MJFF Nationwide Event Series ‘Parkinson’s IQ + You’ Kicks Off This Fall

Parkinson's IQ + You

A new nationwide event series aims to empower people with Parkinson’s (PD) and their caregivers to manage the disease, learn about research participation, and plug into local resources.

Called “Parkinson’s IQ + You,” the effort is presented by The Michael J. Fox Foundation (MJFF). The events seek to support PD families in learning more about all facets of the disease — what a comprehensive care team looks like, how to achieve optimal communication between patients and physicians, the latest in treatments, and the benefits of joining clinical trials.

Kick-off events are slated this year for Atlanta on Sept. 14, and southern California, in Anaheim, on Dec. 14. More sessions will come next year, including one in Phoenix on Jan. 11. Registration is free. This year’s events will be hosted by Larry Gifford, a patient and host of the “When life gives you Parkinson’s” weekly podcast.

“Between its symptoms and progression, Parkinson’s can present unique challenges for those of us who live with the disease, but also for our loved ones who support us,” John L. Lipp, a writer, nonprofit executive director, and Parkinson’s patient, said in a news release.

“I often say, ‘I can’t control my Parkinson’s, but I can control how I respond to it.’ Parkinson’s IQ + You will offer people in the community, including me and my husband, an opportunity to learn from other patients and families and from experts in the field, so that we can turn education today into action tomorrow,” Lipp said.

Crafted to support care partners and people with Alzheimer’s at every disease stage, the series will feature a variety of panel participants, including patients and their caregivers, to reflect the community’s diversity and the disorder’s variability. The organizers note that PD symptoms and progression vary significantly, making each Parkinson’s experience unique.

Each full-day event will feature interactive programming, as well as an exposition of local resources. Called Parkinson’s Partner Expo, this portion will include representatives from movement disorder centers and patient advocacy organizations, speech and physical therapists, and clinical trial teams.

There also will be panels and sessions on topics such as understanding Parkinson’s and living well with it. During a related forum called “If I Knew Then What I Know Now,” a patient and caregiver will share experiences and strategies. There also will be a session on “Building Your Care Team.”

To help people with Parkison’s and their caregivers understand the advantages of seeing a specialist, what to expect during visits, and how to optimize each one, each event will feature a demonstration of what a typical appointment might be.

“Patients are the force driving our research priorities and our urgent mission to end Parkinson’s,” said Todd Sherer, PhD, the foundation’s CEO. “The foundation is committed to ensuring all people with Parkinson’s, and their families, are empowered to make decisions about treatment and care. And we want to work side by side in partnership with patients to advance Parkinson’s research.”

The series includes complimentary meals, and is funded by Acadia Pharmaceuticals, with additional support from MJFF biotech and pharmaceutical partners.

“The Parkinson’s IQ + You program has been uniquely designed to bring much-needed support and information to the Parkinson’s community,” said Rob Kaper, MD, Acadia’s senior vice president and global head of medical affairs.

“We look forward to this national series of events across the country, which will offer attendees the opportunity to interact with healthcare experts and other people with Parkinson’s and their families, and ask important questions about disease management,” he said.

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Acadia Supports Events to Mark Parkinson’s Disease Awareness Month in U.S.

Parkinson's Awareness Month activities, Acadia

Acadia Pharmaceuticals is marking Parkinson’s Awareness Month by supporting a host of events and activities in April throughout the U.S. Although some events have occurred, several are annual events needing participation.

“We encourage patients and their families to attend an event, which includes important resources to help them navigate their unique journey with Parkinson’s,” said Steve Davis, Acadia’s CEO, in a news release.

“We are collaborating and pledging our support to Parkinson’s patient advocacy organizations across the country to help make educational events possible year round, because we understand how critical this support and engagement can be for patients and their caregivers,” he said.

World Parkinson’s Awareness Day was April 11.

Sponsored events include:

  • Moving Day walks hosted by the Parkinson’s Foundation. Created in 2011 to celebrate patient movement, and to raise funds and awareness of a disease that affects nearly one million U.S. residents and 10 million people globally, the nationwide events are scheduled for April 27 through May 19.
    The event features a family-friendly walk course, a children’s area, a caregivers’ relaxation tent, and a “movement pavilion” with yoga, dance, Pilates, Tai Chi, and other activities. The money raised helps the foundation deliver quality care, fund cutting-edge research, and provide free resources for patients and their families. To date, the annual walks have raised nearly $22 million. Click here to find a walk or to start one.
    ”Moving Day walks are a critical component of the Parkinson’s Foundation’s efforts to raise money and help improve life for people affected by Parkinson’s disease,” said John Lehr, the foundation’s president and CEO. “We appreciate Acadia’s support to help make events including Moving Day possible.”
  • The American Parkinson’s Disease Association’s Optimism Walks. Designed to mobilize and inspire, each walk of up to three miles is an opportunity for patients and advocates to help the organization raise funds to provide support, education, and research. To date, walks are slated through October. Go here to register or to find a walk.
  • The Davis Phinney Foundation for Parkinson’s Victory Summit. Held this year in Austin, Texas, on April 13, the upbeat educational and motivational symposium featured presentations from leading movement disorder neurologists and therapists.
  • The Parkinson’s Foundation’s Centers for Excellence Leadership Conference brought together all 45 centers to discuss network updates, novel investigations, and the latest Parkinson’s topics. Held this year from April 3–5 in Chandler, Arizona, the conference fostered new ideas and partnerships among clinicians and scientists.
  • The Parkinson’s Association of San Diego Step by Step 5K Walk on April 7 helped the association offer critical resources to roughly 60,000 patients and caregivers in San Diego County, California.

Acadia also continues its support for The Michael J. Fox Foundation (MJFF) Parkinson’s Disease Education Consortium, an alliance of biotechnology and pharmaceutical companies committed to providing high-quality educational resources for the Parkinson’s community.

Acadia is focused on developing and commercializing novel therapies to treat unmet medical needs in central nervous system diseases such as Parkinson’s.

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Parkinson’s Foundation to Host, Broadcast Summit for Caregivers in English, Spanish

Parkinson's summit

With a focus on self-care and caregiving, the Parkinson’s Foundation is hosting a free bilingual summit for those who attend to the daily needs of Parkinson’s disease (PD) patients.

Called Cumbre Para Cuidadores (Summit for Caregivers), the all-day event Dec. 1 at the Sheraton Grand Phoenix in Phoenix, Arizona, will be broadcast online in English and Spanish to satellite locations nationwide. It will also be available to view via personal computer, tablet or smartphone, and recorded for future viewing.

With a focus on collaborative care, the summit is for anyone caring for someone living with Parkinson’s, such as a spouse, partner, child or friend. It aims to provide encouragement, education and resources.

Led by field experts, the sessions will include Introduction to Collaborative Care, Intimacy and PD, Communication and Coping Strategies, and Collaborative Caregiving in Action.

Attendee will receive the foundation’s Caring and Coping workbook, designed to help guide caregivers of patients at any stage. The book includes tips and tools and focuses on caring for the patient and oneself.

John Lehr, president and chief executive officer of the Parkinson’s Foundation, said caregivers often pay much more attention to the person with Parkinson’s than to themselves.

“This event is a critical component of our efforts to better understand and address the needs of today’s caregivers and to recognize the work they are doing to support their loved ones living with PD,” Lehr said in a news release.

Leslie Peterson, a member of the summit committee, said it also offers an opportunity for caregivers who have common experiences to be together. “Taking care of ourselves so that we can care for our loved ones is so important,” she said. “Everyone will leave this event with a feeling of positivity and the knowledge that they are not alone.”

Go here to register for the Phoenix summit or to register for satellite locations in: Columbus, Ohio; Fargo, North Dakota; Jacksonville, Florida; the Kansas City area; Manhattan, Kansas; Milwaukee, Wisconsin; the Minneapolis, Minnesota area; Orange County, California; Rochester, New York; San Diego, California; the San Francisco, California area; South Florida; the St. Paul, Minnesota area; St. Petersburg, Florida, Syracuse, New York, and Tampa, Florida. Some locations, including the Sheraton Grand, will provide respite care or programs for loved ones with Parkinson’s.

If there is no satellite session nearby, caregivers are encouraged to host viewing parties. Go here for registration, technology guidelines, funding information, and how to obtain printable materials and sample promotional items for attendees. 

To register from a personal computer, tablet or smartphone, go here for English and here for Spanish.

The summit is sponsored by Acadia Pharmaceuticals, the developer of Nuplazid (pimavanserin), the only FDA-approved treatment of psychosis associated with Parkinson’s disease.

For more information about the summit, call 800-473-4636, or e-mail

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Nuplazid’s Mortality Risk Not Different from Seroquel, Combo Treatment, Study Finds

Treatment with Nuplazid (pimavanserin) does not lead to a different mortality risk compared to the antipsychotic medication Seroquel (quetiapine), or to combination treatment with both medications, in patients with Parkinson’s psychosis, according to results from a large study.
The study, “Mortality in patients with Parkinson disease psychosis receiving pimavanserin and quetiapine” was published in the journal Neurology.
In April 2016, Acadia Pharmaceuticals’ Nuplazid became the first therapy approved by the U.S. Food and Drug Administration (FDA) for hallucinations and delusions associated with Parkinson’s psychosis.
However, two years later, a CNN report cited an analysis by the nonprofit Institute for Safe Medication Practices, which found a total of 700 deaths in the FDA’s Adverse Event Reporting System — including 500 among Parkinson’s patients in which Nuplazid was the only therapy likely involved — in the nine months following Nuplazid’s arrival on the market in June 2016.
Now, researchers at University of California San Diego School of Medicine explored the medication’s safety further. “We wanted to better understand and assess the risks of using pimavanserin (Nuplazid) within our own patient community, either alone or in combination with other commonly prescribed medications,” Fatta B. Nahab, MD, the study’s senior author, said in a press release.
Besides Nuplazid, the team focused on Seroquel, a second-generation antipsychotic (SGA), which is often used to treat Parkinson’s psychosis. Results were mixed. Use of Seroquel and other SGAs led to concerns about increased morbidity and mortality in patients with dementia or those with Parkinson’s, prompting an FDA black box warning.
Unlike Seroquel, Nuplazid does not affect dopamine receptors, so it does not interfere with the effectiveness of Parkinson’s treatments for motor symptoms.
The team conducted a retrospective analysis of 4,478 UC San Diego Health patients with Parkinson’s, of whom 676 were being prescribed Nuplazid, Seroquel, or both, between April 29, 2016 and April 29, 2018.
Results showed that patients treated with Nuplazid alone (113 patients, mean age 75.9 years) had a lower mortality percentage when compared to those treated with quetiapine only (505 patients, mean age 75.2 years), or with both compounds (58 patients, mean age 74.1 years ). However, the differences were not statistically significant.
When compared to 784 Parkinson’s patients not on these medications (mean age 80 years), the results revealed a significantly greater risk (74%) of mortality in the Seroquel-only group and a trend toward increased risk in the combination treatment group.
“It’s reasonable to assume, however, that individuals requiring these medications have greater disease severity and are at a higher risk of complications and death,” Nahab noted.
A subset of the patients receiving both medications exhibited the highest rate of mortality, although not statistically different. Importantly, the team noted that the combination therapy’s safety is not yet established, as the pivotal Phase 3 trial of Nuplazid (NCT01174004) excluded individuals on antipsychotics.
“Our findings provide the largest comparative report of mortality risk in [Parkinson’s psychosis],” researchers wrote.
However, Nahab noted limitations on the study’s design and nature, which precluded the determination of cause of death or duration of antipsychotic treatment.
“While the results pertaining to [Nuplazid] provide some reassurance for clinicians, patients, and families, future studies

Source: Parkinson's News Today

How Hallucinations Affect Patients and Caregivers Over Disease Course Focus of Study

hallucinations and disease

Visual hallucinations can be common in Parkinson’s patients and others with dementia, but the degree of distress they cause is greatly influenced by the person’s ability to understand and consider them — and have the cognitive resources to do so, a study reports.

Likewise, the tailored support given patients needs to reflect their ability to understand and manage this disease symptom.

The research, “Visual hallucinations in dementia and Parkinson’s disease: A qualitative exploration of patient and caregiver experiences,” was published in the International Journal of Geriatric Psychiatry.

Visual hallucinations — seeing something that others cannot — are a typical manifestation of Parkinson’s disease psychosis, and of dementias like those associated with Alzheimer’s, vascular diseases, and Lewy body dementia (LBD).

Antipsychotic medications like Nuplazid (pimavanserin) — an approved treatment for Parkinson’s psychosis, developed by Acadia Pharmaceuticals — and Clozaril (clozapine), approved to treat severe schizophrenia but used off-label for these patients, have been found to ease symptoms of Parkinson’s disease psychosis without impairing motor function in double-blind, placebo-controlled clinical trials.

But not all psychosis patients can use these medications.

Visual hallucinations are linked to diminished well-being, greater caregiver burden and poorer functional skills, as well as higher rates of nursing home admissions and faster cognitive impairment. How such outcomes might be prevented or slowed in psychosis patients, however, is largely unexplored.

Researchers used qualitative methods to understand the needs, experiences, and coping strategies of Parkinson’s and dementia  patients with visual hallucinations, and their impact on caregivers.

They interviewed 11 such Parkinson’s patients and 10 with dementia, and people who served as informal caregivers (9 for Parkinson’s and 11 for dementia patients).

Most patients reported having  hallucinations for at least one year, the researchers wrote. A difference noted: Parkinson’s patients tended to see images of people and animals not actually present, while dementia patients “tended to experience people or ‘presence’ hallucinations.”

Patients were asked about their experiences and interpretations of such hallucinations, their impact on relationships and daily life, and information or support they had asked for or received regarding them.

Caregivers were asked to reflect upon their own reactions and any support they might have received.

All patients were assessed for vision, cognition, and motor function skills.

“Differences in the VH [visual hallucinations] experience between persons with dementia and PD were less striking than the overall similarities across conditions at equivalent stages of cognitive and insight impairment,” the researchers wrote.

Patients reported disease aspects such as loss of independence [related to motor decline] and depression as more concerning and difficult than hallucinations, while those with poorer cognitive abilities voiced greater distress with visual hallucinations.

Three overall themes emerged in the study:

  • Insight (comprehension) and distress: The better understanding a patient had of visual hallucinations (i.e., recognizing them as a disease symptom), the less threaten they felt by them, and the more able they were to accept them as part of their life.
  • Caregiving reactions: Caregivers’ reactions were closely related to a patient’s ability to understand hallucinations.  When they felt patients knew they were not real, a simple reassurance was a sufficient reaction. As patients declined, managing visual hallucinations become more challenging.
  • Discussions and support:  Patients generally avoided discussing or seeking support for visual hallucinations because of feelings of being “abnormal,” and the possible stigma they carried. Others either did not think them an important disease symptom, or doubted such discussions would not achieve anything and bring relief.

An ability to understand and distinguish a visual hallucination from reality — called “insight” by the research team — influenced how the threat of such hallucinations was perceived and whether acceptance occurred over time. Reactions to visual hallucinations and coping strategies varied as insights changed with disease progression.

Of note, acceptance came mainly through self-realization and through discussions with caregivers.

“Irrespective of the clinical context, tailored support is required that takes into account the [patient’s] degree of insight and cognitive function,” the researchers wrote.

“Support in early stages should focus on raising awareness of VH, symptom disclosure, stigma reduction, and contact with others affected. In later stages, the focus shifts to informal caregiver needs and a flexible approach to reassuring those affected,” they added.

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Source: Parkinson's News Today

Better Biomarkers Needed to Diagnose, Predict Risk of Mild Cognitive Impairment

Parkinson's mild cognitive impairment

There still are no reliable biomarkers for early detection, or to characterize and predict risk of dementia, in Parkinson’s disease, according to a recent analysis.

Several studies on the cognitive deficits, progression to dementia, potential biomarkers and the mechanisms underlying Parkinson’s disease mild cognitive impairment (PD-MCI) were analyzed by University College London researchers in the review study “Mild Cognitive Impairment in Parkinson’s Disease—What Is It?,” which was published in the journal Current Neurology and Neuroscience Reports.

Large-scale studies have shown that PD-MCI is not only important, but also common, even at the earliest stages of Parkinson’s disease. In fact, MCI signs can be detected before the onset of Parkinson’s motor symptoms.

About half of Parkinson’s patients with cognitive impairment will progress to dementia in the first 10 years after diagnosis. But considerable variation exists among this patient population regarding the type of cognitive domains affected, the timing, severity and risk of progression to dementia.

Accordingly, PD-MCI is emerging as an intermediate stage between normal cognition and dementia, similarly to the stage of amnestic mild cognitive impairment in Alzheimer’s disease.

Epidemiological studies report that 25 to 50 percent of Parkinson’s patients have MCI, depending on the population and the clinical setting. Identifying individuals with early signs of PD-MCI or at risk of dementia is important to provide early interventions, estimate prognosis, and discover therapeutic targets.

In an effort to clarify the diagnosis of PD-MCI, a task force from the International Parkinson and Movement Disorder Society (MDS) provided a unified definition. According to the new criteria, PD-MCI is defined as an “insidious decline in cognitive abilities reported by patient or informant or observed by the clinician, not caused by other comorbidities.”

Unlike dementia, MCI deficits are detectable, but do not interfere with patients’ autonomy.

The nature and severity of PD-MCI is quite variable. The dominant manifestation does not involve memory. But there are other subtypes with deficits in attention, memory, executive function, psychomotor speed and visuospatial abilities. In some people the deficits can involve multiple cognitive domains.

The MDS has recommended a battery of tests to assess involvement of single or multiple domains and report exactly which domains are affected.

In general, patients with PD-MCI are at higher risk of progressing to dementia than Parkinson patients without MCI. Importantly, studies report that 11 to 28 percent of patients with PD-MCI revert to normal cognition during follow-up.

The variability of these results is likely to reflect differences in study populations, assessment methods and definitions.

Some factors can increase risk of cognitive deficits in Parkinson’s, including being older than 70, akinetic rigid phenotype (freezing and/or falls), poor verbal fluency and higher rates of comorbidities. Higher rates of progression to dementia are associated with older age, depression and a non-tremor clinical manifestations.

Exploring biomarkers

Biomarkers such as amyloid beta protein in the cerebrospinal fluid, and magnetic resonance imaging of the brain, may become important for providing insights into mechanisms of cognitive involvement and for accessing disease progression.

The mechanisms underlying PD-MCI likely involve a combination of factors. Brain aggregates of the proteins alpha synuclein, beta amyloid and tau — the latter two also characteristic of Alzheimer’s disease —  are likely to play a role.

Besides, some studies suggest that changes in specific neurotransmitters — chemical messengers used to communicate between neurons, including acetylcholine, noradrenaline and dopamine — also contribute to cognitive impairment.

Some questions regarding PD-MCI remain unresolved. One of them is the distinction between dementia with Lewy bodies (intracellular accumulations of alpha synuclein) and Parkinson’s dementia.

Dementia with Lewy bodies emerges early, before or within the first year of Parkinsonism, while Parkinson’s dementia is defined as a progressive decline appearing at least one year after motor symptoms are noticeable.

However, given the reports of people with cognitive deficits even before characteristic manifestations of Parkinson’s, perhaps cognitive impairments are the first signs of Parkinson’s disease and may start earlier than believed.

Some studies report that some PD-MCI sub-groups, particularly those with deficits in visuospatial performance, are at the highest risk of dementia.

This underscores the need for better assessment methods and biomarkers of PD-MCI to allow well-defined characterizations of the cognitive deficits and predict who is more prone to dementia.

Although the antipsychotics Nuplazid (pimavanserin) and Clozaril (clozapine) are the only therapies shown to improve Parkinson’s disease psychosis (PDP) symptoms without impairing motor function, there currently are no pharmacological treatments specifically for PD-MCI.

The effect of current experimental therapies on cognition is unknown. Some studies suggest that cognitive training can improve overall cognition in Parkinson’s patients, although the effect seems small.

Physical exercise shows more promising results. Several studies report that moderate intensity aerobic exercises performed two to three times a week lead to some improvement in executive and language functions.

However, Acadia Pharmaceuticals, Nuplazid’s manufacturer, is planning to conduct additional studies of the therapy in PD psychosis patients with a broader range of cognitive abilities and formal cognitive diagnoses, including mild cognitive impairment and dementia.

“Maintaining wide definitions, with poorly differentiated cognitive profiles, prevents accurate comparisons across studies,” researchers wrote. “There is clearly a need for better cognitive phenotyping to enable well-defined sub-groups that are more likely to show similar rates of disease progression.”

“Recognizing the earliest stages of cognitive involvement will allow disease stratification and personalized treatment, with the potential for early intervention. It will enable better-powered clinical trials, and potential outcome measures, ultimately to develop treatments to prevent the progression of dementia in PD,” the review concluded.

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Source: Parkinson's News Today

Nuplazid and Clozaril Are Most Reliable Parkinson’s Psychosis Therapies, Review Finds

Parkinson's psychosis therapies

The antipsychotics Nuplazid (pimavanserin) and Clozaril (clozapine) are the only therapies shown to improve Parkinson’s disease psychosis (PDP) symptoms without impairing motor function, in double-blind, placebo-controlled clinical trials, according to a review.

The study, “Pharmacological interventions for psychosis in Parkinson’s disease patients,” was published in the journal Expert Opinion on Pharmacotherapy. 

Parkinson’s disease psychosis is a non-motor symptom that causes patients to experience hallucinations and delusions. More than half of Parkinson’s patients will develop psychosis over the course of their disease.

While hallucinations — seeing, hearing, or feeling things that do not exist — are usually harmless, with no associated emotion, delusions — distorted interpretations of reality — are usually paranoid, creating stressful situations.

Researchers believe the risk factors of Parkinson’s disease psychosis include medication, disease duration, dementia, and delirium — a short-term, reversible symptom usually caused by abnormalities in metabolism, medical conditions, or reactions to medication.

In most cases, Parkinson’s-related psychosis is believed to be a side effect of the medication to treat Parkinson’s. For that reason, treatment involving medication reduction, which can result in aggravated motor symptoms, is only performed when psychosis symptoms become a problem for the patient or caregivers.

In his report, the author argues that before doctors evaluate medication reduction, medical conditions — specially infections — that can cause psychosis should be treated, and psychoactive medication — such as antidepressants, pain killers, and anti-anxiety medication — reduced, if possible.

There is no consensus on the order in which Parkinson’s medications may be reduced, or the speed at which they should be reduced. Clinicians must make those decisions based on the specifics of each patient and their reaction to therapy.

After reducing Parkinson’s medication towards lower levels that can be tolerated by patients, doctors may recommend the use of antipsychotic drugs, such as Nuplazid (pimavanserin), Clozaril (clozapine), or Seroquel (quetiapine, or QTP), to balance abnormal chemical levels in the brain.

Nuplazid and Clozaril are the only therapies which have seen their efficacy supported by double-blind, placebo-controlled clinical trials. Both were shown to reduce psychosis symptoms without impairing motor function.

Nuplazid, the only FDA-approved treatment for PDP, takes four to six weeks to show benefits. On the other hand, Clozaril takes only one week to show responses, but requires frequent blood tests, which makes it inconvenient for elderly patients.

These tests are meant to monitor neutropenia, or reduced levels of neutrophils — a type of white blood cell. This adverse event is reported in some patients under Clozaril.

As for Seroquel, double-blind, placebo-controlled clinical trials showed that it does not improve psychotic symptoms in PDP, even though it does not affect motor function. The author noted that, interestingly, despite the non-positive results in those trials, he and other Parkinson’s experts often use it and find it useful to treat PDP.

Two other antipsychotics, Zyprexa (olanzapine) and Melperone, were also subject to trials. However, none showed benefits for psychosis symptoms. And Zyprexa was shown to induce harmful motor effects, making it a therapy to be avoided.

Dementia drugs, such as cholinesterase inhibitors, showed potential improvements in psychosis features, but additional studies are required to confirm those effects.

As of January 2018, the current position of the International Parkinson Disease and Movement Disorders Society on psychosis, which has not yet been updated to include the positive Nuplazid results, recommends Clozaril over Seroquel. Additional clinical trials are needed to clarify the benefits of other antipsychotic drugs to treat PDP.

The author, Joseph H. Friedman of the Department of Neurology, Warren Alpert Medical School, of Brown University, has received research funding from the National Institutes of Health and the Michael J. Fox Foundation.

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Source: Parkinson's News Today