SWALLOW PROBLEMS MAY START EARLY

September 11, 2019

Greetings from the University of Wisconsin-Madison. I would like to share some research and thoughts with you on swallowing problems and Parkinson disease (PD). A myth is that swallowing problems don’t occur until later stages of the disease process. However, we are learning that simply is not true. Dysphagia, or disordered swallowing, may be one of the first signs of PD. As you may know by now, PD affects people in very different ways. So, some people may have early dysphagia, some people late. This is why attempts to correlate disease severity with dysphagia have been unsuccessful.

Dysphagia can manifest in many different ways. Most commonly in PD, people have difficulty chewing solid foods, getting the swallow started, ‘pumping’ movements with the tongue, multiple swallows per mouthful (even if it is small), food/liquid going down the wrong pipe (we call that aspiration), trouble coordinating breathing and swallowing, a weak cough, and feelings of food getting stuck in the throat or chest. 

These difficulties can range from mild to severe and the consequences range from having to limit eating/drinking certain foods/liquids, having to modify food/liquids, having to perform maneuvers while swallowing, or sometimes tube feedings. There are many ways to treat dysphagia. This is typically done by a medical team under the leadership of a speech-language pathologist and physician. Our goal to increase awareness and have a pro-active approach to dysphagia so that we can avoid restricting what people eat and recommending tube feedings. We think that with early identification and treatment, this can be achieved in most cases!

Corinne A. Jones, PhD, CCC-SLP and I recently published a paper where we examined differences in swallow physiology and patient’s perceptions of swallow changes in the early stages of PD. To do this, we recruited patients in the early stages of PD and age-matched controls. I should note that people were on their typical medications.

To measure swallow physiology, we used two instruments. The first is video fluoroscopy-a moving x-ray. A person ingests food/liquid mixed with barium and we can measure the movement of structures, as well as how safe and efficient the swallow is. This is the most common tool that is used clinically. Although this is a robust tool, it does have some issues with reliability of measures and doesn’t necessarily have the ability to assess subtle changes to swallow physiology. However, it remains one of the best diagnostic tools we have to assess swallow dysfunction. The second is high resolution manometry. This is a cutting edge tool that uses a catheter that is inserted through the nose and swallowed into the esophagus. The catheter has an array of pressure sensors and measures pressure and timing of swallow events. This tool allows us to make more precise and quantifiable measurements of swallowing activity.

We also used a clinically-validated patient-reported quality of life tool called The Sydney Swallow Questionnaire. This is a 30-item questionnaire that asks about perceptions of swallowing difficulty.

Not surprisingly, with videofluoroscopy, we didn’t find evidence of overt swallow dysfunction. This means swallowing was ‘relatively’ normal in persons with early PD compared to age-matched controls. However, using high resolution manometry, we found early differences in swallow physiology in persons with early PD compared to controls. One of the most interesting findings was that there was a lot of abnormal variability in swallowing patterns in those with PD. Typically, when a person swallows measured amounts of water, that person swallows in the same way each time. However, those with PD had much more within-person variability. We think that this early variability in swallowing could be a hallmark feature of PD.

Also, patients self-reported swallowing issues on the questionnaire. In particular, persons with PD reported significant difficulty with swallowing saliva. These patients came in stating they had no swallowing issues. This underscores the very important need to ask the right kinds of questions and use a validated questionnaire to determine if there are early swallowing differences.

So, what does this all mean? Well, we think there are early changes to swallowing function with PD. And we also think if you ask the right questions and use the right tools, you can pick up on these differences. But, differences don’t necessarily mean swallowing is dysfunctional to the degree that it affects the health and safety of the patient. However, this could mean that dysphagia is on the horizon. As such, we feel that it is important to not only pay attention to swallowing, but to advocate for yourself and make sure this is discussed with your neurologist early and often. If you or your physician (or your partner) suspect that you might have dysphagia, get a referral to a speech-language pathologist for a swallowing evaluation.

Dysphagia affects nutrition, hydration, quality of life, and health status. In fact, the leading cause of death in PD is a complication from dysphagia-aspiration pneumonia. So it is important that we are aware that this is yet another part of PD. And let’s not forget about the esophagus (food pipe)! Often reduced motility, spasm, or reflux can be the first signs of a problem.  Below is a list of signs/symptoms of dysphagia.

List of signs/symptoms of dysphagia:

1.     Difficulty chewing solids.
2.     Not eating certain foods any more.
3.     Trouble getting the swallow started (especially with tongue movements).
4.     Coughing when eating or drinking.
5.     A ‘wet’ or gurgly voice when/after eating or drinking.
6.     Difficulty swallowing saliva.
7.     Frequent drooling.
8.     Food or liquid getting ‘stuck’ in the throat.
9.     A feeling or sensation in your throat or chest.
10.  Chest infections such as pneumonia.
11.  Weight loss.
12.  Weak cough.

Remember, the person with PD may not notice these signs, so it is best to err on the side of caution and ask. Once a proper evaluation has been performed, then a management plan can be put in place to prevent further complications and perhaps rehabilitate the swallow. Remember, eating and drinking are part of what makes life pleasurable, so please make sure to stay healthy!

https://youtu.be/I2WIzp1Vv2c

References:

Multimodal swallowing evaluation with high-resolution manometry reveals subtle swallowing changes in early and mid-stage Parkinson disease: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4816667/

Dr. Michelle Ciucci’s Website: http://ciuccilab.wixsite.com/main

University of Wisconsin-Madison Swallow Clinic: https://www.uwhealth.org/voice-swallow/voice-and-swallowing/11279

Michelle R Ciucci, PhD, CCC-SLP presented at the Fourth World Parkinson Congress  in Portland, OR.

She currently serves as an Associate Professor in the Department of Communication Sciences and Disorders and the Department of Surgery-Otolaryngology and the Neuroscience Training Program at the University of Wisconsin-Madison.

Ideas and opinions expressed in this post reflect that of the author(s) solely. They do not necessarily reflect the opinions of the World Parkinson Coalition®

https://www.worldpdcongress.org/home/swallow

Has a small trial stumbled upon a way to reverse biological aging?

September 12. 2019    By Maria Cohut

In a small clinical trial, scientists were looking for a means to restore the thymus — the gland that forms and releases key immune cells. By doing so, they actually managed to reverse various aspects of biological aging.

The thymus gland, located between the lungs, is the organ within which T cells — a critical population of immune cells — mature.

This gland also has a peculiarity. After a person reaches puberty, it begins a process of involution, which means that it becomes less and less active and starts to shrink in size gradually.

Studies have shown that thymic involution affects the size of immune cell populations related to it, possibly causing changes to biological mechanisms when people reach their 60s.

Prof. Steve Horvath from the University of California, Los Angeles School of Public Health and colleagues initially set out to see if they could restore function in the aging thymus.

In the study paper they recently published in the journal Aging Cell, they explain that "[t]hymic involution leads to the depletion of critical immune cell populations, [...] and is linked to age‐related increases in cancer incidence, infectious disease, autoimmune conditions, generalized inflammation, atherosclerosis, and all‐cause mortality."

For the reasons outlined above, the researchers organized and conducted what they believe is a first-of-its-kind clinical trial: TRIIM (Thymus Regeneration, Immunorestoration, and Insulin Mitigation).

The study took place between 2015–2017, and the researchers were pleased with the results they achieved. They found that it was possible to restore thymic function and reduce the risk of age-related conditions and diseases linked to poor immune system reaction.

They also had a pleasant surprise. At the end of the trial, the researchers found that the mix of drugs they used to restore the thymus gland had also reversed other aspects of biological aging.

'Significantly reduced' biological age

A person's biological age refers not to how old they are in conventional years, but to how much their biological mechanisms have aged, according to their epigenetic clocks — markers that indicate how changes in various cellular mechanisms have affected gene expression.

For their trial, Prof. Horvath and team recruited 10 healthy adult males aged 51–65. The researchers were able to use and analyze data collected from nine of these individuals.

In the first week of the clinical trial, the researchers gave the participants recombinant human growth hormone (rhGH). In its natural state, rhGH supports many different aspects of cellular health, such as cell growth and regeneration.

Previous studies — some conducted in animals, and others with the participation of individuals with HIV — have uncovered evidence that rhGH could help restore thymus function, as well as immune system effectiveness.

To the regimen of rhGH, the researchers then gradually added the steroid hormone dehydroepiandrosterone (DHEA) and then metformin, a drug that helps increase insulin sensitivity.

Prof. Horvath and team conducted MRI imaging, different blood tests, and epigenetic age tests at various stages of the trial to find out whether their approach had been successful.

The researchers found that they were correct in thinking that the rhGH, DHEA, and metformin combination could restore the thymus gland later in life. They also discovered that the intervention had "turned back" the biological age clocks of the participants. The investigators write:

"

Although, on average, trial volunteer epigenetic ages were lower than their chronological ages at baseline, epigenetic age was nevertheless significantly decreased by treatment [...], with a mean change in [the difference between the epigenetic age and chronological age] after 12 months of about 2.5 years."Though these results are promising and indicate that it may be possible to reverse signs of biological aging, the researchers also caution that the trial sample was very small.

They advise that future studies should aim to replicate these findings in larger cohorts to verify their validity.

The research team also note that their trial received financial support from Intervene Immune, Inc., a company with a specific interest in reversing thymic involution and reversing the aging of the immune system.

https://www.medicalnewstoday.com/articles/326329.php?utm_source=newsletter&utm_medium=email&utm_country=US&utm_hcp=no&utm_campaign=MNT%20Daily%20News%202019-09-12&utm_term=MNT%20Daily%20News

First Look: West Virginia University's Rockefeller Neuroscience Institute

By Paul J. Gough  September11, 2019

Walking through the new WVU Rockefeller Neuroscience Institute's Innovation Center, you get the feeling you're trodding into the future of the treatment of brain disorders and the scientific methods to improve human performance.

One device, with only a handful in the world like it, delivers focused ultrasound from 1,000 different ultrasound emitters in a single helmet that is placed on the head. It has already been used by WVU Medicine doctors to successfully open the blood-brain barrier to allow for better treatment of people with Alzheimer's disease. Another system has the patient puts on a multicolored cap with emitters and a handheld wand delivers transcranial magnetic stimulation to treat addiction and Alzheimer's. And around the innovation center, there's technology from souped-up gaming systems and virtual reality to a cryogenic chamber to speed workout recovery and a system that maps the nervous system, from head to toe.

And that's just scratching RNI's surface.

When the Rockefeller family and WVU Medicine envisioned the WVU Rockefeller Neuroscience Institute, they sought a center that would draw leading experts in the fields of brain science and human performance as well as a place where cutting-edge treatments could be developed and deployed. That's coming to fruition in the WVU Rockefeller Neuroscience Institute, which opened officially earlier this year and has been breaking ground in the field. The finishing touches are being put on the Innovation Center, on the WVU Health System campus in Morgantown, West Virginia, where researchers are working and where patients will be welcomed for the latest advances.

It's a partnership between former U.S. Sen. John D. Rockefeller IV and his family along with WVU Medicine and West Virginia University to bring together care, research and teaching centered in Morgantown but spreading all the way through WVU Medicine's footprint. 

It's led by Dr. Ali R. Rezai, a world-renowned neurosurgeon who has developed innovations to treat paralysis, Parkinson's disease, Alzheimer's disease and other afflictions.

And it's that innovative spirit - and approach from many different specialities, as well as government and industry collaborations - that Rezai is bringing to bear at RNI.

"We're always looking at rapid applications of new technology, and being one of the first in the world to do it," Rezai said. "That's one of our missions: Quickly deploy technology for patients.

RNI and WVU Medicine have been in growth mode, part of a lot of building projects on the Morgantown campus. There are now 145 faculty, 73 residents and postdoctoral fellows and more than 700 clinic, research and administrative staff in four departments: neuroscience, neurology, neurosurgery and behavioral medicine and psychiatry. And there are several current and future RNI facilities. Beyond the Innovation Center, there's also a neuro ambulatory and education center that is being built atop the nearby physician's office center, the Erma Byrd Biomedical Research Center and a behavioral center at Chestnut Ridge. Then there's also a brain and spine hospital that will be built in the parking lot behind the hospital.

https://www.bizjournals.com/pittsburgh/news/2019/09/11/first-look-west-virginia-universitys-rockefeller.html

Early Trial for Prevail’s One-time Gene Therapy PR001 to Start Soon

SEPTEMBER 12, 2019     BY PATRICIA INACIO, PHD IN NEWS.

Prevail Therapeutics will soon start its Phase 1/2 clinical trial evaluating the safety, tolerability, and early efficacy of its one-time gene therapy — called PR001 — for Parkinson’s disease associated with mutations in the GBA1 gene.

The trial is expected to enroll up to 16 people with confirmed GBA1 mutations. Participants will be randomly assigned to receive two escalating doses of PR001, or placebo, administered as a single injection.

The company expects that dosing will start during 2019.

“We are excited to begin dosing patients in our Phase 1/2 clinical trial for PD-GBA this year,” Asa Abeliovich, MD, PhD, founder and CEO of Prevail, said in a press release. “We believe PR001 has tremendous potential to slow or stop disease progression in patients with PD-GBA … who currently have no disease-modifying therapeutic options.”

People with GBA1 mutations have up to a five-fold higher risk of developing Parkinson’s disease. Indeed, estimates point to a link to GBA1 mutations in 7 to 10% of all Parkinson’s cases.

The GBA1 gene contains all the information necessary to produce the enzyme beta-glucocerebrosidase (GCase) — an important component of cells’ recycling factories, called lysosomes. Lack of this enzyme, or its faulty activity, will make cells accumulate toxic substances inside them, which may contribute to the neurodegeneration seen in Parkinson’s disease.

PR001 was designed as a single-dose gene therapy that will provide nerve cells with a fully working copy of the GBA1 gene. This new method uses a modified and harmless version of an adeno-associated virus (AAV9) to deliver the gene to cells, which will then be able to recover GCase function.

This gene therapy is expected to ease Parkinson’s disease symptoms triggered by the mutated gene.

Studies in mice and primates with Parkinson’s disease demonstrated that PR001 was well-tolerated. The gene therapy also was found to promote an increase in GCase enzyme activity, which resulted in reduced accumulation of toxic fatty molecules, and improvements in motor function.

The U.S. Food and Drug Administration (FDA) granted fast track designation to PR001 in July 2019 for the treatment of people with Parkinson’s disease associated with GBA1 gene mutations. The designation accelerates the therapy’s development and may help expedite its approval by providing more frequent meetings with the FDA and discussions about the therapy’s development plan.

https://parkinsonsnewstoday.com/2019/09/12/trial-starting-soon-prevails-one-time-gene-therapy-pr001-parkinsons-gab1-mutations/

Phase 2 Clinical Trial Recruiting People with Early Parkinson’s to Explore Experimental K0706

SEPTEMBER 12, 2019     BY MARTA FIGUEIREDO 

Sun Pharma Advanced Research Company (SPARC) is conducting a Phase 2 clinical study to evaluate the safety and effectiveness of its experimental Abl inhibitor K0706 in people with early Parkinson’s disease.

The trial, which is still recruiting, is estimated to enroll approximately 504 participants, age 50 or older, who have been diagnosed with “clinically probable Parkinson’s” and who started experiencing symptoms within three years before trial screening. Participants will be assigned randomly to receive one of two doses of K0706 or a placebo, taken daily for nine months.

CereScan, a subsidiary of CereHealth Corporation dedicated to brain imaging and data analytics, will contribute to the study by providing specialized brain scans of study participants.

“We are obliged to offer our services in the research, and ever hopeful that one day soon we will count Parkinson’s Disease among those where advancements in research and technology are combined to find a cure,” John Kelley, CereHealth’s chairman and CEO, said in a press release.

K0706, also known as SCC – 138, is an orally available compound that works as a suppressor of an enzyme called Abl tyrosine kinase, whose activity has been linked to several processes associated with Parkinson’s development, such as oxidative stress and alpha-synuclein-induced neurodegeneration.

Prior studies have demonstrated that K0706 prevents loss of dopamine-producing neurons — the brain cells most affected by Parkinson’s — and eases  behavioral symptoms in animal models of the disease.

Results of SPARC’s pivotal Phase 1 study (NCT02970019), which evaluated the safety and tolerability of ascending doses of K0706 in Parkinson’s patients, showed that the therapy was well-tolerated and allowed the selection of two K0706 doses likely to produce therapeutic effects.

The double-blind, placebo-controlled Phase 2 study (PROSEEK, NCT03655236), also sponsored by SPARC, is now evaluating the safety and effectiveness of the two selected K0706 doses in people with early Parkinson’s disease who are not receiving dopaminergic therapy.

The study’s primary goal is to assess changes in patients’ motor functions  through the Movement Disorders Society Unified Parkinson’s Disease Rating Scale (MDS-UPDRS) Parts II and III. As an exploratory goal, researchers also will assess K0706’s impact on the health of dopamine-producing neurons in Parkinson’s patients through the Dopamine Transporter Single Photon Emission Computed Tomography (DaT SPECT) brain imaging.

DaT SPECT is a highly sensitive imaging tool capable of distinguishing people with Parkinson’s from unaffected people even in early stages of the disease. It uses a tracer to “tag” dopamine transporters in the outer membrane of dopamine-producing neurons, which is considered to be a hallmark feature of healthy cells. DaT SPECT images will help determine the density of healthy dopamine-producing neurons in a patient’s brain.

CereScan’s clinic in Littleton, Colorado, will provide DaT SPECT scans of the study participants. It will serve as the SPECT imaging center for Denver Neurological Research, an independent, private clinical research site that is participating in the trial.

“The staggering costs and prevalence in one of our most vulnerable populations, the aged, merits a sustained concentration on the causes of this debilitating disease, and a focus on finding new treatments to staunch its progression,” Kelley added.

Results of this proof of concept trial, if found to be positive, are expected to support the advancement of K0706 into Phase 3 clinical studies in Parkinson’s patients.

To learn more about the trial, visit:https://clinicaltrials.gov/ct2/show/NCT03655236

https://parkinsonsnewstoday.com/2019/09/12/phase-2-trial-is-recruiting-people-with-early-parkinsons-to-test-k0706/

The Michael J. Fox Foundation Launches New Guide, "Navigating Cognitive Changes in Parkinson's Disease," to Fill Knowledge Gaps and Encourage Dialogue on Under-Addressed Symptom

SEPTEMBER 12, 2019

- With an estimated 6 million people worldwide living with Parkinson's, and the global prevalence expected to double by 2040, resources to better understand cognitive changes in the disease are urgently needed

- New guide -- authored by the Foundation's Vice President of Medical Communications and movement disorder specialist Rachel Dolhun, MD -- provides clarity around different forms of cognitive changes including mild cognitive impairment, Parkinson's dementia and dementia with Lewy bodies

- Patients and families encouraged to download the free guide at michaeljfox.org/cognitionguide

NEW YORK ---As part of its mission to provide the Parkinson's community with high-quality resources on every aspect of the disease, The Michael J. Fox Foundation for Parkinson's Research (MJFF) today launches "Navigating Cognitive Changes in Parkinson's Disease." The new guide, available at michaeljfox.org/cognitionguide, educates patients and families about potential thinking and memory symptoms in Parkinson's, provides practical strategies to work through cognitive changes, and shares the latest research and therapies.

Guide Developed in Collaboration with Parkinson's Experts

"Navigating Cognitive Changes in Parkinson's Disease" was written by MJFF Vice President of Medical Communications and movement disorder specialist Rachel Dolhun, MD. The guide was developed in collaboration with experts — patients and families who live with Parkinson's and the clinicians who care for them. Through three working groups comprised of MJFF's Patient Council, care partners, social workers, and movement disorder and cognitive physicians, the Foundation assembled varied perspectives and expertise to source guide topics, themes, and tips. Care partners also completed a questionnaire to shed light on the challenges experienced by families living with dementia.

"I regularly hear from patients that dementia is one of the most worrisome symptoms of Parkinson's. And yet, we don't talk about it enough," said Rachel Dolhun, MD. "The goal of this guide is to encourage people with Parkinson's and their loved ones to learn more about cognitive changes and to take action — whether that's opening a discussion to lessen fear and improve care or practicing healthy habits to boost brain health. There's a lot you can do today about cognitive changes." 

In the comprehensive 33-page guide, patients and families can explore:

• Easy-to-understand definitions of cognition and dementia, and the differences between mild cognitive impairment, Parkinson's dementia, and dementia with Lewy bodies; 
• Steps and activities to boost brain health; 
• Practical tips to open the conversation about cognitive changes; 
• Strategies to work through cognitive changes in PD; and 
• Information on the latest treatments and ongoing research.

The free guide is available to download at michaeljfox.org/cognitionguide. A webinar, featuring Dr. Dolhun and Parkinson's community members and experts, also will be available on Thursday, September 19. Register for the free webinar here.

"Navigating Cognitive Changes in Parkinson's Disease" was made possible by The Albert B. Glickman Parkinson's Disease Education Program, whose support allows MJFF to furnish high-quality educational content for the Parkinson's community while preserving its track record of efficiency in stewarding donor-raised contributions for high-impact research. 

About Cognitive Changes in Parkinson's and the State of Research 

Not everyone with Parkinson's disease (PD) will experience thinking and memory changes. Estimates vary, but of the 6 million people who live with the disease worldwide, 40 percent may be affected by dementia and 25 percent may experience milder cognitive changes. Our population is aging, and according to a 2018 study, the global Parkinson's prevalence is projected to double by 2040. With an expected increase in the number of people affected by PD, resources to better understand and navigate PD cognitive changes are urgently needed. 

"Many of us with Parkinson's have had moments of losing our car keys, but what about leaving the burners on? What's Parkinson's, and what's normal aging?," said Dave Iverson, broadcast journalist and founding MJFF Patient Council member. "More information is empowering. The Patient Council welcomed the opportunity to provide input on this new guide in order to offer families the knowledge and resources to talk about a sensitive topic that's sometimes inadequately addressed at home or even in the doctor's office."

The Michael J. Fox Foundation is committed to helping patients and families navigate everyday life with Parkinson's disease and connect to ongoing research through practical, educational, and accessible resources. Stigma and misperceptions about Parkinson's and its symptoms can hinder much-needed research into understanding the disease and how to treat and, ultimately, prevent it. Education catalyzes participation in clinical trials and speeds progress. 

Researchers are working to better understand, measure, and treat cognitive changes and dementia in Parkinson's. Since its inception in 2000, MJFF has funded approximately $39 million in cognition and dementia research across Parkinson's and related disorders. The Foundation's online clinical trial matching platform, Fox Trial Finder (www.foxtrialfinder.org), which connects volunteers with studies that urgently need them, lists more than 100 studies investigating cognitive deficits. And through MJFF's Parkinson's Progression Markers Initiative, nearly 1,400 participants — with and without Parkinson's — have contributed data through regular cognitive assessments, giving researchers critical information on cognition and PD. 

Investigators also are comparing Parkinson's disease dementia to Alzheimer's and other types of dementia to better distinguish and treat these conditions. Biomarkers Across Neurogenerative Disease (BAND) — a partnership between MJFF, the Alzheimer's Association, Alzheimer's Research UK, and the Weston Brain Institute — has funded more than $3 million to 20 international grants to enhance dementia research and care. 

"As the population ages and the number of people impacted by Parkinson's increases, so does the need to open a dialogue about one of the most troubling aspects of the disease," said Todd Sherer, PhD, MJFF's CEO. "More resources, research, and collaboration can help us address the complex issue of cognitive decline and support people who experience it. Our Foundation continues to deploy strategic investments to advance scientific breakthroughs for the next generation of Parkinson's treatments."

About The Michael J. Fox Foundation for Parkinson's Research

As the world's largest nonprofit funder of Parkinson's research, The Michael J. Fox Foundation is dedicated to accelerating a cure for Parkinson's disease and improved therapies for those living with the condition today. The Foundation pursues its goals through an aggressively funded, highly targeted research program coupled with active global engagement of scientists, Parkinson's patients, business leaders, clinical trial participants, donors and volunteers. In addition to funding more than $850 million in research to date, the Foundation has fundamentally altered the trajectory of progress toward a cure. Operating at the hub of worldwide Parkinson's research, the Foundation forges groundbreaking collaborations with industry leaders, academic scientists and government research funders; increases the flow of participants into Parkinson's disease clinical trials with its online tool, Fox Trial Finder; promotes Parkinson's awareness through high-profile advocacy, events and outreach; and coordinates the grassroots involvement of thousands of Team Fox members around the world. 

 SOURCE The Michael J. Fox Foundation for Parkinson’s Research

Related Links

www.michaeljfox.org 

https://www.prnewswire.com/news-releases/the-michael-j-fox-foundation-launches-new-guide-navigating-cognitive-changes-in-parkinsons-disease-to-fill-knowledge-gaps-and-encourage-dialogue-on-under-addressed-symptom-300916781.html

Film Spotlights Rutgers Class to Empower Parkinson's Sufferers Through Dance

By Stephen Whitty    September 11, 2019

Project by the Documentary Film Lab at the Mason Gross School of the Arts explores class that helps people reclaim control of their bodies

The Dance & Parkinson’s program at Rutgers Mason Gross School of the Arts uses music and movement to empower people with the disease.

To be a dancer is to be in tune with your own physicality. To be fully aware of every muscle, in control of every movement. To be your body’s master.

It is a feeling most people with Parkinson’s disease can only remember.

A degenerative disorder of the central nervous system, Parkinson’s can cause stiffness, shaking and problems with balance.  It also may leave people self-conscious, and reluctant to leave their homes.

The Dance & Parkinson’s program at Rutgers Mason Gross School of the Arts, however, uses music and movement to empower them. And a new film from the school’s Documentary Film Lab captures just how moving, and joyful, that process can be.

“Sometimes the class is hard to get started, the folks schmooze so much,” jokes Jeff Friedman, director of the school’s MFA dance program. “That’s something I hadn’t expected – the social connections this class creates. One man told me, ‘This is the only thing I come out of the house to do.’”

The free classes are offered in partnership with the American Parkinson's Disease Association-NJ Office at Robert Wood Johnson University Hospital's Fitness and Wellness Center in New Brunswick as well as at the Mason Gross Performing Arts Center on Rutgers' Douglass campus based on concepts developed by Pam Quinn. A dancer and choreographer, she was first diagnosed with the disease more than 20 years ago. 

“It took me a long time to come to terms with it,” Quinn admits. “My entire identity revolved around movement. But then I began to think, ‘I know how my body works. My dance training gives me tools. I can thwart the reality of this.’”

Later, beginning with the PD Movement Lab in Brooklyn, Quinn started bringing her ideas to nondancers, too.

With the help of instructors, and a playlist that ranges from Glenn Miller to Talking Heads, participants reclaim some control over their own bodies.

With the help of instructors, and a playlist that ranges from Glenn Miller to Talking Heads, participants at the Rutgers sessions reclaim some control over their own bodies, stepping around the floor, moving in unison to the beat. 

“Dance is particularly suited to treating Parkinson’s,” Quinn explains. “It involves music, which is part of what’s called a cueing system, a prompt that facilitates movement.  It also involves visual cues, and an element of touch.”

“Unlike regular physical therapy, which uses body parts in a mechanistic approach, it’s a holistic experience,” says Friedman, whose students often work with the enrollees. “You’re using your mind and your body, challenging your whole neurological system.”

The subject immediately intrigued the young filmmakers at the Documentary Film Lab, who chose it as their project. The topic, however, provided a variety of challenges.

“Whenever you’re dealing with old age or disability, you are treading in delicate terrain,” says Thomas Lennon, an Oscar-winning filmmaker and director of the lab. You have to push to get into the nooks and crannies of people’s private lives, but not push so much that you become this bullying presence. It’s a balancing act, in the filming and in the editing, and it was my job to help the students navigate that.”

The recently finished film, Dance | Parkinson’s, runs about six minutes. Lennon plans to enter it in film festivals, and then explore a way to make it available to the public. When he does, viewers will see his students “performing at the highest level,” Lennon says.

                                    

https://youtu.be/DARGXKpSDjo 

The project by the Documentary Film Lab at the Mason Gross School of the Arts explores a class that helps people reclaim control of their bodies

They’ll also see the program’s participants doing the same.

As important as the emotional support or physical therapy it offers, however, this is still a dance class. It involves personal expression, performance, aesthetics. Quinn and Friedman find that artistic aspect particularly inspiring and liberating. 

“I’m very interested in ‘physically integrated dance,’” Friedman says. “Too often we limit ourselves and our work to what we might call ‘able-bodied dancers.’ Other people become invisible. This is about creating a more sensitive approach, deepening our artistry to embrace all of life’s challenges. After all, we’re all aging. We’re all pretty much on our way to some sort of disability.”

In addition to running workshops at Rutgers and teaching at the Mark Morris Dance Studio in Brooklyn, Quinn also creates dances for differently abled performers. In May, she choreographed a piece for 20 people, 14 of whom had Parkinson’s. Another piece, this one featuring 50 dancers, was performed in June, at the opening night of the World Parkinson Congress in Kyoto.

It’s all become a hugely fulfilling part of Quinn’s life. And no one is more surprised than she.

“I was reticent at first to get involved in this sort of therapy,” Quinn admits. “I thought, ‘Do I really want to be surrounded by PD all the time? Is it going to be a downer?’ But it’s been more rewarding than I ever expected. And while there’s a part of me that still rejects my disease, rejection has its benefits, too, because with that comes a certain defiance. Not denial – defiance. And that gives you the energy to fight on.”

https://news.rutgers.edu/film-spotlights-rutgers-class-empower-parkinsons-sufferers-through-dance/20190909#.XXpycS2ZN0Q