The Big 16: What to Say (and What Not to Say) to Someone Who Has Parkinson’s

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• 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…
• 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…
• 2019: Year in review December 31, 2019   In this end-of-year post, we review the Parkinson’s research that caught our attention at SoPD HQ in 2019. Month-by-month we will briefly discuss some of the major pieces of research/announcements that have defined the year and advanced our understanding of Parkinson’s. The list is based on nothing more than the author’s personal opinion – apologies to any researchers who…
• My Parkinson's Life Style Eating Plan May 11, 2018 I’ve been on the Keto diet, as well as several other Paleo and plant-based diets in hopes they would help my Parkinson’s symptoms. When my wife and I decided to get serious with our eating life style again, we looked at our options and our focus turned back to doing the Dr. Wahl’s version of the Paleo diet which we…
• Planet Patient vs Planet Researcher: From Both Sides, Now June 27, 2018 “I cannot always control what goes on outside. But I can always control what goes on inside.” Wayne Dyer “Judge a man by his questions rather than his answers.” Voltaire Setting the Stage: This is Mariëtte Robijn-  She lives in the Netherlands and was diagnosed with Parkinson’s at the young age of 46.  Mariëtte has a dynamic and vibrant blog…
• Planet Patient vs Planet Researcher: From Both Sides, Now June 27, 2018 “I cannot always control what goes on outside. But I can always control what goes on inside.” Wayne Dyer “Judge a man by his questions rather than his answers.” Voltaire Setting the Stage: This is Mariëtte Robijn-  She lives in the Netherlands and was diagnosed with Parkinson’s at the young age of 46.  Mariëtte has a dynamic and vibrant blog…
• Planet Patient vs Planet Researcher: From Both Sides, Now June 27, 2018 “I cannot always control what goes on outside. But I can always control what goes on inside.” Wayne Dyer “Judge a man by his questions rather than his answers.” Voltaire Setting the Stage: This is Mariëtte Robijn-  She lives in the Netherlands and was diagnosed with Parkinson’s at the young age of 46.  Mariëtte has a dynamic and vibrant blog…
• You’ve Been Diagnosed with Parkinson’s, Now What? February 20, 2018 Written by Tom Sheppard and Lauren Simmons If you’ve received a diagnosis of Parkinson’s, you may be feeling overwhelmed, devastated, angry, confused or all of the above. We felt the same way when we heard our doctors say, “You have Parkinson’s.” You wake up one day thinking about your grand plans for the future, and the next you realize your…
• 5 Ways to Live Well with Parkinson’s in 2019 January 8, 2019 It’s hard to ignore the feeling of newness in the air. The letting go of one year and welcoming in a new one and all of the possibilities it may provide. And, even if you’re not of fan of resolutions, you probably still have ideas of how you can live better in 2019. At the Davis Phinney Foundation, we certainly…
• 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…
• Shining a light on Parkinson’s November 7, 2019   NOTE: The information in today’s post should not be considered an endorsement of PhotoPharmics or the treatment they are proposing. The author of this blog has had no communication with the company. The information in this post is provided because the author has been asked by readers to discuss it. In October 2018, at the annual International Movement Disorders…
• Monthy research review – December 2019 December 30, 2019   At the end of each month the SoPD writes a post which provides an overview of some of the major pieces of Parkinson’s-related research that were made available during December 2019. The post is divided into seven parts based on the type of research: Basic biology Disease mechanism Clinical research New clinical trials Clinical trial news Other news Review…
• A Resource Guide of 18 Complementary Therapies for People with Parkinson’s August 7, 2018 Conventional medicine has come a long way when it comes to helping people with Parkinson’s live well. Between the many varieties and combinations of medications and deep brain stimulation (DBS), many people with Parkinson’s have been able to find conventional treatment regimens that work well for them. However, the options to help people with Parkinson’s live well doesn’t stop there.…
• 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…
• How to Bring Light to the Darker Side of Parkinson’s: A Primer on Hallucinations and Delusions and How to Manage Them July 18, 2018 When most people think of Parkinson’s, they think of the motor symptoms that often come with it: tremor, rigidity, slowness, shuffling. However, they are often unaware that Parkinson’s comes with a wide variety of non-motor symptoms that can affect thinking, mood and behavior as well. Parkinson’s disease psychosis is a non-motor symptom of Parkinson’s that causes people to experience hallucinations…
• Monthly research review: February 2020 February 29, 2020   At the end of each month the SoPD writes a post which provides an overview of some of the major pieces of Parkinson’s-related research that were made available during February 2020. The post is divided into seven parts based on the type of research: Basic biology Disease mechanism Clinical research New clinical trials Clinical trial news Other news Review…
• 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…
• My paper at WPC 5 – What the guinea pigs really want June 7, 2019 Here is the text for my recent presentation at the 5th World Parkinson Congress in Japan. WHAT DO THE GUINEA PIGS REALLY WANT? INTRODUCTION My job is to give the patient view of clinical trials. In fact, there is one word that sums up the patient’s view. That word is not treatment. It’s not doctors. It’s not alpha-synuclein. In fact…
• My paper at WPC 5 – What the guinea pigs really want June 7, 2019 Here is the text for my recent presentation at the 5th World Parkinson Congress in Japan. WHAT DO THE GUINEA PIGS REALLY WANT? INTRODUCTION My job is to give the patient view of clinical trials. In fact, there is one word that sums up the patient’s view. That word is not treatment. It’s not doctors. It’s not alpha-synuclein. In fact…