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

April 28, 2019 – Parkinson’s Weekly Update

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

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

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

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

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

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

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

Brain Implants Translate Brain Activity Directly Into Speech

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

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

Will Health Insurance Pay For Parkinson’s Boxing?

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

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

Outrunning Parkinson’s Disease at the Boston Marathon

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

Young Blood Plasma for Parkinson’s Research

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

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

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

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

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

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

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

Deep Brain Stimulation Information

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

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

UK GDNF Trial Follow-up

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

Top Parkinson’s Blogs

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

Parkinson’s Programs in the News

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

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

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

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

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

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

Briefly Noted

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

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

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

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

Previous Week – April 21, 2019