Shedding light on how Parkinson’s disease sabotages self-worth

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• The road ahead: 2022 January 20, 2022 # # # # The first post at the start of each year on the SoPD website tries to provide an overview of where things are in the search for ‘disease modifying’ therapies for Parkinson’s.  It is an exercise in managing expectations as well as discussing what research events are scheduled for the next year so that we can keep…
• The road ahead: 2021 January 25, 2021 # # # # At the start of each year, it is a useful practise to layout what is planned over the next 12 months. The events that are scheduled for the year to come, so that we can keep an eye out for them. Obviously, where 2021 will end actually is unpredictable, but an outline of what is scheduled…
• 'Sunday Morning Futures' on Biden's mental capacity, Jill Biden comparing Latinos to tacos August 1, 2022 This is a rush transcript from "Sunday Morning Futures" July 17, 2022. This copy may not be in its final form and may be updated.MARIA BARTIROMO, FOX NEWS ANCHOR: Good Sunday morning, everyone. Welcome to "Sunday Morning Futures." Thanks so much for joining us. I'm Maria Bartiromo. Today: weakness on the world stage. President Biden coming home from the Middle East…
• The road ahead: 2020 January 5, 2020 Here at the SoPD, we are primarily interested in disease modification for Parkinson’s. While there is a great deal of interesting research exploring the causes of the condition, novel symptomatic therapies, and other aspects of Parkinson’s, my focus is generally on the science seeking to slow, stop or reverse the condition. At the start of each year, it is a…
• Speech, Voice & Parkinson’s Q&A with John Dean January 28, 2021 We recently hosted a webinar with speech-language pathologist John Dean. You can get access to the recording here. We received so many questions during the session that we weren’t able to answer them all; so, John was kind enough to do some written Q&A for us. “When is a good time to start speech therapy?” It’s much better to maintain…
• I have Parkinson’s and am experiencing X. Who should I see? February 10, 2020 We receive emails every day from people wondering who they should see for a wide variety of issues that often go hand-in-hand with Parkinson’s. Since it comes up often enough, we decided to create a guide that answers exactly that.    To put this piece together, we gathered up the 15 most frequently asked questions we’ve received from our community members…
• The Brilliant 10: The top up-and-coming minds in science October 19, 2022 Popular Science There’s a phrase that rings loudly in the heads of Popular Science editors any time we bring together a new Brilliant 10 class: “They’ve only just begun.” Our annual list of early-career scientists and engineers is as much a celebration of what our honorees have already accomplished as it is a forecast for what they’ll do next. To…
• Six Pillars of Parkinson’s December 11, 2022 “In all human affairs there are efforts, and there are results, and the strength of the effort is the measure of the result.” James Allen “Storms make trees take deeper roots.” Dolly Parton NOTE ADDED IN PROOF: Earlier today, I inadvertently published this post’s unfinished and unproofed version. It was titled “6 Pillars of Parkinson’s.” I apologize for pushing the…
• Not Why Me?… But Try Me! January 22, 2020 Has the reality of Parkinson’s disease got you feeling down? From the moment you open your eyes in the morning, you can feel the grasp of Parkinson’s pressing down on. Every limb feels heavy and stiff. You struggle to roll over in your bed as you glance at the clock. It seems like time continues marching on without you… as…
• Fan Fiction: The Joke Machine February 19, 2021 Parking Suns reader David Schneider contributed this amusing-but-still-kinda-scary short story about a man dealing with Parkinson’s on a typical day. Thank you, David! The Joke Machine – – David Schneider Once a friend had come for a weekend visit and ended up staying for two years. The “guest” paid half the rent and slept with a single blanket on the…
• PD 101: Exercise, Medication, Nutrition & Lifestyle December 4, 2016 Since being diagnosed with PD in 2014, I've had the pleasure to meet individuals who have lived with Parkinson's for 10 to 20 years, and even longer. The common theme for living well with PD is regular exercise and staying active. PD may be a life sentence, but it is far from being a death sentence. Think of exercise as…
• Light Therapy for Parkinson’s Disease October 12, 2022 Light therapy and Parkinson’s disease Light therapy, or the use of light as a treatment for disease, is being investigated in many neurologic conditions including as a treatment for some of the symptoms of Parkinson’s disease (PD). Light therapy encompasses a large category of treatments involving different types of light and delivery systems. More research still needs to be done…
• The impacts of internalized stigma May 25, 2022 Internalized stigma, or self-stigma, is made up of the negative perceptions and beliefs we hold about ourselves. These beliefs can be based on previous experiences where hurtful remarks or judgements were made about us or based on our fears of receiving those harmful messages (whether they’ve actually happened before or not). The journey you take to overcome internalized stigma so…
• APDA’s Newly Funded 2023 Research Awardees September 13, 2022 On September 8, 2022, APDA announced 27 new research grants for the year ahead. Our grant recipients are working tirelessly to understand the complexities of Parkinson’s disease (PD) to develop new treatments and eventually, a cure. We are honored to support our researcher’s work. We awarded $2.35 million to support cutting-edge PD research for the 2022-2023 year – a 25% increase in…
• How to Share Your Parkinson’s Diagnosis with Family, Friends, and Co-workers February 5, 2020 You’ve been diagnosed with Parkinson’s. Now what? Do you tell people? If so, how, who, and when? Whether you’ve been recently diagnosed, you’ve known for a while but don’t know how to tell people, or you’ve told people but aren’t satisfied with how it went, we hope this information will be useful. While not all of these situations will apply…
• The Attitude of Gratitude in the Presence of Parkinson’s November 18, 2022 “The only thing you should feel entitled to is gratitude,” J.S. Mason “He is a wise man who does not grieve for the things which he has not, but rejoices for those which he has.” Epictetus Introduction: The blog post’s title is not meant to suggest one needs to be grateful for having a neurodegenerative disorder like Parkinson’s. To say…
• The influence of influenza November 25, 2021 # # # # The potential long-term consequences of viral infections is not a popular topic for a research blog in the middle of a pandemic (and yes, we are still in the middle of it!), but there is a recent Parkinson’s-related report that is worth discussing. Researchers have recently looked at medical records dating back several decades and noticed…
• A Parkinson’s Diagnosis: You Still Control Your Life March 10, 2020 “Your life is a work of art that you will work on the rest of your life.” Richard Blanco “Today is the first day of the rest of your life, and if you screw that up, you can start again tomorrow.” Ingrid Weir A Not So Typical “Anniversary” Blog Post:Six years ago this week, I received my diagnosis from my…
• Words with Hope December 8, 2021 “There is no medicine like hope, no incentive so great, and no tonic so powerful as expectation of something better tomorrow.” Orison Swett Marden “Hope is a waking dream.” Aristotle Introduction: Over the years, I have used blog posts about a specific word, feeling, or emotion. A frequent word used a lot here is the word ‘hope’. To some, hope may…
• Bringing Parkinson’s awareness to the big screen: John’s story January 25, 2022 How John Became an Unlikely Celebrity When John Capone was first diagnosed with Parkinson’s disease (PD) at the young age of 39, he never imagined acting in a movie with A-list celebrities. The news of his diagnosis was tough to handle at first, and he quickly John Caponebecame overwhelmed by depression and anxiety. But this tough guy was determined to…
• The “What would I do” post? Part 2 January 22, 2022 # # # # I am very regularly asked “what would you do if you were diagnosed with Parkinson’s tomorrow?” As a research scientist I don’t really feel comfortable answering it, but I can see how it is a fair question. I have previously attempted to address it (Click here to read that post), and I point folks who do…
• Bayer doubles down on Parkinson’s? December 10, 2020 # # # # News today of two biotech companies merging did not cause much of a ripple in the media, but the wider implications of the move are rather significant for Parkinson’s. Today it was announced that Brain Neurotherapy Bio (BNB) is going to merge with Asklepios Biopharmaceutical (aka AskBio). BNB are currently clinically testing a GDNF gene therapy…