Month: May 2019

As the Parkinson’s community prepares to convene in Kyoto next week for #WPC2019 (World Parkinson Congress 2019), my observation for today is that there is one tradition of Asian cultures that is not particularly Parkinson’s friendly or accommodating ... chopsticks. People with Parkinson’s in this part of the world must have serious challenges with traditional meals. The western world’s “Parkinson’s vs. the soup spoon” is trivial in comparison and hardly seems worth complaining about. I’ll be curious if there is any increased awareness of this issue in Kyoto next week. We’re visiting Beijing and Tokyo enroute to Kyoto. Tonight’s dinner ...

Wayne A. Gilbert’s “PD Refusenik” is an entertaining and introspective protest of a conscientious objector being asked to battle Parkinson’s. Wayne is, among other things apparently, a lover, not a fighter...but Parkinson's is a formidable opponent in another poem "Parkinson's Is Nothing Like Boxing". He is also a retired teacher and professor of English and of Educational Psychology. He was diagnosed with Parkinson’s in 2005 and has been writing about his experiences living with it ever since. I have enjoyed the performances by Wayne A. Gilbert that have been shared by the Davis Phinney Foundation over the past few weeks, including these highlights: ...

Weekly Update - Highlights include: Looking ahead to World Parkinson Congress 2019 and back at WPC2016; a vacuum cleaner analogy that sucks; Help Wanted (for this website); dyskinesias Dancing; Losing your grip (and where to look for it); don't take CBD Oil to Disney; pick your PD therapy - hockey or karate; research study says strength training makes you breathe hard; Kirk Gibson; Olympic dreams for PD skier; reducing dementia risk; and more ...

Losing your grip is more than just an analogy about Parkinson’s Disease. Quite literally, it's a physical manifestation of the disease, and one of the areas that is tested in the Unified Parkinson's Disease Rating Score (UPDRS) motor score that is used to measure the severity of Parkinson's Disease. There was an interesting study several years ago that found that declining grip strength on its own, was a good indicator of PD progression. https://www.ncbi.nlm.nih.gov/pubmed/25653226 Why is this significant? Well, as Parkinson's gets worse, you lose more and more of your ability to grip, and this has negative impact on quality ...

Earlier this year, Nate Coomer, founder of The Parkinson’s Fitness Project, launched The Daily Dose: an exercise program designed to benefit those with Parkinson’s Disease that can be done from the comfort of their own home, while still providing the benefit of community and guidance by a certified physical therapist. A local TV station in Seattle reports on Nate Coomer’s online exercise program for Parkinson’s Disease, the Daily Dose PD: ...

Alexander Tressor is a broadway dancer and ballet instructor who was diagnosed with Parkinson’s in 2007. He founded PDOnTheMove.com to share the exercise programs and lifestyle changes that have worked for him fight back against Parkinson’s. If you’re looking for ideas to improve or extend your home exercise routine, his website is a fantastic resource with hours of suggested workouts and a free library of individual exercises. More: https://pdonthemove.com/ Gifted with a fantastic sense of humor, he also spends time as a motivational speaker for Parkinson’s groups. His 2012 video “Shaken, Not Stirred” is a YouTube Parkinson’s classic…light-hearted, entertaining and educational: ...

Weekly Update - Highlights include: On-line Parkinson’s Exercise programs; another clinical trial treatment can't beat the placebo; feral pigs vs. placebo; dancing with your dog; Parkinson’s choruses sing for their supper; What I Wish I Knew, But Am Glad I Didn’t Know (When I Was Diagnosed With Parkinson’s); and more ...

This title sounds like something Yogi Berra might have said. Like baseball, Parkinson's Disease is 90% mental and the other half is physical. (I think that's actually quite a profound analysis of life with PD.) What I wish I knew when I was first diagnosed with Parkinson's is that a lot of people continue to lead long active lives with Parkinson's Disease for 10 to 20 years, and even longer, and some actually lead more active and more productive lives post-diagnosis. John Cleese once said, "Life is a terminal disease, and it is sexually transmitted." Parkinson's by contrast, is neither ...

Parkinson’s Life profiled Jennifer Parkinson, who was diagnosed with young onset Parkinson’s Disease 14 years ago at the age of 32. After 4 years of worsening symptoms, she discovered boxing, and testifies “Boxing changed my way of life and gave my kids their mum back.” Jennifer now runs a non-profit boxing and fitness organization helping people with Neurological disorders such as Parkinson’s, MS, Stroke, and Traumatic Brain Injury. https://parkinsonslife.eu/theres-a-stigma-that-if-you-dont-look-sick-then-there-is-nothing-wrong/ Find out more about Jennifer's Neuroboxing program: https://www.neuroboxing.org ...

Weekly Update - Highlights include: Mayo Clinic researchers explore the relationship between low levels of Vitamin B-12 and Parkinson’s; appendix removal might or might not affect Parkinson’s risk; monkey butt research finds PD related proteins linked to inflammation; impulse control disorders and PD; Pharmaceutical News from the Annual Meeting of the American Academy of Neurology; technology targets freezing of gait; creating your own placebo effect; inspiring people with Parkinson's talk boxing, DBS and poetry; and more ...

A Cal Poly (California Polytechnic State University) student project to help a local military veteran has become a business designed to help patients with Parkinson’s disease overcome a debilitating and dangerous symptom known as “freezing of gait.” De Oro Devices, based in San Luis Obispo, California, recently edged out six other startups for a $100,000 investment during the second annual Central Coast Angel Conference Pitch Competition held in April by the university. While working on the project as part of the Quality of Life Plus (QL+) program, which pairs the challenges of wounded vets with student projects, student Sidney Collin ...

Researchers hate the placebo effect, but for many of us with Parkinson’s, placebos help get us through the day. Maybe it’s a vitamin & supplement regimen, or your diet. Maybe there are foods you will or will not eat at particular times of the day. Maybe it’s your art or music. Maybe it’s your exercise routine. Maybe it’s your bicycle. Maybe it’s swimming. Maybe it’s dancing. Maybe it’s meditation. Maybe it’s neurofeedback. Maybe it’s yoga or tai chi. Maybe it’s a sport. Maybe it’s table tennis. Maybe it’s poetry. Maybe it’s your gun therapy. Maybe it’s a red light bucket ...

(Author's Note: Oops, I pressed the button to publish this article and video compilation before it was complete. Please consider it a work in progress.) Balance Training is not a Parkinson's specific issue, it is an issue for everyone as they age. Selecting the appropriate balance exercises will depend on how good your balance currently is. There are many factors that affect balance, and it can be argued that all leg strengthening and core strengthening and flexibility exercises are, in a way, balance exercises. I've highlighted a few videos that provide ideas to consider when selecting balance exercises. If you ...

Mayo Clinic has published a research commentary that analyzes the relationship between low levels of Vitamin B-12 and Parkinson's Disease. While the paper does not prove causality, it does "propose that vitamin B12 supplementation could be considered as an adjuvant approach to improve cholinergic transmission and, potentially, motor and cognitive function in patients with PD." And it makes a case for "future clinical trials of high-dose vitamin B12 supplementation as a well-tolerated symptomatic adjunctive therapy for posture and gait instability and cognitive impairment in PD." Mayo Clinic Video: The paper analyzes the potential relationship between vitamin B12 and acetylcholine metabolism. Dysfunction ...

Parkinson’s News Today profiled Jim McNasby, a New York City attorney who was diagnosed with Parkinson’s 20 years ago at the young age of 30. After recently having had Deep Brain Stimulation (DBS) surgery, he wonders why he waited so long. https://parkinsonsnewstoday.com/2019/05/03/lawyer-parkinsons-disease-describes-positive-effects-dbs/ Update: Jim McNasby has also been profiled by Healthline: https://www.healthline.com/health-news/this-man-with-parkinsons-experienced-improvement-after-trying-deep-brain-stimulation ...

The Davis Phinney Foundation profiled Brian Reedy, who was diagnosed with Parkinson’s Disease 8 years ago, and explains how forced intense exercise has changed his life for the better. He tried exercising on his own, and worked with two physical therapists, but only saw continual decline in his ability. Then he found a physical therapist that pushed him hard with exercises that would challenge his deficits. They weren’t preset “Parkinson’s exercises”, they were exercises based on assessment of his abilities, that challenged him and pushed him to exceed his expectations: https://www.davisphinneyfoundation.org/blog/how-intense-exercise-changed-my-life-with-parkinsons/ ...

Paula Caldwell was diagnosed with Parkinson’s 14 years ago. Now in her early 70’s, she was certified as a Rock Steady Boxing coach two years ago, and has helped bring the RSB program to a local boxing gym in a suburb of Youngstown, Ohio, to help others battle PD: https://www.wkbn.com/news/local-news/boardman-woman-fighting-parkinson-s-brings-new-training-program-to-local-gym/1974905438 Update: Another local TV station visits the gym: http://www.wfmj.com/story/40545558/boardman-woman-introduces-boxing-classes-to-punch-out-parkinsons ...

Ned Neuhaus was diagnosed with Parkinson’s 6 years ago, and decided to channel his effort toward helping others by bringing Rock Steady Boxing to his community in central Illinois. Local news visited Ned’s gym last week: https://hoiabc.com/news/peoria-news/2019/04/29/boxing-through-the-challenge-living-with-parkinsons-disease/ Ned talks about his journey accepting his Parkinson’s diagnosis on YouTube: Update July 22, 2019: PillPack shares more of Ned’s story - https://folks.pillpack.com/taking-a-swing-at-parkinsons-with-a-boxing-glove/ ...

The Irish Independent published a profile of Robin Simons.  Diagnosed 21 years ago when he was 40 years old, he reflects on a life with Parkinson’s  that has now been half of his adult life. He explains “I am a wonder of modern medicine. Fifty years ago, there was no effective treatments to help control the ‘shaking palsy’. No Levodopa, no APO-go morphine infusion pump and no deep brain stimulation (DBS) surgical procedure. Without these interventions, I certainly would not have lived the life I have. Is medicine on its own enough to have enabled me to live a fulfilling life? ...

Weekly Update - We start with why strength training should be a component of any exercise protocol for Parkinson's. Next, we find inspiration and life lessons from 6 individuals who challenge preconceived notions of Parkinson's Disease. In research news, after more than 10 years of study, a once promising drug candidate fizzles out; an interview with the doctor behind the spine tingling research featured last week; a biomarker that will bring a tear to your eye; the latest MJFox Foundation grants. Plus, we share some of our favorite updates from Parkinson's bloggers this week; Parkinson's exercise programs in the news; and ...