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

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

March 9, 2019 – Parkinson’s Weekly Update

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

  • Researchers delivered a sobering statistic that if you can survive more than 10 years with Parkinson’s, there is a greater than 50% chance of developing dementia…and reminded us that regular exercise is the best intervention to avoid becoming a statistic.
  • Fee-fi-fo-fum, this woman can smell the musky smell of Parkinson’s…the fascinating story of a wife who nagged her husband about his hygiene for years before his PD diagnosis…20+ years later researchers are using her to sniff out biomarkers that can be used for early detection.
  • Michael J. Fox told an interviewer about a rather serious fall…most news outlets focused on the fall…but the original interview is an inspiring read.
  • Meanwhile, as part of an initiative to reduce falls and prevent freezing of gait, the Michael J. Fox Foundation is funding testing of an in-shoe wearable device that uses vibration therapy.
  • Mirror mirror on the wall, who’s the shakiest of them all? A tech startup is developing a mirror-based system that uses artificial intelligence to assess the severity of Parkinson’s Disease.
  • It is well known that over time, taking levodopa/sinemet becomes less effective for treating Parkinson’s symptoms. A new study aims to determine whether or not levodopa contributes to PD getting worse.
  • Meanwhile, researchers study the scientific importance of a good night’s sleep in such excruciating detail that it puts us to sleep. Zzzzzzzzz…
  1. Past statistics indicate 57% of patients suffering from PD develop mild cognitive impairment within five years of their initial diagnosis, and if they survive more than ten years, the majority will eventually develop dementia. A recent study reminds us that exercise does more than just improve motor symptoms of Parkinson’s Disease, such as tremor, gait disturbances, and postural instability. Exercise can improve non-motor symptoms of Parkinson’s disease, specifically mental and cognitive function. They concluded that all types of exercise are associated with improved cognitive function in individuals with PD, with high intensity aerobic exercise appearing to best improve memory. More details: https://parkinson.fit/forums/topic/exercise-can-improve-non-motor-symptoms-of-pd-hint-mental-cognitive-function/
  2. Fee-fi-fo-fum, this woman can smell the musky smell of Parkinson’s. 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 are following the scent in search of a biomarker that can be used for early detection. Preliminary research has identified several candidates. 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. This story is an improbable journey: https://parkinson.fit/forums/topic/the-woman-who-can-smell-parkinsons-why-you-have-dandruff-and-biomarkers/
  3. Michael J. Fox opened up about some of his recent health issues in an interview with the New York Times Weekend Magazine. Various news outlets did their own reporting with a bit of a “doom and gloom” spin, but if you read the original full interview, it’s rather positive and inspiring. In spite of all the challenges, his closing quote is a gem: “It makes me think, Can I just keep going in this adventure? Because if the worst I’ve had is as bad as it gets, it’s been amazing.” Read the interview here: https://www.nytimes.com/interactive/2019/03/01/magazine/michael-j-fox-parkinsons-acting.html
  4. A startup based on University of Delaware research, has received a $440,000 grant from The Michael J. Fox Foundation for Parkinson’s Research to test an in-shoe wearable device, called VibeForward, that uses vibration therapy to reduce symptoms of freezing of gait in patients with Parkinson’s Disease. This funding is part of a Fox Foundation initiative launched in 2018 to evaluate non-pharmacological interventions that have the potential to significantly improve the daily lives of people with Parkinson’s, particularly related to the treatment of gait and balance. Injuries from falls severely impact the quality of life for people with Parkinson’s Disease, as evidenced by Michael J. Fox’s personal account of his recent health issues. We dig up some of the backstory of the PDShoe research project that has now evolved into VibeForward: https://parkinson.fit/forums/topic/vibeforward-vibration-tech-reduces-freezing-of-gait/
  5. Mirror mirror on the wall, who’s the shakiest of them all? A startup in Australia is developing a mirror-based system that can assess the severity of symptoms of Parkinson’s Disease in the home. The mirror, called Lookinglass, has a display that is visible through the mirror, which asks the user to complete a set of evaluation exercises based on standardized tests used to assess Parkinson’s Disease severity. The key technology is the camera vision system that uses AI to track movement and provides an automated assessment that is then shared with health professionals. https://parkinson.fit/forums/topic/mirror-uses-ai-to-perform-routine-remote-evaluation-of-pd-symptoms-lookinglass/
  6. For those who are either new to, or unfamiliar with Parkinson’s Disease, one of the things that seems to surprise most people is that the prescription drugs have no effect one the disease itself. The drugs provide only symptomatic control. Whether you take the drugs or not, the disease progresses (gets worse), and the drugs have less ability to control the symptoms…requiring larger or more frequent doses…and/or becoming less effective. There is a school of thought among some neurologists (and a larger proportion of their patients) that you should delay taking levodopa medication until it is absolutely necessary, especially for those diagnosed with PD at a younger age. There is considerable fear that levodopa may actually cause PD to progress more rapidly.  A recent study says there is no reason for concern, and that their results show “No Harm in Using Levodopa Early in Parkinson’s for Symptom Relief…levodopa, in combination with carbidopa, did not have a disease-modifying effect on Parkinson’s disease, either beneficial or detrimental, over the 80 weeks of the trial.” That’s good news, because as an alternative to levodopa, many of these neurologists prescribe dopamine agonists, a category of drugs that have a surprising efficacy in destroying lives. More information here: https://parkinson.fit/forums/topic/no-harm-in-using-levodopa-early-so-please-dont-prescribe-a-dopamine-agonist/
  7. There were  two interesting studies drawing connections between PD and sleep released last week. On the one hand, people with a sleep disorder called REM sleep behavior disorder (RBD) were found to have an extremely high risk of developing Parkinson’s Disease: https://www.medicalnewstoday.com/articles/324630.php
    On the other hand, Israeli researchers discovered sleep is necessary to repair DNA damage accumulated during our waking hours, holding promise for new treatments for neurodegenerative diseases like PD. There’s an interesting article about the study, with so much scientific discussion of sleep that it just might put you to sleep. Seriously, it’s a good read: https://www.israel21c.org/sleep-vital-to-repair-dna-damage-israeli-study-finds/
  8. Bonus Content: Brian Grant had an impressive 12-year career in the NBA before being diagnosed with Parkinson’s. Fellow PDer Scott Rider has a great video interview with Brian, where they talk about the Brian Grant Foundation, and life with PD, especially earlier onset PD. Scott is fundraising for the Parkinson’s Foundation. Through May 1, 2019, MassMutual will donate $1 to the Parkinson’s Foundation for each of the next 5,000 subscribers to his YouTube channel. So head to his YouTube channel and help him reach his goal: Scott Rider – I Won’t Quit

Previous Week – March 3, 2019

March 3, 2019 – Parkinson’s Weekly Update

Non-scientific rendering of brain tubes

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

There was a lot of talk last week about the results of the Parkinson’s Disease trial in the UK involving a surgery that implanted tubes in patients’ heads that could be used post-surgery to deliver GDNF and would hopefully regenerate dying dopamine brain cells. On, the other side of the pond, the FDA is allowing a Fecal Microbiota Transplantation (yes, we’re talking about poop transplants) study to include Parkinson’s. Meanwhile in California, a stem cell PD trial moves closer to FDA approval. And concern for caregivers, as a study reports that wives who take care of husbands with Parkinson’s Disease have greater impairments in their own stability. Then, we remembered that our primary focus was supposed to be exercise for Parkinson’s, so we discussed tremors while exercising and the benefits of using a heart rate monitor when exercising.

  1. Let’s start with the brain tubes. A surgery implanted tubes in patients’ heads (behind the ear) that could be used post-surgery to deliver GDNF (Glial Cell Line Derived Neurotrophic Factor) to the brain. The hope was that this would regenerate dying dopamine brain cells in patients with Parkinson’s and reverse their condition. Technically, the study failed to meet its goals. But the press release that came out of the study was a bit more enthusiastic, titled “New Treatment Offers Potentially Promising Results for the Possibility of Slowing, Stopping, or Even Reversing Parkinson’s Disease”. The optimism is related to brain scans showing what the researchers perceive as improvements. They are proposing further study and tests of higher doses. Additional time might also be required for the treatment to have a more quantifiable effect. The fact that this surgery and drug delivery method was found to be safe is also very encouraging. It is extremely difficult for drugs to be able to cross the blood brain barrier, so this process opens up possibilities for further study.  We’ve got links to more detailed information here: https://parkinson.fit/forums/topic/the-uk-study-that-surgically-implanted-brain-tubes-to-test-a-treatment-gdnf/
  2. Here in the US, many are not very familiar with Cure Parkinson’s Trust (CPT), the organization behind the GDNF trial. Tom Isaacs, co-founder of CPT, was a participant in the study, and passed away during the study. Tom was diagnosed with Parkinson’s disease at the age of 27 in 1996 and co-founded The Cure Parkinson’s Trust in 2005. He passed away in 2017. In addition to leading CPT, Tom’s outsized personality encouraged us all to live well with Parkinson’s Disease. If you’re not familiar with the backstory, we highlight a video that tells the story, along with a couple of videos of Tom singing about PD and reminding us to smile, laugh, and make time to continue to enjoy life with PD:  https://parkinson.fit/forums/topic/the-uk-study-that-surgically-implanted-brain-tubes-to-test-a-treatment-gdnf/#post-99833
  3. Local TV news station KHOU (channel 11) in Houston is reporting that the FDA has given the green light to expand a Fecal Microbiota Transplantation (FMT) study at UTHealth to include Parkinson’s. The study is being performed at the Kelsey Research Foundation UTHealth Center for Microbiome Research in Houston, Texas. The idea behind FMT is that good bacteria in healthy stool samples is transferred to an unhealthy individual to repair whatever is going wrong in the gut. In a UTHealth lab, the stool samples are mixed with saline, filtered twice, freeze dried, then put in capsules. The basic transplant takes place in pill form (often orally, but sometimes via the back channel). As the pathogenesis of Parkinson’s Disease is still unknown, there are many questions as to whether this treatment would have any effect on PD. Studies on PD mice have been very interesting, and while this sounds crazy, I immediately contacted them to inquire about the trial, but the candidates are already in place. More details here: https://parkinson.fit/forums/topic/fda-allows-fecal-microbiota-transplantation-fmt-study-to-include-parkinsons/
  4. Stem cells are another promising treatment avenue for PD. Jennifer Raub is president of the Summit for Stem Cell Foundation, a nonprofit created to support the use of stem cells to treat Parkinson’s. She’s expecting to be part of a 10 patient clinical trial awaiting FDA approval in Dr. Jeanne Loring’s Torrey Pines lab. Here’s a local San Diego TV report with more details: https://www.10news.com/news/local-news/breakthrough-clinical-trial-could-reverse-symptoms-of-parkinsons-disease
  5. Speaking of stem cells, it’s probably better to wait for an actual clinical trial. The Washington Post reports that over the past year, at least 17 people have been hospitalized after being injected with products made from umbilical cord blood, a little-known but fast-growing segment of the booming stem cell industry. Sold as a miracle cure for a variety of in­trac­table conditions, the injections have sickened people in five states, prompting new warnings from health officials about the risks of unproven stem cell treatments. Read more in the Washington Post: https://www.washingtonpost.com/national/health-science/miraculous-stem-cell-therapy-has-sickened-people-in-five-states/2019/02/26/c04b23a4-3539-11e9-854a-7a14d7fec96a_story.html
  6. A review article in the  Parkinsonism & Related Disorders Journal points out that mobility deficits, including gait disturbance, balance impairments and falls, respond poorly to dopaminergic medications, indicating a role for additional neurotransmitters, such as acetylcholine. CDP Choline (citocoline) is a precursor to acetylcholine, and has long been considered as potential complimentary therapy for PD. We looked at some of these studies and wondered why it is not more commonly considered: https://parkinson.fit/forums/topic/beyond-dopamine-for-pd-gait-disturbances-balance-issues-and-falls-cdp-choline/
  7. A study in Poland noted that wives who take care of husbands with Parkinson’s Disease have greater impairments in their stability while standing than housewives or more active women of the same age. Parkinson’s patients require permanent care as their movements are unstable and slow. Their caregivers’ own stability may be affected, especially if the patient’s postural balance in impaired, and there’s an increased risk for falls. Parkinson’s News Today offers more explanation: https://parkinsonsnewstoday.com/2019/02/27/wives-of-parkinsons-patients-are-more-impaired-in-postural-stability-from-caretaking-study-finds/
  8. Finally, exercise for Parkinson’s Disease…What if my PD tremors are worse when I exercise? https://parkinson.fit/groups/rock-steady-boxing-hilton-head/forum/topic/what-if-my-pd-tremors-are-worse-when-i-exercise/ and Tracking Parkinson’s Disease Exercise Progress with a Heart Rate Monitor https://parkinson.fit/forums/topic/tracking-parkinsons-disease-exercise-progress-with-a-heart-rate-monitor/
  9. And on the human interest side, an interesting story about a hospice patient with PD in Arizona who surprised his caregivers by getting out of his wheelchair after relying on it for 18 years. The facility had been experimenting with “Sign Chi Do” for the last three weeks, a movement therapy that uses sign gestures, music and uplifting expressions. More details in this local TV report: https://parkinson.fit/forums/topic/parkinsons-patient-walks-after-18-years-in-a-wheelchair/

Previous Week – February 25, 2019

February 25, 2019 – Parkinson’s Weekly Update

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

We saw people with Parkinson’s in Tasmania (Australia) turning heads with the latest Parkinson’s Disease fashion trend, wearing red light buckets on their heads. They say it helps improve their symptoms. We saw study results that told us that while research on the gut bacteria/PD connection continues, we should also be aware that gut bacteria can interfere with levodopa treatment. Rock and roll legend Peter Frampton was diagnosed with Inclusion Body Myositis, a rare disease that based on some of the symptoms, could be misdiagnosed as Parkinson’s Disease. Those are just a few of the hot topics from last week.

  1. Grace Winiecki was turning heads last week with a story from ABC News Australia about a clinical trial of photobiomodulation treatment for Parkinson’s Disease. While it seems a little bit out there, apparently this is neither a joke nor a fashion statement. Grace Winiecki spends 40 minutes each day with a red light bucket on her head — a device she claims is making a significant difference to her life. We’ve collected more on the story here: https://parkinson.fit/forums/topic/wearing-a-red-light-bucket-on-your-head-for-parkinsons/
  2. Hardly a week goes by where there isn’t another study exploring the connection between gut bacteria and Parkinson’s Disease. While research continues to try to understand exactly how different strains of gut bacteria are involved in the development and/or progression of PD, researchers at the University of Groningen in the Netherlands have recently released a study that shows how a certain type of gut bacteria interfere with the effectiveness of levodopa drug treatment for Parkinson’s Disease. This could explain why some people require higher doses of levodopa to see an effect. We’ve posted more thoughts and links about this study here: https://parkinson.fit/forums/topic/gut-bacteria-can-interfere-with-the-effectiveness-of-levodopa-sinemet/
  3. About eight years ago, Peter Frampton started to notice that his ankles felt a little tight in the morning. He initially dismissed it as one of the many pains that comes with getting older, but as time passed, his legs began feeling weak as well. He tried to ignore the signs that something was wrong until four years ago when a fan kicked a beach ball onto the stage at one of his concerts and he fell over when he tried to kick it back. “My legs just gave out,” he says. “We all joked, ‘He’s fallen and he can’t get up.’ But I was embarrassed.” Two weeks after the beach ball incident, he tripped over a guitar cord on his stage and collapsed again. He was also noticing that his arms were getting so weak that loading heavy objects onto the overhead compartments of planes was becoming extremely difficult. Can you relate? In his case, it wasn’t Parkinson’s: https://parkinson.fit/forums/topic/peter-frampton-inclusion-body-myositis/
  4. Last year, the Michael J. Fox Foundation launched an initiative to evaluate non-pharmacological interventions that have the potential to significantly improve the daily lives of people with Parkinson’s, particularly related to the treatment of gait and balance. Honda and Ohio State University received a grant from this initiative to conduct a Phase II randomized controlled trial to study the impact of an eight week intervention using the Honda Walking Assist Device to improve mobility in people with PD. Get acquainted your new robotic exoskeleton here: https://parkinson.fit/forums/topic/honda-walking-assist-and-similar-technologies/
  5. We also revisited Dr. Laurie Mischley’s mission to collect as much data as possible over a five-year period with the hope of finding dietary and lifestyle factors associated with a slower disease progression of Parkinson’s. We revisited the results of her 2017 study of the “Role of Diet and Nutritional Supplements in Parkinson’s Disease Progression”, and shared links to two of her recent presentations on the topic: https://parkinson.fit/forums/topic/role-of-diet-and-nutritional-supplements-in-parkinsons-disease-progression/