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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