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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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Parkinson’s Foundation to Present Spanish-language Conference Oct. 19

Parkinson's Foundation conference

The Parkinson’s Foundation’s fourth annual Spanish-language conference, set for Oct. 19 in Norwalk, California, will provide the latest information about Parkinson’s disease treatment and management.

Called “Hacia Adelante: Navegando el Mar del Parkinson’s” (“Forward: Sailing the Parkinson’s Sea”), the free conference is for patients, families, and healthcare providers interested in learning how to live well with Parkinson’s. All sessions and activities will be conducted in Spanish.

“Parkinson’s is more prevalent in Hispanics than in any other U.S. ethnic group, but studies confirm that many Hispanics are underserved when it comes to accessing necessary Parkinson’s information, treatment and care,” Fernando Cubillos, MD, the foundation’s senior director of research programs, said in a press release.

“As part of our mission to tackle this problem head on, we’re providing this conference to better empower and serve Latinos living with the disease through expert care, education and advocacy that is patient and community centered.”

In addition to presentations by a host of expert physicians and advocates, the event will include question-and-answer sessions, community resources, exercise and dance demonstrations, live music performances, and complimentary meals and parking. Grammy and Latin Grammy award-winning music producer Sebastian Krys will talk about his experience with Parkinson’s. The conference will take place from 9 a.m. to 3 p.m. at the DoubleTree by Hilton, 13111 Sycamore Drive.

Conference topics were chosen by the community. They include symptom management, healthcare system navigation, exercise, remaining motivated in the face of Parkinson’s, and caregiving as a family. Register here or by calling the bilingual Parkinson’s Foundation helpline at 800-473-4636.

On a related topic, the foundation presents a new episode of the podcast, “Substantial Matters: Life and Science of Parkinson’s,” every other Tuesday. In one episode — “What We’ve Learned from the Hispanic Parkinson’s Community” — Claudia Martinez, the Hispanic outreach coordinator at the Muhammad Ali Parkinson Center in Phoenix, describes the methods she uses to help Hispanic patients get the best possible care.

The most common neurodegenerative disease after Alzheimer’s, Parkinson’s affects nearly 1 million U.S. residents and 10 million globally. In the United States alone, 60,000 new cases are diagnosed annually.

The Parkinson’s Foundation works to enhance patient care and advance research toward a cure.

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MJFF Announces $10M Challenge to Develop Critical Research Tool for Parkinson’s

MJFF challenge

With the aim of opening entirely new avenues in Parkinson’s disease research and care, The Michael J. Fox Foundation (MJFF) has announced a $10 million contest to drive development of an imaging tracer that would be used to see alpha-synuclein protein in the living brain.

Called the “Ken Griffin Alpha-synuclein Imaging Competition,” the project will award $8.5 million to up to three investigative teams. After two years, the team that makes the most progress will receive an additional $1.5 million to continue. The application deadline is Jan. 17, 2020.

Development of such a critical and, so far, elusive research tool would be a game changer for Parkinson’s. Of the roughly 10 million patients globally, nearly all have accumulations of the protein in their brains. Investigators believe these alpha-synuclein masses negatively affect cells and cause disease symptoms. The problem is the clumps are visible only after patients die, through post-mortem studies.

The competition to produce technology for the living brain is largely funded by a $7.5 million gift from Ken Griffin, founder and CEO of the investment company Citadel.

“Providing researchers and clinicians with the ability to detect and monitor disease would be revolutionary for the field and, most importantly, for patients,” said Todd Sherer, PhD, MJFF CEO, in a press release. “Ken Griffin’s gift invigorates research toward this important tool, which will make a meaningful impact in the lives of everyone touched by Parkinson’s.”

The MJFF has been at the fore of efforts to develop a positron-emission tomography (PET) tracer. It has sponsored independent research and organized a consortium around it. Three years ago, the MJFF announced it would award $2 million to the first team to reveal clinical proof of a tracer and share it with researchers at large. That challenge continues.

Meanwhile, at the organization’s 2019 PD Therapeutics Conference on Oct. 15, biotechnology company AC Immune will present  findings from its MJFF-supported tracer study.

The Ken Griffin award announcement is expected by April. The MJFF is encouraging applications from multidisciplinary teams, and is particularly interested in collaborations between academic and industry groups that have access to diverse compound libraries.

“The Michael J. Fox Foundation has led the charge in advancing ground-breaking research in this field over the past 20 years,” Griffin said. “I hope this partnership with the Foundation will bring us closer to a cure for the millions of people living with Parkinson’s disease.”

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Inbrija Can Help to Improve Work Productivity and Keep Dyskinesia at Bay, Acorda Reports

study data presentations

Use of Inbrija (levodopa inhalation powder) and like medications help to more effectively manage of off episodes in Parkinson’s disease and improve work productivity in patients using it, according to a study being presented by Acorda Therapeutics at the International Congress of Parkinson’s Disease and Movement Disorders.

Another study presentation at the congress, now underway in France, will show that Inbrija treatment does not lead to a worsening of dyskinesia, or involuntary muscle movement.

Dopaminergic medications, like levodopa, help to control Parkinson’s motor symptoms. But as disease progresses, patients typically need to gradually increase their dose to maintain the same level of benefit. And even with such increases, they sometimes experience a reappearance or worsening of symptoms (off periods) due to the diminishing effects of dopaminergic therapy.

In the study, “Impact of OFF periods on aspects of employment for people with Parkinson’s disease,” presented as a scientific poster, researchers characterized the burden of off periods on work absence and productivity.

They used data from the “Financial and Social Impact of Parkinson’s Disease Survey” produced by the Michael J. Fox Foundation (MJFF) and the Parkinson’s Foundation, conducted between Sept. 17 and Oct. 8, 2018.

The online survey was directed at people with Parkinson’s, and completed by the patients, their care partners, family members or close friends. It compared the burden — in terms of work productivity — of off periods in people reporting to experience them in the past 12 months to those reporting no experience of off periods while on dopaminergic therapy.

A total 1,602 surveys were returned, 70% completed by Parkinson’s patients, and 20% by caregivers, family members, or close friend. Off periods were reported by 881 (55%) survey respondents, and an absence of off-period symptoms by 434 (27%) . Around 18% (287 people) did not know if they had experienced an off period over the previous year or failed to respond to the question.

Of the 881 patients reporting off periods, 176 (20%) worked full or part-time. Among those without such reports,  in 90 (21%) worked full or part-time. Those with off periods were more likely to report reduced work productivity, in comparison to the other patient group (72% vs. 43%).

Almost half (48%) of patients with off periods reported at least 10 days each month of low productivity, compared to the 29% of those without off period. Importantly, 34% of them missed, on average, at least three working days each month because of their disease, compared to the 21% of patients without off periods.

“PD [Parkinson’s disease] can have a financial burden on patients and their families,” the researchers noted. “More effective management of OFF periods and other PD symptoms may alleviate this burden on people with PD.”

In another scientific poster, titled “Dyskinesia Rates in Patients with Parkinson’s Disease on CVT-301 (levodopa inhalation powder),” the company summarized the results of their analysis on the effects of Inbrija (CVT-301) on Parkinson’s dyskinesia  (involuntary muscle movements).

Inbrija, developed and marketed by Acorda, is an inhaled formulation of levodopa approved by the U.S. Food and Drug Administration (FDA) to treat symptoms of Parkinson’s disease during off episodes. When inhaled, this dry powder formulation of levodopa bypasses the digestive system and to deliver a higher and more consistent dose of levodopa to the brain.

In a 12-week, randomized and placebo-controlled Phase 3 study (known as SPAN-PD, NCT02240030) in 339 Parkinson’s patients on a carbidopa/levodopa regimen and experiencing off episodes, were treated with Inbrija or placebo. Results found that treatment at an 84 mg dose significantly eased motor symptoms as soon as 30 minutes after taking a dose.

More than half of patients (58%) given Inbrija also had control of their motor symptoms, meaning they went from an off period to an on state. They also maintained an on state when evaluated up to an hour after treatment administration, compared to 36% in the placebo group.

Researchers for this study analyzed the effects of Inbrija on patients’ dyskinesia. They obtained reports made by patients taking part in the trial, required to keep diaries of time with dyskinesia, reported as occurring over three consecutive days prior to each study visit.

Adverse events during the SPAN-PD study were also examined, as were trial investigator ratings of dyskinesia occurrence and 60 minutes post-dose, measured by the Unified Parkinson’s Disease Rating Scale (UPDRS) part IV (motor complications).

On average, patients took two doses of Inbrija (84 mg) per day during the trial.

Four (3.5%) patients on Inbrija complained of a dyskinesia-like event, in contrast to none in the placebo group. No one withdrew from the study due to dyskinesia.

At week 12, examiner-rated dyskinesia at one hour post-dose was of 16.7% among Inbrija-treated patients and 8% among people in the placebo group, all rated mild to moderate with the exception of one placebo patient whose dyskinesia was judged severe.

“In this phase 3 study of [Inbrija], adverse events and examiner ratings of mild to moderate dyskinesia were reported more frequently for [Inbrija] compared to placebo, but there was no increase in troublesome dyskinesia according to the patient reported diary and the overall impact on UPDRS part IV dyskinesia score was minimal,” the researchers concluded.

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Rhode Island Professor Receives More Funding for ‘Smart Glove’ for Parkinson’s Patients

smart glove grant

The National Science Foundation (NSF) has awarded a University of Rhode Island (URI) professor nearly $250,000 to help commercialize a “smart glove” for Parkinson’s disease patients.

Kunal Mankodiya, PhD, an associate professor of engineering, is developing the glove that can capture wearers’ movement data. Designed for those with PD or other movement disorders, the technology can help physicians customize patients’ exercise and treatment regimens.

The two-year project grant is through the NSF’s Partnerships for Innovation program, which helps researchers accelerate innovations that address significant societal needs. The project received NSF funding earlier.

“This funding will enable us to take a deep dive into the world of fusing different domains, including conductive fabrics, wearable electronics, human-factors design and smart textile manufacturing,” Mankodiya said in a press release. “I’m glad that the NSF created such grant programs where innovative technologies could find their way to the marketplace over the years.”

It’s been three years since Mankodiya, with the help of students in his Wearable Biosensing Lab, designed the first prototype of the glove. “We’ve performed significant research on the smart gloves over the years. We decided that it’s time to transition this technology from research to market. However, the transition is not straightforward. It will require very focused, narrow research to finalize the physical, digital and analytical components of the smart gloves,” he said.

Nick Constant has been there since the start. The URI electrical engineering doctoral student designed the proof-of-concept glove that earned the original NSF grant. Along with Mankodiya, he also wrote the new grant proposal. “Its ultimate outcome seemed clear from the beginning, but building a new technology takes time and testing,” he said. “We have seen this glove go from a hopeful idea to gaining traction in reality through different design iterations and consultations with stakeholders.”

Constant’s charge these days is to find project collaborators knowledgeable about areas such as manufacturing, supply chains and medical device regulations. Ultimately, the team wants an affordable glove that’s relatively easy to manufacture.

Neurologist Umer Akbar, MD, project collaborator and co-director of Rhode Island Hospital’s Movement Disorders Program, specializes in those living with Parkinson’s, and sees a definite need for the wearable device. “The challenge with studying the many symptoms of the disease is that they fluctuate throughout the day,” he said. “The short window physicians have into their patients’ lives is often inadequate to verify the symptoms, so we sought to develop wearable technology that can remotely and objectively provide clinical data which can help us better treat our patients.”

In a pilot study to take place in Mankodiya’s lab, at Rhode Island Hospital, and in patients’ homes, up to 30 Parkinson’s patients will try the glove.

Andrea Hopkins has worn the glove a few times since its development. Diagnosed with Parkinson’s in 2002, the former URI assistant vice president of public affairs eagerly awaits the finished version.

“There is no cure for Parkinson’s disease, but if doctors can monitor their patients remotely using the smart glove, it would enable them to assess how the medications are working,” she said.

Many stand to benefit from the glove’s successful development. The neurodegenerative disorder affects roughly 1 million U.S. residents, and more than 10 million individuals globally.

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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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What Not to Say to Someone with Parkinson’s Disease

words

Not all people with Parkinson’s disease experience the same symptoms. For example, I am most affected by bradykinesia, poor fine motor skills, incontinence, and fatigue.

I was inspired to write this column based on my personal experiences after I read Sherri Woodbridge’s column, “What to Say to Someone with Parkinson’s Disease.” Most people don’t know what to say and usually have good intentions. However, poorly chosen words can Be mindful of how you speak to someone with Parkinson’s.

  

 1. ‘You don’t look like you have Parkinson’s.’

This is my least favorite comment. Many of my symptoms are unseen. People have no idea how much I am struggling at times to maintain some semblance of normalcy. Most days, I feel shaky and weak, and I am totally exhausted.

A comment like this can minimize the hidden symptoms that are very real to the person with Parkinson’s. Most people do not understand what those of us with the disease deal with daily and sometimes hourly.

2. ‘You are lucky you don’t have tremors.’ Or, ‘Your symptoms could be worse.’

Parkinson’s is progressive and unpredictable. It’s impossible to know where my symptoms might be six months from now, let alone six years from now. Just because I don’t exhibit a particular symptom now does not mean I will never have it. At times, Parkinson’s feels like the sword of Damocles hanging over my head.

3. ‘You look like you are having a good day. Your Parkinson’s must be getting better.’

If I am having a good day with few symptoms, it doesn’t mean that my disease is getting better. There is no cure and no way to heal from Parkinson’s. For me, good days are fleeting and the exception to the rule. A comment like this serves only to remind me that Parkinson’s is progressive.

4. ‘I have the same problem.’

Sometimes, people respond with this statement when I comment about one of my symptoms (choose any of the following):

  • tripping
  • having to sit down when I put on my shoes
  • losing my balance all the time
  • forgetfulness
  • inability to multitask

I think well-meaning people say they have the same issues because they don’t want me to feel alone in experiencing these challenges. After all, they can develop over the natural course of aging. Most people do not understand, however, that I used to be very sharp mentally and was a strong athlete and dancer before I was diagnosed. That makes these symptoms much more glaring for me.

 5. ‘Hurry up!’ Or, ‘What is taking you so long?’ Or, ‘Late, again?’

With Parkinson’s, I have two speeds: slow and slower.

I clearly remember, years ago, watching my Parkinson’s-diagnosed friend putting on her coat or fastening her seat belt. I would think to myself, “Why is she so slow?” Now, I totally understand what she was dealing with.

6. ‘You have to use the bathroom again?’

My late husband always told me my life was ruled by my bladder. No truer words have been spoken, especially now that I have Parkinson’s. I never like to be too far from a bathroom. I found a smartphone app called Flush that displays public restrooms nearby, and I never leave home without it!

7. ‘Please fill out this form and print legibly.’

Doctor’s office staff, please take note of this one. I cringe whenever I see a new doctor and have to fill out reams of paperwork. My handwriting is atrocious; it was the first symptom that sent me to the neurologist. And guess what? I had to fill out a lot of paperwork at his office! Although my typing on a computer is no longer as fast as it used to be, at least I have a spell-checker. E-forms are a greatly appreciated and preferred option.

8. ‘Parkinson’s doesn’t kill you.’

It’s true that people do not die from Parkinson’s, but they typically die from complications of the disease. As an example, Parkinson’s can impair patients’ ability to swallow, putting them at risk for inhaling, or aspirating, food or liquid into their lungs, leading to aspiration pneumonia. Pneumonia is the leading cause of death in patients with this disease.

Still, I fear living with a poor quality of life and loss of my independence more than I fear dying.

In the grand scheme of things, comments made out of ignorance are no big deal considering what people with Parkinson’s deal with every day. Now that you know what not to say, read Sherri’s column on things you can say to someone with Parkinson’s.

Sometimes you don’t have to say anything. Silence speaks it all.”Disha Patani

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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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Harnessing the Power of Music

Listening to music

A proud, black piano stands in my parents’ living room. It’s the foundation of our home. From behind the sleek mahogany panels, fury, sadness, and happiness express themselves without judgment. My operatic brother sings his troubles away. My mom, a lifelong piano teacher, often alludes to the power of music because it isn’t just a creative outlet. It’s a mood-setter. It establishes rhythm and dance. Therapists use it to explore cognitive and emotional turmoil. And it also facilitates social change.

“Powerful songs have always been the engine behind the greatest social movements — it is the marching soundtrack that unites the people and gives them focus and resolve, and it’s not limited to the U.S.,” Barrett Martin writes in HuffPost. “In 1970s Nigeria, Fela Kuti invented Afro Beat music as a way to protest the oil company regime of Nigeria. His song ‘Zombie’ became a global hit that railed against Nigeria’s military dictators. In South Africa, the indigenous Mbatanga music helped bring about the end of apartheid and it spread a message of peace and reconciliation in that nation.”

If music is powerful enough to inspire entire chapters of history, what else is it capable of doing?

Parkinson’s disease and music

Music is powerful for a number of reasons; listening to it releases dopamine and serotonin – neurotransmitters that decline in Parkinson’s patients. But a study published in 2008 suggests that learning how to play an instrument also develops motor skills and reasoning abilities. Children who learned to play an instrument exhibited more advanced motor and reasoning skills than children who didn’t learn to play an instrument.

That same study states that, “Parallels between music and language have been used to support the hypothesis that music training may strengthen verbal skills.” Since music may help to develop speech patterns, exploring sound offers a tangible solution to verbal decline. Changes in speech occur with the progression of Parkinson’s. But active participation in music challenges the progression of Parkinson’s disease. Rather than observing consistent loss, Parkinson’s patients can explore music as a source of development.

Singing and Parkinson’s disease

If you’re feeling particularly enthusiastic about singing, consider joining a Parkinson’s singing group. In the same way that music changed history for entire communities, Parkinson’s singing groups offer a sense of camaraderie that’s powerful in itself. Producing endorphins in those who participate, singing is both cathartic and constructive. And it even boosts the immune system.

A small 2012 study in Norway found that group music therapy positively affected five of six Parkinson’s patients. While speech patterns didn’t noticeably improve, a decline in speech also didn’t occur during the study. This suggests that group singing may slow the progression of speech-related outcomes for Parkinson’s patients.

Singing encourages focus on breath support, diction, volume, and emotion. Vocal strength and articulation can challenge many Parkinson’s patients. But singing reinforces some of the functions that otherwise degrade.

Moving forward

Parkinson’s disease is degenerative and continuously heartbreaking in its thievery, but there are ways you can use music to fight its progression. Whether you’re interested in listening to records, picking up an instrument, or using your good ol’ vocal cords to bring happiness into your life, music offers incredible benefits to those who explore it.

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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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I’m Learning Not to Make Assumptions

assumptions Journeying through Parkinson's

Sherri Journeying Through

I have a bad habit of assuming things. You would think (an assumption) that I would have learned by now, but no. 

Take today for example. 

My husband and I were at the mall this afternoon people-watching in front of the coffee shop. I watched through the glass doors as a dad bent over and tied his approximately 11-year-old son’s shoe. Attached to this boy’s belt was a knife sheath, which held a knife with about a 6-inch blade (another assumption). 

I told my husband that you’d think if that boy was old enough to be in possession of a knife like that in public, he could tie his own shoes. Then the dad stood up and the boy turned to face me head-on, and that’s when I saw it: the broken arm. It’s hard to tie shoes with a broken arm. 

You’d think I’d have learned by now, but again — no.

However, I am getting better. I’ve been praying to be redeemed from my habit of assumption, but it’s tough. I have stopped drawing conclusions right away. I can hold onto thoughts that once ran rampant, and instead, I am trying to get the whole picture, or I turn away from the “picture” entirely.

Having Parkinson’s has helped me learn this lesson. 

We can walk funny. We can talk funny. We can move all sorts of different ways. We can stop in the middle of a sentence or stop in the middle of a walk and have to be jump-started by the help of another. We know what’s happening, but the strangers who watch us most likely haven’t a clue.

They may assume we’re a tad bit tipsy, forgetful, senile. Any number of things could account for our odd behavior. Because I act the way I do (tremors, dyskinesia, dystonia, masked face, etc.), I have come to see others differently. To look past the initial assumption and see the situation for what it really is: not a spoiled child, but one with a broken arm. 

Now I need to figure out why he’s got a 6-inch knife in a leather sheath hooked to his belt. I don’t want to even think where my assumptions could take me with that one.

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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.

The post I’m Learning Not to Make Assumptions appeared first on Parkinson’s News Today.

Is Parkinson’s Disease a Bully?

bully

Sherri Journeying Through

We have all heard of them, and many of us, in one way or another, have encountered them. Some of us (hopefully, with regret) have been one. Who am I talking about? 

Bullies

They intimidate us and physically hurt us. They embarrass us, taunting us with their words. We fear that they’ll defeat us.

What do bullies have to do with Parkinson’s disease?

Parkinson’s is a bully with a capital “B.” It teases and taunts us, telling us that we are no longer useful. It tries to convince us that we no longer serve any purpose. This disease can tempt us to give up, to surrender to its cruel clutches. 

Embarrassment is one way Parkinson’s tries to steal our dignity and pride. And it often wins. We forget as we struggle through each day that others don’t understand us: our movements, speech, and forgetfulness. We can take those misunderstandings personally.

Drooling, shaking, a quiet voice, and a masked face are symptoms that may have become “natural” to those of us with the disease. But no matter how “natural” these have become, we’re still embarrassed by them because of others’ reactions when we’re out in public.

Parkinson’s whispers its ugly lies, saying you are no longer of value

If anything, you have more value. You have developed an empathy that many others don’t possess. You can relate better to those who are battling other diseases, those who are in pain, feel alone, and need hope. People who are fearful receive your undivided attention. Of course, having this disease may not be your preferred method of acquiring such character traits.

In a recent documentary video on Facebook, television host and producer Mike Rowe said, “To feel bullied is to feel helpless.” While Parkinson’s disease is a bully with a capital “B,” we don’t need to feel helpless. Instead, we should feel hopeful. Why? We are becoming better and strong enough so we don’t allow Parkinson’s taunting to get the best of us. And for me, that’s a huge plus.

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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.

The post Is Parkinson’s Disease a Bully? appeared first on Parkinson’s News Today.