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Parkinson’s Foundation Launches International Cycling Event to Promote Exercise, Raise Funds

cycling event, fundraising

The Parkinson’s Foundation is launching a new initiative called Parkinson’s Revolution, a global cycling event designed to highlight the benefits of exercise in Parkinson’s disease while also raising funds for research.

A new signature event for the foundation, Parkinson’s Revolution is an indoor cycling program taking place Feb. 8 at studios in seven U.S. cities — Boston, Chicago, Dallas, Miami, New York City, San Francisco, and Washington, D.C. The program will also involve select locations in Canada and the United Kingdom. The fundraising goal for each site is $10,000.

“Parkinson’s Revolution is a great example of how the international [Parkinson’s] community is rallying together to combine the benefits of exercise and critical fundraising for research in one event,” John Lehr, the foundation’s president and CEO, said in a press release. “We are honored to work alongside Parkinson Canada and Parkinson’s UK to further our mission to make life better for people with Parkinson’s.”

In a high-energy environment including motivational music and instruction, participants of all abilities will select either a 90- or 45-minute ride as individuals or as part of a team. Supporters who can’t make it in person may saddle up at home or a local studio and raise funds as “virtual riders.” The foundation is asking each person to commit to fundraising a minimum of $250.

Money raised will go directly toward research, resources, and patient care. In addition to offering an opportunity to meet fellow supporters, each Parkinson’s Revolution event will include information about the Parkinson’s Foundation.

Click on a city or “virtual ride” at this site to register. After signing up, participants will be sent tools needed to reach — or exceed — fitness and fundraising goals.

Exercise is particularly important for Parkinson’s patients, helping them maintain balance, mobility, and the ability to do daily tasks. Scientists have found that those who exercise at least 2.5 hours weekly also experience a slower decline in their quality of life.

In addition, researchers have studied the brains of mice that exercised under conditions similar to a human being on a treadmill. While exercise did not increase the number of neurons or amount of dopamine in mice’s brains, it did prompt their brains to use dopamine more efficiently.

Dopamine is a neurotransmitter that helps regulate movement and emotional response. A lack of it is associated with neurodegenerative disorders including Parkinson’s, which affects nearly 1 million U.S. residents and 10 million individuals globally.

Watch this Parkinson’s Revolution video from the Parkinson’s Foundation:

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U.S. Defense Department Funds Research Into Parkinson’s and Exercise

The U.S. Defense Department has awarded researchers from Northeast Ohio Medical University (NOMU) and Michigan State University (MSU) about $1 million each to study the effect of exercise at different stages of Parkinson’s disease.

The three-year grant went to longtime collaborators Sheila Fleming, PhD, an assistant professor of pharmaceutical sciences at NOMU and Caryl Sortwell, PhD, a translational neuroscience professor at MSU.

“It’s a major award for both of us,” Fleming said in a news release. “We had been working together for many years because our interest and work are very complementary. Ultimately, it’s about a $2-million grant. She gets half and I get half.”

Fleming, who was awarded $954,566 by the U.S. Army Medical Research Acquisition Activity, said she will work on behavioral aspects of the study while Sortwell will handle pathological events.

The project, titled “Exercise Effects on Synuclein Aggregation, Neuroinflammation and Neurodegeneration,” will analyze the impact of exercise in an optimized preclinical disease model. That will include examining mechanisms associated with the central characterization of Parkinson’s — the buildup of toxic alpha-synuclein aggregates, neuroinflammation, and expression of certain molecules in the brain called trophic factors.

Using a progressive Parkinson’s disease animal model, Sortwell is charting the course and development over time of pathological events in the brain. Fleming is examining how the pathological occurrences relate to changes in motor and non-motor symptoms. Together, the researchers are examining the impact of introducing exercise at different stages of Parkinson’s progression.

Most scientists studying exercise in Parkinson’s have used what are called toxin models, which solely target the dopamine system, Fleming said. The chemical dopamine acts as a neurotransmitter and is essential in sending messages from the brain to direct muscle movement and coordination. As more dopamine-producing neurons die, dopamine levels slowly and progressively decrease until patients are unable to control normal movements.

But those models have issues related to reproducibility and a lack of understanding of the biological properties of alpha-synuclein pathology. Fleming and Sortwell are using a newer model supported by the Michael J. Fox Foundation called PFF — for pre-formed synthetic fibrils — to elucidate mechanisms of alpha-synuclein-induced pathology. In this model, fibrils are injected into animals, and researchers track the appearance of symptoms.

Studies have already shown the likelihood that alpha-synuclein clumping begins in the back of the brain and proceeds to the front, a pathology that may be related to non-motor Parkinson’s symptoms such as depression, anxiety, reduced sense of smell, and cognitive impairment.

Fleming and Sortwell will look at the effect of exercise on both non-motor and motor symptoms (such as problems walking) to determine what symptoms manifest and in what order. This information could lead to earlier diagnoses, and provide a non-pharmacological, low-cost therapeutic strategy for patients, including veterans.

Currently, Fleming said, by the time individuals first seek help for symptoms, they have typically already lost at least half their dopamine neurons.

“Slowing the progression of the disease could have a huge benefit, especially since patients aren’t usually diagnosed until between 50 and 60 years of age,” she said. “So, if you could slow it, that could have a potentially huge impact on the quality of life of patients.”

The scientists presented their project in October at the annual meeting of the Society for Neuroscience.

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Power and Strength Training Improve Muscle Performance, But Offer Little Functional Benefit in Parkinson’s, Study Says

physical training, Parkinson's

Both power and strength training can improve muscle performance in people with Parkinson’s disease, but these improvements may not translate to functional movement, a new study has found.

The study, titled “Power vs strength training to improve muscular strength, power, balance and functional movement in individuals diagnosed with Parkinson’s disease,” was published in Experimental Gerontology.

Strength and power training are forms of progressive resistance training (PRT) — what’s normally called “lifting weights,” although the process often involves more complex machinery than barbells —  where a muscle is worked against some form of resistance (e.g. lifting something heavy, in which case the resistance is gravity).

The difference between the two is that strength training focuses on increasing the total resistance that a muscle can move (lifting heavier weights), whereas power training is more concerned with doing lower-resistance reps at faster speeds.

In the study, researchers wanted to find out if PRT improves muscle strength in people with Parkinson’s disease and their ability to function independently. They conducted a clinical trial (NCT03434327) with 35 people with mild-moderate Parkinson’s disease (23 male, 12 female, average age was 71 years), who were randomly assigned to complete a 12-week course of either strength training or power training, consisting of two hour-long sessions per week.

The researchers then assessed the participants’ muscle strength (maximum weight they could move) and power (fastest speed they could move a not-maximum weight), as well as other assessments such as their balance and quality of life.

Patients in both groups showed a significant improvement after the 12-week intervention in their ability to perform chest and leg presses. However, there was no significant difference between the two groups.

The same pattern was observed for muscle power: Participants experienced significant improvement in both chest and leg presses, but there was no difference between the two groups.

Over time, both groups demonstrated a decrease in balance scores (measured via the Berg Balance Assessment) that, while statistically significant, was not considered clinically significant. In other words, the improvement in balance wasn’t due to chance, but it probably didn’t have much impact on the participants’ day-to-day lives.

Other functional measurements, including fear of falling (measured by the Modified Falls Efficacy Scale) and functional mobility (assessed via time-up-and-go test) did not differ between the groups over the course of the study.

Similarly, results from the Parkinson’s Disease Questionnaire-39, an assessment of quality of life for people with Parkinson’s, suggested no differences over time or between the groups in terms of ability to perform tasks required for daily living.

The fact that increased muscle performance didn’t translate into better functionality wasn’t entirely unexpected, the researchers said, noting that past studies have yielded conflicting results in the elderly, and in Parkinson’s patients.

“Given that subjects in both the [power training] and [strength training] groups demonstrated significant improvements in muscular strength and power, both PRT programs appear helpful in addressing these neuromuscular performance variables,” the researchers said.

“Since we did not observe any functional benefit in our sample, the inclusion of movement-specific training components that target balance, mobility and [activities of daily living] performance appears warranted in any PRT program,” they added.

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High Intensity Interval Training May Benefit Patients with Parkinson’s, Pilot Study Shows

HIIT and Parkinson's

High intensity interval training for 12 weeks can significantly improve neuronal activity and delay progression of Parkinson’s disease, correlating with an improvement in patients’ quality of life, according to a recent study.

The scientific poster, “High intensity interval training elevates circulating BDNF and miRNAs level in patients with idiopathic Parkinson’s disease,” was presented recently at the International Congress of Parkinson’s Disease and Movement Disorders in Nice, France.

Different types of exercise — such as aerobic, resistance, forced exercise, dance and balance training — have been shown to improve motor symptoms in Parkinson’s disease.

However, to date, there is limited information about how exercise can induce beneficial effects, in particular regarding cognitive and motor functioning.

A team of Polish researchers conducted a small study to evaluate the impact of high-intensity interval training (HIIT) in people with Parkinson’s disease.

The study enrolled 32 idiopathic (of unknown cause) Parkinson’s patients, 16 of whom underwent 12 weeks of HIIT workout, and 16 age-matched participants used as controls. Patients were examined and had blood samples collected before and after the completion of HIIT workout (after 12 weeks) and one week after training completion.

Researchers evaluated the levels of brain-derived neurotrophic factor (BDNF), an important signaling molecule known to contribute for the normal activity of dopaminergic neurons — those most affected by Parkinson’s disease — and prevent their degeneration.

Recent studies have suggested that moderate intensity training can increase  the blood levels of BDNF in Parkinson’s patients while simultaneously decreasing physical impairment. Still, studies in sedentary subjects and athletes show better effectiveness of HIIT training as compared to aerobic training of moderate intensity.

The results showed that 12 weeks of HIIT resulted in higher BDNF levels and stimulated the production of small RNA molecules known to regulate BDNF.

Patients who underwent the HIIT workout plan also showed decreased Hoehn and Yahr scale scores, which indicate slower disease progression, neuroplasticity and, consequently, quality of life.

“This is a very interesting study that shows what is happening at a physiological level when patients with Parkinson’s disease exercise,” Deborah Hall, MD, PhD, director of the movement disorders program at Rush University Medical Center in Chicago, Illinois, said in a press release.

“Although neurologists are frequently asking their patients with [Parkinson’s] to exercise, not all patients are able or willing to do so, especially at levels used in many of the aerobic studies. By understanding what happens on a cellular or chemical level in these Parkinson’s disease exercisers who improve clinically, we may be able to provide an intervention or therapeutic that can lead to the same benefits as exercise without the work of exercising,” Hall said.

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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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Empower Yourself by Making Good Choices

exergaming

Medication is more than the regimen of pills we take every day. Exercise, diet, and music are lifestyle choices that are beneficial to people with Parkinson’s disease (PD). We did not choose to have Parkinson’s, but we do have a choice about how we live with and respond to PD.

Making good choices and living well with Parkinson’s is empowering. You are in charge. There can be a day when the couch and ice cream for breakfast are the specials of the day — they just can’t be specials for the entire week.

One frequently asked question is, “What is the best type of exercise?” While research regularly highlights different benefits of different types of exercise, the answer is simple: The best type of exercise for you is one that you love to do and look forward to every day. Try different things. I do a variety of exercises, from coaching Rock Steady Boxing classes to attending ballroom dance lessons with my husband.

Exercising with people who also have PD is an added bonus. Shared diagnoses facilitate camaraderie that becomes an extended family. You show up for class because your brothers and sisters are waiting for you. Everyone may be at different stages in their Parkinson’s journey, but we all share the same hope.

Exercising together provides a support group that meets two or three days a week, rather than once a month. It may be the only support for someone who otherwise may be alone. By doing things together, the unexpected and uncertain Parkinson’s detour can be a little less frightening.

So, where does music factor into the detour? Music can take you in so many different directions, like playing an instrument, singing like a rock star in your car, or dancing. There is evidence that drumming is beneficial, and you don’t even need an instrument — turn your garbage can over and you are ready to go!

Music encourages movement and is fun, especially when dancing. We all know that when we hear the song “YMCA,” all hands are in the air. Dancing is something you can do with someone who is on the Parkinson’s journey beside you or even by yourself. Dance through your house while doing the daily housework like no one is watching!

Little victories happen each day. If you can’t find one, create one by choosing a little extra medicine that has a good beat, makes you sweat, or gives you vitamins. So, go ahead and put on some good music, exercise, and finish with a smoothie made with all those superfoods (yes, even kale). At the end of the day, you can look back and say, “Today, I was in charge, and I won.”

***

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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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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Life Doesn’t Allow Do-overs, So Move On from Guilt

do-overs

Sometimes, I beat myself up when something goes wrong in my life. I convince myself that if I had only done it this way instead of that way, things may have turned out so much better. Or, if I had only said something different, I might have been more helpful. But there are no do-overs in life.

Truth versus a lie

Isn’t it much easier to play the negative tapes stored in the recesses of our brains than it is to listen to truth tapes? It is for me.

I remember arriving at one of my Parkinson’s appointments several years ago carrying a load of guilt. If only I hadn’t used so much bleach to whiten the clothes or so much 409 to clean the cupboard doors. Ant spray, wasp spray — you name it, I’d probably used it. I had truly convinced myself I’d had something to do with “getting” Parkinson’s. My doctor finally helped to lift my burden by telling me the truth: It wasn’t my fault.

Blaming ourselves

There are many things that, if given the opportunity, we would likely go back in time to do differently. Since life doesn’t allow do-overs, however, we are not able to fix what has been done. We have to accept that either we did the best we could with our resources and knowledge or that we did indeed goof up. If the latter is the case, then we need to forgive ourselves and move on.

There is no room for “if I had only” in this life. It just keeps us bound to the lies that rob us of our joy.          

If I had only …

Do you blame yourself for having Parkinson’s disease? Do you sometimes play the “if I had only” game with yourself?

The next time this tape plays in your head, tell yourself the truth: You are not to blame. Just because you like clean cupboard doors or your whites to be white, you didn’t set yourself up to have Parkinson’s. However, now that you have it, you are responsible for doing the best you can to keep it at bay as long as possible.

Your exercise regimen, nutritional choices, and other controllable factors affect how you will live with this disease. Make the best possible choices for yourself and move on, making sure you leave the blame game behind.

***

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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Updated Canadian Guideline Reflects Latest Advances and Adds Palliative Care Section

Canadian Guideline Parkinson's

Updated recommendations on Parkinson’s disease have been published in the Canadian Guideline for Parkinson Disease, which includes a new section about palliative care.

Focused on issues relevant to the Canadian healthcare system, the update reflects the latest evidence and advances — particularly regarding diagnostic criteria and treatment options — and draws on recommendations from the United States, Scotland, the United Kingdom, and the European Union.

The Parkinson Canada-funded publication, which was published in the Canadian Medical Association Journal, offers fundamental guidance to healthcare professionals, patients, and families, and was developed with help from experts in Canada from various disciplines.

“This guideline provides evidence-based recommendations to improve the overall standard of care of individuals with Parkinson disease in Canada, not only for healthcare professionals, but also for policy makers, patients themselves, and their caregivers,” Veronica Bruno, MD, a neurologist with a subspecialty in movement disorders at the University of Calgary, said in a news release. “Managing the complexity of Parkinson disease requires clear, standardized procedures that can be used by all actors involved.”

The new guideline has five sections: communication, diagnosis and progression, treatment, non-motor features, and palliative care, which was added in this update. Palliative care, including an option of medically assisted death, should be considered throughout the course of the disease, the publication states.

“End-of-life choices, including advanced care planning with an open and frank discussion with the patient and the person designated as decision-maker, should be initiated early in the disease process,” the guideline says. “Conversations occurring in the ambulatory setting are likely to be more productive and less crises-driven than leaving such conversations until an acute stay in hospital.”

Other highlights include:

“A limitation to implementing the guideline is the lack of access to health care providers experienced in caring for people with Parkinson disease,” David Grimes, a neurologist at The Ottawa Hospital, said.

“In addition to specialist physicians, we need more nurses, and speech, occupational and physical therapists with training in this area, as well as adequate palliative care for Parkinson patients,” he added.

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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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