‘Get Busy Living, or Get Busy Dying’: Our Mantra in Life With Parkinson’s

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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…
• 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…
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• People with Parkinson’s: Meet the Portland to Coast Team! July 22, 2022 In case you missed our exciting news, The Brian Grant Foundation (BGF) has formed the first-ever Portland to Coast Relay Team made up of a diverse group of people living with Parkinson’s disease and their loved ones. Parkinson’s disease is the fastest growing neurological condition in the world, impacting over 10 million people of all ages, backgrounds, and identities. BGF…
• 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…
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• 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…
• Life in the Presence of Parkinson’s: A Daily Mantra May 12, 2022 “Gratitude is the greatest prayer. Thank you is the greatest mantra.” Swami Nithyananda “My mantra: Brainless exercise is a lost opportunity for improvement.” Michael Merzenich Definition: Mantra, man·tra (/ˈmantrə/) noun: mantra; plural noun: mantras.1. (originally in Hinduism and Buddhism) A word or sound repeated to aid concentration in meditation. “A mantra is given to a trainee meditator when his teacher…
• 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…
• 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…
• 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…
• 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…
• A Lack of Understanding Creates an Opportunity for Positive Change December 13, 2022 Our family loves musical theater. My husband, Arman, and I used to go to the theater often before we had children, and we were thrilled when our kids also took an interest. Our daughters, Lexy and Mandy, were involved in local community theater productions from a young age. As a little boy, our son, Jake, loved to attend his sisters’…
• 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…
• 500 April 22, 2021 # # # # I started writing about the research being conducted in Parkinson’s in 2014.  If I’m honest, it was simply an experiment. Having failed to write the next great kiwi novel (think Katherine Mansfield, Margaret Mahy, Witi Ihimaera, Eleanor Catton, and most recently Rose Carlyle), to distract myself I started playing around with science writing to see if…
• 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…
• Reader Response: “Grief” January 26, 2020 One of my New Year’s Resolutions for 2020 is to explore death at an intellectual level by reading what greater and more articulate minds than mine have written on the subject.  Thus, I recently read the first-person narrative, “Grief,” written by V.S. Naipaul, and published in The New Yorker on January 6. To review this article, I will follow the…
• Journey With Parkinson’s: (Part 2) A Different Side of Life November 2, 2020 “Yesterday is but today’s memory, and tomorrow is today’s dream.” Khalil Gibran “Time is free, but it’s priceless. You can’t own it, but you can use it. You can’t keep it, but you can spend it. Once you’ve lost it you can never get it back.” Harvey Mackay Introduction: I am a scientist, trained as a protein chemist with expertise…
• 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…
• Moments of Victory® – Parkinson Pete Embraces the Lessons of Parkinson’s August 24, 2020 Each month, we spotlight someone in our community who has an inspiring story to tell. Today, we are happy to feature Pete Beidler from Seattle, WA. What has your journey been like since your Parkinson’s diagnosis? In 2006, when I was sixty-six, I signed the papers signaling my intention to retire after forty years of teaching English at Lehigh University…
• Moments of Victory® – Parkinson Pete Embraces the Lessons of Parkinson’s August 24, 2020 Each month, we spotlight someone in our community who has an inspiring story to tell. Today, we are happy to feature Pete Beidler from Seattle, WA. What has your journey been like since your Parkinson’s diagnosis? In 2006, when I was sixty-six, I signed the papers signaling my intention to retire after forty years of teaching English at Lehigh University…