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MJFF Offering Webinar Series for Scientists and Clinicians

webinar series

The Michael J. Fox Foundation (MJFF) is offering a new online Parkinson’s disease educational series aimed at researchers and clinicians.

Parkinson’s Disease Therapeutics Webinars, a free four-part series, starts June 16 and will feature presentations by leaders in Parkinson’s research and treatment development.

“We know people with Parkinson’s are counting on us to advance better treatments as quickly as possible,” Sohini Chowdhury, deputy CEO at MJFF , said in a press release. “Bringing the Parkinson’s research community together to share findings and ideas is a critical part of how we achieve that goal. This new webinar series reflects our unwavering commitment to drive research forward, even in the face of new challenges,” she said.

The series touches on some of the topics that normally would be discussed at the organization’s annual Parkinson’s Disease Therapeutics Conference, which will be not be held this fall due to the COVID-19 pandemic. The event typically draws around 300 research and business development professionals from academia and industry.

The first webinar session, June 16 from 11 a.m.–noon ET, is titled “Patient-focused Drug Development: Novel Instruments to Capture Patient Outcomes In Parkinson’s.” It will highlight MJFF-funded research aimed at identifying symptoms and other Parkinson’s topics that matter most to patients. It also will cover tools and methods used to elicit patient information, and how patient experience assessments could be developed for clinical trials.

Panelists will include Jesse M. Cedarbaum, MD, founder and head of Coeruleus Clinical Sciences; Lana Chahine, MD, assistant professor of neurology, University of Pittsburgh; and Ira Shoulson, MD, professor of neurology, University of Rochester.

In July (date to be determined) from 11 a.m.–noon ET, presenters will discuss “Molecular Signatures of Parkinson’s Disease.” The event will delve into the MJFF landmark study, the Parkinson’s Progression Markers Initiative (PPMI), which produced an extensive set of data to inform translational biomarker research as well as new therapeutic development.

The session topic for Sept. 15 from 11 a.m.–12:30 p.m. ET is “The Many Faces of Parkinson’s.” To foster discussion between patient and research communities, the session will discuss the importance of understanding how patients experience Parkinson’s. The virtual “patient day” will bring together caregivers, industry professionals, and patients to talk about subjects that  include disease onset, progression, symptoms and unmet patient needs.

On Oct. 8, from 11 a.m.–12:30 ET, academia and industry leaders will discuss “Where We Are & Where We Are Heading: A Look Ahead at Therapeutic Development in Parkinson’s,” with a focus on emerging trends as well as opportunities to advance treatment development.

Registration is open for the first session only. Registration for other webinar sessions will be available here soon.

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Podcasts Make It Easier to Stay Informed

podcasts

Living with Parkinson’s disease is a daily battle. It can be difficult to navigate the disease on your own, but the right resources can make staying informed a little easier.

Since many Parkinson’s patients experience tremors on a regular basis, audiobooks and podcasts may be helpful in lieu of books or newspapers. Most podcasts offer quick access to relevant topics and weekly updates about current news and events occurring across the globe. The following talk about the science behind Parkinson’s, but also share personal insights.

The Michael J. Fox Foundation Parkinson’s Podcast

The Michael J. Fox Foundation is known for the work that it does in Parkinson’s research and awareness. This is especially evident in the foundation’s podcast, where you can find interviews with scientists and doctors. There’s also plenty of information about living with Parkinson’s. Interviewees give tips about common ailments associated with the disease and ideas about how to navigate them. One episode features listener questions for doctors. Another discusses the role of inflammation in a Parkie’s day-to-day life. Overall, this podcast is incredibly informative and provides great insight.

When Life Gives You Parkinson’s

In “When Life Gives You Parkinson’s,” Larry Gifford shares his personal journey with the disease. He explores common questions about Parkinson’s, with recent episodes featuring ideas about finding a cure. He also interviews other people who are battling the disease, providing insight from an array of different people. This podcast offers tremendous insight and information about Parkinson’s and what it’s like to live with its challenges. The perspectives make it more personable than your standard news outlet and yet, it can be just as informative.

Trembling EMT: My Parkinson’s Journey

Trembling EMT: My Parkinson’s Journey” discusses the early onset of Parkinson’s and what the process looked like for Eric Aquino, an emergency medical technician who was diagnosed with the disease in 2018 at age 40. The podcast takes listeners through the diagnosis process, treatment, and clinical trials. Clinicians generally don’t have Parkinson’s when they treat the disease, so they may be unable to relate to patients. Listening to a podcast like “Trembling EMT” can provide insight into the journey of another person, who is both a patient and a medical professional.

Substantial Matters: Parkinson’s Podcast

In this podcast, the Parkinson’s Foundation not only provides information about the science behind the disease, it also discusses ways to live with it in a more peaceful away. For example, episodes such as “How Mindful Techniques Impact the Nervous System” talk about the benefits of practicing mindfulness. Focusing on the present moment makes it much easier to navigate mood disorders such as anxiety and depression. This podcast also offers a handful of episodes in Spanish, information about clinical studies, and deep brain stimulation.

Whether you are someone who is navigating the depths of Parkinson’s research or you’re interested in finding personal insights about the disease, podcasts offer a terrific way to access that information. While there is science on some podcasts, others involve casual discussions about the disease. It can help to hear other people’s experiences with the disease — and you don’t have to be a medical professional to host a podcast.

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Note: Parkinson’s News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Parkinson’s News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to Parkinson’s disease.

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Cure Parkinson’s Trust, Van Andel Institute Give $4.5M to Support Trials into New Treatments

Cure Parkinson's grant

Cure Parkinson’s Trust (CPT) and the Van Andel Institute (VAI) will contribute $4.5 million in total to support a global program that seeks to develop disease-modifying Parkinson’s therapies.

The three-year funding agreement backs the international Linked Clinical Trials (LCT) initiative, established by the two organizations in 2012 to identify treatments that might slow, stop, and reverse Parkinson’s disease (PD) largely by repurposing therapies approved to treat other conditions.

Each year, the LCT’s scientific committee identifies the most promising medicines to advance into clinical trials assessing their efficacy in PD. Choosing therapies that have already undergone safety and toxicology tests can potentially slash the time and funding it normally takes to test a new treatment and, if successful, get it to patients.

Right now, 15 clinical trials of committee-selected treatments are underway, and seven investigations have concluded, the release states. Ten additional studies are being planned. More than 2,500 people have taken part in trials to date.

“We are thrilled to continue our long-standing collaboration with the Cure Parkinson’s Trust on the international Linked Clinical Trials initiative and look forward to expanding our program to evaluate additional promising medications in the coming years,” said Patrik Brundin, chair of the program committee and director of the VAI Center for Neurodegenerative Science, in a press release.

“We are especially grateful to the trial participants, without whom this critical work would not be possible. I am immensely hopeful that, together, we will find a way to slow or stop Parkinson’s progression,” Brundin added.

Will Cook, CEO for Cure Parkinson’s, a U.K. group, lauded the funding agreement that builds upon the organization’s relationship with Michigan-based VAI.

“This will enable the launch of many more clinical trials of potentially disease-modifying, repurposed and novel drugs that have been identified through the diligent iLCT process, and thereby bringing us closer to our goal: a cure for the 10 million people living with Parkinson’s globally,” he said.

The LCT initiative has made progress. Most recently, results of a small single-center and open-label Phase 2 clinical trial (NCT02941822) for ambroxol (brand names are Mucosolvan, Mucobrox, and Mucol, among others) — long used in some countries to treat respiratory conditions — suggest the therapy is safe and well-tolerated in Parkinson’s patients.

The study also showed the compound’s ability to cross the blood brain barrier and raise levels of the protein glucocerebrosidase (GCase) in brain cells of those with Parkinson’s. Such activity could keep cells healthier longer to slow PD progression. GCase allows cells to more effectively remove waste, an ability thought to be deficient in some patients.

Mutations in the GBA gene — which encodes for the GCase protein  are one of the most common genetic risk factors for Parkinson’s

Results of the study, led by the University College London, were published last month in the Journal of the American Medical Association. To help ambroxol reach Phase 3 — needed to determine an optimal dose — the VAI and CPT, along with the John Black Charitable Foundation, will contribute a total of $679,000.

“The massive clinical undertaking involving so many drugs repurposed from other therapeutic areas is unique not only in neurology, but is larger than any drug repositioning program, whether academic or commercial, in any other disease,” said Richard Wyse, MD, CPT director of research and development.

“The partner between VAI and CPT bears testament to the principle of collaboration, and we look forward to continuing and growing this partnership in the years ahead.”

The Cure Parkinson’s Trust funds pioneering research globally aimed at finding treatments that can slow, stop, or reverse PD. The Van Andel Institute seeks to improve health and lives through education and cutting-edge biomedical research.

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New Large-Scale Data Portal Will Promote Parkinson’s Treatment Development

data portal

The Accelerating Medicines Partnership (AMP) for Parkinson’s (PD) has opened a data portal with de-identified information from 4,298 Parkinson’s patients and healthy control subjects for use by scientists seeking new treatments for the progressive neurodegenerative disease.

With unprecedented access to a data pool of this scale, investigators now can examine intricate data sets and conduct full-scale genomic analyses.

“AMP PD is a true example of the whole being greater than the sum of its parts,” said Walter Koroshetz, MD, director of the National Institute of Neurological Disorders and Stroke (NINDS), in a press release. “The combination of many data sets could allow researchers greater power to analyze potential biomarkers for Parkinson’s disease. This effort follows other AMP programs which have the shared goal of changing the way we go about the business of studying disease.”

Launched in 2014, the AMP is a public-private partnership between the National Institutes of Health (NIH), the U.S. Food and Drug Administration (FDA), multiple biopharmaceutical and life sciences companies, and non-profit organizations. Its goal is to transform the current model for developing new diagnostics and therapies by collaboratively identifying and validating promising biological treatment targets. The overarching mission is to develop new diagnostics and therapies relatively faster and at less cost.

Initial projects included Alzheimer’s disease, Type 2 diabetes, and rheumatoid arthritis, and lupus.

Last January, the AMP project on PD was launched. Managed by the Foundation of the National Institutes of Health (FNIH), the project includes the NIH, FDA, the Michael J. Fox Foundation (MJFF) for Parkinson’s Research, Celgene, Verily Life Sciences, Pfizer, Sanofi and GSK.

This project’s aim is to speed therapy development by providing the expertise and support necessary to learn which biomarkers demonstrate the most promise for predicting PD and disease progression. Biomarkers are molecular disease indicators.

“One important part of this platform is that, in addition to providing a place for storing complex data, we are also providing the tools to analyze that data within the platform itself,” said Debra Babcock, MD, PhD, NINDS program director and co-chair of the AMP PD steering committee. “In this way, we are bringing scientists to the data, which will increase opportunities for collaboration.”

Data in the officially named AMP PD Knowledge Portal was collected through the MJFF, NINDS and several other programs, studies and institutions. It includes information from samples of DNA, RNA, plasma, and cerebrospinal fluid, which is the liquid that surrounds the brain and spinal cord. The portal also offers a platform that can assimilate additional types and sources of data. For example, there is an upcoming study involving proteomics, the large-scale study of proteins.

With the longitudinal data in the portal, scientists can study patients’ information throughout the disease course. And, the data have been harmonized, allowing for comparison of information from different programs, and providing best practices for how to incorporate into the platform data from the PD community.

“The AMP model has provided a unique platform for bringing together diverse patient cohorts, advances in technology and scientific expertise to study Parkinson’s disease on a scale that has not been attempted before,” said David Wholley, senior vice president, research partnerships, FNIH. “With the AMP PD Knowledge Portal, we are helping the scientific community worldwide to fast-track discoveries that we hope will ultimately help Parkinson’s disease patients and their families.”

Scientists may visit this site to apply for access to the knowledge portal and interact with the data set.

Globally, roughly 7 to 10 million individuals have Parkinson’s, the second most common neurodegenerative disorder after Alzheimer’s disease.

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Middle-aged People Have Up to 20-Year Window to Reduce PD Risk, Oxford Health Policy Report Says

Oxford Health Policy Forum

In calling for a public health campaign to promote a brain-healthy lifestyle, an Oxford Health Policy Forum report says people in middle age have a 10- to 20-year window of opportunity to potentially reduce the risk of developing neurodegenerative diseases such as Parkinson’s (PD), or to delay progression.

“The process of neurodegeneration begins many years before symptoms appear, and it may take years for an at-risk individual to progress through the presymptomatic and prodromal disease phases until a clinical diagnosis can be made,” the report’s executive summary said.

Called “Time Matters: A Call to Prioritize Brain Health,” the report condenses published evidence and the consensus findings of a group of international multidisciplinary experts. It’s meant to encourage individuals to prioritize their own brain health, and to challenge policymakers, scientists, medical professionals, and organizations that fund research and programs to collaborate in planning for healthcare structures.

Focusing on Parkinson’s as well as Alzheimer’s disease (AD), the report summarizes key risk factors for both disorders, and discusses how lifestyle changes can improve brain health. It also explores challenges to the introduction of population screening-type programs — successful in some areas of medicine, including cancer — in neurodegenerative diseases, noting the potential for false positive test results that can cause undue anxiety.

To prepare for future scientific advances, the publication calls for continuing the search for effective diagnostic tools, biomarkers, therapeutic targets and treatments. In addition, it promotes “big data” as a way to help identify links between brain diseases and causative factors, which could advance drug target identification. The report also concludes that wearable technology could be increasingly useful in tracking disease courses and in personalized healthcare.

Because lifestyle changes have been shown to improve both cardiovascular and brain health, the report recommends wide public-health dissemination of the message, “What’s good for your heart is generally good for your brain.” And since healthcare professionals and administrators will continue to play key roles in disease management, they should make sure that individuals are referred to specialists and get follow-up care referrals that includes multidisciplinary services, holistic care, prevention information, and treatment options, the publication said.

The 47-page report also includes a host of research recommendations, including understanding that people’s awareness of their risks for neurodegenerative disease may motivate them to change behaviors. Researchers should also learn how best to support those changes, it said.

“We cannot change our genetic make-up, but we can help reduce the risk of developing neurodegenerative diseases ourselves by taking exercise, keeping socially active, eating healthily, reducing alcohol intake, stopping smoking and keeping our brains active,” Alastair Noyce, co-chair of the report’s author group, and a professor at Queen Mary University of London, said in a press release.

As people live longer, neurodegenerative diseases such as Parkinson’s are becoming more common — and presenting a growing socioeconomic burden. But such diseases are not an inevitable consequence of normal aging, said Gavin Giovannoni, author group chair and also a professor at Queen Mary.

“Planning for the healthcare structures of the future has to start now if we’re to avoid a crisis,” he said.

The report’s 10 primary writers are from the U.K., the U.S., the Netherlands, Germany, Australia, Belgium, Switzerland, and Luxembourg. It was funded through educational grants from biotechnology company Biogen and multinational healthcare company F. Hoffmann-La Roche.

The Oxford Health Policy Forum works to develop and support initiatives aimed at improving global public health, particularly in areas of unmet medical needs.

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Fox Foundation Awards $5M to Support Genetic Studies of Parkinson’s in Africa, Asia and India

Fox Foundation grant

With the overarching goal of helping scientists develop and test targeted therapies in Parkinson’s (PD), The Michael J. Fox Foundation (MJFF) is awarding $5 million in grants to three teams conducting genetic studies in African, East Asian and Indian populations.

The funding seeks to broaden these studies in order to better understand the role of genetics in PD onset and progression, and to expand treatment options for patients globally. Historically, the majority of research has focused on people of European descent. The grants will enable genetic testing of samples from more than 30,000 people.

“While the field has made significant strides in genetic research, we know we have more to learn about the changes in DNA that lead to Parkinson’s disease and impact its progression,” Brian Fiske, PhD, MJFF senior vice president of research programs, said a news release. “This is an all-star initiative with world-class geneticists, clinic networks and study volunteers coming together to paint a global picture of Parkinson’s and work toward cures for everyone.”

Since researchers discovered the first genetic mutation linked to PD in 1997, more than 80 others have been identified. Scientists are studying the cellular impact of these mutations, associated with about 15 percent of PD cases, in order to better understand Parkinson’s and possible ways of treating it.

Potential therapies aimed at proteins including LRRK2, one of the most commonly known genetic causes of Parkinson’s, are in clinical trials. Work like this is what the global Parkinson’s genetics program hopes to build upon. The non-profit foundation has long backed genetic studies, and diversity and inclusivity in clinical investigations.

Grants under this global program — with support from the Edmond J. Safra Foundation, a long-time partner of the Fox Foundation — will go to the following projects:

“Parkinson’s is a global issue, and we are grateful to The Michael J. Fox Foundation for fostering representation in research,” said Njideka Okubadejo, a professor of research at the University of Lagos in Nigeria. “We hope this partnership results in greater understanding of disease causes and contributors, and leads to new treatments for people living in Africa and beyond.”

Parkinson’s is the second most common age-related neurodegenerative disorder (after Alzheimer’s), and estimated to affect 7 to 10 million people worldwide.

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Parkinson’s Forum Offers Patients and Caregivers Place to Learn, Share, and Foster Community

patient-caregiver forums

Online forums have markedly altered how patients, caregivers, and healthcare professionals communicate and connect. Even when miles apart, individuals can establish supportive relationships, share experiences and information, and sometimes simply vent.

BioNews Services, a leading online health, science and research publication company, has been rolling out its own forums, including one for Parkinson’s disease (PD), a progressive neurodegenerative disorder that affects roughly 1 million U.S. residents, and more than 10 million people worldwide. Moderated by patients and caregivers — nearly all of them BioNews columnists — these forums complement the company’s news and information websites, such as Parkinson’s News Today.

It’s that synergy of science and personal experience that sets BioNews’ forums apart.

“Patient forums are certainly not a new concept, but BioNews has something unique to offer our communities,” said Chris Comish, BioNews’ founder and CEO. “No other company has the ability to deliver such relevant content to our readers and use that as a starting point for driving conversation and discourse. We’ve had some really touching conversations occur, and have seen patients, particularly those newly diagnosed, find sources of hope and inspiration. It’s touched everyone involved.”

The company has introduced nine forums since last January — Parkinson’s was launched last July —  with more launching by year’s end. Its plan is to have a forum, customized by moderators, for each of its 60-plus rare disease sites. Every forum requires registration and moderator approval, and offers features such as private messaging and keyword search.

BioNews is working to add multimedia to each forum, including podcasts, YouTube videos, and flash briefings.

Within each forum are categories, also known as subforums. In A Forum for Parkinson’s Disease Caregivers, for example, members can connect with other caregivers and learn news ways to overcome challenges and practice self-care, like those presented here. Other posts examine Parkinson’s caregiving and income loss, and how to speak to a loved one with this disease.

In the subforum Diagnosis Information and General Questions, people newly diagnosed along with their caregivers and friends can ask questions about the disease and find information, all while supporting each other. Discussion topics range from personal reactions to a diagnosis to reasons for a misdiagnosis, like those detailed in this posted article.

The Living with Parkinson’s Disease subforum is a place for those who understand the day-to-day challenges the disease poses, including difficulties with walking and speaking. It’s also a resource for information about living with a chronic illness. There are posts about disease progression, for instance, and books by those with Parkinson’s about their journey.

Members can use the Parkinson’s Disease Symptoms space for resources to help them understand and cope with how Parkinson’s uniquely affects them. Because symptoms vary from person to person, the subforum is particularly popular. Subjects include trouble rolling over in bed, difficulty swallowing waterimproving handwriting, and the effects of dyskinesia — those uncontrolled and involuntary muscle movements.

In Parkinson’s Disease Alternative Treatments, participants can ask questions and share information about alternative or experimental therapies they’ve tried or are curious about, with the proviso that many suggestions are not science based, and that effects can vary. There are posts about medical cannabis, for example, gluten-free diets and rosemary essential oil.

The subforum Parkinson’s Disease Medications is for sharing information and experiences related to therapies, including levodopa and Xadago (safinamide). The platform Parkinson’s Research News keeps members apprised of the latest study and treatment advances. Members can connect with researchers, healthcare professionals, and other patients. Posts range from a study about sex and Parkinson’s to the preclinical results on a molecule that might reduce toxic protein buildups in the brain and reverse motor symptoms.

In Parkinson’s Disease and Exercise, participants can learn about, and share the benefits and challenges of, exercising. Entries touch on specific forms of exercise like swimming, or being overwhelmed by the volume of exercise required. Members can use the Parkinson’s Disease Awareness and Advocacy subforum to learn how to educate others about Parkinson’s, and to discover current and future efforts to heighten disease awareness.

In all, Jean Mellano, who is the Parkinson’s forum co-moderator along with Ally MacGregor, said she and others have found that levity is often most effective in disease management.

“Laughter is the best medicine,” said Mellano, who was diagnosed in 2015. “Having a sense of humor about the absurdity of some PD symptoms can help with the healing process. If we can share our stories with others, it may lessen the embarrassment caused by our symptoms.”

To help generate conversation, forum moderators regularly post topics within subforums. Sometimes the topic is based on a new column or news article. Other times, it’s something about day-to-day life. Moderators also post about their own lives, for instance, sharing thoughts on movies they’ve seen or their vacation photos. Some forums also have groups, both public and private subforum offshoots.

The forums’ framework was mostly developed by Kevin Schaefer with help from the social media team at BioNews. Schaefer is the company’s community development manager and an SMA forum moderator. He’s excited about the forums, and their growth and future potential.

“It’s just really cool to see a community evolving in each of them,” said Schaefer, who has SMA type 2. “They are as much about fostering community as they are about providing information. We want to do everything we can to engage with our members.”

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Some Thoughts About Treating Parkinson’s Disease

treated, neuroprotective medications

Sherri Journeying Through

Someone told you that you or someone you love has Parkinson’s disease (PD). You’ve also heard that it is incurable. Nevertheless, can it be treated? If so, what medicines are used?

First, let me say that I was diagnosed with PD over 10 years ago and misdiagnosed with lupus over 20 years ago. As stated earlier, Parkinson’s disease is not curable, but it is treatable, to a degree. Just maybe, the day you’ve reached your “last degree” will be the day they announce a cure.

No one I have ever met likes taking pills, and yet to treat Parkinson’s effectively, there is no way around it for the common patient. Patients must also understand that Parkinson’s disease affects each person differently, so each patient is treated differently and different medications will be used accordingly.

My drug therapy has been conservative, according to my neurologist. For example, one medication at a time is added at the time of my checkup, if needed. This is done so that the physician is able to correctly identify which medication a patient reacts to should side effects occur. This can be a much safer procedure than starting with eight pills, three times a day, and working backward.

Pharmaceutical companies would go out of business if they were not constantly coming up with improvements to the treatments already available on the market. That, in and of itself, says the medical field is making progress in creating treatments for PD and other diseases.

While I said earlier that PD is incurable, it is treatable. Treatable, however, will look different for you than it does for me or another patient. Some will be behind you in their progression of the disease, some ahead. It also depends on how each individual doctor believes or thinks the disease should be best treated. As you can see, many different factors come into play when a physician must come up with a custom treatment that best suits a patient.

Of the medications available that physicians choose for their patients, some of the more tolerated and beneficial seem to be Mirapex (although it is noted to have serious side effects for some), Sinemet, Artane, Requip, and Comtan. Doctors might add other various medications be added to the mix depending on a patient’s symptoms and needs. These could include Azilect, Lexapro or another antidepressant (as one of the first notable symptoms of PD is depression), and Symmetrel, etc.

Each patient is unique and different and, therefore, patients’ needs and reactions to their treatment will be different. What works for one may not be tolerated or work well for another. Hopefully, the drug treatment is scaled to your individual needs and will treat your symptoms, but only your doctor can decide with you what is best and what is needed. New steps are taken every day, and progress is made at nearly the same rate worked toward a cure. Until then, it is best for patients to follow their regimented treatments until something better comes along. It will if we all keep fighting and do not give up.

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Note: Parkinson’s News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Parkinson’s News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to Parkinson’s disease.

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Source: Parkinson's News Today