Weekly Update – Highlights include: On-line Parkinson’s Exercise programs; another clinical trial treatment can’t beat the placebo; feral pigs vs. placebo; dancing with your dog; Parkinson’s choruses sing for their supper; What I Wish I Knew, But Am Glad I Didn’t Know (When I Was Diagnosed With Parkinson’s); and more
This is a round-up of Parkinson’s Disease news and information that caught our attention last week.
On-line PD Exercise Programs – PD On The Move
Alexander Tressor is a broadway dancer and ballet instructor who was diagnosed with Parkinson’s in 2007. He founded PDOnTheMove.com to share the exercise programs and lifestyle changes that have worked for him fight back against Parkinson’s. If you’re looking for ideas to improve or extend your home exercise routine, his website is a fantastic resource with hours of suggested workouts and a free library of individual exercises.
Gifted with a fantastic sense of humor, he also spends time as a motivational speaker for Parkinson’s groups. His 2012 video “Shaken, Not Stirred” is a YouTube Parkinson’s classic…light-hearted, entertaining and educational:
On-line PD Exercise Programs – Daily Dose PD
Speaking of exercise, a local TV station in Seattle reports on Nate Coomer’s online exercise program for Parkinson’s Disease, the Daily Dose PD: https://komonews.com/news/healthworks/parkinsons-patients-find-power-thru-exercise
Earlier this year, Nate Coomer, founder of The Parkinson’s Fitness Project, launched The Daily Dose: an exercise program designed to benefit those with Parkinson’s Disease that can be done from the comfort of their own home, while still providing the benefit of community and guidance by a certified physical therapist. https://www.dailydosepd.com
Blog of the Week
Allison Smith, better known as The Perky Parkie, shares an insightful and entertaining look at the “on” side of “off and on” periods with PD. Admittedly, I’ve never felt the urge to dance with my dog when I’m “on”, but they both seem to be having a good time. It made me laugh…
Absentee Ballot Rejected Over Parkinson’s Signature Issues
In Indiana, your ballot can be rejected and you would never know it, according to a new federal lawsuit. The suit is challenging the constitutionality of an Indiana law that allows election officials to discard absentee ballots if they don’t think the signature on the envelope matches other signatures on file with the county. The lawsuit is filed on behalf of government accountability group Common Cause Indiana and four voters in St. Joseph County whose ballots were not counted because of questions about their signature. One of these voters, 69-year-old Mary J. Frederick, has Parkinson’s disease. “Because of her Parkinson’s, her signature becomes increasingly illegible as the day goes on, although her signature has never been questioned by her bank or anyone else,” the lawsuit says. https://eu.indystar.com/story/news/politics/2019/05/16/indiana-common-cause-absentee-ballot-lawsuit-votes-thrown-out-illegally/3691931002/
Singing For Your Supper
Singing, as a therapy for Parkinson’s, continues to garner attention as a therapy for Parkinson’s Disease. Benefits of this therapy include maintaining a louder volume when speaking (a challenge for many people with Parkinson’s) and increased respiratory strength. An article from the Worcester (Massachusetts) Telegram tells the story of a Parkinson’s chorus, and highlights it’s benefits in facilitating socialization, particularly for those with more advanced PD.
When an 81 year old woman who has dealt with Parkinson’s Disease for 25 years says “The chorus is the most important thing in my life,” you get a better idea of how these programs can make a difference:
On the subject of singing, a research study in Australia attempts to measure the benefits of a particular singing therapy program for people with PD: https://parkinsonsnewstoday.com/2019/05/17/singing-therapy-may-prevent-communication-impairment-parkinsons-patients/
Another Clinical Trial Disappoints (Placebos Win Again)
Atlas Obscura tells the fascinating history of “The Livestock Living at the End of the World”, feral pigs that roam The Auckland Islands, a subantarctic archipelago now considered part of New Zealand: https://www.atlasobscura.com/articles/what-lives-on-auckland-islands
Why are we interested in these pigs?
On the mainland of New Zealand, Living Cell Technologies (LCT) keeps a small herd of Auckland Island pigs in a secured, high-tech quarantine facility, where each one—according to Willis—is worth close to $450,000.
“Due to 200 years of isolation after they were left on the island, the Auckland Island pigs are free from viruses [and] pathogens which affect most other pigs,” says LCT CEO, Ken Taylor. While widespread pig-borne viruses have been a major obstacle in xenotransplantation, or grafting cells from animals for use in human therapies, the Auckland Island pigs haven’t been exposed to them.
Using cells sourced from the virus-free Auckland Island pigs, LCT is testing an experimental therapy for Parkinson’s Disease called NTCELL. Support cells, which secrete cerebrospinal fluid and support the natural function of the nervous system, are taken from a sedated pig’s choroid plexus and inserted in capsule form into a damaged site of the human brain. According to Taylor, the therapy is currently undergoing Phase IIb trials.
Sadly, LCT announced this week that this phase IIb trial met safety goals but not efficacy goals. The company is “seeking advice from both our statistician and a panel of internationally recognized experts on clinical studies in Parkinson’s disease to help interpret the data further.” Of particular interest in the press release was a curious statement referencing “6 placebo patients … in whom responses were quite varied.”
Researchers hate the placebo effect. Millions of dollars are wasted in failed critical trials when promising drug candidates or treatments fail to perform better than fake placebo treatments.
If you missed it last week, or didn’t have time to watch a 20 minute long video, we think you’ll find our theories on Parkinson’s placebos quite interesting.
We look at this issue from a different perspective. Why are placebos more of a factor when it comes to Parkinson’s? (Spoiler alert: We think it’s dopamine.) Can we leverage what we learn about placebos to create our own placebo effects? (Spoiler alert: You’re probably already doing this to some extent.)
Maybe it’s a vitamin & supplement regimen, or your diet. Maybe there are foods you will or will not eat at particular times of the day. Maybe it’s your art or music. Maybe it’s your exercise routine. Maybe it’s your bicycle. Maybe it’s swimming. Maybe it’s dancing. Maybe it’s meditation. Maybe it’s neurofeedback. Maybe it’s yoga or tai chi. Maybe it’s a sport. Maybe it’s table tennis. Maybe it’s poetry. Maybe it’s your gun therapy. Maybe it’s a red light bucket on your head. Maybe it’s volunteer work.
Placebos aren’t just in research studies, they are all around us. Understanding how and why they affect us, and how dopamine is involved, gives us additional insight into Parkinson’s Disease.
Blame It On The Dopamine
Speaking of dopamine (the neurotransmitter that we just can’t get enough of), a recent study looks at dopamine’s role in forming new memories. Could this be why your long term memory is rock solid, but you can’t remember what you ate for breakfast?
What I Wish I Knew, But Am Glad I Didn’t Know (When I Was Diagnosed With Parkinson’s)
This title sounds like something Yogi Berra might have said. Like baseball, Parkinson’s Disease is 90% mental and the other half is physical. (I think that’s actually quite a profound analysis of life with PD.)
What I wish I knew when I was first diagnosed with Parkinson’s is that a lot of people continue to lead long active lives with Parkinson’s Disease for 10 to 20 years, and even longer, and some actually lead more active and more productive lives post-diagnosis.
John Cleese once said, “Life is a terminal disease, and it is sexually transmitted.” Parkinson’s by contrast, is neither. https://parkinson.fit/forums/topic/what-i-wish-i-knew-but-am-glad-i-didnt-know-when-i-was-diagnosed-with-parkinsons/
Parkinson’s Exercise Programs in the News:
Cape Girardeau, Missouri (Christian Boxing Academy) – https://www.kfvs12.com/2019/05/14/fighting-parkinsons-ringside-view-patients-taking-back-their-lives/
Lake Norman, North Carolina (Rock Steady Boxing) – https://www.wbtv.com/2019/05/13/boxing-gym-helps-people-with-parkinsons-disease-fight-get-stronger/
Weekly Update – Highlights include: Mayo Clinic researchers explore the relationship between low levels of Vitamin B-12 and Parkinson’s; appendix removal might or might not affect Parkinson’s risk; monkey butt research finds PD related proteins linked to inflammation; impulse control disorders and PD; Pharmaceutical News from the Annual Meeting of the American Academy of Neurology; technology targets freezing of gait; creating your own placebo effect; inspiring people with Parkinson’s talk boxing, DBS and poetry; and more.
This is a round-up of Parkinson’s Disease news and information that caught our attention last week.
Highlights include: Mayo Clinic researchers explore the relationship between low levels of Vitamin B-12 and Parkinson’s; appendix removal might or might not affect Parkinson’s risk; monkey butt research finds PD related proteins linked to inflammation; impulse control disorders and PD; Pharmaceutical News from the Annual Meeting of the American Academy of Neurology; technology targets freezing of gait; creating your own placebo effect; inspiring people with Parkinson’s talk boxing, DBS and poetry; and more.
Mayo Clinic published a research commentary that analyzes the relationship between low levels of Vitamin B-12 and Parkinson’s Disease. While the paper does not prove causality, it does “propose that vitamin B12 supplementation could be considered as an adjuvant approach to improve cholinergic transmission and, potentially, motor and cognitive function in patients with PD.” And it makes a case for “future clinical trials of high-dose vitamin B12 supplementation as a well-tolerated symptomatic adjunctive therapy for posture and gait instability and cognitive impairment in PD.” Read more:
The story that generated the most headlines last week was a review study that concluded that people who have had their appendix removed were 3 times more likely to develop Parkinson’s Disease. While that sounds worrying, it basically meant that the odds of developing PD jumped from 0.3% to 1%…significant, but not what I’d call a smoking gun…especially when just a few months ago, a European study found the opposite. Yawn…boring. But if you must read about it, this Fox Foundation article has info about these conflicting stories:
Researchers at the University of Wisconsin Madison were playing a game of “smell my finger” with a group of monkeys when they realized something. (I’m told that’s not exactly how it happened.) They were able to detect chemical alterations (phosphorylated alpha-synuclein) similar to abnormal protein deposits in the brains of Parkinson’s patients in the intestines linings of monkeys with inflamed bowels. This is interesting because it adds support to the idea that inflammation may play a key role in the development of PD. Longer term, if this was found to correlate as a PD biomarker in humans, PD detection could be offered in conjunction with a regular colonoscopy.
More details: https://neurosciencenews.com/parkinsons-monkey-gut-inflammation-13066/
That last story reminds me of when my kids were younger and they were fond of asking me “You know what?” When I’d dutifully reply “What?” They would enthusiastically reply back “Monkey Butt!” To think that somewhere in Wisconsin, a similar dialog exchange may have inspired that research study. In which case, I’m going to propose that a follow-up study should evaluate a promising drug candidate that can not only treat inflamed monkey bottoms, but just might cure Parkinson’s: Anti Monkey Butt Powder.
Impulse control disorders (ICDs) are a frequent side effect of dopamine agonist medications that are sometimes used to treat Parkinson’s Disease, in some cases leading to serious financial, legal and/or devastating psychosocial consequences. An article from Argentinean neurologists provides a great overview of ICDs, allowing you to become more aware of what to look out for. ICDs involve pleasurable behaviors performed repetitively, excessively, and compulsively, with a failure to resist an impulse or temptation to control an act or specific behavior, which is ultimately harmful to oneself or others and interferes in major areas of life. The major symptoms of ICDs include pathological gambling, hypersexualtiy, compulsive buying/shopping and binge eating. The spectrum of ICDs also includes punding, hobbyism, walkabout, hoarding, and compulsive medication use.
The Micheal J. Fox Foundation issued an update to their Parkinson’s Diet Guide. While there is no one specific diet for Parkinson’s, what you eat and when can affect your medications and symptoms. The updated guide explores these topics as well as research on popular regimens (such as the ketogenic and Mediterranean diets) and Parkinson’s: http://www.michaeljfox.org/foundation/news-detail.php?updated-guide-diet-and-parkinson
Pharmaceutical News from the Annual Meeting of the American Academy of Neurology
The 71st Annual Meeting of the American Academy of Neurology was held in Philadelphia last week. This is a big event for drug companies to draw attention to the latest pharmaceutical studies. There were no major new advances in Parkinson’s Disease treatment, but there were a few updates of interest.
The DUOGLOBE study is a 3-year evaluation of the real-world effectiveness of levodopa-carbidopa intestinal gel (DUOdopa/duopa) on motor fluctuations and duration and severity of dyskinesia in patients with advanced Parkinson’s disease (51% study participants ≥10 years’ disease duration). An interim analysis of first year results reported significantly reduced patient-reported OFF time (mean decrease of 4.1 hours), and significantly reduced dyskinesia. https://www.medscape.com/viewarticle/912601
Last December (2018), the FDA approved a levodopa inhalation powder (Inbrija from Acorda Therapeutics) for intermittent treatment of OFF episodes in people with Parkinson disease treated with carbidopa/levodopa. Results were shared from an extension study of the original SPAN-PD study, showing that this levodopa inhalation powder is effective in achieving an ON state during OFF periods, as well as in gaining more dyskinesia-free ON time and lowering the daily amount of OFF time.
San Diego-based Neurocrine Biosciences presented data from two Phase III clinical trials of opicapone, a once-daily, oral catechol-O-methyltransferase (COMT) inhibitor for Parkinson’s disease. They found that patients receiving opicapone 50 mg with levodopa had a significant and sustained improvement in symptoms. The studies (BIPARK-1 and BIPARK-2) found that the combination of the drugs had a significant and sustained increase in ON time without problematic dyskinesia in Parkinson’s patients who had motor fluctuations. Opicapone is already approved in Europe since June 2016 as Ongentys by BIAL. In February 2018, Neurocrine licensed opicapone for development and commercialization in the U.S. and Canada from BIAL.
After more than a decade of studies, the three year phase 3 clinical trial of isradipine study is complete. The study of the blood pressure drug isradipine did not show any benefit for people with Parkinson’s disease. The drug isradipine had shown promise in small, early studies and hopes were high that this could be the first drug to slow the progression of the disease. “Unfortunately, the people who were taking isradipine did not have any difference in their Parkinson’s symptoms over the three years of the study compared to the people who took a placebo,” said study author Tanya Simuni, MD, of Northwestern University Feinberg School of Medicine in Chicago and a member of the American Academy of Neurology.
The open-label EASE LID 2 study concludes that long-term use of amantadine (specifically the extended release formulation Gocovri from Adamas Pharmaceuticals) in conjunction with levodopa treatment may help patients optimize their levodopa regimen. In layman’s terms, this vaguely worded endorsement is due to results showing minor motor improvements in UPRDS scores after amantadine is added to an existing carbidopa/levodopa treatment plan.
PD Technology Spotlight
A Cal Poly (California Polytechnic State University) student project to help a local military veteran has become a business designed to help patients with Parkinson’s disease overcome a debilitating and dangerous symptom known as “freezing of gait.” De Oro Devices, based in San Luis Obispo, California, recently edged out six other startups for a $100,000 investment during the second annual Central Coast Angel Conference Pitch Competition held in April by the university. While working on the project as part of the Quality of Life Plus (QL+) program, which pairs the challenges of wounded vets with student projects, student Sidney Collin piggybacked on research showing that audio and visual cues can interrupt freezing of gait to re-establish the brain-body connection and restore mobility. While those features were integrated into existing devices, they couldn’t be added to a person’s cane or walker. And other devices didn’t provide on-demand cueing. “It was either always on or always off, and that was a problem for a lot of people,” Collin said. The device, called the Gaitway, is slightly bigger than a computer mouse and easily attaches to a cane or walker. When a patient gets stuck, he or she can activate an audio cue (a metronome beeping noise) or a visual one (a green laser line that projects on the ground), which will interrupt the freezing of gait.
Chinese technology company Tencent, in collaboration with UK medical start-up Medopad, has launched a clinical trial in London that aims to use artificial intelligence to diagnose people living with Parkinson’s. 40 participants will use an artificial intelligence powered mobile app to track and monitor their symptoms. The app will ask users to participate in a number of online tests, such as performing hand movements in front of their phone’s camera, that will help doctors gather information on the development of their condition.
Researchers from Osaka University (Japan) have developed an automated tool that uses ultrasonication to quickly measure α-synuclein aggregates, potentially enabling early diagnosis and assessment of new treatments for Parkinson’s disease. The HANdai Amyloid Burst Inducer (HANABI) device uses a burst of ultrasonication to detect α-synuclein aggregation in cerebrospinal fluid. Ultrasonication induces pressure variations, transforming sound waves into mechanical energy. The authors expect the HANABI device to be used for to clinical diagnosis, severity assessment, and treatment development for Parkinson’s disease.
Placebo Effect & Dopamine – Theories & Application
From the first time I read about it, I’ve been fascinated by the placebo effect. The placebo effect is a big challenge in clinical trials for a new drug or treatment. In these so-called double blind studies, there is one group of patients that receives the treatment and another group that receives a fake treatment known as the placebo. The patients, and those evaluating the patients do not know who is receiving the real treatment or the placebo until the end of the study. For a treatment to be deemed effective, the patients who received the treatment need to fare better than the placebo group in a statistically significant way. In other words, the treatment being tested has to prove that it’s better than nothing…a challenge that is surprisingly difficult to meet.
A big part of the problem in trials related to Parkinson’s Disease is that there are significant numbers of individuals that see improvement during these tests as part of the placebo group. This has fascinated me. I’ve wanted to understand this better, so that I can create my own placebo effect.
I created a presentation video to explain why dopamine’s significance in Parkinson’s Disease invites the placebo effect and offer some suggestions how people with Parkinson’s can leverage this to create placebo effects.
Inspiring People with Parkinson’s
Parkinson’s Life profiled Jennifer Parkinson, who was diagnosed with young onset Parkinson’s Disease 14 years ago at the age of 32. After 4 years of worsening symptoms, she discovered boxing, and testifies “Boxing changed my way of life and gave my kids their mum back.” Jennifer now runs a non-profit boxing and fitness organization helping people with Neurological disorders such as Parkinson’s, MS, Stroke, and Traumatic Brain Injury.
David Sangster was diagnosed with young onset Parkinson’s Disease 8 years ago at the age of 29, and has been extremely active as an advocate for Parkinson’s issues in the UK. Worsening motor symptoms and Dyskinesia led him to consider Deep Brain Stimulation (DBS). In a recent video, he shares his excitement about regaining control of his Parkinson’s symptoms:
Poetry is not normally my thing, but Wayne A. Gilbert’s “PD Refusenik” is an entertaining and introspective protest of a conscientious objector being asked to battle Parkinson’s. Wayne is, among other things, a lover, not a fighter. He is also a retired teacher and professor of English and of Educational Psychology. He was diagnosed with Parkinson’s in 2005 and has been writing about his experiences living with it ever since. Thanks to the Davis Phinney Foundation for sharing Wayne’s video.
Parkinson’s Exercise Programs in the News
- Berks County, Pennsylvania (Rock Steady Boxing at Body Zone):
- Elgin, Illinois (Rock Steady Boxing): https://www.dailyherald.com/news/20190508/in-this-boxing-class-the-fight-is-against-parkinsons-disease-
- Durango, Colorado (The Good Fight Boxing Gym):
Weekly Update – We start with why strength training should be a component of any exercise protocol for Parkinson’s. Next, we find inspiration and life lessons from 6 individuals who challenge preconceived notions of Parkinson’s Disease. In research news, after more than 10 years of study, a once promising drug candidate fizzles out; an interview with the doctor behind the spine tingling research featured last week; a biomarker that will bring a tear to your eye; the latest MJFox Foundation grants. Plus, we share some of our favorite updates from Parkinson’s bloggers this week; Parkinson’s exercise programs in the news; and more.
This is a round-up of Parkinson’s Disease news and information that caught our attention last week.
We start with why strength training should be a component of any exercise protocol for Parkinson’s. Next, we find inspiration and life lessons from 6 individuals who challenge preconceived notions of Parkinson’s Disease. In research news, after more than 10 years of study, a once promising drug candidate fizzles out; an interview with the doctor behind the spine tingling research featured last week; a biomarker that will bring a tear to your eye; the latest MJFox Foundation grants. Plus, we share some of our favorite updates from Parkinson’s bloggers this week; Parkinson’s exercise programs in the news; and more.
Muscle Weakness and Strength Training
Muscle weakness is an almost universal symptom in Parkinson’s Disease. Or is it? This is actually a topic of some debate. People with Parkinson’s certainly perceive muscle weakness, which is attributed to low levels of the neurotransmitter dopamine. The motor related symptoms of PD lead to decreased muscle usage, which compounds the problem, resulting in decreased muscle mass. Strength training exercises for all major muscle groups is a common sense strategy to counter the effects of PD. A study from Brazil measured the effects of strength training for Parkinson’s and concluded that “Low-volume resistance training improves the functional capacity of older individuals with Parkinson’s disease”. We look at why strength training should be a central part of your exercise protocol for Parkinson’s and revisit a similar study from 3 years ago: https://parkinson.fit/forums/topic/low-volume-resistance-training-improves-function/
Inspiring People with Parkinson’s
The Irish Independent published a profile of Robin Simons. Diagnosed 21 years ago when he was 40 years old, he reflects on a life with Parkinson’s that has now been half of his adult life. He explains “I am a wonder of modern medicine. Fifty years ago, there was no effective treatments to help control the ‘shaking palsy’. No Levodopa, no APO-go morphine infusion pump and no deep brain stimulation (DBS) surgical procedure. Without these interventions, I certainly would not have lived the life I have. Is medicine on its own enough to have enabled me to live a fulfilling life? I think not.” Robin offers excellent insight, advice and inspiration for all of us: https://www.independent.ie/life/health-wellbeing/i-am-a-wonder-of-modern-medicine-man-living-with-parkinsons-disease-38053644.html
Ned Neuhaus was diagnosed with Parkinson’s 6 years ago, and decided to channel his effort toward helping others by bringing Rock Steady Boxing to his community in central Illinois. Local news visited Ned’s gym last week:
Ned talks about his journey accepting his Parkinson’s diagnosis on YouTube: https://www.youtube.com/watch?v=8YjxGdFRmx0
Paula Caldwell was diagnosed with Parkinson’s 14 years ago. Now in her early 70’s, she was certified as a Rock Steady Boxing coach two years ago, and has helped bring the RSB program to a local boxing gym in a suburb of Youngstown, Ohio, to help others battle PD: https://www.wkbn.com/news/local-news/boardman-woman-fighting-parkinson-s-brings-new-training-program-to-local-gym/1974905438
The Davis Phinney Foundation profiled Brian Reedy, who was diagnosed with Parkinson’s Disease 8 years ago, and explains how forced intense exercise has changed his life for the better. He tried exercising on his own, and worked with two physical therapists, but only saw continual decline in his ability. Then he found a physical therapist that pushed him hard with exercises that would challenge his deficits. They weren’t preset “Parkinson’s exercises”, they were exercises based on assessment of his abilities, that challenged him and pushed him to exceed his expectations: https://www.davisphinneyfoundation.org/blog/how-intense-exercise-changed-my-life-with-parkinsons/
American Ninja Warrior Jimmy Choi‘s story never gets old, faced with a Parkinson’s diagnosis 16 years ago at the young age of 27, he faced 8 dark years before deciding to really fight back. His metamorphosis is incredible and his journey is inspirational: https://wgntv.com/2019/05/03/how-a-parkinsons-diagnosis-changed-the-course-for-american-ninja-warrior/
Parkinson’s News Today profiled Jim McNasby, a New York City attorney who was diagnosed with Parkinson’s 20 years ago at the young age of 30. After recently having had Deep Brain Stimulation (DBS) surgery, he wonders why he waited so long. https://parkinsonsnewstoday.com/2019/05/03/lawyer-parkinsons-disease-describes-positive-effects-dbs/
Science and Research Briefs
After more than a decade of studies, the three year phase 3 clinical trial of isradipine study is complete. The study of the blood pressure drug isradipine did not show any benefit for people with Parkinson’s disease. The drug isradipine had shown promise in small, early studies and hopes were high that this could be the first drug to slow the progression of the disease. “Unfortunately, the people who were taking isradipine did not have any difference in their Parkinson’s symptoms over the three years of the study compared to the people who took a placebo,” said study author Tanya Simuni, MD, of Northwestern University Feinberg School of Medicine in Chicago and a member of the American Academy of Neurology. More: https://parkinson.fit/forums/topic/isradipine-phase-3-study-results-expected-soon/#post-115567
Sarah Hamm-Alvarez knows how to bring a tear to your eye. She is a tear expert and Professor of Ophthalmology at the Roski Eye Institute at the Keck School of Medicine (University of South California). Her research has identified higher levels of a protein called called oligomeric α-synuclein in tears of people with Parkinson’s, that is being evaluated as biomarkers to be used to test for Parkinson’s Disease. She spoke with MD Magazine about this biomarker research, which she presented at the 2019 Annual Meeting of the Association for Research in Vision and Ophthalmology (ARVO) in Vancouver, BC.
Part 1: https://www.mdmag.com/conference-coverage/arvo-2019/sarah-hammalvarez-phd-could-tears-hold-parkinson-biomarker
Part 2: https://www.mdmag.com/conference-coverage/arvo-2019/sarah-hammalvarez-phd-comparing-basal-reflex-tears
Part 3: https://www.mdmag.com/conference-coverage/arvo-2019/sarah-hammalvarez-phd-developing-biomarker-parkinson-disease
Last week, we mentioned the promising results of a small study that is using spinal cord stimulation to restore walking functionality for advanced stage Parkinson’s patients. A Parkinson’s blogger at the Tomorrow Edition interviewed the team leader of that study, Dr. Mandar Jog, who is the director of the Movement Disorders Centre in London, Ontario and Professor of Neurology at Western University: https://tmrwedition.com/2019/05/02/interview-with-spinal-cord-stimulation-expert-prof-mandar-jog/
The Michael J. Fox Foundation announced 39 new grant awards totaling more than $5 million. The selected projects reflect a research strategy to define, measure and treat Parkinson’s disease. https://www.michaeljfox.org/foundation/news-detail.php?what-we-fund-million-in-new-grants-for-parkinson-research-b
The Michael J. Fox Foundation and 23andMe Launched Fox DEN, a Data Exploration Network for the research community. Press release:
Public Citizen, a consumer advocacy group, has filed a lawsuit against the Food and Drug Administration for failing to act on a petition filed three years ago demanding the agency place serious warnings on a handful of drugs (dopamine agonists) used to treat Parkinson’s disease that have been blamed for compulsive behaviors. These include sudden sexual urges, compulsive eating and shopping, and pathological gambling. https://www.statnews.com/pharmalot/2019/04/29/fda-parkinson-compulsive-behavior/
Parkinson’s Blog Highlights
Parkie Support talks about “What I wish I had known… being first diagnosed with PD”, and offers some insights that are often overlooked. I was particularly intrigued by her comments about family, “Recognize that this may be as hard for your family to grasp as it has been for you. Some will be in denial, telling you that It’s all in your head. Sometimes because they don’t deal with illness well.” It’s an interesting read, regardless of how far you’ve journeyed since your initial diagnosis.
Mariette Robijn certainly has a way with words, and is indulging her creative muse in what should turn out to be an epic journey searching for a way out, or a way through, the Kingdom of Parkinson’s. It all begins with getting stuck on the wrong side of a gate and a realization about collarbones. Follow the journey at
Frank Church usually blogs about Parkinson’s research topics, but this week he’s sharing his enthusiasm for the PWR!Moves exercise program for Parkinson’s: https://journeywithparkinsons.com/2019/05/03/the-power-of-parkinson-wellness-recovery-pwr-for-parkinsons-disease-moves-gym-and-surge/
Parkinson’s Exercise Programs In The News
- Peoria, Illinois (Rock Steady Boxing) –
- Boardman, Ohio (Rock Steady Boxing) –
- Hamburg, New York (Rock Steady Boxing) –
- Knoxville, Tennessee (Rock Steady Boxing) –
- Mason City, Iowa (Rock Steady Boxing) –
- Galesburg, Illinois (Rock Steady Boxing) –
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:
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:
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:
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:
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:
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)
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:
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/
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