May 4, 2019 – Parkinson’s Weekly Update

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:
https://hoiabc.com/news/peoria-news/2019/04/29/boxing-through-the-challenge-living-with-parkinsons-disease/
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:
https://www.prnewswire.com/news-releases/michael-j-fox-foundation-and-23andme-launch-fox-den-a-data-platform-combining-patient-reported-outcomes-and-genetic-information-in-parkinsons-300839210.html

Other News

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.
https://parkiesupport.blogspot.com/2019/05/what-i-wish-i-had-known-being-first.html

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
http://marietterobijn.com/kingdom-of-parkinsons/

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

Previous Week – April 28, 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