you have Parkinson’s! A teenager has created an app that requires only a camera equipped smartphone to detect Parkinson’s Disease using early-stage facial expression indicators. Initially developed and validated through two pilot studies, FacePrint is currently preparing for upcoming clinical trials with the Michael J. Fox Foundation and Stanford Medical School.
  11. A startup based at the University of South Australia in Adelaide is releasing an app to remotely assess Parkinson’s Disease progression. Used in conjunction with a smart mirror, the software uses AI to track movement and compares it with known Parkinson’s symptoms.
  12. Power for Parkinson’s in Austin Texas is promoting a new vigorous exercise class for people with Young Onset Parkinson’s Disease. https://www.kvue.com/video/news/health/free-exercise-class-by-power-for-parkinsons/269-40e9c93d-449e-4625-a7c5-089af14cc470
  13. Ever wondered why April 11 was chosen as World Parkinson’s Day, or why a red tulip is often used to symbolize the disease? This article from a health website in India is a great primer to prepare you for trivial pursuit questions about Parkinson’s: https://www.thehealthsite.com/diseases-conditions/world-parkinsons-disease-day-all-you-need-to-know/
  14. Rock Steady Boxing affiliates continued to promote awareness of the importance of exercise for people with Parkinson’s:

Previous Week – April 6, 2019

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