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. https://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. https://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

April 6, 2019 – Parkinson’s Weekly Update

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

We start by trying to make sense of the latest news reports about Vitamin B-12 and hereditary Parkinson’s. The research is very preliminary, but quite interesting when considered in conjunction with other recent studies. Next we ponder why researchers are giving fruit flies jet lag; see how PD progression can be measured with standard MRI equipment; learn why yelling at clouds may be a sign of a particular non-motor symptom of PD; watch local TV news stations participate in Parkinson’s Disease Awareness Month with coverage of a unique Parkinson’s exercise program in Austin, Texas, as well as 7 different Rock Steady Boxing affiliates; and more.

  1. Vitamin B-12A recent study identified Vitamin B-12 as being able to offer neuroprotection in hereditary Parkinson’s Disease associated with the LRKK2 gene. This was an animal study, so we don’t yet know how this applies to humans, but there are a few reasons why this could be significant for a wider audience of people with PD, and not just those with the LRKK2 gene. Did you know that having a low level of B-12 in early stages of PD is a good predictor that you will see a greater worsening of mobility as PD progresses? Or that B-12 deficiency can cause strange sensations, numbness, or tingling in the hands, legs, or feet? Learn more: https://parkinson.fit/forums/topic/making-sense-of-the-latest-news-about-vitamin-b-12-and-parkinsons/
  2. For Parkinson’s Disease Awareness month, Cleveland Clinic is feeding media outlets a ready-made story about the importance of exercise with Parkinson’s. It’s rather odd to see how they seed these stories to the media hoping someone will pick up the story, and how they include a video with awkward silent interludes to allow the local newscaster to insert a voiceover to ask questions of the expert. Still, we like the message from Dr. Benjamin Walters: “If you have early Parkinson’s, this is something that there’s a lot of data from supported by this and other studies – that show that exercising improves the outcome, may improve the progression of the disease and can improve symptoms and disability.” See behind the media curtain here: https://newsroom.clevelandclinic.org/2019/04/04/study-parkinsons-risk-lower-for-active-men/
    (The study being referred to is here: https://jamanetwork.com/journals/jamanetworkopen/fullarticle/2703129)
  3. This next study was ready for release on April 1, but they held it until April 2, so it would have a chance of being taken seriously. Researchers were stunned to discover that jet lag could stop Huntington’s Disease in fruit flies. I was stunned that they thought to check. But this quote from the lead researcher made me wonder what these scientists will think of next: “We essentially gave the flies jet lag for every day of their lives. It is like travelling four hours east every day.” I have so many questions about these frequent flyers! I know that fruit flies have a choice of airlines when they fly. Were there particular airlines whose aircraft interiors made the flies feel more like they were at home? Which airports and airport restaurants do fruit flies prefer? Read more: https://parkinson.fit/forums/topic/what-will-they-think-of-next-jet-lag-stops-huntingtons-disease-in-fruit-flies/
  4. The University of Florida department of Advancement published an interesting article on Parkinson’s Disease. The article focuses on researcher David Vaillancourt, and research study participant Gary Keating, brought together by a common goal to cure Parkinson’s, and a love for the game of basketball. Both have stories to tell that involve Parkinson’s. Vaillancourt led a team that used diffusion imaging, a type of MRI, to reveal that, over time, Parkinson’s patients lost vital dopamine neurons in the substantia nigra and gained more of a fluid known as free water. Keating, on the other hand, has had a prolonged personal experience with Parkinson’s Disease. A former basketball coach, Gary helped his father (also a basketball coach) battle PD for 14 years. Six months after his father’s death, Gary was diagnosed with young onset PD himself. 10 years later, he’s challenging PD with basketball therapy, and challenging the lead researcher of the study he participated in to a game of one-on-one. https://parkinson.fit/forums/topic/parkinsons-research-and-basketball-therapy-for-parkinsons/
  5. CBC News Canada has a great article and video about an Alexander Technique practitioner who is using the therapy to help people with Parkinson’s Disease. The Alexander Technique is a 100+ year old educational method that was created to retrain habitual patterns of movement and posture. By teaching how to change faulty postural habits, it claims to enable improved mobility, posture, performance and alertness, along with relief of chronic stiffness, tension and stress. People study the Technique for a variety of reasons. The most common is to relieve pain through learning better coordination of the musculoskeletal system. Another reason people take lessons in the Alexander Technique is to enhance performance. Athletes, singers, dancers, and musicians use the Technique to improve breathing, vocal production, and speed and accuracy of movement. https://www.cbc.ca/news/canada/edmonton/parkinson-s-candace-cox-actor-edmonton-1.5083075
  6. Michael J. Fox sat down with Fortune Magazine to discuss PD research and life with PD. Looking back, Fox said he has been surprised about two things as it relates to his disease. The first? “I didn’t realize we were starting with Kitty Hawk and we wanted to build a space shuttle,” he said with a smile. The second? “I’m still standing.” Watch the interview: http://fortune.com/2019/04/03/michael-j-fox-parkinsons/
  7. Yelling at clouds is one thing, but it’s another thing when you start taking pictures of clouds and posting them on social media with urgent messages about how they are symbols about the need to repent and get ready for the end of the world. Dan McFarland is sharing his experience to raise attention about a somewhat common non-motor symptom of advanced stage Parkinson’s, delusions and hallucinations. More on his story: http://www.imperialbeachnewsca.com/online_features/health_and_wellness/article_4c2415de-5e4b-50ff-aee6-02e31cbc6c67.html. This story includes a link to MoretoParkinsons.com, which the cynic in me sees as a promotional website for Nuplazid, a pharmaceutical drug used to treat these symptoms, which has been receiving increased FDA scrutiny. However, cynicism aside, it is worthwhile to educate yourself on warning signs to better recognize these symptoms.
  8. Research Brief: The New York Times published an interesting article on Klotho, a protein that appears to be associated with aging and brain function. It is being studied primarily in relation to Alzheimer’s, but may also be applicable to Parkinson’s Disease. https://www.nytimes.com/2019/04/02/health/klotho-brain-enhancement-dementia-alzheimers.html
  9. Research Brief: Researchers at Stanford blocked the CD22 protein in a mouse study, which restored the garbage-collecting performance of microglia that diminishes in aging brains. “The mice became smarter,” researcher Tony Wyss-Coray said. “Blocking CD22 on their microglia restored their cognitive function to the level of younger mice. CD22 is a new target we think can be exploited for treatment of neurodegenerative diseases.” http://med.stanford.edu/news/all-news/2019/04/blocking-proteins-activity-restores-cognition-in-old-mice.html
  10. CBS Austin offers an introduction to Power for Parkinsons, a unique Parkinson’s Fitness program offering free exercise, dance and singing classes. 13 weekly classes are available in the Austin Texas metro area. https://cbsaustin.com/features/we-are-austin/power-for-parkinsons-improving-quality-of-life-through-exercise-and-community
    Power for Parkinsons also has an extensive library of exercise videos for people with Parkinson’s Disease. https://www.youtube.com/channel/UC9QTes9SMZKbSzDS-nvhr3g/featured
  11. Parkinson’s Disease Awareness Month has encouraged a lot of local TV stations to do feature stories on Rock Steady Boxing affiliates around the United States. Here are a few that we noticed:

Previous Week – March 31, 2019

March 31, 2019 – Parkinson’s Weekly Update

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

Blame it on the Parkinson'sWe start by looking ahead to Parkinson’s Disease Awareness which starts on Monday by revisiting the funniest (and most relatable) Parkinson’s Disease awareness video of all time. We then realize that we may be personally too aware of PD, so we take a look at awareness months for other diseases and health issues. Next up we try to avoid the big gun debate while reporting on an intriguing case study of “gun therapy” for Parkinson’s; a hip-hop dance demonstration inspires one of the dancers to investigate repurposing a wearable designed for entertainment to help improve gait in PD patients; Fox Foundation commits $1 million to help a company build a PET tracer that can better map brain inflammation for future clinical trials; dolphins are developing Alzheimer’s in Florida; milk may increase Parkinson’s risk; dance therapy in Memphis; and rethinking music therapy.

    1. Parkinson’s Disease Awareness Month starts Monday, April 1. As April 1 is traditionally a day of laughs, I propose kicking off your PD awareness experience with the best and funniest (and most relatable) Parkinson’s Disease awareness video of all time, Mitch Faile’s “Blame it on the Parkinson’s”: https://parkinson.fit/blame-it-on-the-parkinsons/
    2. Who decides which disease or cause can lay claim to a month as its’ month of awareness? How did Parkinson’s Disease get April? It’s not that I don’t believe that PD deserves an awareness month, or that April doesn’t work for me. 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…we’ve collected a list of other awareness months here: https://parkinson.fit/parkinsons-awareness-month-is-a-time-to-look-outward-not-inward/
    3. Please put aside any preconceived thoughts on guns…whether you are pro “gun rights” or pro “gun control”, David Smith’s Parkinson’s Disease “gun therapy” is one of the most intriguing and inspirational PD stories of recent weeks. Diagnosed with Parkinson’s 8 years ago, David found nothing that would help with his tremors. He had always enjoyed shooting at the gun range, and would shoot at least every other week, sometimes more frequently. He realized that the activity was calming for his tremors, so he decided to do it more frequently. Now, he is in the big leagues…a professional shooter who has been chosen to be on the US team at the IPSC Rifle World Championship in Sweden this fall: https://parkinson.fit/forums/topic/competitive-shooter-uses-gun-therapy-to-help-manage-parkinsons/
    4. Two college professors in Buffalo (New York) collaborated to create a wearable device called Electroskip that creates music in response to dance and movement. The anticipated applications for the device were in arts and entertainment. To help demonstrate the device for a TEDx Talk, they enlisted the help of a hip-hop dance crew from their university. One of the dancers was in the process of completing a PhD in Physical Therapy, and recognized that the device may be useful for gait training improvements in Parkinson’s Disease. The company is now pivoting Electroskip toward more of a medical direction, and are currently seeking FDA approval as a medical device that helps people with walking disabilities. https://parkinson.fit/forums/topic/electroskip-device-straps-to-shoe-and-uses-auditory-cues-to-improve-gait/
    5. Inflazome received a grant of more than $1 million from the Michael J. Fox Foundation to fund the development of an NLRP3-specific Positron Emission Tomography (PET) tracer that allows non-invasive imaging of inflammasome-driven brain inflammation. Inflazome focuses on developing ways of blocking inflammasome signaling to eliminate unwanted inflammation. The NLPR3 inflammasome is believed to drive chronic inflammation linked to many neurodegenerative diseases, including Parkinson’s Disease. The PET tracer is designed to determine what dosages are needed for clinical trials. More details:  https://www.biospace.com/article/inflazome-funding-from-the-michael-j-fox-foundation-underlines-foundation-involvement-in-research/
    6. A long-term research study in Sweden concluded that people who drink 40ml (1.3oz) or more of milk per day were about 30% more likely to develop Parkinson’s Disease. By contrast, yogurt or soured milk was not found to cause any increased or decreased risk of developing Parkinson’s. Parkinson’s News Today provides more detail: https://parkinsonsnewstoday.com/2019/03/27/milk-linked-increased-risk-parkinsons-disease/
    7. The environmental toxin beta-methylamino-L-alanine (BMAA) has long been suspected of playing a role in some cases of neurological disorders. Hints about the potential health threat of BMAA date back to the aftermath of World War II in the remote Pacific island of Guam. U.S. Army physicians encountered an outbreak of a strange syndrome that the native people called lytico-bodig—the term lytico signifying paralysis and bodig dementia. Some victims had ALS-like symptoms, others exhibited the rigid posture of Parkinson’s disease, and still others displayed the mental fogginess typical of Alzheimer’s. A 2011 article in Discover Magazine asked “Are Toxins in Seafood Causing ALS, Alzheimer’s, and Parkinson’s?” and pointed to concerns that BMAA was being produced by blue-green algae.
      Now, in an alarming new study that has implications for people living along the Florida coast, scientists have discovered that dolphins there appear to be suffering from a condition similar to Alzheimer’s disease caused by BMAA toxins from common algae. University of Miami researchers examined the brains of 14 dolphins, some of which had beached themselves. Half of the marine mammals were found stranded in areas with frequent harmful algal blooms: the Banana River, Indian River Lagoon, the Atlantic Ocean, and the Gulf of Mexico. Thirteen of the dolphins’ brains had excessive levels of BMAA.  The University of Miami research report was published in PLOS One. More details at https://parkinson.fit/forums/topic/algae-toxin-dolphin-alzheimers/
    8. Are you curious about dance programs for Parkinson’s Disease? WREG News Channel 3 in Memphis pays a visit to the Dance for PD class at Ballet Memphis: https://www.facebook.com/parkinsonfit/posts/2325431524405986https://www.facebook.com/parkinsonfit/posts/2325431524405986
    9. Existing music therapy for Parkinson’s Disease helps people, but to me, it seems more geared to my grandfather’s generation. Wired Magazine has an interesting video titled “How Does Music Affect Your Brain? Every Imaginable Way” https://www.wired.com/story/tech-effects-how-does-music-affect-your-brain/.
      Meanwhile, Tomas Matthews, a PhD candidate at Concordia University in Montreal, is researching how brain regions involved in the different aspects of musical groove interact: http://theconversation.com/groovy-findings-researching-how-and-why-music-moves-you-112959.
      We don’t want to overthink it, because we know a good tune when we hear it. But, we do think it’s time to rethink music therapy, and give it a rock and roll transfusion: https://parkinson.fit/forums/topic/rethinking-music-therapy-for-parkinsons-disease/

Previous Week – March 23, 2019

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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