April 28, 2019 – Parkinson’s Weekly Update

Weekly Update – Spine tingling implants help restore walking ability for housebound patients; young blood infusions aren’t just for vampires any more; brain implants decode and synthesize speech; a health insurer includes coverage for a Parkinson’s Boxing program; Deep Brain Stimulation info;  top Parkinson’s blogs; UK GDNF Trial Follow-up; Parkinson’s exercise programs in the news last week; and more.

This is a round-up of Parkinson’s Disease news and information that caught our attention last week.

Spine tingling implants help restore walking ability for housebound patients; young blood infusions aren’t just for vampires any more; brain implants decode and synthesize speech; a health insurer includes coverage for a Parkinson’s Boxing program; Deep Brain Stimulation info;  top Parkinson’s blogs; UK GDNF Trial Follow-up; Parkinson’s exercise programs in the news last week; and more.

Spine Tingling Implants Restore Walking Ability for Housebound Parkinson’s Patients

A BBC news article drew considerable attention with its clickbait headline: Parkinson’s results beyond researchers’ wildest dreams. It’s an interesting story about two housebound patients with advanced stage Parkinson’s Disease who received a treatment that helped restore their walking ability. These patients are part of a small study of 5 patients at London Ontario’s Western University who had electrodes implanted in their spine. Delivering electrical pulses into the spine appears to be delivering walking impairments that can be all but impossible to treat otherwise.  The team thinks their device works by boosting signals between the spinal cord and the brain. When we walk, our brains send instructions to our limbs allowing us to move. The spinal cord then sends a message back to the brain to confirm that the action has been carried out. Parkinson’s appears to disrupt this signal, restricting our ability to walk properly.  Reports from the original study were published last year, but this latest news coverage is focused on continued improvement in two of the patients. The BBC News report is here: https://www.bbc.com/news/health-47803496.

A more detailed report on the treatment is found in Canada’s National Post: https://nationalpost.com/health/electrical-jolts-to-the-spine-transform-lives-of-parkinsons-patients-in-canadian-led-experiments

IFL Science also has good coverage of the story:
https://www.iflscience.com/health-and-medicine/patients-with-severe-parkinsons-walk-again-thanks-to-electrical-spine-implants/

Brain Implants Translate Brain Activity Directly Into Speech

Scientists at the University of California San Francisco (UCSF) have developed a decoder that can translate brain activity directly into speech. “For the first time we can generate entire spoken sentences based on an individual’s brain activity,” said Edward Chang, senior author of the study. Speech synthesisers, like the one used by the late Stephen Hawking, typically involve spelling out words letter-by-letter using eye or facial muscle movements. They allow people to say about eight words a minute, compared with natural speech, which averages 100-150 words per minute. Previous attempts to artificially translate brain activity into speech have mostly focused on unravelling how speech sounds are represented in the brain, and have had limited success. Chang and his colleagues tried something different. They targeted the brain areas that send the instructions needed to coordinate the sequence of movements of the tongue, lips, jaw and throat during speech. NBC News coverage:
https://www.nbcnews.com/mach/science/scientists-turn-brain-signals-speech-help-ai-ncna998551

The Guardian coverage:
https://www.theguardian.com/science/2019/apr/24/scientists-create-decoder-to-turn-brain-activity-into-speech-parkinsons-als-throat-cancer

Will Health Insurance Pay For Parkinson’s Boxing?

A former US Congressman and college president in Buffalo, New York, Jack Quinn, publicly shared his Parkinson’s diagnosis. As a well known figure in Buffalo, his story is drawing considerable attention to a local Parkinson’s boxing program. But the most intriguing part of this story is a health insurance angle. Jack Quinn was involved in talks with Independent Health, a Buffalo based insurer, which recently agreed to cover the program with a small co-pay. This is a big deal. For people with Parkinson’s, exercise is as important as (if not more important than) medication. But the costs for people on fixed income can discourage participation in Parkinson’s fitness programs. Some insurers do provide partial reimbursement for gym membership fees, but have been limited to full service gyms. On a related note, this year Blue Cross Blue Shield of Massachusetts added kickboxing programs as being eligible for a participation reimbursement of up to $150. That’s not enough to cover most programs, but it’s helpful. BCBS Massachusetts fitness reimbursement:
http://www.bu.edu/hr/documents/BCBS_Fitness_Reimbursement_Form.pdf

More on Jack Quinn and Parkinson’s Boxing in Buffalo:

Outrunning Parkinson’s Disease at the Boston Marathon

When it comes to running, no event is more prestigious than the Boston Marathon. This year’s Boston Marathon finishers included at least two people with Parkinson’s Disease (and one extremely supportive spouse), who are inspiring us to challenge the limitations of Parkinson’s Disease. Michael Quaglia was diagnosed with PD 13 years ago, and describes his PD strategy like this: “The way I have been fighting this thing is I exercise like crazy.” Read more: https://parkinson.fit/forums/topic/outrunning-parkinsons-at-the-boston-marathon-2019/

Young Blood Plasma for Parkinson’s Research

Young blood infusions aren’t just for vampires any more. It seems like something out of a Simpsons episode, but back in February, the FDA issued a warning to would be vampires against so-called “young blood plasma” infusions, where infusions of plasma from young donors (18-25 years old) is being promoted to treat the effects of a variety of conditions, including Parkinson’s Disease. The FDA statement, in part, said “Simply put, we’re concerned that some patients are being preyed upon by unscrupulous actors touting treatments of plasma from young donors as cures and remedies. Such treatments have no proven clinical benefits for the uses for which these clinics are advertising them and are potentially harmful.“ The FDA stressed “The administration of plasma for indications other than those recognized or approved by the FDA should be performed by a qualified investigator or sponsor who has an active Investigational New Drug (IND) application with the FDA.”

The excitement about young blood plasma was fueled by a phase 1 study at Stanford that looked at it as a potential treatment for Alzheimer’s:
https://stanmed.stanford.edu/2018winter/clinical-trial-finds-blood-plasma-from-young-donors-promising-for-Alzheimers.html.

There is currently a related clinical trial on young blood plasma infusion and Parkinson’s being run by Alkahest, which has received funding from the Michael J. Fox Foundation. Additional details here:
https://scienceofparkinsons.com/2018/12/26/alkahest/

There apparently is another small study in Houston, the Young Plasma Study (https://www.youngplasmastudy.com), which has just released promising results, documenting patient conditions  3 months after treatment with young plasma infusion. The press release claims “With all patients continuing to be maintained on their pre-investigation treatments, critical disease-conditions such as muscle twitches (dyskinesia), facial expression, speech, handwriting, rigidity and falling, all show improvement directly attributable to the yFFP.” (yFFP = young fresh frozen plasma)

Press release:
https://www.prnewswire.com/news-releases/young-blood-plasma-parkinsons-disease-investigation-three-month-results-show-dramatic-improvements-in-every-neurological-assessment-category-300837311.html

3 month outcome: https://docs.wixstatic.com/ugd/3e0a14_ea1b78f3658442eda9ac68c830b2ec1f.pdf

Local news report: http://www.fox26houston.com/health/plasma-showing-promising-results-in-slowing-parkinson-s-and-ms

Deep Brain Stimulation Information

The Davis Phinney Foundation held a webinar on DBS, and published a page with helpful information for those considering the procedure:
https://www.davisphinneyfoundation.org/blog/webinar-recording-the-what-when-why-how-of-deep-brain-stimulation-with-dr-kara-beasley/

A small town Idaho newspaper shares how DBS has profoundly affected the life of a local resident: https://www.bonnercountydailybee.com/local_news/20190427/surgery_gives_sagle_man_a_second_chance

UK GDNF Trial Follow-up

Parkinson’s Life followed up with 3 of the participants of the UK GDNF trial who were featured on the BBC documentary. They discuss experience in the trial, as well as experiences since the trial. https://parkinsonslife.eu/gdnf-trial-a-miracle-cure/

Top Parkinson’s Blogs

Parkinson FIT was featured in a collection of top Parkinson’s blogs chosen by MyTherapyApp. While it is great to be included in these lists, I’m always more interested in seeing what other blogs I might be missing. https://www.mytherapyapp.com/blog/top-parkinsons-blogs

Parkinson’s Programs in the News

Buffalo, New York – Parkinson’s Boxing: https://www.wivb.com/news/local-news/jack-quinn-fights-parkinson-s-disease-by-boxing/1947517485

West Union, South Carolina – Rock Steady Boxing: https://www.wspa.com/news/new-boxing-gym-in-oconee-co-helping-people-with-parkinson-s-disease/1953937639

Kingsport, Tennessee – Pedaling for Parkinson’s: https://wcyb.com/news/tennessee-news/kingsport-ymca-pedaling-against-parkinsons

Cape Elizabeth, Maine – Rock Steady Boxing: https://www.press herald.com/2019/04/21/boxing-to-combat-parkinsons-disease/

Raleigh, North Carolina – Rock Steady Boxing: https://abc11.com/health/77-year-old-raleigh-man-gives-parkinsons-a-one-two-punch-/5274143/

Montgomery, Alabama – Rock Steady Boxing: https://www.montgomeryadvertiser.com/story/news/2019/04/25/how-one-montgomery-gym-fighting-progression-parkinsons-through-boxing-metro-fitness-rock-steady-al/3435959002/

Briefly Noted

Boston Celtics basketball legend John Havlicek passed away at the age of 79. Friends say Havlicek had suffered from an aggressive strain of Parkinson’s Disease for approximately three years, and recently took a turn for the worse. https://www.bostonherald.com/2019/04/25/celtics-great-john-havlicek-dead-at-79/

Linda Ronstadt: The Sound of My Voice” documentary premiered at the Tribeca Film Festival. The documentary profiles the 10-time Grammy winning superstar whose career was tragically cut short by Parkinson’s disease. https://www.hollywoodreporter.com/review/linda-ronstadt-sound-my-voice-1205347

Parkinson Voice Project’s Speech and Swallowing Therapy Program Goes Global. Programs Speak Out! and its follow-up, Loud Crowd, are now available in all 50 U.S. states and 13 countries. https://parkinsonsnewstoday.com/2019/04/23/parkinsons-speech-swallowing-therapy-program-going-global/

The Parkinson’s Society of Singapore held an awareness event highlighting people with Parkinson’s who lead an active lifestyle and set an example for others. https://www.channelnewsasia.com/news/singapore/why-parkinson-s-disease-should-not-prevent-patients-from-keeping-11484372

Previous Week – April 21, 2019

April 21, 2019 – Parkinson’s Weekly Update

Major Tom to Ground Control … this week’s report comes from  somewhere over the North Atlantic Ocean at an altitude of 36,000 feet, where we are currently testing air turbulence therapy for Parkinson’s Disease … so apologies in advance for any and all typos.

In an otherwise slow holiday week, University of Cambridge researchers are suggesting that an existing high blood pressure medication, felodipine, might be repurposed to treat Parkinson’s Disease. This study reminds me of another high blood pressure medication, isradipine, also a calcium channel blocker, which saw positive results in an animal model study 12 years ago. Since then, research has progressed considerably. Researchers have recently completed a 3 year phase 3 study of isradipine, and these latest results are expected to be published within the next 2-3 weeks. This study might bring good news to those with early stage PD: https://parkinson.fit/forums/topic/isradipine-phase-3-study-results-expected-soon/

Deep Brain Stimulation (DBS) is an amazing quality of life improvement for people with tremor dominant Parkinson’s. This video clip from Irish television, where someone who has had DBS surgery switches the stimulator off and then back on, is a great example of how significant this treatment can be:
https://www.joe.ie/fitness-health/watch-irish-parkinsons-patient-demonstrates-dramatic-effects-deep-brain-stimulation-665649
More on DBS from the Davis Phinney Foundation:
https://www.davisphinneyfoundation.org/blog/life-before-after-deep-brain-stimulation-dbs-with-brendan-cain/

Jimmy Choi was diagnosed with young onset Parkinson’s Disease 16 years ago at the age of 27. Now 43, he has embraced intense exercise and for the past couple years has shown off his ninja skills competing on the TV show “American Ninja Warrior”: https://www.dailyherald.com/news/20190416/parkinsons-diagnosis-now-drives-american-ninja-warrior–

Parkinson’s Awareness Month trivia: Parkinson’s Disease is named after Dr. James Parkinson, the first doctor of western medicine to study the condition, having written an essay in 1817: https://parkinsonslife.eu/james-parkinson-the-man-behind-the-shaking-palsy/

Local news coverage of Parkinson’s Disease programs:

Bangor, Maine – Husson University students run a boxing program for people with Parkinson’s: https://www.wabi.tv/content/news/Husson-students-throw-punch-in-fight-against-Parkinsons-disease-508585501.html

West Lafayette, Indiana (Rock Steady Boxing) – https://www.wlfi.com/content/news/Packing-a-punch-against-Parkinsons-Disease-508721981.html

Ottumwa, Iowa (Rock Steady Boxing) – https://www.kyoutv.com/home/2019/04/17/ymca-teaches-boxing-class-to-fight-parkinsons-disease/

Tucson, Arizona (Parkinson’s Wellness Recovery/PWR) – https://www.kgun9.com/news/local-news/one-of-a-kind-gym-in-tucson-is-helping-people-with-parkinsons-improve-daily-life

Seattle, Washington (Dance for Parkinson’s) – https://q13fox.com/2019/04/17/healthy-living-dance-class-helps-people-living-with-parkinsons-disease/

In the above report they talk to Nan Little, author of a fantastic PD journey book, “If I Can Climb Mt. Kilimanjaro, Why Can’t I Brush My Teeth?: Courage, Tenacity & Love Meet Parkinson’s Disease”: https://www.amazon.com/Climb-Kilimanjaro-Cant-Brush-Teeth-ebook/dp/B01DAVSAWK/

Rutgers University offers a dance program for Parkinson’s: http://btn.com/2019/04/19/a-rutgers-program-gets-parkinsons-patients-to-boogie-down-btn-livebig/

The Los Angeles Times published a feature article on The Parkinson Voice Project and their Loud Crowd therapy: https://www.latimes.com/local/orangecounty/tn-wknd-et-parkinsons-speech-loud-crowd-los-alamitos-20190418-story.html

Upcoming Events:

The World Parkinson Congress is held every 3 years, bringing together researchers, health professionals and people with Parkinson’s Disease. This year it will be held in Kyoto Japan from June 4-7. If you’re going to the conference, and would like to meet up, drop me an email, brett@parkinson.fit. Conference info: https://wpc2019.org/

Bastyr University is hosting its second annual PD Summer School program, August 18-23, near Seattle Washington. It is pricey, but I’m curious what insights they have to offer: https://bastyrpdschool.org

Previous Week – April 13, 2019

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:
    https://parkinson.fit/forums/topic/world-parkinsons-day-2019-i-aint-drunk-im-just-thinkin/
  2. For World Parkinson’s Day, BioSpace published a great round-up of current scientific efforts to battle Parkinson’s Disease:
    https://www.biospace.com/article/world-parkinson-s-day-a-look-at-developments-in-the-treatment-of-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
    https://parkinsonslife.eu/emma-lawton-bucket-list-project/
  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.
    https://www.sciencedaily.com/releases/2019/04/190409162815.htm

    https://www.dailymail.co.uk/health/article-6904639/Virtual-reality-reduced-Parkinsons-symptoms-10-people.html
  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]?”
    https://www.irishtimes.com/news/crime-and-law/parkinson-s-disease-medicines-repackaged-as-xanax-for-sale-on-irish-market-1.3854584
  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:
    https://parkinson.fit/forums/topic/world-parkinsons-day-2019-i-aint-drunk-im-just-thinkin/
  9. People with Parkinson’s in Burlington, Vermont showed off their dance moves as a flash mob to increase Parkinson’s awareness:
    https://www.wcax.com/content/news/Flash-mob-raises-awareness-about-Parkinsons-disease-508511501.html?ref=501
  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.
    https://parkinson.fit/forums/topic/could-a-selfie-detect-parkinsons-disease-parkinsons-selfie-challenge/
  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.
    https://parkinson.fit/forums/topic/mirror-uses-ai-to-perform-routine-remote-evaluation-of-pd-symptoms-lookinglass/#post-111104
  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