"Regardless of your religion or your political position, hope is the most powerful weapon you can employ to combat Parkinson's disease" Michael S. Okun
Look also at: Parkinson’s News – Parkinson’s News Forums – Parkinson’s Life – Handstand for Parkinson – Parkinson Foundation – The Michael J. Fox Foundation – EndingPD Live – EPDA What about Parkinson’s – Parkinson’s Travel – World Parkinson Coalition – Parkinson’s and Me – Movement Disorders Health Advocate – Fighting Parkinson’s Drug Free – Parkinson’s Recovery Project – The No-Escape Room – PD Avengers – Parkinson Alliance – Parkinson Secrets – It is what it is – Dance Well – Davis Phinney Foundation For Parkinson’s –
23-11-2020 Barriers and Motivators to Engage in Exercise for Persons with Parkinson’s Disease / IOS Press
Sabine Schootemeijer: Proud to share the second paper of my PhD: a comprehensive review of the barriers and motivators to engage in exercise for people with Parkinson’s disease. Now available in the Journal of Parkinson’s Disease.
Exercise is increasingly being recognized as a key element in the overall management of persons living with Parkinson’s disease (PD) but various (disease-specific) barriers may impede even motivated patients to participate in regular exercise. We aimed to provide a comprehensive review of the various barriers and motivators for exercise in persons with PD. We scrutinized data on compliance-related factors published in cross-sectional studies, randomized controlled trials and reviews. We classified the barriers and motivators to exercise from a patient perspective according to the International Classification of Functioning, Disability and Health. We present an overview of the large range of potential motivators and barriers for exercise in persons with PD. Healthcare professionals should consider a wide and comprehensive range of factors, in order to identify which specific determinants matter most for each individual. Only when persons with PD are adequately motivated in a way that appeals to them and after all person-specific barriers have been tackled, we can begin to expect their long-term adherence to exercise. Such long-term compliance will be essential if exercise is to live up to its expectations, including the hope that prolonged engagement in regular exercise might help to modify the otherwise relentlessly progressive course of PD.
Read more at IOS Press
20-11-2020 Sanofi sponsors Parkinson’s Foundation’s genetic study with $1M for free testing / Fiers Pharma
It’s estimated that 10% to 15% of people with Parkinson’s have a genetic form of the disease and Sanofi Genzyme is backing a new study to help find those people.
Working with the Parkinson’s Foundation, the effort, called PD GENEration, will provide free genetic testing, either by in-person blood testing at selected sites or by a telemedicine appointment combined with at-home cheek swabs. Follow-up counseling will also be provided to discuss the results. Sanofi will contribute $1 million to the study over the next two years.
The goal of the testing is to identify the specific genetic status of people with Parkinson’s, which can lead to better identification for clinical trials and more personalized therapies.
The Sanofi-backed study will inform participants when “trials become available that are relevant to their genetic status,” James Beck, senior VP and chief scientific officer at the Parkinson’s Foundation, said in an email.
“Because we are banking the DNA to share in a de-identified fashion, we are hopeful that the results obtained through this study will also impact future research to develop improved treatments and personalized medicine for Parkinson’s,” he said.
Read more at Fiers Pharma
16-11-2020 What’s Next for Parkinson’s: Big Trials, New Treatments and Steps toward Prevention / The Michael J. Fox Foundation
Hear the latest news in Parkinson’s research from Foundation and field leaders. Our panelists will look ahead to treatments up for approval soon, new trials starting early next year and a major expansion of our landmark PPMI study to enable preventive therapies. We’ll also discuss initiatives to better understand Parkinson’s genetics across populations. Panelists and MJFF staff will answer questions from the audience throughout the hour.
Register here at The Michael J. Fox Foundation
09-11-2020 “Finding information about being a woman with Parkinson’s was challenging” / Parkinson’s Life
Ireland-based author and academic Kathleen Reardon discusses the challenges of finding resources focusing on women and Parkinson’s – and shares her advice on making sure you’re heard by your doctor
“Doctors can assume that a woman with Parkinson’s disease is depressed because expectations of amicable expression are greater for women”Kathleen Reardon
I was diagnosed with Parkinson’s in 2002. I’d noticed something not quite right at the age of 49 but it took over two years of disagreements about what was wrong with me – doctors disagreed, mainly because I had mostly non-motor symptoms at first. I felt adrift. Then a doctor was visiting at the place where I had an appointment. The visiting doctor quietly walked up to me after I was told it wasn’t Parkinson’s and privately said, “Come see me. It looks like Parkinson’s to me”.
He took a sincere interest and insisted that I cease teaching at my university despite my protestations. “You’ve done an outstanding job of that for over 25 years,” he said emphatically. “You have other interests. Do those now or we’ll find ourselves having to treat you with far more medication. You don’t want that.” It was difficult to take that advice as I love teaching, but I trusted him. He was outstanding.
I struggled with how much to tell my children, especially since I didn’t know how Parkinson’s would affect me. My approach was to keep doing things as I’d always done them, including playing basketball with my children, traveling with my family, attending their activities and more until each of those things became too difficult. Fortunately, the difficulties didn’t come all at once and as they got older much of what we did together didn’t require physical endurance.
Read more at Parkinson’s Life
06-11-2020 Michael J. Fox Reveals Painful Setback That Led to His ‘Darkest Moment’ Since Parkinson’s Diagnosis / People Exclusive
Michael J. Fox is opening up about the “darkest moment” of his life that occurred two years ago.
Speaking with PEOPLE for this week’s cover story, the Family Ties actor, who went public with his Parkinson’s diagnosis in 1998, discusses the unrelated health setback that led him to question his signature optimism — and how he gained it back.
In 2018, a noncancerous tumor on Fox’s spine was growing rapidly and causing horrible pain throughout his body. “I was heading for paralysis if I didn’t get it operated on,” Fox, 59, tells PEOPLE.
However, the surgery to remove it was risky. The tumor “was constricting the [spinal] cord, so they had to be very careful in removing it so they wouldn’t do further damage,” he says.
Read more at People Exclusive
06-11-2020 Update from D.C.: EPA Allows Usage of Hazardous Pesticide Paraquat to Continue in the U.S. / The Michael J. Fox Foundation
The Environmental Protection Agency (EPA) reapproved several pesticides on October 23 for use in the United States. One of those pesticides is paraquat, a chemical known to increase the risk of Parkinson’s disease (PD).
Every 15 years, the EPA reviews all herbicides and pesticides to confirm they are safe for use. This review process takes several years and has many steps. The latest round of pesticide review and reapprovals, known as interim decisions, finalizes the EPA’s assessments of human and environmental impact and allows the pesticide to be bought and used until it is reviewed again.
Many studies show that exposure to paraquat increases risk of PD, and it is associated with several other health issues and risk of death. People are exposed to paraquat through the air, and it’s also transferred onto clothing and will subsequently rub off onto furniture in homes. This endangers families living in rural areas, not only the farmers who use the pesticide.
“A lot of communities are in danger. This is not just a farmer or blue-collar working issue,” said Edwin Zane, 49, whose father was diagnosed in 2014 after years of being exposed to chemicals and pesticides because of his job. “This is a quality of life issue for everybody.”
Read more at The Michael J. Fox Foundation
30-10-2020 Caregivers Month 2020 / Parkinson Foundation
Sometimes you can find frontline heroes without ever leaving your front door 💙 This #NationalFamilyCaregiversMonth, we’re honoring the extra work our caregiving community put in throughout 2020 to keep our loved ones safe at home. Thank your #HeroAtHome by making sure they have the resources they need to live better as they care for a loved one living with Parkinson’s disease 🤝📚💻 Parkinson.org/HeroAtHome #Care4PD
30-10-2020 World’s first clinical trial with CDNF*: Aiming for a breakthrough in Parkinson’s / EPDA
Wednesday 18 November, 2020 at 13:00 – 17:30 GMT Topic’s included:
• 12-month clinical data on intraputamenal CDNF in #Parkinsons patients; including a panel discussion with clinical investigators of the study.
• Clinical data on the investigational drug delivery system in subjects with Parkinson’s. Register to join the webcast, here: https://lnkd.in/dR4YDcp
25-10-2020 Virtual conference of the Medical Affairs Professional Society (MAPS) 9 November from 13:00 – 14:30 CET with Bas Bloem / MAPS EMEA 2020
“I hope you will join me at the EMEA 2020 virtual conference of the Medical Affairs Professional Society (MAPS), where I am pleased to be presenting as a Keynote Speaker. My session takes place on Monday, 9 November from 13:00 – 14:30 CET and will focus on the Future of Care. Learn more and RSVP to the conference here: https://lnkd.in/dEEtzJF. Looking forward to a great discussion, and I hope to see you there. ##medicalaffairs #jointhemovement #parkinson #endingPD #ParkinsonPACT “
MAPS is proud to be the global leader in connecting the Medical Affairs community and providing an environment designed for passionate professionals to collaborate with peers on best practices, to share experiences, and to attend informative sessions and discover innovative solutions to everyday challenges. Attendees leave our events energized and ready to implement new ideas that will positively impact their teams and their organizations.
This year we were so excited to bring a truly memorable experience to the Medical Affairs community in the Europe, Middle East and Africa region. Little did any of us know that we would have to grapple with a once in a lifetime global pandemic. COVID-19 has transformed the way we live and transformed many facets of our profession. While it has devastated everyone from those living in major cities to small rural townships, it has also shone a bright light on the important work each of you are doing to continue providing patient access to medicine.
Don’t miss participating in the MAPS EMEA 2020 Annual Meeting this November 9-11 – for the first time, virtually!
Join in here at
25-10-2020 A Public Policy Agenda and Movement to Reduce Parkinson’s Disease Burden Gains Momentum / NeurologyToday
Four movement disorders experts hope to jumpstart a movement to advocate for more research funding and a ban in neurotoxins known to be associated with Parkinson’s disease to reduce the disease burden worldwide.
Four neurology experts are working to foment a grassroots movement that demands an end to the Parkinson’s disease (PD) status quo.
“We’re failing to prevent the disease; we’re failing to treat it appropriately; we’re failing to come up with new therapies,” said E. Ray Dorsey, MD, MBA, a professor of neurology at the University of Rochester in New York.
The facts he cites: The number of people with PD has doubled in the past 25 years. The most effective treatment is more than 50 years old. About 40 percent of Americans diagnosed with PD do not receive care from a neurologist in the first four years after diagnosis. And one of the pesticides that is most strongly linked to PD has doubled in use in the US in the past decade.
Dr. Dorsey collaborated with three colleagues—Michael S. Okun, MD, FAAN, chair of neurology and executive director of the Norman Fixel Institute for Neurological Diseases at the University of Florida; Bastiaan R. Bloem, MD, professor of neurology at Radboud University Medical Centre in Nijmegen, the Netherlands; and Todd Sherer, PhD, chief executive officer of the Michael J. Fox Foundation for Parkinson’s Research (MJFF) — to develop a four-pronged strategy to reduce the burden of PD worldwide. They call their approach the PACT: Prevent the disease, Advocate for protective policies and funding, Care for patients by increasing access to specialty care, and Treat the condition better by developing innovative therapies.
Read more at NeurologyToday
25-10-2020 Read: The Fox Focus 2020 Fall/Winter / Michael J. Fox Foundation
Read here the ‘Fox Focus on Parkinson’s” Fall/Winter 2020
23-10-2020 Complementary & Alternative Medicine Care in Parkinson’s Disease / Bastyr University
Laurie K Mischley ND PhD MPH of the University of Washington, Department of Radiology (Research) Bastyr University Research Institute (Research),
Zoekt Parkinsonians die deel willen nemen aan een nieuw study voor een Food List wat in 2021 gepresenteerd gaat worden. Ben je geïnteresseerd meld je je dan hieronder aan,
Parkinson’s Disease is often said to be an incurable, progressive, and degenerative disease. It is our hypothesis that some of you do not, or will not, have a progressive disease. The goal of this PD study is to collect as much data as possible over a five-year period with the hope of finding dietary and lifestyle factors associated with a slower disease progression.
What are the “Positive Deviants” doing?
“Positive Deviance is based on the observation that in every community there are certain individuals or groups (the positive deviants), whose uncommon but successful behaviors or strategies enable them to find better solutions to a problem than their peers. These individuals or groups have access to exactly the same resources and face the same challenges and obstacles as their peers.
The Positive Deviance approach is a strength-based, problem-solving approach for behavior and social change. The approach enables the community to discover existing solutions to complex problems within the community.” www.positivedeviance.org
Read More at Bastyr University
21-10-2020 Webcast seminar: World’s first clinical trial with CDNF*: Aiming for a breakthrough in Parkinson’s / EPDA
Wednesday 18 November, 2020 at 13:00 – 17:30 GMT
Topic’s included: • General information on #Dopamine Neurotrophic Factor #CDNFF) and its use in the first-in-human #clinicaltrial. • 12-month clinical data on intraputamenal CDNF in #Parkinsons patients; including a panel discussion with clinical investigators of the study. • Clinical data on the investigational drug delivery system in subjects with Parkinson’s.
*CDNF clinical trial has received funding from the European Union’s Horizon 2020 research and innovation program under grant agreement No 732386.
Register to join the webcast, here: https://lnkd.in/dR4YDcp
Survey on drooling (sialorrhea) in Parkinson’s
Dear friends, we would very much appreciate your participation in a short survey that focuses on the often-overlooked symptom of drooling (sialorrhea). Research shows that this affects 75-80% of people with Parkinson’s and is described as excessive or uncontrolled saliva beyond the margin of the lip.
Read more on EPDA
21-10-2020 ITTF Parkinson’s World Table Tennis Championshipspostponed to 09. – 11. September 2021 / ITTF Foundation
Dear players, visitors and friends,
we are still very excited to be organizing the 2nd ITTF Parkinson’s World Table Tennis Championships 2021 in Berlin.
As the local organizing committee, together with the ITTF Foundation and the German Table Tennis Association DTTB we have decided that due to COVID-19 it is reasonable to postpone the PWTTC once more to 09.-11. September 2021. Regarding the current uncertain corona situation we see it as our duty to act carefully and responsibly for the benefit of all concerned.
We are optimistic that next year the worldwide situation will allow us to welcome 300 participants as well as many relatives and friends to a cheerful tournament in Berlin on the 9th of September 2021!
Read more at ITTF Foundation
21-10-2020 Everyone has a story, what’s your parkinson story? Share it! / Parkinson Foundation
Have you ever stopped to think about how powerful YOUR Parkinson’s story is? Just as it highlights your own journey and resilience, it can help inspire others on their PD journey, including the families and friends who support them. Let’s explore the importance of storytelling. We’ll offer a guide for ways to get started and unique ways to share the story only you can tell.
PD Health @ Home October Wellness Wednesday programs will be a unique series of social activities encouraging you to try something new while meeting others in the PD community.
*This is a virtual program, taking place live, using the online Zoom platform. Instructions on joining the webinar are provided after registering.*
19-10-2020 The Parkinson@Home Validation Study / Bas Bloem on Facebook
Excited to share our new paper in JMIR where we assess whether wearable sensors can be used to objectively monitor response fluctuations in persons with #Parkinson in real life. To do this, we recorded people with Parkinson’s in and around their own homes, while they performed their usual activities. Using this new, shareable reference dataset, we show that it is feasible to detect changes in real-life #gait performance after intake of dopaminergic medication, using a single #sensor. At the same time, we illustrate some important challenges that should not be overlooked when measuring patients in real-world settings. #wearables
16-10-2020 Parkinson’s and Impulse Control / Ending Parkinson’s Disease, Dr Bas Bloem
Parkinson’s and problems with impulse control – Dr. Bas Bloem, co-author of Ending Parkinson’s Disease, breaks it down. Full video in comments. Message us for information on how to fight Parkinson’s today with the power of the Internet.
Read more at Ending Parkinson’s Disease
14-10-2020 Home-cooked meals, fresh fruit, non-fried fish, nuts, wine, olive oil are associated with fewer PD symptoms over time / EndingPD / Dr. Laurie K Misch
Thank you to Dr. Laurie K Misch for sharing her work on Parkinson’s and nutrition with the Parkinson’s Secrets blog, and providing these very informative graphs!
Dr. Mischley earned her medical degree in Naturopathic Medicine (ND) at Bastyr University and her degrees in Epidemiology (MPH) and Nutritional Sciences (PhD) at the University of Washington. She earned her B.S. in Nutritional Sciences from Pennsylvania State University. Her work is focused on identifying the nutritional requirements unique to people with parkinsonism.
Read more about Dr. Laurie K. Mischley ONGOING RESEARCH STUDIES here
14-10-2020 Parkinson’s Foundation, Amazon’s Alexa Partner to Share Quality Information / Parkinson’s Foundation / Parkinson’s News Today
Alexa-enabled devices now cite Parkinson’s Foundation sources, in English or Spanish, when answering questions about the disease. Alexa is available on Amazon Echo devices and third-party devices that offer it built-in.
“We are thrilled to work with Amazon to move into this exciting world of smart speakers to help even more people gain access to the information about PD they need most,” John L. Lehr, foundation president and CEO of the Parkinson’s Foundation, said in a press release.
“Our hope is that this partnership will help us further reach and better support the PD community throughout every stage of their journey.”
Read more at Parkinson’s Today
12-10-2020 MILESTONE! There are now more than 1,000 PD Avengers! / PD Avengers
Now we have 1000 PD Advengers! around the World. If each of us reach 5 persons with parkinson more, we have 5000 members. Do you help us to get 5000 members?
We are united to end Parkinson’s. @RayDorseyNeuro@basbloem@MichaelOkun#endingPD#PDAvengers
08-10-2020 5 Lifestyle Habits To Improve your Parkinson’s Disease / Parkinson’s Secrets Blog
Who is Dr. Mischley?
Dr. Mischley’s work is focused on identifying nutritional requirements unique to individuals with neurodegenerative diseases. She has conducted research on coenzyme Q10, lithium, and glutathione (GSH) deficiency in the setting of Parkinson’s Disease (PD). As a clinical trialist, she is interested in determining whether intranasal GSH boosts brain GSH and potentially improves PD outcomes . She developed the PRO-PD rating scale and is developing a PD screening tool, ParK-9; using dogs to identify the scent of PD from ear wax. She is principal investigator of the “CAM Care in PD” study which is designed to identify the relationship between lifestyle choices and risk of PD progression. As a naturopathic physician, she maintains a clinical practice at Seattle Integrative Medicine and conducts research in collaboration with the University of Washington and Bastyr University.
We sat down with Dr. Mischley to pick her brain and to better understand the direction her research is taking. She is passionate to help those with PD and although her data is preliminary it is a really interesting discussion.
Read here the 5 Lifestyle Habits To Improve your Parkinson’s Disease on Parkinson’s Secrets Blog
05-10-2020 Parkinson’s Foundation Expands PD GENEration Research Study to Include Genetic Testing and Counseling At-Home / Parkinson’s Foundation
MIAMI & NEW YORK – September 29, 2020 – The Parkinson’s Foundation today announced that it has expanded PD GENEration: Mapping the Future of Parkinson’s Disease to include at-home genetic testing and counseling in English and Spanish for people with Parkinson’s disease (PD) at no cost. PD GENEration is the first national Parkinson’s study to offer bilingual genetic testing at-home or in a clinical setting with counseling.
Potential PD GENEration participants can determine eligibility with a brief questionnaire online. After a screening appointment via telephone, they will schedule a virtual testing appointment. Participants will receive their genetic testing kit in the mail, which they will open and use with guidance from a healthcare professional during their virtual testing appointment. They will then discuss their genetics results with a counselor during a follow-up appointment.
“The Parkinson’s Foundation has adapted to help the PD community gain access to this valuable and empowering information from the safety and comfort of their homes during the ongoing COVID-19 pandemic and beyond,” said James Beck, PhD, Chief Scientific Officer of the Parkinson’s Foundation. “We are looking forward to continuing this research study so that we may one day soon be able to provide precision treatments for the one million Americans living with Parkinson’s disease.”
Read more at Parkinson’s Foundation
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05-10-2020 7 Strageties to Deal with the Excuses and Barriers Limiting Exercie in Parkinson’s Disease / Parkinson’s Secrets Blog
Who is Alison Kraus? Alison is a PT, DPT, NCS and is a board certified neurologic physical therapist specializing in Parkinson’s disease and vestibular dysfunction. She received a doctorate in Physical Therapy from Ithaca College, and a BS in clinical health studies. She currently works at the University of Florida Norman Fixel Institute for Neurological Diseases (UF Health Rehab). She is a member of the interdisciplinary teams for patients seeking deep brain stimulation surgery, patients with atypical parkinsonism and she is also a vestibular therapist for the Traumatic Brain Injury team. She works to coordinate care with local and non-local physical therapists to promote wellness in patients with Parkinson disease; Alison also works as an adjunct faculty member for University of Florida Department of Physical Therapy. She assists with lecturing, and hands on laboratory sessions, for their neurological rehabilitation curriculum. She works to teach future physical therapists the many ways they can be vital team members in the care of people with PD.
We sat down with Ali to pick her brain on strategies to deal with the excuses and barriers limiting exercise in Parkinson’s disease.
1. Stiffness – “My hips, shoulders, neck, and
back are so stiff… my legs feel heavy when I
Read more at Parkinson’s Secret Blog of Michael Okun
27-09-2020 USING MUSIC TO HEAL AND LIVE WELL WITH PARKINSON’S / Davis Phinney Foundation for Parkinson’s
There’s no denying that the isolation from shelter-in-place orders that have hit some of our communities has disrupted daily life, including our access to healthcare, social activities, and exercise. This has impacted our Parkinson’s community significantly, contributing to an increase in motor- and non-motor symptoms.
As we move forward in this hopefully temporary and short-lived new normal, we are all seeking ways to improve our daily lives that are also easy to access.
What better way than music?
There are three major benefits of using music to cope during stressful times.
Or you can borrow ours! Check out our Happy Dance Playlist on YouTube.
Read more on the website of Davis Phinney Foundation for Parkinson’s
Together, we can end Parkinson’s.
View resources below to help us Prevent, Advocate, Care for, and Treat Parkinson’s.
Show your commitment to ending this disease by adding your name here.
25-09-2020 Neurological Consequences of COVID-19: The “Silent Wave” / Journal of Parkinson’s Disease
Mebourne, Australia – Is the world prepared a wave of neurological consequences that may be on its way as a result of COVID-19? This question is at the forefront of research underway at the Florey Institute of Neuroscience and Mental Health. A team of neuroscientists and clinicians are examining the potential link between COVID-19 and increased risk of Parkinson’s disease, and measures to get ahead of the curve.
“Although scientists are still learning how the SARS-CoV-2 virus is able to invade the brain and central nervous system, the fact that it’s getting in there is clear. Our best understanding is that the virus can cause insult to brain cells, with potential for neurodegeneration to follow on from there,” said Professor Kevin Barnham from the Florey Institute of Neuroscience & Mental Health.
In a review paper published today in the Journal of Parkinson’s Disease, researchers put spotlight on the potential long-term neurological consequences of COVID-19, dubbing it the “silent wave”. They are calling for urgent action to be taken to have available more accurate diagnostic tools to identify neurodegeneration early on and a long-term monitoring approach for people who have been infected with the SARS-CoV-2 virus.
The researchers report that neurological symptoms in people infected with the virus have ranged from severe, such as brain hypoxia (lack of oxygen), to more common symptoms such as loss of smell.
“We found that loss of smell or reduced smell was on average reported in three out of four people infected with the SARS-CoV-2 virus. While on the surface this symptom can appear as little cause for concern, it actually tells us a lot about what’s happening on the inside and that is that there’s acute inflammation in the olfactory system responsible for smell,” explained Florey researcher Leah Beauchamp.
Inflammation is understood to play a major role in the pathogenesis of neurogenerative disease and has been particularly well studied in Parkinson’s. Further research into these illnesses may prove critical for future impacts of SARS-CoV-2.
“We believe that loss of smell presents a new way forward in detecting someone’s risk of developing Parkinson’s disease early. Armed with the knowledge that loss of smell presents in around 90% of people in the early stages of Parkinson’s disease and a decade ahead of motor symptoms, we feel we are on the right track,” added Ms Beauchamp.
Clinical diagnosis of Parkinson’s disease currently relies on presentation of motor dysfunction, but research shows that by this time 50–70% of dopamine cell loss in the brain has already occurred.
Read more at Journal of Parkinson’s Disease
25-09-2020 Seven Reasons /
Thank you for watching! Please see below for more details.
Seven Reasons is a moving and compelling 5-minute video that highlights the profiles of Africans living with Parkinson’s disease. This video is part of a larger initiative, led by PD Avengers (www.pdavengers.com) to address the issue of inequitable access to healthcare and to ultimately #endparkinsons Thumbs up please, if you like the video, and subscribe to the channel so I can keep you updated about this very important cause, and definitely, PLEASE SHARE. We are hoping to spread this message far and wide. Lastly, if you are able to contribute any amount, whatsoever, to help fund Parkinson’s meds for those in need, that would also be incredible. Here is the link: https://www.gofundme.com/f/seven-reas…
Thank you all so much!
Aanbevolen door UMG
25-09-2020 Cognitive Changes Are Most Challenging Symptom for Parkinson’s Care Partners, Research Reveals / Parkinson’s News Today
Cognitive changes in people with Parkinson’s disease pose a substantial challenge for their care partners, new research suggests.
The findings were presented at the 2020 Congress of Parkinson’s Disease and Movement Disorders (held virtually due to the COVID-19 pandemic) by researchers from the Parkinson’s Foundation, in a poster titled, “The Care Partner Perspective: Most Challenging Parkinson’s Symptoms.”
Parkinson’s disease can manifest in a variety of motor and non-motor symptoms. In addition to the obvious toll these symptoms take on the person with the disease, a person’s Parkinson’s symptoms also can affect the well-being of their care partners (a broad term referring to people in the life of a person with Parkinson’s who help to provide care).
Read more at Parkinson’s News Today
25-09-2020 Ask the Expert: How can clinical trials ‘slow, stop and reverse’ Parkinson’s disease? / Parkinson’s Life
What are clinical trials, why are they so important – and what does participation involve? We talk to Dr. Simon Stott and Helen Matthews of The Cure Parkinson’s Trust about how clinical trials are helping researchers better understand Parkinson’s disease and what potential participants need to know
Why are clinical trials important in Parkinson’s disease research?
Helen Matthews, Deputy CEO of The Cure Parkinson’s Trust: We simply cannot find a cure without conducting clinical trials to test new approaches. We can’t find a cure without the thousands of Parkinson’s volunteers who are so generously committed to participating and supporting research.
Dr Simon Stott , Deputy Research Director bij The Cure Parkinson’s Trust: Any new medical treatment for humans must go through a rigorous clinical evaluation process, examining its safety and efficacy, before health regulators allow the treatment to be used in the clinic.
We can learn a lot about the potential biology of Parkinson’s from preclinical models of the condition, but it’s not until we actually test our theories in humans that we get a real understanding of the disease. Studies in large clinical cohorts are important to gain a better understanding of the underlying pathology of Parkinson’s and to provide better methods of measuring the progression of the condition.
Read more at Parkinson’s Life
16-09-2020 Coexistent Osteoarthritis and Parkinson’s Disease: Data from the Parkinson’s Foundation Outcomes Project / PubMed.gov / National Library of Medicine
Jaimie A Roper 1, Abigail C Schmitt 2, Hanzhi Gao 3, Ying He 4, Samuel Wu 3, Peter Schmidt 5, Michael S Okun 6 7, Chris J Hass 2 6, Fernando Cubillos 6, Parkinson’s Foundation Quality Improvement Initiative Investigators
Background: The impact of concurrent osteoarthritis on mobility and mortality in individuals with Parkinson’s disease is unknown.
Objective: We sought to understand to what extent osteoarthritis severity influenced mobility across time and how osteoarthritis severity could affect mortality in individuals with Parkinson’s disease.
Methods: In a retrospective observational longitudinal study, data from the Parkinson’s Foundation Quality Improvement Initiative was analyzed. We included 2,274 persons with Parkinson’s disease. The main outcomes were the effects of osteoarthritis severity on functional mobility and mortality. The Timed Up and Go test measured functional mobility performance. Mortality was measured as the osteoarthritis group effect on survival time in years.
Results: More individuals with symptomatic osteoarthritis reported at least monthly falls compared to the other groups (14.5% vs. 7.2% without reported osteoarthritis and 8.4% asymptomatic/minimal osteoarthritis, p = 0.0004). The symptomatic group contained significantly more individuals with low functional mobility (TUG≥12 seconds) at baseline (51.5% vs. 29.0% and 36.1%, p < 0.0001). The odds of having low functional mobility for individuals with symptomatic osteoarthritis was 1.63 times compared to those without reported osteoarthritis (p < 0.0004); and was 1.57 times compared to those with asymptomatic/minimal osteoarthritis (p = 0.0026) after controlling pre-specified covariates. Similar results hold at the time of follow-up while changes in functional mobility were not significant across groups, suggesting that osteoarthritis likely does not accelerate the changes in functional mobility across time. Coexisting symptomatic osteoarthritis and Parkinson’s disease seem to additively increase the risk of mortality (p = 0.007).
Conclusion: Our results highlight the impact and potential additive effects of symptomatic osteoarthritis in persons with Parkinson’s disease.
Keywords: Comorbidity; Parkinson’s disease; arthritis; mobility; mortality.
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16-09-2020 4th-generation DBS System, Vercise Genus, Available in Europe / Parkinson’s News Today
A treatment approach for Parkinson’s disease, DBS involves surgically implanting a neurostimulator to deliver electrical impulses to targeted regions of the brain that control movement, pain, mood, and the like. It is believed that these electrical signals interrupt abnormal signaling patterns in these regions.
DBS is used to treat disabling neurological symptoms in people with advanced Parkinson’s, such as tremors, rigidity, stiffness, slowed movement, and walking problems.
In Europe, the Vercise Genus DBS System is indicated for use in the treatment of levodopa-responsive Parkinson’s that is not adequately controlled with medication alone. It is also indicated for certain individuals with dystonia, a movement disorder characterized by uncontrollable muscle contractions, or tremors.
Read more at Parkinson’s News Today
12-09-2020 Parkinson’s Disease: We Care! / IOS Press Content Libery
In a benchmark relative to eight other chronic disorders, Parkinson’s disease has emerged as one of the most debilitating conditions, with a tremendous negative influence on quality of life, both in terms of its motor disability and nonmotor disability . Additionally, Parkinson’s disease is among the fastest growing neurological conditions in the world . Taken together, Parkinson’s disease exerts an enormous global impact on the lives of millions of patients and their families, and to mounting costs for society. It is therefore time for action! .
Read more at IOS Press Content Libery
06-09-2020 From the Editors-in-Chief of JPD / Journal of Parkinon’s Disease / IOS Press Content Library
Moving Forward in Times of Crisis
A series of valuable contributions in JPD illustrate the enormous impact of the COVID-19 crisis on the Parkinson field. Several contributions address the lessons learned around the use of telemedicine, in both clinical Parkinson’s disease (PD) care and in research studies. Miocinovic and colleagues provide very pragmatic recommendations on how to optimally manage patients with implanted deep brain stimulation electrodes. A provocative viewpoint raises the possibility that the neurotropic effects of SARS-CoV-2 – which can enter the brain via olfactory pathways – could potentially trigger the neurodegenerative cascade underlying PD and thereby further accelerate the rise in PD that appears to be taking place over recent decades.
In a recent editorial in the Journal of Parkinson’s Disease , we alerted our readers to the speed at which the times are changing – the field of Parkinson’s disease itself being no exception. That editorial from 2018 introduced a special issue that contained a series of papers that depicted how Parkinson’s might look like 20 years from now. How little did we know at the time just how radically different the world would look today, now that the unfolding COVID-19 crisis has hit the world. It has been impressive how the Parkinson’s world has responded to the unprecedented challenges, for example with an accelerated introduction of telemedicine as a service to patients, many of whom are grounded at home, or unable to travel to medical centers for an in-person evaluation. But also with new fundamental research, aimied at understanding how the severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2) virus affects multiple organs, including the brain.
We are proud that the Journal of Parkinson’s Disease has emerged as an important and timely forum where many of these new developments in the field of Parkinson’s disease or parkinsonism are being discussed. The present volume contains a series of valuable contributions that illustrate the enormous impact of the COVID-19 crisis on the Parkinson field. Several contributions address the lessons learned around the use of telemedicine, in both clinical Parkinson’s care and in research studies. Miocinovic and colleagues provide very pragmatic recommendations on how to optimally manage patients with implanted deep brain stimulation electrodes. A provocative viewpoint raises the possibility that the neurotropic effects of SARS-CoV-2 – which can enter the brain via olfactory pathways – could potentially trigger the neurodegenerative cascade underlying Parkinson’s disease and thereby further accelerate the rise in Parkinson’s disease that appears to be taking place over recent decades. But science and research have obviously continued during the COVID-19 crisis, and you will find that this present volume is richly larded with many more fine fundamental and applied research contributions dedicated to Parkinson’s disease.
Read more at IOS Press Content Library
04-09-2020 The challenges and joys of writing with Parkinson’s / Parkinson’s Life
“I’ve had Parkinson’s for over 15 years, and it has had a significant impact on my writing and editing”Kathleen Reardon
An interview with Kathleen Reardon, writer and editor,
We hear from acclaimed Ireland-based author and academic, Kathleen Reardon, about her “frightening” Parkinson’s diagnosis, the challenges of being a writer with the condition – and how she has adapted to keep doing what she loves
Tell us a bit about your books – what are you currently working on?
I have published 10 non-fiction and two fiction books, while another one is in the works. Most of the non-fiction books were written when I was a professor and are about communication, negotiation and politics at work. The crime mysteries take place in academia. ‘Shadow Campus’ will take place at a university in Los Angeles, USA, ‘Damned If She Does’ at a conference in New York City, USA, and the third book in the trilogy takes place in West Cork, Ireland.
How does Parkinson’s affect your writing?
I’ve had Parkinson’s for over 15 years, and it has had a significant impact on my writing and editing. Before Parkinson’s, I could read, research, teach, and write for hours every day while raising my children and being social.
One of the first signs of the condition in me was reduced concentration. So my first novel was published in 2013 and the second seven years later. Fatigue, stiffness, and dizziness are the result of writing for more than an hour at a time. For years my tremor was not very noticeable, but now it affects word processing.
Can’t really complain. As long as I don’t overdo it, writing also has therapeutic benefits. It keeps me sharper than I otherwise would be. And knowing that people enjoy reading the novels brings joy, just like my painting .
Read more at Parkinson’s Life
02-09-2020 We CAN end Parkinson’s Disease in the future / Twitchy Woman
‘Parkinson’s Disease is not inevitable. Parkinson’s Disease is rather preventable.’RAY DORSEY MD
Can we prevent Parkinson’s Disease in the future? Dr. Ray Dorsey, one of the co-authors of the book “Ending Parkinson’s Disease“, says that we can. On Sunday, August 23, Dr. Dorsey spoke to our Sunday Mornings with Twitchy Women group on Zoom. He said that the major premise of this important book is that Parkinson’s is a man-made disease, caused by exposure to chemicals, and it is preventable.
Parkinson’s was rarely seen before the Industrial Revolution began more than 200 years ago. Man-made chemicals and pollutants were spewed into the air from industry everywhere. In England, the air became so thick with noxious chemicals, it became know as the “London Fog.” It was at this time, in 1817 that Dr. James Parkinson wrote his groundbreaking paper on the “Shaking Palsy” after observing 6 men with tremors, a bent posture, an abnormal gait and a tendency to fall.
Twitchy Women CAN help end Parkinson’s for Future Generations
We Are Fighters
‘We have been called PD Warriors, PD Avengers, PD Fighters and more. We are superheroes. Let’s show the world that we are all of these and that we can make a difference for our children and our children’s children by eradicating one of the major causes of Parkinson’s Disease today.’
Read the whole story at Twitchy Woman
02-09-2020 MDS Virtual Congress 2020 / International Parkinson and Movement Disorder Society
Registration for MDS Virtual Congress 2020 is now open. Click here to register.
Click here to view to view the Virtual Congress Preliminary Program.
The MDS Virtual Congress 2020 scientific sessions, sponsored symposia, virtual exhibits, and poster sessions will be available on demand for free until October 1, 2020 for those participants who have registered by September 16, 2020. After October 1, 2020 the Virtual Congress will continue to be available on demand for MDS Members for a limited time. Join as a MDS Member here.
Read more at International Parkinson and Movement Disorder Society
02-09-2020 Submit Your Story / Parkinson’s Foundation
Please share with us how your life has been affected by Parkinson’s disease (as someone with the disease, caregiver or family member). Tell us what challenges you have overcome and what keeps you happy, healthy and hopeful. What can you share with others that will help them keep moving forward?
Fill up the form here at Parkinson’s Foundation
28-08-2020 Healthy Diet Tied to Fewer Symptoms That Often Precede Parkinson’s / Parkinson’s News today
A diet rich in fruit, vegetables, and nuts appears to lower the risk of several non-motor symptoms that tend to be associated with a later finding of Parkinson’s disease, a study reported.
The study, “Diet pattern and prodromal features of Parkinson’s disease,” was published in the journal Neurology.
A team of Harvard University researchers looked at how diet might associate with symptoms that often precede Parkinson’s, such as constipation, daytime sleepiness and depression, and for patterns that might arise.
Such symptoms can precede a Parkinson’s diagnosis by 10 years or more.
Read more at Parkinson’s News Today
23-08-2020 Dance Well / CSC Bassano (ITALIË) / World Dance for Parkinson’s Day
Dance Well – movement research for Parkinson’s, was born with the aim of including people with Parkinson’s disease through contemporary dance in the artistic and social life of their territories.
It is an initiative promoted by the Municipality of Bassano del Grappa with its Centro per la Scena Contemporanea, member of the European Dancehouse Network.
The classes, free of charge and open to all. They are held every Monday and Friday morning at the Museum of Bassano del Grappa, every Thursday evening at Teatro Civico in Schio, and every Wednesday and Friday afternoon at Villa Margherita in Arcugnano. The artistic spaces where they take place, and the source of inspirations that the context brings, distinguish the initiative from many others held in traditional dance studios, rehabilitation rooms or gyms. Participants are called Dance Well dancers.
Read more at World Dance for Parkinson’s Day
12-08-2020 PD Health @ Home / Parkinson’s Foundation
The Parkinson’s Foundation is dedicated to bringing the Parkinson’s disease (PD) community virtual educational and wellness programs through PD Health @ Home.
As some of us continue social distancing, we do not want members of our community to emotionally isolate, which is why PD Health @ Home provides weekly online events designed for you. Engage and join us virtually for our PD Health @ Home days:
Read more and sign in at Parkinson’s Foundation
12-08-2020 It is what it is / Tom Eckhardt
Last month marked the 7th anniversary of my official “you have Parkinson’s Disease” diagnosis from my first neurologist. During the past 7 years I’ve become very knowledgeable about PD, discovered tennis, turned into an exercise junkie to help slow the progression of my PD, and moved to Florida. Meanwhile, after 200 + years Levadopa/Carbidopa, discovered 50 years ago, continues to be the main treatment for the symptoms of PD. A lot of research has been done trying to identify the cause of PD and a number of new medications have been developed to deal with the symptoms of PD but…
Read more at TomsPDBlog
09-08-2020 PD GENEration: Successful Pilot Study Uncovers New Findings / Parkinson’s Foundation
PD GENEration: Successful Pilot Study Uncovers New Findings
The goal of PD GENEration is to leverage genetics as a powerful tool to help us uncover what is responsible for slowing or stopping the progression of Parkinson’s, which will ultimately improve care and speed the development of new treatments. Study results will advance how we design clinical trials, for instance, testing a new medication based on what type of PD gene a person carries.
As the first national Parkinson’s study to offer bilingual genetic testing in a clinical setting with counseling, the Parkinson’s Foundation flagship study has unearthed exciting preliminary findings.
Read more at Parkinson’s Foundation
09-08-2020 NSAIDs May Lower LRRK2 Parkinson’s Risk, Study Asserts / Parkinson’s News Today
Mutations in LRRK2 are one of the most common genetic abnormalities associated with Parkinson’s disease, though this is incompletely penetrant — meaning not all people with LRRK2 mutations are certain to develop Parkinson’s.
Read more at Parkinson’s News Today
09-08-2020 Michael J. Fox Reveals What Makes ‘Back To The Future’ Timeless Ahead Of 35th Anniversary / ACCESS Hollywood / Michael J. Fox Foundation
November 2019 – Michael J. Fox is going “Back to the Future”! The legendary actor reminisces about the classic hit in honor of the film’s upcoming 35th anniversary with Access Daily hosts Scott Evans and Kit Hoover. The star reveals what makes the flick totally timeless. Plus, Michael gets candid about his fight to find a cure for Parkinson’s disease with his nonprofit foundation, The Michael J. Fox Foundation for Parkinson’s Research.
04-08-2020 EndingPD my review / Hans van Geluk
Report/Review for EPDA, of The Book ‘ENDING PARKINSON’S DISEAES: A PRESCRIPTION FOR ACTION’
First, I would like to thank the EPDA for asking me to review the book ‘Ending Parkinson’s Disease: A Prescription for Action’ for them.
In addition, I would like to thank the writers and their teams in advance for their progressive informed decision to write for us Parkinsonian’s this guide, this bible for Parkinson’s.
I therefore see Ending PD as an ‘umbrella’, an umbrella body under which all Parkinson’s groups could fall.
The book gives you an immediate insight into how all industrial and agricultural operations can point a direct finger at the ‘co’ potential causes of the onset of Parkinson’s.
I am therefore naming this a ‘Welfare Disease’ that is unprecedented!
For us Parkinsonians and partners, caregivers, neurologists, Parkinson’s nurse, and everyone else involved, a handle to ensure that we are heard and seen in a progressive, determined, and collaborative way.
Not only for us Parkinsonian’s, but most certainly also for Generation Z and Generation Alfa. To save them from this pandemic more and in time!
I would say:
‘Stand up for our wellbeing, speak up for our rights and let’s do this together. We are United!’
Read the short version of my review here,
“Since my diagnosis, I have read many books about Parkinson’s, but Ending Parkinson’s Disease is in my view the best. For me, it is an eye opener which has made me think about what I may have been exposed to during my working life that could have caused me to develop Parkinson’s.
“When I was younger, I worked as a sailor and when we fixed the boat, we used lead paint. I also briefly worked for a printing company where a mechanical accident meant that I got covered in silver paint – I had to use a solvent to remove it from my hair. Later on, I worked as a trade agent in robotic systems, metal processing machines and parts, which involved visiting metal companies, factories and foundries where metal, aluminium and iron were processed. Furthermore, I worked as a driving instructor for about 35 years, where you are exposed to exhaust gases. Other facts in the book that surprised me is that both smoking and coffee can reduce the severity of Parkinson’s. Although I smoked in my younger years, I haven’t done so for 20 years. I also used to drink coffee a lot, but as I had thrombosis, my cardiologist advised me to drink more water instead. After reading the book, I am keen to do more physical activity and plan to buy an E three- or four-wheel bike because I have become unsteady on a two-wheel bike. As for the Mediterranean diet the book suggests, my wife and I have been following this for about five years – Italian food is our passion.
“Although a lot is written in the book about problems in the US, we can translate these findings to other countries. The book reveals that in some places there are no neurologists for people with neurological disorders and therefore PwPs, and this concerns me. I think we should make a strong case to global organisations such as the World Health Organisation (WHO) to provide financial assistance for PwPs who do not have access to medical care. We also need to work together with governments, federations, pharmaceutical companies and the pesticide manufacturers. We need to keep talking to each other, because the more distance there is between us the less we can achieve.
The book also says that while drugs for cancer and HIV/AIDS are readily available, this is not the case for levodopa, which has a drastic effect on PwPs’ quality of life. Here, too, we must make a stand to change this.
“I hope that together with my fellow PwPs and agencies such as the EPDA, the authors of Ending Parkinson’s Disease and The Michael J. Fox Foundation, we can do something to stop Parkinson’s and to prevent it from afflicting future generations.
“I would like to thank the writers for writing this bible for PwPs. I highly recommend this book for PwPs and our loved ones as well as healthcare professionals.”
01-08-2020 Our book competition winners review Ending Parkinson’s Disease / EPDA
Our competition winners tell us what they think of the book, Ending Parkinson’s Disease: A Prescription for Action
Back in April we ran a reader competition to win a copy of Ending Parkinson’s Disease: A Prescription for Action by Dr Ray Dorsey, Dr Todd Sherer, Dr Michael Okun and Dr Bastiaan Bloem in exchange for a review of the book. Read on to find out what our winners thought.
“Ending Parkinson’s Disease is very easy to read and insightful, collating information about Parkinson’s into a single source, as well as bringing a new perspective”Russ Bradford
“It is an eye opener which has made me think about what I may have been exposed to during my working life that could have caused me to develop Parkinson’s”Hans Van Geluk
“This book enlightens the reader about the number of people around the world who are experiencing Parkinson’s symptoms but who haven’t had a diagnosis and therefore do not have access to treatment”Jennifer Dawber
“From reading this book, I realise that the problem is not the average life expectancy of a person with Parkinson’s, the percentage of health professionals per capita, or the medicines that we are developing and improving every single day; the problem is that we have the wrong lifestyle”Sara Cabral
- Ending Parkinson’s Disease: A Prescription for Action book website
- Parkinson’s Life – “It is time for us to act more aggressively to end Parkinson’s”
01-08-2020 Watch The Future of Parkinson’s Care by Prof. Bas Bloem
Prof. Bas Bloem discusses the future of Parkinson’s Disease leading up to World Brain Day 2020 which is dedicated to Parkinson’s Disease awareness. Prof. Bas Bloem is the medical director of the Department of Neurology at Radboud University Medical Center.
Learn more about World Brain Day 2020 and find ways to get involved at wfneurology.org/world-brain-day-2020