Podcasts about world parkinson congress

Donate to the World Parkinson Coalition to support this and future World Parkinson Congresses. World Parkinson Congress 2023 (WPC2023) was a true testament to unity and shared vision. It saw the participation of more than 2,600 people, drawn from 73 countries, all converging under one roof with one common objective: unraveling the mysteries of Parkinson's. This assembly comprised nearly a thousand medical doctors and researchers, 450 registered nurses, therapists, and other clinicians, 685 brave individuals living with Parkinson's, and 260 dedicated care partners and family members. In this episode, Larry and Rebecca share their experiences and discuss some of the most poignant lessons, enlightening stories, and groundbreaking revelations from the congress. They will introduce you people making a difference in their local communities and the world stage. KEY LINKS Our Presenting Partner is Parkinson Canada. Diagnosed with Parkinson's? You are not alone. Contact presenting partner Parkinson Canada http://www.parkinson.ca/, call the toll free hotline 1-800-565-3000 or on Twitter you can message @ParkinsonCanada. Tight Rope Theatre Improv for Parkinson's – Sign up NOW for fall classes “Improv for Parkinson's” – no experience necessary. The PwP Improv Players Arne Johansen Clara Kluge Larry Gifford Miriam Bram Peter Jarvis Shabbir Latif Dan Dumsha, Director -- Improv for Work & Wellness Rosemary Morrison – Improv for Wellness Coordinator Donate to help support the Amazing Rosemary who organized the Improv for Parkinson's troupe and found a theatre for us to perform in while in Barcelona. PD Avengers – We are building a global alliance to end Parkinson's. Join us. World Parkinson Congress WHO iSupport Thanks to: Julie Worden, Brooklyn, NY Dance for PD Jane Williams London, KY Parkinson's in Motion Amy Lavalle, Brian Grant Foundation www.briangrant.org Geoff Constable, Melbourne, Australia www.fightparkinsons.org.au WLGYP: What's your superpower? Tina Gillespie, South Australia, Australia Parkinson's South Australia Craig Gillespie, South Australia, Australia Parkinson's South Australia Sheena Botrill – South Australia, Australia Parkinson's South Australia  Eric Aquino, Eastern Pennsylvania Gray Strong Foundation – Trembling EMT Podcast  Dr. Tash (Natasha) Fothergill-Misbah Newcastle University Joy Milne, Ted X Manchester This Nurse Can Smell Parkinson's Disease WLGYP: A 3-minute test for a Parkinson's diagnosis WLGYP: World Parkinson Congress – Day 2 (Kyoto) Paul Mayhew Archer Incurable Optimist WLGYP: They say laughter is the best medicine Donate to the World Parkinson Coalition to support this and future World Parkinson Congresses. MAIL Larry and Rebecca: ParkinsonsPod@curiouscast.ca Have a topic or questions that you would like Larry & Rebecca to address on a future episode? We would love you to click here and leave a message  https://www.speakpipe.com/WhenLifeGivesYouParkinsons Follow us, Larry & Rebecca Gifford  Twitter: @ParkinsonsPod Facebook: Facebook.com/ParkinsonsPod Instagram: @parkinsonspod Thanks to Curiouscast Dila Velazquez – Story Producer Greg Schott – Sound Design

On this special bonus edition of Movers and Shakers – we'll be properly back from summer break in September – Rory Cellan-Jones, Gillian Lacey-Solymar and Paul Mayhew-Archer find themselves in Barcelona for the World Parkinson Congress. From the floor of the conference, the double-barrelled contingent catch-up on a fabulous week in the Catalan city and touch base with a number of inspiring and interesting figures from the Parky world: Neil Russell, Richelle Flanagan, Ray Dorsey, and Matt Eagles.Presented by Rory Cellan-Jones, Gillian Lacey-Solymar and Paul Mayhew-Archer.Edited by Nick Hilton for Podot.Music by Alex Stobbs.Artwork by Till Lukat.PR by Sally Jones.Movers and Shakers is generously sponsored by Boardwave, high powered Executive networking programme for European Software CEO, Non-Exec Directors, Chairs and their Investors. They are keen supporters of Cure Parkinson's. To find out more, visit https://cureparkinsons.org.uk/ Hosted on Acast. See acast.com/privacy for more information.

Larry & Rebecca Gifford dive into the growing interest and research being conducted around red light and infrared light laser therapy for Parkinson's disease. In Hamilton, Ontario PD Avenger and care partner Lorna Dueck, a retired radio and TV host, visits Gaitway Physical Therapy. She interviews physiotherapist Orla Hares and research assistant Jenna Sykes. Intrigued, Larry tracks down the CEO of Symbyx Biome, Dr. Wayne Markman of Australia, to discuss the handheld laser being used on the gut and vagus nerve and the infrared helmet – both designed to reactivate the mitochondria inside the dopamine cells.  and learns more about the research, science and tradition of therapy of light which dates back to Florence Nightingale in the 1850s. KEY LINKS Symbyx Biome https://symbyxbiome.com/en-ca CEO Wayne Markman featured in Forbes Australia ·        Find out how this Australian med-tech company is tackling Parkinson's disease Gaitway Physical Therapy https://gaitwayneurophysio.com/research/ Lorna Dueck https://lornadueckcreative.com/ ·        Context Beyond the Headlines: Lorna Dueck's journey through Parkinson's with her beloved Vern. Her final appearance as host of the TV Show featuring PD Avengers founders Soania Mathur, Tim Hague Sr, and Larry Gifford. APDA Light Therapy for Parkinson's Disease MAIL Larry and Rebecca: ParkinsonsPod@curiouscast.ca Have questions, comments, or a story idea? We would love you to click here and leave a message  https://www.speakpipe.com/WhenLifeGivesYouParkinsons Follow us, Larry & Rebecca Gifford  Twitter: @ParkinsonsPod Facebook: Facebook.com/ParkinsonsPod Instagram: @parkinsonspod Thanks to Curiouscast Dila Velazquez – Story Producer Greg Schott – Sound Design Our Presenting Partner is Parkinson Canada. Diagnosed with Parkinson's? You are not alone. Contact presenting partner Parkinson Canada http://www.parkinson.ca/, call the toll free hotline 1-800-565-3000 or on Twitter you can message @ParkinsonCanada. Thanks also to our content and promotional partners The Michael J. Fox Foundation's landmark study Parkinson's Progression Markers Initiative (PPMI)    PD Avengers – We are building a global alliance to end Parkinson's. Join us. World Parkinson Congress 2023 – It's time to make your congress and hotel registrations. Details on the website.  Spotlight YOPD – One of the only Parkinson's organizations dedicated to raising awareness for Young Onset Parkinson's disease and funds for the Cure Parkinson's Trust.  

Trichloroethylene (TCE). You cannot see it or smell it. It could be in the air you breath, the water you drink, and the food you eat. It is a carcinogen and is linked to clusters of cancer and Parkinson's. In Journal of Parkinson's Disease, Dr. Ray Dorsey at the University of Rochester and eleven colleagues have published a research article asking the question “Is Trichlorethylene an invisible cause of Parkinson's?” The authors go on to make a convincing case. Dr. Dorsey joins the podcast to explain the dangers of TCE, how it seeps into ground water, your home, schools, and office buildings, how to protect yourself, and where you can look to see if a TCE Superfund site is near where you live.  KEY LINKS BOOK: ENDING PARKINSON'S DISEASE; A PRESCRIPTION FOR ACTION JOURNAL OF PARKINSON'S DISEASE (SCIENTIFIC JOURNAL)  Trichloroethylene: An Invisible Cause of Parkinson's Disease? THE GUARDIAN (UK) Rates of Parkinson's disease are exploding. A common chemical may be to blame (TCE) Secret files suggest chemical giant feared weedkiller's link to Parkinson's disease (Paraquat) NEW YORK NEWSDAY (NY/USA) A NEWSDAY INVESTIGATION: The Grumman Plume; Decades of Deceit CBS MORNING (USA) Service members and families affected by toxic water at Camp Lejeune Marine base still seeking justice decades later LOS ANGELES TIMES (CA/USA) Is a common industrial chemical fueling the spread of Parkinson's disease? THE TORONTO STAR (ON/CAN) Dry cleaning chemical linked to Parkinson's in international study (2011/Canada) DAYTON DAILY NEWS (OH/USA) VOICES: How toxic industrial spills have contaminated our groundwater EPA FACT SHEET | TRICHLOROETHYLENE EPA SUPERFUND HOME PAGE  WIKIPEDIA CANADIAN FEDERAL CONTAMINATED SITES INVENTORY (FCSI) CONTAMINATED SITES HOMEPAGE Much gratitude for your content A Civil Action: Touchstone Pictures, Paramount Pictures, and Wildwood Enterprises, Inc  SaferChemicals on YouTube WATCH “TOXIC CHEMICAL LOBBY: EXCLUSIVE LEAKED FOOTAGE” EMAIL Larry and Rebecca: ParkinsonsPod@curiouscast.ca Have questions, comments, or a story idea?  We would love you to click here and leave a message https://www.speakpipe.com/WhenLifeGivesYouParkinsons Follow us, Larry & Rebecca Gifford  Twitter: @ParkinsonsPod Facebook: Facebook.com/ParkinsonsPod Instagram: @parkinsonspod Thanks to Curiouscast Dila Velazquez – Story Producer Greg Schott – Sound Design Our Presenting Partner is Parkinson Canada. Diagnosed with Parkinson's? You are not alone. Contact presenting partner Parkinson Canada http://www.parkinson.ca/, call the toll free hotline 1-800-565-3000 or on Twitter you can message @ParkinsonCanada. Thanks also to our content and promotional partners  The Michael J. Fox Foundation's landmark study Parkinson's Progression Markers Initiative (PPMI)   PD Avengers – We are building a global alliance to end Parkinson's. Join us.  World Parkinson Congress 2023 – It's time to make your congress and hotel registrations. Details on the website.  Spotlight YOPD – One of the only Parkinson's organizations dedicated to raising awareness for Young Onset Parkinson's disease and funds for the Cure Parkinson's Trust. 

The guys welcome Larry Gifford, a man on a mission to raise awareness and find a cure for Parkinson's disease. Diagnosed with Young Onset Parkinson's Disease at 45, Larry didn't let it slow him down. Instead, he co-founded PD Avengers, a global alliance working towards ending Parkinson's disease. Larry and his wife Rebecca also host the podcast "When Life Gives You Parkinson's," sharing their journey and inspiring others. Join us as Larry discusses his role as Ambassador for the World Parkinson Congress 2023 in Barcelona, his involvement with the World Health Organization, and his advocacy for stem cell research. Don't miss this opportunity to learn about the impact of Parkinson's disease and what you can do to help. Join the post-episode conversation over on Discord! https://discord.gg/expeUDN

The guys welcome Larry Gifford, a man on a mission to raise awareness and find a cure for Parkinson's disease. Diagnosed with Young Onset Parkinson's Disease at 45, Larry didn't let it slow him down. Instead, he co-founded PD Avengers, a global alliance working towards ending Parkinson's disease. Larry and his wife Rebecca also host the podcast "When Life Gives You Parkinson's," sharing their journey and inspiring others. Join us as Larry discusses his role as Ambassador for the World Parkinson Congress 2023 in Barcelona, his involvement with the World Health Organization, and his advocacy for stem cell research. Don't miss this opportunity to learn about the impact of Parkinson's disease and what you can do to help. Join the post-episode conversation over on Discord! https://discord.gg/expeUDN

Lithium is more than a drug, it's the third element on the Periodic Table of Elements. Symbol is LI. It's lightest metal known to mankind. Lithium-ion batters are used in electric cars. Lithium is also present in vaping devices, many personal electronics such as cell phones, tablets, and laptops, E-Bikes, electric toothbrushes, tools, hoverboards, scooters, and for solar power backup storage. Its origins can be traced back to the Big Bang.  For 70 years it's successfully been used to treat bi-polar disease. Now there's hope it could be game changing for Parkinson's disease. Tom Guttuso Jr., MD is a professor of Neurology at the University of Buffalo and Co Director of the Movement Disorder. His new book, titled the Promise of Lithium: How an Over-The-Counter Supplement May Prevent and Slow Alzheimer's and Parkinson's disease.” Dr. Guttuso joins the pod to discuss the potential of Lithium and stopping Parkinson's.  Much Gratitude for your music: Nirvana Lithium Evanescence Lithium Pink We've Got Scurvy from the album Sponge Bob's Greatest Hits The Steve Miller Band Fly Like an Eagle EMAIL Larry and Rebecca: ParkinsonsPod@curiouscast.ca Have questions, comments, or a story idea?  We would love you to click here and leave a message https://www.speakpipe.com/WhenLifeGivesYouParkinsons Follow us, Larry & Rebecca Gifford  Twitter: @ParkinsonsPod Facebook: Facebook.com/ParkinsonsPod Instagram: @parkinsonspod KEY LINKS  BOOK: The Promise of Lithium: How an Over-the-Counter Supplement May Prevent and Slow Alzheimer's and Parkinson's disease Thanks to Curiouscast Dila Velazquez – Story Producer Our Presenting Partner is Parkinson Canada. Diagnosed with Parkinson's? You are not alone. Contact presenting partner Parkinson Canada http://www.parkinson.ca/, call the toll free hotline 1-800-565-3000 or on Twitter you can message @ParkinsonCanada. Thanks also to our content and promotional partners  The Michael J. Fox Foundation's Parkinson's IQ + You Events PD Avengers – We are building a global alliance to end Parkinson's. Join us.  World Parkinson Congress 2023 – It's time to make your congress and hotel registrations. Details on the website.  Spotlight YOPD – One of the only Parkinson's organizations dedicated to raising awareness for Young Onset Parkinson's disease and funds for the Cure Parkinson's Trust. 

January 17 marks the 81st anniversary of the birth of one of the greatest Parkinson's advocates of all time, Muhammad Ali. In this episode, we learn more about the champ's journey from his eldest daughter Maryum “May May” Ali – the stigma her father dealt with after his diagnosis, when she first noticed changes in her dad, struggles with speaking and medication, and how he improved his quality of life.  In addition to exploring Ali's Parkinson's legacy, Dr. Michael S. Okun, the head of neurology for the University of Florida Norman Fixel Institute for Neurological Diseases, sheds light on Ali's PD diagnosis. Okun and two other neurologists, the final three neurologists to treat Ali over the course of many years, published an article in October 2022 to clear up misinformation about his diagnosis. Ali was a young onset Parkinson's disease patient that responds to Levodopa which is different if his Parkinson's onset due to his boxing career and punches to the head.   EMAIL Larry and Rebecca: ParkinsonsPod@curiouscast.ca Have questions, comments, or a story idea?  We would love you to click here and leave a message https://www.speakpipe.com/WhenLifeGivesYouParkinsons Follow us, Larry & Rebecca Gifford  Twitter: @ParkinsonsPod Facebook: Facebook.com/ParkinsonsPod Instagram: @parkinsonspod KEY LINKS  Maryum “May May” Ali - website RESOURCES Muhammad Ali and Young-Onset Idiopathic Parkinson Disease—The Missing Evidence Thanks to Curiouscast Dila Velazquez – Story Producer Our Presenting Partner is Parkinson Canada. Diagnosed with Parkinson's? You are not alone. Contact presenting partner Parkinson Canada http://www.parkinson.ca/, call the toll free hotline 1-800-565-3000 or on Twitter you can message @ParkinsonCanada. Thanks also to our content and promotional partners  The Michael J. Fox Foundation's Parkinson's IQ + You Events PD Avengers – We are building a global alliance to end Parkinson's. Join us.  World Parkinson Congress 2023 – It's time to make your congress and hotel registrations. Details on the website.  Spotlight YOPD – One of the only Parkinson's organizations dedicated to raising awareness for Young Onset Parkinson's disease and funds for the Cure Parkinson's Trust. 

When John O'Leary was a nine-year-old boy, he was burned on 100% of his body. He was in his garage playing with matches and gasoline—just like he'd had seen the older boys on his block do. A fire exploded, consuming the garage, sending him flying back against the wall and turning his whole world upside down. He talks with Larry & Rebecca about how he was given 1% chance to live. Now, 36-years later, John is living an inspired life. He has two national best-selling books “On Fire” and “In Awe.” he's a podcast host, an in-demand international speaker and is someone who intimately understands the impact that Parkinson's can have on a family. Email Larry and Rebecca: ParkinsonsPod@curiouscast.ca Have questions, comments, or a story idea? We would love you to click here and leave a message  https://www.speakpipe.com/WhenLifeGivesYouParkinsons Follow us, Larry & Rebecca Gifford  Twitter: @ParkinsonsPod Facebook: Facebook.com/ParkinsonsPod Instagram: @parkinsonspod KEY LINKS John O'Leary Website www.JohnOLearyInspires.com Live Inspired Podcast https://johnolearyinspires.com/podcast/ ·        Episode featuring Larry & Rebecca Gifford and When Life Gives You Parkinson's Books ·        On Fire: The 7 Choices to Ignite a Radically Inspired Life ·        In Awe: Rediscover our childlike wonder + unleash inspiration, meaning and joy. Facebook @JohnOLearyRisingAbove Instagram @joholeary.inspires Linked In @John-O-Leary-08b2805 Twitter @JOLearyInspires Thanks to Curiouscast Dila Velazquez – Story Producer Greg Schott – Sound Design Our Presenting Partner is Parkinson Canada. Diagnosed with Parkinson's? You are not alone. Contact presenting partner Parkinson Canada http://www.parkinson.ca/, call the toll free hotline 1-800-565-3000 or on Twitter you can message @ParkinsonCanada. Thanks also to our content and promotional partners The Michael J. Fox Foundation's Parkinson's IQ + You Events PD Avengers – We are building a global alliance to end Parkinson's. Join us. World Parkinson Congress 2023 – It's time to make your congress and hotel registrations. Details on the website.  Spotlight YOPD – One of the only Parkinson's organizations dedicated to raising awareness for Young Onset Parkinson's disease and funds for the Cure Parkinson's Trust.  

Kat Hill and Nancy Peate are the authors of Being Well with a Chronic Illness: A Guide to Joy and Resilience with Your Diagnosis. In their book they offer wisdom, language, research-supported guidance and personal stories to help people with Parkinson's and other chronic conditions navigate their wellness journey. In this episode, Rebecca talks with the authors — who also happen to be good friends — about their own experiences with Parkinson's and how they have cultivated tools to find joy and resilience. Larry and Rebecca also discuss and offer their reactions to the book. EMAIL Larry and Rebecca: ParkinsonsPod@curiouscast.ca Have questions, comments, or a story idea? We would love you to click here and leave a message https://www.speakpipe.com/WhenLifeGivesYouParkinsons Follow us, Larry & Rebecca Gifford  Twitter: @ParkinsonsPod Facebook: Facebook.com/ParkinsonsPod Instagram: @parkinsonspod KEY LINKS  Being Well with Chronic Illness: A Guide to Joy & Resilience with Your Diagnosis by Kat Kill and Nancy Peate (Paperback and e-Book) Penguin Random House United States US$18.00 Canada C$23.00 Australia A$32.99 WHSmith (UK) United Kingdom £15.63 PD Lemonade – Kat Hill's podcast VIDEO: Advocacy Pyramid ARTICLE: Tom Isaac's Advocacy Pyramid explained from Grand Challenges 2014 Women's Parkinson's Project Thanks to  Dila Velazquez – Story Producer Greg Schott – Sound Design Our Presenting Partner is Parkinson Canada. Diagnosed with Parkinson's? You are not alone. Contact presenting partner Parkinson Canada http://www.parkinson.ca/, call the toll free hotline 1-800-565-3000 or on Twitter you can message @ParkinsonCanada. Thanks also to our content and promotional partners  The Michael J. Fox Foundation Parkinson's Podcast hosted by Larry Gifford  PD Avengers – We are building a global alliance to end Parkinson's. Join us.  World Parkinson Congress 2023 – It's time to make your congress and hotel registrations. Details on the website.  Spotlight YOPD – One of the only Parkinson's organizations dedicated to raising awareness for Young Onset Parkinson's disease and funds for the Cure Parkinson's Trust. 

Geoff Constable is a PD Avenger and an Ambassador for the World Parkinson Congress 2023 in Barcelona. We met at the last WPC2019 in Kyoto. Like many of us with YOPD, Geoff's diagnosis was delayed six years as doctors tried to figure out root issue of his symptoms. In 2008, at the age of 50, he finally was able to put a name to the issues he had, Parkinson's disease. Geoff spent his teen years sleeping on friends couches and sometimes living on the street. He earned a degree in Naval Architecture and designed 16 Ships for the Royal Australian Navy and spent countless hours battle testing the ships in extreme conditions.  At 44-years old he talked to his doctor about onsetting symptoms. It took six years to diagnose him with Young Onset Parkinson's. He was happy to have a name for it, but bummed because there was no cause, no cure, and no standard disease path.  Listen to how Geoff took his diagnosis of Parkinson's and discovered his own superpowers on how to incorporate and accept it. Using his own body as vessel, he put himself through battle testing and discovered he was capable of far more than he or his doctors believed possible.  EMAIL Larry and Rebecca: ParkinsonsPod@curiouscast.ca Have questions, comments, or a story idea? We would love you to click here and leave a message https://www.speakpipe.com/WhenLifeGivesYouParkinsons Follow us, Larry & Rebecca Gifford  Twitter: @ParkinsonsPod Facebook: Facebook.com/ParkinsonsPod Instagram: @parkinsonspod KEY LINKS  WPC2023 Registration and Hotel Geoff Constable's blog VIDEO: Geoff Constable's 2022 Moomba performance Thanks to  Dila Velazquez – Story Producer Greg Schott – Sound Design   Our Promotional Partners include:  Diagnosed with Parkinson's? You are not alone. Contact presenting partner Parkinson Canada http://www.parkinson.ca/, call the toll free hotline 1-800-565-3000 or on Twitter you can message @ParkinsonCanada. Thanks also to our content and promotional partners  The Michael J. Fox Foundation Parkinson's Podcast hosted by Larry Gifford as featured in the MJFF2021 Year in Review.  PD Avengers – We are building a global alliance to end Parkinson's. Join us.  World Parkinson Congress 2023 – It's time to make your congress and hotel registrations. Details on the website.  Spotlight YOPD – One of the only Parkinson's organizations dedicated to raising awareness for Young Onset Parkinson's disease and funds for the Cure Parkinson's Trust. 

This is a breakthrough, breaking news episode featuring Professor Perdita Barren, University of Manchester and Joy Milne, the woman who can smell Parkinson's. Today. their latest research paper was published at 12:01am (BST) September 7, 2022. This research has led to a three-minute non-invasive test to determine a positive or negative Parkinson's diagnosis. Clinical Research will begin within two years at University of Manchester and has the potential to be approved as a diagnostic tool for neurologists before the end of the decade. LISTEN TO JOY MILNE in previous episodes June 05, 2019                The Woman Who Can Smell Parkinson's | World Parkinson Congress | Kyoto October 20, 2019           The Smell of Parkinson's EMAIL Larry and Rebecca: ParkinsonsPod@curiouscast.ca Have questions, comments, or a story idea? We would love you to click here and leave a message  https://www.speakpipe.com/WhenLifeGivesYouParkinsons Follow us, Larry & Rebecca Gifford  Twitter: @ParkinsonsPod Facebook: Facebook.com/ParkinsonsPod Instagram: @parkinsonspod Thanks to Dila Velazquez – Story Producer Greg Schott – Sound Design Our Promotional Partners include:  Diagnosed with Parkinson's? You are not alone. Contact presenting partner Parkinson Canada http://www.parkinson.ca/, call the toll free hotline 1-800-565-3000 or on Twitter you can message @ParkinsonCanada. Thanks also to our content and promotional partners The Michael J. Fox Foundation Parkinson's Podcast hosted by Larry Gifford as featured in the MJFF2021 Year in Review. PD Avengers – We are building a global alliance to end Parkinson's. Join us. World Parkinson Congress 2023 – It's time to start thinking about making your plans to join us for #WPC2023 in Barcelona, Spain for the sixth triennial congress. Spotlight YOPD – The only Parkinson's organization dedicated to raising awareness for Young Onset Parkinson's disease and funds for the Cure Parkinson's Trust.  

Ever worked with a client with PD who had low blood pressure?  Maybe they showed up with BP that surprised you. Maybe they felt symptoms and maybe they didn't. Often their medical team has trouble managing their blood pressure because it can be affected by so many things and is a moving target. In today's show we share a case example as well as tangible steps and strategies for managing low BP in your clients with PD so they stop getting passed off from provider to provider to solve it. Top strategies from a talk by Horacio Kaufmann, MD from World Parkinson Congress 2016: Have your client drink 500 ml / 16.9 oz of water in the moment (add electrolytes if applicable) Put an abdominal binder low and tight on their abdomen Exercise: try boxing, upper extremity exercise with light weights or resistance bands, arm bike, recumbent bike Once stabilized be sure to work with the client in multiple positions to help their body accommodate (use clinical judgment based on your client when or if this is appropriate)   PD meds articles from PFT meeting notes: https://www.mayoclinicproceedings.org/action/showPdf?pii=S0025-6196%2820%2930152-X   https://www.mayoclinicproceedings.org/action/showPdf?pii=S0025-6196%2811%2965259-2   “Diagnosis and treatment of orthostatic hypotension” recent publication with Dr. Kaufmann https://pubmed.ncbi.nlm.nih.gov/35841911/   Abdominal binder option: https://www.amazon.com/dp/B005DLL0CS/ref=cm_sw_r_api_i_FWAV1V9Z6EE8SV2CPK5A_0

Larry has spent more than 30 years in radio as a news and sports anchor/reporter, program director, and consultant. Gifford hosts the podcast “When Life Gives You Parkinson's” which details his journey with the disease as a guy in his mid-40's with a family and a career. He was diagnosed with Young Onset Parkinson's Disease in August 2017. The show was named “Best Podcast” by RTDNA West Region in 2020 and among the “Best of 2018” by Apple Podcasts. Gifford serves on boards for the CKNW Kids' Fund, Pacific Parkinson's Research Institute, and the Michael J Fox Foundation Patient Council. He is also has been named an Ambassador for the 2022 World Parkinson Congress in Barcelona, Spain. PD Avengers https://www.pdavengers.com/larry-gifford-bio Larry's Social Media links: https://twitter.com/Giffordtweet https://www.instagram.com/larrygifford1/?hl=en https://www.linkedin.com/in/larrygifford/ Learn more about your ad choices. Visit megaphone.fm/adchoices

Larry has spent more than 30 years in radio as a news and sports anchor/reporter, program director, and consultant.Gifford hosts the podcast “When Life Gives You Parkinson's” which details his journey with the disease as a guy in his mid-40's with a family and a career. He was diagnosed with Young Onset Parkinson's Disease in August 2017. The show was named “Best Podcast” by RTDNA West Region in 2020 and among the “Best of 2018” by Apple Podcasts.Gifford serves on boards for the CKNW Kids' Fund, Pacific Parkinson's Research Institute, and the Michael J Fox Foundation Patient Council. He is also has been named an Ambassador for the 2022 World Parkinson Congress in Barcelona, Spain.PD Avengershttps://www.pdavengers.com/larry-gifford-bioLarry's Social Media links:https://twitter.com/Giffordtweethttps://www.instagram.com/larrygifford1/?hl=enhttps://www.linkedin.com/in/larrygifford/ Learn more about your ad choices. Visit megaphone.fm/adchoicesSee omnystudio.com/listener for privacy information.

Larry & Rebecca Gifford highlight two Canadians with Parkinson's who are sparking awareness, raising money and building community by riding their bicycles across every Canadian Province over the next three months.  Jim Redmond and Steve Iseman take a break from pedaling to sit down with Larry at picnic table outside their RV on Day two of the journey when they stopped at the Capilano River RV Park in West Vancouver.  Thank you for listening. Add your voice to the show and leave a message for us here; https://www.speakpipe.com/WhenLifeGivesYouParkinsons Follow us, Larry & Rebecca Gifford  Twitter: @ParkinsonsPod Facebook: Facebook.com/ParkinsonsPod Instagram: @parkinsonspod Thank you to the following people and organizations featured in this episode: Jim Redmond  - LISTEN to Jim's episodes from Season One  Parkinson's Doesn't Have to Be a Career Killer. Hope, Fear, Frustration and Levadopa Steve Iseman    Mike Loghrin Darlene Richards-Loghrin WANDA (The RV) Diagnosed with Parkinson's? You are not alone. Contact presenting partner Parkinson Canada http://www.parkinson.ca/, call the toll free hotline 1-800-565-3000 or on Twitter you can message @ParkinsonCanada. Here is a link to Parkinson Canada's “Together: No Matter What” campaign Thanks also to our content and promotional partners The Michael J. Fox Foundation Parkinson's Podcast hosted by Larry Gifford Spotlight YOPD – The only Parkinson's organization dedicated to raising awareness for Young Onset Parkinson's disease and funds for the Cure Parkinson's Trust.   PD Avengers –  We are building a global alliance to end Parkinson's. Join us. World Parkinson Congress 2023 –Make plans to join us for #WPC2023 in Barcelona, Spain. Credits Dila Velazquez – Story Producer Greg Schott – Sound Design See omnystudio.com/listener for privacy information.

RePost of Thursday (4/14/22 show at 6:00 EST on radioparkies.com we have two very special people to the Parkinson's community, Karl and Angela Robb!   They share their amazing journey from meeting in an America on-line chatroom through how they stay strong dealing with PD for over 30 years.   This is a fun, inspiring interview, check it out, you'll enjoy.   About Karl Karl Robb has had Young Onset Parkinson's disease (PD) for over thirty years. With symptoms since he was seventeen years old, Karl was diagnosed at the age of twenty-three. Now fifty-five, he is a Parkinson's disease advocate, entrepreneur, inventor, Reiki Master, and author of two books (A Soft Voice in a Noisy World: A Guide to Dealing and Healing with Parkinson's Disease and Dealing and Healing with Parkinson's Disease and Other Health Conditions: A Workbook for Body, Mind, and Spirit) with his wife and carepartner, Angela Robb. He has blogged for thirteen years on his website, ASoftVoice.com. He is a Community Team Member to ParkinsonsDisease.net. Karl is a board member of both the Parkinson Voice Project and Parkinson Social Network.   About Angela Angela Robb is Karl's wife of 25 years, co-editor at ASoftVoice.com, Community Team Member at ParkinsonsDisease.net, and a Reiki Master. Angela has advocated for caregiver issues by sharing her experiences at various regional and national Parkinson's conferences, writing for the Every Victory Counts manual from the Davis Phinney Foundation, and presenting at the World Parkinson Congress. In 2015, Angela was honored at The White House as a Champion of Change in Parkinson's Disease.

This is part one of three of a mini-series of episodes we are calling “Down Under.” Host Larry Gifford gets you ready for World Parkinson's Day. Learn about the new international symbol for Parkinson's disease named “THE SPARK” and how you can use it.  Where to watch the world premiere of the new documentary “The Long Road to Hope: Ending Parkinson's Disease.” The Parkinson Unity Walk in Central Park in New York City is going to take place April 23. IF you can't make it, you can still participate, we'll tell you how.   The featured guest is Founder of PD Warrior and the Insight into Parkinson's virtual conference Melissa McConaghy, FACP. Melissa takes us behind the curtains of PD Warrior and gets us ready for Insight into Parkinson's Conference. We discuss stigma, self care, and neuro plasticity. Thank you for listening. EMAIL US: ParkinsonsPod@CuriousCast.ca   Have questions for Larry & Rebecca?  Want to share how your conversations go with your partner? We would love you to click and call us here.   https://www.speakpipe.com/WhenLifeGivesYouParkinsons Follow us, Larry & Rebecca Gifford  Twitter: @ParkinsonsPod Facebook: Facebook.com/ParkinsonsPod Instagram: @parkinsonspod KEY LINKS FOR THIS EPISODE Documentary: The Long Road to Hope | Ending Parkinson's Disease The Spark     www.WorldParkinsonsDay.com PD Warrior   www.PDWarrior.com Insight into Parkinson's www.PDWarrior.com/insight-into-PD Unity Walk – www.unitywalk.com Mediflix – www.mediflix.com Thanks to Dila Velazquez – Story Producer Greg Schott – Sound Design Our Promotional Partners include:   Diagnosed with Parkinson's? You are not alone. Contact presenting partner Parkinson Canada http://www.parkinson.ca/, call the toll free hotline 1-800-565-3000 or on Twitter you can message @ParkinsonCanada. Thanks also to our content and promotional partners The Michael J. Fox Foundation Parkinson's Podcast hosted by Larry Gifford as featured in the MJFF2021 Year in Review. PD Avengers –  We are building a global alliance to end Parkinson's. Join us. World Parkinson Congress 2023 – It's time to start thinking about making your plans to join us for #WPC2023 in Barcelona, Spain for the sixth triennial congress. Spotlight YOPD – The only Parkinson's organization dedicated to raising awareness for Young Onset Parkinson's disease and funds for the Cure Parkinson's Trust.       See omnystudio.com/listener for privacy information.

Thursday (2/10/22) at 6:00 EST on radioparkies.com we spoke with Becca Miller PhD. Becca talks about Parkinson's medication and hospital stays, and the way to fix this problem. She shares her personal story plus much more.    She co-authored the book, Deprescribing in Psychiatry, published by Oxford University Press. Becca was diagnosed with Young Onset Parkinson's Disease, at age 39 when her daughter was 9 months old, and after living with symptoms undiagnosed for 10 years prior. She has served as a delegate and spoken on YOPD and parenting at the World Parkinson Congress in Portland, OR and Kyoto, Japan.   Rebecca (Becca) Miller, Ph.D., is a licensed clinical psychologist and Associate Professor at the Yale School of Medicine, Department of Psychiatry, New Haven CT, USA. She received her MA and PhD in Clinical Psychology from Long Island University, Brooklyn, and her BA from Barnard College.  

Matthew Farrer, Ph.D., along with special guest host Gaynor Edwards  joined us on radioparkies.com (Thursday 02.03.22) at 6:00 EST. Dr. Farrer, internationally recognized for his work on the genetics of Parkinson's disease, currently works at the University of Florida where he is a professor of Neurology. He is a medical and populist geneticist by training and a neurologist by design. This interview covers why he focused on Parkinson's (specifically YOPD), alpha synuclein and much more! Matt and Gaynor are working together with the World Parkinson Congress - along with other advocates and researchers to further information and research into young onset PD. They hope to have a significant presence at Barcelona in 2023.

Karl and Angela Robb - lessons from living with Parkinson's for over 30 years. Join me as I chat with Karl and Angela Robb as they share their experience of living successfully with Parkinson's disease for over 30 years.   They are truly inspirational! Karl Robb has had Young Onset Parkinson's disease (PD) for over thirty years. With symptoms since he was seventeen years old, Karl was diagnosed at the age of twenty-three. Now fifty-four, he is a Parkinson's disease advocate, entrepreneur, inventor, Reiki Master, and author of two books (A Soft Voice in a Noisy World: A Guide to Dealing and Healing with Parkinson's Disease and Dealing and Healing with Parkinson's Disease and Other Health Conditions: A Workbook for Body, Mind, and Spirit) with his wife and care partner, Angela Robb. He has blogged for twelve years on his website, ASoftVoice.com. He is a Community Team Member to ParkinsonsDisease.net. Karl is a board member of both the Parkinson Voice Project and Parkinson Social Network.Angela Robb is Karl's wife of 24 years, co-editor at ASoftVoice.com, Community Team Member at ParkinsonsDisease.net, and a Reiki Master. Angela has advocated for caregiver issues by sharing her experiences at various regional and national Parkinson's conferences, writing for the Every Victory Counts manual from the Davis Phinney Foundation, and presenting at the World Parkinson Congress. In 2015, Angela was honored at The White House as a Champion of Change in Parkinson's Disease. 

Larry & Rebecca Gifford dive deep in to deep brain stimulation (DBS). We learn about the innovative technology used for DBS from Dr. Alfonso Fasano, the chair of Neuromodulation and multi-disciplinary care at the University of Toronto and University Health Network. Sonia Soriano-Espert from Valencia, Spain, through translator and friend Sabela Avion, shares her experience of having DBS surgery conducted by a robot. This interview first aired on ODNA PK radio in Spain. The hosts are PD Avengers and members of Con P de Parkinson, a growing group of women who speak Spanish and have PD. In part-one of this two-part arc, Heather Kennedy and Becca Miller were preparing for DBS Surgery. In part two, both women share their surgery experience. The share how their children responded and how they feel about DBS, now that they have had it.  Thank you for listening.  Send us songs you would want to listen to while undergoing DBS.   EMAIL US: ParkinsonsPod@CuriousCast.ca  Or add the songs you'd want to listen to during DBS to the WLGYP DBS PLAYLIST on Spotify Have questions for Larry & Rebecca? Do you want to share your DBS story or have an idea for an upcoming podcast? Want to share how the podcast has helped you? Click the link on your laptop or desktop and leave us a voice message.https://www.speakpipe.com/WhenLifeGivesYouParkinsons Follow us, Larry & Rebecca Gifford  Twitter: @ParkinsonsPod Facebook: Facebook.com/ParkinsonsPod Instagram: @parkinsonspod Thank you to the following people and organizations featured in this episode: Alfonso Fasano, MD, PhD, Chair in Neuromodulation and Multi-Disciplinary Care, Neurologist, Co-Director of the Surgical Program, Movement Disorders Centre, Toronto Western Hospital.   Heather Kennedy, PwP, WPC2023 Ambassador a.k.a. Kathleen Kiddo Becca Miller, PhD, PwP, Michael J. Fox Foundation Patient Council, Assistant Professor of Psychiatry at Yale University.  Michael S. Okun, MDUniversity of Florida Kelly D. Foote, MD University of Florida Ted X Talk about DBS from Michael Okun, MD and Kelly Foote, MD (2012) Sonia Soriano-Espert, PwP, Valencia, Spain. Con P de Parkinson Sabela Avion, PwP, NYC & Spain. Founder of Parkinsonic. Con P de Parkinson Special music acknowledgements. Thank you to Justin Timberlake. We played 12 seconds of “Cant Stop The Feeling!” Credit goes to the song writers Timberlake, Max Martin, and Johan Schuster. Timberlake and Martin are also credited as producers along with Shellback.   Thank you to Taylor Swift. We played :17 of “Shake it Off.” The song was written by Swift, Max Martin and Shellback. It was released on Big Machine records in 2014. A special thanks to Dorothy and Scarecrow. “If I Only Had a Brain,” is heard for 31 seconds. The song is featured in the 1938 film The Wizard of Oz. It is written by Harold Arlen and Yip Harburg. Ray Bolger and Judy Garland sang it when their characters first met along the yellow brick road. The film is still under copyright by Warner Pictures. Our Promotional Partners include:   Diagnosed with Parkinson's? You are not alone. Contact presenting partner Parkinson Canada http://www.parkinson.ca/, call the toll free hotline 1-800-565-3000 or on Twitter you can message @ParkinsonCanada. Here is a link to Parkinson Canada's “Together: No Matter What” campaign Thanks also to our content and promotional partners The Michael J. Fox Foundation Parkinson's Podcast hosted by Larry Gifford Spotlight YOPD – The only Parkinson's organization dedicated to raising awareness for Young Onset Parkinson's disease and funds for the Cure Parkinson's Trust.   PD Avengers –  We are building a global alliance to end Parkinson's. Join us. World Parkinson Congress 2023 –Make plans to join us for #WPC2023 in Barcelona, Spain. Credits Dila Velazquez – Story Producer Greg Schott – Sound Design See omnystudio.com/listener for privacy information.

Larry & Rebecca Gifford dive deep in to deep brain stimulation (DBS). We challenge the Neuroscience perception that the brain is everything we know and do, and everything we are. We believe, more than just a brain that makes us human, empathetic, and real.  This first part prepares you for the surgery. We call it DBS 101. We will explain terminology detail the lead up to the surgery, and tell you why it matters where the lead wires are placed in your brain. We explore our personal hesitations surrounding DBS. And we revisit friends of the podcast, Heather Kennedy and Becca Miller, both of whom are recovering from recent DBS surgeries.  Thank you for listening. Add your voice to the show and leave a message for us here; https://www.speakpipe.com/WhenLifeGivesYouParkinsons   Follow us, Larry & Rebecca Gifford  Twitter: @ParkinsonsPod Facebook: Facebook.com/ParkinsonsPod Instagram: @parkinsonspod   Thank you to the following people and organizations featured in this episode: Heather Kennedy, PwP, WPC2023 Ambassador a.k.a. Kathleen Kiddo Becca Miller, PhD, PwP, Michael J. Fox Foundation Patient Council, Assistant Professor of Psychiatry at Yale University.  Michael S. Okun, MD University of Florida Kelly D. Foote, MD University of Florida Ted X Talk about DBS from Michael Okun, MD and Kelly Foote, MD (2012) Diagnosed with Parkinson's? You are not alone. Contact presenting partner Parkinson Canada http://www.parkinson.ca/, call the toll free hotline 1-800-565-3000 or on Twitter you can message @ParkinsonCanada. Here is a link to Parkinson Canada's “Together: No Matter What” campaign Thanks also to our content and promotional partners The Michael J. Fox Foundation Parkinson's Podcast hosted by Larry Gifford Spotlight YOPD – The only Parkinson's organization dedicated to raising awareness for Young Onset Parkinson's disease and funds for the Cure Parkinson's Trust.   PD Avengers –  We are building a global alliance to end Parkinson's. Join us. World Parkinson Congress 2023 –Make plans to join us for #WPC2023 in Barcelona, Spain. Credits Dila Velazquez – Story Producer Greg Schott – Sound Design See omnystudio.com/listener for privacy information.

Brought together by the need to stay connected during the pandemic this group of 6 women, all with Parkinson's disease, share their experience. An international group, some of whom I met in Kyoto, Japan at the World Parkinson Congress. This is the first in a series with these lovely ladies.

The first three episodes of Season 4 of When Life Gives You Parkinson's go deep inside the brain. It has been five years since the United Nations recognized one BILLION people or one in six person's alive today on the planet suffers from a neurological disorder, from Alzheimer and Parkinson disease, strokes, multiple sclerosis, and epilepsy to migraine, brain injuries and neuro-infections. Each year, nearly 7 million dying from neurological issues each year. Every two-and-half minutes, another person dies from Parkinson's disease. What's happening to us? The Brain is Under Siege. In the kickoff episode of Season 4, Howard Weiner MD, a Harvard professor and Co-Director of the Ann Romney Center at Brigham and Women's hospital shares his theories. Weiner released a book in October 2021 called, “The Brain Under Siege; Solving the Mystery of Brain Disease, and How Scientists are Following the Clues to a Cure.”  He suggests the key to solving this diseases is to treat them like crime scenes. Learn along with Larry as Dr. Weiner details Alpha Synuclean, Microbiome, the Brain Gut Connection, and the importance of volunteering for research. He also explains how many of these brain issues have more in common that we first thought.   Thank you for listening. Add your voice to the show and leave a message for us here; https://www.speakpipe.com/WhenLifeGivesYouParkinsons   Follow us, Larry & Rebecca Gifford  Twitter: @ParkinsonsPod Facebook: Facebook.com/ParkinsonsPod Instagram: @parkinsonspod   Thank you to the following people and organizations featured in this episode: Dr. Howard Weiner, Harvard professor, Co-Director of The Ann Romney Center at Brigham and Women's Hospital and author of “The Brain Under Siege.” Dr. Ray Dorsey, co-author “Ending Parkinson's Disease.” Dr. Gregory Petsko – Ted Talk Dr. Silke Cresswell – Studies role of Gut Biome Ted Talks Djavad Mowafaghian Centre for Brain Health Diagnosed with Parkinson's? You are not alone. Contact presenting partner Parkinson Canada http://www.parkinson.ca/, call the toll free hotline 1-800-565-3000 or on Twitter you can message @ParkinsonCanada.   Here is a link to Parkinson Canada's “Together: No Matter What” campaign   Thanks also to our content and promotional partners The Michael J. Fox Foundation Parkinson's Podcast hosted by Larry Gifford Spotlight YOPD – The only Parkinson's organization dedicated to raising awareness for Young Onset Parkinson's disease and funds for the Cure Parkinson's Trust.   PD Avengers –  We are building a global alliance to end Parkinson's. Join us. World Parkinson Congress 2023 –Make plans to join us for #WPC2023 in Barcelona, Spain.   Credits Dila Velazquez – Story Producer Greg Schott – Sound Design See omnystudio.com/listener for privacy information.

In this week's episode of the 7Bee Podcast, Editor Caroline Lobsinger talks to  A.C. Woolnough about going skydiving for his 71st birthday. For the former Sandpoint High School principal  jumping out of a plane in mid-September accomplished several things. First, it was a chance to do something with his son and several of his grandsons. Second, it was a chance to  do something he loved, something he hadn't done for 50 years. And third, it was a chance to raise funds to help send young researchers to the 2023 World Parkinson Congress in Barcelona, Spain, to which he was selected as an ambassador.

RePost of Thursday 10/7/21 show at 6:00 EST on radioparkies.com we have Parkinson's advocate Brian Reedy.Tune in and hear a heartfelt discussion about Grief and Parkinson's, grief, and the loss of a loved one and much more. About Brian:Diagnosed 12 years ago, Brian is deeply involved as an ambassador for the Davis Phinney Foundation, with the Michael J Fox Foundation Policy Forum, The Parkinson's Alliance as well as the World Parkinson Congress. Listen in to hear his story. -With Heather Kennedy like/rate/follow our podcast at: https://podcasts.apple.com/us/podcast/2-mikes-parkinsons-podcast/id1537782063 https://twomikespdpodcast.podbean.com/ Listen to all radioparkie shows at: https://www.mixcloud.com/RadioParkies_usa/

DBS SERIES on radioparkies.com   Aired LIVE on Thursday 7/29/21 6:00 EST on radioparkies.com, Rune Vethe served as an ambassador for the 5th World Parkinson Congress. He was diagnosed with Parkinson's disease in 2009 and has channeled his professional skills in teaching and physical education into being a Rock Steady Boxing Coach and Parkinson's advocate in Norway.   In this interview we talk with Rune about DBS and how it helped him. We discuss how he's currently off meds, non-motor issues, how Reconciliation means more to him than adapting, balance before and after DBS, communication and why he likes the New Orleans Saints   Catch all radioparkies shows on https://www.mixcloud.com/radioparkieswebradio/stream/ Catch all of my shows on https://twomikespdpodcast.podbean.com/ Interested in telling your Parkinson's story? Visit our website at https://www.parkinsonspodcast.net/ and drop us an email

DBS SERIES on radioparkies.com   Aired LIVE on Thursday 7/29/21 6:00 EST on radioparkies.com, Rune Vethe served as an ambassador for the 5th World Parkinson Congress. He was diagnosed with Parkinson's disease in 2009 and has channeled his professional skills in teaching and physical education into being a Rock Steady Boxing Coach and Parkinson's advocate in Norway.   In this interview we talk with Rune about DBS and how it helped him. We discuss how he's currently off meds, non-motor issues, how Reconciliation means more to him than adapting, balance before and after DBS, communication and why he likes the New Orleans Saints   Catch all radioparkies shows on https://www.mixcloud.com/radioparkieswebradio/stream/ Catch all of my shows on https://twomikespdpodcast.podbean.com/ Interested in telling your Parkinson's story? Visit our website at https://www.parkinsonspodcast.net/ and drop us an email

We missed a few weeks of the podcast and I wanted to explain why. Turns out I can't still do it all. I'm having to prioritize more and  more on where I put my focus. This time, the podcast got short shrift. But, I figured if anyone would be understanding it'll be my pod peeps. There are two more episodes of Season 3 of When Life Gives You Parkinson's which will be released sometime this Summer. One on Paraquat and other toxic chemicals and one on DBS: Deep Brain Stimulation. After those episodes drop, Rebecca and I will be on a hiatus from the podcast until sometime in 2022. Breaking News. Big Announcement dropped on June 15 that the World Parkinson Congress 2022 in Barcelona is postponed one year to July 4-7. It will still be in Barcelona. See omnystudio.com/listener for privacy information.

This episode of When Life Gives You Parkinson’s features former NBA star Brian Grant who was diagnosed with Parkinson’s disease (PD) in 2008. He spent 12 years battling for rebounds and putting points on the board playing professional basketball and the last 13 years battling Parkinson’s and putting points on the board as a PD advocate.   “You know, when I go onto court and go up against somebody who was a big name, I’d grit my teeth to try to be an animal out there,” Grant shared. But he admits, YOPD is a different beast than pro basketball, “You can do that at Parkinson's, but it's just going to sit there and say, keep gritting your teeth and when you get done gritting your teeth…  I'm going to have your cheekbone.” From denial and depression to acupuncture and advocacy, Brian Grant’s PD story is a unique but relatable journey for many suffering and living with the disease. His honesty and vulnerability are on display as he, like many of us, try to come to terms with a disease determined to do whatever it pleases, whenever it wants to.  You can find out more about the Brian Grant Foundation at BrianGrant.org. His book Rebound: Soaring in the NBA, Battling Parkinson’s, and Finding What Really Matters is available everywhere you buy books… Thank you for listening. Add your voice to the show and leave a message for us here; https://www.speakpipe.com/WhenLifeGivesYouParkinsons Follow us, Larry & Rebecca Gifford  Twitter: @ParkinsonsPod Facebook: Facebook.com/ParkinsonsPod Instagram: @parkinsonspod Thank you to the following people featured in this episode:  Diagnosed with Parkinson’s? You are not alone. Contact presenting partner Parkinson Canada http://www.parkinson.ca/, call the toll free hotline 1-800-565-3000 or on Twitter you can message @ParkinsonCanada. Here is a link to Parkinson Canada’s “Together: No Matter What” campaign Thanks also to our content and promotional partners The Michael J. Fox Foundation Parkinson’s Podcast hosted by Larry Gifford Spotlight YOPD – The only Parkinson’s organization dedicated to raising awareness for Young Onset Parkinson’s disease and funds for the Cure Parkinson’s Trust.   PD Avengers - United to end Parkinson’s. Join us. World Parkinson Congress 2022 –Make plans to join us for #WPC2022 in Barcelona, Spain. See omnystudio.com/listener for privacy information.

This episode of When Life Gives You Parkinson’s is all about care partners and caregivers advocating for themselves. We take our jobs very seriously and often put caring for ourselves last on our lists. Our lives and well-beings are affected on nearly every level by our Person with Parkinson’s condition, and we have our own needs, yet we still are often considered predominantly in relationship to them. How do we as care partners, caregivers and Partners in Parkinson’s advocate for equal consideration in and out of our relationships? How do we make sure we have what we need to take care of ourselves, not to mention the time and space to do it? How do we learn to consistently consider our own well-being first? Rebecca takes the lead this episode and talks to three wise and wonderful care partners. First, she speaks frankly about the challenges and lessons that Cherryl Choi and Sheryl Hague have learned as they navigate their life as care partners, mothers and humans. Then she speaks to Leslie Davidson, an award-winning writer and Person with Parkinson’s who also was a care partner and caregiver to her late husband Lincoln, who had Lewy Body Dementia. She tells us what she’s learned by being on both sides of the experience and the role her writing plays in her own advocacy. And, of course, Rebecca and Larry talk about how they move through these waters in their relationship. U-Turn Parkinson’s is Sheryl and Tim Hague’s wellness center in Winnipeg. Find out more about all that Cherryl and Jimmy Choi do at a TheFoxNinja.com. Writer Leslie Davidson’s website. Thank you for listening. Add your voice to the show and leave a message for us here; https://www.speakpipe.com/WhenLifeGivesYouParkinsons   Follow us, Larry & Rebecca Gifford  Twitter: @ParkinsonsPod Facebook: Facebook.com/ParkinsonsPod Instagram: @parkinsonspod Thank you to the following people featured in this episode:   Diagnosed with Parkinson’s? You are not alone. Contact presenting partner Parkinson Canada http://www.parkinson.ca/, call the toll free hotline 1-800-565-3000 or on Twitter you can message @ParkinsonCanada. Here is a link to Parkinson Canada’s “Together: No Matter What” campaign Thanks also to our content and promotional partners The Michael J. Fox Foundation Parkinson’s Podcast hosted by Larry Gifford Spotlight YOPD – The only Parkinson’s organization dedicated to raising awareness for Young Onset Parkinson’s disease and funds for the Cure Parkinson’s Trust.   PD Avengers - United to end Parkinson’s. Join us. World Parkinson Congress 2022 –Make plans to join us for #WPC2022 in Barcelona, Spain. See omnystudio.com/listener for privacy information.

Co-founders Richelle Flanagan and Sri Sripathy join me to discuss the launch of the Women's Parkinson's Project. After meeting at the World Parkinson Congress, we joined together to raise the voices of women in our community. We discuss what it means to be female in the world of chronic illness and how we hope to  empower others to find their voice.

April is Parkinson’s Awareness Month! This episode of When Life Gives You Parkinson’s addresses stigma of Parkinson is in Uganda. You will meet Hannington Kabugo and learn how the passion and resourcefulness of a single advocate can help drive change in the world. Hannington and his two sisters moved with their father out of their home after the village determined his Mom was a witch. They were never to return. He tells us the stories of what happened when he sneaked back to see her. Years later, Hannington realized she was exhibiting all the signs of Parkinson’s. He has established Parkinson’s Si Buko, which means Parkinson’s is not witchcraft or a curse.  Thank you for listening. Add your voice to the show and leave a message for us here; https://www.speakpipe.com/WhenLifeGivesYouParkinsons Follow us, Larry & Rebecca Gifford  Twitter: @ParkinsonsPod Facebook: Facebook.com/ParkinsonsPod Instagram: @parkinsonspod Thank you to the following people featured in this episode: Kabugo Hannington – is the Director of Operations of Parkinson’s Si Buko Uganda Gavin Mogan – is a PwP, living in Texas, and is Executive Director of Parkinson’s Si Buko Uganda  Diagnosed with Parkinson’s? You are not alone. Contact presenting partner Parkinson Canada http://www.parkinson.ca/, call the toll free hotline 1-800-565-3000 or on Twitter you can message @ParkinsonCanada. Here is a link to Parkinson Canada’s “Together: No Matter What” campaign Thanks also to our content and promotional partners The Michael J. Fox Foundation Parkinson’s Podcast hosted by Larry Gifford Spotlight YOPD – The only Parkinson’s organization dedicated to raising awareness for Young Onset Parkinson’s disease and funds for the Cure Parkinson’s Trust.   PD Avengers - United to end Parkinson’s. Join us. World Parkinson Congress 2022 –Make plans to join us for #WPC2022 in Barcelona, Spain. See omnystudio.com/listener for privacy information.

April is Parkinson’s Awareness Month! This episode of When Life Gives You Parkinson’s Larry interviews Allan Cole from the PD Wise blog and the author of a new book Counseling Persons with Parkinson’s Disease. Allan, 53, received his diagnosis nearly five years ago. In addition to his advocacy work, he is a father of two teenaged girls, he is coming up on his 30th wedding anniversary and he is a professor and academic dean in Steve Hicks School of Social Work at the University of Texas at Austin. Halfway through this episode, the host becomes the guest as Allan interviews Larry. The discussions wind their way through work life with PD, family, advocacy, leadership and what gives them hope. Thank you for listening. Add your voice to the show and leave a message for us here; https://www.speakpipe.com/WhenLifeGivesYouParkinsons Follow us, Larry & Rebecca Gifford  Twitter: @ParkinsonsPod Facebook: Facebook.com/ParkinsonsPod Instagram: @parkinsonspod Thank you to the following people featured in this episode: Allan Hugh Cole Blog: PD Wise, Book: Counseling Persons with Parkinson’s Disease Follow Allan on Twitter: @PDWise Allan mentioned an episode of When Life Gives You Parkinson’s when I spoke with colleagues. Here’s a link to “Parkinson’s doesn’t have to be a career killer.” Diagnosed with Parkinson’s? You are not alone. Contact presenting partner Parkinson Canada http://www.parkinson.ca/, call the toll free hotline 1-800-565-3000 or on Twitter you can message @ParkinsonCanada. Here is a link to Parkinson Canada’s “Together: No Matter What” campaign Thanks also to our content and promotional partners The Michael J. Fox Foundation Parkinson’s Podcast hosted by Larry Gifford Spotlight YOPD – The only Parkinson’s organization dedicated to raising awareness for Young Onset Parkinson’s disease and funds for the Cure Parkinson’s Trust.  PD Avengers - United to end Parkinson’s. Join us. World Parkinson Congress 2022 –Make plans to join us for #WPC2022 in Barcelona, Spain. See omnystudio.com/listener for privacy information.

April is Parkinson’s Awareness Month! This episode of When Life Gives You Parkinson’s is about women with Parkinson’s who are diagnosed less often, less accurately and offered treatments that are less effective often because hormonal cycles play a role and it’s a rather unexplored area of the disease. We will hear from three women with Parkinson’s who also experienced pregnancy, giving birth and parenting with PD. All of their experiences were different, but certainly complicated by their Parkinson’s disease. And all three are now advocates for women like them. Thank you for listening. Add your voice to the show and leave a message for us here; https://www.speakpipe.com/WhenLifeGivesYouParkinsons Follow us, Larry & Rebecca Gifford  Twitter: @ParkinsonsPod Facebook: Facebook.com/ParkinsonsPod Instagram: @parkinsonspod Thank you to the following people featured in this episode: Soania Mathur, MD - Sonia was a family physician and pregnant with her first child when she was diagnosed at 27. She is co-founder of PD Avengers, co-chair of The Michael J Fox Patient Council,  on the Board of Directors for the Davis Phinney Foundation, and the medical boards of the Brian Grant Foundation and Parkinson Canada. She and her two daughters have also written two Children’s books on Parkinson’s; My Grandpa’s Shaky Hand and Shaky Hands – A Kids Guide to Parkinson’s Disease. Caitlin Nagy – After denying and hiding her diagnosis for seven years, Caitlin, a 38-year-old mother, is sharing her story of Parkinson’s in Parkinson Canada’s April Awareness Campaign “Together: No Matter What.” Paola Celli - Paola was born in Ecuador and diagnosed at the age of 12. She was married and then moved to Texas where she gave birth to two children.   Diagnosed with Parkinson’s? You are not alone. Contact presenting partner Parkinson Canada http://www.parkinson.ca/, call the toll free hotline 1-800-565-3000 or on Twitter you can message @ParkinsonCanada. Here is a link to Parkinson Canada’s “Together: No Matter What” campaign    Thanks also to our content and promotional partners The Michael J. Fox Foundation Parkinson’s Podcast hosted by Larry Gifford Spotlight YOPD – The only Parkinson’s organization dedicated to raising awareness for Young Onset Parkinson’s disease and funds for the Cure Parkinson’s Trust.  PD Avengers - United to end Parkinson’s. Join us. World Parkinson Congress 2022 –Make plans to join us for #WPC2022 in Barcelona, Spain. Credits Dila Velazquez – Story Producer Rob Johnson  – Sound Design   See omnystudio.com/listener for privacy information.

In this episode of When Life Gives You Parkinson’s, I am the host of a live event with four leading experts in the Parkinson’s world. Together they wrote a book called “Ending Parkinson’s Disease” and launched a red letter campaign to the White House. It’s been one year since the book was released and it has helped to inspired the movement PD Avengers, which I co-founded. What’s new in Parkinson’s? What have they learned? What’s standing in our way of success? Listen as Dr. Ray Dorsey, Dr. Bas Bloem, Dr. Michael Okun, and Dr. Todd Sherer sit down for one on one interviews with me and learn how, no matter where you are in the world, you can help make a difference.   Thank you for listening. Add your voice to the show and leave a message for us here; https://www.speakpipe.com/WhenLifeGivesYouParkinsons Follow us, Larry & Rebecca Gifford  Twitter: @ParkinsonsPod Facebook: Facebook.com/ParkinsonsPod Instagram: @parkinsonspod Thank you to the following people featured in this episode: Dr. Todd Sherer, CEO Michael J Fox Foundation Dr. Michael Okun, Chair and professor of Neurology, University of Florida Dr. Bas Bloem, Prof. Bas Bloem is the medical director of the Department of Neurology at Radboud University Medical Center. Dr. Ray Dorsey, Prof. Department of Neurology , Director of Center for Health and Technology (SMD)     at the University of Rochester   Buy the Ending Parkinson’s Book or Join the Red Letter Campaign www.endingpd.org Diagnosed with Parkinson’s? You are not alone. Contact presenting partner Parkinson Canada http://www.parkinson.ca/, call the toll free hotline 1-800-565-3000 or on Twitter you can message @ParkinsonCanada. Here is a link to the Parkinson’s Canada Preventing Falls Guide.   Thanks also to our content and promotional partners The Michael J. Fox Foundation Parkinson’s Podcast hosted by Larry Gifford Spotlight YOPD – The only Parkinson’s organization dedicated to raising awareness for Young Onset Parkinson’s disease and funds for the Cure Parkinson’s Trust.  PD Avengers - United to end Parkinson’s. Join us. World Parkinson Congress 2022 –Make plans to join us for #WPC2022 in Barcelona, Spain.   Credits Dila Velazquez – Story Producer Greg Schott – Sound Design   See omnystudio.com/listener for privacy information.

In this episode of the Postural Restoration Podcast I sat down with Jennifer Smart, PT, DPT, PRC who practices clinically in Oriental, NC incorporating PRI principles and many other modalities with her patients who have been diagnosed with Parkinson's Disease and those who she believes exhibit "Parkinson's like" symptoms before they are diagnosed. Jennifer discusses the impact that her life story has had on her clinical practice, including many trips across the Atlantic navigating the seas on her small sailboat. These experiences and interacting with a diverse set of mentors and patients have collectively led to her current understanding of neurological flow, perception of time and ground forces all used for human patterned stability. Jennifer earned both a Bachelor's of Science and Doctorate of Physical Therapy Degree and because of the influences of neurological timing and one's position in space whether at sea or on land, her interest in involuntary neurological movement disorders grew. After starting her clinical journey in Oriental, NC Jennifer sailed to Samoa and had the opportunity to work as the head Physical Therapist for the Samoan Olympic team. It was during this experience that she appreciated the influence of pressure and air flow throughout the body while working with an Olympic power lifter. After returning to the U.S. her love for cycling stemmed from her perception of time and her desire to decrease her speed of travel as her body became used to the slow, calculated and predictable movement across open water. Jennifer was introduced to the science of PRI through her cycling interest and a "Bike Fitting" article authored by Faculty Member Lori Thomsen. To this day Jennifer incorporates cycling with numerous clients who have been diagnosed with PD and other autonomic disorders.After her first few courses and clinical experimentation incorporating PRI techniques into her clinical practice she had finally felt that the patterns she had recognized through her own journey were being studied and discussed by someone else. Jennifer completed twelve courses over the span of the next two years and became certified as part of the 2015 PRC Class. Jennifer has extensive training in "LSVT", "PWR", Rock Steady Boxing, and has attended and contributed to numerous Parkinson's organizations, including the World Parkinson Congress. She has used these and various other modalities to incorporate PRI into her daily practice and weekly classes offered to her patients and individuals of all backgrounds experiencing involuntary movement disorders. Jennifer in collaboration with Ron Hruska discusses her upcoming presentations as part of this years 12th Annual Interdisciplinary Integration Symposium "Basal Ganglia Disease - An Interdisciplinary Approach in the Management of Kinesia Paradoxica" alongside Neal Hallinan. You can read more about Jennifer's topics of discussion and this years symposium held on April 22-23rd by visiting our website.

This episode of When Life Gives You Parkinson’s is about exploring Eastern holistic healing modalities as a complement to the pharmaceuticals relied upon by Western Medicine. Parkinson’s touches a global community, so we might as well use all the global tools to address our health and wellness. Sometimes it is a matter of having the courage to try something new. For me, last year, that was acupuncture. I am afraid of needles, but quite enjoyed the pain relief it provide and calming, centering sensation it provided. Practitioners of traditional Eastern medicine stress the importance of finding an energetic balance and energetic awareness. I have never had Reiki. Rebecca experienced it at World Parkinson Congress in Kyoto. We talk to the two Reiki masters who were in the “renewal room” and the impact that they observed Reiki had on people with Parkinson’s and care partners. We also chat with Karl and Angela Robb. Karl has had PD for thirty years. After discovering the benefits of Reiki, they both became Reiki masters and use it to manage life’s challenges. Thank you for listening. Add your voice to the show and leave a message for us here; https://www.speakpipe.com/WhenLifeGivesYouParkinsons Follow us, Larry & Rebecca Gifford  Twitter: @ParkinsonsPod Facebook: Facebook.com/ParkinsonsPod Instagram: @parkinsonspod Thank you to the following people featured in this episode: Muniqui Muhammad and Lena Takahashi www.healinglandreiki.com Karl and Angela Robb www.KarlRobb.com and check out their book A Soft Voice in a Noisy World: A Guide to Dealing and Healing with Parkinson’s Disease Book Diagnosed with Parkinson’s? You are not alone. Contact presenting partner Parkinson Canada http://www.parkinson.ca/, call the toll free hotline 1-800-565-3000 or on Twitter you can message @ParkinsonCanada. Here is a link to the Parkinson’s Canada Preventing Falls Guide.  Thanks also to our content and promotional partners The Michael J. Fox Foundation Parkinson’s Podcast hosted by Larry Gifford Spotlight YOPD – The only Parkinson’s organization dedicated to raising awareness for Young Onset Parkinson’s disease and funds for the Cure Parkinson’s Trust.  PD Avengers - United to end Parkinson’s. Join us. World Parkinson Congress 2022 –Make plans to join us for #WPC2022 in Barcelona, Spain. See omnystudio.com/listener for privacy information.

Hi, it’s Larry. I’m 49 and I have Parkinson’s disease. This episode of When Life Gives You Parkinson’s is about managing falls. It is winter and where we live snow and ice and black ice and freezing rain are all hazards, which increase everyone’s chances of falling. People with Parkinson’s are more prone to slipping and stumbling, skidding and tumbling to the ground. So, we should talk about it. I didn’t consider it a topic I’d need to know much about until I get much older. I was wrong. One reason we're doing this episode is because over the holidays I had four falls.   I am on the mend with help from NeuroFit BC’s Naomi Casiro. Rebecca and I talk with Physiotherapist Nicole Ascera, PhD. She’s a clinical specialist in neurosciences and wrote the Parkinson Canada Guide on Preventing Falls. I also meet the creator of the ACTIVATOR Poles by Urban Poling, Mandy Shintani. These are great tools especially for gait, balance and confidence issues. Through the episode, Rebecca and I realize we have a lot to do to prepare mentally, physically, emotionally and spiritually for the next fall. And the fall after that one. And the one after that one. Thank you for listening. Add your voice to the show and leave a message for us here; https://www.speakpipe.com/WhenLifeGivesYouParkinsons Follow us, Larry & Rebecca Gifford  Twitter: @ParkinsonsPod Facebook: Facebook.com/ParkinsonsPod Instagram: @parkinsonspod Thank you to the following people featured in this episode: Naomi Casiro (Founder/ Registered Physiotherapist) BSc. (Kin), MPT, Certified PWR! https://www.neurofitbc.com/ Nicole Acerra, PhD Nicole Acerra, PhD, is a physiotherapist with a passion for neurological and vestibular rehabilitation. She is one of the authors of the Parkinson Canada’s Preventing Falls Guide Mandy Shintani OT & Gerontologist, Developer ACTIVATOR Poles & Founder Urban Poling Inc. Diagnosed with Parkinson’s? You are not alone. Contact presenting partner Parkinson Canada http://www.parkinson.ca/, call the toll free hotline 1-800-565-3000 or on Twitter you can message @ParkinsonCanada. Here is a link to the Parkinson’s Canada Preventing Falls Guide. Thanks also to our content and promotional partners The Michael J. Fox Foundation Parkinson’s Podcast hosted by Larry Gifford Spotlight YOPD – The only Parkinson’s organization dedicated to raising awareness for Young Onset Parkinson’s disease and funds for the Cure Parkinson’s Trust.  PD Avengers - United to end Parkinson’s. Join us.World Parkinson Congress 2022 –Make plans to join us for #WPC2022 in Barcelona, Spain See omnystudio.com/listener for privacy information.

In this episode of When Life Gives You Parkinson’s, my wife Rebecca and I discover and discuss integrated medicine with Dr. Indu Subramanian. Integrated medicine is where Western and Eastern medicines meet. Activities we all are aware of like yoga, mindfulness, acupuncture and massage are among the activities that fall into integrated medicine. I first met Indu when she interviewed me on a webinar for PMD Alliance in September 2020. Indu is Canadian, having been born and raised in Ontario, she now lives in LA. She runs the Center of Excellence for Parkinson’s at the West Los Angeles Veteran’s Hospital and is a neurologist on staff at UCLA hospital. She’s also certified in Integrated Medicine, has more than 200 hours of yoga training and loves to explore unconventional and non-pharma treatments to improve life for people with PD. Her study on loneliness during the pandemic causing an increase of PD symptoms was widely reported on in medical journals, newspapers and popular magazines alike. She is approachable, positive, curious, and empowering. We talk about her love of the brain, the PD Avengers, the power of storytelling, and why integrated medicine does come with some warning labels. We hope you will enjoy this conversation as much as we do. Thank you for listening. Add your voice to the show and leave a message for us here; https://www.speakpipe.com/WhenLifeGivesYouParkinsons Follow us, Larry & Rebecca Gifford  Twitter: @ParkinsonsPod Facebook: Facebook.com/ParkinsonsPod Instagram: @parkinsonspod Thank you to the following people featured in this episode: Dr. Indu Subramanian, Movement Neurologist over seeing Parkinson’s Center of Excellence at the West Los Angeles Veteran’s Hospital and a neurologist at UCLA Hospital. Follow her on twitter at @drisubramanian  Diagnosed with Parkinson’s? You are not alone. Contact presenting partner Parkinson Canada http://www.parkinson.ca/, call the toll free hotline 1-800-565-3000 or on Twitter you can message @ParkinsonCanada Thanks also to our content and promotional partners The Michael J. Fox Foundation Parkinson’s Podcast hosted by Larry Gifford Spotlight YOPD – The only Parkinson’s organization dedicated to raising awareness for Young Onset Parkinson’s disease and funds for the Cure Parkinson’s Trust.  PD Avengers - United to end Parkinson’s. Join us. World Parkinson Congress 2022 –Make plans to join us for #WPC2022 in Barcelona, Spain. Credits Dila Velazquez – Story Producer Greg Schott – Sound Design See omnystudio.com/listener for privacy information.

In this episode of When Life Gives You Parkinson’s, my wife Rebecca and I are talking with two leaders of Parkinson's organizations about the impact coronavirus has had on advocacy, collaboration, new programs. Karen Lee and Elizabeth “Eli” Pollard are true leaders with serious minds and senses of humor, and both are visionary when it comes to bringing the Parkinson community together with a purpose.  Dr. Karen Lee took on the role of President and CEO of Parkinson’s Canada in the middle of the Coronavirus pandemic. She’s taking the work-at-home mandate as a chance to meet and get to know her staff, advocates, and leaders of other organizations virtually, “We talk with all the various groups, look for opportunities, synergies, it's not about trying to compete and were not looking to duplicate efforts, but really looking for efficiencies and opportunities.” Parkinson Canada is also establishing a Parkinson Advisory Council to help inform decisions and make recommendations to the charity. Eli Pollard, Executive Director of World Parkinson Coalition, would typically make 12 to 15 trips to various destinations as she plans for the World Parkinson Congress 2022 in Barcelona. With travel restricted by COVID-19, she has been busy creating new programs including a dual language webinar series where the same presenters host a webinar first in English and then thirty minutes later in Spanish.  She’s also just announced that May 17-21, 2021 is the inaugural VIRTUAL World Parkinson Congress, “We've been chewing on this idea for a long time and COVID sort of pushed our hand, which is great. So it would be sort of “year one” is the in-person Congress, “year two” and “year three” would be a virtual Congress. And so we're calling it WPC Virtual.” This year’s theme is advancing science care and living with Parkinson's. Their will be around 80 presenter's, with 5 tracks, but all the content for each day will be release at once for virtual attendees to watch it at their convenience. There will be live Q&A sessions 24 hours after each scheduled session. The WPC Virtual admission is $25.00, all inclusive.                                      Thank you for listening. Add your voice to the show and leave a message for us here; https://www.speakpipe.com/WhenLifeGivesYouParkinsons Follow us, Larry & Rebecca Gifford  Twitter: @ParkinsonsPod Facebook: Facebook.com/ParkinsonsPod Instagram: @parkinsonspod Thank you to the following people featured in this episode: Dr. Karen Lee – President and CEO of Parkinson Canada@Dr_KarenLee To learn more about the Parkinson Advisory Council https://www.parkinson.ca/listing/parkinson-advisory-council-member/ Eli Pollard – Executive Director, World Parkinson Coalition #WPC2022 For more information on Dual Language webinars https://www.worldpdcoalition.org/page/webinarseries For more information on 2021’s VIRTUAL World Parkinson Congress https://www.worldpdcoalition.org/page/WPCVirtual For more information on the WPC Research Spotlight https://www.worldpdcoalition.org/events/EventDetails.aspx?id=1470125 For more information on 2022’s World Parkinson Congress in Barcelona https://www.worldpdcoalition.org/events/EventDetails.aspx?id=1470125 Diagnosed with Parkinson’s? You are not alone. Contact presenting partner Parkinson Canada http://www.parkinson.ca/, call the toll free hotline 1-800-565-3000 or on Twitter you can message @ParkinsonCanada Thanks also to our content and promotional partners The Michael J. Fox Foundation Parkinson’s Podcast hosted by Larry Gifford Spotlight YOPD – The only Parkinson’s organization dedicated to raising awareness for Young Onset Parkinson’s disease and funds for the Cure Parkinson’s Trust.  PD Avengers - United to end Parkinson’s. Join us. World Parkinson Congress 2022 –Make plans to join us for #WPC2022 in Barcelona, Spain. See omnystudio.com/listener for privacy information.

In this episode of When Life Gives You Parkinson’s, Larry and Rebecca Gifford welcome 2021 by digging through a sack full of hope. Each week there seems to be another headline that signals major breakthroughs – as in bio-markers and disease altering treatments – are just around the corner for Parkinson’s. We talk to two people who confirm we are on the precipice of major changes in how we view and treat the disease.  However, it is not just about the diagnosis and treatments. PD advocates come in all shapes and sizes – from 80 year old driveway walkers, to middle aged soccer players, to geeks and nerds sitting behind a computer screen. Each are unleashing their super powers on the PD community and owning it. Get ready for lasers in your head, a race with the moon and the inaugural Parkython. Plus, there’s a tomato… a laser… a magic ring…  Uma Thurman….Barcelona, and a serious discussion of wearables for non-invasive measuring of dopamine levels. If you are a half-glass empty person, this episode will either be so packed with hope is shooting out your ears or you will have 17 more great, positive, groundbreaking, even life changing, “wow” moment things to find flaw with. Thank you for listening. Add your voice to the show and leave a message for us here; https://www.speakpipe.com/WhenLifeGivesYouParkinsons Follow us, Larry & Rebecca Gifford  Twitter: @ParkinsonsPod Facebook: Facebook.com/ParkinsonsPod Instagram: @parkinsonspod Thank you to the following people featured in this episode: David Vocadlo, Canada Research Chair in Chemical Biology, Simon Fraser University. His research website is here. Debi Brooks, Co-Founder and Executive Vice Chairman of the Michael J. Fox Foundation. Listen to Episode One of the podcast series “Milestones and Momentum in Parkinson’s Research” Charlie Appleyard –  Learn about Sport Parkinsons here. The “Race the Moon” announcement will be on Monday, January 11, 2021. Rui Cuoto – Read about Parkython (Parkinsons + Hackathon) and register to be a part of it! Kevin Krejci – Learn more about the Oura Ring we discussed.  John Dean – For details on the EPDA’s Keep on Moving and ExerciseCast click the links.  Ralph & Berys Richardson – Check out Team Ralph on the SuperWalk website Greg Hicks – Greg documents Ralph’s campaign on Facebook Special thanks to Pulp Fiction and Uma Thurman’s tomato joke, Dave Clark (Happy 10th-Parkyversary), the generic voice guy for Vie Light, and Babe Ruth for calling his shot. Here’s a link to the photo of the Levodopa Tomato. Diagnosed with Parkinson’s? You are not alone. Contact presenting partner Parkinson Canada http://www.parkinson.ca/, call toll free hotline 1-800-565-3000, on Twitter @ParkinsonCanada Thanks also to our content and promotional partners The Michael J. Fox Foundation Parkinson’s Podcast hosted by Larry Gifford Spotlight YOPD – The only Parkinson’s organization dedicated to raising awareness for Young Onset Parkinson’s disease and funds for the Cure Parkinson’s Trust.  PD Avengers - United to end Parkinson’s. Join us. World Parkinson Congress 2022 –Make plans to join us for #WPC2022 in Barcelona, Spain. See omnystudio.com/listener for privacy information.

In this episode of When Life Gives You Parkinson’s, you will meet Ralph and Berys Richardson who have been married 52 years. Five years ago, doctors diagnosed Ralph with Lewy Body Dementia and then Parkinson’s disease a few years later. When COVID-19 hit, Ralph’s usual exercise programs were cancelled. So, with the help of Berys and his caretaker Greg Hicks, he decided to walk up and down his driveway everyday. He set his mind to doing 30 laps. He reach his goal in 17 days. Then he set his sights a bit higher, walk 100 days to raise $10,000. More than 200 days later, he’s still walking and he’s raised more than $30,000 for Parkinson Canada. Also, this episode is the final episode for contributor Niki Reitmayer. We say farewell and good luck. Thank you for listening. Add your voice to the show and leave a message for us here; https://www.speakpipe.com/WhenLifeGivesYouParkinsons Follow us, Larry & Rebecca Gifford  Twitter: @ParkinsonsPod Facebook: Facebook.com/ParkinsonsPod Instagram: @parkinsonspod A fond farewell to Co-host and Producer Niki Reitmeyer. We love you, will miss you and wish all the best. Thanks for going on this journey with us. Thank you to the following people featured in this episode: Ralph & Berys Richardson – Check out Team Ralph on the SuperWalk website Greg Hicks – Greg documents Ralph’s campaign on Facebook Diagnosed with Parkinson’s? You are not alone. Contact presenting partner Parkinson Canada http://www.parkinson.ca/, call toll free hotline 1-800-565-3000, on Twitter @ParkinsonCanada Thanks also to our content and promotional partners Parkinson’s IQ + You– A free, series of Parkinson’s events from the Michael J. Fox Foundation Spotlight YOPD – The only Parkinson’s organization dedicated to raising awareness for Young Onset Parkinson’s disease and funds for the Cure Parkinson’s Trust. PD Avengers - We want to help end Parkinson’s disease. Join us. World Parkinson Congress 2022 –Make plans to join us for #WPC2022 in Barcelona, Spain.   Credits Dila Velazquez – Story Producer Greg Schott – Sound Design See omnystudio.com/listener for privacy information.

In this episode of When Life Gives You Parkinson’s, what happens when the side effects of your medication are causing more harm than the disease itself? Many people with Parkinson’s are treated with dopamine agonists, which work perfectly for thousands of people, but can cause uncontrollable, destructive behaviors for others. Among the issues are compulsive shopping, hyper-sexuality, binge eating, internet addictions, and excessive gambling. Larry, Rebecca and Niki will introduce you to two people with Parkinson’s who experienced impulse control disorder while on agonists. One of them gained 60 pounds and the other went deep in debt, lost her inhibitions, her job and nearly everything else. Thank you for listening. Add your voice to the show and leave a message for us here; https://www.speakpipe.com/WhenLifeGivesYouParkinsons Follow us, Larry & Rebecca Gifford  Twitter: @ParkinsonsPod Facebook: Facebook.com/ParkinsonsPod Instagram: @parkinsonspod Follow Co-host and Producer Niki Reitmeyer Twitter: @Niki_Reitmayer Thank you to the following people featured in this Vicki Dillon – PwP, follow Vicki on Twitter and her website Ken Robinson – Vicki’s Partner                                                                                                          Susan O’Rourke – PwP, President of Artfront Galleries in Newark, NJ Dr. Elana Clar – Neurologist, Movement Disorder Specialist, New Jersey Brain and Spine Dave Andrews – PwP, Follow Dave on Twitter Gil Thelon – PwP, Gil writes about Parkinson’s at www.shufflingeditor.com Dr. Jonathon Squires – Neurologist, Movement Disorder Specialist at Djavad Mowafaghian Centre for Brain Health Special thanks to Niki Reitmayer for sharing her findings from her UBC Psych 301 Final: Impulse Control Disorders: The Strange Side Effect of Dopamine Agonists When Used to Treat Parkinson’s Disease. CREDIT: Sex, Lies and Parkinson’s Documentary 2011, Channel 4 production. Directed by Oliver Cheetham, Produced by Oliver Cheetham and James Rogan Diagnosed with Parkinson’s? You are not alone. Contact presenting partner Parkinson Canada http://www.parkinson.ca/, call toll free hotline 1-800-565-3000, on Twitter @ParkinsonCanada Thanks also to our content and promotional partners Parkinson’s IQ + You– A free, series of Parkinson’s events from the Michael J. Fox Foundation Spotlight YOPD – The only Parkinson’s organization dedicated to raising awareness for Young Onset Parkinson’s disease and funds for the Cure Parkinson’s Trust.  PD Avengers - We want to help end Parkinson’s disease. Join us. World Parkinson Congress 2022 –Make plans to join us for #WPC2022 in Barcelona, Spain. See omnystudio.com/listener for privacy information.

This season we are talking a lot about Parkinson’s advocacy. From advocating for yourself with your doctor to people with Parkinson’s communicating with law makers, and others who are educating, participating in research or sharing their story whether through a podcast, a blog, a book, Social Media, magazines, or one on one conversations with a friend. In this episode of When Life Gives You Parkinson’s, host Larry Gifford introduces you to Parkinson’s advocate Christine Jeyachandran. Christine is an Australian living in Peru with her family. They met in Japan at the World Parkinson Congress where she was a finalist in the video competition. Her video tracked her journey to learn gymnastics with PD and ultimately achieve a handstand. Now Christine brings hope, urgency and education to her Parkinson’s advocacy through her website and videos at www.handstandforparkinson.com. Thank you for listening. Add your voice to the show and leave a message for us here; https://www.speakpipe.com/WhenLifeGivesYouParkinsons Follow us, Larry & Rebecca Gifford  Twitter: @ParkinsonsPod Facebook: Facebook.com/ParkinsonsPod Instagram: @parkinsonspod Follow Co-host and Producer Niki Reitmeyer Twitter: @Niki_Reitmayer   Diagnosed with Parkinson’s? You are not alone. Contact presenting partner Parkinson Canada http://www.parkinson.ca/, call toll free hotline 1-800-565-3000, on Twitter @ParkinsonCanada Thanks also to our content and promotional partners Parkinson’s IQ + You– A free, series of Parkinson’s events from the Michael J. Fox Foundation Spotlight YOPD – The only Parkinson’s organization dedicated to raising awareness for Young Onset Parkinson’s disease and funds for the Cure Parkinson’s Trust.  PD Avengers - We want to help end Parkinson’s disease. Join us. World Parkinson Congress 2022 –Make plans to join us for #WPC2022 in Barcelona, Spain.   Credits Dila Velazquez – Story Producer Greg Schott – Sound Design See omnystudio.com/listener for privacy information.

In this episode of When Life Gives You Parkinson’s, listen in as Larry Gifford gets his sixth month check up with his neurologist. Larry, his wife Rebecca and co-host Niki Reitmayer discuss the importance of trust and communication in building a relationship with your neurologist and all the other members of your care team – even your partner and your friends. Plus, saying “no” to a doctor can be difficult, but it is an important option to use when you do not agree with the prescribed treatment plan. Thank you for listening. Add your voice to the show and leave a message for us here; https://www.speakpipe.com/WhenLifeGivesYouParkinsons Follow us, Larry & Rebecca Gifford  Twitter: @ParkinsonsPod Facebook: Facebook.com/ParkinsonsPod Instagram: @parkinsonspod Follow Co-host and Producer Niki Reitmeyer Twitter: @Niki_Reitmayer Thank you to the following people featured in this episode… Jonathon Squires, MD Djavad Mowafaghian Centre for Brain Health Heather Kennedy, #WPC2022 Ambassador Vicki Dillon, #ParkieandProud, GDNF’er Diagnosed with Parkinson’s? You are not alone. Contact presenting partner Parkinson Canada http://www.parkinson.ca/, call toll free hotline 1-800-565-3000, on Twitter @ParkinsonCanada Thanks also to our content and promotional partners Parkinson’s IQ + You– A free, series of Parkinson’s events from the Michael J. Fox Foundation Spotlight YOPD – The only Parkinson’s organization dedicated to raising awareness for Young Onset Parkinson’s disease and funds for the Cure Parkinson’s Trust.  PD Avengers - We want to help end Parkinson’s disease. Join us. World Parkinson Congress 2022 –Make plans to join us for #WPC2022 in Barcelona, Spain.   Credits Dila Velazquez – Story Producer Rob Johnston – Sound Design   See omnystudio.com/listener for privacy information.

In this episode of When Life Gives You Parkinson’s, three of the authors of the book Ending Parkinson’s Disease explain how Parkinson’s is preventable. WLGYP’s host Larry Gifford interviewed Bas Bloem MD, PhD, Ray Dorsey MD, and Michael S. Okun MD for a Parkinson Canada webinar. Larry, his wife Rebecca and co-host Niki Reitmayer listen, learn and react to the author’s frank discussion of Parkinson’s disease, why they believe it is preventable, who is at risk, how COVID-19 maybe triggering the onset of PD, and why more and more experts believe it to be a global pandemic.  Thank you for listening. Add your voice to the show and leave a message for us here; https://www.speakpipe.com/WhenLifeGivesYouParkinsons Follow us, Larry & Rebecca Gifford  Twitter: @ParkinsonsPod Facebook: Facebook.com/ParkinsonsPod Instagram: @parkinsonspod Follow Co-host and Producer Niki Reitmeyer Twitter: @Niki_Reitmayer Thank you to the following people featured in this episode… Bas Bloem MD, Phd, Ray Dorsey, MD and Michael S. Okun, MD – details on their book are available at www.endingpd.ord Diagnosed with Parkinson’s? You are not alone. Contact presenting partner Parkinson Canada http://www.parkinson.ca/, call toll free hotline 1-800-565-3000, on Twitter @ParkinsonCanada Thanks also to our content and promotional partners Parkinson’s IQ + You– A free, series of Parkinson’s events from the Michael J. Fox Foundation Spotlight YOPD – The only Parkinson’s organization dedicated to raising awareness for Young Onset Parkinson’s disease and funds for the Cure Parkinson’s Trust.  PD Avengers - We want to help end Parkinson’s disease. Join us. World Parkinson Congress 2022 –Make plans to join us for #WPC2022 in Barcelona, Spain. See omnystudio.com/listener for privacy information.

In this episode of When Life Gives You Parkinson’s, you will learn when and how to switch neurologists and what doctor’s find annoying about you. It may be hard to believe, but doctors do not know everything about treating Parkinson’s disease. From ridiculous diagnosis stories, tragic treatment options, lack of empathy, the God complex and life altering misdiagnosis, many people with Parkinson’s have been through wringer and ultimately fired their neurologist.   The doctor-patient relationship is critical for treating Parkinson’s. “It’s really important to have someone you can talk to openly and honestly and who listens to you,” says Dr. Rachel Dolhun, a board certified movement disorder specialist and Vice President of Medical Communications for the Michael J. Fox Foundation. “Parkinson's is really all about expressing how things are going on a daily basis, how your medicines are or aren't working, and how new symptoms are coming up or how symptoms are changing.” In addition to Dr. Dolhun, this episode features conversations with a number of people with Parkinson’s including Dave Clark, Gil Thelan, and Jeanette Fisher-Pynn. Thank you for listening. Add your voice to the show and leave a message for us here; https://www.speakpipe.com/WhenLifeGivesYouParkinsons Follow us, Larry & Rebecca Gifford  Twitter: @ParkinsonsPod Facebook: Facebook.com/ParkinsonsPod Instagram: @parkinsonspod Follow Co-host and Producer Niki Reitmeyer Twitter: @Niki_Reitmayer Thank you to the following people featured in this episode… Dr. Rachel Dolhun – Board Certified Movement Disorder Specialist and Vice President of Medical Communications for the Michael J. Fox Foundation. Hosts “Ask the MD” Blog and Videos.   Dave Clark – PwP, former Sky Sports television announcer, Parkinson’s advocate and fundraiser. Gil Thelen – PwP, former President and Publisher of The Tampa Tribune, and author of “Counterpunch: Duking It Out With Parkinson’s.” Jeanette Fisher-Pynn – PwP, and featured in our “Misdiagnosis” episode Also appearing… Ellen Bookman – www.pdboxing.org and on Twitter @luvlivin3 David Ashford Jones – Former Pharmaceutical Executive turned Parkinson’s advocate Jill Carson – PwP, founder of Parkinson’s Wellness Project in Victoria, BC Kitty Fitton – PwP, www.kittyfitton.com      Michael S. Fitts – Michael J. Fox Patient Council Heather Kennedy – PwP, a.k.a. Kathleen Kiddo, featured in this previous episode on the darkness of depression. Dr. Stuart Factor - Professor of Neurology, Director of the Movement Disorders Program and Vance Lanier Chair of Neurology at Emory University School of Medicine Diagnosed with Parkinson’s? You are not alone. Contact presenting partner Parkinson Canada http://www.parkinson.ca/, call toll free hotline 1-800-565-3000, on Twitter @ParkinsonCanada Thanks also to our content and promotional partners Parkinson’s IQ + You– A free, series of Parkinson’s events from the Michael J. Fox Foundation Spotlight YOPD – The only Parkinson’s organization dedicated to raising awareness for Young Onset Parkinson’s disease and funds for the Cure Parkinson’s Trust.  PD Avengers - We want to help end Parkinson’s disease. Join us. World Parkinson Congress 2022 –Make plans to join us for #WPC2022 in Barcelona, Spain. See omnystudio.com/listener for privacy information.

In this premiere episode of season three of the podcast, my wife Rebecca, co-host Niki Reitmayer and I discuss what life it like with Parkinson’s three years after diagnosis and what impact has COVID-19 had on us and others with PD. Communication came up as a relatively new and big issue in the Gifford home. For 20 years, our instinctive interactions were a fun and easy part of our relationship. Now I take things literal when Rebecca is being figurative, she has to repeat herself over and over again, and I get trapped in my Parkinson’s bubble at certain times of the day. “It gets frustrating,” says Rebecca. “Because, I've repeated myself a couple of times on something and it's still not retained. For me, it's re learning patience and understanding and knowing that it's not just that he's too busy and he's not paying attention or whatever. No, it's the Parkinson's.” Larry and Rebecca also share how they are working together and individually to improve the communication glitches the Parkinson’s is causing.  Thank you for listening. Add your voice to the show and leave a message for us here; https://www.speakpipe.com/WhenLifeGivesYouParkinsons Follow us, Larry & Rebecca Gifford  Twitter: @ParkinsonsPod Facebook: Facebook.com/ParkinsonsPod Instagram: @parkinsonspod Follow Co-host and Producer Niki Reitmeyer Twitter: @Niki_Reitmayer Thank you to… Omotola Thomas www.parkinsonafrica.com Sally Bromley https://oxfordparkinsons.org.uk/ Jayne Calder https://www.raise-a-million-for-gdnf.org/ For more info on our presenting partner Parkinson Canada head to http://www.parkinson.ca/ The toll free hotline 1-800-565-3000 Or follow them on Twitter Parkinson Canada       @ParkinsonCanada Thanks also to our content and promotional partners Parkinson’s IQ + You– A free, series of Parkinson’s events from the Michael J. Fox Foundation Spotlight YOPD – The only Parkinson’s organization dedicated to raising awareness for Young Onset Parkinson’s disease and funds for the Cure Parkinson’s Trust.  PD Avengers - We want to help end Parkinson’s disease. Join us. World Parkinson Congress 2022 –Make plans to join us for #WPC2022 in Barcelona, Spain. See omnystudio.com/listener for privacy information.

In this episode of When Life Gives You Parkinson's, I explore how the collision of health, technology and innovation in the private sector is revolutionizing approaches to measuring brain activity and treat brain related issues from Parkinson’s to major brain injuries and concussions. A major part of having Parkinson's disease is finding out what matches you in terms of diet, exercise, pharmaceuticals, therapies and relationships so you can manage your symptoms and maintain the best quality of life for as long as possible. But, are you aware of everything that's out there that you could be using? I wasn't. From hand-made, steel stationary bikes designed especially for people with Parkinson’s to a tongue stimulator to improve your balance and walking gait, I feel as if I’ve found a secret Bat-cave of cool, technology that I never knew existed. All of it comes with a price tag and insurance does not cover it. DISCLAIMER: I am not a spokesperson for these companies or products, they are not clients and have not paid for this placement. These products and services are part of my journey in exploring all the ways to live my best life with Parkinson’s. First, the stationary bike. It is called the Theracycle. Joe Possenti bought a Theracycle a year ago and uses it most days. He has had Parkinson’s for 12-years. He told me it’s a game-changer for him. The 200-pound, motorized cycle is designed to improve the lives of people with degenerative brain diseases and works by having assisted pedaling and handlebars that move like an elliptical machine and a the rowing machine. The most popular Theracycle costs $4,800 ($6,700 CAD), is delivered free in the continental United States and comes with a money-back guarantee. There is quite an operation underway in Surrey B.C. Recently, I toured The Health and Technology District, which is located across the street from Surrey Memorial Hospital. It is the brainchild of Dr. Ryan D’Arcy, a neuroscientist and entrepreneur. Dr. D’Arcy says there are 75 tech companies and 96 medical specialists integrated, collaborating and bumping into each other in one building alone. As I toured the facility, I realized I was not aware how many available treatments there are for the symptomatic issues of Parkinson’s. For instance, I saw two really cool therapies for treating gait issues so people can learn to walk normally again. The Lokomat, at NeuroMotion Physical Therapy, reminds me of Iron Man. Patients slip on these huge robotic legs strapped to a treadmill. Through forced and repeated motion, new neuropathways are created which retrains your brain’s communication to your legs and feet. The second treatment is called PoNS, which is short for Portable Neuro-modulation Stimulator.  This lightweight portable device slips around your neck rather snug and hanging off one end is a rectangle pad which goes into your mouth. It stimulates your tongue. Sonya Brody is a neuroscientist and the Vice President of services at the Surrey Neuroplasticity Clinic, and she told me we all have 12 cranial nerves that come off the back of our brain and two of them connect to the front, one-third of your tongue. One of the ongoing issues with treating Parkinson’s is the measurement tools for the disease progression and executive function are too subjective. Dr. D’Arcy created The NeuroCatch™ to take the guesswork out of measuring what is going on inside your head. It’s a six-minute test that measures auditory sensation, basic attention, and cognitive processing. Not only helpful with measuring brain function in people with Parkinson’s, but D’Arcy is working with hockey clubs to conduct the 6-minute test during games to determine if a player has a concussion or not. Another machine affectionately referred to as the “barf box,” measures balance. The NeuroCom® SMART Balance Master® measures how well your eyes, inner ear and muscles and joints are working together to maintain balance. The client stands in the center of a metal plate surrounded by three colourful walls. Through a series of short tests the plate moves, the walls tilt, and eyes are sometimes open and sometimes closed. During my tour, I tested both my brain function and my balance. My scores on both systems were less than impressive, which is no surprise. But, what is a surprise is that these treatments and tools exist and I was oblivious to them until now. It makes me wonder what else is out there and available to the Parkinson’s community. The different tests and treatments cost anywhere from $150 for one test on the NeuroCom® SMART Balance Master® or reportedly between $14,000 to $16, 000 for 14 weeks of treatments with the PoNS device. Please comment by leaving us a voice message here: https://www.speakpipe.com/WhenLifeGivesYouParkinsons. Follow me, Larry Gifford  Twitter: @ParkinsonsPod Facebook: Facebook.com/ParkinsonsPod Instagram: @parkinsonspod Thank you to: The Health & Technology District Dr. Ryan D’Arcy, Neuroscientist and Co-Founder of the Health and Technology District Anne Shaw, Clinic Manager at Neuromotion Physiotherapy and Rehabilitation Sonia Brodie, Neuroscientist and VP of Services at the Surrey Neuroplasticity Clinic Matieu Gagnon, Kinesiologist at the Surrey Neuroplasticity Clinic Theracycle Rich Bloomenthal, Head of Sales at Theracyle Joe and Sarah Possenti Al Coen, Coen Communications; Cameraman, Video and Audio producer, Editor, big supporter of the pod, and all around great guy. and to my wife and partner in Parkinson’s Rebecca Gifford. Our presenting partner is Parkinson Canada. Its toll-free hotline is 1-800-565-3000. Follow Parkinson Canada on Twitter @ParkinsonCanada. Find the new Parkinson Clinical Guideline at www.parkinsonclinicalguideline.ca. Our content and promotional partners Parkinson’s IQ + You — A free, series of Parkinson’s events from the Michael J. Fox Foundation Spotlight YOPD — The only Parkinson’s organization dedicated to raising awareness for Young Onset Parkinson’s disease and funds for the Cure Parkinson’s Trust. WPC2022 — Save the date for the sixth World Parkinson Congress, June 7 to 10, 2022 in Barcelona, Spain. The only inclusive scientific conference opens its doors to people with Parkinson’s and families.  

In this episode of When Life Gives You Parkinson’s, my wife and partner in Parkinson’s, Rebecca Gifford and I share how COVID-19 is affecting our family. From managing stress and PD symptoms to becoming accustomed to living well during a time of uncertainty, we are all learning many lessons. Here are five of the lessons that Rebecca and I have learned thus far. My Parkinson’s symptoms are less intense when I work from home compared to when I go to the office. This is a revelation that I probably would not have discovered without the pandemic forcing me to work remotely. I have already started discussing this with my company to figure out what my new reality could be when we are through the social distancing demands and most employees are encouraged to return to the office. Telemedicine is long overdue. I didn’t “go” to my last neurology check-up, I logged into it from my kitchen table. I feel like I had the full attention of my doctor and there we no interruptions for signatures, questions or updates on other patients from the nurses. It was just the doctor, Rebecca and me. If you live hours away from a neurologist or movement disorder specialist or just have difficulty getting from your home to anywhere, telemedicine makes a lot of sense. I hope it is here to stay. Connecting with community can be energizing, supportive and inspiring. From one on one FaceTime video calls with family and friends or group video chats with colleagues and social media “friends” who, until now, we had only met through tweets and Facebook posts. I’m grateful for the time, attention and community so many people have offered with an open heart and open mind. I also love that so many free exercise, yoga, and boxing classes are now being made available online to keep us active and exercising despite being cooped up inside. Managing Parkinson’s symptoms has better prepared people with PD and care partners for COVID-19. The uncertainty of Parkinson’s forces us to approach life minute by minute, hour by hour, and day by day. We make plans with the best of intentions and cancel them more often than we would like because a symptom flares up or exhaustion overwhelms us. Most people are not accustomed to have so much lack of control of their life. Many are resisting the isolation, are angry, frustrated, and are desperately grasping for control of something. The Parkinson’s community can be role models for others on how to let go and embrace what comes in each moment.   It is exciting to see how when the world decides to make something a priority, Government and regulatory red tape magically disappears and the finest minds of the world collaborate to solve a single issue. In this case, it is the race to creating a vaccination for COVID-19. Now that we know it is possible, I propose after COVID-19 is under control, we take this model and aim those global resources and all of that passion and urgency on to finding a cure for Parkinson’s… and then ALS, MS, Alzheimer’s and all the rest. In the podcast, we discuss these and many other lessons and observations COVID-19 has thrust upon us. Please take time to share what lessons, observations and coping mechanisms you have discovered during these unprecedented times by leaving a voice message here:  https://www.speakpipe.com/WhenLifeGivesYouParkinsons Follow me, Larry Gifford  Twitter: @ParkinsonsPod Facebook: Facebook.com/ParkinsonsPod Instagram: @parkinsonspod Follow Co-host and Producer Niki Reitmayer Twitter: @Niki_Reitmayer Thank you to my wife and partner in Parkinson’s Rebecca Gifford. Our presenting partner is Parkinson Canada http://www.parkinson.ca/ The toll free hotline 1-800-565-3000 Follow them on Twitter @ParkinsonCanada Find the new Parkinson Clinical Guideline www.parkinsonclinicalguideline.ca Our content and promotional partners Parkinson’s IQ + You– A free, series of Parkinson’s events from the Michael J. Fox Foundation Spotlight YOPD – The only Parkinson’s organization dedicated to raising awareness for Young Onset Parkinson’s disease and funds for the Cure Parkinson’s Trust.  WPC2022- Save the date for the sixth World Parkinson Congress, June 7 to 10, 2022 in Barcelona, Spain in 2022. The only inclusive scientific conference opens its doors to people with Parkinson’s and families.  

In this special Parkinson’s Awareness Month episode of When Life Gives You Parkinson’s, I chat with Jimmy Choi. Jimmy was diagnosed with Parkinson’s seventeen years ago. He ignored it for eight years. He took his pills every day, but he didn’t talk about it, he ignored it, he hid it and lied about it to friends and family. He was quite certain himself that the Parkinson’s diagnosis was probably wrong. “I convinced myself that one day I'm going to wake up and my doctor is going to tell me that, ‘Oh I'm sorry Mr. Choi, we made a mistake.” Jimmy continues his fantasy, “You actually have a tumor in your head. Once we remove it you're gonna be perfectly fine.’” Jimmy is stubborn. It takes a lot to change his position. But, Parkinson’s will not be ignored. Over the course of eight years, gradual changes happen on a daily basis. Insomnia, rigidity, and fatigue were all taking a toll on him. Parkinson’s disease pushed Jimmy to the edge. And he fell. “I was walking with a cane. I was no longer active. And as if things weren't bad enough, I was snapping at my family, screaming at my kids, and sitting around really not contributing to the daily activities of a household. I was walking down the stairs with my then 8 month old son Mason and we fell down the stairs.” His wife Cheryl and their daughter Karina watched in horror. At that moment, Jimmy made a decision that would change his life forever. He knew he was going to work hard to become the dad and husband his family deserved. He also began to participate in clinical research trials. It was during those trials, Jimmy realized exercise was a component of every trial he participated in and when he exercised he felt better. On his own, he began to take walks around the neighbourhood with his cane. And before too long, he was walking without it. His walk become a jog and his jog trained him for a 5k. Jimmy successfully transformed his stubborn resistance to Parkinson’s into determination, positivity and persistence in living an active, healthy life with the disease. In the past seven years, Jimmy has participated in over 100 half marathons, 15 full marathons, one ultra-marathon, six Grand Fondo rides, multiple Spartan Races and countless 5K and 10K runs. He became a high profile Parkinson’s advocate when he competed on American Ninja Warrior. Through his events, Jimmy has raised more than $250,000 for Parkinson's research. You don’t have to be Jimmy Choi when you’re exercising, but you can be Jimmy Choi in how you approach your Parkinson’s disease. He takes his PD one day, and sometimes one hour, at a time. His mantra is, “make today a little better than yesterday and make tomorrow a little bit better than today.”   Knowing Jimmy Choi is in the fight against Parkinson’s, makes today better yesterday already. Please comment by leaving us a voice message here: https://www.speakpipe.com/WhenLifeGivesYouParkinsons Follow me, Larry Gifford  Twitter: @ParkinsonsPod Facebook: Facebook.com/ParkinsonsPod Instagram: @parkinsonspod Follow Co-host and Producer Niki Reitmayer Twitter: @Niki_Reitmayer Thank you to my wife and partner in Parkinson’s Rebecca Gifford. Also, thank you to the following contributors and guests. Follow Jimmy Choi on twitter and instagram Our presenting partner is Parkinson Canada http://www.parkinson.ca/ The toll free hotline 1-800-565-3000 Follow them on Twitter @ParkinsonCanada Find the new Parkinson Clinical Guideline www.parkinsonclinicalguideline.ca Our content and promotional partners Parkinson’s IQ + You– A free, series of Parkinson’s events from the Michael J. Fox Foundation Spotlight YOPD – The only Parkinson’s organization dedicated to raising awareness for Young Onset Parkinson’s disease and funds for the Cure Parkinson’s Trust.  WPC2022- Save the date for the sixth World Parkinson Congress, June 7 to 10, 2022 in Barcelona, Spain in 2022. The only inclusive scientific conference opens its doors to people with Parkinson’s and families.  

In this special Parkinson’s Awareness Month episode of When Life Gives You Parkinson’s, I chat with leaders of three Parkinson’s organizations about the never-ending hunt for a cure. The world has been five years away from a cure for Parkinson’s for the last thirty years or so. That sentiment is an update from when Tom Isaacs uttered a similar phrase in the early 2000’s. Isaacs had Parkinson’s and was a fierce advocate for those living with the disease. He co-founded Cure Parkinson’s Trust in England in 2005. Today, that organization’s Deputy CEO, Helen Matthews, continues to carry Tom’s torch. She says we are an awful lot closer to a cure than we were 15 years ago. However, “for there to be a game changer,” Matthews says, “Parkinson's needs to be a global health priority recognized by governments globally who are properly investing in this.” Matthews points to Australia, where the government has allocated $30 million over five years to identify disease-modifying drugs to slow the progression of Parkinson’s. “You know, we need further injections of cash here in the UK. We need further injections of cash in Canada. We need consortiums working in all territories. You know, North America really investing and making sure that Parkinson's is a health priority.” Of note, Parkinson Canada has requested $30 million over five years from the Federal Government to establish the Canadian Open Parkinson’s Network. C-OPN would be a shared, open data platform with the goal to accelerate breakthroughs, improve patient outcomes, increase clinical trial involvement, and ultimately find a cure for this life-limiting disease. It would establish Canada as another leading country in the global commitment to ending Parkinson’s disease. The 2020 Federal Budget was to be unveiled on March 15th, but has been indefinitely delayed due to COVID-19.   Marking 20 years in operation and having invested one billion dollars in Parkinson’s research dollars, The Michael J. Fox Foundation has learned a thing or two over the past two decades. Deputy CEO Sohini Chowdhury is grateful they have raised such a mind-blowing amount of money for research, but is careful to keep it in perspective. “When you think about drug development in general, “ Chowdhury says, “the numbers that are often cited or that it takes anywhere between 12 and 15 years to get a drug moving through the development process and into patients hands and that it can cost upwards of a billion dollars that entire process.”  At Parkinson’s UK, Chief Executive Steve Ford and his team have committed 8 million pounds equivalent to more than 14 million Canadian dollars for Parkinson’s research each year. Ford also has helped to establish The Critical Path for Parkinson's. “We've brought together foundations from around the world. The Fox Foundation and the Parkinson's Foundation are involved in this. Ten or eleven global pharmaceutical companies are involved as well.” Ford continues, “And what this is doing is bringing everybody together, sharing data, drug company data, clinical trial data, and the kind of data that some researchers all around the world have from following patients up over a number of years.” All that information is used to shape the future of clinical trials and to work with the regulators to get that kind of approved.” With this approach, individual companies do not have to go and get their own kind of trial design approved by the regulator and spend millions of pounds dollars doing that. The Critical Path for Parkinson’s consortium can do that on behalf of the whole industry, which dramatically reduces the costs of designing new research studies. As more than ten million people with Parkinson’s in the world await the evasive cure, we hold on to hope and Tom Isaac’s believe that a cure is possible. Please comment by leaving us a voice message here: https://www.speakpipe.com/WhenLifeGivesYouParkinsons Follow me, Larry Gifford  Twitter: @ParkinsonsPod Facebook: Facebook.com/ParkinsonsPod Instagram: @parkinsonspod Follow Co-host and Producer Niki Reitmayer Twitter: @Niki_Reitmayer Thank you to my wife and partner in Parkinson’s Rebecca Gifford. Also, thank you to the following contributors and guests. Helen Matthews, Deputy CEO, Cure Parkinson’s Trust – Follow CPT on twitter @CureParkinsonsT Steve Ford, Chief Executive, Parkinson’s UK – Follow PUK on twitter @parkinsonsuk Sohini Chowdery, Deputy CEO, Michael J. Fox Foundation for Parkinson’s Research – Follow MJFF on Twitter @michaeljfox.org Our presenting partner is Parkinson Canada http://www.parkinson.ca/ The toll free hotline 1-800-565-3000 Follow them on Twitter @ParkinsonCanada Find the new Parkinson Clinical Guideline www.parkinsonclinicalguideline.ca Our content and promotional partners Parkinson’s IQ + You– A free, series of Parkinson’s events from the Michael J. Fox Foundation Spotlight YOPD – The only Parkinson’s organization dedicated to raising awareness for Young Onset Parkinson’s disease and funds for the Cure Parkinson’s Trust.  WPC2022- Save the date for the sixth World Parkinson Congress, June 7 to 10, 2022 in Barcelona, Spain in 2022. The only inclusive scientific conference opens its doors to people with Parkinson’s and families.  

In this special Parkinson’s Awareness Month episode of When Life Gives You Parkinson’s, I chat with Heather Kennedy. Heather, recently named an Ambassador to the World Parkinson Congress 2022, is a fierce Parkinson’s advocate from San Francisco. Heather tackles some tough topics; being a woman with PD, dating with bladder urgency, and depression. “Depression? It’s tricky,” she says. “It creeps up, it lies to you, it tells you that you’re nothing, that you’re useless, and that there are millions and billions of people and you don’t matter.” Heather’s action plan for emerging from the darkness includes volunteering and making small positive gestures to people in her community. It gives her something to cling to when the blanket of depression envelops her, “When depression tries to get me, I think ‘hey, people might be depending on me. I’m going to get up for them.’”  The former film and photography production assistant shares her journey online through her alter-ego Kathleen Kiddo, a pen name and a license to be a raw, real and revealing. “I’ve always kept a journal and I love it. It’s a way to clarify and share with the world. It’s a little window to these stories, miraculous stories  – some of which I don’t even know where they come from. They don’t even belong to me.” When you read her social media posts and blog or watch her videos, you quickly realize Heather is funny, bright, sarcastic, creative, inspiring and always finding new, amazing ways to share her Parkinson’s story. Please comment by leaving us a voice message here: https://www.speakpipe.com/WhenLifeGivesYouParkinsons Links we mentioned and source material for the show: Kathleen Kiddo – www.KathleenKiddo.com, on Twitter, on Facebook and Instagram The Inner Sanctum episode featuring the murderous character “Larry Gifford” is from May 15, 1945.It’s called The Black Arthttps://www.speakingofradio.com/interviews/brown-himan-producer-director/ Follow me, Larry Gifford  Twitter: @ParkinsonsPod Facebook: Facebook.com/ParkinsonsPod Instagram: @parkinsonspod Follow Co-host and Producer Niki Reitmayer Twitter: @Niki_Reitmayer Thank you to my wife and partner in Parkinson’s Rebecca Gifford. Also, thank you to the following contributors and guests. Heather Kennedy aka Kathleen Kiddo. Follow her! www.KathleenKiddo.com, Disney Pixar’s Inside Out CBS Mystery Theater, The Creaking Door Inner Sanctum Radio The estate Himan Brown Speaking of Radio.com Our presenting partner is Parkinson Canada http://www.parkinson.ca/ The toll free hotline 1-800-565-3000 Follow them on Twitter @ParkinsonCanada Find the new Parkinson Clinical Guideline www.parkinsonclinicalguideline.ca Our content and promotional partners Parkinson’s IQ + You– A free, series of Parkinson’s events from the Michael J. Fox Foundation Spotlight YOPD – The only Parkinson’s organization dedicated to raising awareness for Young Onset Parkinson’s disease and funds for the Cure Parkinson’s Trust.  WPC2022- Save the date for the sixth World Parkinson Congress, June 7 to 10, 2022 in Barcelona, Spain in 2022. The only inclusive scientific conference opens its doors to people with Parkinson’s and families.  

In this special Parkinson’s Awareness Month episode of When Life Gives You Parkinson’s, I chat with Dave Clark. Dave is a television presenter for SKY TV Sports from Leeds, England. He’s best known for anchoring darts and boxing coverage. His positivity is infectious. He was diagnosed with Parkinson’s in early 2011, but nearly a decade on he’s still broadcasting, has a great attitude, is raising tons of money and attention for the cause. Later this year, he will walk the length of Hadrian's Wall and climb Mount Everest to the base camp at 17,000ft, to raise funds for Parkinson's UK. He has already generated £500,000 towards the charity's work. He also recently announced he will be donating his brain to medical science – to help find a cure for Parkinson’s. During this conversation, we discuss what it was like to tell our bosses about our Parkinson’s, what it was like to meet The Boss (Bruce Springsteen) and why covering Muhammad Ali at the Atlanta Olympics back memories of his father. Dave and I also chat about how social media can be a blessing and curse, commiserate on the anxiety we feel as passengers in a car, and how frustrating it is that people still confuse our symptoms for intoxication. Dave also shared the follow advice for people newly diagnosed with Parkinson’s. He shares this with anyone who contacts him and ask for guidance. How to live a happy life with Parkinson’s by Dave Clark Live in the now. Try not to look too far in the future. Always have something in the diary that excites you. If music makes you happy, don’t live in a silent house where you can brood. Dance, even if you haven’t danced for years. Keep busy, but don’t feel guilty about having the odd sofa day. Stay sociable. If your friends don’t ring you, ring them and arrange to see them on a regular basis. Get up. Dress up. Show up. Never give up. Say YES to invitations, even if you’re feeling rubbish. Exercise makes you feel good, even if you can only manage to get to the corner shop – do it! Stretch every morning. Eat well. Try not to skip meals when you’re shaky. Food is brain fuel. Water makes up about 73-percent of the human brain and helps to make hormones and neurotransmitters. Talk to other people with Parkinson’s online. It’s a really supportive community. Their experience can help your experience. Build a support team around you with people you can trust: friends, neighbours, physio therapist, neurologist, pharmacist, etc. This is “Team YOU.” Only tell people about your Parkinson’s when you are ready. Other people’s grief about your diagnosis can be as hard to deal with and process as the diagnosis itself. Remember, people with Parkinson’s can do amazing things. Do something amazing. Please comment by leaving us a voice message here: https://www.speakpipe.com/WhenLifeGivesYouParkinsons Links we mentioned and source material for the show: Sky TV feature article on Dave’s Parkinson’s and his goal to climb to Everest base camp in 2020 Follow me, Larry Gifford  Twitter: @ParkinsonsPod Facebook: Facebook.com/ParkinsonsPod Instagram: @parkinsonspod Follow Co-host and Producer Niki Reitmayer Twitter: @Niki_Reitmayer Thank you to my wife and partner in Parkinson’s Rebecca Gifford. Also, thank you to the following contributors and guests. Dave Clark. Follow Dave on twitter @DaveClarkTV Our presenting partner is Parkinson Canada http://www.parkinson.ca/ The toll free hotline 1-800-565-3000 Follow them on Twitter @ParkinsonCanada Find the new Parkinson Clinical Guideline www.parkinsonclinicalguideline.ca Our content and promotional partners Parkinson’s IQ + You– A free, series of Parkinson’s events from the Michael J. Fox Foundation Spotlight YOPD – The only Parkinson’s organization dedicated to raising awareness for Young Onset Parkinson’s disease and funds for the Cure Parkinson’s Trust.  WPC2022- Save the date for the sixth World Parkinson Congress, June 7 to 10, 2022 in Barcelona, Spain in 2022. The only inclusive scientific conference opens its doors to people with Parkinson’s and families

In this episode of When Life Gives You Parkinson’s, I talk with Professor of Neurology Ray Dorsey, MD from University of Rochester and the CEO of the Michael J. Fox Foundation Todd Sherer, PhD. These are two of the fourth authors behind a new book called, “Ending Parkinson’s Disease, a prescription for action.” Dorsey, Sherer and co-authors Michael S. Okun, MD at University of Florida and Bastiaan Bloem, MD, PhD of the Netherlands, each approach Parkinson’s disease from a specific point of view. Dorsey is a telehealth and home healthcare advocate who has been using technology to see patients remotely for more than a decade. He directs the Center for Health and Technology, which offers free care to anyone in New York that has Parkinson’s disease. His mission is to offer to anyone, anywhere. Sherer is neuroscientists who was part of a team that found the link between pesticides and Parkinson’s. Okun is a pioneer of surgical treatments for Parkinson’s. Bloem is co-creator of ParkinsonNet, the world’s largest integrated care program for Parkinson’s disease which is customize and individualized networked treatment which can include nutritional advice, physical therapy, occupational therapy, speech therapy, exercise, clever IT, community and hope. Their book clearly portrays Parkinson’s disease as a formidable antagonist. They describe Parkinson’s as a “man-made pandemic,” which thrives today, doubling the rate of diagnosis every 25 years, with no known cure and not enough urgency to slow the spread. The authors point to research which suggests Parkinson’s disease was fueled initially by the industrial revolution and continues to be diagnosed at a rate greater than the rates of aging or population growth due to pesticides that attack the nervous systems of bugs (and people), solvents, contaminated well water, and head trauma. The authors conclude Parkinson’s disease may be man-made. However, just as humans contributed to the rise of Parkinson’s in the nineteenth and twentieth centuries, we can now work together to eradicate the disease. Readers are called to action by focusing on prevention, advocacy, care and treatment. The book concludes with a list of twenty-five concrete steps we can and should take to reduce the worldwide toll of this disease. The list includes banning specific pesticides and solvents, and cleaning up contaminated sites, which will all take vigorously lobbying to the governments of many countries. But there are things they suggest you can do today to reduce your risk of getting Parkinson’s: use a water filter, eat a Mediterranean diet, vigorously exercise for four hours a week, get involved with research, and if you already have Parkinson’s – be loud and share your story. Please comment by leaving us a voice message here: https://www.speakpipe.com/WhenLifeGivesYouParkinsons Links we mentioned and source material for the show: Ending Parkinson’s Disease book official website Parkinson’s Disease Care New York  – Free Care for New Yorker’s with Parkinson’s disease Follow me, Larry Gifford  Twitter: @ParkinsonsPod Facebook: Facebook.com/ParkinsonsPod Instagram: @parkinsonspod Follow Co-host and Producer Niki Reitmayer Twitter: @Niki_Reitmayer Thank you to my wife and partner in Parkinson’s Rebecca Gifford. Also, thank you to the following contributors and guests. Ray Dorsey, MD – following him on Twitter @RayDorseyNeuro Todd Sherer, PhD, CEO of the Michael J. Fox Foundation Our presenting partner is Parkinson Canada http://www.parkinson.ca/ The toll free hotline 1-800-565-3000 Follow them on Twitter @ParkinsonCanada Find the new Parkinson Clinical Guideline www.parkinsonclinicalguideline.ca Our content and promotional partners Parkinson’s IQ + You– A free, series of Parkinson’s events from the Michael J. Fox Foundation Spotlight YOPD – The only Parkinson’s organization dedicated to raising awareness for Young Onset Parkinson’s disease and funds for the Cure Parkinson’s Trust.  WPC2022- Save the date for the sixth World Parkinson Congress, June 7 to 10, 2022 in Barcelona, Spain in 2022. The only inclusive scientific conference opens its doors to people with Parkinson’s and families.  

In this episode of When Life Gives You Parkinson’s, despite some setbacks there is still an appetite to trial a treatment for Parkinson’s that many believe is the antidote. GDNF or Glial cell line derived neurotrophic factor are naturally occurring and are vital for normal functioning of the brain.But, when GDNF is delivered directly to the brain, for some people, it is as if they’ve never had Parkinson’s. The phase II GDNF trial at University of Bristol, seemingly, was made possible through the sheer will and force of the late Parkinson’s advocate Tom Isaacs and his Cure Parkinson’s Trust. The broadcast of Tom’s BBC Radio 4 documentary, “Chasing a Cure,” about the treatment, was heard by Vicky Dillon. She vowed if it ever came around again she’d sign up. And she did. “We were the guinea pigs basically to see if we would tolerate the surgery and the insertion of all this plumbing in our brains,” she said. “They cut me from my hair line to like the middle part of my head and then put in all four catheters that went deep into the into my brain. And then you had another bit of plumbing that run down the side of your head to a port behind you left ear, which is where the infusions were given. So, there was quite a lot of stuff in there.” Vicky was given GDNF for the better part of two years. Her symptoms improved almost immediately, “By the time I took the second infusion, I noticeably felt different. I remember waking up a couple of days afterwards and there was no Parkinson symptoms for about an hour or so. I thought, ‘oh my God!’. And gradually everything started getting better.” Vicky’s symptom improved 63% and all the participants showed cell regeneration on PET scans, but the trail did not meet its primary end point. “That’s ridiculous,” says Jayne Calder. Her husband Darren was also in the trial and it improved his symptoms more than 50%. “Without any doubt whatsoever in 100 percent of those participants minds we have got the cure for Parkinson's.”  Vicky and Jayne are leading the charge to raise awareness and money for another trial. They have been very vocal. They’ve even recorded a song called “Shine” by the G.D.N.F.ers. Each download includes a donation to another GDNF trial. They have also caught the attention of Parkinson UK. The organization’s chief executive Steve Ford is ready to throw massive amounts of money towards the project if everything on the application looks right. “We spend around eight and a half million pounds annually. That's eleven or twelve million dollars a year on research. We haven't seen the application yet, but we envisage it's going to be in the order of an annual spend on research. So, that's not significant more than we've ever spent before.” Recruiting for the next GDNF trial is expected to begin by the end of 2020 or just after the first of the year 2021. Please comment by leaving us a voice message here: https://www.speakpipe.com/WhenLifeGivesYouParkinsons Links we mentioned and source material for the show: U.S. TRIAL |Phase 1 trial of GDNF is slated for 2022 will test viral vectors for delivering GDNF in escalating doses. RADIO DOCUMENTARY | BBC Radio 4 “Chasing a Cure” with Tom Isaacs WEBSITE | ScienceofParkinsons.com FUNDRAISER | Raise a Million for GDNF by Darren & Jayne Calder FUNDRAISER | “Shine” performed by GDNFers and written by Vicky DIllon EDITORIAL | Where Are We One Year On by Steve Ford, Parkinson UK Follow me, Larry Gifford  Twitter: @ParkinsonsPod Facebook: Facebook.com/ParkinsonsPod Instagram: @parkinsonspod Follow Co-host and Producer Niki Reitmayer Twitter: @Niki_Reitmayer Thank you to my wife and partner in Parkinson’s Rebecca Gifford. Also, thank you to the following contributors and guests. Vicky Dillon Darren & Jayne Calder Steve Ford, Parkinson U.K. Helen Matthews, Cure Parkinson’s Trust BBC Radio 4 Passionate Productions for BBC Our presenting partner is Parkinson Canada http://www.parkinson.ca/ The toll free hotline 1-800-565-3000 Follow them on Twitter @ParkinsonCanada Find the new Parkinson Clinical Guideline www.parkinsonclinicalguideline.ca Our content and promotional partners Parkinson’s IQ + You– A free, series of Parkinson’s events from the Michael J. Fox Foundation Spotlight YOPD – The only Parkinson’s organization dedicated to raising awareness for Young Onset Parkinson’s disease and funds for the Cure Parkinson’s Trust.  WPC2022- Save the date for the sixth World Parkinson Congress, June 7 to 10, 2022 in Barcelona, Spain in 2022. The only inclusive scientific conference opens its doors to people with Parkinson’s and families

From prayers and real promise to being preyed upon, this is the real deal about stem cell therapy and Parkinson’s disease. In this episode we explore stem cell therapy for Parkinson’s disease. The promise of stem cells is exciting and there's amazing research underway. Later this year, the first U.S. human trials for stem cell therapy for Parkinson’s will begin in New York. This could open up a potential path for new treatments and Dr. Lorenz Studer has spent the last 22 years perfecting the treatment. In 1998, in Studer’s lab, the neuroscientist and founder of the Center for Stem Cell Biology at Memorial Sloane Kettering discovered a successful technique to transform animal cells into dopamine cells. They could transplant them into the brain and measure positive impacts on motor symptoms of Parkinson’s disease in rat models. Studer remembers it as an eureka moment, and it took from 1998 to 2011 for his team to discover the recipe for the human dopamine cells and they have now grown one billion of them. They are stored in vats filled with liquid nitrogen and have been safety tested hundreds of times. Now, nearly ten years after perfecting the recipe, people with Parkinson’s will put these cells to the test and hopefully taste the sweet success of stem cell replacement therapy. While Studer’s stem cell therapy is at least five years away, there are some companies claiming they can help Parkinson’s and other diseases with existing stem cell treatments. Science and Health journalist Laura Beil highlighted some of these organizations in her six part investigative podcast “Bad Batch” by Wondery. The podcast explores a real life story of what happened when a bad batch of cells were distributed and injected into people in Texas. She empathizes with the victims, as she recalls she would’ve done anything to help her father who had Parkinson’s.  Dr. Studer has also heard these stories and recommends you consult with a doctor before seeking any treatments. He cautions some companies looking to make a quick buck actually take fat cells out of the body and re-inject them into your body, while claiming they can cure your disease. The only FDA approved stem cell treatment is for blood diseases. Please comment by leaving us a voice message here: https://www.speakpipe.com/WhenLifeGivesYouParkinsons Follow me, Larry Gifford  Twitter: @ParkinsonsPod Facebook: Facebook.com/ParkinsonsPod Instagram: @parkinsonspod Follow Co-host and Producer Niki Reitmayer Twitter: @Niki_Reitmayer Thank you to my wife and partner in Parkinson’s Rebecca Gifford. Also, thank you to the following contributors and guests. Laura Biel, host of the Bad Batch podcast from Wondery Brian Fiske, SVP of Research Programs at The Michael J. Fox Foundation Lorenz Studer, MD Director of Center for Stem Cell Biology at Memorial Sloan Kettering Our presenting partner is Parkinson Canada http://www.parkinson.ca/ The toll free hotline 1-800-565-3000 Follow them on Twitter @ParkinsonCanada Find the new Parkinson Clinical Guideline www.parkinsonclinicalguideline.ca Our content and promotional partners Parkinson’s IQ + You– A free, series of Parkinson’s events from the Michael J. Fox Foundation Spotlight YOPD – The only Parkinson’s organization dedicated to raising awareness for Young Onset Parkinson’s disease and funds for the Cure Parkinson’s Trust.  WPC2022- Save the date for the sixth World Parkinson Congress, June 7 to 10, 2022 in Barcelona, Spain in 2022. The only inclusive scientific conference opens its doors to people with Parkinson’s and families.   Links we mentioned and source material for the show: Bad Batch podcast Fox Trial Finder International Society of Stem Cell Research ClinicalTrials.gov  ARTICLE: Canadian man growing nose cells on spine after stem cell treatment 20 years ago. ARTICLE: Reprogrammed stem cells implanted into patient with Parkinson’s disease.ABSTRACT: 1998; Dr. Studer’s research on creating dopamine brain cells that help relieve Parkinson symptoms in rats. ABSTRACT: The 2011 report Dr. Studer and his team published on the recipe to make dopamine cells for humans.ABSTRACT: 2020 UPDATE on the Kyoto Stem Cell Project.   VIDEO: (2:21) Dr. Alan Gaveck shares a testimonial claiming stem cell therapy helped a woman’s Parkinson’s disease.

This is a special bonus episode of the When Life Gives You Parkinson’s podcast called “Extra Dosage.” Full episodes of Season 2 are available every other Wednesday. In this episode of When Life Gives You Parkinson’s I visit Jillian Carson, 59, at her new Parkinson’s Wellness Centre in Victoria, British Columbia. It’s a dream that I thought would never happen.” Carson, a retired physiotherapist and nine-years into her Parkinson’s diagnosis, knows how important the centre is for people, “Everyone deserves to have the care they need. I see it now. I watch them come from their classes. They are smiling, sweating and there is lots of laughter. It’s beautiful.” The door into the centre reads “Jillian’s Gym” and there is no doubt she is the queen bee of this hive of activity. The centre is buzzing with people: coaches, volunteers and dozens of people with Parkinson’s. They take turns with heavy bags, speed bags, and other boxing equipment, stepping through giant tires, riding exercise bikes, stretching, jumping and running. While there, Jillian challenged me to a “yellie” competition. We both got down on all fours and counted by two as loud as we could. Our voices propelled a small toy forward and we followed behind racing against each other to see who’s “yellie” would cross the finish line first. That exercise worked on our cognitive skills, vocal expression and physical ability. And we laughed and laughed and laughed.  Jillian preaches the importance of having a lot of support for your PD journey, “With Parkinson’s you need a life raft. Not one person, but at least eight. Because, if one of them is not available you need someone else. Your life raft needs to be full.” The centre, which opened in September 2019, is a life raft for an entire community of people with Parkinson’s and it’s staying afloat thanks in a large part to a $500,000 anonymous donation. Visitors to the centre do not have to pay to take part. Donations, however, are accepted. Jillian is hopeful Parkinson’s Wellness Project becomes as much of a place of support as it is for exercise. She remembers the dark days in her own life after her diagnosis just three weeks before her 50th birthday. “It was hard. I was in denial for those years. What really changed it was really meeting everyone else at World Parkinson Congress. You look around see all these people living well with Parkinson’s, they’re laughing and I thought, I can do that too.” Despite the progression of Parkinson’s, which has affected her ability to cook and is causing more falls, she is full of energy and positivity. The secret is she benefits from seeing so many people benefit from the centre as they do using it. If you have a comment or question about the podcast, you can email us: parkinsonspod@curiouscast.ca We invite you to add your voice to the show and leave a message for us here; https://www.speakpipe.com/WhenLifeGivesYouParkinsons Follow me, Larry Gifford  Twitter: @ParkinsonsPod Facebook: Facebook.com/ParkinsonsPod Instagram: @parkinsonspod   Follow Co-host and Producer Niki Reitmayer Twitter: @Niki_Reitmayer Special thanks to… Jillian Carson, founder of Parkinson’s Wellness Project https://parkinsonwellnessproject.org/ Visit Parkinson Wellness Project at 202-2680 Blanshard Street, Victoria BC V8T 5E1 (250) 360-6800 To support the centre, donate here https://support.parkinsonwellnessproject.org/ For more info on our presenting partner Parkinson Canada head to http://www.parkinson.ca/ The toll free hotline 1-800-565-3000 Or follow them on Twitter @ParkinsonCanada Thanks also to our content and promotional partners Parkinson’s IQ + You– A free, series of Parkinson’s events from the Michael J. Fox Foundation Spotlight YOPD – The only Parkinson’s organization dedicated to raising awareness for Young Onset Parkinson’s disease.    Credits Dila Velazquez – Story Producer Rob Johnston – Senior Audio Producer

Sondra Wolfe and her husband Damion join Dr Sub and Warren in a discussion of their trip to The 2019 World Parkinson Congress in Japan This is episode 1 which discusses the planing and logistics on making the trip

This is a special bonus episode of When Life Gives You Parkinson’s which we are calling “Extra Dosage.” Full episodes of Season 2 of the podcast will be released every other Wednesday beginning in September 2019.   If you were to imagine Michael J. Fox in your mind right now. You probably are picturing the guy from Back to the Future or The Good Wife. Think about when you’ve seen him interviewed on TVnews programs or when he testified before congress. Those uncontrolled, involuntary movements Michael J. Fox is known for are not symptoms of Parkinson’s. It’s called dyskinesia. It’s a reaction to long-term levodopa use. Yes, the gold standard drug treatment for Parkinson’s, when taken over a long period of time, will effectively treat some of your PD symptoms like tremor, slowness and stiffness, but cause you to move uncontrollably. The Michael J. Fox Foundation describes it as fidgeting, writhing, wriggling, head bobbing or body swaying. It is important to note that not everyone with Parkinson’s will develop this complication. It is more common with people who are diagnosed with Young Onset Parkinson’s Disease (YOPD) or under the age of 50. There was no guarantee I would experience dyskinesia. I didn’t particularly want it. And in the end, I didn’t really have a vote.    After my family returned from World Parkinson Congress in Japan in mid-June, I was jet lagged and my med times and dosages were a bit out of whack. That’s when dyskinesia took hold. It had only ever really happened once before. About six months ago. I do sometimes sway and jerk a bit here and there, but I am a relative stranger to experiencing a full-on, dyskinesia episode.    It was Saturday night, my family was at the dinner table and I started to sway and rock. Slowly at first and then gradually faster and more erratic. My head started to go to the right, my shoulder popped to the left, my neck jerked back and forth. And it repeated over and over again.   About 5 minutes into the dyskinesia, I asked my wife Rebecca to record a video. The dyskinesia lasted 45 minutes. I posted the video on Facebook, Twitter and Instagram accounts. For friends and family who’ve not witnessed many physical symptoms of my Parkinson’s, this came as a shock. For people familiar with PD, my episode was rather mild. Two days later, I was at a manager’s off-site meeting with 18 of my colleagues and dyskinesia set in again. It lasted an hour. And then it happened a day later during my exercise class. I was doing a bear crawl and it was as if the bear was drunk. I couldn’t tell my feel what to do anymore. It lasted 30 minutes.       In this Extra Dosage episode, I turn to friends and fellow people with Parkinson’s who’ve been dealing with dyskinesia longer than I have. Becca Miller, 45, is a psychologist at a community mental health center in New Haven, Connecticut. She was diagnosed with Parkinson’s disease six years ago. She began to have dyskinesia two years ago.  Jim Smerdon, 45, has been living in Vancouver, B.C., with Parkinson’s since 2007. His dyskinesia was so severe he opted for Deep Brain Stimulation (DBS) surgery in 2014 in search of relief. I wanted to get them to answer some questions I had about dyskinesia and some that my friends and family posed to me after watching the video. Also in this Extra Dosage episode, the Michael J. Fox Foundation (MJFF) has announced a series of free, daylong, live events called “Parkinson’s IQ + You.” MJFF Deputy CEO Sohini Chowdhury joined the podcast to chat about it, “the goal is to create a forum where we can share information with Parkinson’s patients, family members, friends, all with the goal of empowering people with Parkinson’s and care  partners so they can optimally manage their disease and learn more about participating in research.” The “Parkinson’s IQ + You” series exciting for a number of reasons, but most relevant to me is that I have been asked to travel with the Michael J. Fox Foundation and be the host and moderator of these events across America. You can get more information at www.michaeljfox.org/PDIQ. There are other events I will be attending in the coming months that were mentioned in this episode. Saturday, August 15, 2019 – Join me at Tour de Fox Pacific Northwest in Port Coquitlam, British Columbia. Details here: https://tourdefox.michaeljfox.org/pacificnorthwest   Saturday, August 24, 2019 – Join me inin Pickerington Ohio for the inaugural Tremor Trot. My nephew Anthony and his family are working with Team Fox on this family friendly 5k. You can join us or donate to the cause. Race details here:   You can also donate to the When Life Gives You Parkinson’s Team here: Sunday, September 8, 2019 – I am the emcee and a walker for the Parkinson Superwalkin Vancouver.  Society of British Columbia. Funds raised in BC through this event help to provide valuable support services and education offered by Parkinson Society British Columbia in BC as well as fund research efforts. You can also donate to the When Life Gives You Parkinson’s Team here. Saturday, September 14, 2019 – I will be in Atlanta, Georgia for the first “Parkinson’s IQ + You” event. Register for free here. If you have a comment or question about the podcast, you can email us: parkinsonspod@curiouscast.ca   Follow me, Larry Gifford  Twitter: @ParkinsonsPod Facebook: Facebook.com/ParkinsonsPod Instagram: @parkinsonspod Follow Co-host and Producer Niki Reitmayer Twitter: @Niki_Reitmayer  Special thanks to…  Becca Miller, Jim Smerdon, Emma Lane, Sohini Chowdury, Rebecca Gifford and Henry Gifford. Credits Dila Velazquez – Story Producer Rob Johnston – Senior Audio Producer

I am in Kyoto, Japan for the 5th World Parkinson Congress (WPC). WPC is a global Parkinson's event, which is held every three years and it opens its doors to all members of the Parkinson's community, from neurologists and researchers to those living with the disease.      The WPC wrapped up the fourth and final day by announcing Barcelona, Spain as the next destination for the World Parkinson Congress in 2022. In this episode of the pod, my wife Rebecca and I sit down with Amazing Race Canada Season One winner Tim Hauge and his wife Cheryl to talk about the gifts Parkinson’s have given our families.   There’s also a roundtable discussion where participants of WPC2019 share thoughts on what they’ll take away after four days of meetings, workshops and socialization.   Eli Pollard, Executive Director of World Parkinson Coalition which organizes the World Parkinson Congress gets the final word on the podcast declaring it quite a success with a few themes bubbling up to the surface. Families and Parkinson’s is really a hot topic and there were more kids of parents with Parkinson’s were at this WPC than ever before and for the first time actually participated as speakers in a workshop. The other notably theme was the rising interest in more programming geared towards the Young Onset Parkinson’s Disease (YOPD) contingent.     Follow me, Larry Gifford  Twitter: @ParkinsonsPod Facebook: Facebook.com/ParkinsonsPod Instagram: @parkinsonspodirt For more info on the World Parkinson Congress head to www.WPC2019.org Facebook: Facebook.com/WorldPDCongress/ Twitter: @WorldPDCongress YouTube: WorldPDcongress Instagram: @worldpdcongress Thank you to: Tim & Sheryl Hauge Andy Butler, partner in Parkinson’s Vicki Dillon, person with Parkinson’s Benjamin Stetcher, https://tmrwedition.com/ Anne Cohn Donnelly D.P.H., Michael J. Fox Foundation Patient Council David Murray, Cure Parkinson’s Trust Eli Pollard, Executive Director of World Parkinson Coalition

I am in Kyoto, Japan for the 5th World Parkinson Congress (WPC). WPC is a global Parkinson's event, which is held every three years and it opens its doors to all members of the Parkinson's community, from neurologists and researchers to those living with the disease.    Parkinson’s has often been described as an old, white man’s disease. The truth is Parkinson’s is not that exclusive of a club. In fact, three things are very clear in Kyoto as the WPC wraps up day three: young people, women and people of all colours are being diagnosed with Parkinson’s disease. During a roundtable discussion on this episode of the podcast, Jim Smerdon, a person with Parkinson’s from Vancouver, B.C., noticed how indiscriminate PD is on the first day. “My question to all of these researchers, and I’ve yet to receive a decent answer, is what does it mean to them that when you looked around at the opening ceremonies and there is such a diversity. This disease covers every ethnicity, every geography, every demographic, every age core, and almost appears equally.”   A perfect example of just how diverse people with Parkinson’s can be. One of Omotola Thomas’ doctors in South Africa told her, “I think you have a form of Parkinsonism, but it’s hard for me to diagnose you with it because you are a young, black, female and this is an old, white man’s disease.” Thomas was born and raised in Nigeria. She lived in the United States, South Africa and now the United Kingdom. She began to have symptoms while in America at the age of 29. They took blood and ran every test they could think of, but because she the opposite of old, white and male Parkinson’s wasn’t initially considered. It took six years, seemingly endless tests, a move to South Africa and then to the U.K., before she was diagnosed with Young Onset Parkinson’s disease (YOPD) at the age of 35.   The time has come for a new narrative around Parkinson’s. Perhaps it could begin with an update to the old, white man sketched by neurologist Sir William Richard Gowers in 1886 to illustrate some physical symptoms of PD. It appears in Wikipedia and anytime anyone Google’s Parkinson’s disease. Another suggestion, which was a Hot Topic in the morning session, is to begin to address the needs and differences that exist between woman and men with Parkinson’s. Thomas, and women like her, have a different Parkinson’s experience. For instance, their Levodopa-Carbidopa to control Parkinson’s symptoms only works about three weeks out of every four. “Men don’t tend to suffer the same hormonal fluctuations that we do. We have certain times of the month where our medications don’t work at all. And that is very difficult to deal with.” Thomas adds, “I don’t think that’s something you experience.” She’s right. I don’t. The frustrations concerning the old, white, male stereotypes are real. Treating PD the same way, with the same drugs, no matter your gender, age or ethnicity – let alone your dominate symptoms – leads to delayed diagnosis and to prescribing inadequate pharmaceuticals. A 2019 attitude and individualized approach to each person’s Parkinson’s is desperately needed. And the whispers of past WPC’s are becoming a roar that the PD community will soon be unable to ignore any longer.  Also on this episode, kids and care partners play a prominent role in the topics and discussions at World Parkinson Congress.  Follow me, Larry Gifford  Twitter: @ParkinsonsPod Facebook: Facebook.com/ParkinsonsPod Instagram: @parkinsonspodirt For more info on the World Parkinson Congress head to www.WPC2019.org Facebook: Facebook.com/WorldPDCongress/ Twitter: @WorldPDCongress YouTube: WorldPDcongress Instagram: @worldpdcongress Thank you to: Omotola Thomas, person with Parkinson’s from United Kingdom Jim Smerdon, person with Parkinson’s from Vancouver, B.C. Andy McDowell, person with Parkinson’s from Auckland, New Zealand Lily & Pearl McDowell, children of Andy Ardrew Davenport, Board Member, Parkinson Society of British Columbia Rebecca Gifford, partner in Parkinson’s from Vancouver, British Columbia

I am in Kyoto, Japan for the 5th World Parkinson Congress (WPC). WPC is a global Parkinson's event, which is held every three years and it opens its doors to all members of the Parkinson's community, from neurologists and researchers to those living with the disease. Joy Milne of Perth, Scotland fell in love with Les Milne when they were 16 years old. They married, had three kids, he was a doctor and she was a nurse. They lived a good life. Sometime in their 30’s, Joy noticed her husband started to smell different; more musky and unpleasant. She didn’t realize at the time she was smelling Parkinson’s. It was twelve years later, her husband was diagnosed at the age of 45. Over the years, while attending support groups and other functions she realized other people with Parkinson’s had a scent like her husband’s. Nearly two decades on, she began to ask why no one was using the smell of Parkinson’s as a bio marker.  The answer? No one else seemed to have noticed.  After testing her over and over again. Science won out. It turns out Joy can smell the over production of sebum. Her work is detailed on a poster at World Parkinson Congress titled “Parkinson’s smell levels, symptom management and empowerment; when Joy met Allison.” In this episode of When Life Gives You Parkinson’s, Milne and Allison Williams talk about how Joy’s ability to smell different levels of Parkinson’s has empowered Allison and improved her PD symptoms.  Joy Milne also joins 50-year old Matt Eagles, who has had Parkinson’s since age 7, and Jonny Acheson who is three years passed diagnosis to chat about what they’ve learned at day two of the WPC. From patient advocacy, the importance of care partners and important discussions around compulsive behavior side effects of certain drugs to the absolute shock one gets when he first uses a Japanese toilet. Geneticist Matt Farrer of UBC and Yoshio Tsuboi, M.D., Ph.D. of Fukuoka University provide an interesting peek inside the complicated world of genetic research. They share what they believe is their next most promising result they have for treating Parkinson’s based on genetics.  Follow me, Larry Gifford  Twitter: @ParkinsonsPod Facebook: Facebook.com/ParkinsonsPod Instagram: @parkinsonspodirt For more info on the World Parkinson Congress head to www.WPC2019.org Facebook: Facebook.com/WorldPDCongress/ Twitter: @WorldPDCongress YouTube: WorldPDcongress Instagram: @worldpdcongress Thank you to: Joy Milne, Allison Williams, Matt Eagles of https://parkylife.com/, Jonny Acheson, Matt Farrer, and Dr. Yoshio Tsuboi.   

I am in Kyoto, Japan for the 5th World Parkinson Congress (WPC). WPC is a global Parkinson's event, which is held every three years and it opens its doors to all members of the Parkinson's community, from neurologists and researchers to those living with the disease.     Opening ceremonies were held on June 4, 2019 at the Kyoto International Conference Center. More than 2,600 registrants are in attendance from 65 different countries. The keynote of the opening ceremonies was reserved for the widow and care partner of one of the great Parkinson’s advocates of all time. Tom Isaacs was full of hope, humour and optimism, despite his Parkinson’s diagnosis. He died suddenly in 2017. His wife, Lindsey Isaacs, offered a real and raw insight into the care partners’ plight. “As Tom’s Parkinson’s progressed life got harder for everyone involved.” She continued, “For me, hope, humour and optimism were no longer enough. I became irritable and anxious about everything. I felt like a complete failure. I was his wife. I had been a trained nurse. And I am an acupuncturist. I believed I should’ve been able to cope with whatever our life through at us.” It was in that dark moment that she realized it was okay to get help. And she did. It’s was a message that seemed to resonate with care partners in attendance and one that deserved the spotlight at WPC. Prior to opening ceremonies, there was a pre-congress course on activism and advocacy. In the podcast I sit down with the course leader Tim Hague. Hague and his son won the first season of Amazing Race Canada after his diagnosis. He’s authored the book Perseverance: The Seven Skills You Need to Survive, Thrive, and Accomplish More Than You Ever Imagined and he’s the founder of U-Turn Parkinson’s in Canada. In addition, I invited four attendees to the discussion patient advocate and blogger Heather Kennedy  from San Francisco, Dr. Sarah King, PT, DPT of Austin, Texas is founder of Invigorate Physical Therapy, Dr. Siva Shanthipriya is a person with Parkinson’s from India, and Brian Toronyi is a person with Parkinson’s from Grand Rapids, Michigan . We discussed the role of advocacy in Parkinson’s especially as it relates to wellness and research. Toronyi made an impassioned pleas during the course and again on the podcast, that we need to change narrative around Parkinson’s. As a community, we’re quick say Parkinson’s isn’t going to kill us. Toronyi and others like him suggest the opposite is true. Parkinson’s is killing us, slowly, methodically, and degenerately. He says, “We don’t know when we’re going to die, but it’s like a ticking time bomb.” Follow me, Larry Gifford  Twitter: @ParkinsonsPod Facebook: Facebook.com/ParkinsonsPod Instagram: @parkinsonspodirt For more info on the World Parkinson Congress head to www.WPC2019.org Facebook: Facebook.com/WorldPDCongress/ Twitter: @WorldPDCongress

In June, I will be traveling to Kyoto, Japan for the 5thWorld Parkinson Congress(WPC). WPC is a global Parkinson's event that opens its doors to all members of the Parkinson's community, from neurologists and researchers to those living with the disease.  Since my diagnosis in August 2017, I’ve launched the podcast When Life Gives You Parkinson’s. As an extension of that podcast, I have teamed up with the World Parkinson Coalition to help preview WPC2019.  Etienne Hirsch is Director of the French National Institute for Neuro Science, neurology and psychiatry. He’s a board member and chair for the basic science program committee for this year’s WPC. In his plenary talk, Hirsch will be examining the question, “Are we moving towards personalize medicine?” Hirsch isn’t hiding his passion for the topic, “I think that it is the most important challenge these days for Parkinson's disease.” He adds, “By the way I should not say Parkinson's disease, I should say Parkinson's diseaseswith an “s.” The concept is that everyone diagnosed with Parkinson’s is not dealing with the same disease, but different diseases that deserve different treatments. Much of Hirsch’s work revolves his belief that inflammation may actually trigger the events that lead to the death of the dopamine producing brain cells. He recalls that, until recently, it was a controversial theory, “Some people were even laughing saying that neuro inflammation is a consequence of neuron degeneration. And now we know that in fact the neuro inflammatory processes are not just a consequence of neuron degeneration. These events really participate to the cascade of events leading to degeneration in the past.” In his workshop, Hirsch will help lead a discussion around why some cells degenerate in people with Parkinson’s and some do not. Eli Pollard, Executive Director of the World Parkinson Coalition, which is the organization that hosts the triennial World Parkinson Congress is expecting just over 3,000 people to attend the event in Kyoto. She encourages participants to check out “Wellness Way” which features free fitness and exercises classes in the renewal room, complimentary massage and Raiki, the Care Partner Lounge, there is a Quiet Room for people who might need to escape the crowds or take a quick nap. There’s also a clinical research village sponsored by the Michael J. Fox Foundation and with in-kind support from the Cure Parkinson's Trust. “It is a space for just people to learn about clinical research clinical trials what you should ask if you want to engage in a clinical trial.” Pollard continues, “What are your rights as a participant in a clinical trial? What do you need to know before you sign on the dotted line?” The research village will be open all the hours that the exhibit halls. Finally, Pollard has some last minute packing tips. She recommends you pack comfortable clothes and a rain coat, because it’s going to be hot and it is the rainy season in Kyoto. While some attendees will be wearing shorts, there will be air conditioning in the conference center, so pants may be more appropriate if you tend to be cold. Do not forget to bring a pen and pad of paper to take notes and trade information with other attendees, unless you are using your phone or tablet. Most importantly, if you are a person with Parkinson’s, Pollard urges you to pack at least twice the amount of medication you think you will need and better yet, pack three times the amount. She recommends you spread it out between your carry on, your checked luggage and your travel companion. Each episode of the WPC2019 Podcast, I check in with James Heron, the Executive Director of the Japanese-Canadian Cultural Centre. This week, we wrap up our Japanese tutorial with a hodge-podge of tips and insights. Key among them is to speak directly and clearly. In North America, we tend to use idioms like “pulling-your-leg,” “bite-the-bullet,” and “dime a dozen.” When literally translated by a Japanese speaker, these phrases can be confusing. Heron uses “pulling-your-leg” as an example, “There is an expression in Japanese, ashi o hipparu,which means you have to pull someone's leg which actually means to purposefully hold someone back, to make them fail, almost to sabotage someone.” Follow me, Larry Gifford  Twitter: @ParkinsonsPod Facebook: Facebook.com/ParkinsonsPod Instagram: @parkinsonspod For more info on the World Parkinson Congress head to www.WPC2019.org Facebook: Facebook.com/WorldPDCongress/ Twitter: @WorldPDCongress YouTube: WorldPDcongress Instagram: @worldpdcongress Thank you to: Etienne Hirsch, Director French National Institutes of neurosciences, cognitive sciences, neurology and psychiatry. Eli Pollard, Executive Director World Parkinson Coalition James Heron, Executive Director of Japanese Canadian Cultural Centre   Credits Dila Velazquez – Story Producer Rob Johnston – Senior Audio Producer

In June, I will be traveling to Kyoto, Japan for the 5th World Parkinson Congress(WPC). WPC is a global Parkinson's event that opens its doors to all members of the Parkinson's community, from neurologists and researchers to those living with the disease.  Since my diagnosis in August 2017, I’ve launched the podcast When Life Gives YouParkinson’s. As an extension of that podcast, I have teamed up with the World Parkinson Coalition to help preview WPC2019.  At the congress, there will be many sessions, workshops and round tables focused on issues unique to people with Young Onset Parkinson’s Disease (YOPD). A person is typically diagnosed with Parkinson’s at the age of 60. If you are diagnosed under the age of 50, you are considered YOPD. Reports vary, but the Michael J. Fox Foundation says somewhere around 10% of Parkinson’s patients fall into this category. On the podcast, fellow YOPD patients Emma Lawton and Rebecca Miller share their experiences living with the disease and offer tips around finding happiness, parenting and working with PD. Both were diagnosed at the age of 29 and will be speaking at WPC2019. Three months after her diagnosis in 2013, Emma Lawton suddenly stopped going out and doing anything, because she didn’t know how to talk about it. “I was making my life worse by letting Parkinson's make me feel the way I was letting it feel,” said Lawton. “I was actually letting it win and it was stopping me from going out and doing stuff.”  Upon reflection, Lawton believes she gave in too easily at the beginning and now realizes she’s in control of her life, her happiness and how she deals with PD. In January, in an effort to make up for lost days of happiness, she started seeking daily adventures through her “F--- it List.” Every day of 2019, Lawton is trying a new activity. She’s already been to a gun range, learned how to arrange flowers, and was shown how to be a crime scene investigator. The adventures are documented on YouTubeand her website. “I'm kind of hoping at the end of it to have something which shows me as a person what makes me happy, but also along the route might kind of inspire others to try and take control of their own happiness. Actually having something that makes me work on my own happiness and work my own well-being is actually really important to me.” Rebecca Miller has earned her PhD, is an assistant professor in the department of psychology of Yale School of Medicine, a single mother of a Kindergartener, and trying to juggle all of that with the progressing symptoms of Parkinson’s. “I really worried that I would have to stop working and that I wouldn't be able to do my job. Ironically, it's sort of actually in some ways at least for now propelled me further in my career.” Prior to PD, Miller’s goals didn’t include working her way along the faculty tract. Now she is working towards a promotion of Associate Professor and she’s writing more than she ever has. How does she balance it all? “Oh, I think maybe the idea of a balance is a myth,” she said. “Iguess I do my best to do the juggle. So, it’s really about staying flexible, accepting help, asking for help -- that is a real challenge for me.” Miller also focuses on prioritizing activities, “I know that I may not have so much energy during the day and at certain times of day.” In those moments, Miller says there is a decision to make, “What's more important; going on my daughter's field trip or working today? And just thinking, you know what? She's never going to be in kindergarten again.” Miller, like many parents with PD, feels guilty about not being able to always do the things her daughter wants her to do. She is beginning to chat about PD with her five-year-old, but just the very basics as she tries to match the conversation with where her child is developmentally, using language she understands and reassuring her at every step of the way. Each episode of the WPC2019 Podcast, I check in with James Heron, the Executive Director of the Japanese-Canadian Cultural Centre. He teaches us words and phrases that will come in handy in Japan. This episode, Heron teaches us the phrase Nihon-go ga hanase masen, which means, “I can’t speak Japanese.”  Follow me, Larry Gifford  Twitter: @ParkinsonsPod Facebook: Facebook.com/ParkinsonsPod Instagram: @parkinsonspod For more info on the World Parkinson Congress head to www.WPC2019.org Facebook: Facebook.com/WorldPDCongress/ Twitter: @WorldPDCongress YouTube: WorldPDcongress Instagram: @worldpdcongress Thank you to: Emma Lawton. Follow her adventures here https://www.thef---itlist.com/, on YouTubeand Twitter Rebecca Miller, PhD Assistant professor in the department of psychology of Yale School of Medicine  James Heron, Executive Director of Japanese Canadian Cultural Centre  

In June, I will be traveling to Kyoto, Japan for the 5thWorld Parkinson Congress(WPC). WPC is a global Parkinson's event that opens its doors to all members of the Parkinson's community, from neurologists and researchers to those living with the disease.  Since my diagnosis in August 2017, I’ve launched the podcast When Life Gives YouParkinson’s. As an extension of that podcast, I have teamed up with the World Parkinson Coalition to help preview WPC2019.  Since my diagnosis, the most unsolicited advice I’ve received is about my diet. As a change of pace, I’m actually asking for advice today from Dr. Laurie Mischley, a naturopathic physician and nutritional neuro-epidemiologist. For the past seven years, she has been tracking 2,000 people with Parkinson’s to determine how foods, vitamins and minerals are impacting the rate of progression. In this episode, Dr. Mischley comments on the positives and negatives of many diets that have been recommended to me including Keto, Gluten-Free, 7:1, and the 24 eggs a day diet.  Based on her research, Mischley finds the people with Parkinson’s that are doing the best overtime, post-diagnosis, are eating fresh fruits, fresh vegetables, non-fried fish, nuts, seeds, olive oil, coconut oil, wine, fresh herbs and spices. She notes that this is closely resembles the Mediterranean diet. As important as what to eat, is what not to eat. Mischley has identified several foods associated with statistically-significant, faster than average Parkinson’s progression including dairy, beef, fried foods, soda, canned fruits, and canned vegetables. Organic and local foods matter too. In a true or false question in her study, people who said TRUE to the statement, “I try to eat organically grown foods when possible” are doing significantly better than people who do not go out of their way to eat organic. The same thing is true for the statement, “I shop at local farmers markets, co-ops and try to eat locally and seasonally.” It is because of research and people with Parkinson’s willing to participate in that research that there are best practices, better treatments, and continuing hope for a bio-marker and a cure. Dr. Soania Mathur is a family physician who has been living with Parkinson’s for 21-years. She is speaking at WPC2019 about advocacy and research. “I think there are a lot of myths and misconceptions about clinical trials,” says Mathur on When Life Gives You Parkinson’s. “I think some of the barriers are probably logistical. It’s hard sometimes to fit into our schedules especially when you have Young Onset and you maybe work or raising a young family. Some of the clinical trials can be quite involved in terms of time. Some of it is that people just don’t know how to find trials they would qualify for and be in their geographical area.” During our discussion, Dr. Mathur also outlined some key misconceptions. She notes that some people like the idea of clinical trials, but are fearful that they will lose their current medical care. Others fear they will be subjected to tests that will be painful or inconvenient. And some are concerned that they are being used as a guinea pig for potentially dangerous medication or treatment plan. The reality is while there are invasive clinical trials, there are also observational clinical trials where you fill out questionnaires, there are genetic clinical trials where you simply provide a spit sample, and there are a lot of trials where you have to go in one time and you’re not subjected to long follow up.  Without all of these types of clinical trials the science cannot progress, our understanding of the disease won’t progress, and certainly the development of new treatments won’t occur. When you ready to participate in research, Dr. Mathur suggests you look into data bases like Fox Trial Finder, which she describes as Match.com for clinical trials. These data bases ask for your demographic information and Parkinson’s history and then suggest clinical trials near you which best suit your situation. Each episode of the WPC2019 Podcast, I’m going to check in with James Heron, the Executive Director of the Japanese-Canadian Cultural Centre to teach us a new word or phrase and help us better understand the culture so we can avoid embarrassing ourselves or offending our hosts. This episode Heron teaches us the phrase Toire wa doko desu ka?Which translates to “where is the washroom?” When you enter a Japanese washroom, Heron cautions that there are three types of toilets you may encounter. There is a traditional Japanese toilet. This toilet features a long porcelain trough that you squat over. You’re likely to only encounter this in the countryside and not in the cities. You might encounter a traditional western toilet. This a toilet much like we have here in North America. One difference is that when you flush, water comes out of a fountain for hand washing before being used to flush any liquids or solids. And then there is a modern or “space age” toilet. These toilets can feature lights, a seat warmer and many options for spray cleaning and drying. Heron notes there is no need to be intimidated, because there are pictures clearly identifying where water will be sprayed depending on your needs and that it is quite pleasant and hygienic.    Follow me, Larry Gifford  Twitter: @ParkinsonsPod Facebook: Facebook.com/ParkinsonsPod Instagram: @parkinsonspod For more info on the World Parkinson Congress head to www.WPC2019.org Facebook: Facebook.com/WorldPDCongress/ Twitter: @WorldPDCongress YouTube: WorldPDcongress Instagram: @worldpdcongress Thank you to: Soania Mathur, MD and author of Shaky Hands: A Kids Guide to Parkinson’s Disease,My GrandPa’s Shaky Handsand the blog, “Designing a Cure; Living Well with Parkinson’s Disease.” Follow Soania on Twitter: @SoaniaMathur Laurie Meschley, ND, MPH, PhD(c). You can follow Laurie’s research on her website “Education is Medicine” on her Facebook pageand on Twitter: @NatNeuro James Heron, Executive Director of Japanese Canadian Cultural Centre   Credits Dila Velazquez – Story Producer Rob Johnston – Senior Audio Producer

In June, I will be traveling to Kyoto, Japan for the 5thWorld Parkinson Congress(WPC). WPC is a global Parkinson's event that opens its doors to all members of the Parkinson's community, from neurologists and researchers to those living with the disease.  Since my diagnosis in August 2017, I’ve launched the podcast When Life Gives YouParkinson’s. As an extension of that podcast, I have teamed up with the World Parkinson Coalition to help preview WPC2019.  Traveling to a foreign country can be difficult and intimidating whether you have Parkinson’s disease or not. In this episode of the WPC2019 podcast, we concentrate on learning some basic Japanese vocabulary and learn about the cultural nuances and expectations. James Heron, Executive Director of the Japanese Canadian Cultural Centre, offers proper pronunciation and explains the translation to more than a dozen useful Japanese words and phrases from how to introduce yourself and what to say before a meal and how to ask where the washroom can be found. Heron also helps us better understand the Japanese culture. Ambiguity, for instance, is one of the traits you’ll encounter while interacting with Japanese people. He says, “It can be difficult to sometimes draw out opinions or get a clear ‘yes’ or ‘no.’” Ambiguity is driven by one of the most fundamental Japanese cultural concepts called wa, which is the Japanese word for harmony. According to Heron, “It’s very central to the Japanese psyche. As is the need to not put your opinions out there until group consensus has been reached.” Additionally, in Japan, things don’t always need to be said to be understood. Heron uses the Haiku poem to illustrate this idea, “While it’s only 17 syllables, there can be cultural markers in those very, very short poems that can open up huge swaths of meaning to the Japanese.” It’s really important when communicating with Japanese people you should be a little more patient than you might be in everyday life and avoid pushing for an opinion or answer. When it comes to eating, Heron offers a menu full of insights. For instance, never stick chopsticks upright in your rice, because that is part of the funeral ritual. Also, if you can’t use chopsticks you can ask for a spoon or fork and in Japan sushi is a hand food, so you can eat it with your hands. There are many other lessons tucked inside this episode including what to know about the “Japanese smile,” what to expect when you enter a Japanese washroom, where you can go to get quick cash, and what to know about slurping noodles.     Follow me, Larry Gifford  Twitter: @ParkinsonsPod Facebook: Facebook.com/ParkinsonsPod Instagram: @parkinsonspod For more info on the World Parkinson Congress head to www.WPC2019.org Facebook: Facebook.com/WorldPDCongress/ Twitter: @WorldPDCongress YouTube: WorldPDcongress Instagram: @worldpdcongress Thank you to: James Heron, Executive Director of Japanese Canadian Cultural Centre   Credits Dila Velazquez – Story Producer Rob Johnston – Senior Audio Producer

More than ten million people around the world live with Parkinson’s disease (PD). The World Parkinson Coalition (WPC) is a nonprofit organization that provides an international forum on the disease and every three years holds the World Parkinson Congress. The 2019 congress will be in Kyoto, Japan in early June, bringing together people with PD, care givers, physicians, scientists, nurses, and rehabilitation therapists for a worldwide dialogue to improve and expedite advances in treatment practices. Through large forums and smaller sessions, attendees will share knowledge and ideas. Eli Pollard, VP of Education at the Parkinson’s Foundation and Executive Director of the WPC, says its goal is to bring these diverse constituencies together to engage in high level discussions of a wide range of aspects of Parkinson’s, including treatment, scientific advances, and care options. 

In this episode I speak with Gila Bronner, founder and former Director of the Sex Therapy Service at Sheba Medical Center in Israel. She is also a sex therapist at the Movement Disorders Institute of the medical center. She tells me Neurologists, nurses, and other health professionals, in general, are not taught about sexual issues patients may have, where to refer them when issues arise, or how to talk to patients about it. Bronner has proven there is an association between Parkinson’s and sexuality. In her research, Bronner discovered nearly three of every four people she studied with Parkinson’s had some sort of sexual problem. Aging and challenges from Parkinson’s both contribute to the issues, but people with Parkinson’s were still 30% to 50% more likely to have problems compared to people of the same age who did not have PD. Parkinson’s effects desire, arousal and the ability to orgasm. Bronner finds the issues are often significant enough that couples stop being intimate all together. In Kyoto and in this episode of the podcast, she outlines the various sexual problems associated with Parkinson’s disease, various treatments, communication issues, and how to keep intimacy with your partner.  Each episode of the WPC2019 Podcast, I’m going to check in with James Heron, the Executive Director of the Japanese-Canadian Cultural Centre to teach us a new word or phrase and help us better understand the culture so we can avoid embarrassing ourselves or offending our hosts. This episode, Heron explains how to introduce yourself. Hajimemashite Watashi wa Larry desu loosely translated means (It is a beginning) (Hi!) (I am) (Larry) (to be). Follow me, Larry Gifford  Twitter: @ParkinsonsPod Facebook: Facebook.com/ParkinsonsPod Instagram: @parkinsonspod For more info on the World Parkinson Congress head to www.WPC2019.org Facebook: Facebook.com/WorldPDCongress/ Twitter: @WorldPDCongress YouTube: WorldPDcongress Instagram: @worldpdcongress Thank you to: Gila Bronner, , James Heron, Executive Director of Japanese Canadian Cultural Centre  

David Sangster is an Ambassador for World Parkinson Congress. On April 3, 2019 David is having Deep Brain Stimulation (DBS) surgery. It’s a treatment used for late-stage Parkinson’s disease that involves surgically implanting electrodes into the brain. The electrodes deliver small electric pulses which help reduce slow movement, tremor and stiffness. David was diagnosed in 2011 and lives with severe tremoring and twitching, dyskinesia, rigidity and more.  He chatted with me on the podcast a couple weeks before surgery. I asked if he was nervous, “No. I just feel ready, I think. I know the risks. It’s worth it.” He’s documented his journey to DBS on his YouTube channel. His coming out party after the surgery will be attending the WPC2019 in Kyoto. There will be a lot of researchers at the congress too and for good reason according to Dr. Simon Stott, “There is never a good time to have Parkinson’s, but now is the most dynamic time for Parkinson’s research.” Stott is Deputy Director of Research at The Cure Parkinson's Trust in the UK and his website “Science of Parkinson’s” is plain English information about the research conducted on Parkinson’s. He’s been researching for the last 15 years, “When I first got into Parkinson’s research, there was one or two clinical trials that were looking at disease modification of Parkinson’s. That is slow, stop or reverse the condition. And now there is just dozens and dozens.” While he gets excited about the research, Stott is weary about expressing it too much, because he doesn’t want to raise people’s expectations. He explains that high expectations can impact research results by triggering a placebo effect and cause the group not getting the treatment to think the treatment is having beneficial effects. Additionally, Stott notes that 95% of everything that’s gone into clinical trials thus far have failed, so it’s prudent to approach whatever you’re testing with an assumption that it is going to fail.  In this episode, James Heron teaches us the Japanese toast, “Kanpai!” It’s really means “dry cup” and is the equivalent to “bottom’s up!” or “cheers!” You can hear the proper pronunciation if you google the phrase online. The Japanese often remove their shoes when entering a home or restaurant. Heron says when it is expected to remove your shoes, it will be apparent. When you do take your shoes off there is usually a set of slippers they’ll give you. Heron notes that in a traditional restaurant this will get you from the entrance to the tatami mats where you will remove your slippers before sitting down in your socked feet. Most of these restaurants will also have a second set of slippers for the washrooms. Be sure to remove the washroom slippers and put your restaurant slippers back on before returning to your tatami mat. Follow me, Larry Gifford  Twitter: @ParkinsonsPod Facebook: Facebook.com/ParkinsonsPod Instagram: @parkinsonspod For more info on the World Parkinson Congress head to www.WPC2019.org Facebook: Facebook.com/WorldPDCongress/ Twitter: @WorldPDCongress YouTube: WorldPDcongress Instagram: @worldpdcongress Thank you to: David Sangster, Ambassador to WPC2019 Dr. Simon Stott, Deputy Director of Research at The Cure Parkinson's Trust and Science of Parkinson’s James Heron, Executive Director of Japanese Canadian Cultural Centre

One of the exciting areas of research as it pertains to understanding Parkinson’s disease is in genetics. Dr. Matt Farrer is a Geneticist at the Djavad Mowafaghian Centre for Brain Health. In 2004, he found the first genetic connection to Parkinson’s, LRRK2, and his team has sincee identified about dozen others. Dr. Farrer is the first to admit Parkinson’s is not a genetic condition, but as with everything biological there is a genetic component, “The genetic component in Parkinson’s is 27%. That’s the variability in the condition that can be attributed to a genetic cause.” He explains that most people don’t have a clear cut passing of inheritance down the family line from their parents to them, for example. It does happen sometimes, but those families are pretty rare. Dr. Farrer is looking for unequivocal answers. He wants to know what the issue is from a molecular point of view down to a single protein. Once that is determined, Farrer and his team work backs to find out what that protein is doing in a cell, what that cell is doing in a brain and how the mutation discovered leads to disease. “The whole goal is to predict and prevent,” Dr. Farrer says when asked about the chances of a cure. “Cure is a difficult term. I would like to prevent symptoms from progressing. I would like to slow down or halt the disease in people who already have a diagnosis. I would like to prevent it in subjects who may be destined, for example, because of their genetics.” In Kyoto, Dr. Farrer will be discussing new insights into the function of LRRK2 from a genetic point of view. The information may be a bit heady for folks who aren’t researchers, but if you’re interested, Dr. Farrer encourages you not to be intimidated by esoteric terms he may use. Farrer concludes, “Everyone’s coming to Kyoto anyway, it is a strange place for many, but it’s a wonderful place. Get immersed in it.”  There are quite a few shout-outs to how beautiful Kyoto is. Here is a list of attractions that are listed by level of accessibility, which will help you plan which sites might be a best fit for your ability to get around the city. There is a magazine called Fokus. It’s like Sweden’s Time Magazine. Fokus’ 2018 Swede of the year in medicine was Sara Riggare. She was diagnosed with Parkinson’s in 2003. 18-years after her first symptoms first appeared. Riggare, co-chair of the Patients Advocate Committee for WPC2019, is self-described as a Parkinson’s “im”-patient. A chemical engineer by trade, she returned to school and is a PhD candidate researching digital self-care for Parkinson’s. Riggare is a proponent of making use of the possibilities of technology and the World Wide Web to benefit individuals with Parkinson’s and empower them with knowledge. “From doing that,” Riggare says, “I learned to observe my body more consciously and I think I’m more attuned to how my body works and the medication effects it.” Each episode of the WPC2019 Podcast, I’m going to check in with James Heron, the Executive Director of the Japanese-Canadian Cultural Centre to teach us a new word or phrase and help us better understand the culture so we can avoid embarrassing ourselves or offending our hosts.   When you are sitting down to eat or just before you eat, Heron explains that Japanese people will say, “itadakimasu” which is comparable to “Let’s eat” or “Bon appétit.” A pronunciation can be listened to if you google these phrases online.  When it comes to chop sticks, Heron suggests you practice before arriving, but if you are having troubles it is perfectly acceptable to ask for a spoon or a fork. “The important thing with chop sticks,” Heron cautions, “is not to stick them upright in your rice. That is something that is actually part of the funeral ritual.” Also, you should never pass food with your chop sticks and only use the ends of chop sticks that are not going in your mouth to take food off a shared plate. Heron also shared some notes regarding specific foods. When eating noodles, he says, it is okay to slurp. Sushi can be eaten with chopsticks, but is often a hand food. He says the Japanese do not pour soy sauce over anything and they only dip the fish side of the sushi into it, never the rice. Follow me, Larry Gifford  Twitter: @ParkinsonsPod Facebook: Facebook.com/ParkinsonsPod Instagram: @parkinsonspod For more info on the World Parkinson Congress head to www.WPC2019.org Facebook: Facebook.com/WorldPDCongress/ Twitter: @WorldPDCongress YouTube: WorldPDcongress Instagram: @worldpdcongress Thank you to: Dr. Matt Farrer, Geneticist at Djavad Mowafaghian Centre for Brain Health Sara Riggare, co-chair of the Patients Advocate Committee for WPC2019. She’s blogging here. James Heron, Executive Director of Japanese Canadian Cultural Centre  

After he was diagnosed with Parkinson’s, Tim Hague Sr. won the first season of “The Amazing Race Canada” and wrote a book called Perseverance: The Seven Skills You Need to Survive, Thrive and Accomplish More Than You Ever Imagined. In this episode, Tim and I chat about diagnosis, acceptance, finding balance, asking for help, building a community and why it is important for people with Parkinson’s to have a mindset of an athlete. Then we talk to Elaine Book, a social worker at the Pacific Parkinson’s Research Centre in Vancouver, BC. She’s involved with the Care Partner Lounge and will be speaking at the WPC about the impacts of Parkinson’s on children in the house. Then I check in with James Heron, the Executive Director of the Japanese-Canadian Cultural Centre to teach us the phrase Yoroshiku onegaishimasu, which means please treat me in a favorable manner. But, it can also mean ‘how are you?” It’s used particularly in a first meeting or when asking someone for a favour. A key thing to keep in mind when saying phrases in Japanese is to be sincere, speak slowly, and be polite. Simply making the attempt to speak Japanese will be appreciated. You can read more info in this Global News article https://globalnews.ca/news/5048608/when-life-gives-you-parkinsons-podcast-positive-impacts/  Follow me, Larry Gifford Twitter: @ParkinsonsPod Facebook: Facebook.com/ParkinsonsPod Instagram: @parkinsonspod For more info on the World Parkinson Congress head to www.WPC2019.org Facebook: Facebook.com/WorldPDCongress/ Twitter: @WorldPDCongress YouTube: WorldPDcongress Instagram: @worldpdcongress Thank you to: Tim Hauge Sr., Author of Perseverance: The Seven Skills You Need to Survive, Thrive and Accomplish More Than You Ever Imagined Elaine Book, Social worker at Pacific Parkinson’s Research Centre James Heron, Executive Director of Japanese Canadian Cultural Centre  

In June, I will be traveling to Kyoto, Japan for the 5th World Parkinson Congress (WPC). WPC is a global Parkinson's event that opens its doors to all members of the Parkinson's community, from neurologists and researchers to those living with the disease.  Since my diagnosis in August 2017, I’ve launched the podcast When Life Gives You Parkinson’s. As an extension of that podcast, I have teamed up with the World Parkinson Coalition to help preview WPC2019.    In this episode, Jill Ames-Carson, the co-chair of the ambassadors program, can’t say enough good things about the congress, “The World Parkinson Congress changed my whole life and how I live with Parkinson’s. It gets everybody ‘Parkinsons’ in the same room together. Which is an absolutely amazing feeling, because you know you’re not alone.” She suggests those planning to attend review the program online or download it, before landing in Kyoto. The thermometer next to each session indicates the level of scientific discussion. The other symbols let you know whether it's a basic science, clinical science, or comprehensive care “As a person with Parkinson’s I would really advise you to attend things you’re interested in.”   Dr. A Jon Stoessl, the co-chair of WPC2019, agrees noting some of the presentations will be very scientific, “It’s important for the meeting to be a top-notch scientific meeting and we truly believe that it is and so there are sessions that are targeted really only towards scientists.”  This year, among the world renowned researchers and neurologists there will be a Nobel Prize winner.   In our discussion, Dr. Stoessl mentioned the Pre-Congress Courses. These are full day courses that take place Tuesday, June 4. You can see what is being offered by visiting this page on WPC2019.org website. Both, Dr. Stoessl and Ms. Ames-Carson talked about pacing yourself. There is a lot to do, but if you have Parkinson’s, you will want to build in down time. If you need a break from sitting through educational sessions, the WPC has a variety of spaces where you can recharge or get some exercise. You can learn more about that on the wellness page of the website.  As you prepare for your trip, Ames-Carson suggests you pack a pen, a pad of paper, and some small gifts from your home country to offer to new friends you’ll meet. The WPC offers other tips in its online Travel Tool Kit.   Each episode of the WPC2019 Podcast, I’m going to check in with James Heron, the Executive Director of the Japanese-Canadian Cultural Centre to teach us a new word or phrase and help us better understand the culture so we can avoid embarrassing ourselves or offending our hosts. This week we start with a simple hello. But, it’s not so simple. Depending on the time of day, the Japanese have three different greetings.   In the morning until around 11a, the full formal greeting is Ohayô gozaimasu. Informally you can also use Ohayô. In the midday from about 10a-5p, the appropriate greeting is Konnichiwa. In the evening, Konbanwa, is the greeting that is most invoked.   Pronunciations can listened to if you google these phrases online. A key thing to keep in mind when saying phrases in Japanese is to be sincere, speak slowly, and be polite. Simply making the attempt to speak Japanese will be appreciated.   Heron also notes that silence is an important part of the communication approach. The Japanese have a saying that goes, “words separate and silence unifies.” Citing studies by other linguists, Heron cautions us that North Americans are less comfortable with the amount of silence we allow to pass in conversation before feeling a need to fill the void. In Japan, the acceptable amount of silence is over four seconds, but for North Americans after three-quarters of a second we begin to feel a sense that the communication is dying and we need to say something. If we fill those silences too quickly, we muddy the communication waters.     Follow me, Larry Gifford  Twitter: @ParkinsonsPod Facebook: Facebook.com/ParkinsonsPod Instagram: @parkinsonspod For more info on the World Parkinson Congress head to www.WPC2019.org Facebook: Facebook.com/WorldPDCongress/ Twitter: @WorldPDCongress YouTube: WorldPDcongress Instagram: @worldpdcongress Thank you to: Jill Ames Carson, co-chair of World Parkinson Congress Ambassador’s Program 2019 Dr. A. Jon Stoessl, co-chair of World Parkinson Congress 2019    James Heron, Executive Director of Japanese Canadian Cultural Centre   Credits Dila Velazquez – Story Producer Rob Johnston – Senior Audio Producer John O’Dowd – Content Producer

Special Guests: Dr. Serge Przedborski and Elizabeth Pollard In our final podcast we preview the upcoming 4th World Parkinson Congress by talking with Elizabeth "Eli" Pollard, Executive Director of the WPC and Dr. Serge Przedborski, WPC President and co-chair of the Portland Congress.

 Parkinson's disease has no cure. But, new developments can help those with Parkinson's lead a quality life.Parkinson's disease is a motor system disorder. Some symptoms are trembling, stiffness, slowness and impaired coordination. There is currently no cure for Parkinson's disease.However, new developments are making symptom management easier. For example, there are now patches and nasal sprays for those who have difficulty swallowing pills because of the condition.Thanks to social media, people with Parkinson's don't have to feel so alone. It is easier to contact others who have the same condition. There are support groups and communities for sufferers and caretakers.World Parkinson Congress is a triennial meeting that covers the latest on the disease. Talks vary from the latest research to techniques for care.Listen in as Eli Pollard of World Parkinson Coalition joins Melanie Cole, MS, to share the latest developments in easing Parkinson's symptoms.

Pamela Quinn danced professionally for 20 years with ODC/San Francisco and with actor/writer MichaelO'Connor before being diagnosed with Parkinson's Disease at age 42. Recently, she made a video entitled 'Welcome to our World", which shared first prize at the 2010 World Parkinson Congress. Pamela has developed an amazing range of creative movements, exercises and dances that have helped herself and others cope with the many and various symptoms of Parkinson's Disease. Learn more about her at www.pamelaquinn.net